Protracted Benzo withdrawal

You do not mention how much benzodiazepene you were taking. Did your doctor ask you to get off of the benzodiazepene? Is he gradually tapering you off? I was able to successfully get off of Klonopin but it did take a while and I did slowly taper off. I am sorry you are having such a bad time of it now, but if your doctor wants this it most likely is a good idea in the long run. Keep on and you can get through this if done slow.

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Hi,

I was only on 2x5mg /day but for 20 years.

I first tapered too quickly end of last year. Had to reinstate in March 2018 because developed severe dystonia and muscle problems that involved my diaphragm - couldn’t breathe out without dystonia pulling my spinal joints side to side and causing damage.
Neuro put me on Baclofen which was disastorous.

Now re-tapering but my body now seems to hate the drug and every time it begins to drop from peak concentration - about 2 hours after taking it - all my back muscles and rib muscles writhe and spasm.

There is no position that is remotely comfortable.

I am very concerned about altered sensation throughout body and sudden loss of adipose tissue. I have gained weight due to constant hunger and sugar/carb craving but there is no tissue now covering bony parts. Even lying with buttocks on foam and pillow is enormously painful.

Before reinstating a I had spent 3 months on one side in bed spasming, terrified of the touch and feel of everything including partner’s hand because it feels ‘wrong’, vivid memories of whole life, grief of last 22 years of illness (diagnosed with ME/CFS in ‘96), also hypermobility Syndrome diagnosis. I basically spent three months thinking I had no choice but to kill myself but was terrified of doing it. Was beginning to lose touch with reality, so confused I couldn’t work out how to write or cut up a piece of cucumber. My brain couldn’t ‘find’ my right leg or move it. It was a hell beyond describing.

It has caused phobias of things such as paper - the feel/ sound of it frightens me, clothes, vegetables etc. Everything feels too ‘light’ sort of insubstantial. It is very frightening.

I was having terrifying experiences like my body feeling as if it was melting and pooling put across the bed. The electrical stuff in my head was getting worse.

I have had every blood test going - nothing.

I have had brain MRI.

I am waiting to have EMG tests.

I am worried it has caused lypodystrophy as that seems to fit the constant hunger and loss of adipose tissue.

I will see neurologist again soonish but it is getting harder and harder to even sit 10 mins in taxi to get there.

I have no idea what to do. Tapering is hell but body hates drug.

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The dosage of 5mg is a high level. No wonder you are having such problems. I suggest going to an er since you are having such severe problems. Please do not wait as thinking of suicide along with your other problems needs immediate attention. Thank you for your honesty in giving this information. Now please help us by getting the help you need.

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I went to the er several times earlier this year. There is nothing they can do.

I am talking to GP and neurologist.

I get support via baylissa . com and benzobuddies.

There is a full list of possible symptoms on benzo.org.uk/slistz.htm

Some ppl really get all of these symptoms.

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Hi, @jossm - welcome to Mayo Clinic Connect. I can imagine going through all the symptoms you've mentioned with tapering off of diazepam is indeed hell, as you mentioned. I'd like to introduce you to a few members who may have some input for you, like @pankaj @hopeful123 @lorraine59 @hopeful33250 @johnhans @james88 @parus and others.

Here is some Mayo Clinic information on diazepam https://www.mayoclinic.org/drugs-supplements/diazepam-oral-route/description/drg-20072333.

@jossm - has your prescribing physician had any suggestions for you as you go through this tapering process, with all that you are going through?

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The dosage of 5mg is a high level. No wonder you are having such problems. I suggest going to an er since you are having such severe problems. Please do not wait as thinking of suicide along with your other problems needs immediate attention. Thank you for your honesty in giving this information. Now please help us by getting the help you need.

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@jossm You may want to request a thyroid panel. My thought as withdrawal and some medications had mine terribly messed up. You mentioning hair loss was why.

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When I went to my GP last year with severe dystonia, loss of sensation, hypersalivation etc she was like a rabbit in the headlights. Just kept saying ‘I need a neurologist to tell me what to do!’ She has no clue and neither of the two neurologist has any idea either than say ‘don’t take any drugs not even paracetamol’and ‘Benzos are terrible and should only have been prescribed for 2-4 weeks. One told me people can get ‘Functional Neurological Disorder’ (which is current diagnosis)from long term anti depressants as well.

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Hi, @jossm - you might also be interested in checking out this Connect discussion of dystonia https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/?pg=2#comment-125502

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