CSF Leaks and Spontaneous Intracranial Hypotension

Bad headaches for the last 6 days!!!! It's great to read these comments because I'm going through the same thing. On Friday, June 26, 2009 I had an epidural injection to my lower back for a herniated disc. I woke up Saturday morning with a dull headache and took medicine for it and just waited for it to go away. It didn't. In fact throughout the day it got worse. I couldn't sleep Saturday night because of the pain. I spoke with the on-call doctor on Sunday morning and said since I wasn't getting worse standing up that it wasn't a spinal headache and said it had nothing to do with the procedure. He prescribed hydrocodine to help with the pain. Normally that works for me, but not this time. It didn't even touch the pain. I called the doctor's office that did the procedure and got in to see them Tuesday (6/30/09). They blew me off and said live it for the next week and then they'll refer me to a neuologist (sp). I said,"Another week? You've got be kidding me." Unfortunately, they weren't. I was finally told to take another type of pain killer and call back on Thursday. So here it is Thursday, still in pain and the doctor hasn't called. I talked to my primary doctor, but was told they can't do anything since I'm supposedly in contract with the doctor that did the procedure. I'm extremely frustrated because I hurt and something is wrong.

I didnt know about this condition until two months ago. When I read all the symptoms I was elated because it is a dead ringer for every symptom that I have been going through. I used to have tubes in my ears for frequent infections, and bad nose bleeds that would not clot. I was trying painkillers and psychopharmaceutical drugs for years for headaches, etc., to no avail. So, I bought glucose test strips and found trace glucose in my mucus. Went to doctor and got an MRI and they said they didnt see anything so I don't have a CSF leak. I asked for them to look at my sinuses because they hurt so bad, or maybe do a CSF flow study. Nope. Where do I find a doctor to believe me? I've been semiconscious for months in bed with partial seizures; this is ridiculous at the least.

I had surgery for L,3-4 l,4-5 s,1 surgery in November 2008 to remove all of the metal and remove some over growth that had formed,I started having sever headaches in late December.I have gone from doctor to doctor looking for an answer with no avail.

At the end of my rope I picked up the phone and call a total stranger in the doctor world I saw him on the 8th of June and was in surgery on the 11th,
He ordered am MRI of my lower spine my luck was the leak was obvious on the scan
I had created a cyst about the size of an orange, He sent me directly back to my surgeon same day, the surgeon tried to drain the cyst which caused sever leg back and headaches. I went from there directly to the hospital via ambulance due to the fact my right leg had currled up under me and would not straighten out.

I spent two days in the hospital before surgery flat on my back no movement head had to stay below 30 degree incline, trying to get ready for the surgery.I had surgery on Saturday morning to close the leak the Dr stated he went directly to the leak which was just over a 1/4 inch long he sutured glued and patched the spot, my headaches and leg pain have not returned since and was released to come home the Tuesday afterward I will be on a 5lb lift restriction till the end of July.

My suggestion is if you think something is wrong keep looking you are the only one who knows your body. if you are told nothing is wrong try again I was blown off by three doctors even my surgeon.

I have "Trigeminal Neuralgia". I have had two "Right Sided Micro Vascular Decompression" surgeries. 1st one on March 23, 2007. 2nd one on January 26, 2009. From the 2nd surgery, I develop a CSF leak. I had the blood patch done on my "Dura". That was on March 6, 2009 No more leaks. And I don't have too much Trigeminal pain anymore. But what I do have on the right side of my is numbness and a BIG HEADACHE on my right temple all the time.

I am not getting much help from the doctors regrading this pain.

Thanks for any help you can give.

Barbara

I was told I had SIH in sept 2008.After two blood patch which did not work I was given a dose of caffeine through IV over 2 hours, I think it was 500ml of caffeine......and it worked!!!!. The caffeine somehow helps to make more csf and in turn helps the process of healing. what ever the reason it worked for me and I advise people to try this simple way to get fixed. I lay in bed for 8 months with brain pain until i got my great improvement. The problem is in the UK the caffeine is hard to get, but this does not mean you should not try and try like me and my husband did.

I am able now to stand all day, still have headaches but not bad enough to prevent me from standing up and getting on with most lowkey activities. I am improving- just very slowly day by day. But the important thing is I have most of my life back, apart from full time work. All the storys on this page are of people still suffering and I hope my story helps to give some hope to SIH suffers.

For the last year or so I've been experiencing migraines, just once a month immediately following my menstrual cycle. A few months ago, things changed and I started having daily migraines. They would start out low grade every morning and increase in intensity as the day progressed. By evening, I could barely function. I was also starting to have other female problems right around the same time (I'm 40) so they chalked it all up to perimenopause, but the doctor sent me to a neurologist just to be sure.

My first neurologist ordered an MRI and put me on Topamax and Midrin. The Midrin had no effect at all, and the Topamax could've anesthetized a horse. I was in a constant stupor. Also, his whole attitude about my situation left much to be desired. He treated me like I was nuts. After six weeks of getting absolutely nowhere and still feeling like crap, I found another neurologist on my own.

The new neurologist looked at my MRI and found a small amount of clear fluid in one of my sinuses--not an infection and not enough to cause the awful headaches, but something to monitor. (She even sent me to an ENT just to rule out anything else, and everything was fine.) Also, she immediately took me off the Topamax and Midrin and put me on Depakote with Relpax as a backup medication.

For a few weeks, I got some relief but now the headaches are coming back. Again, they're low grade in the morning and worsen as the day goes on. Also, I'm experiencing nausea (which I've always had with migraines) but also pulse-synchronous tinnitus (whooshing sounds in sync with pulse rate and ringing in the ears) and I'm starting to have problems with my vision. The one other symptom that finally clued me in is that when I lean forward and strain to lift something heavy (Dandy maneuver), clear fluid leaks from my nose. I'm not congested or suffering from allergies. This is the only time I experience this.

After all my research and seeing all the posts here on this blog, I feel like I have a pretty solid case to present to my neurologist. I'm scheduled to see her in a week. Wish me luck!

WOW I am overwhelmed with everyone's stories. I had a CSF leak caused by a surgery for Laminectomy/Discectomy L4/L5. It was 7 days after surgery, I woke up with a migraine worse then any other. Every time I sat up I threw up, you all know what the headache felt like. Went all day like that, my mom called my surgeon that evening and he said "It has nothing to do with what I did; she has a bug call her primary." Next day I had to go to his ofc to see his nurse as I had 22 staples in my back because he started cutting me in the wrong spot! Of course in tote with my bucket to throw up in every 2 minutes or so because I was standing up. She told me to go see a neurologist for my migraines and that she couldn't see me in my current state. SO I went to St. Joes in Tacoma, WA spent 9 hours there. They ran NO TESTS but told me there was nothing medically wrong with me and set me home with percocet and phenagran. They treated me like someone who just wanted a narcotic fix. Next day I went to Valley Medical Center in Renton, WA they admitted me. Because I had a very large incision on my back they couldn't do the spinal tap in the ER. So within a couple of hours of my getting a room a neurologist came in and told me I have CSF leak they just need to prove it. So they came up with some radioactive test where they give you this radioactive stuff intravenously, do a spinal tap, take a little bit of spinal fluid out to test and then they add more of the radioactive stuff in at that site. You cook (lay down pretty still for an hour to hour and half) and then you have to stay very still in on this bed where this camera works its way around you and for 55 min and takes a streaming video so they can see the leak. I managed to skate by with 30 days of bed rest in hospitals and nursing homes as they put a cathader in and made me lay down 24/7. After my stay in the nursing home they sent me back to Valley via ambulance to re-test. Still leaking. They sent me to the University of Washington Hospital where there is a surgeon Dr. Trent Tredway who surgically repairs CSF Leaks. I know he has had people fly in from other states for this surgery. I love him! I had a spell yesterday and some lingering issues today fearful of still leaking but hopefully just a fluke as it was my first migraine after all this. I hopefully have been leak freak and vertical for 1 month and 2 days! I wish you all the best and if anyone is in WA. Valley Medical Center has a test to prove and UW has a way to fix if it is surgically fixable.

I am looking for information on this sunject, my boyfriend had a condition that the doctor's can not diagnose. He has spinal fluid that leaks out of the bottom of his back and creates a patch of blisters. He was tested for herpes which it is not/ he has had MRI's and cat scans and the fluid tested...which came up as spinal fluid. What could this be any ideas? He claims the doctors do not know...we need a lead thank you!

I, too, have a history of CSF headaches. I started feeling tension in my neck and a light headache in early 2001. After three weeks of I awoke one day with a monumental headache...unlike anything I had ever felt. Went to ER and was told I was tense (DUH!) and needed tranquelizers and to change lifestyle.. Well, lifestyle was already calm and unstressful but I took the meds anyway, went home and went to bed. Two days later it hit again but much worse. Got to ER and when they told me to stay in the wheelchair until I was checked in and I couldn't do it...had to lay down on the floor. That got their attention!
Had classic symptoms: headache (which eased when I was laying flat), nausea,
vomiting, tinnitus and fatigue. Next day they ambulanced me to Stanford University Hospital, where I spent a week undergoing painful tests and was finally given a caffeine IV and sent home. The MD's there were almost useless and did not listen to me. They said (after MRI's, Cat scans, nose plugs and barium injections, etc) that they couldn't find the leak. I told them about the 5 inch diameter lump between my shoulder blades and they said it was just edema from lying on my back. ...And where did the extra fluid come from??? They didn't care and said it was irrelevant. Well...any change like that is NOT irrelevant.

I finally figured it out on my own.
My leak is between my shoulder blades and I can feel it when it leaks. If I stress out that area with heavy lifting, Yoga shoulder stands, driving on really curvy roads, or sometimes just coughing I can feel the leak start.
I can slow down the leak by immediately stopping the stressful activity and getting quiet and still (if possible flat on my back).
What helps? Painkillers NO! They don't touch it.
Alcohol NO! The dehydration makes it worse.
Massage NO! The massage relaxed me but pulled on the muscles and caused the leak to get worse.
What really helps? Caffeine, lots of water, bedrest, avoiding stressing the area, and moderate gentle exercise.
I am interested in the naturopathic doctor's ideas. I don't think modern medicine has a clue on this illness. I have not had any remedies from them and am fortunate that the killer headaches went away on their own. However, I do still have the 24/7 (very light) headache, hearing sensitivity, inability to focus on detail work on computer for more than a few minutes, and the fear that another Brain Drain could happen at any moment.
PS: I really appreciate this chance to communicate with other people who have had this illness. The MD's kept saying is was 'all in my head'...maybe so but that doesn't mean I am crazy...it means that I am in pain!
Hearing other peoples symptoms has been helpful. I am not alone!

last year I had epidermal injections for my lower back. a few months later i had this overwhelming terrible taste of salt in my mouth. the more I brushed my teeth to try and get rid of the taste it made it worse. I did not put it together at that time. since I was reading some of these posts. I usally suffer headaches as a norm for me. I had gone to my general doctor for the salt taste but I felt they thought I was crazy. So did i feel i was going crazy. its so nice to know Im not alone. this year I was just diagnoised with sphenoid sinusitis about 8 months after the salt taste. my lining of my nose was swollen Iam unable to get any mucus out. I have had this for about 5 weeks now. I only went to the emergency room when my head was about to explode. when I stand up the pressure is very intense laying down seems to releive the pressure. I was given antibiotics and pain killers. a couple of days on the antibiotics I broke out in large red spots on my hips, buttocks and inner thighs. a few on my forehead as well. but they were not raised or itchy. I was told this was a reaction to the antibiotics I was changed antibiotics. Ive been allergic to penicillin for years. the new antibiotics i was given made my stomach in very much pain. I have an appoinment with otolaryngology in a few days. I so hope I can have this problem fixed cause I would never want to have to suffer the pain in my head again it was unimaginable. I think when someone is complaning about something as silly as a salt taste in their mouth it should be looked at with more seriousness then they do. at least direct them to the right kind of doctor that can help them. its been 8 months at least now and Im finally coming to a conclusion of what it might be. Thank God!!!!!

I am a 56 year old "Young" woman. This is my story: Traveled home from a weeks vacation at the beach on Friday 8/2/08. Had a great time. Then life changed as I knew it. The next day I woke up with what I thought was a migraine headache. By the 4th I went to the emergency room. They said I have a migraine and sent me home after giving me a shot. On Monday, the 5th I called my previous neurologist. Because I hadn't been there for a few years they stated that they could not help me and that I would have to go to my family Doctor for a referral. I couldn't believe it. I called my family Doctor and they would not give me a referral until I had come in for an appointment. I was given an appointment on Tuesday of that week. I was in so much pain I was taking pain medicine I had at home and nothing worked. I could not move, if I did I vomited immediatley. After seeing my family doctor he prescribed a different migraine medicine that was new to the market. He stated that if it didn't work call him back in a few days. Well it didn't do anything and I called him the very next day. He set up an appointment with a new Neurologist and they took me in on Thursday as an emergency. When I arrived a the office I had to lay down immediatley. The Doctor thought it was also a migraine. She gave me two shots in the back of my neck to numb my head so I would get relief immediately. Well I didn't. The medicine she gave me didn't work and she had told me that if I did not feel relief by Sunday to go to emergency room on Monday and request an IV of Depakote (which is what I always took for my migraines). Well of course nothing worked but I was not able to get to the hospital until Tuesday. I also was experiencing double vision by this time. As soon as I was looked at in the ER, I was taken for an MRI. With the double vision and pain I was experiencing and the MRI showing mennigies(SP?)as well as the Lumbar puncture, I was immediatley placed in isolation as they thought I had spinal menningitas and told I could die!!! As those tests came back they removed me from isolation the next day and placed me in a hospital room where I stayed for 7 days. I was given shots of morphine every 4 hours and shots of phenigrin (SP)for nausea every 6 hours. I was in heaven. I had a total of 3 MRI'S and 3 spinal taps (lumbar puncture) and continued with the double vision. After 7 days of not coming up with anything or trying any other medicine to help the problem they transferred me to HERSHey Medical Center where I stayed for 4 more days and received 3 different MRI's and 1 more spinal tap as well as made to wear an eye patch for the palsey. They sent me home stating that the results of the tests they took showed I most likely had MS. Well I wouldn't hear anything for another week and was scared to death. I was sent home with NO pain medicine after being on it for 11 days. I was in such excruciating pain I kept calling the hospitals medical service. They finally called an RX in that helped somewhat relieve the pain. When I went back for my results a week later they stated that I did not have MS or any type of illness like that . They tested me for AIDS, Syphallis, Lyme Disease, etc. You name it I was tested for it. I couldn't stand the pain any longer so I called my Neurologist and she set up an appointment within two days for me to have a Blood patch. After reviewing all my tests from both hospitals it was plan to her that my spinal fluid level pressure was very low. She was amazed that all the doctors that had seen me did not notice the low pressure and treat it properly. I still had the double vision which was actually called 6th Nerve Palsey. Once I had the blood patch it took approximately 2 days and I was pain free. After two months of HELL I was finally cured. It took 1 more month for the nerve to reattach in my eye and then my vision was back to normal and I was able to stop wearing the eye patch. Thank God for my neurologist. She stated to me that she was in contact with some of the Doctors at the hospitals and kept telling then to read the pressure level. Anyway I am on one pill a day, amytriptolin (/), to help keep my normal headaches away. I would not wish this pain on my worst enemy. At one point I just prayed to die. During this my scalp even hurt that I was not able to touch it to comb my hair. I am so thankful that this was resolved and also that I have a clean bill of health from all the tests that were taken. It took me a while to find this site. Thank you to F. Micheals at Bryn Mawr college for writing this paper.

Okay. So this is me...I was sitting at my desk at work 3 weeks ago. I sneezed. Hard. Right after that my headache started and has not gone since. I've had all of the MRI's and CT's, medications and even the blood patch. I just had that done yesterday so I'm still waiting for it to kick in. I havent't taken any percocets in the last 24 hours which seemed to take the edge off of my pain. Glad to hopefully be off pain medication. The problem is that they can't find a leak. They are treating me as though I have a leak along with what they call intracranial hypotention. The hypotension suggests that my crainal (fluid) pressure is low but when they did a spinal tap it showed up in the high range of normal. When they did a follow-up MRI they saw that the fluid around my brain has decreased. This is what convinced them that I might have a CSF and to do the blood patch. I've had all of the symptoms,severs headache, loss of hearing, tinnitus, vertigo, nausea, and even vomiting. I know not every case is typical but I wondered if anyone else showed "normal" test results but was treated for CFS and IH with any positive results. I am a 45 year old female and live in CT for anyone that might be interested in the Doctor's that I've seen. They are great. My anesthesiologist that performed the blood patch procedure is excellent. Even my neurologist has been extremely attentive.

My husband, 50, has been diagnosed with a CSF leak. they want him to go to Philadelphia for treatment. I would like to know if there is anyone in NJ that performs the blood Patch. We are in northern NJ. Thanks in advance

Hi,

I have been struggling to find the cause (even the diagnosis) of my headaches since July 20, 2004 when over a 2-3 day period I had an incredibly painful headache out of the blue. I had a spinal tap and CT scans which resulted in a diagnosis of viral meningitis. The headache persist today, 24/7. I have had MRIs which indicate I'm normal. I've had about every test in the world done and it says I'm a healthy 29 y/o male. Yet I have a pulsing, foggy-head, dull pain that will not stop. I wanted to know:

Is it possible to have a leak and it not show up on an MRI? If that's the case, what is the next step? I may have a condition called New Daily Persistent Heachace (NDPH), but I was so healthy I can't help but feel there is a cause to the problem. I've tried numerous meds that do not help. I have noticed that I do not have any positional symptoms, meaning the pain is the same regardless of my position. Anyone have some advice? Thanks.

-David

I'm 19 years old and fortunately for me, i've been headache free for about 5 months now. 4 years ago I woke up one day and just had this terrible headache. I figured it had to be due to stree, school, or head cold. I A few days later and my headache had not subsided, in fact it got worse. When I would stand up a sudden rush would leave me feeling faint and seeing black spots for a few moments. My mom and I finally decided to go see a neurologist about it after weeks of pain. They ordered so many tests for me, CT, MRI, Xrays, blood work, everything. To this day I don't think my neurologist looked at my scans because his cure for everything was meds. For most of my high school career I was doped up on some form of med that wouldn't get rid of my headache but just cover it up for awhile. When medicine became too much for me and I knew it had to stop. My neurologist then told me I probably had lymes disease and sent me to another doctor. The infectious disease guy thought I was crazy because there was no indication of lymes disease. I then went to a physical therapist for a few months because he thought it was a pinched nerve, turned out it wasn't. Going back to my neurologist he ordered a spinal tap for me which also indicated no abnormalities. Although for two weeks after my spinal tap I could barely lift my head off the pillow because of the pain. Finally I just gave up. No one was giving me any help so I just learned to deal with them. For two years I didn't take any medication or go to any doctors. When the pain became too much to deal with I decided to start over from scratch. I met with a brain and spind doctor at Princeton Medical Center in NJ. Mark McLaughlin took an hour with me reviewing all my films and medical work. He noticed two diverticula off my spine and ordered another spinal tap with MRI to confirm. When the results came back it showed that I did indeed have two spinal leaks. He reffered me out to Cedar Cinai Hospital to Wouter Shievink who was leading the research on this. He performed another spinal tap with MRI to confirm this and the following day I went in for a high epidural blood patch. The one negative thing about the blood patch is that I have to be extremely careful in everything I do not to tear it open. I had to give up playing lacrosse and working out just in fear of it coming back. I know that if the blood patch doesn't work they use a glue to close off the diverticula and if that doesn't work they perform surgery. My advive to everyone is not to let this go. I fought for years with my doctors who all thought I was making it up. They thought I was crazy for seeing black spots in my eyes. I feel amazing now, being able to stand up and not feel faint or have sever pains in my head. It's actually really nice now getting a normal headache and knowing tylenol will take it away for me. Talk to your doctor about it and make sure they are actually looking at the films and not just reading the reports. It's something that can be fixed. It's nice to know i'm not the only one out there. For awhile I thought I was an unusual kid with this random issue. Good Luck to everyone!

I could not believe what I just read. I was starting to question my sanity. I have suffered from a leak of CSF ever since I woke up over 3 monthes ago. I woke up early on a regular day to run errands and by 10 am I was suffering from severe neck stiffness, pain and this undescribable pain in my head. I never suffered from previous headaches let alone migraines. I went home and self medicated with advil and sleep. For the following week I woke up with the same symptoms. I was disabled and couldn't do anything but lay on my sofa. I couldn't work or take care of my 10 month old daughter. The pain would completely disipate when I layed flat. But when I stood up gradually the pain would grow to be so intense I would scream and cry. I finally went to a local neurologist and I was misdiagnosed with fibromialgia, posturial headaches and chronic migraines. I took the medication prescribed for 3 weeks with no relief. Meanwhile I visited the ER twice and continued to miss work. I felt no one understood or thought I was lying. My neurologist sent me for an MRI. The MRI showed little shadowing in my left temporal lobe and my meninges were inflamed. This meant really nothing solid he said so he had me check into the hospital. I stayed for 6 days being treated for an "intense headache". Then something weird happened. I had no pain level when they put me on a caffeine drip. It was the first relief I ever had. I spoke with a anestisiologist in the hospital who said I had all the symptoms of a spinal headache minus the time line. I had received an epidural when I had my daughter 10 monthes earlier from the onset of my headaches. I was discharged from the hospital and was told to go seek second opinions. I brought all my records to a Headache Center in Philadelphia. The specialist looked at my MRI pictures and told me they were consistent with someone that was leaking spinal fluid. She said that during my epidural the person who performed it could have caused a fistular before sending it straight in. This sistular would have weakened my dura membrane and it would have been just a matter of time before it ruptured. Possibly lifting and carrying my 20 pound child around. So I was instructed to have a blood patch done. I had the patch done the night before Thanksgiving. I have not had complete relief but some. At times I feel it stronger than other times. It no longer is positional either. I also have chronic pain in my lower back where the blood patch was done. I suffer from light headedness 24/7 and also dizzy spells. Recently I have felt them intensifying. Although I am functioning again I am still not 100%. I just hope this ends one day. It inhibits me from enjoying time with my toddler. I live in constant fear of it returning! I feel alone and frustrated. Good luck to all that also have had to experience this too!

Hi Carol,
I've read about your condition regarding your CSF leak. The only way to find out about location of your leak is through lumbar puncture and a series of MRI scans. These procedures are essential before they can decide whether a blood patch is crucial or not.

In my case, they are unable to perform blood patch on my CSF leak because the source is located at the C1 of my spine (the top of my neck) and they do not want to perform it bec it will be a blind spot for them to do blood patch. Very dangerous procedure and may cause paralysis if ever wrong. So they did a surgery on the back of my neck.

In your case, if blood patch is recommended would be good but there are chances that you may have to do it again if you get recurrent headaches (symptoms that your condition is going back to where it was before).

As for me, since after my surgery on Sept 18 & 19, I never had any headaches or migraines. I was able to stand up after 5 days and had complete bedrest for a month (bec of 2 surgeries). I am back to work after a month and back to gym after 1-1/2 month. If blood patch, I am sure it will be a week or less as they would just perform injection on your spine to cover the leak. You can also check with your neurologist.

You may need to take care more though bec in some cases, the tear that makes the CSF could come back depending on how straineous or stressful your activities are. I would say you may need to watch it for a year minimum. But of course, it is better not to worry much about it.

It really helps to read accounts from others. My severe headaches came on suddenly one day and I have currently been in hospital for 5 weeks, on bedrest, fluids and a cocktail of tablets. I feel very fortunate that my doctor has diagosed this so early on. As yet they have not found the location of the leak.

I have not had any blood patches yet, is this esential for the leak to be cured? How long until I can go back to work?

I am 33, I love sport and I am a PE Teacher I really would appreciate any advise on how long it will be before I am back to normal - if ever!! Once it is fixed is that it or do I always need to worry that it might happen again?

Look forward to any replies or any one who just wants to share their experiences.

wondering if anyone is suffering from pressure/pain when coughing, sneezing, straining or bending over? Is there anything i can do to resolve or lesson these? I have had two blood patches and these are residual symptoms. it did take two years for a diagnosis. Just like the all of us, I WANT MY LIFE BACK! please, give me any and all information you have. I feel like I am alone in the medical field and am tired of being treated like I am nuts! Thank you!

I'm 28 years old. Had Surgery on my ovary to remove a mass, and some lesions. A couple weeks after surgery I started having these severe headaches, dizziness, throwing up, and was so so sick. Was in and out of the ER. Had a CAT scan, they wanted to do a spinal on me, but I was like, no I'm just dehydrated from throwing up, just give me some med's and bag of fluid and I will be okay.

Then even IV of med's no relief of headache. Headache would not go away. Called OB GYN and all he and his staff would say oh you are going throug a change of life, or you are having a migraine, do you want some nause medication?

I got very frustrated, two weeks went by and still had a headache, was not getting any where with the OB GYN, and I KEPT telling HIM and his staff, I know my body, there is something wrong! Please, help me! I am not having a Migraine, this is much worse, I feel like my head was going to explode out of ears.

So I went and seen my primary doctor. After several weeks of having the headache, the headache had taken over my body. I was becoming dehydrated, dizzy, fatigue, and having muscle aches in my legs, arms, neck. I started having signs of MS. (Mulitple Scloresis) My primary doctor was very more concerned then what my OB GYN was and he sent me to a Neurologist.

Between the primary doctor and my neurologist they had me do MRI in which didn't show anything other then I had white flakes on my brain? Then the neurologist was like well you are having migraine. I was like I don't think I having Migraine, this is something much worse, I can't stand light, sound, dizzy. He gave me Topamax, and replax. These things seemed to help me control the headache a little better, but it didn't got away. I kept calling the DR's everyday and trying to explain to them. This is a headache that is 24-7 it doesn't go away for a second. I get woke up at night with pain!

So Lets get the timeline going. Surgery in September 9th, first headache October 5th, started seeing Neurologist November 4th. Still no relief from my headache.

November 17th, my Neurologist says I can go back to work. I'm like do what, how with this headache. So I'm like okay, I will try, and maybe with getting out the house maybe things could get better. So I get back to work. I get worse, WORSE, not any better. Two days before Thanksgiving I pass out at work. Day before Thanksgiving my Neurologist says No you can't work until we get to the bottom of what is going on.

Then the monday following Thanksgiving I have an appointment with my neurologist and he says well lets do a EEG and see if you are having seizures. I'm like what is headaches and seizures linked? So I go along with it. Test come back normal of course. Then he calls me and says well lets try some other meds. He puts me on more meds, this time this meds has me in the ER with chest pain, Left arm numb and pain.

At ER, they drug me, and the DR's there and stumped that all the drugs they are giving me is not knocking me out, and that I still have a headache. So I'm like do you see, I'm not crazy, I have this headache that is every second of my life like white on rice and it will not go away.

So then after my ER trip, me and my neurologist get into it. Because I feel he isn't trying to help me. That he keeps sending me in circles of tests that just make me sicker or don't get us any closer to helping me.

Then my neurologist calls me and says we are going to do some extensive testing ***DEC 8th, he sends me for scan of my neck to make sure I have no blockage and that the circulation to my head was okay. They also did a lumbar puncture and checked the opening and pressure of my brain. (LUMBAR CAME BACK NORMAL) (SCAN CAME BACK NORMAL OTHER THEN THEY FOUND A TUMOR ON MY THYROID)
***DEC 9th, he sends me for a sleep deprived eeg test. To see if i have seizures while sleep deprived. (TEST WAS NORMAL) This test of course made me real sick I was throwing up, had such a severe headache, because I had to stay up all night.
*** DEC 10th, he sent me for a tilt table cardio test. This was (NEGATIVE)
(But during the test the cardio doctor noticed and had me notice that when he had me lay flat on that table my headache was gone, but as soon as he stood me up or layed me down I had a headache.)

So then on Thursday Dec 11th, I get a call from my Neurologist that he believes that I have a CSF, that he is going to schedule me for a BLOOD PATCH. I was like okay.

Had my Blood patch on Thursday, and INSTANTLY had no headache. I was in SHOCK at first when the doctor asked me do you still have a headache, I was like um, I don't know. He said, it's either you do or don't. I said well no, it's gone for now, but how long will it last. HE said hopefully it will last forever.

So far my blood patch has worked. But, after living with that INTENSE headache for TWO months almost three months, I have neck pain, my jaw hurt for the first 48 hours, then my head just feels sore, it doesn't hurt it is just sore. My ears have been popping like I have been in higher altitude. My whole body is real sore. My back, is VERY sore, BUT I can live with it being sore as long as that headache don't come back.

My headache at the end got so bad that it effected my balance, walking, speech, and the clarity of my mind.

I feel so sorry for all the people that have had this for years. Hopefully my blood patch will work and I won't have to repeat anything. Now I just got to get over the mental suffering I have had from all the medical staff looking at me like I was crazy, and sometimes treating me like I was faking, or wanting med's.

I have called everyone, I have seen and misdiagnosed me or told me other and said do you remember me, the lady with the headache. Well I have CSF leak, that is the cause of my headache.

GOD BLESS you all! Hopefully more doctors will quickly diagnoise this then not.

For my CSF leak, it was cause my OB GYN during my surgery! I was actually having signs while in the hospital and they ignored me when I said my ears where ringing and itching.

Hi there, I have been reading this site and could not resist sharing my own experience just recently took place in Sept and hope that it could bring some enlightenment at some point to my fellow sufferers. I had been diagnosed with Subdural Hematoma due to Intracranial Hypotension caused by Spontaneous spinal Cerebrospinal Fluid Leakage (CFS). I have been suffering from dizziness, pounding headaches, migraines and nausea for more than 5 years. One of the doctors during the earlier consultations suspected of a brain tumor but did not do any further tests. I went to see other doctors but I was given only pain killers for headaches and migraines which was frustrating. 1 doctor did looked deeper in the problem and refered me to physiotherapy which gave me better results for the next 2-3 years.

However, my condition did deteriorated from July 2008, my headaches came back and this time they were postural headaches in addition to its pounding pain accompanied by nausea and vertigo. My work is disrupted, stayed in bed and unable to stand up for long periods. My headaches will go when I stay in bed and comes back whenever I stay up for over an hour.

It went on for a few weeks until I had suffered stiff necks and spasms I was unable to move my neck and shoulders for a few days. My new GP had asked me to have a CT Scan of my brain late Aug since I kept coming back to her. In early Sept I did had the scan and the clinic did not want to release me anymore since they found acute subdural hematoma on the results and I need to be rushed to the hospital.

I was under observation for a week by a Neurologist. I lay down in the hospital bed with my head lower than my feet for several days as part of the test. They did further CT scans a week after. Upon finding out that my condition had deteriorated further, I went under the knife on Sept 18 for 3.5 hours to get the hematoma out. The next day, I underwent several tests of Lumbar puncture and MRI scans for another 3 hours of torturing, injecting contrasts to various parts of my spine. In the afternoon, the result came back and found that the CSF leakage was located on the C1 of my spine so the talk of blood patch was out of the process and needed to have laminectomy the night of Sept 19 for another 3 hours which left a surgical wound of more than 7" on the back of my neck. It was a total pain but it's worth it!

I was in hospital for 3 weeks. The first 3 days I was immobilized completely and struggling to move my body doing log-roll when feeding myself and doing other daily routines. After 5 days of 2 major surgeries, I was able to get up eventually discharged from the hospital in Hong Kong. I was resting at home for a month.

The doctor was very professional, precise and accurate. He did a very good job at analysing my symptoms, my condition and my pains. The equipments in this HK hospital are very accurate and high tech. By end of November I went for my first CT scan after my surgery and the result was satisfactory. I never have any headaches or migraines up to this moment and I was back to work in November and back to the gym on mid Nov doing cardio and light exercises.

This site has been so helpful. Knowing that there are more people going through this and it is not some make believe thing. I am trying to get a blood patch.

My headaches started when I went over some very rough railroad tracks in my car. It felt like the inside of my head jolted forward while everything else stayed still. I went to a doctor a few days later cause the headache did not go away and it was much worse when I was up moving and much less when I was laying down. The doctor thought maybe a concussion and gave me some medicine. The medicine didn't work at all and I went back. They set me up so see a neurologist. I went and gave him all my symptoms and he knew what I had. I had never heard of anything like this before.

I had MRIs done of my head and neck and they didn't find anything. I am so tired of the headaches and my vision sometimes shifting. Now I am at the point where I am trying to get a blood patch, but we have to get the hospital to see that I need it.

Here's hoping that it all works out.

I have spent the last 3 hrs scouring this site and besides being edcational, I also feel relieved and hopeful. Remember the old TV shows where the announcer would state at the beginning "The story is the same,only the names have been changed"? We all have the same story of symptoms,the same frustrations, and the same HOPES (to be headache free and "real" human beings again) How grateful I feel right now to see I am not alone,that I am not crazed,just LEAKY.
I was diagnosed 5 yrs ago with Intracranial HYPERtension, then after various treatments that failed my NSG installed a LP shunt. Other then the occasional pressure headache 1 to 3 times per week, I was able to maintain, meaning working F/T, traveled extensively (biz & pleasure) all over the country, and most important was able to play with my 6 Grandchildren as they came along. They all range age 5months to 6 yrs old and they are the JOY in my life. With that said, when my Shunt became disconnected Apr '08 and quality of life started to quickly fade, I was anxious to get it repaired and get back to LIFE. Sounds reasonable,RIGHT?!
It took until July 28th to get the revision surg. and from that day to this I have not been able to be out of bed for more then 3-4 hrs before the pain becomes unbearable and the nausea/vomiting doesn't even let me keep water down. The tubing in the shunt is now freeflowing and due to the fact they have done a few lumber punctures I am guessing that I have a leak in the column as I have before,plus it kind of boils down to "ya know when ya know" that something is wrong. Also to add to the mix, Oct '08 it has been discovered via MRI,CINE MRI, that I have Chiari I Malformation. The only thing I don't know yet is whether I have a syrinx as I had on;y Brain,not spine MRI. In addition to all this I also have insane pain throughout my belly area that sometimes radiates down through my groin and around to my side and lower back. Even though my now "EX" surgeon insisted nothing was wrong in my gut, I insisted on tests, and during a evaluation with a Gen. Surg., it was discovered via CT scan that the shunt tubing is wrapped around areas of my intestine..plus..when they replaced the tubing in July they left the old tubing inside me to float around. So for now I wait for the NSG and Gen Surg to coordinate schedules so that I can have surg. again to add a valve to my shunt, take out and replace the tubing and do a in surg blood patch to fill the leaks.I truly do not know how anyone,anywhere could go through what we do without a sustaining Faith that we are all in God's hand! That is my prayer for each of you and I am asking to be remembered in your prayers as well.
In addition to prayer, I have also found a few natural aides that can help ease some of the symptoms. I still have to take my collection of meds for B/P,anxiety, and pain,,.. but try chewing 3-4 papaya pills a few times a day (works wonders for upset stomach) Ginger Root suplements for nausea 2x a day(zofran is the best nausea drug) also try B-complex,tons of fiber (to stay reg as pain meds can mess ya up) probably 2 pots a day of coffee (to help stave off headache) and most important WATER-WATER-WATER. Also because I throw up so much each day I stick to softer foods like pastas,soups etc and hot cereals for breakfast. I truly believe the bottom line is to educate myself, whether you have only 1 disorder or multiple like me. That and having a strong support team keeps my sanity. I have discovered alot of new food for thought in reading what has been going on with all of you, I hope by what I have shared, it will be encouraging to some of you.
God Bless each of you!
Beverly
48yrs in Oregon

I have had a csf leak for 8 years , saw Dr. Schievink for two glue patches - that failed and he says surgery is the next option. I was wondering if any one has ever had csf leak surgery with this doctor and how it turned out.

I'm drinking lots of water taking vitamins and also drinking a soft sparkling drink containing some caffine (Lucozade). I think the rest has helped a lot. As well as the above symptoms my head now generally feels quite tender and fragile. Im also taking a lot of rest during the day, well im doing handmade jewelry and that relaxes me.

I have had headaches for thirty years. Now they are daily. Mostly the pain is moderate to severe. there is a burning in my neck and it feels like acid burning on the top of my head. If i take enough percoset and fiorinal it will take it away. Laying down sometimes helps, but not much.I do have ringing in my ear but it started after I was neer a loud explosion about twelve years ago. My Doctor said I don't have a spinal leak becouse its not severe enough. My shoulders are always up and I am cringing from pain. Should I persue this as a possible cause.

Thanks Jim age 45

I went misdiagnosed for two years. Excruciating two years! Have spent a small fortune! I have been treated with two blood patches which were successful however, I now feel the pain slowing increasing. not only that but when I drink more than one glass of liquid I get knee dropping pain, (as if my head is going to blow) on the top of my head. does anyone have these symptoms or do I need to look another direction. It took me researching my symptoms which all leaded to a chiari malformation before I was diagnosed. The pain was unbearable. there is not much of a life with this!!! any suggestions will be helpful!! thanks much!

Wondering if anyone has continual ear symptoms as a result of a CSF leak? Ears constantly have a vibration and underwater feeling after a year from the initial leak. Get headaches everyday, not as severe as the first headaches diagnosed as a CSF leak. Thanks for any feedback!

Hi,
My name is Ashley. I am 25 years of age. I have had three lumber injections in the L-4 L=5. My last injection went wrong. I guess the third ones the charm. Yeah right. Well for some reason this injection took much longer than any of the others. He nicked something cause right after that my legs and back were tingling and hurting very very badly. So bad I started crying and he gave me another dose of lidocain to help numb it up. So he continued and hit something again. I have no idea what he could've done, but it hurt so bad! He had to give another dose of lidocain again! Well finally i couldn't feel much but was still in pain and was holding my breathe for the longest time cause I was so scared what would happen next. Finally it was over. Well, when i got home bout 30 min later I had the worst headache ever! I am not one for headaches or migrians but I couldn't do much of anything but try and get some rest, but I couldn't really sleep either. Well I took a hydrocodone to help with the pain in my back and head, but no help. Now this has been going on now for almost three weeks now. I have been out of work and have used up my sick days and vacation days. The doctor didn't want to give me a blood patch cause my headache didn't go away all the way when I laid down. So now I am seeing a neurologist and waiting now for 1 1/2 weeks for a mri on my neck and head. I don't know what else to do. Sometimes it starts feeling better and I think I can do things like wash clothes or dishes and then suddenly it comes back. I just don't want this for the rest of my life. Any solutions or opinions?

Thanks, Ash

I am so glad i found this site. I to have had a CFS Leak for many years. Yes it was leaking through my nose and into my throat. I couldnt lie flat as it would drip into my throat. My life has been turned upside down. 2 years ago after complaining to the medical profession about my dripping nose which i had for such a long time, i finally collapsed and was rushed to hospital. I remember my head being so sore, i couldnt stand the light and couldnt stop vomitting. I was diagnosed with a CFS Leak and on top of it Acute bacterial meningitus. They told my husband i was going to die as bugs had got in through the hole in my nose( CFS leak) and was attacking my brain. I servived that and was in hospital for 2 weeks and then sent home to recover there for 3 weeks. As the leak had stopped the doctors assumed the leak had healed it self. Finally i went back to work, still getting headaces and also i had no sense of smell. Then 10 months down the track my leak appeared and again i came crashing down with CFS leak and acute bacterial meningitus, and back into hospital. My life changed so much, do to my ill health i lost my job and almost lost my husband. It has been 1 year to the day that i had the leak fixed. It feels like i have being living a nightmare and its great to know that i am not alone suffering.I dont understand how I got a CFS Leak. What sort of job do you have to do to get this. Can someone please help me undestand how this has happened. Is there anywhere or place i can read more about this CFS Leak. I would be so greatful to any information i can get.

I too have this diagnosis and have since August 2007. I had the massive headache and extreme neck pain, water sound in ears and double vision for 3 months. The doctor in the ER could not figure out why my one eye was not tracking until they did the lumber puncture and found I had no fluid and then they did an MRI and it was noticed that my brain had sagged down onto some of the nerves at the base of the skull, especially nerve # 6 which affects the eyes thus causing my double vision. After 3 months my vision returned but I was on complete bed rest, only up to the bathroom for many months. I thought things were getting better and I was hoping to go back to work in September 2008 but in August I started sneezing one day and caused the leak to start back up. I am up about 5 hours a day at a time now but then I need to lie down because my head will be killing me and my neck is sore. I still have a funny beating or pulsing sound in my right ear when I am laying down and at times notice that my eyes seem to leak a bit when I am laying down. I have never had any blood patches but my neurologist said bedrest, avoid anything that puts pressure in the head ( lifting, bending, crouching, running, push/pulling ) and I have had lots of coffee as that is what they recommend. I am now 14 months since the start of this and although it is not as severe as the beginning, it is still leaking and some days it is hard to go on. I am on long term disability right now so that helps a bit.

I to am suffering from headaches, for 8 weeks now. All I want to do is sleep.Symptoms were worse earlier on, but now once waking up in the morning i don't feel to bad, but all the symtoms come back after approximtly one hour later after being in a upright position. I've been in and out of ER for 8 weeks now seen my doctor several times, but no diagnouses as of yet. My symtoms are of coarse headaches,lightheadiness, stiff and sore neck area, pain in around my eyes and behind them, tinnitis,loss of hearing, some vision problems, some confusion phone#s names etc. I am now off work because of these symtoms and am desperately awaiting some kind of answers from someone. My eyes also are glazed over the bottom of my eye lids are slowen and it seems one eye is open more than the other. Is there anyone out there that has similiar systoms?

I have had these headaches starting back in 2000. Seen many Neurologists that have not been able to treat me. I am in AZ now and have seen 2 Neurologists here that were no help and won't even give me pain killers for these horrible headaches. After the many useless CT scans and MRI's (with contrast) I have seen a Neurosurgeon finally who told me I have a cyst and my spinal chord is leaking fluid throughout my Cervical and Thoracic spine. I cannot do anything physical for it will trigger intercranial hypotension and I will be in bed for a minimum 6 hrs vomiting, otherwise its the tension headache pulling dreary feeling 24/7. Found this page searching for information on this condition, since it seems NEUROLOGISTS HAVE NOT A CLUE! Since I have no insurance and nobody will sell me any, I cannot get the recommended spinal tap and blood patches which seem to have failed numbers of people. Being 31 and living with this for 10 years, talk about being depressed. Also I have had the hearing and vision issues, dizziness, confusion, numbness, tingling sensations, irritability to say the least and the many other side effects this shitty condition brings along with it. I have no faith in this countries health care system, the Dr's I have seen should be stripped from their credentials.

I have recently been diagnosed with SIH after 2.5 years of taking more painkillers than I can remember!

I started with head pains in Jan 2006, and as I had never really suffered from headaches before, thought it was strange. I had had a car crash in December 2005, and never thought it might be related to that, as the head pains came on gradually over time. By Summer 2006 I found that if I went out to a town centre pub, I would get really intense head pains and start to feel sick. One time I was actually sick, just making it to the loo! I was so embarrassed, and told no-one. Since then, I more or less stopped going out, unless it was to friends for dinner or to a restaurant. If I do go out, I now take a pair of soft earplugs with me, and these help immensely. I also used to go to a fair few gigs, but I'm scared to do this now, as I get so ill afterwards. I went to see the Smashing Pumpkins in Manchester in February this year, I felt fine whilst there, but when I got in the car to drive home, I started to feel ill. I started vomitting, and it took me 2.5 hours to drive home, as I could barely see and I was being sick every few minutes - I live in South Yorkshire, so quite a long time! My GP had prescribed Migraleve a couple of days before, so I thought it was more a reaction to those tablets. Now I know it is a combination of the noise and lights that affects me, which is why I cannot go to town centre pubs anymore. I could barely walk down my drive when I got home - I was swerving and would have looked drunk to any onlookers! Had the police stopped me that night, I would have been charged with wreckless driving, I bet!

By May this year, my head pains were at their worst, and I had 2 separate days off work - I just couldn't move my head. Luckily, I sit down all day at work, so I think I have been able to cope with work due to being sat down all the time. By early June, my head was so bad, I ended up being off for 8 weeks. I couldn't stand for long periods of time - I thought I was going mad! I knew this was not classic migraine, as my GP suggested, but couldn't find nothing else that it could be. I got told it was stress, depression, the onset of the menopause - all sorts! My GP has prescribed me Migraleve, Amytriptaline, Cocodamol, Epilepsy tablets - all sorts! I have spent more money on drugs this past 3 years!

I eventually rang NHS Direct and spoke to a wonderful nurse who was so kind, that I started to cry, which is not like me. She also racked her brain, trying to think what could be wrong, and couldn't suggest anything. She told me to go to A & E. I felt so bad, that my husband took me straight away. When I checked in, I told the receptionist I had a severe headache. She said they couldn't see me for this, but could for head pains, so I told her to put that then - they were head pains to me - it felt like I had a metal skull cap fixed tight around my head! When I saw a doctor, HE told me I had a sinus problem, and to inhale steam 3 to 4 times a day! I told him I had been crying, which is why my cheeks and nose were a little tender, and there was nothing wrong with my sinuses - but off he sent me!

The very next day, I was going to see a rheumatologist for a follow up appointment. I told her I was well apart from my back aching and my head pains. I told her about the doctor at A & E saying I had sinus problems, she pressed my nose, cheeks and forehead, and said there was nothing wrong with them, as I had told him. She also told me I had nothing seriously wrong with my back, and that the joint pains I were suffering were probably due to my having been so flexible in my youth (I'm 42 now!), and the fact that I was laying down so much now - this being due to HAVING to lay down, because of the head pains! She told me to tell my GP to refer me to a Neurologist, as they were the only one's who could help me. So off I trotted to my GP - again! He still wasn't happy about me asking to be referred to a Neuro, so I offered to go private - bingo! £130 and I saw the fabulous Dr A Gibson at Parkhill private clinic, based in Doncaster Royal Infirmary grounds. I typed up a list of all my problems, symptoms, etc, so he could keep it with my file. He got me booked in for an MRI and when I saw him a few weeks ago, he told me I had SIH! Now, I had never heard of this, so would never have found it on the 'net, but now I have, particularly your site here, it's like looking through crystal!

I have another MRI at the end of this month, to see if the dura is healing, as I can now bend down again, as long as I am slow and careful. I still sit on the floor to empty and fill the washer, dishwasher, cooker, etc, I still wear my ear plugs when I need to, and I just generally take more time with just moving! I don't shout anymore (my 5 year old is pleased!), I don't take any more painkillers (they don't work for me!) and I'm looking forward to a full recovery (touch wood). At least I know that for me, if I get bad, I just have to lay down for maybe 30 minutes, and I feel lots better.

Dr Gibson thinks it may not be necessary for me to have a blood epidural, but had I seen him in May, instead of July, he would have kept me in there and then, and got on with it! All I can say is that I am quite untrusting of GP's now, and will be more forceful in future, as I have spent all this time and money, when one MRI would have diagnosed me straight away! I bet if you add up all the time for GP appointments, going to see a Rheumotologist, prescriptions, not to even think about time off work that it has cost my employer, it comes to thousands, instead of the £500 or so it costs for one MRI!

Thank you to everyone who posts on here, and for those of you who are suffering, or know someone who is, do post - someone may have a helpful comment for you! I have read and re-read all the posts, and they have helped me enormously.
xxx

Did anyone expirience smelling issues related to this illness?
I sometimes find that I smell burning rubber, but no one around me can smell it?

Hi all,

I just wanted to tell you my situation in case anyone has any comments / advice.

Just over 3 weeks I got a mild headache, I didn't take any medication and even exercised when I got home, lifting weights. During my "shrugs" I felt a tear which felt like it was behind my left shoulder. I went to bed and when I woke my headache was worse so I took a painkiller on arrival at work which didn't seem to help much.
The next day the headache was even worse and I felt sick when sitting or standing up. As soon as I got to the office I felt I had to lay down and found a disabled toilet I could lay down in. This was crazy so I went home where I vomitted and then went to bed.
The next morning I vomited many times and felt terrible when sitting or standing and went to see my Doctor.
He sent me to hospital for 24 hours when I had a CT scan (nothing found) and it was thought I may have viral meningitis. I was given some painkillers and because I felt fairly ok when lying down i was discharged, without doing a lumber puncture.

The next 10 days were hell however as I couldn't do anything but lay down which in turn gave me a sore back and neck. Everytime I tried to get up my head would feel worse and I would feel sick.

My doctor then gave me some anti-sickness tablets which stopped the nausea but the headaches remained and I felt constantly tired.

Eventually I managed to get an appointment with a neurologist who mentioned a cfs leak but because I now feel better (have a mild headache at the back of my head, and my chest hurts when I sneeze, and I've had the odd visual problem such as waking up to find my right eye blurred, which clears with a few blinks and some blurryness at the top of my left eye) he thought it was a migraine.

As well as the above sometime I get sproadic intense pains in various locations of my head only lasting about a second each time.

My sickness has now gone and I'm on no medication.

I have visited a Osteopath twice for my sore neck and back and the first time it seemed to help when he "cricked" my neck but the second time it seemed to make my headache a little worse. By reading the above on cfs leaks I don't think having my neck "cricked" may have been a good idea

I'm drinking lots of water taking vitamins and also drinking a soft sparkling drink containing some caffine (Lucozade). I think the rest has helped a lot. As well as the above symptoms my head now generally feels quite tender and fragile.

As I seem to be getting better I guess there is no point in having any more tests such as the MRI scan which has been mentioned many times above.

Does anyone have any advice? It's annoying when no Diagnisis can be easily found.

Also does anyone think it could be a cfs leak even though I'm starting to recover after 3 weeks?

I feel really sorry for anyone having this horrible thing as one of the main problems is no-one around you understanding, often thinking it's just "stress". It's also made me feel very anxious, especially at night when I have nothing else to think about except this thing.

One last question. My experience was that the headache started badly in the front of my head but after 10 days or so it seemed to move across the top of my head, to the back of my head, down my neck and now it's my chest that's sore when I cough. Has this happened to anyone?

All the Best
Adrian

Dear Jill and Elissa,

I was glad to read the positive stories and suggestions for what to do. I have had postural headaches since the end of July. They have now been diagnosed as being due to low CSF, but MRI has not confirmed the site of a leak. I am waiting for an epidural blood patch...... but am off to buy myself a neck cuff!

Thanks again - will make sure to post again if I improve.

Bindu

Does anyone out there have any experience of trauma causing intracranial hypotension some weeks later? I got ill 4 weeks after hitting my head badly on a glass door and have been ill for months. Could that have caused it? I just want to know why! Like many of you I was misdiagnosed as suffering from migraines and paid for a scan myself in the end.

Thanks!

I have had 3 blood patches in the last year non of them helped at all.....I suffer from CSF leaks...As I sit here reading these posts I can not tell you that its good to know that I am not alone in my misery...I am gong to see a surfeon in a couple weeks they dont know what else to do with me..I wish you all the best of luck....

Diagnosed at Mayo with multipule csf leaks in the dura. My Husband had headaches for years and was told it was everything from tension to migrains.He would have good months then the headaches would come again. We now know it was what ever activity he was involved in that wpold lead to the next headache. the year 2006 was one long #4-5 on the pain scale headache. We again tried all the Doctors with no real answer. Then in Febuary when it hit a 10 and stayed there he had to be flight for life to the nearest big hospital there again it was missed diagnosed as a migrain but when he got even worse, I demanded a trip to Mayo he was sent flight for life to St marys, part of Mayo, and finally found a Dr.(DR Garza) who knew what was wrong and better what to do. We now have to go back for a second patch this fall but just knowing whatit is helps you not feel like your going nuts. I know it is mostly women ..he is a man...1 in 50,000 need to lay down for some help... Noah has to sit up. He is atypical. He can sleep about 3-4 hours before he wakes up with at least a #4 then he sleeps sitting up. I tease him he can't even get a rare headache normally.

I had revision discectomy surgery in May 2006. I knew that there was a risk of 'dural tear' but I anticipated that my surgeon would recognize and repair the puncture before closing me up. He didn't and I was sent home the following day believing that the surgery had been successful. A district nurse checked on me at home and changed my dressing, saying that there was no sign of 'leaking fluid' from the wound. All good I again thought until I awoke in the early hours with a pain from hell (is the only way I can describe it) raging in my head. Actually, I honestly believed that someone had hit me over the head and split my skull in two with an axe or ice-pick, and I can remember even putting my hands up to the top of my head and feeling for the blood. I had been treated very poorly during my hospital stay and thus refused my husband asking if I wanted him to call an ambulance so I could be transported there for treatment. My husband and I had also agreed by this stage that I had a 'dural tear' headache and since he had previously done quite a bit of (i.net) reading on this subject, and had read that lying flat was the best treatment, this is what I decided to do. I had a second similar episode and when the third hit me I pleaded to be transported by ambulance to hospital. I spent about 11 hours at the A & E. Very little was done for me. My notes are disgraceful and reflect that a doctor attended to me on a single occasion. I was also sent to an isolation area later in the day because this was apparently "hospital policy". There even less was done for me (out of sight out of mind). My husband collected my vomit, mopped up my urine (he says I was incontinent but nurses ignored him telling them this so he found and put 'nappies' on me) and wiped my forehead and face. He insists that I had some form of seizure, perhaps even a stroke as he says he saw my face dropping downwards on the left side. He also says that I stopped breathing on at least two occasions and that he shook and slapped me back to life. I remember very little about this episode but can recall feeling a sense of surrealness and detachment, as if vacuumed in a bubble, and cut off from the world and everything going on around me. My hearing was very affected and I felt as if I was under water but every sound seemed louder and amplified somehow. I therefore begged for silence whenever my husband tried to speak to me. Concentrating took determined effort and made me vomit. I seemed to lapse in and out of consciousness as I have only "islands" of memory. Disgusted by the lack of care and tired of fighting to try and get me seen to, my husband suggested that I would likely be more comfortable at home than in the isolation room (which was actually a pre-fabricated box at the end of the kids observation area of the A & E). I agreed, my husband told the nurse what we were going to do and why, and then I got up and left. I had no further head pain episodes and thought the 'dural tear' had healed. I then had to return to hospital for treatment to an inflamed hip bursa and whilst there I went to the toilet, strained hard because I was badly constipated (sorry about the personal detail), and when I arose the pain hit me once more. 2+ years on and I am still experiencing head pain after any form of stretching, straining, standing or walking for long periods (usually my limit is about 3 hours). Thankfully though the pain is far less intense than the initial episodes, however, I am a changed person as I have a very poor memory, I suffer from constant fatigue (sleep for an extraordinary number of hours but never feel refreshed), I have bad nightmares often that make me cry in my sleep sometimes, I sometimes feel that a feather is being brushed across and down my left cheek (the same side that my husband said he saw drooping), I get mood swings and anxiety or panics attacks, I get tearful whenever I speak about my head pain and/or hospital experiences, and I am withdrawn and don't want to speak much to my family members. Although a single doctor at the hospital later stuck his neck out (so to speak) and went against what his peers said (that I don't have a 'dural tear') by confirming a 'dural tear' in a written report to my GP, I have not been properly diagnosed or tested 2+ years on. It was also a real shock to read my hospital notes and see that it had been suggested I see a Psychiatrist if my condition did not improve. Such is the way we 'dural tear' cases are viewed and treated.

After many years of tinnitus and other health problems, I have learned to use the internet to self diagnose. I hit the problem right on each time. Doctors don't usually like this, but I have helped more than one doctor to learn something new. Now this. Same thing as most - bad headache until I lay down. I mentioned I have had tinnitus most of my life and clear my ears often as they are always 'clogged.' I also began working out again after many years of other health problems finally resolving. I am wonderint if anyone has noticed an increase in the headaches from certain types of workouts? Also, I am being stretched out by a personal trainer and the two times I have had the headaches - noticed a pinching feeling in my lower back, followed within an hour by the headache. I am going to 'self cure' again. I stay still and on my back as much as possible, drinking plenty of water. I figure it is better than going through an insane number of doctors and expensive testing only to find out what I have I already know. These stories fit me to a tee, but I am concerned that this is the second time it has happened. Also very concerned about any tinntius worsening or hearing loss. I was told at the Cleveland Clinic, that it is most likely cochlear mennieres? Also, thinking the pressure in the ear could cause the leaks? Any thoughts on these 'self' diagnosis theories. I have learned my instincts are almost always correct. I would think, for those concerned about the tinnitus and hearing loss, that if the fluid levels are brought back to normal in the brain/spin areas, as well as the ear, that the ringing and dizziness and hearing loss would certainly improve. Hear is praying that more reserch is done so we can be less guinea pigs and more pro-active patients helping our doctors to help us.

Dear ELISSA,

I posted briefly what has happened to me after a spinal anesthesia. I am very much interested in knowing what kind remedies did the naturopath you saw thought would help mend your dura, and if possible if I can have he's info. I am willing to try anything until I can get these doctors to help me out here. Who knows maybe if I help myself in anyway I can my body will heal on its own before they decide to finally help me.

I have had this on going problem SIH, stemming years, always diagnosed as severe migraine headaches, ON 1 Oct 07 i suffered a severe pain and on set migraine which got progressively worse over an hour, i went to hospital ER, where they pumped me full of migraine medication and fluids and anti vomit medication, i got worse, after being there for 30 hours, i was told to go back to my GP, i was worse when i left the hospital, i had to be wheeled out, when i walked in., as there was nothing more they could do for a typical headache.I told them that i felt like someone had bashed me with a 4x2 and the pressure i felt in my head. still the sent me out. It took me 4 days to be able to hold my head up long enough to be able to get to the car and handle the motion of movement with little sea sickness feeling. 5 weeks go by and i am finally able to get an MRI with the help of my GP< with out his help i would probably still be in huge severe pain, after i had the MRI, nothing after that for 3 weeks when i received a letter from the neurologist, who gave me a prescription for antidepressants, saying they do more than work on depression, as i was crying and he thought i was depressed. I was crying because he told me there was nothing more he could do, 1 month later, i am admitted to hospital for another MRI and bloodpatch, 3 months later i had a follow up MRI, which showed a slight improvement, that they are now leaving me for 9 months, AND the headaches i will just have to tolerate. This is not good enough. he is happy to leave me on antidepressants x4 and my GPs regular regime of pills i take, pain x2, headache x2, anti inflammatory x2, anti nausea x1,sleep x2. I have no faith in the medical institutions here in N.Z and i am seeking other medical professionals to take up the challenge of curing me.I am dealing with the head neurologist in Christchurch and don't know where to go next, as all second opinions go through his office. I have also made an official complaint to the health and disabilities commissioner's office. I feel like i am the only person in the world, getting a bum deal from our medical professionals. I feel there is no one out there who can help me, and that i am alone. One excuse we were given in the hospital was that the specialists were still reading and they would have some answers for me... Nothing.

I am so thrilled to have found this site! I am a 50 year old female. About 15+ years ago I went in to my family doctor with a severe headache, neck pain, sensitivity to light. My eyes felt sunk in my head and I could only describe the pain as incredible pressure. I also had severe pain and pressure in the base of my spine. My family doctor told me he believed I had meningitis and they sent me home. That in and of itself seemed strange to me. I had had years of lower back pain and difficulty sitting but had broken my tail bone when I was 16 and assumed that was the cause. I had never went to the doctor and felt something must have healed wrong. About 12 years ago I was going on a girls weekend with friends from high school and was getting into my SUV and told my girlfriend I got an instant headache. It continued to get worse and worse as the weekend went on. When I got home I went to my family doctor and was told I had a migraine. I knew I didn't and someone suggested I see a back doctor. I did and he sent me over to the ER immediately as he suspected a subarachnoidal hemorrage. I had a CT scan and spinal tap. I told them that by sitting I could make the pain worse and that while on the golf cart and bouncing, I thought I was going to die or at least I wanted to. Nothing was found and I was sent home. Two days later I went to see the neurologist I saw in the ER and couldn't even stand in the lobby of his office. I told them if they didn't get me to a room I would have to lay on the floor of the lobby. After my neurologist saw me he ordered a bed and had me admitted to the hospital right away. A week worth of tests and finally an MRI which showed a sacral cyst/tumor. Was then referred to the U of M to a neurosurgeon who did a myelogram CT scan. He determined that there was a spinal leak due to the thinning dura wall where the cyst was. I had a blood patch and found immediate relief. Pressure was still there but I could walk again without having to lay down. My neurosurgeon at the U of M was the only doctor I had ever talked to who even knew anything about what I had. Shortly after I saw him he retired. I have had one other blood patch which helped. I still live with lower back pain at the base of my spine everyday and constant pressure in my neck and head. I too feel that sometimes my brain is trying to separate itself from whatever is holding it in my head and push it's way down my neck. At times my eyes feel as if they want to follow and just seem to sink back in my head. My lower back pain is always worse when the pressure headaches are worse. Nothing compares however to when I know I have a substantial leak which I have had 3 times.

My neurologist was unfamiliar with this situation but I was appreciative at his persistence and willingness to bring in other doctors to help find what was wrong.

Thanks to all of you for sharing your stories and allowing me to share mine. I am so sorry for your pain but am so thrilled that after all these years of feeling so isolated and misunderstood that there are people who understand how I feel. Thank you for sharing your stories!

My severe head pain started late February 2008. At the time I had a sinus infection that my General Practioner (GP) treated with antibiotics. After antibiotic treatment my severe head pain remained but sinus infection went away. I was sent to ENT to see if I was a candidate for sinus surgery. ENT after several visits and CT scan of sinus said my head pain was likely not sinus related. I was sent to neurologist who performed a sleep study and said I had sleep apnea. I also was searching the internet for severe head pain and all web sites were about migrains, tension headaches etc. but no reference to SIH. This was all I could take because my head pain was severe and so bad on some days I had to miss work (I do a great deal of traveling by air). I insisted my GP do a spinal tap to see if I had a brain infection. He also ordered an MRI without contrast of my head and neck. All tests were negative. I then insisted my GP refer me to Mayo. I arrived at Mayo on June 4th and they did an MRI with contrast and found the problem (SIH). It only took 2 days. My brain was sinking in my skull and I had two areas of fluid accumulation on the top of my brain. Next Mayo ordered a meylogram (dye injected into spinal cord with CT scan) to find location of leak. They said once it is found, they could do a blood patch or use fibrin glue or surgery as last resort. Meylogram showed no leak in visible part of spinal cord but there was a suspicious area in the part of the spinal cord inside the brain. I met with a neurosurgeon at Mayo to review meylogram results and he said they cannot do a blood patch or surgery in that part of my spinal cord as risks outweigh gain. I go back to Mayo on July 28th for a cisternogram with pledgets. If the leak is indeed in the brain, Mayo will try a general blood patch (however they indicate it generally is not successful unless blood can be injected at the site of the leak) but it is worth a try. In the meantime I was ordered to seek bed rest for the next 6 weeks to see if it heals on its own. The last two days I have developed nausea, and numbness in my left arm and leg. The severe head pain, sore neck, sore eyes and loss of hearing remain even when lying down. My heart goes out to all of you currently suffering from SIH and for those who have suffered and recovered. It finally felt good to get a diagnosis but I am still searching for my own recovery and I hope it comes soon as I cannot continue to live this way. Has anyone been given medication for pain and nausea that has worked? My pain killers are ineffictive.

I have a Spontaneous csf leak that started in march of 08. I woke with what i thought was a runny nose,but have since found out that it is a csf leak coming out my nose.I didnt have what you call a bad head ache untill they started tests to find were in my head the leak was coming from now i have head aches,havent got answers yet hope to on monday. Has any one else started with a csf leak this way?

This occured to me in 2002 at age 45. I woke up one morning with a very severe headache and what seemed a very sore neck. The Dr assumed it was a muscular strain in the neck and had me do neck excercises which only made things worse.

I tried to work but after a week of severe pain I developed double vision and ended up in the hospital where I had a CAT scan which revealed nothing. My wife insisted that I go see my opthomologist who referred me to a nuero-opthomologist. He immediately diagnoised the problem and after MRI w/ contrast was able to confirm the leak. Six weeks of bed rest and I returned to work. After a few months the double vision went away and I was good as new.

I see many of you have had far worse experiences than I and I feel extremely lucky to have had it diagnosed in 2 weeks time as opposed to some of the above ordeals. Best of luck to all.

My wife went in for surgery on her back. Long story short, she is on her 3 CFS leak. The last was only a week ago and she woke up the next morning after her 2nd patch with another leak. Her nourosurgeon has never even tried a blood patch. Is it something I should bring up to her doctor or is his feeble attempts to derm patch fixes the only option? Pls respond soon. TY and best reguards to all of you suffering from this and similar situations. God bless you all and thanks once again.

3 weeks ago today, my wife was taking a shower and had an instantaneous, extreme headache come on. She is a tough one and continued with her regular schedule for the next 3 or 4 days. The headache was classic for this condition we are discussing...goes away when spending time horizontal (sleeping, etc) and would return with varying severeness once she got up and about. As with most others on this thread, she had no previous history of headaches other than a periodic one that could be knocked down with some OTC meds.
On the 4th day of the headache I had her go to the Doc. He checked her out and sent her to the ER for a CT and to check for menengitis (sp?). Both were negative and we went through the next weekend praying for some relief. After a couple more days, we went back to the GP who sent her down for an MRI of the head and neck area...nothing. The GP then got her set up with a neurologist the next day (Can you believe it?) The neuro immediately diagnosed her with the low CSF condition and ordered another MRI and put her on strict bedrest. 3 days bedrest and no headaches, the doc told her to try a "normal" day...headache returned.
They scheduled her for a "broad area" Epidural Blood Patch 3 days ago...the headaches seem to be gone although she has suffered EXTREME back pain since--it now seems to be subsiding.
Many of the stories have made me quite sad to read...it seems the docs are only now really getting a good handle on diagnosing and treating this condition. We have been truely blessed to have had to deal with this for "only" 3 weeks.
Our best to all...

Yeah i have been sick the last couple of days, and i was in the bathroom vomiting and all of a sudden i had a really sharp pain in the back of my head, like somting bursted in the back of my head. I dont know what the problem was. I ended up trying to sleep it off. I woke up and it only hurt a little bit. I can still feel it right now. I was wondering if anyone knows what the could of been, And to see if i am safe. Thank you

I was in Iraq in 2006 when I woke up to most unimaginable headache. I thought I got shot in the head. After a week in a combat support hospital, a CT scan and spinal tap, I was shipped to Germany. MRI in Germany, but still no diagnosis. The pain upon standing was still severe and vomiting. Then I was shipped to WOMACK Army Hosptial and more MRIs. After weeks of hospitalization and not being able to stand or bearly sit up I begged to go to a civilian hosptial. After only 20 hours in UNC I was diagnosed with a CSF Leak and given a blood patch. Not sure if it was the patch or 40 days in bed, but it gradually subsided enough for me to leave the hospital.
Two years later I still have headaches but nothing like the intial onset of the CSF Leak. Neuro doctors are trying some meds but no relief yet.

In Dec 2007, I started with a bad chest cold and sporadic tiredness. Family GP threw meds at me and after the prozac and xanax treatment, i switched to Internal Med. 2 days before the appt with my new doc, I felt an explosion in the back of my neck. about that time, I had a VERY sore neck and then the postural headaches started. she checked me out and ordered a CT, which found a pituitary tumor. Then I went for an MRI to size-up the tumor (10-12mm). Labs were run and the mass "was not affecting me chemically." i have seen an endocrinologist, a neuro-opthomologist and 3 neuro surgeons. luckily the 3rd neuro surgeon figured out that I must have a CSF leak. He ordered a brain MRI (lying down) and a lumbar puncture (opening pressure 16 - should be between 12 and 20?). I am trying a neurologist and just had a cisternogram (over 3 days), which showed nothing, even though I cried when I had to sit up for hours before the scan, to aggrevate the leak. The neurologist has put me on prednisone, amitriptyline and celebrex. he encourages bed rest and well, he's just not sure. i am 35 with a 5 and 7 year old. i have been home from work 3-1/2 months now. is the leak related to the tumor? will this heal by itself? will it happen again??

In March of 2007 I had a hip replacement at a very well known hospital
in Illinois. I am a nurse in a family practice office in Indiana so I
felt very fortunate that my insurance would cover my surgery at this
facility. Three days afyer the surgery, which went very well I developed
this horrible pain in my head at about 11 on a 1/10/scale. I was discharged
and ended up hospitalized locally in Indiana. I had two blood patches with
no relief so my doctor felt I should see a neurologist. He ordered several
tests and they discovered a small aneurysm in my head on a MRA scan. I was
again referred to another hospital in Illinois. That was in May of 2007 and
my life has been a nightmare ever since the hip surgery. I spent all spring
& summer having angiograms,cat scans, mylegrams and being bounced from one
Dr. to another with no answers. Some of the Dr's felt it was the aneurysm
and some did not. After trying numerous meds with no relief it is now 15 months
later and I have not had a day without pain. I had just about given up when my
boss who is also my family Dr. suggested I see another neurosurgeon locally.
I did not want to see any more Dr's especially since some of the Dr's I have
seen made me feel like I was crazy. I am not critizing the Dr's in Chicago
but it is so ironic that a local Dr. seems to figured out the problem. I hope.
He is sending me to a neurosurgeon at Mayo's. He said immediately that he felt
it was intracranial hypotension caused by my epidural. I am so tired of being
in constant pain, this has totally changed my life. I cannot do any of the
things I used to do and work is becoming more & more difficult. Until he told
me about this condition I didnt know there are other people suffering with this.
I am praying this trip to Mayo's will solve my problem.

Paula

Severe constant headaches for months with the CSF going down her throat. Nausea & Dizzyness, etc. etc.
Was admitted to headache clinic for a week and concluded it was CSF but didn't suggest surgery. Said it would heal on its own. Not one person or article has talked of the CSF fluid going down the throat. (Only out nose or ears.)
Need help!

Has anyone else had strange bubbling or wooshing sounds at the base of your skull when laying down and it seems like it is loud enough to be audible to others around you? Mine feels like it's going up into my skull. Do you get headaches shortly after the fizzing? Anyone?

If you have a leak or suspect a leak and want to learn more about them, talk with other leakers, get good research, find out others experiences, etc. This board is a great tool and full of people who are sympathetic as most of them are leakers themselves!

Brain Talk Communities - Cerebrospinal Fluid (CSF) Leak

http://brain.hastypastry.net/forums/forumdisplay.php?f=126

If you can't link directly or cut and paste addy to get there; do a Google search for:
Brain Talk Communities - Cerebrospinal Fluid (CSF) Leak

I am just recovering from a spontaneous CSF leak. I, too, had all the symptoms described above - nausea and vomiting, dizziness, severe pain in my neck and the back of my head, achy shoulders and upper back, loss of hearing, and a soft flushing sound. At times it sounded as if I were inside a conch shell. The headache was postural: fine when I would lie down, but crushingly painful when I would sit or stand. I couldn't work; I had to lie flat for 3 weeks. Two days ago, thanks to an MRI, the leak was found. Just yesterday, I received the blood patch and am on the road to recovery. At this point, I am most interested in finding out why this happened, so that I can try to prevent it from ever happening again. One doctor told me it can happen just by lifting 30 pounds. Another doctor said that there is a 30% chance that it will happen again. I would like to know how to strengthen the membrane and whether I can take any other actions to help prevent a return of this condition.

My sister has been bed ridden for the last month and I have been looking after her 2 children because she has suffered similar symptoms to the ones mentioned above.
Almost 4 weeks ago she woke up with a sore neck and pressure in her head that only reduced when she lay down.
By the next day she was in incredible pain and I rang an ambulance fearing she had a brain tumor or an burst blood vessel?? the only relive she got was from laying flat, any sitting or standing caused vomiting deafness pressure behind her eyes and severe pain in her neck,shoulders and head.
she spent 2 days in emergency then was admitted for tests including 2 lumber punctures that produced no fluid (failed) mri and cat scan.
Eventually after many doctors she was told that she had a spontaneous spinal leak and was given a blood patch. This gave some relief but 2 weeks down the track she is still bed ridden and her job is in jeopardy as well as her children being in my care.
Doctors are now saying she has tension headaches and these can last up to 2 years...They have prescribed Valium to reduce the head pain as well as panadol forte and endone.
I hope someone can help out there as she is only 32 and there is so much more life to live/

I am a 46 yr old woman and i started having reacuring headaches in feb,2007,i went to the optitions and was given clean bill of health for my eyes,my headaches came and went,then in may 2007 i had severe migraine headache i spent 3 days in dark room, i went back to work and within a hour of working the migraine headache was so intent and severe that i collapsed at work, i went to the emergency Dr's he diagnosed an inner ear infection,the next day i visited my own GP and he put me in touch with a nurologist,i had an MRI scan and he diagnosed SIH as i have never suffered with migraine before, since then i have had two lumber punctures, MRI's with contrast dye,caffine infusion, blood patch,isatope cisternogram, with no outcome i have just had a ct mylogram with MRI scan and am awaiting the results of this test.I still have migraine like headaces on a daily basis when i am standing or moving around i have ringing in left ear, feeling of nausea, and constantly feel the room is swaying and spinning when eyes closed, and need to wear sunglasses in daylight, when headache at worst it feels like my brain is being pushed down into my neck which then makes neck feel stiff. Hopefully the tear will be found soon and i can get back to normal in the last 10 months i have lost my job and am now on benefits as i can not work i feel phisically dissabled by this illness

I had a CSF leak when my son was born, 9 years ago. It was due to an epidural and my vertebrae was shorter than average, so they punctured too far. I was in pain for about a week--headaches, stiffness, sensitive ears. I got a blood patch done about a week after he was born and I thought all was fine. The headaches immediately went away and never returned. But my hearing loss has never returned to nornal...is there anyone out there that has experienced this? I didn't notice the hearing loss because it was gradual. Also, the ringing has never left either. I now wear hearing aids, I'm only 36 yrs. old. My right ear is sever loss and my left is moderate. If there is anyone out there that has any ideas on if my hearing loss is treatable, I'd appreciate a reply or response. I didn't realize till now, explaining my hearing loss to my chiropractor that it could be connected. I've not asked my doctor as of yet, since I just thought of it today. (I will be giving them a call soon). I'd appreciate any positive comments. thanks....rustiemom@gmail.com

Several years ago, I was shopping when I felt a 'burst' in the back of my head...lower left skull. I assumed that I had had an aneurism and that the burst, or gush of liquid inside my head was blood. I had several tests, and no diagnoses was given at the time because tests came back negative. For the following 8-10 days, I was unable to get up out of bed because standing up was excrutiatingly painful. I got up twice per day...both times to use the bathroom. I would run to the bathroom, lie on the floor for a few minutes, get up to use the toilet, lie on the floor...then make it back to my bed. In a reclined position, my severe headache mostly subsided.
After much research and news of a relative with a severe positional headache following a spinal tap, I came to realize that what I had was a case of spontaneous spinal leak.

Have your doctors consider/rule out a few other things:

1.Connective tissue disorders (if positive avoid LP's)

2.Tethered spinal Cord (low lying conus, Lumbar)

3.Cervical Instability

DO YOUR HOMEWORK research the above and ACM

Any of these (plus hypo and hypertension) can cause a chiari malformation, ask radiologist to look specifically for herniation many ACM's are missed first reading. If positive you still have to find the cause. Many chiari's do not require surgery. Check the above and consult a Chiari expert before any surgery. Don't mess around, the longer you wait the worse it gets.

(2 posters above have a bad Chiari)

I had suregery for a discectomy in nov 2004. I have had a CFS leak 2 days after my surgery. I was sent home the same day as my surgery as they had no hospital beds. Two days latter I was sent back to emergency room, tested positive for CSF leak. I layed in emergency room 2 days with no meals, had to hobble to the rest room. It is now 2008. I think the leak was never "fixed" and I can't get Kaiser HMO to take me seriously. I wake up with migrains, feel nausea, lower back feels like it is on fire at times. I now suffer from dizziness, sinus trouble, sleep apnea, my head and neck make "crakling" noises when I move, had 2 sezures at home alone. Also numerous episodes of the room spinning when I open my eyes. I need help and can't get taken seriously. I am now on disability.