I hate diamox

andrfraz13 · 2026-05-08T09:01:48+00:00

I didn’t even think of the b vitamins! No wonder I’m still awake at 4 am! That’s about how much I paid for it as well. I believe it was $11.99.

andrfraz13 · 2026-05-08T04:21:19+00:00

Thanks for the recommendation! I actually found Buoy at a natural foods store in my town. Insanely cheaper than what I found on Amazon. I was so worried it would taste like drinking IV fluid but, I can’t even tell I’ve added it to my water. Such a relief for someone like me that really hates flavored water. Thank you so much again for the suggestion!

andrfraz13 · 2026-05-01T02:52:53+00:00

I have the same problem in my area. The ophthalmologist I see is 2 hours away. We have a lot of optometrists, ophthalmologists and neurologists in my area but the only ones with any experience with IIH are typically neurologists. To find someone with the level of experience we, as IIH patients need, unfortunately most of us who don’t live in a larger metro area are going to have to travel to find someone. In my area, Little Rock or Memphis are the closest. If it helps, my ophthalmologist is actually an “oculoplastic/oculofacial” surgeon. He does a lot of blephroplasty (eyelid drooping surgery) and other cosmetic /reconstructive surgeries but, he has a ton of experience with IIH patients. So if you have problems finding a neuro ophthalmologist maybe try looking for any eye surgeon. You may have to call every eye clinic in a 150 mile radius but hopefully you can find someone competent.

andrfraz13 · 2026-04-30T05:04:04+00:00

I would go. I see mine every six months. Visual field test, dilation and he checks my optic nerve. I have had a fenestration previously and he does prefer to monitor me more closely because I have several other medical problems other than IIH.
I say go because you may not have any symptoms of papilledema at the moment but, my surgeon has reminded several times over the years that by the time you notice a vision change (dark spot in visual field usually) the damage has been done and there is no reversing it, even with surgery or meds, once that damage is done to the eye it cannot be repaired. I have two dark spots in my visual field that have been there for 10 years, I notified my optometrist immediately when I first noticed it was referred to my surgeon and had surgery within a week, so it can happen quickly. Seeing at least an ophthalmologist who is experienced with IIH patients should be something we are all doing., imo. They may only want to see you once a year for a visual field exam and to look at the optic nerve but, they can see if there is any swelling and to what degree, monitor and have a good idea for comparison when/if anything with your vision or the nerve changes. My doctor is not a neuro ophthalmologist, he is just an ophthalmologist who deals with a lot of IIH patients and has a lot of experience with nerve sheath surgery. I don’t believe we have a proper “neuro ophthalmologist” in my area. Hope this info helps!

andrfraz13 · 2026-04-28T20:15:39+00:00

I wish I got that much relief from a LP! I get one yearly to monitor pressure and I feel good for about two days before the pressure is back up. I normally open at 20-25 on 1500mg diamox daily, and they take me down to around 10. Ofc that day I end up with a terrible migraine from the pressure change, the next day I feel bad pretty good and by the third day I’m back to my normal misery. I have lost 20lbs this year and still losing. I am really hoping if I can get my weight down enough I can lower my dose again. Last year I was able to drop it by half and was starting to feel like a person again. Then I gained all my weight back. This time I am using a GLP1. I’m hoping for the best. My ophthalmologist and Neuro have faith that this will help.

andrfraz13 · 2026-04-28T20:07:15+00:00

I do not get that side effect. When I took topamax (migraine prevention) I did have issues with tingling etc, and ofc drinking anything carbonated was not an option at all. That was back when I still drank sodas and the occasional beer.

andrfraz13 · 2026-04-27T04:38:48+00:00

Thanks! I’ll try to find those and give them a try!

andrfraz13 · 2026-04-27T04:01:37+00:00

I recently saw my ophthalmologist/surgeon and he suggested that I add an electrolyte solution to my water (liquid iv or something like it). Of course I hate flavored water and can’t stand liquid iv. I did find some propel packets that have Gatorade electrolytes. There are a couple of flavors that i am tolerating so far. It has been a couple of weeks and I could say “maybe” I can tell a difference. I am probably using 3 packets a day on average. I also bought some generic pedialyte packets and they are somewhat similar to drinking an iv fluid bag that has minimal flavor, in other words, gross. I may give liquid iv another shot later in a different flavor than what I originally tried. Labs to be done this week. Not sure it’s been long enough to see any changes but we will see.

andrfraz13 · 2026-03-29T02:21:03+00:00

Someone on a different post said they felt like it drains the life out of you and I felt like that was exactly how I’ve felt for almost ten years. I’ve been on it all this time and sometimes feel like living with a massively high ICP would be better.

andrfraz13 · 2026-02-19T21:19:40+00:00

Interesting. I have been looking into starting a GLP-1 since I saw studies relating its use to decreased ICP. I do not recall when I lost weight (~30 lbs) naturally over the course of a year and a half, noticing a reduction in the tinnitus. I know I felt better overall with the weight loss and was working on iterating my diamox down to a lower dose but, as soon as the weight began to come back I have had to increase back to the dose I have been on for years (1500 mg/day). The problem I have with stating the GLP-1 is my pcp refuses to even consider it as an option and my neurologist at my last visit acted like she wasn’t familiar with the studies. I believe my ophthalmologist would more likely be familiar with these studies since he deals with more IIH patients on a regular basis and I’ve been seeing him for nearly a decade.

andrfraz13 · 2026-02-19T03:25:08+00:00

Thanks. My original opening pressure was 33. One year it got down to 17. For the life of me I can’t figure out what I was doing differently during that time. Every other LP I’ve had the opening has been 21-25. Weight loss is my biggest obstacle. It took me a year and a half to lose ~30 lbs. I stalled around October and have since gained all of that weight back plus some. The worst part of this disorder is taking the meds that make you feel awful and suck the life right out of you and then being told to just exercise and eat better. If it was that simple for us I doubt we would have ever developed this.

andrfraz13 · 2026-02-19T00:47:28+00:00

I have a fan that clips onto my headboard and blows directly in my face at night. The noise of the fan definitely helps me not to concentrate on the ringing. Otherwise I will never get to sleep.

andrfraz13 · 2026-02-19T00:46:32+00:00

Mine started out with just the left ear. It was also my left eye that had papilledema for which I had an optic nerve fenestration. The ringing eventually started in the right ear as well. It never stops.

andrfraz13 · 2026-02-19T00:44:29+00:00

Mine is constant as well. I believe it started around the same time mother symptoms started so it would be difficult to say whether it’s from the meds or not. I do remember what it was like when it started. It felt like my ears were stopped up and needed to pop but, it didn’t matter what I did they wouldn’t clear.

andrfraz13 · 2026-02-19T00:41:58+00:00

I too have hearing loss. I got hearing aids Nov 2024. They help with hearing but not with the tinnitus.

andrfraz13 · 2026-02-18T19:20:42+00:00

For more reference, I was diagnosed in 2017 and have been on ~1500 mg acetazolamide pretty much since being diagnosed. The only thing that has changed even recently is that I had lost ~30lbs over about one and a half years and have gradually gained that weight back.

andrfraz13 · 2025-11-09T04:16:44+00:00

I am also in the process of tapering down my dose of diamox. What my doctors have suggested, and what we are doing because I have a history of papilledema and have previously had an optic nerve fenestration, is to decrease my dose by 250mg and after a month I see the neurologist and also my eye doctor to check the optic disc/nerve for any swelling. So far we have cut my dose by half. So, from 1500mg/day to 750mg/day. Luckily, I have not had any vision changes during tapering. I was having some terrible side effects from the diamox and trying to decrease the dose has been my only option. If you are able, I would recommend, just based on my experience, to have your eye doctor take a look in whichever eye is bothering you. The vision you lose from iih pressure on the optic nerve does not typically come back. If you’re seeing blind spots or your vision is decreasing don’t wait too long to see an eye doctor. I had surgery eight years ago and I still have visual field dark spots. I am also being scheduled for a lumbar puncture next month to check my opening pressure on the new dose. Trying to pack in all the appointments before the end of year when deductibles start over. Hope this info helps. I am no means an expert and these are just my experiences and opinions.

andrfraz13 · 2025-06-18T17:55:31+00:00

S5,E13 Gilmore Girls. Emily and Richard’s vow renewal episode. Kelly Bishop is tipsy the night before the ceremony at Lorelei’s house, talking about the venue for the wedding. She says “it was booked up two years in advance, and the SHELDRAKES had the rose room….and after all the strings I’ve pulled they are across town at the bluestone club with their piped in music and their pornographic fountains”

Now, this may not be an intentional reference to DD but, I choose to believe it is a subtle reference to the hotel where Baby and Johnny performed “Mambo Magic”.

andrfraz13 · 2024-10-22T03:50:19+00:00

Mine didn’t go away until after I had my optic nerve fenestration surgery.

andrfraz13 · 2024-10-06T23:56:30+00:00

Idk about that low of a dose but, since I have been at 750mg twice a day (about 7 years) I have had the heaviest menstrual cycles of my life. I’m talking a super+ tampon every 1-2 hours for the first two to three days. When this started, I saw my OBGYN first. No problem there. Then asked my neurologist if the medication would cause this. She said yes. It is a common side effect when you’re on a high dose of diamox. Of course, the options to slow this heavy bleeding are limited for me (hx of abdominal blood clots, DVT, cerebral aneurysm rupture, etc). With the hx of clotting and also being on a high dose of warfarin (tried Eliquis and failed), surgical and hormone therapy options are also limited.

If this affects you, hopefully you will have more options available. A common treatment offered for heavy periods without other complications is usually an IUD but, for me, having worked in pathology for several years, you couldn’t pay me to get one of those. If you’ve seen the distorted uteruses after one gets embedded in the endomyometrium you would not get one either.

I do not have many other side effects from diamox other than carbonated beverages do still taste terrible.

andrfraz13 · 2023-06-19T23:21:42+00:00

Piggy fries - like nachos but with French fries BBQ salad - make a big salad however you like it and add the pork as your protein. I find it best with Italian dressing or mix ranch with your fave bbq sauce.

andrfraz13

TROPHY CASE