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!

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Magnesium citrate 400mg pd, with a small amount of cannabis has given me small quality of life compared to the seven years of never ending hell Xanax dropped me in. Don't be affrwid of setbacks if you're six years out, you can't go any further back than you already are. This combined with walking four miles per night has given me very good windows. The cannabis is only taken in a window (twice a week) as it can have negative effects in a wave

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@lorraine59 Withdrawal is uncomfortable. I did so cold turkey and without a doctor’s help. There are no words to describe the horror of that experience. All I know is when doing so it is important to have support. As I read about so many deciding to wean off of benzodiazepines and other psych meds I can empathize. Doing so gradually is the best. There is a lot of good information that has been shared. I had no idea how scary it is for many. The way I did was not wise. Fear kept me from reaching out. I am sorry your doctor is not being supportive. Must have you feeling alone. As @gailb pointed out-advocate for yourself even if it means being assertive. Doctors that are not willing to help are not worth wasting time with. Some can be total jerks.
I can say that the world is brighter on the other side.

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@aarniek

After almost 6 years off my benzo ,I am actually getting worse and if I didn't have friend on other benzo sites,I would not believe it's still protracted benzo withdrawal! My muscles are so tight It takes all I have too get to the bathroom and my head pressure along with the severe tinnitus is maddening, What I want to know is has anyone found any food or drink that helps even a tiny bit or any OTC medicine that helps? If I had the ability to get to the Mayo Clinic in Florida I would go there but I don't think there is anything they could do as I have seen 4 neurologists and the best one did was tell me to go back on klonipin for 30 days and my symptoms would abate and I could stop it after 30 days !( did not do that) and my normal neurologist has done thousand of dollars worth of MRI's and MRA's plus blood tests,all normal and has scheduled a 72 hour EEG and wil comment on the results next month!

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Have you tried CBD oil without THC? I am wondering about trying this myself. 6 months out from C/T on Klonopin for over 3 years and kindled with Ativan for 10 years prior. My legs are still aching and tight to the point of difficulty standing/walking.

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@jennykl

Have you tried CBD oil without THC? I am wondering about trying this myself. 6 months out from C/T on Klonopin for over 3 years and kindled with Ativan for 10 years prior. My legs are still aching and tight to the point of difficulty standing/walking.

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Hi, @jennykl – welcome to Mayo Clinic Connect. Apologies for the delayed reply to your post. I can imagine having aching and tight legs to the point of having difficulty standing and walking is really challenging.

I noted you are considering CBD oil without THC, and I'm hoping that members like @cdcc @parus @gailb may have some thoughts for you.

You might also want to check out this discussion on CBD oil and depression/anxiety https://connect.mayoclinic.org/discussion/cbd-oil-and-depression-anxiety.

Just wanted to clarify: are you still taking the clonazepam (Klonopin) and lorazepam (Ativan) currently, or have you tapered off of these medications?

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@lisalucier

Hi, @jennykl – welcome to Mayo Clinic Connect. Apologies for the delayed reply to your post. I can imagine having aching and tight legs to the point of having difficulty standing and walking is really challenging.

I noted you are considering CBD oil without THC, and I'm hoping that members like @cdcc @parus @gailb may have some thoughts for you.

You might also want to check out this discussion on CBD oil and depression/anxiety https://connect.mayoclinic.org/discussion/cbd-oil-and-depression-anxiety.

Just wanted to clarify: are you still taking the clonazepam (Klonopin) and lorazepam (Ativan) currently, or have you tapered off of these medications?

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Thank you for getting back to me! I am off the Benzos (5 months now) but am still on 40 mg of Prozac. I think CBD will be useful after I have healed but lots of damage in my nervous system from long term use. With my pain being concentrated in leg and lower back, I am unable to exercise past light stretching. This is nothing compared to Acute but it is preventing me from functioning most of the time. Any suggestions?

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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.

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@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.

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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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@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.

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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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@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.

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@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

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@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

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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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