Acetazolamide diamox abit of advise
Posted , 3 users are following.
So its been a while, i had my lumba in august it reduced the pressure in my head & the headaches pretty much stopped & the optic nerve swelling had reduced to nearly gone, i wasn't put on any medication i still have pulsatile tinnitus & the pains have started to creep back in my head & behind my eyes, After a trip to the docs they have decided to put me on 25mg Acetazolamide twice a day, Is it really as bad as all the stories are saying??
0 likes, 7 replies
amanda99839
Posted
250mg not 25mg 😏
Harristm143 amanda99839
Posted
For me, at first the side effects were weird because some things were sudden, like tingling in hands/feet/face (similar to "pins and needles when your foot falls asleep just a little more intense) and flavor changes of some food and drinks even things you thought tasted good before, but after being on the meds for a few months now it doesn't seem as bad/frequent. Now I'm just more dehydrated than anything else... I'm on 1500mg at this point but my opening pressure from my LP was 40 so I had quite a bit to come down from.
amanda99839 Harristm143
Posted
My pressure wasnt as high as some it opened at 29 & they only managed to close it at 20,
So im going to be starting the tablets on monday when i have a couple of days off so i can stay home & see how i feel, did you have to have time off from work?
Harristm143 amanda99839
Posted
Unfortunately for me, with my pressure being so high, my LP kicked me to the curb. I ended up with a debilitating spinal headache and couldn't stand up for seven days... that had nothing to do with the acetazolamide, but because of that my job was understanding enough and gave me a few weeks off work. It seems to take at least a day and a half for me to notice some side effects with this medication though. Each time I'd have the dosage increased the side effects would be a bit more intense for a little while but you should be able to get a pretty good idea from a couple days. Of any of the side effects, causing tiredness is the one that may affect work, but not terribly.
I'm hoping it'll be easier for you to feel side effect initially than it was for me because I already had pretty significant symptoms from my IIH when i finally started getting treated that the side effects from the meds were less of a concern than the pain I was already in accompanied by vision loss.
But stay hopeful. My diagnosis seems to have been far more advanced than the stage where you are currently and this medication has helped me significantly in just about four months. The side effects are more annoying than anything else, but if they help get the pressure down to a normal level for you that quickly hopefully you won't need to be on them for too long.
amanda99839 Harristm143
Posted
Well i have started my medication & so far so good but im hopeful they will work its just the side effects im not looking forward to as i drive as a living but they have been so good to me so far, i struggled with fatigue before hand so if they make you tired aswell iv got no hope, they said they had picked mine up while it was still early days which i was glad of i dont think id of been able to cope if it was more advanced, i was quite worried at first because i was just being told it was headache & tinnitus & pretty much just to get on with it untill o went to the opticians & was referred, thankfully i have a good consultant in the uk, where abouts are you? How long have you had the diagnosis?
Harristm143 amanda99839
Posted
I'm in the US. It's been about 4 months since I finally got a diagnosis but before then I'd been trying to get someone (my general health care doctor) to take me seriously that something was wrong for about a year and a half...I'm sure that's how mine got so bad.
I started off just having headaches and being tired. Then I started getting dizzy from time to time when I'd work out or go up stairs too fast. That's when I really started pushing that something wasn't right but my doctor just kept telling me I was sensitive to over heating and some other "it's in your head" nonsense -.- then I started losing vision in my right eye. Complete lose of sight that would last for around 30 seconds every 5-10 minutes. That's when I finally went to the eye doctor and was put on the fast track to being treated cause at the point I was I could have started to have permanent vision damage if it had gone unaddressed much longer.
If I have to deal with the annoyance of the side effects from this medication I'll deal, because untreated is far worse... I'm really happy for you that they caught it early and that the small dose of meds will help get you back in track!
amanda99839 Harristm143
Posted
Mine was picked up through a general routine optician appointment when they found papilledema then was referred on from one consultant to another it took them 18 months to give me a diagnosis then had to wait 6 month for the lumba that was in august then my next appointment was december which was when i was told the papilledema had gone into remission but iv still suffered with the headaches pains behind my eyes pressure in my head & still the pulsatile tinnitus so i think its slowly coming back iv been on 500mg acetazolamide a day iv not noticed a change in headaches & stuff but i have had some of the side effects & i think they are just mild to how bad some have them.