23 is IIH. Find a new doc.

LOL & love your ideas - yes, I am finding new doc. But regardless of this whacko, isn't it possible to have concurrent migraines? Am just "building my case" so to speak. If I go to new doc with these DX and can say, "of course infusions didn't work because....", it'll help me. That's all. You're the best.

Also... this is my question about OP that no one seems to be able to answer... on diamox 2g/day --an OP of 23 --even if it were "normal" or "equivocal" as some studies say -- your being treated with a CSF lowering med to make it that way!!

And I get migraines too since I started with this pressure headache 7months ago now.

Hope you feel better soon and the new doc is most helpful. I'm curious though, is your headache constant (maybe an epicenter) that can be worse at times like a migraine piggybacking the other? Also, is your headache worse lying down?

OK, HOW DO THEY KNOW THAT A MIGRAINE IS A MIGRAINE? how do they know that what they have been clinically thinking of as migraine, from watching patient's symptoms, is not headaches caused by spikes of ICP? maybe in some people they go back to baseline in between, so you would get a "normal" ICP if you did a tap when the patient doesn't have a headache. and WTH is "normal" anyway? a spinal tap gives you a moment in time. and I was diagnosed at 23! my son was diagnosed at 23! they brought his ICP down to 14 and he felt fantastic and acted way less autistic! in us it had less to do with pain as with other symptoms. and since my ICP is 14, I rarely get headaches. when I do, it's obvious I got exposed to something that raised my ICP. the same triggers that raise my ICP, used to cause my "migraines". now I don't think I ever had migraines. I think that once a person has IIH, it is negligent to assume that their headaches on treatment are migraine. I think that headaches on treatment means that the treatment is not adequate, and this should be the first assumption. next time you have a raging headache, go in and have a tap and have them drop your ICP to 14, then see how you feel. that is the test.

meaning, do they have a test to determine at any given time, that a particular headache is a migraine? can they do a blood test or a CT scan or put a probe on your head and say THIS headache is a migraine? NO. it's a clinical diagnosis. now, if in IIH you have a headache, is there a test? YES. an LP. so why are they making this clinical diagnosis that has no test, in a situation where someone has already had a diagnosis made based on a TEST?

Sophiasmom06 my doctor said she doesn't treat until the ICP is over 30 but because my husband was there saying hey she gets really bad and doesn't function well, she said she would treat me with Diamox. I am still nervous because the headaches are on and off and the eye has not stopped. I will be glad to see if the weight loss helps....9 lbs as of today with another 61 to go....

I have had this all out. its in a past post somewhere.

my neuro diagnosed me with migraines and IIH, as my head pain was often one sided - which it is for many IIHers. but i tried to tell him it was the same type pain i felt when the pressure was at 38 as i now felt when the pressure was at down at 24 (crushing temple vice, stabbing top of head, around the eyes and sinuses etc) just a little less intense. but he wouldnt believe me, told me i wouldnt know what a migraine felt like to tell it apart from an IIH headache - well i am not sure what a migraine feels like, but i know what the IIH headache feels like, and i know they are IIH headaches because I have had them before and they respond to diamox and lumber punctures. but he told me that at 24 my iih was under control. i spent months messing about with gabapentin, pregabalin and sumatripan (migraine medication) and imigran injection pens to treat these migraines - non of it worked - BECAUSE IT WASNT MIGRAINES!!!

in tears i finally insisted that the family doctor increase my diamox even if the neuro said not too - the doc told me it was all on m own head (treated me like i was crazy) but thankfully did it and in 4 days my "migraines" were gone (7 weeks ago and counting). The neuro ended up doing some fast back peddling, ratifying my current dosage and promising to do an emergency LP if i had any more headaches. (lol as close to admitting they are wrong as these hypocrites come)

Dont let them fob you off - and dont spend months in pain messing about with migraine medications that you know wont work - i remember the despair i felt as i accepted another prescription from the doc that i knew would also be useless cause i knew the problem was pressure. GET THE PRESSURE SORTED. believe me, when my head cleared in 4 days i wished i had made a fuss sooner!

ps my neuro was one of those rubbish ones who said that he would not treat with medication unless ou ere over 30. 25 was the bench mark and it wasnt till 30 you got medication. and he told the gp 1g diamox was the max does. lol there is no industry standard :(

thank god my GP - family doc could be convinced to write me a prescription go my own way - but took a lot of crying at them lol

lol rubbish typing today

Taleema: I agree with you that an OP taken while on Diamox is not a true read of pressure. It is a read of the difference between pressure before and during Diamox, ergo more of a measure of Diamox's "effectiveness" than not. In my case, 2000mg/day of Diamox served only to drop my pressure by 2.5 cmH20. re Migraines: how do you know the difference between your pressure HAs and your migraines?

AntiqueRose: Thank you. Yes, my headache is constant; only the intensity fluctuates (between 6 and 10 always). I wouldn't know if I had a migraine, having never been subject to one before my pressure issues started and having no family members who are migraineurs. I've got no baseline from which to determine a difference. And yes, I cannot lay flat because HAs spike so dramatically. Must lay at 45-degree angle. Laying flat, exertion, vomiting all spike my HA to a level 9 or 10 (paralyzing).

SophiasMom: Just as a question, doesn't Biofeedback actually mark migraine response? Again, just wondering. BUT....

Nearly everything I've read about chronic HA syndromes, including IIH, mentions that there's a question or supposition about concurrency of migraines/chronic daily HA/new persistent daily headache/cervicogenic, etc. with IIH headaches. I've found nothing that truly isolates one from the others. That's why I asked about infusion treatment & their effectiveness.

The article you referenced a bit ago about CFS & IIH (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/) absolutely confirms your point about an LP being the sole diagnostic to make such differentiation. I wish there was a place here to go for a diagnostic or emergency LP when my HA spikes -- that'd make it easy. Not possible for me because I was a "leaker" for several years and no one will touch me without an order from Neuro.

However, I think there are migraneurs who also suffer pressure HAs and I wonder what SX differences they notice?

If I'm subject to badly crafted DX (supposedly of exclusion, but in no way exclusive re the treatment I've received), it helps to know what others have encountered so I can run interference quickly.

I.e., based on my DX & treatment, a new neuro may decide to throw me into the migraine hopper and delay real treatment for several months while dosing a nortriptylene, etc. I can say "no, it's IIH not migraines", but it'll help the argument to be able to readily define differences early on.

Keren C: EXACTLY!!!!! Rubbish indeed. Sounds like our docs have been separated at birth. OK, so if new neuro starts in on the migraines, move along then, right?

Can I quote you on the "fob you off"? :)

lol - fob you off is a great saying - but true!! they do!!

i felt that i had to exhaust their stupid list of everything else to try - all the regular pain killers, nerve blocks, all the migraine meds, changing the topirmiate without changing the diamox, lol none of it helped (i refused the antidepressants) - and when i had excluded all the obvious ones thankfully the General Practitioner reluctantly let me raise the diamox against neuro advice.

you need a good senior doc willing to do that (and they make u accept the consequences of your actions) and you need to be persistent - hopefully you dont have to go through the whole list of other failures first like i did but it probably wont be as a first option. and you have to be really forceful - but if i hadnt been - i would still be wallowing in pain messing about with a wrongful migraine diagnosis.

I dont know if i ever did have migraines - back when my pressure was high i had some mad 9/10, vomit inducing, help i think i need an ambulance, throbbers where i couldnt see. could have been a migraine. but could just have been extreme high pressure. who knows. havent had any more of those headaches since my pressure has come down but then i have also been on topamax since the start which is also a migraine drug so who knows.
either way, my recent headaches were fixed by diamox ergo they were pressure headaches. end of. :)