Elmiron and Headaches: What Users Say

• Dia...
• Taken for 5 to 10 years
• July 11, 2019

For Interstitial Cystitis "I have had Crohn's disease for 33 years. 30 years ago, I had a vestico-enteric (colon to bladder) fistula repair. I was later diagnosed with IC as the fistula destroyed bladder lining. I was given Elmiron orally. Made me MORE ill with side effects. My Dr. decided taking orally was NOT the answer for me, so she started me on weekly bladder installations. The difference was AMAZING. It's been several years, and I'm now only needing treatments every 2-3 weeks, with minimal side effects (occasional headaches from it and diarrhea, however, that would be from Crohn's). When getting Elmiron in a catheter, almost ALL is absorbed by the bladder because it DOESN'T have to go through the digestive tract, etc. I was deathly afraid of the catheter for a while, but it works. Also, it's much cheaper than taking 3x daily. Treatment requires 2 capsules, so MUCH more affordable."

• EMS...
• Taken for 1 to 6 months
• July 13, 2017

For Interstitial Cystitis "I tried Elmiron for 6 months. It caused headaches at first, but those stopped after a few weeks. Two months in, I started losing hair. Once it started, it didn't stop. I lost hair all over, so I didn't have any bald spots, but my hair is still visibly thinner than it used to be (stopped taking Elmiron 8 months ago). It also had no effect on my symptoms. I did, however, find some relief from a combo of other drugs: amitriptyline, hydroxyzine, gabapentin, uribel, Myrbetriq, tramadol, and vaginal valium. I also took prelief, Desert Harvest aloe vera, and I tried to stick with the IC diet. Good luck to everyone. IC sucks."

• Chy...
• September 12, 2013

For Interstitial Cystitis "For 4 years, I was in and out of doctors' offices explaining to them that I was having severe bladder pain (the kind that makes you nauseous, sweaty, and feverish). Finally, I went to this one doctor and told her I had symptoms of urinary tract infections 12 times in less than 6 months. I had tried changing my diet, and nothing had helped. She put me on Elmiron, 3, 100 mg pills 3 times a day, and within 2 weeks, I could finally pee. It has been amazing, although I do suffer from frequent headaches (even when we have lowered the dose as low as 3 pills a week) and exhaustion (I had this before the Elmiron, but it has been increased while on it). I still recommend trying it, it is better than nothing."

• gou...
• October 24, 2007

For Bladder Infection "I was put on Elmiron. I rapidly developed swelling, weight gain, and blinding headaches. My doctor said headaches were seldom from the drug... he also said the weight gain/swelling were not associated with the medication. I went off the medication for five months, all problems went away. I went back on a trial of it and gained 5.5 lbs in two weeks and had headaches, as well as swelling, again!"

• Anonymous
• November 28, 2016

For Interstitial Cystitis "I recently started this medication for my IC, the side effects started right away. Fatigue, headaches, severe pain in my lower stomach, almost like constipation pains, sharp and intense. This would happen about 20-30 mins after taking the medication, and the pain would last a few hours before easing up, just in time to take the next dose, pain behind my eyes, and the hair on the top of my head started to hurt... I stopped taking the medication days later. I plan on going back to the doctor to find something else."

• mrs...
• Taken for 6 months to 1 year
• November 26, 2016

For Interstitial Cystitis "Elmiron - been on it for 9 months, 3 100 mg capsules a day. It has helped with IC. However, it has caused headaches. It also seems to interact with my SNRI, and both have caused an increase in ringing in my ears. Has anyone else had that?"

• IC7...
• Taken for 6 months to 1 year
• December 22, 2017

For Interstitial Cystitis "I took Elmiron for about 12 months back when I was first diagnosed. My urologist put me on it after doing a DMSO installation every 6 weeks for about two years with moderate success. I do not recall the dose but do recall my doctor said it was a typical starting dose. I did not notice any difference in pain or symptoms for about three months and then it was only mild to moderate relief. I did, however, experience severe diarrhea that kept me near home many days, headaches, thinning hair, and a minor rash. I wanted to continue taking it in hopes the side effects would subside and more relief would come, but my doctor decided to end the trial and to start something else. My insurance did not cover the cost, but my doctor was able to get it."

• 4Ju...
• May 12, 2010

For Interstitial Cystitis "I have had improvement on issues like frequency and pain, but the medicine causes fatigue, headache, nausea, weakness, and swelling in my limbs."