Acetazolamide for Pseudotumor Cerebri User Reviews (Page 2)

• Vetdoc
• February 19, 2017

Diamox (acetazolamide) "Hello. I am 18 and I have diagnosed with Idiopathic intracranial hypertension (IIH) December of 2016. As we all thought, I had a concussion because I played volleyball but it didn't quite flow with the big blind spot in my left eye and the perfect MRI and MRE scan results. Well, as my opening pressure from an LP was 49.7, more than half for my age, and being the first patient for my pediatrician, I have Psuedo Tumor Cerebri. My new neurologists put me on 2,000mg a day. Yes, this caused severe abdominal and GI upset for almost the first month I was taking it and a little bit here and there. My ophthalmologist has seen an improvement. My second LP as of 1/30/17 had an opening pressure of 28.7. They drained me to normal and took 10cc of instead of 8. I hope it keeps working."

• Sarah...
• June 9, 2015

Diamox (acetazolamide) "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."

• Anonymous
• November 3, 2010

Diamox (acetazolamide) "I've been on this medication for 2 weeks because of increased pressure in my spinal fluid due to head injuries. While the medicine works amazingly well on the headaches, my brain basically turns to mush when I'm on it and I can't function well enough to do my job or understand my school work. I also have really annoying tingling feelings in my hands, feet and lips that hasn't yet gone away. I wish there was a way to get this to keep working for my headaches."

• Anonymous
• February 6, 2012

Diamox (acetazolamide) "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

Diamox (acetazolamide) "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."

• Rainb...
• January 26, 2014

"I have been on acetazolamide 500mg 3xper day. On the first day I experienced tingling on my feet that lasted at most 5 minutes and I woke up disorientated on whether it was 9 the same night, the next night, or the next morning. I have a ridiculously busy schedule and I'm always tired so I am still unsure if I have experienced fatigue due to the medicine. Get the capsules instead of the tablets if possible. Tablets release all 500 mg at once. The capsules release little by little so you don't get all the side effects just dumped on you. With the capsules side effects seem to be lighter in intensity. Soda tastes like crap. I already urinate frequently due to my water intake. My psuedotumor symptoms have disappeared though."

• Sam
• Taken for 6 months to 1 year
• April 23, 2019

"Acetazolamide isn’t fun but it does work really well for me. The headaches and vision loss I was suffering from pseudotumor cerebri were way worse than the side effects of this medicine. I haven’t noticed any of the side effects alleviating over time. I experienced my hands, mouth and feet tingling so much it hurt. It would wake me up at night and I’d have to walk around till the tingling stopped. My mood and energy have definitely been low since taking this medication. The worst side effect is probably the way food tastes, for me it is almost everything, not just carbonated beverages."

• Shan
• Taken for 1 to 6 months
• April 4, 2021

"I've been taking this medication for about a month so far. My opening pressure was 36 but I also was throwing up and croppy flopping from anxiety attack with needle in my back and that caused me to be laid up for 2 months alone. When I first started this medication it was miserable to say the least. I had tingles in hands feet and face, felt nauseous and weak, lightheaded, had chest pain also skin peeling. Most of it went away after 2 weeks with a little help of lemonade for nausea and walks as much as I could. I went to see my nueroptomoplogist and in 18 days I'm done, my swelling is gone and my eye sight is wonderful. It definitely is a struggle to get on this band wagon of a med but it works I can vouch for that. Just remember lots of potassium and proteins really help to. Hope this helps for others there is a light in the tunnel and there are other medications if this isn't a suitable one for you. Shunt should be last option due to all the risk factors that happens with it."

• Diano
• Taken for 1 to 6 months
• June 1, 2020

"It made my headaches and vision considerably worse at a low dose (250mg b.i.d.). Caused a number of other side effects: horrible numbness and tingling on hands, feet, arms, legs and face; fatigue; loss of appetite; nausea; vomiting; diarrhea; tons of kidney stones; muscle weakness; severe muscle cramping; loss of bladder control; loss of muscle control (unable to move fingers, face twitching); loss of feeling on hands and feet; cyanosis of extremities."

• Leena
• April 11, 2021

"I have been diagnosed with IIH (Idiopathic Intracranial Hypertension) they put me on diamox. I am a rarer case because I am a thin woman compared to most. They hoped the diamox will help bring down the fluid. I started on 250mg twice daily. Anything carbonated tasted dull and metallic. My ENTIRE body will tingle and go numb but at different times throughout the day multiple times. The WORST experience for me is I am peeing all the time and my face is also breaking out, and my hands are numb and tingling for HOURS throughout the day. Overall the pins/needles in my feet up to my knees are so PAINFUL. It feels like glass/knives and this is no exaggeration. I am left in tears and it happens many times a day on each leg and I wake up out of my sleep several times a night. My nuero said it gets better over a span of 2-3 months and now it has been 5 months. He upped my dose and I am absolutely miserable .My neuro says I can not stop unless surgery because it will lead to permanent vision loss."

• Anonymous
• June 6, 2011

Diamox (acetazolamide) "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!"

• Torn
• Taken for 1 to 6 months
• January 6, 2020

"This medication acetazolamide was horrific at first!!! I had to takeoff work a month just to take it. I started taking a dose of 125mg a night for a week, then 125 x2 a day for a week, then 250 x2 a day fir a week. Now I take 500 mg ER once a day. Next week I go to 500mg ER 2 x a day. I was so sick I couldn’t get out of bed the first two weeks. Food and drinks still taste strange, still very sick just not as bad, but sadly trying to adjust as my new normal. Still tingling in hands/feet. Sharp headaches, nausea, breathing issues, tired, eyes look weak, dizzy, always in a haze. Eating anything seems to enhance my nausea. I had trouble walking one week and had to have a epidural steroid shot in my back. I have lived with ringing in both ears for over a year now. The medicine has made my ringing worse! I can’t stop the medicine. So I don’t have a choice. I have to take the medicine or risk going blind. However, I am pretty miserable!!!"

• MaraN...
• March 26, 2016

Diamox (acetazolamide) "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."

• forever
• Taken for 1 to 6 months
• May 6, 2013

"The first two weeks I had general numbness of my whole face, tried to take a sip of soda and everyone thought I was overreacting to how disgusting it tasted. I also had terrible pins and needles in my feet that woke me up in the middle of the night. That has gone away now but when they upped my dose I discovered now that I am having severe joint pain in my knees and have been unable to function regularly at my job which I was very good at before. I forget stuff very easily, which I didn't know is a side effect but I saw others here stated the same. I still give it a 10 because despite the side effects it beats the alternative because I have not had a headache since I started the medication and my eyes get better everyday."

• Anonymous
• August 24, 2011

Diamox (acetazolamide) "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!"

• Laurax
• May 4, 2020

"I have dealt with years of intracranial hypertension, which after this lockdown and putting on 'a few pounds' in such a short space of time, I came out of remission. Ended up back in hospital having a lumbar puncture once again, and my neurologist decided to put me on these tablets. I am on 3x 250mg It is safe to say I have had near all of the side effects (I am on day 6) and so far..... Lightheadedness, severe fatigue, tingling in my fingers, feet, face, lips.. but I tend to giggle them off. I found the energy to go for a walk yesturday and today (not alone, too scared incase I get too lightheaded) the tingling intensifies. I can not drink anything fizzy, the taste is just awful! I get tiny headaches but nothing compared to what I had to deal with when going through IIH. I thought about stopping the medication, but I will persevere for now and see how I get on for the next month. It is lucky I am on Furlough, or there is no way I would be able to handle taking them and work."

• Dejanee
• Taken for 2 to 5 years
• July 17, 2017

"I was diagnosed with Pseudotumor Cerebri in February 2015. When I got pregnant with my son I gained over 60lbs. I had him in May 2014 and didn't have any symptoms until October 2014 when my eyesight went out for a second or two and it didn't happen again. I didn't pay it any mind until in January 2015 it started getting worse. My vision would go in and out for about 2-5 seconds at a time. I finally seen the ophthalmologist who said my optic nerves were swollen & referred me to a neurologist who had me do an MRI, 1 spinal tap (where my pressure was so high at 44, so they relieved some of the spinal fluid down to 20), then they finally decided to put me on Acetazolamide 500mg ER. The only cons were the metallic taste and tingling."

• IIH-PTC
• January 24, 2010

Diamox Sequels (acetazolamide) "In February of 2008 I was diagnosed with Intracranial Hypertension due to a rare side effect caused by Minocycline prescribed to me by a dermatologist. This medication, along with my lumbar puncture, has stopped my vision loss. The side effects have been very difficult at times. I have experienced all of the common side effects including loss of appetite (lost 40 pounds), tingling from hands to elbows and toes to knees, and intestinal problems. Brain pressure remains high but vision is saved. Over-all just glad to be alive and without a shunt. Be well."

• Saywhat
• Taken for less than 1 month
• July 1, 2015

"Good. It's only been two days, but I feel much better already. My foggy head feels like it's clearing, my eyes feel clearer, my headaches are minimal and I feel great. I'll come back and update in a few months, but I just wanted to offer my positive experience, because all you ever see here are negative reviews. Yeah, I've had a bit of tingling, but it's really nothing - just like normal pins and needles, which I was getting anyway, so I can't even tell if it's this or not; even if it is, it's not distressing in the least. I think I'm coping well because my neurologist said to me 'the people that don't do well on this medicine usually misinterpret the side effects as dangerous. They're not'. Now, I feel perfectly safe with the side effects."

• Big...
• October 23, 2015

"In the ER for the 2nd time with a horrific headache. The first time I was told my migraines escalated. I knew my body well enough to know this was no migraine. I started this medicine in the hospital for two days and can say this is the first time in over 6 months I have not had a headache. I can tolerate the tingling and the weird taste carbon has now but that is a minor inconvenience compared to head feeling like its in a world champion soccer game."

• Holly...
• Taken for 1 to 6 months
• September 30, 2015

"I have had a less than par experience from this drug, but if you have been recently diagnosed with PTC, I would highly encourage you trying this as your course of treatment. Everybody reacts differently to medications and has different limitations in how far their willing to go to get help. I was diagnosed in April of 2015, but have had it for 4 years. Nothing ever showed on MRI's so they kept giving me migraine medicines but nothing ever worked. Once I was diagnosed and took the medicine the pressure went away, but the side effects started. Tingling and bad tasting carbonation is something that you can deal with when the bowling ball size pressure in your brain is gone. The worst side effect for me was the spacey and droggy-ness I felt."

• Cindy...
• April 25, 2016

"I have been on diamox for ten years. Side effects are horrible. And I also have noticed more and more side effects the longer I take the meds. Without this medication I have seven to eight episodes weekly. It really a is a miracle drug!!!! For the tingling sensation I take emernc it's a vitamin and immune booster. I don't drink any sodas at all or anything that has bubbles. I also found a whole list of medications and food you can't take while taking diamox on Pinterest and as long as I stay on top of everything I feel better"

• poamf...
• July 14, 2011

Diamox Sequels (acetazolamide) "While there are some side effects, and it doesn't completely eliminate my condition, Diamox has allowed me to live a normal life. Most people do not even know that I am sick. I also have not had to have a shunt."

• Brook...
• March 6, 2017

"I've been taking this medication regularly for the past month and want to cry. I'm 20 years old, a healthy female, and was diagnosed with pseudotumor cerebri. I call my mom nearly everyday complaining of a new pain. From the horrible tingly sensation in my hands and feet, to the horrible confusion, and now extreme pain in my abdomen, I'm ready for this all to stop. I'm on 500 mg/daily and can't even operate my vehicle! I am always so out of it it makes finished my homework assignments difficult let alone to constant new pains I always complain about. I am pretty tough but when it comes to seeing my doctor every week due to the side effects of this medication, it's not worth it."

• Candy...
• August 31, 2015

Diamox (acetazolamide) "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."