Acetazolamide for Pseudotumor Cerebri User Reviews (Page 3)

• Penny...
• Taken for 10 years or more
• July 3, 2015

"I've been on and off this medicine since 2006, I was told I'd be able to stop, but it has has not happened. It helps so much with the IH even with the tingling and taste issue side effects, I don't know what I'd do without it. I've had two spinal taps and I really do not enjoy that experience."

• bashq...
• Taken for 1 to 6 months
• October 5, 2018

"This medicine helped my migraines stop, but it caused me an insane amount of fatigued when I started it and when I stopped it. My hands, legs, feet, and sometimes other body parts tingled nonstop. Sometimes the tingle was so strong, it actually hurt. My hands tingled so much so that I couldn’t write, so I had to use my computer to take notes instead. The one good thing from this medicine was the horrible migraines I’ve been suffering through never once occurred."

• tired...
• February 19, 2017

"I just started acetazolemide a few days ago. 500mg 2x a day. I had an lumbar puncture 2 days ago and neither have relieved much of the pressure. Every time I take one of these pills I get a new symptom. My kidney function has been weaker. The pressure in my head continues. My body aches all over. The yucky taste....that is the least of my worries. Pins and needles...check. Extremely tired and feel like I've been beat. I feel like bricks are laying inside my hips. This stuff sucks!!"

• jlm
• Taken for 6 months to 1 year
• September 21, 2020

"I have been on diamox since July 2019. I take it to treat my idiopathic intracranial hypertension. I was getting really bad headaches and my my vision was blacking out. I started on 250 mg once in the morning and once at night. I noticed almost immediately that my vision wasn’t blacking out anymore. I was still getting headaches, which I did t think was going to go away because I have been getting migraines since I was 7 years old. At first the side effects were very prominent. My hands and feet would tingle all the time and go numb. I was always hearing a loud swooshing sound following by a ringing in my ears. It has been over a year since I started taking diamox and now I take 1000 mg once in the morning and once at night. I still deal with migraines but the pressure in my eyes has decreased significantly. My feet still tingle sometimes and the ringing in my ears still happens. I would rather deal with those two things than lose my vision multiple times a day."

• Dani
• Taken for 1 to 6 months
• August 19, 2016

"I absolutely depend on this medication. I am 22 years old and was diagnosed with Pseudotumor Cerebri mid April of 2016 and was severely sick...had an MRA, MRI, and a spinal tap done. I do not wish this illness on anyone. I'm stuck with this for the rest of my life. This medicine has helped a lot so I will continue on taking it. I do not have any negative side effects. I take 1500 mg."

• Nurse...
• January 25, 2014

"I was diagnosed with pseudo tumor cerebri almost two years ago now and I've had a spinal tap done after a year of crippling painful headaches, blurred vision, bright red inflamed eyes, dizziness, the spinal tap unfortunetly went wrong and I had a spinal leakage from the high inter cranial pressure with an absolute horrible spinal headache so I had to have a blood patch then put on acetazolimide with the painful tingling sensations on my face arms and feet I couldn't sleep and I pee all night. I take 1500mg of it 3 pills a day and although it's helped clear my eyes my headaches, the wind tunnel noise in my ears of the fluid is still very loud I'm totally off balance and I have forgetfulness all the time not to mention I'm always tired."

• Anonymous
• April 28, 2010

Diamox Sequels (acetazolamide) "I was experiencing blurred vision, fatigue, loss of appetite, lack of concentration and an increased amount of severe headaches. After being checked for everything under the sun in blood work I was told I was fine. About a month later the headaches and the memory and concentration issues came along with more asthma attacks. My neurologist sent me for MRI, MRA and EEG nothing. He then sent me for a spinal tap which revealed I had pressure in my head double the normal. This happened on Wednesday April 21st, 2010 (last week). I received a phone call from my neurologist who said I needed to start taking the medication immediately. I have had no appetite, consistent nausea, and I throw up on a regular basis. So I deal with it or have a shunt."

• Thump
• February 27, 2016

"Have been on Diamox X 3 weeks. Started on 250mg bid for one week, then increased to 750mg X 1 week, then increased to 500mg bid for total complete dose of 1000 MG a day. Numbness and tingling of hands and feet started almost immediately after 1st dose. With the increase to 750mg, (500mg in am and 250mg in afternoon ) I started getting horrible knee pain in both knees. I still have pulsing sound in Right ear. Constant, remains unchanged. Optic disks and papilledema and retinal damage due to IIH. Have not seen any changes or benefits due to this medication at this time. The side effects are rough. I was told by neurologist my body would automatically adjust over time to the side effects. Not sure how much longer I can continue on the med."

• LMOT
• May 11, 2015

"I have been using Diamox off and on since 2009 for pseudotumor cerbri. With the correct dosage I was able to reasonably maintain my headaches. The most common side effects I have are tingling in hands, face, and feet and dry mouth. These are tolerable side effects compared to pain off of the medication."

• CHELS
• December 22, 2013

"I was diagnosed on a wednesday and by thursday I had started taking this medication. It did not kick in until the third day when I finally woke up without a headache. However, after one day of the pill I have seen its side effects. All beverages with carbination are now out of the question, they taste horrible. Pepsi tasted like soapy dish water with a hint of bleach and I noticed the tingling in my lips. The tingling in my lips and legs however does not bother me. I just find that my legs fall asleep faster if I'm not moving them. When my lips tingle it kind of makes me laugh, it wont freak you out. Hoping that by the end of the week the headaches are completely gone!"

• Baby...
• Taken for 1 to 6 months
• August 1, 2019

"I was diagnosed with Pseudotumor Cerebri two months ago and I have been on Diamox for about 6 weeks. So far I have a love-hate relationship with this drug. It got rid of my “snow” almost immediately but the flashing lights and blurriness are still there. Any improvement is great in my opinion. The problem is with the side effects. I have gotten used to the weird food and beverage tastes and the tingling in my hands and feet are annoying but bearable. I have completely lost my energy. I am tired all the time and it is very difficult to find the motivation get through work and do what I need to get done. I feel like garbage a few days a week. I’m really struggling but I am going to try to learn to deal with it."

• Robin...
• August 21, 2015

"I absolutely hate it. Every time I take it I can't eat anything or drink anything with caffeine. It taste like copper or way off. After taking the medicine for 7months straight. I was in so much pain I couldn't walk I felt weak and sick. I took myself off and I felt great. But my eye sight hadn't changed. I delevoped carpal tunnel on this medicine. This is what that tingling sensation is. Get it checked. Remind y'all I'm only 27 yrs old. I shouldn't have all this. I recently started taking it again. And it's all the same symptoms again."

• Perse...
• Taken for less than 1 month
• July 6, 2018

"I was diagnosed in 2013, I was told you have pressure headaches, and I thought no big deal. I stopped going to my Neuro Dr and he failed to give me the actual Dx or even tell me how serious my DX is. I only learned I have IIH in 2018 when I requested my medical records, due to a worsening of my headaches, pulsating tinnutis, dizziness, visual disturbance, eye pain, pressure, horrific headaches, and feeling like I will live with a migraine like headache everyday of my life. I don't know about anyone else but when you start to think Trepanation (making a hole in your head) could be a good thing you know it is bad. I am now taking Acetazolamide again. Day 2: change in taste buds, carbonated drinks taste awful, cheese is terrible... Tingling in lips, face and hands. Moderate stomach pain. Feelings of lethargy, decreased appetite, generally feel unwell. My Dr advised some or all will go away."

• Estel...
• Taken for 6 months to 1 year
• December 18, 2017

"All I have to say is that this pill has made my life so much better. Three years ago this pseudotumor cerebri started after having my first born. I was at my heaviest at 245lb pounds. Ever since I've never been the same until now although I deal with the side effects (sleepy, muscle weakness , tiredness, tingling ) being sleepy has been the worst to cope with because I'm a mother and I have things to do BUT at least some days I'm able to function well and that's better than nothing. I also take Potassium which helps a lot for the tingling !!! I hope one day I no longer have to take these pills and finally have my life back and enjoy it ! BTW I'm 21 yrs old"

• Unity...
• Taken for less than 1 month
• May 10, 2022

Diamox (acetazolamide) "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."

• Kaykay
• Taken for less than 1 month
• September 23, 2016

"I have been taking this medicine for only two weeks after being diagnosed with pseudotumor cerebri and it is awful. I feel like everything is getting worse. Before the medication I already had the ringing in my ears, the terrible headaches, and occasionally I had numbness of my face, hands, and legs along with many other symptoms. Now since taking this medication the ring and headaches are EXACTLY the same if not worse and my feet are killing me, they are constantly "asleep" with the feeling of tiny thumb tack jabs all over...it's multiple times a day, walking, standing, sitting, laying down, I feel worse now than I did before. I don't know what to do but I know I cannot continue like this. I know that everyone reacts differently."

• Jammie
• Taken for 2 to 5 years
• January 27, 2019

"My doctors had me taking 1500mg 2x a day, my headaches went away. I had problems getting the medication so I started taking 1000mg 2x a day and I was doing well, if I didn’t take any at all I would be able to go 2-3 days before getting a headache. I went about 6 months no medication and with no headaches before they started up again. I was able to get a hold of the medication but I’m having trouble getting refills, I’ve been taking 2 pills every night and It works but I can feel them slowly coming back. I’ve been taking these pills for almost 4 years now and I’ve tried everything to take care of it, I’ve lost weight, taken headache OTC pills, coffee helps but not to get rid of them — please if anyone knows of an alternative to the medication that can help— willing to try anything at this point TBH."

• Cristil
• July 28, 2010

"I have been taking this medicine for a few weeks now. My neurologist looked in my eyes and caught the Pseudotumor Cerebri. He immediately sent me for a brain scan and a lumbar puncture the next day. He thinks it was caused by minocycline which I had been taking for my acne. I am also having to see an optometrist on a regular basis to check for vision loss. My neurologist took me off propranolol(headache preventative), the antibiotic, and all my prescription face creams. I am on 750mg right now but will be on 1000mg in a few weeks if tolerated well. My massive headaches are gone, the heartbeat in my ear is gone. The only side effects I have are the tingling in hands and feet, sodas taste flat, my appetite is gone, and I am tired a lot. I have to have blood work often."

• amand...
• Taken for 1 to 6 months
• June 23, 2017

"My experience with acetazolamide has been okay. I started taking it after my lumbar puncture to relieve the pressure. (I got IIH because it was a rare side effect of an antibiotic I was on for my acne, minocycline) it has been VERY effective at relieving the pressure, but gives really annoying side effects, like tingling of my fingers, face, and toes. Like when I'm trying to sleep my feet tingle and go crazy and it makes it impossible to sleep. It also made me have little to no appetite and I have lost 20 pounds in about 2 months. I my neurologist told me that long term use of this medication can cause kidney damage, but 6 months to a year shouldn't be a worry. (I am only going to be on diamox for 6 months. I've been on it for 4 months)"

• Iggy
• September 2, 2020

"Acetazolamide is fantastic for pseudotumor cerebri ! Fast relief from the cacophony of noises in my head, that headache I thought I didn't have because I was so used to it went away, what I thought was sciatica that never let up disappeared, and my neck and shoulders felt like they got a massage. I had to get a spinal tap first and that's when the noise let up. It took a few days for the other things to go, but what a blessing! I felt the horrible side effects as I was leaving the hospital, but I knew what to do. Research. A few notes in case you need help with the side effects of acetazolamide: most medications take something from you in return for what they do. In this case, it's folate. I strongly suggest any time you take this or any kind of psychotropic medication, take a good quality B Complex vitamin. This one also takes electrolytes. Emergen-C is a good way to help that. And drink a lot of water! I'm still losing weight and it's not all water anymore embrace the side effects that can help. Strong 10 out of 10 for Acetazolamide!"

• LPano
• Taken for less than 1 month
• September 1, 2019

"This is by far the worst medication I have ever been on. I’m a week in to taking the medication now and I’m struggling to sleep due to the pins and needles in my face and eyes. It’s just constant. I also suffer with panic disorder and my anxiety has been sky high since starting these tablets. I recommend to anyone that if you begin these tablets then ask your GP for some propranolol to go with them."

• Little...
• Taken for 1 to 6 months
• November 27, 2014

"I was diagnosed with Pseudotumor Cerebri a little over 2 months ago, after many visits to doctors, nurses and hospitals. Then an amazing neurologist who finally gave me an answer as to what was causing all my problems. I have since had 2 spinal taps and have another still to come she is looking at doing bi-weekly. but since starting this medication. I have regained most of my vision, I had lost most of. I do miss my coffee but tea still is ok. I have an allergy to the pills so I take medication to stop the hives and itching and sometimes the pins and needles in my legs bring me to tears. My face tingling makes me giggle the twitching in my face does drive me crazy, but really its all better then going blind or getting the shunt."

• Anony...
• Taken for 1 to 6 months
• December 11, 2016

"I am almost 20 years old and was diagnosed about 3.5-4 weeks ago. I got a lumbar puncture and then started Diamox and it has been an awful experience.The first week and a half I was severely exhausted had nausea and the taste issue and basically wasn't functional. Then for about a week or so I seemed to be getting better until a few days ago when I've been very rapidly getting new symptoms/side effects like severe joint pain, itchy scalp, and waking up with my eyelids swollen half shut and then this morning my lips where extremely swollen. I had to go to the ER to make sure it wasn't an allergic reaction but it seems to be just a weird reaction to the meds (not allergic). I hate it. If I didn't have to take it, I wouldn't."

• NO123...
• February 5, 2018

"I have been on Diamox for 3 weeks. I continue to have severe headaches still same pressure on my eyes and head. I can not stay awake taking this medicine. I get up and try to sit on couch and within 5 min I’m out. I see a Neurosurgeon in 3 days and I hope he can help me. I can’t even walk properly because my balance is so off. My wife is typing this as I speak."

• Calico
• Taken for less than 1 month
• September 10, 2016

"I was just diagnosed with Psuedotumor Cerebri after 3 years of medical issues. Started losing my eyesight and then they found a blood clot in the main artery of my brain. Once blood clot was treated still had fluid behind my eyes, headaches, foggy brain and no energy. The diamox has helped the foggy brain. The side effects weren't bad had tingling for few days, metallic taste and drowsiness.The drowsiness is the worst part because several other medicines I take cause drowsiness also. I did have pain in my joints for first two days but it went away. I have lost 8lbs since starting it. I will find out at the end of the month if the fluid build up behind my eyes is gone. I"