I also have been on valium for 20 years for pelvic muscle spasms. It stopped working years ago but have been unable to stop. I decided to taper 12 years ago. My GP doc at the time told me to go from 35mg to 0 in 6 days. Had convulsions and ended in the hospital emergency room. Was reinstated at 20 mg by a psychiatrist but of course terrible disabling withdrawal. Got a UTI. Urologist put me on Cipro which displaced Valium so went thru cold turkey again. Have been going down ever since. Sometimes holding for awhile but always in the ups and downs of withdrawal.
I had gotten down to 2.4 mg daily. I got a yeast infection and was prescribed fluconazole 3 days then once a week for 4 months. Turns out it is like eating grapefruit. So the Valium had built up in my system so when I stopped thé fluconazole I was in terrible withdrawal again. My psychiatrist told me I had basically doubled my dose. So I have started tapering again.
I am currently on 3.4mg daily and sometimes feel like I can’t go on.
I feel that the medical profession has disabled me.
Almost no doctors know how to get you off Benzos only how to prescribe them. There were 92 million prescriptions written last year and increasing.
The best information I have found is the Benzo coalition. They were responsible for the new FDA guidelines. Dr Christie Huff is on the board. She is a cardiologist who has been damaged by Benzos. You are your own doctor and hopefully like me, you find a doc who will allow you to direct your own taper. And one day we will be Benzo free.