From what I understand pressure headaches are from fluid build up and until that is under control you will continue to have problems. I hope you find answers. I know the Diamox didn't help me until it was at 1000mg dosage but my Dr was more than willing to go higher as needed. Positive thoughts and prayers headed your way. Aim

Thanks, Aim! Am still confused & dumb right now, tho. So if the pressure isn't controlled, then the nerve sets/endings/roots are always aggravated, thus rendering many TX ineffective?

2000 mg of Diamox is not helping me much at all and the side FX are horrid. I was hoping the nerve blocks would at least temper the HAs to a dull roar.

How are you doing? :)

Hopefully someone will have a good answer for this, I wish I did. For one thing sometimes we just can't trick our nervous systems into thinking things are "okay" without fixing the underlying cause, so then our nerves are busy doing their job of alerting our brains that "something's gone wrong here!" Really our good little nerves are trying to do their job. :) Chronic pain patterns are more complex though and I just don't know enough about what is happening pathophysiologically in some of those cases. For what it's worth, it seems like some of the other headache types - such as migraine - can be quite hard to treat as well for some people.

Sorry you aren't finding more pain relief yet! I hope these headaches will break soon.

Thanks RN! Wish the docs would listen to my "good little nerves" LOL. Hope you're having a good day :)

I am still of the persuasion that nitric oxide dysfunction is the key factor in headaches associated with a variety of disorders. Taming the nitric oxide cycle/dysfunction is certainly attainable though "curing" is still a dream.

Drugs targeting nitric oxide synthase for migraine-treatment:
http://www.ncbi.nlm.nih.gov/pubmed/24818644

Presently, my taming attempts involve regulation of diet and adjustments in life-style, taking lysine, staying away from that which is avoidable when such is known to spike nitric oxide (i.e., certain antibiotics), and more. Not a cure, but such a difference.

Hey PC,

i found a headache break through at about 2g of diamox.
(i was gluten free then and my neuro claims it was the gluten free diet that had led to dramatic weight loss by this point that finally took effect here - my neuro thinks weight loss cures IIH) - however the 2g diamox step up did come with a nasty week of vomiting and diarrhea which did indeed drop several more pounds. i dont know if it was the gluten free, the 2g diamox, the weight loss or a combo of all 3. but things have been slowly improving since then - although not always perfect - gone are the really bad pressure days.

Its crap that there is no set answer for you but you never know when the solution might be just around the corner. stay strong. have you tried a diamox and topamax combo? i dont rate topamax on its own at all, but i wouldnt miss it out of my combo. 100g per day - might help???... but it is slow to get up to dose and kick in... just trying to throw ideas around....

AntiqueRose: Thanks for the info on nitric oxide...from cursory look, interesting! Am glad it's helping you!

Keren: Thanks! I've been on 2g diamox ER for about 10 months now; it was a wicked wicked ramp up, and I still don't tolerate it well. We tried 2500 mg, too, but I couldn't take that in any way. At first, my HAs & eye pain did seem to lessen a bit with the 2g, but now I feel like I did a year ago. Utterly miserable. I'm not entirely gluten-free, but have done best to simplify and eat fresh (also trying to boost potassium, HDL, etc.) I'm still dependent on 75 mg of promethazine to keep vomiting down to 3-4-5 times/day. I need to drop 10-12 lbs to get into ideal zone.

I've asked for a little Topamax, but as I've said neuro has relegated my care to Pain Clinic now and they don't RX meds - just injections. I'm trying to find a "hold-over" neuro while I wait for Hopkins scheduling which now looks like Jan/Feb. because the CSF Disorders Center is so over-booked.

But there is hope and I'm basically doing best to stay strong. Thanks for all encouragement. :)

mate i am feel for you so much. I was in that cycle with the diamox where i felt good after a step up for a while then slowly things went crap again. I know the frustration.

when i went strictly gluten free (i had been non strict before and strict made all the difference), i stopped caffeine too (including chocolate) - and i was basically drinking water only - and upped to 1.5g diamox. to be honest i did loose weight but the main thing was to be gluten free for the sake of the HAs. but i still got bad blood pressure spikes and valsalva and period HA etc, so i upped to 2g diamox with my 100g topamax and havent looked back -but i know you have been up to 2500 so you dont want to go any higher!!!. but i really dont know what did it. is it weight loss or drugs or lifestyle?? its so frustrating.

technically i still need to loose 30lbs - i've lost 60lbs since DX. 24lbs of which was since i was gluten free which is what my nuero thinks did the trick - but how do you prove that conclusively, when you change so much at once... so you only having another 10 lbs to drop doesnt sound like you are in the same category as me who needed to loose so much!! What i would be far more concerned about was vomiting 3 - 5 times a day! that's one way to keep off the pounds but a definite way to be miserable!! and to have to wait until Jan to see John Hopkins!! argggggg!! ARRRGGGGGGGGG!!!
i hope you can find a neuro and try a little topamax, it is slow to kick in, but not wait until CHRISTMAS has come and gone slow!!
also can you maybe try some diet changes with the diamox to ease the nausea? i found i went off dairy for several months because it tasted rancid, might be something is making your nausea worse? dont know mate! just feel so much for you, wish i could help some how!!! sending you lots and lots of good thoughts and big hugs xx

Keren: Thanks for all good info & support - very much appreciated! Yeah, I just can't figure this out and have been whacked with so many injections, but no meds beyond the Diamox/Promethazine that it's just seems impossible to tease out. BUT, you are so good at bringing things back 'round to sensible step-by-step.

I know I need diet modifications; already am 99% dairy-free. So, will try a strict gluten-free and give up my 1 sacred yet small cup of coffee.

The bizarre part of the vomiting is that it seems to have nothing to do with food, etc; the only trigger is when my HAs spike to their highest. So, I'm not losing weight because of vomiting as it's almost like a vagus nerve response to head pressure and the amount of water I've been drinking (60-80 oz./day). Plus, even with the vomiting, I'm now gaining small bits of weight at same time -- how? I'm hating on the Diamox right now, but don't have anything else. Had a husband like that once - LOL!

Have tossed around idea of just abandoning the Diamox (slow titrate down) and seeing what happens for belly problems. Sometimes I think I'd be better off without it. But the thought of waiting until I can square away a new neuro and then wait for Hopkins without taking the Diamox is also frightening from the pressure standpoint.

Going back to way earlier posts, I'm suspect I'm suffering from a bit of neuro community bias right now; i.e. there are docs who just won't see me because of who I have seen. Think no one wants to ruffle feathers so to speak. Certainly adds to the frustration.

Our refrigerator died 10 days ago and we finally got a new one installed yesterday -- this will help with the diet changes as we've been living on hashed together take-out & dry foods and probably about 6000 mg sodium per day. Think that might have anything to do with latest bout of h*ll?

Hope all's well for you - thanks again! And, hey...is Scotland voting Yes? We've got a lot of succession-type rumblings here in the States. All eyes looking east at you! :) PC

Don't give up your single serving of daily coffee! There's got to be some sort of standards for quality of life that shouldn't be violated. ;)

RN: :) I can only hope, you sensible lady, you!

you have to have something to look forward PC :)
we dont know the scale of impact caffeine has, so if you get pleasure from it - have your one cup a day. :) I was still smoking when my HAs improved - i have been able to quit now i've got some breathing space, but there was no way i could have further compounded my misery by quitting when my head was bad so i wasnt being a saint myself and i still managed to see improvements! (not really comparable cigarettes and coffee but it was just an example lol) you have to find what joy you can.

PS dont know where Scotland is going to go - rumors keep shifting, its about 50/50 with about 1% leaning to No to independence at the moment but its anyone's guess which way it will go.

Hi, Pressurecooker,

I'm late coming in on this conversation. I've been through most of it, too. My neurologist didn't want to leave a stone unturned when it could possibly help. None of it helped, and one (botox) actually made things much worse for a month or two.

Now I'm on Diamox which seems to help. 2000mg/day. I was on 3000mg but my body couldn't deal with it.

My guess at why many of these treatments don't work is because of location. IH headaches are caused by pressure INSIDE the skull, pressing directly on the brain and nerves inside the skull. Nerve blocks and botox address nerves that are located mostly OUTSIDE of the skull. The migraine cocktails target the over-firing of synapses that causes migraines. What does that have to do with pain from a brain (a giant bundle of nerves) being constantly squeezed? I think all those treatments can get rid of the other types of headaches that can happen along with an IH headache, but don't do much for IH pain itself.

When my headaches get above a 6 or 7 I reach for hydrocodone, cyclobenzaprine, and ondansetron. They don't lower the pain significantly, but the three together knock me out and I can sleep through the headache for awhile and the nausea stops. That's almost as good.

Keren: LOL; I think I could manage cutting the coffee back to a couple times per week. That's what I did with smoking several years ago. Now, I'm "allowed" 1 cigarette per week -- IF I can find it hidden in the house. Great trick when I can't even see the cat most times :) Thanks for Scotland update -- so very interesting and up for grabs!

Sea: Thanks for sizing this down so nicely! I guess I've always assumed that the only pain the brain itself can feel is if there's meningeal damage, but pressure would be damaging and could cause pain inside. I've had so many neuros talk to me like I'm an idiot that sometimes I find myself wondering what the heck I've missed in all of this! Am jealous you have meds that'll knock you out, but am so sorry for the reason (for all of us really).

So Sea, what's your thinking on why the Botox made it worse? Did you have a reaction to the toxin itself? Good grief ma'am - you've been through so very much.

I've eschewed the Migraine IV cocktails for now even though I'm being pressured to "keep trying". They do help me sleep a bit more, but make me so flippin nauseous that it's not worth it.

Thanks for help everyone!

this is a good question, and Sea has a good answer. I suspect part of it has to do with the implications of what is causing the pain.
for example, if someone had their hands around your throat squeezing, would ibuprofen affect the pain in your neck?
the pain from a tension headache or migraine is just a pain. the pain from ICP is associated with a serious threat to the organism, brain squeezing, which I believe is perceived subconsciously by the organism as a fight or flight type of threat, requiring that type of response. it does other things to us besides just pain, like optic nerve swelling and empty sella; brain badness. I think this is related to why we develop sensory issues; our nervous systems get turned up on high in order to combat the threat. so, you can try to treat the pain, but if you do not treat the brain squeeze, you are not treating the underlying problem. it would be like taking Vicodin for a broken leg, but not splinting it and continuing to walk on it anyway. would that help?