Severe ME can be helped by Benzos. I don’t know what to do.

Given this guy is basically dying of ME and it enabled him to interact with his family for first time in years I simply don’t know what to do.

 

It always made me feel better.

 

Given this guy is basically dying of ME and it enabled him to interact with his family for first time in years I simply don’t know what to do.

 

It always made me feel better.

 

 

I think you are probably the best judge of what to do because you know what the drugs do to you .. both good and bad ... whatever you decide I do hope it improves how you feel.

I simply have no idea what to do.

I simply have no idea what to do.

 

I know it is very very difficult to make a decision but you have the most knowledge about yourself and how you react to these drugs and it seems that the medical profession cannot advise you in any way.  I am sorry you are in this terrible position. 

I want the fucking things out of my body but I am concerned they are helping the neuroinflamation from the ME.

I want the fucking things out of my body but I am concerned they are helping the neuroinflamation from the ME.

 

I know, you are between a rock and a hard place right now .. 

I feel you. I have a different illness that is very much helped by benzos (Mal de Debarquement Syndrome), but I don't want to be addicted to this stuff. I'm trying to get off anyway, and doing my best to find some alternative that helps.

rock and a hard place is right 

 

Ajusta -- it always made you feel better?

 

so you never reached tolerance?

 

why did you stop?

 

you've had tests showing neuroinflamation?

 

 

a Psych came to see me - 1st one i ever met - and he said, Re ME/Fibro/hypermobile, etc....  "you'll be worse off of Clon than on it" ...

 

told me to more than quadruple my original dose!  he knew i already reached tolerance in less than 2yrs on low dose.

 

but how the hell would i not reach tolerance again at 4mg Clon, or up and up?

 

he hated Valium -- said it was the worst thing for ME/Fibro/hypermobile, etc...

 

but i know you already said - you would not touch Clon.... WISH i never did....

 

anyway, he seemed to insist Clon was some sort of miracle drug for ME/etc...

 

Psych discharged me on the spot b/c i wouldn't go to 4 Clon .... nor Lyrica, his only alternative.

 

but i do worry, like you -- need something... or so Psych says.... scared the hell out of me.

 

3 months later, got desperate and tried Lyrica... WISH i never did....still horrific after only 4 doses... 4 weeks later.

 

have you tried Lyrica? you never know - might work for you?

 

Given this guy is basically dying of ME and it enabled him to interact with his family for first time in years I simply don’t know what to do.

 

It always made me feel better.

 

 

Do you have any specific details of that guys case? It's not a lot to go off especially if you are making a big choice.

I feel you. I have a different illness that is very much helped by benzos (Mal de Debarquement Syndrome), but I don't want to be addicted to this stuff. I'm trying to get off anyway, and doing my best to find some alternative that helps.

 

Hi sanghapower,

Benzos can actually cause dizziness and disequilibrium that feels like one is on a boat. We have a support group for that and have shared much information there. You might want to check the Dizziness Group in the Support Groups section.

rock and a hard place is right 

 

Ajusta -- it always made you feel better?

 

so you never reached tolerance?

 

why did you stop?

 

you've had tests showing neuroinflamation?

 

 

a Psych came to see me - 1st one i ever met - and he said, Re ME/Fibro/hypermobile, etc....  "you'll be worse off of Clon than on it" ...

 

told me to more than quadruple my original dose!  he knew i already reached tolerance in less than 2yrs on low dose.

 

but how the hell would i not reach tolerance again at 4mg Clon, or up and up?

 

he hated Valium -- said it was the worst thing for ME/Fibro/hypermobile, etc...

 

but i know you already said - you would not touch Clon.... WISH i never did....

 

anyway, he seemed to insist Clon was some sort of miracle drug for ME/etc...

 

Psych discharged me on the spot b/c i wouldn't go to 4 Clon .... nor Lyrica, his only alternative.

 

but i do worry, like you -- need something... or so Psych says.... scared the hell out of me.

 

3 months later, got desperate and tried Lyrica... WISH i never did....still horrific after only 4 doses... 4 weeks later.

 

have you tried Lyrica? you never know - might work for you?

 

 

I was getting interdose WD but was not aware that was what it was until tried to get off.

 

Decided to stop as got diagnosed with hypermobility and believe it has been keeping some muscles weak that need to be able to be strong - esp at top of neck.

 

Also had stopped all other drugs and thought stopping was the right thing to do but not sure now esp as noe getting constant migraines with auras which I had prior to ME and which have not had for two decades while on the diazepam.

 

I know a couple of people with ME on Clonazepam who could not get off and have decided to stay on and now by Memantine online to offset interdose withdrawal symptoms.

 

Are you able to ask the psych you saw why he thinks that Benzos help ME?

Given this guy is basically dying of ME and it enabled him to interact with his family for first time in years I simply don’t know what to do.

 

It always made me feel better.

 

 

Do you have any specific details of that guys case? It's not a lot to go off especially if you are making a big choice.

 

If you google Whitney Defoe ME CFS you will see more about him. He is very ill. Basically dying of ME.