@sheeva888, and all...You are a wonderful help with your wealth of information.

He takes Seroquel for sleep and to help settle his mind. He was on Klonopin for several years and it was quite helpful, but a horrid nurse practitioner was video visiting with him during covid, didn't know nor understand his illness, and for some reason stopped cold his prescription of Klonopin. I worked for weeks to refill it and never understood the reason...nor does he. She no longer works in the field. Had he died or not already been on disability, he'd be a very wealthy man today. Since he was on 100% disability and only came close to dying from the sudden withdrawal, we couldn't mount a lawsuit.

He had every withdrawal reaction listed from the sudden stopping of the drug. I found him unconscious on the kitchen floor, he had severe seizures for the first time in his life, his heart was affected and he spent 4 very difficult days in the hospital recovering. He's still recovering. This abuse caused severe harm to him mentally and emotionally, as well as physically. He doing much better, but the Benzos are not on the plate any longer. Shameful and sad as they did help. But, he's doing ok on the Seroquel, although I think perhaps the new doc will adjust or change that med as we go.

Baclofen is excellent for his body. It helps release the tightened muscles but we're not at the optimum dosage yet. He's added another midday pill and perhaps is perfect soon. I find Robaxin helps me, but I don't have the same tightness as he.

THC is very helpful for him. It relieves the pain and helps release muscles as well. He hasn't found the best delivery system for the THC now the best blend, but hopefully will with time.

Botox saved his life when he first received injections, 10 years ago. His doctor then gave him injections in his back/neck/shoulder/ eyes/jaws/ and pectoral muscles. For the first time he says in his life, he took really deep breaths and could breathe more easily. He's not getting the chest injections now and misses them. Needs them. Botox works wonders for him.

Cold works against his body. He doesn't do well in cold climates now, even though he used to live in snow country and loved skiing, etc. No more. Florida is perfect for him. Acupuncture helps a bit. It depends entirely on the therapist and on other treatments he gets at the time. Don't know if it's an ongoing positive. Deep, deep massage is a miracle treatment for him but he doesn't get enough sessions and hasn't found the right therapist yet. Still a work in progress.

Thanks for the sharing and information. I'm encouraged there is help available now. Not a cure, we're way past that illusion but had given up on improvement at all...Today we have a sliver of hope he may have the ability to live a more mobile life with less pain and the ability to care for himself longer. All these are so important!!!!!!

Blessings again and I'll be in touch...Elizabeth

@sheeva888 @ess77
Hi I’m looking at the Stiff Person Discussion.

I believe I have it based upon the physical external, and internal tremors I have been experiencing over the last month.
The drugs I’ve seen listed by others are not compatible with daily life for me. One Baclofen at bedtime knocks me out for 10, and
I’m tired during the day…

I also have Ataxia, and dementia…