Mark,

My doctor has me decreasing my dose of diamox from 3000mg/day to 2000 mg/day. The reason was that I was so tired and my blod gasses were so screwed up. Not long ago I had switched from ER capsules to regular-release tabs.

After the switch to tabs my headaches increased by about 20%. I waited awile hoping it would get better, but it didn't. I'm still reducing my diamox dosage because I'm reducing it slowly. It is now at 2500mg/day. My headaches are up again, and some of the old high pressure symptoms that had gone away are back. On the positive siide, I'm a lot more hydrated and I'm not craving salt as much as I was before. So for me, it wasn't causing more headaches than it was helping.

In the package insert for diamox it lists headaches as a possible side effect, so it makes perfect sense it did that to you. Have you tried one of the other alternatives, like lasix or topamax?

Oh! Package inserts can be found at the. NIH site www.dailymed.gov

Hey Bolan,

I do not have an answer for you, but I do have question...I think I mentioned that I used to come to this site often and then a lot of life happened and about 5 years later here I am. As far as I know, I am the only one from my old "crowd" here, so I notice lots of changes.

One thing I am really noticing is these SUPER high doses of Diamox.
When I was here a few years back, and we had an active board just like this one, most people were on 500mg per day...a few folks 750 mg, and extremely rarely 1000mg at most and that was a gradual increase if all the lower doses did not work well enough.

So, while Diamox was still a harsh med even at those doses, we did not experience the severity of the symptoms you did, yet we did get the benefit of reduced fluid and less pappiledema.

Any idea or new research as to why these high doses are better than lower doses?

Just curious, LuLu

My understanding is that csf reduction scales with dose. I read that the dose needed to effectively cut csf production in half was a minimum of 2 grams per day. That said, there has to be some correlation with weight and dose, but i have not seen any studies on it. I think so much of this is experimental that noone really knows and docs tend to go with whatever anecdotalnevidence they last heard. Like seasprite, i just got so fatigued that i dont think there is any way i can go back on the dose of diamox i was taking. I still have the iih symptoms, but the eye thing is much better. I knew diamox could cause headaches and fatigue (among a thousand other things) but i did not even consider that a lot of my eye stiffness and soreness was due to diamox. The bottom line is that i think we are stuck being guinea pigs until some real research is done on diamox, the true mechanisms behind iih, and how csf outflow is impeded. I would love to hear more stories from people and how changes in diamox affected their overall symptoms.

Hey Bolan,

I get what you are saying...I just don't understand why Docs Are RXing very high doses when smaller doses cause the same side effects and having the same results.

I felt awful on 500mg a day...I can't imagine living on 3000 mg/day- seems intolerable..

On 500 mg, fluid was draining just fine...I drank lots of water, got enough potassium, and my eye pressure reduced.

Has any of your Docs told you how much potassium you should be getting per day on the high doses? Typically with Diamox 1 glass of OJ, or a Banana will do the trick, but that was the standard for the lower dose- You all on these high doses need more potassium b/c Diamox is draining it right out of you.

Geesh, I feel bad for all of you in such high doses...I am wondering what the new theory behind high dose therapy is...

I agree with you. I really hope the nordic study comes to some conclusions about the efficacy of diamox in the treatment of iih. I dont think i can bring myself to go back on the diamox now that i know how much worse my symptoms got while i was on it. I am concentrating on diet and exercise now.
I will say that i drank oj and ate at least a banana a day while on diamox. My blood work always indicated my electrolytes were ok. I really wonder if the diamox causes some long term problems. I have this bad feeling that being on levaquin started me on a course where i will be destined to have to take hardcore drugs to offset the effects of other hardcore drugs ... Just another reason i have tried to get off of everything and see if diet will work. Right now i am only on the micardis and taking supplements.

How ironic this came up today, I went to the eye dr yesterday and learned a new "side effect" of our wonderful drug Diamox (sorry it's been kinda rough). Background story, in April I was taking 3,000 mg of Diamox - I am now down to 1,000 mg. All done under dr orders, but according to the eye dr, the "coming down" from the high dose to the lower in a relatively short time combined with continued high pressure, or at least pressure that fluctuates, has caused my eyes to get Worse! Still no paps, but to the point of acute vision loss that I may not get back. So be careful and check your eyes!

Kristena

That is very good advice. When u say vision loss, is it your fields or acuity that got worse? I ask because i continue to have blurry vision in my right eye which is more obvious since i have been off diamox. On diamox everything was more blurry in both eyes.

Also, from what i have read, glaucoma is very much related to icp. In fact, the theories i have seen indicate it is the pressure gradient from iop to icp that may result in vision loss. That would explain why coming down off diamox affected your vision. My iop is borderline high around 20/21. I also do not have paps. But i wonder if i had high iop before i got iih. And what the iop would do if my icp came down or if i would have vision problems due to high iop/ low icp.

I wasnt real clear explaining the glaucoma theory. The thing is glaucoma appears to be caused by high iop and low icp. As people age, icp tends to go down, thus a higher chance for glaucoma, depending on your iop.
For those of us with high icp, the reverse issue is in order, and we shouldnt be subject to glaucoma. However as icp comes down, iop comes into play and as icp increases, the pressure gradient causes damage to the optic nerve.

This is why i think those of us with high iop dont have paps. But i havent seen research indicating that. Just my theory

Both have gotten worse - and that's been within a month for visual field testing. And in that month I've had an lp, blood patch, and a reduction in Diamox. I do not know specifically about the iop changes in the month but 2 weeks ago the lp opening pressure was 24, yesterday the iop pressure was 17 (on the right eye) and 16 (on the left). According to my Optho not high, just not exactly low either...now admittedly I know nothing about iop's and have done NO research so I am relying totally and completely on his knowledge...

Kristena

I am getting a little lost, because as I said, back in the day (I'm so old) the average dose around here was 500 mg and it was effective.

Hardly anyone I knew made it past 750 mg, and only one or 2 people I remember being at 1000mg and they were practically disabled by what we then called "the Devil's Drug"

Topamax, affectionately known as "Dopamax" is really not a drug that is strong enough to treat PTC on its own, but a drug used to treat headaches and sometimes aid in weight loss and was and RX'd to practically every one on Diamox.

I was on 500mg of Daimox for about 10 years. When I had trouble balancing my electrolytes, my Doc switched me to Lasix plus a Potassium supplement, and Lasix worked just fine. In fact, I found it much less harsh on my stomach.

As far as I know regarding eye pressure, any thing over 20 was something to be concerned about, so Kristena, your 17 and 16 is pretty good....Ideally Docs like to see 12-15 if possible, but they won't achieve this simply by raising your dose of Diamox.

There is such a thing as a Therapeutic High. Docs raise your dose and measure the effects and stop raising the dose when no more improvement is noticed...I'm wondering how much more improvement folks on 3000 mg are getting over folks on 500mg?

People on both doses are still needing shunts, or Decompression Surgeries, Taps work for some and not others...I would love a neuro optho to explain.

If you are feeling really lousy on Diamox I'd push for Lasix. It is much gentler, and it had the same effect as Diamox. Your Optho will tell you it is not the same, and you will never get an Optho to switch you over, but a Neuro or Neuro-optho will switch you over in a heartbeat,,,don't know why, but Opthos just don't RX lasix.

LuLu,

I honestly know very little about lower than 1,000 mg of Diamox. Truthfully, I was diagnosed in an ER via an LP, and told to follow up with my PCP. I ended up with a leak and needing a blood patch that I got six days later - due to being denied at the original hospital, then admitted to a different hospital by my PCP on a Friday afternoon. The neurologist finally came in the Monday evening to do a consult and recommended I start Diamox 250 mg twice a day as well as get a blood patch to fix the leak. That was October 7th (?) by October 29th I was back in the hospital with a massive headache, being told I had an aneurism and small ventricles they needed to do surgery on here in our small town hospital. I freaked out and said no way it's time to move me out of this hospital before doing brain surgery. They moved me to a bigger city, did an lp and my pressure was higher than ever. To cut this long story short for the most part my Diamox dosage has only went up until April. Topamax has been added an taken away at different dosages, as has lasix. I don't know if that helps at all and I definitely don't know about any research to back it all up (unfortunately) but that's been my lovely road with the devil and his sidekick aka Diamox and topamax.

Kristena

hmmm. my IOP has always been normal. I don't have pap. but I have proptosis. ostensibly not caused by my ICP but I am convinced otherwise.
my son's IOP was about 20 but they said it was because he was fighting and crying when they did it. he hasn't had pap either. no proptosis yet.
we both have ICPs about 230.

Hello all my fellow Diamoxians,

I am so beyond frustrated w/this stuff & am so ready to just flush them down the toilet, but I know I can't, I have tried to reduce my dose but have only managed to get down to 1000mg, any lower & my pressure goes up, I can feel it & I become miserable, more miserable than I already am...;(
I read about everyone increasing their doses gradually & it makes me wonder why my Neuro just slapped me w/1500mg in the beginning, I was so beyond miserable but I was desperate & willing to try anything...ha...after about a year of just dealing w/all the horrid side effects I lost 122lbs & he lowered my dose to 1000mg & although I could see better, my ICP was still 330 & 6 months after having the most painful LP you could imagine, they did another tap only this time my ICP was 280 & they added radioactive dye to determine that my shunt was not working, generally they don't last 20 yrs.
Anyway, I am dealing w/a lot of issues caused by the Diamox, including anxiety & depression & now I can't seem to get the pain, numbness & burning to go away in my hands & feet & I now I have this achy feeling all over my entire body, I swear I'm going to lose my mind now too!
I want so badly to be off Diamox & wish someone somewhere had another answer other than take more Diamox & lose as much weight as possible, I'm so sick of hearing that even though I'm only 10lbs over wt, they still insist I lose more.

hi Turtle;
if 1975 is your birth year you are at the age to enter perimenopause and this is when sleep apnea gets worse. sleep apnea can cause anxiety and depression as well as IIH. treating it might be the adjunct you are looking for. losing weight until I was a stick did nothing for my IIH, and it may not for you. however I do know of people who seemed to get better after losing just a little more weight even after losing a huge amount and thinking that it had to be enough. and others who have improvement losing so much that they are underweight.

Somebody asked about high dosage and if the dr. titrated up. Mine did. I had instructions that said to start at 500mg and add 250mg/day until I had sufficient symptom relief, but stop increasing before the max of 4000 mg/day of Diamox. I went to 3000mg/day, gradually. The headaches and everything else got gradually better and they were at a tolerable level at 3000mg.

Then the Diamox started making me sick in ways that weren't acceptable to my doctors. So they have me backing down to 2000mg/day. I'm currently at 2500. My headaches are worse again, as is the amount I'm sleeping, mood swings, joint pain, blurry and greyed out vision, digestive system problems, etc. etc. etc. Things I thought would get better with a diamox decrease are getting worse and that's a surprise.

Something that's getting better - I don't have to drink as much water and eat as much salt all the time!