Spinal Tap experiences? Possible IIH

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Jun 2014
Total Posts : 50
   Posted 8/27/2015 3:04 PM (GMT -6)   
Hello all,
22 y/o F - 28 month constant headache, tinnitus, eye pressure, light sensitivity, nerve pain, nausea, the works. Finally I skyped with a top NY neuro surgeon who found an abnormality in my oldest brain scan,,, and MRV from TWO YEARS AGO! Better late then never I guess :/ .. anyway, there is too much pressure on the left side, and could very well be Intracranial Hypertension.

The next step is a spinal tap. Ive had everything from medicinal leech treatments, to dozens of cranial injections nerve blocks, etc… but nothing worries me more than this. I'm not worried about the pain/sensation.. I am worried about the risks involved (my health is terrible right now to begin with, and i have EDS hyper mobility and Factor V leiden a blood clotting gene). I'm so scared it won't go well, that I will have to get a blood patch, etc etc. I don't want to worry but just knowing my body, I can't help but feel its going to be a miserable procedure.

I'm doing my best to push out the negative and think, wow, this could give me the diagnosis for the first time in over 2 years. I could get my life back. (And the tap could help with the pain temporarily!)

Please any advice and support. thank you.

New Member

Date Joined Nov 2013
Total Posts : 7
   Posted 9/1/2015 1:31 AM (GMT -6)   
Hey, we've talked before.

At least its something to try, and a possibility.

On my adventure to get my eventual diagnoses of migraine, they actually thought I had something called Idiopathic Intracranial Hypertension, increased intracranial pressure for no apparent reason because all my scans were clean. My Neurologist thought he saw swelling in the nerve behind my eye, which was a sign for this. So they wanted to do a spinal tap to check the pressure, and to run a couple tests while they could.

So I got a spinal tap about two years ago now, now granted I don't have as many health issues as you do, so it might not be the same. The procedure itself went well, the staff doing it were great. I wouldn't say its a horrible thing to go through, there is like a moment of discomfort, but then its okay and tolerable. Though I'm not in a hurry to do it again. But mine actually did relive my pain for about 24 hours

I found the hardest part for me, is the for the first 24 hours afterwards, they want you laying down as much as possible. And then I pushed myself a bit after that, and I think that is what led to me needing a blood patch, I got spinal headaches (Which were worse than my migraines! And that is saying something!) The actual procedure for the blood patch is SO SO SO much easier than a spinal tap, so for the record if you do end up needing one (And hopefully you don't) it really isn't a big deal. Its like getting a shot, its quick. You have to stay laying for a bit, but if its what you need, it helps right away.

The best thing to do, is to really try your best to think positively, focus on the good. That this COULD help with a diagnoses, at the very least it will rule things out, it could help with the pain (which is greatly needed). Focus on those things, and don't let the fears get to you. Because if you do, you'll only freak out more than you need too. I know before my own spinal tap, I was freaking out the entire week before, and I realized afterwards I really didn't need to.

So hang in there, think of positive things. If you have any questions, let me know.

Regular Member

Date Joined Jun 2014
Total Posts : 50
   Posted 9/10/2015 1:15 PM (GMT -6)   
Thank you, I remember you. I didn't do the DHE as theres no way my body could handle that nor do i wish to endure more torture, for a little chance of it helping me.

I can't do the spinal tap (for now) because my neuro surgeon here says its way too risky for me due to various reasons. We tried Diamox, couldn't last more than two days,, Got a horrible headache that seemed to be from diamox don't know. want to die. Next option is mayo clinc.

New Member

Date Joined Oct 2015
Total Posts : 14
   Posted 10/7/2015 9:04 AM (GMT -6)   

I recently got a spinal tap done. Like eaty93, my neurologists thought I may have Idiopathic Intracranial Hypertension. I did the spinal tap at Johns Hopkins in Maryland. I have been going to them, apart from various other neuros and doctors for 3 years now for my Chronic Migraines. There is a moment of discomfort, but definitely not one of the worst experiences I've been through. I tried the 5 day in hospital DHE treatment. That was one of the worst experiences, in my opinion. I do not have the medical issues you have, so I'm not sure how you may respond to this treatment. After the 2nd day, my veins were so sore from injecting me with the DHE medication, that they ended up having to switch the IV to several different veins each day (sometimes several times a day) because my veins couldn't handle the amount of meds they were injecting me with anymore. After leaving the hospital, the DHE brought my migraine down to a level 2 pain, when I regularly have a 6-7. My regular 6-7 migraine quickly came back once I was out of the hospital. I have heard it does help some people, but unfortunately, it was not worth the pain I had to go through.

I am not too familiar with Diamox. What type of side effects did you have? I'm afraid I've been on almost everything that they could prescribe and am myself looking for other options.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 2:22 PM (GMT -6)
There are a total of 3,005,706 posts in 329,254 threads.
View Active Threads

Who's Online
This forum has 161797 registered members. Please welcome our newest member, paulwhiff.
269 Guest(s), 9 Registered Member(s) are currently online.  Details
JayMot, bobmars, HeartsinPain, ICantTrustMyGut, JNF, ppm guy, cashlessclay, sebreg, F8