Acetazolamide and Loss Of Appetite: What Users Say

• Mon...
• Taken for 1 to 6 months
• February 12, 2020

Acetazolamide for Hydrocephalus "I had to take this medication due to having fluid around the brain. The doctors stated I had swelling behind my eyes, which caused headaches and loss of vision. This medicine was disgusting, to say the least. When I started this medicine, I was 177 lb, I weighed 155 by the time I finished the bottle. I had no appetite, no sex drive, dry mouth, and could only drink water or a juice I found that I liked and could actually taste! Soda tasted like metal. I took this medicine for 4 weeks. In August, I had shunt surgery! That was one of the best decisions of my life. My vision is a lot better, and I’m free to wear whatever I like! Hope you all get better soon! If you have other options other than taking this medicine, by all means, do so! You will be a lot happier and not miserable!!!!"

• Sar...
• June 9, 2015

Acetazolamide for Pseudotumor Cerebri "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 cannot continue taking it."

• rls...
• July 4, 2019

For Edema "My ENT prescribed Diamox for Meniere's disease, a buildup of fluid in the inner ear. I will experience tinnitus, vertigo, ear fullness, and visual disturbances, including light sensitivity. Once starting Diamox, all of my symptoms were significantly minimized. I also struggle with migraines and noticed since taking Diamox, I have not had one episode. Like others, I experience diarrhea, but increasing my daily water intake has helped. I too also experience tingling in my hands and feet, but it's not intense. I just learned this medicine can suppress appetite, and this does occur with me. I also have more energy, so much, most nights I have insomnia. Has anyone else experienced this? Overall, for me the benefits certainly outweigh the costs. I've been granted a new outlook on life. Before Diamox, the Meniere's left me in a fog, both in vision and hearing. If anyone has also experienced trouble sleeping, please share what you have found to help, I would love to hear it!"

• Anonymous
• February 6, 2012

Acetazolamide for Pseudotumor Cerebri "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!"

• Anonymous
• May 19, 2010

Acetazolamide for Glaucoma "I had cataract surgery 7 days ago. Diamox is very effective to reduce the pressure in the eye, but the problem is side effects. I had no appetite, constipation, and hearing loss. I am hoping it will go away in a few days. Anybody out there had a similar experience, please share with us. Thanks."

• Hen...
• September 23, 2016

For Glaucoma "I was taking Diamox twice daily for two weeks to reduce eye pressure before cataract surgery. Very effective in lowering pressure, but side effects were troublesome. It makes you very tired, constipated, dizzy, lack of appetite, some temporary hearing issues in one ear. A few days after stopping the pills, everything was back to normal."

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

For Pseudotumor Cerebri "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."

• IIH...
• January 24, 2010

Acetazolamide for Pseudotumor Cerebri "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."

• aur...
• Taken for 1 to 6 months
• February 20, 2014

For Glaucoma "I have iritis, so to get rid of the inflammation, I was given Ozurdex, which caused intense pressure to 40%. The Dr. gave me acetazolamide, which got rid of the pressure but caused these insane rashes everywhere on my legs and extreme muscle pain. The loss of appetite is not a big deal to me, as well as the tingly toe thing, but I have those as well. I've been on this medicine for 2 months and just realized my symptoms are as a result. I seem to be the only one with these crazy side effects, so if anyone else has them, please share and tell your Dr."

• Anonymous
• April 28, 2010

Acetazolamide for Pseudotumor Cerebri "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 an 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."

• Anonymous
• April 28, 2010

Acetazolamide for Pseudotumor Cerebri "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 an 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."

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

For Pseudotumor Cerebri "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. 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.)"

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

For Pseudotumor Cerebri "I was diagnosed in 2013. I was told I have pressure headaches, and I thought no big deal. I stopped going to my neuro doctor, and he failed to give me the actual diagnosis or even tell me how serious my diagnosis is. I only learned I have IIH in 2018 when I requested my medical records due to a worsening of my headaches, pulsating tinnitus, dizziness, visual disturbance, eye pain, pressure, horrific headaches, and feeling like I will live with a migraine-like headache every day 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 doctor advised some or all will go away."

• Chi...
• Taken for 1 to 6 months
• March 20, 2019

For Glaucoma "My worst side effect experience is lack of appetite and lethargy at times, now I have some diarrhea. But my eye pressure is down to 18 in one eye, 13 in the left, as of the last check, but the loss of appetite concerns me."

• Ble...
• February 13, 2018

For Hydrocephalus "I am currently on this medication, 500 mg, 2x a day to treat the excess fluid gain on my brain that causes seizures. The first dose of this medication, I instantly had a really bad taste for soda and for most anything that I ate or drank. I experienced extreme tiredness, dizziness, headaches, and had a decrease in appetite. After about 2 days, I noticed numbness and tingling in my hands and feet, ringing in my ears, a stabbing pressure pain in my eyes, and abdominal pain. I had to pee every 20-30 minutes and had extreme diarrhea instantly after every meal, all my bowel movements are diarrhea. After telling my neurologist about it, he said they are common and to take it once a day for 2 weeks to let my body adjust, then back to 2x. I fluctuate back and forth with the once and twice a day because he will not let me stop taking it, and all of the effects still remain after 8 months of treatment, but it has decreased the fluid levels on my brain, and I lost 30 pounds are the only benefits."

• Rob...
• August 21, 2015

For Pseudotumor Cerebri "I absolutely hate it. Every time I take it, I can't eat anything or drink anything with caffeine. It tastes like copper or way off. After taking the medicine for 7 months 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 eyesight hadn't changed. I developed carpal tunnel on this medicine. This is what that tingling sensation is. Get it checked. Remind y'all I'm only 27 years old. I shouldn't have all this. I recently started taking it again, and it's all the same symptoms again."

• Eri...
• Taken for less than 1 month
• June 29, 2022

For Glaucoma "Well, most importantly, it did what it was supposed to. It kept my pressures down for two weeks until I could have surgery on my eye. I only had about 5 percent of optic nerve, and vision was bad. Pressures were 40 to 50. Doctor said I had to have surgery immediately, but two weeks was all they could do. Within minutes of my first pill, my appetite was gone. Not much happening except loss of appetite. Then, the day before surgery, 13 days on the drug, I got very sick. Severe back pain and nonstop vomiting. Eventually, I went to urgent care where they found a UTI. Coincidence? Don’t think so. The drug most likely saved what sight I had left. I would take it again because of what was at stake. But that vomiting side effect is pretty rough."

• Kla...
• August 30, 2015

For Hydrocephalus "I have postop hydrocephalus from a pineal cyst being removed with my pineal gland. I had brain surgery in December, all my symptoms went away, and then I got some double vision and my eyes showed papilledema. I had a spinal tap and went from 30 to 6 and then had a blood patch. I started my second round of Diamox the day of the spinal tap. I remembered the tingling and no appetite and no taste for caffeine. I forgot I would pee all night and be tired for the first little while. Just ready for these first symptoms to pass. I'm on 500 mg twice a day and gonna take vitamin C to help with tingling."

• Bri...
• September 17, 2021

For Pseudotumor Cerebri "This medication is absolutely horrible. I’ve been on it for only a week and have been experiencing every side effect. Now I have blurred vision and no one has the answers. The doctors lied and said it had something to do with weight. I weigh 189 and am 5’1. I don’t have glaucoma or high blood pressure, never had a seizure. This medicine has altered my whole body, and I cannot function. I lost my appetite and taste. I feel numbness and tingling in my hands and feet, etc. I WOULD NOT RECOMMEND THIS MEDICINE TO ANYONE."

• cri...
• Taken for 1 to 6 months
• November 13, 2022

For Pseudotumor Cerebri "I don’t see sparkles or have blind spots anymore. When I get headaches, they are no longer unbearable and make me miserable. I’m able to function. They’re like a “normal” small head pain now. I take 1000 mg daily right now. I noticed a change the day I started this medication. Less pressure in my head and behind my eyes, and less painful headaches. This medication is different for everyone. My first side effect was severe heartburn. I mentioned this to my neurologist, and they recommended an OTC heartburn med. So I take that also now. Some other side effects I have had are tingling lips, mouth, legs, and fingertips. Whenever I eat, it feels like I have pop rocks in my mouth. Sometimes my knees feel tight and my feet tingle so bad it’s painful, but it only lasts a minute or two. I’ve also had lack of appetite, fatigue, small hearing loss, brain fog, and increased urination. The side effects are worth it for me. I can actually function at 85% now instead of 5%."