Acetazolamide for Pseudotumor Cerebri User Reviews (Page 2)

• Rai...
• January 26, 2014

"I have been on acetazolamide 500 mg 3x per day. On the first day, I experienced tingling in my feet that lasted at most 5 minutes, and I woke up disoriented 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 pseudotumor symptoms have disappeared, though."

• Ada...
• August 1, 2016

Acetazolamide "I have only been on this stuff for a couple of weeks now, but it has been a miracle drug for me. I have seen immediate relief. My visual disturbances dropped from a few times per hour to a few times per day. I'm hoping that improves further as my optic nerves have a chance to heal. I didn't think I had too bad of headaches before being diagnosed with PTC, but ever since I've been taking Diamox and the pressure has gone down, my head feels normal again. It was like I had just gotten used to the pressure before treatment and didn't notice how bad it was until it was gone. As far as side effects, I have had some. I do get the tingles in my feet at times, but it isn't too bad. And like others, I can no longer drink carbonated beverages. Worth it."

• Vet...
• February 19, 2017

Acetazolamide "I am 18, and I have been diagnosed with idiopathic intracranial hypertension (IIH) since 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 pseudotumor cerebri. My new neurologist put me on 2,000 mg 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 10 cc instead of 8. I hope it keeps working."

• Anonymous
• February 6, 2012

Acetazolamide "I have only been taking the medication for a week. 500 mg/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!"

• 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."

• Sar...
• September 18, 2020

Acetazolamide "I was diagnosed with pseudotumor cerebri. Let's start off with for about 3 years I have had the worst pressure headache every single day. One day I noticed I had a new pulsating whooshing sound with my headache. I was vomiting. The next day I went to the store and noticed I couldn't see anything around me. It slowly started to get worse. One day I woke up and could not see at all. They immediately did exams, CT scans, and an MRI. I also saw a specialist ophthalmologist who instantly saw how swollen my optic nerves were and suggested I be admitted for a lumbar puncture. My opening pressure was 54. They drained it to 15. It's almost been a month and I have only had 1 headache. My vision came back but still is not 100% at all. Right now I am on 1,000 MG of Diamox twice a day. I have no complaints about it yet other than tingling in my feet and constant urination. Just make sure you drink lots of water and take a potassium supplement. I'm being seen by neuro-ophthalmology once a week."

• Sha...
• 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 flopping from an anxiety attack with a 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 my 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 neuro-ophthalmologist, and in 18 days I'm done, my swelling is gone and my eyesight is wonderful. It definitely is a struggle to get on this bandwagon of a med, but it works-I can vouch for that. Just remember, lots of potassium and protein really help too. 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. A shunt should be the last option due to all the risk factors that happen with it."

• Jen...
• Taken for 6 months to 1 year
• June 21, 2020

Acetazolamide "So I just found out I have IH due to there being a golf ball-sized tumor in the vascular sinus of my brain. From the MRV, it shows stretching and scarring 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 Diamox is killing me, my kidneys hurt, my urine is coffee-colored, and smells weird. I know TMI. The neurologist 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."

• for...
• 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 every day."

• Tor...
• Taken for 1 to 6 months
• January 6, 2020

"This medication acetazolamide was horrific at first! I had to take off work a month just to take it. I started taking a dose of 125 mg a night for a week, then 125 x 2 a day for a week, then 250 x 2 a day for a week. Now I take 500 mg ER once a day. Next week I go to 500 mg 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 an 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!"

• Anonymous
• June 6, 2011

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 were 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!"

• Dia...
• Taken for 1 to 6 months
• June 1, 2020

"It made my headaches and vision considerably worse at a low dose (250 mg b.i.d.). Caused a number of other side effects: horrible numbness and tingling in 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 in hands and feet; cyanosis of extremities."

• Lee...
• 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 250 mg 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 and needles in my feet up to my knees are so painful. It feels like glass or 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 neuro 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 cannot stop unless surgery because it will lead to permanent vision loss."

• Dej...
• 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 60 lbs. 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 January 2015 when it started getting worse. My vision would go in and out for about 2-5 seconds at a time. I finally saw the ophthalmologist, who said my optic nerves were swollen and referred me to a neurologist, who had me do an MRI, one 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 500 mg ER. The only cons were the metallic taste and tingling."

• IIH...
• January 24, 2010

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. Overall, just glad to be alive and without a shunt. Be well."

• Say...
• 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."

• Lau...
• 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 the 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 nearly 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 yesterday and today (not alone, too scared in case I get too lightheaded). The tingling intensifies. I cannot 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."

• Anonymous
• August 24, 2011

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 three different shunt placements, I now have a shunt that still does not work, but I have my Diamox to help me!"

• 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 it's in a world champion soccer game."

• Can...
• August 31, 2015

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."

• Bro...
• 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 every day 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 finishing my homework assignments difficult, let alone the 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."

• Mar...
• March 26, 2016

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."

• Hol...
• 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 to try this as your course of treatment. Everybody reacts differently to medications and has different limitations in how far they're willing to go to get help. I was diagnosed in April of 2015, but have had it for 4 years. Nothing ever showed on MRIs, 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-sized pressure in your brain is gone. The worst side effect for me was the spacey and drowsy-ness I felt."

• Cin...
• 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 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."

• poa...
• July 14, 2011

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."