Protracted Benzo withdrawal

Posted by aarniek @aarniek, Oct 30, 2016

Taken of 8mg of Ativan daily in 3 weeks and suffering terribly nearly 4 years now! Unable to walk ,have insane muscle tightness,no memory,tinnius is unbearable,unable to picture things in my mind ! After 45 months it’s worse than ever and 2 neurologists have tried only medications which all made me even worse!

I am in hell trying to get off pf diazepam prescribed for 20 years for spasm from spinal injury.
12 months of hell so far. Had to reinstate and am retapering.
Had no neuro or psych symptoms prior to withdrawal.
Muscle tightnessis horrible. Outer layer of muscle and collagen atrophied in first month off.
Constant hunger./ carb sugar cravings that cause severe panic
Altered sensation throughout body. Complete loss of internalsenstion including inability to feel full however much I eat.
Terror of everything including ordinary things in living space.
Severe hyperacusis – my own voice sounds like I am shouting down a distorted megaphone in to my own head.
Cognition terrible.
Dementia- like symptoms.
Weakness.
Breathlessness.
Heart beating very hard.
Inner vibrating.
Burning and chemical smell. Or everything smells too intense.
Can’t taste or feel food properly in mouth.
Constant hissing/fizzing/electrical feeling in head like a low level seizure.
World feels too ‘insubstantial’ objects feel too light and sort of physically ‘ghostly’ as if everything could just float away.
Can’t feel body properly.
Feeling like body is ‘melting’ pooling out across bed.
Feeling like brain is dissolving or ‘hollow’.
Hair falling out, going bald.
Food tastes rotten or wrong.
And loads more – utterly horrific. Not sure I will survive.

If I didn’t have food issues I would do Keto diet.

REPLY
@jossm

I am in hell trying to get off pf diazepam prescribed for 20 years for spasm from spinal injury.
12 months of hell so far. Had to reinstate and am retapering.
Had no neuro or psych symptoms prior to withdrawal.
Muscle tightnessis horrible. Outer layer of muscle and collagen atrophied in first month off.
Constant hunger./ carb sugar cravings that cause severe panic
Altered sensation throughout body. Complete loss of internalsenstion including inability to feel full however much I eat.
Terror of everything including ordinary things in living space.
Severe hyperacusis – my own voice sounds like I am shouting down a distorted megaphone in to my own head.
Cognition terrible.
Dementia- like symptoms.
Weakness.
Breathlessness.
Heart beating very hard.
Inner vibrating.
Burning and chemical smell. Or everything smells too intense.
Can’t taste or feel food properly in mouth.
Constant hissing/fizzing/electrical feeling in head like a low level seizure.
World feels too ‘insubstantial’ objects feel too light and sort of physically ‘ghostly’ as if everything could just float away.
Can’t feel body properly.
Feeling like body is ‘melting’ pooling out across bed.
Feeling like brain is dissolving or ‘hollow’.
Hair falling out, going bald.
Food tastes rotten or wrong.
And loads more – utterly horrific. Not sure I will survive.

If I didn’t have food issues I would do Keto diet.

Jump to this post

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?

REPLY
@jossm

I am in hell trying to get off pf diazepam prescribed for 20 years for spasm from spinal injury.
12 months of hell so far. Had to reinstate and am retapering.
Had no neuro or psych symptoms prior to withdrawal.
Muscle tightnessis horrible. Outer layer of muscle and collagen atrophied in first month off.
Constant hunger./ carb sugar cravings that cause severe panic
Altered sensation throughout body. Complete loss of internalsenstion including inability to feel full however much I eat.
Terror of everything including ordinary things in living space.
Severe hyperacusis – my own voice sounds like I am shouting down a distorted megaphone in to my own head.
Cognition terrible.
Dementia- like symptoms.
Weakness.
Breathlessness.
Heart beating very hard.
Inner vibrating.
Burning and chemical smell. Or everything smells too intense.
Can’t taste or feel food properly in mouth.
Constant hissing/fizzing/electrical feeling in head like a low level seizure.
World feels too ‘insubstantial’ objects feel too light and sort of physically ‘ghostly’ as if everything could just float away.
Can’t feel body properly.
Feeling like body is ‘melting’ pooling out across bed.
Feeling like brain is dissolving or ‘hollow’.
Hair falling out, going bald.
Food tastes rotten or wrong.
And loads more – utterly horrific. Not sure I will survive.

If I didn’t have food issues I would do Keto diet.

Jump to this post

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.

REPLY
@jossm

I am in hell trying to get off pf diazepam prescribed for 20 years for spasm from spinal injury.
12 months of hell so far. Had to reinstate and am retapering.
Had no neuro or psych symptoms prior to withdrawal.
Muscle tightnessis horrible. Outer layer of muscle and collagen atrophied in first month off.
Constant hunger./ carb sugar cravings that cause severe panic
Altered sensation throughout body. Complete loss of internalsenstion including inability to feel full however much I eat.
Terror of everything including ordinary things in living space.
Severe hyperacusis – my own voice sounds like I am shouting down a distorted megaphone in to my own head.
Cognition terrible.
Dementia- like symptoms.
Weakness.
Breathlessness.
Heart beating very hard.
Inner vibrating.
Burning and chemical smell. Or everything smells too intense.
Can’t taste or feel food properly in mouth.
Constant hissing/fizzing/electrical feeling in head like a low level seizure.
World feels too ‘insubstantial’ objects feel too light and sort of physically ‘ghostly’ as if everything could just float away.
Can’t feel body properly.
Feeling like body is ‘melting’ pooling out across bed.
Feeling like brain is dissolving or ‘hollow’.
Hair falling out, going bald.
Food tastes rotten or wrong.
And loads more – utterly horrific. Not sure I will survive.

If I didn’t have food issues I would do Keto diet.

Jump to this post

@jossm, I want you to know that many of us that are trying to taper, are experiencing the hell that you are going through.I too have been on a benzo for several decades, and came to a point where I ended up in an emergency room twice! Have you let your doctor know what you are going through? Palpitations can make you think you are having a heart attack, been there, but confused about hair falling out. I would get to my GP as soon as possible, but we are here to help support you. Blessings Lorraine

REPLY
@lorraine59

@jossm, I want you to know that many of us that are trying to taper, are experiencing the hell that you are going through.I too have been on a benzo for several decades, and came to a point where I ended up in an emergency room twice! Have you let your doctor know what you are going through? Palpitations can make you think you are having a heart attack, been there, but confused about hair falling out. I would get to my GP as soon as possible, but we are here to help support you. Blessings Lorraine

Jump to this post

@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.

REPLY
@johnhans

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.

Jump to this post

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.

Liked by Leonard

REPLY
@jossm

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.

Jump to this post

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.

REPLY
@johnhans

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.

Jump to this post

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.

REPLY
@jossm

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.

Jump to this post

Also try googling Cass Bad Benzos.

REPLY
@lisalucier

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?

Jump to this post

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.

REPLY
@johnhans

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.

Jump to this post

5mg of diazepam (Valium) is actually quite a low dose compared to other people I talk to. Xanax and Klonopin are MUCH stronger. You can find the comparison tables in the Ashton Manual.

REPLY
@parus

@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.

Jump to this post

Thanks! Everything possible has been checked.

REPLY
@jossm

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.

Jump to this post

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

REPLY
@lisalucier

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

Jump to this post

Thanks! It is caused by benzo WD. I can’t take anything for it due to damaged brain from Benzos. Have discussed it with neurologist.

REPLY

I read it's a symptom of stress/ anxiety so if we can take something for those,like the benzo I am suffering from the protracted benzo withdrawal from,the muscle issue would be relieved and what can we take that is not a benzo or benzo like medication?

REPLY
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