Diamox for Pseudotumor Cerebri User Reviews (Page 2)
Diamox has an average rating of 6.5 out of 10 from a total of 34 reviews for the off-label treatment of Pseudotumor Cerebri. 53% of reviewers reported a positive experience, while 26% reported a negative experience.
Reviews for Diamox
- Anonymous
- February 6, 2012
"I have only been taking the medication for a week. 500mg/day. I have lost 11 pounds in that week due to the loss of appetite. When I do eat I get sick. Nothing tastes good to me anymore. I'm having some crazy dreams at night. I urinate every 2 hours minimum. I get a tingling feeling in my fingers, face and legs. I'm having a spinal tap this Friday to relieve some pressure, I'm hoping after that happens I won't have to take this medication anymore. It has alleviated the headaches though!"
- Jeni
- Taken for 6 months to 1 year
- June 21, 2020
"So I just found out I have IH due to there is a golf ball sized tumor in the vascular sinus of my brain. From the MRV it shows stretching and scaring on the opposite side they believe in December/January when the headaches got so bad is when that happened. I received the results two Fridays ago. This Diamos is killing me my kidneys hurt my urine is coffee colored and smell weird. I know TMI. The nuerologist nurse practitioner keeps telling me it's. Normal side effects however I haven't eaten in 5 days and if I take a drink I better be VERY near to the potty. This drug is killing me I'm sure. And I'm still in pain still hear things cry always going crazy but my vision does not have black stripes and no peripheral vision."
- Anonymous
- June 6, 2011
"This medicine helped me so much to relieve some of the pressure in my head and leveled the pressure in my eyes. I also have edema of the legs and it gets so bad that at times I retain over 20 lbs of water which slows me down terribly. The pills helped me greatly and kept me active. However my doctor decided to take me off them and put me on Topamax because though the pressures were down, the headaches and pain was still there. I have gained so much weight because I barely move at times and have not been as active as I once was. My legs and now my abdomen are filled with fluid. Wish I could get Diamox again!"
- MaraN...
- March 26, 2016
"Diamox put me in remission after about six months, but it began to cause tinnitus and hearing problems. My hearing is fine now, but I cannot take Diamox again if my PTC returns. Just something to keep in mind. Tinnitus and hearing issues are considered rare side effects, but they can happen."
Are you taking this medicine?
- Anonymous
- August 24, 2011
"I was diagnosed with this condition in 1997. The radiologist said they did not know what caused it and there was no cure but there is medicine to maintain. Many years later with 3 different shunt placements...I now have a shunt that still does not work but I have my Diamox to help me!"
- Candy...
- August 31, 2015
"I have been taking this for a month and my blood sugar keeps dropping out. I feel terrible and weak all the time. I get numbness everywhere. I have three sons to care for and it's hard. I'm glad most of my symptoms seem to be normal as I have read yours. The pressure in my head hasn't lessened though. They gave me migraine medicine but I'm afraid to take it if it'll put me to sleep during the day. I keep thinking about calling my neurologist. I'd like to know what to do at this point."
- Unity...
- Taken for less than 1 month
- May 10, 2022
"So I was started with 250mg twice a day with Diamox and I absolutely could not tolerate this medication. I even went down to 125mg twice a day still couldn't do it. To me this medication is the awful, the side effects are horrendous and please do not believe the doctors that this is just a diuretic, Diamox breaks down your CFS and I'm just not comfortable with taking a medicine that does that. It caused intense nausea, vomiting, anxiety, depleted my electrolytes which is very dangerous and gave me kidney infections and I was only on it for 2 weeks. It can also cause kidney stones and failure..so that's awesome. Please please look into this medication before taking it. I've gone with more alternative methods like acupuncture and lymphatic massage and had much better results and no nasty side effects."
- Nawaf
- June 30, 2020
"I am 50 years old with a BMI of 28.9. I was suffering from a headache for 3 month. After taking diamox 250 I started to gradually feel better but after a month I started have high pressure headache which was worse than before."
- Sbano
- Taken for 6 months to 1 year
- July 26, 2021
"First of all I am happy for everyone that has benefit from this medication, for me I don't feel this medication has done anything for me. I started taking a small dose 250mg when I was diagnosed with IIH back in September of 2020, since my headaches have not gotten away, I am now up 1625mg per day. Yes I have lost 30lbs, the worst side effects for me are diarrhea, tingling in my feet, riming on my ears and all day thing, lack of energy and the headaches continue to be so massive that they debilitate me so bad, but I have to work like this, either work or be homeless. They also did a lumber puncture, which did a tear in my dora and they had to do an epidural blood patch and it took a month to recover. I was told that if this medication doesn't help and losing weight, then the next option is brain shunt, I am just so tired of taking this medication, which I don't see any benefit or help with my headaches which is what changed my life and then the constant blurred vision."
- jelema
- Taken for 1 to 6 months
- September 4, 2019
"Makes my feet tingle and I hear ringing in my ears all the time"
- Yo136...
- March 2, 2016
"Diamox didn't work and I hate it"
- Anonymous
- Taken for less than 1 month
- June 2, 2017
"Confusion, lethargy, diarrhea, hyperchloremia, CO2 16, nausea, dizziness"
- IIHer
- Taken for 5 to 10 years
- July 21, 2020
"- More side effects that aren’t mentioned. - Okay short term but long term it gets a bit much"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
Learn more about Pseudotumor Cerebri
Care guides
Medicine.com guides (external)
More about Diamox (acetazolamide)
- Check interactions
- Compare alternatives
- Reviews (71)
- Drug images
- Side effects
- Dosage information
- During pregnancy
- Generic availability
- Drug class: carbonic anhydrase inhibitor anticonvulsants
- Breastfeeding
"i was diagnosed in 2014, and I can honestly say it has been a very difficult disease to handle......though I know there are much worse out there. I was put on Diamox and my headaches or vision problems did not improve, in fact they got worse. I have had more migraines since starting this than I ever did before. The side effects are awful........no appetite, foggy head (I am barely able to function day to day), nausea, everything you try to eat tastes AWFUL. I am glad this has worked for some, but I can not continue taking it."