Hi there!

It's been quite a while since you posted this, so I don't know if you'll get this response, but I would love to ask you some questions.

I have had a post lumbar puncture headache resulting from a myleogram for 8 weeks now. I had a blood patch on day 3 which took the headache away immediately but only lasted one day, and a second blood patch at week 6 which didn’t work, and actually immediately exasperated my symptoms.

I've seen two neurologists about this. We've ruled out a secondary headache, spending four days in the hospital receiving doses of DHE (a massive migraine medication). I had also spent another three days in the hospital the weekend before receiving fluid IVs. None of these treatments helped my symptoms at all, and they are still very positional.

I had an MRI of the brain with and without contrast which ruled out any major complications (i.e. subdural hematoma) and did not show menigeal enhancement. Based on my MRI, one neurologist I saw recommended a conservative approach of waiting this out, in the expectation that my dura will eventually heal. He did say if it got worse to go in and try a 3rd blood patch (perhaps flouroscopy-guided) before I did anything more invasive.

However, another neurologist I spoke to wants to do a myelogram to test the pressure of CSF and attempt to locate the leak. I am extremely leary of doing yet another lumbar puncture right into the dura, which could result in yet another leak.

I have done a lot of research online regarding all of this, and my personal thoughts are in alignment with the more conservative treatment. It seems as though sometimes more lumbar punctures can result in more leaks, and blood patches (and even surgery) don’t always heal it. I really want to wait and see if this thing will heal on it's own.

Reading your story gave me so much hope! It is one I am holding on to with dear life and keep coming back to read every few days for inspiration.

Like you did, I am lying FLAT (only up to use the restroom), drinking tons of water (and gatorade), popping vitamins (amino acids, vitamin B complex, vitamin C, MSM), eating a lot of protein and healthy foods (even though I don't have an appetite), keeping up on my caffeine, and have an abdominal binder on. I have been doing this for 2 months now... (I also just started on a steroid pack this week.) I keep hoping all of this is going to help heal my dura soon!

I have noticed an improvement of my symptoms over the past few days, which I'm hoping means this thing is healing up. However, over the course of this I've had two different peroids of improvement which resulted in two set-backs because I think I tried to push it too fast. (I went for a ride in the car, which made me much worse both times and took a week or so to recover from.)

SO this time my plan is to STAY FLAT until it's gone. (I guess unless it just doesn't heal and I have to take more aggressive measures...?)

I guess my question is this:

Did you ever have peroids of improvement where you thought you were getting better only to result in set-backs? Were your symptoms fairly constant or did you feel an incremental improvement over those months? What did those last 3 weeks feel like? Were you a little better each day? Or was it more like each week you noticed you were a little better? You mentioned that one morning you woke up feeling fine - you knew something had happened. Was it a severe contrast from the day before? Or did you have a feeling you were gradually improving up until that morning? What were your symptoms like during those last 3 weeks? (when you did get up)

If you wouldn't mind responding, it would be SO INCREDIBLY helpful! As you know, this is a very difficult thing to go through...

THANK YOU for your time and encouragement!

Mindi