Intracranial Hypotension/Hypovolemia Caused by Topamax

What is it, time for me to see how many random ailments I can rack up within the shortest time frame?

After research, I’m confident enough to say I’ve figured out this very peculiar headache I’ve gotten the past few days. I think I know now why the headache I got two days ago didn’t respond to meds like they usually do. Because it happened so close to my flare days, and was just as painful as they usually are, I didn’t think much of it. But yesterday, when it persisted, I really, really thought something else was going on.

Yesterday, I felt fabulous. Finally better! However, my head continued to ache when I sat up, and got extremely painful when I stood up. As long as I was lying down it was barely noticeable. It hurt on the top of my head, a sensation I’m not entirely unaccustomed to–I sometimes get this with my occipital neuralgia attacks. But this was different. I tend to say it feels like there’s not enough oxygen/blood getting to my brain, because it’s so obviously a pressure problem… But what I didn’t realize, was that the pressure in your head can be something seperate entirely! These orthostatic headaches usually happen to me when my overall blood pressure is low, and you can literally feel all the blood come rushing away from your head. But as I said, yesterday I was fine, with the exception of my head hurting… I knew there had to be a name and an explanation for this, so last night I set out to find what it was. I couldn’t help myself, being a researcher at heart.

WELL. It turns out, I am most definitely suffering from low intracranial pressure, thus causing a headache because the decreased pressure isn’t enough to keep my brain properly suspended, resulting in it giving in to gravity, if you will, and literally pressing against/into the hole at the bottom of the skull (known as the foramen magnum), where the brain and spinal cord meet. It makes perfect sense as the why it hurts so much, yes?!?

“Headache resulting from the removal of CSF with subsequent decreases in intracranial pressure (ICP) is a well-known phenomenon.  This most commonly occurs after lumbar puncture (LP), but may occur spontaneously or as a result of trauma.  The headache is usually worsened by sitting or standing upright and improves or disappears with lying flat.  Pain is steady, often described as pulling, and occurs most commonly in the vertex [top of the head] or occipital [back of the head near the neck] regions.  Nausea is common and transient 3rd or 6th nerve palsies have been reported.  Nearly all of these headaches will resolve spontaneously over several days.  Bed rest and fluids are recommended but have not been conclusively shown to speed recovery.  In cases occurring after LP that do not resolve with conservative management, autologous blood patching in the epidural space is indicated.”

I guess even the random nausea that I mentioned last post also makes sense, now.

This is the same type of headache I got the day after my first neurologist visit, where I said, “It’d be risky to get a spinal tap because I already get symptoms of the type of headache you get after them, the ones that are supposed to tell you whether or not you need a blood patch to stop a CSF leak. If I get these headaches anyway, how am I supposed to tell whether or not I’d need a patch?!” Not having had any recent spinal taps (I had one many, many years ago), I figured there had to be some other explanation for the headaches…but it turns out you can get decreased intracranial pressure without having had a tap.

Interesting bit of information: Remember last post when I said my eyes haven’t twitched since April?  Well that time in April was the day after my neurologist visit, the last time I had this intracranial headache! I was so relieved to find that out, because it probably means the extreme twitching I got those three days was instead a neurological quirk from the nerve irritation and not a bug flaring, this time! :D (It also explains why I’ve had so much trouble focusing my eyes the past few days–they seem to want to go all over the page, which is yet another symptom of this low intracranial pressure.)

It also, and perhaps most importantly, explains another strange phenomenon I’ve had the past several months: Sometimes when I take my Topamax, it actually GIVES me a headache. I found out last night that.. Topamax can decrease intracranial pressure. :((( I halfway wonder, now, since I started it in March after I got out of the hospital, if this is why I’m having these issues at all! Since I’ve been wanting to quit it for months anyway, I am promptly weaning myself off of it–which, please, I wouldn’t recommend for people who don’t know what they’re doing!–but because of my medication sensitivity, I only ever got up to 25mg. I’ll take half for one week, and then cut it into fourths another week, to be sure. Hopefully my migraines won’t relapse, but even if they do, I’ll have to find another treatment. I still have Imitrex in case I get any of those semi-dangerous retinal migraines.

I’m kind of horrified, but also kind of excited by this. First off, I know what it is now, so I can properly treat it. (Read as: I will lie down instead of being stubborn, before it gets to the severe stage!) The only thing I need to figure out now is…why are they happening? Is it truly the Topamax? Or do I actually have some sort of cerebrospinal fluid leak? That would certainly need to be fixed… Do the infections aggravate it or is it just coincidental timing? I guess it wasn’t really coincidental this time, because it persisted even after the flare, which is what allowed me to notice something wasn’t right. I know I still have bugs to fight, but I’m semi-excited at the possibility of some of my more strange symptoms being potentially caused by a thing they can actually just go in, find, and fix. Maybe some of my autonomic symptoms are being aggravated by this? Ha, is it strange to almost hope you have a cerebrospinal fluid leak?

Please note I NEVER recommend Wikipedia for health information, but once in a blue moon, their information is accurate:

“A spontaneous CSF leak, as opposed to traumatically caused CSF leaks, arises idiopathically. A loss of CSF greater than its rate of production leads to a decreased volume inside the skull known as intracranial hypotension (ICH). A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, and facial weakness, amongst others. A CT scan can identify the site of a cerebrospinal fluid leakage. Once identified, the leak can often be repaired by an epidural blood patch, an injection of the patient’s own blood at the site of the leak.

Some patients with CSF leak will develop headaches that begin in the afternoon. This is known as second-half-of-the-day headache. This may be the initial presentation of the CSF leak or appear after treatment, and likely indicates a slow CSF leak.”

The “second-half-of-the-day headache” really matches this so well, because I have woken up with no headaches, but the more I’m awake (i.e, the more I’m upright), the worse it gets. On the other hand, my infection flare headaches usually do the opposite and get better by the evening, and respond to medication–unlike these. And they feel more akin to a brain swelling than this bizarre lack-of-oxygen feeling.

I think I mentioned last post that I had one final trip to my good neurologist, and I can’t wait to bring this up incase he wants to order more tests to see if there’s anything that can be done. I’m so glad that I didn’t–for a multitude of reasons–get the spinal tap he wanted me to have back then: Goodness knows the problems that would have caused, if my pressure was already low!

Always learning, always learning.

a rainbow at night

[Edit, January 2012: Bittersweet, but it was apparently just the Topamax! I haven’t had one of these episodes since stopping it.]


4 thoughts on “Intracranial Hypotension/Hypovolemia Caused by Topamax

  1. Thanks for the info! I actually have intracranial hypertension, which is causing me to have problems with my eyesight. I just started topamax, and like you, I am also medication sensitive. The side effects of this drug are absolutely miserable, and if I was taking it for an anticonvulsant (which I take trileptal for anyway and that works), or for migraines or anything that wasn’t threatening to my actual permanent eyesight or to my LIFE, then I would just completely stop taking this stuff. It wouldn’t be worth “alleviating” symptoms of anything as it causes more problems than it solves!

    Anyway, the BIGGEST complaint with taking it is the nausea, and the headache after taking it. I was kinda wondering and I have a theory that maybe the ICP (intracranial pressure not insane clown posse 😁😂😂 as I’m sure u already know) drops too low in the hours right after I take it. It just “feels” like it. Just as I could feel a buildup of pressure, and had a painful “fullness” headache after each grand mal I’ve had, I now have a feeling of dropped pressure or an “emptiness” headachy feeling in the first few hours after taking it. I decided I’d ask the doc about cutting the 25 mg dosage in half, and taking the half pills instead. Still got that feeling, and for now down to one of my half pills once a day. Ideally, I can move up from here and slowly but surely make my way up in dosage to permanently affect the overproduction of my spinal and cerebral fluid, but for now I still need to function for my kids! I do feel that the drop in ICP is too great closer to the time of taking the med. I do feel that this is the issue. And I want to thank you for sharing your insight. Sounds familiar! I don’t exactly want to go from chronic intracranial hyPERtension to intracranial hyPOtension as neither one will help my headaches, seizures, or life in general. Going to bring this up to the Neurologist next time. But in the meantime, your post helped confirmed my thoughts. Especially as I’m having trouble finding info about how other medication sensitive people are affected by topamax, and how they handled the titrating and upping of the dosage. I wonder if I can ever make it to a whole 100mg? At this point, feels like it would either bring me to the world of the dead, or the world of the undead!

    Liked by 1 person

    1. Thank you for this comment! Instead of having a “missing” feeling in my skull, lately I’ve had so much pressure in my skull and eyes. I’m about to get tested for intracranial hyPERtension, now, because my neurologist (new one, this post here is years old) says my optic nerves have paled. Now it feels like the complete opposite of what I wrote after taking Topamax–exactly like how you described, how with the Topamax you got an “emptiness” headache when you usually have a painful fullness that threatens your eyesight? Now that’s me, with the fullness and eye problems. What is going on here, eh? The other most prominent symptoms are tinnitus and dizziness. My new neuro also seemed interested that the Topamax had once lowered my pressure too much, but I don’t know why, yet. Did you ever find a solution to your conundrum?


  2. After hours of searching I was telieved to find this post.
    My daughter was prescribed topamax which did help her migraines but brought on late day headaches which are only alleviated by laying flat on her back. She now has to lay flat almost all day or she has neck and shoulder blade pain and nausea as well. she is also suffering from tinnitus. She says it feels as though her brain is pressing against the base of her skull.

    Searching “positional headaches”
    I discovered that topamax does in fact reduce ICP which can cause this.

    She’s scheduled for a lumbar puncture today to see if a recent whiplash injury is actually causing a CFS leak. I’d hate to have her go through that if, in fact, the reduced ICP headache was due solely to the topamax.

    She discontinued the topamax about 2 days ago. Calm enough still be in their system to continue these positional headaches? How long do you think she should wait before she sees if the Topamax was definitely the culprit?

    You seem very knowledgeable on the subject. I would appreciate any input you have and of course any advice. We are pretty desperate right now.

    Liked by 1 person

  3. I don’t remember how long it took me to notice results, but I never ever stopped it abruptly, which is dangerous to do, so please consult your doctor or do a weaning off protocol at the very least. Stopping it abruptly can cause the opposite problem and induce seizures! If she can reschedule the lumbar until she has weaned off the Topamax, that sounds like a safe option, IF she’s not having any dangerous symptoms–please don’t consider this medical advice, as I only know 1/100th of her story!


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