Diamox for Pseudotumor Cerebri User Reviews (Page 2)

• Sar...
• September 18, 2020

"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."

• Anonymous
• February 6, 2012

"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!"

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

"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."

• 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 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!"

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

• Can...
• 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."

• Mar...
• 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."

• ohi...
• Taken for 1 to 6 months
• December 27, 2024

"Migraine sufferer of 5 years, labeled chronic. Finally got my neurologist to send for MRI, MRA, and LP. Opening pressure was 24 during LP, closed at 19. Started Diamox and built up to 1000 mg daily. 500 mg in the am and 500 in the pm. Symptoms include tingling in feet more than hands, metallic taste lasted the first two weeks. I'm not a huge soda drinker but will have a Coke or Sprite. No issues until I had a Dr. Pepper, tasted like pennies. Yuck! Headache days have decreased from about 20 per month to 2 or 3. Last a couple of hours, then no issues but worse around my cycle. I've also stopped all other medications such as Tylenol, Excedrin, Aleve. My vision has improved as well and not so blurry in the morning. I do still have ringing in the ears occasionally and pulsating in my head, but I give it an A- overall from where I started 2 months ago."

• Naw...
• June 30, 2020

"I am 50 years old with a BMI of 28.9. I was suffering from a headache for 3 months. After taking Diamox 250, I started to gradually feel better, but after a month, I started having a high-pressure headache, which was worse than before."

• Sba...
• Taken for 6 months to 1 year
• July 26, 2021

"First of all, I am happy for everyone that has benefited from this medication. For me, I don't feel this medication has done anything for me. I started taking a small dose, 250 mg, when I was diagnosed with IIH back in September of 2020. Since then, my headaches have not gone away, I am now up to 1625 mg per day. Yes, I have lost 30 lbs. The worst side effects for me are diarrhea, tingling in my feet, ringing in my ears, and all-day fatigue. The lack of energy and the headaches continue to be so massive that they debilitate me so badly, but I have to work like this, either work or be homeless. They also did a lumbar puncture, which caused a tear in my dura, 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 a 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."

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

"So I was started with 250 mg twice a day with Diamox, and I absolutely could not tolerate this medication. I even went down to 125 mg twice a day, still couldn't do it. To me, this medication is 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."

• jel...
• Taken for 1 to 6 months
• September 4, 2019

"Makes my feet tingle, and I hear ringing in my ears all the time."

• Anonymous
• Taken for less than 1 month
• June 2, 2017

"Confusion, lethargy, diarrhea, hyperchloremia, CO2 16, nausea, dizziness."

• IIH...
• 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."

• Yo1...
• March 2, 2016

"Diamox didn't work, and I hate it."