Cervical dystonia-PCP discontinued RX for Ativan for breakthrough pain

Posted by rvan1 @rvan1, Apr 1 3:40am

I have cervical Dystonia, an extremely painful neurological condition. The only treatment for it is Botox injections in the neck to help with the muscle spasms. That does not completely stop the pain or the spasms. Over 20 years ago I was prescribed hydrocodone and Ativan for breakthrough pain and muscle spasms. My PCP has monitored my prescriptions and written the refill RX’s. Around the end of the year 2025, I was told by the PCP that the Ativan that I have been taking for over 20 years was going to be tapered off and stopped. I have not slept a night since. I only am able to sleep when I am totally exhausted. So, here I am at 4:34 AM wide awake and in pain. I am 73 years old, I’m not going to live forever and I just don’t know how much longer I can I go on like this. I just don’t know where to turn.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

bajjerfan | @bajjerfan | Apr 1 9:50am

Did your PCP say why?

ashleyharris728 | @ashleyharris728 | Apr 1 8:30pm

@rvan1 this sounds like a really difficult situation and I’m so sorry you are struggling with sleep. Can you talk this over with your PCP? I agree, ask why, and please ask for help with the taper. If you’re willing to go along with the taper, I think you need a well thought out plan, and something that is flexible based on how things go. Maybe your PCP would refer you to a specialist if they are unwilling to support you on the taper. Please do reach out to your healthcare team as you deserve support with this issue. It’s not easy to cut down on benzos so quickly.

heyjoe415 | @heyjoe415 | Apr 2 6:54am

I feel bad for you. I take 2mg of Clonazepam every day and would not be happy if my Dr wanted to taper me off the drug.

I don't understand why your PCP wants to do this. Ashley makes excellent suggestions. I think your next steps/options are 1) find out why your PCP suddenly wants you off Ativan, 2) see if you can get a referral or find another Dr who will prescribe Ativan or another type of benzo, 3) decide for yourself if you want to taper off the drug and seek out real help so you can be weaned off slowly and with minimum unpleasant side effects.

If you don't want to wean off the drug, I don't understand why your PCP would insist. Your dose has stayed the same for many years, so you're not abusing the drug. I would make these arguments to your PCP, or to a new Dr who may be willing to prescribe them for you.

I am sorry you're going through this. Please let us know what you do.

All the best.

Joe

heyjoe415 | @heyjoe415 | Apr 2 6:57am

In reply to @ashleyharris728 "@rvan1 this sounds like a really difficult situation and I’m so sorry you are struggling with..." + (show)

Thanks Ashley. These are excellent suggestions for our friend facing an unwanted taper off Ativan.

I don't understand the why of this. But any taper from benzos should be long and gradual and ideally under the supervision of a Dr specializing in this. At some point, the drug would also need to be provided by a compounding pharmacy to make the proper doses.

Joe