Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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hopeful25 06/25/2016

I saw my neurologist on Friday. He checked my eyes, then had me rattle off my symptoms. I let him know that I think the diamox is starting to give me headaches (on 500mg sequels qd) and that they resemble the headache I have after a lp; meaning that they feel like they may be low pressure headaches. I also mentioned that these headaches are happening most often after I've been stuck at my desk staring at a computer for 9 hours, are associated with neck pain, occur after I've picked my son up -or anything heavy for that matter, and when I'm stressed out.
He stopped my diamox. He switched me to topamax. He said that IIH is no longer my issue and that these are tension headaches now.
What happens if this isn't the case?
My pressure shoots back up and I spend the next year trying to get it back under control.
I don't know how confident I am that this is, in fact, the case. That the IIH is a non-issue. I mean, is it ever really gone?

Sophiasmom06 06/26/2016

I'm skeptical. he doesn't know without doing an LP. at least the Topamax should treat the IIH too. it isn't a treatment for tension headaches. and the fact that lifting heavy objects triggers the headaches suggests you still have a Valsalva trigger which is what IIH headaches do. either your neurologist isn't a good communicator, or you need a new one, or both. I hope you are tolerating the Topamax and that it helps you.
supposedly IIH can go away, and the neurologists seem to count on this as a matter of course, but I suspect it is unusual. I've had remissions but only after surgeries which allowed decreased resistance in my jugular veins. after jaw surgery I don't have valsalva triggers anymore, mainly just chemical exposure triggers and the symptoms are much milder.

hopeful25 06/26/2016

I think that the topamax is going to be a problem. I was doing very well on the diamox and I was okay with that. A headache here and there is bound to happen. I believe that my symptoms are so minor because the diamox was doing its job, and I fee like calling the IIH a "non-issue" is a bad call.
I've been off the diamox 3 days now and haven't started the topamax yet. I'm in the honeymoon phase where my pressure isn't high enough YET to cause any issue, but in a couple days I'll be in pain and desperate enough to try the topamax.
You said that the topamax isn't for tension headaches, I didn't think so either. What are the usual uses?

Sophiasmom06 06/26/2016

Topamax is used for IIH, and for migraine. what I think is that it works for cases of "migraine" that are really IIH misdiagnosed. I think lots of people have IIHWOP (without papilledema) and neurologists don't get an LP and call it migraine. I know several people who have responded to Topamax in that situation when they have some obvious signs of IIH, given what triggers them.

hopeful25 06/26/2016

At the points in my life that I've been the heaviest, I've experienced bouts of migraine with aura. They've been as common as every other day, and as far apart as almost a year. The time they have been a year apart has been since I started the diamox, that's why I'm such a fan of that medicine. Not one migraine. That was the other point that the neurologist and I bumped heads about. I mentioned that I thought my migraines were a product of the IIH. He didn't seem so sure.
So if the topamax is for migraines and IIH I may be okay, the may not start coming back?

Sophiasmom06 06/26/2016

yeah the Topamax may work fine for you. but ultimately you should find a neurologist who knows something. like that the only way to properly diagnose migraine and rule out IIH is to do an LP. he is being unscientific. ask him about IIHWOP. does he think that because your eyes are OK that the IIH is gone? IIH is my family mystery illness that spans generations. and not one of us ever had papilledema.

catlover2011 07/08/2016

Hello im not sure if u have looked for other drs yet,but im with my third neurologist and my second neurosurgeon my second neurosurgein has been the most helpful his name is dr janjua at novant health or forthysite medical center in north carolinia if u google him he will have an articial about psedutumor cerbi and he is amazing ice struggled with all my iih problems and then had a brain bleed as well.He was the only one that didnt give up on me or send me to other drs to deal with.I am now recovering from my vp shunt still but it looks promiseing that he put me in i guess u would say remission.But if ur close to NC it cant hurt to see his point of view ans he doesnt want to do surgery right off the bat but he will try his damnes to help you .

catlover2011 07/08/2016

Oh forgot to mention that i worked on computers for a living when i got diagnosed with iih.I dont know u but it could be low pressure,or it couls be high pressure headaches and i have a feeling urs isnt low.After or during my shift i had to leave a lot due to my head and finally i went to my dr told them i need a lp done so i scheduled it on a day when my head hurts so bad mid shift or even early shift and we found out my pressures were way higher at different points of the day i would talk to ur neurologist about maybe doing that and be careful on topamax in virginia all the drs call it stupid max because it can hurt ur memory so keep a watch for side effects.Hope you have a great night!

hopeful25 07/09/2016

Hi! I stated the dopeamax about 10 days ago. First 5 days at 25mg, the last few at 50mg. Oh my goodness.
I. Can't. Remember. A. Thing.
Do you know the picture you see when there's a person standing in the middle of a busy city streets at night, and all you can see around them are streaming lights, like cars flying past?
I feel like that person in the road. All day long. Just lost.
I was fine at 25mg, but now at 50mg I'm having a huge problem. I saw neuro again today. He told me to say words that started with 'd'. 4-I came up with 4 words. I speak 2 languages, and 4 words were all I could come up with. He put me back to 25mg.

I haven't had a headache tho:)

So the real debate here I guess is chronic pain vs no memory!

Hope you have a great night too:) :)

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