Anyone ever have to deal with side effects of Diamox?

[singingpixie]

I'm on Diamox for Pseudotumor Cerebri (basically, too much fluid surrounding my brain). My neurologist started me on a low dose of diamox, to be increased every three days until I reach my target dose of 2000 mg daily (half in am, half at night). Ever since I got up to 1000 mg daily, the morning dose has been killing me (nighttime isn't bad because I could sleep through the worst of it). I'm nauseous, dizzy, have a headache and just generally feel awful for the first 5 or so hours after I take it. After that I'm still not myself (tired, weak, tingly in feet, hands and face) but I can at least function better.

If I can't tolerate the meds, the other option is surgery, so I really want to figure out a way to tolerate them. Has anyone else been through this? Did it get better once your body adjusted? Did you come up with another dosage schedule that worked better? I'm so used to being a morning person, and this is really getting to me. I'm also finding myself skipping anything that I don't absolutely have to do (like to go work) because I'm just so tired.

Thanks!

 

[mickeyboat]

Is there another drug option the doctor could try that might not have the same side effects?

Hope you are feeling better soon.

 

[singingpixie]

Is there another drug option the doctor could try that might not have the same side effects?

Hope you are feeling better soon.

There looks to be a couple options, but they're all chemically related and they all have similar side effects listed online. I suppose there's a chance that I may react differently to one than the other.... I'm just scared to let on too much to my doctor about how bad this is, because I really don't want surgery. I should only have to be on them for a year or two, but a year or two like this isn't going to be pleasant.

 

[pls5286]

Sent you a pm. We have the same condition.

 

[monkey68]

A friend of mine has the same condition, and I know she tried a bunch of different things, and now, she just gave up on it because she couldn't handle the side effects. She gets her vision checked frequently because they're worried about compression on the optic nerve, or something like that, but otherwise, she just deals with the constant headaches. She also doesn't want surgery. Sorry, not much help, but you aren't alone with the side effects.

 

[arminnie]

Diamox is awful, awful, awful. Honestly the surgery is easier. Putting in a permanent shunt is a piece of cake for a neurosurgeon even if it does sound horrendous to the patient.

The pressure thing is very, very serious. My sister had that and it eroded parts of her brain lining - she's had multiple surgeries for it. She was incredibly lucky not to have had stroke damage.

Be very glad this is not a tumor - but take it very seriously. My sister is great now.

 

[acc82]

I just saw this thread when I was trying to see if there's anybody else out there on these boards with PTC.

Singingpixie: I also have pseudotumor. I've had the diagnoses for about a year now. I take diamox 500mg sequel tablets three times a day (total of 1500mg). that seems to be the magic dose for me. It still makes my hands tingle, but I don't get the dizziness (i actually suffered from dizziness as a symptom of pseudotumor - so, the diamox fixed it.) I wanted to check and make sure you're on the sequels, they may improve the side effects if you're just taking regular diamox.

also, some of the other meds may be better even though a lot work by the same mechanism. i.e. topamax. talk to your neuro!

 

[BlackRose101]

I was diagnosed with pseudotumor cerebri in January 2019. I am currently on a dosage of 2000mg/day of the acetazolamide, taken in 500mg doses 4 times per day.
The side effects are crippling. But my neurologist refuses to even consider the surgery, saying the drugs are working. And i tell her, well, the drugs may be working, but they caused me to get fired, and i have to get off the drugs to survive.
So. I am seeking a 2nd opinion in hopes of speaking to a neurologist that thinks about the patient's quality of life, and not just the fact that they are still breathing.

So keep your chin up! There are others. Lol.