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Suspected akathesia


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Hi

 

I have been on clonazepam for 10 or 11 years. I took it for what seemed to be symptoms of akathesia (unconfirmed as doctors didn’t know what was wrong with me and I hadn’t heard of it back then). However after reducing the akathesia-like symptoms have come back.

 

My main dose was 3mg. I did a very slow taper from 3mg to 1mg over 3 years. I did it very slowly because if I didn’t want the inner restlessness to return.

 

I was doing fine but then for some reason once I hit 1mg the akathesia came back. It may be unconnected I don’t know.

 

I have now stopped the taper and actually increased to 1.25mg which I really didn’t want to do but I have severe ME and POTS, and cannot cope with the akathesia on top of it. My ME requires total rest (mostly bedbound). I can’t rest one second with this.

 

Any thoughts on if this is akathesia and the best thing for me to do?

 

Akathesia like symptoms:

 

I am experiencing intense internal agitation/restlessness.

 

The feeling is most centred in my chest and is different from anxiety.

 

It comes with a sensation that my chest is burning up from the inside.

 

I have an intense need to stretch my chest at all times, day and night. If I stop stretching for any reason my chest boils over and I feel like peeling my skin off.

 

I have an intense need to move all the time but I am too ill to. So I squirm and fidget and shake and twitch. I am normally mostly confined to bed but I can’t stay in one place for long with this so will switch from room to room.

 

The agitation only stops after my body is totally worn out plus have taken clonazepam. I then get a brief window where I crash and can’t move from bed, then it returns. This has turned into a cycle of one day and night with this internal restlessness, one day without but in a crash (ME crash).

 

I cannot sleep when I have it.

 

I have no appetite when experiencing this symptom so I am losing weight.

 

When attempting to sleep with this symptom my body struggles with lying still, and so my body starts jerking and twitching involuntarily. This feels like little electric jolts.

 

At times I am experiencing an abnormal gait - I sort of stoop forwards a lot and stumble and need support off my dad to walk.

 

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I know it's been a long time since you had the original condition but can you remember feeling then like you are now, are the symptoms similar? 
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Yes it’s the same. Except it may have been more severe in general before,

 

Main difference is my ME and POTS hadn’t progressed as far back then so I handled it differently. I used to exercise - walking, jogging, yoga, exercise videos, or just jump up and down - until I crashed. Then I would be confined to bed for a while whilst ME symptoms dominated, until the internal restlessness grew, then I would have to exercise again.

 

My ME is too severe for me to do that now. When my internal agitation was really bad the other day I asked dad to help me walk round the garden. Interestingly I had a different gait. My balance was totally forward and I was bending heavily forward and so unbalanced I wouldn’t have stayed standing without my dad supporting me. This is not normal for me.

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I don't know what to think, your preexisting condition and these particular benzodiazepine withdrawal symptoms are too similar, I can't differentiate between what may be your original condition breaking through while reducing your dose or if they're intense symptoms.  I suspect its both but I don't know what can be done about it.  Your medical situation is complicated and I feel unqualified to offer suggestions, does your doctor understand benzodiazepine withdrawal?

 

I wish more members would offer their insight into your situation.

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No my doctor just said take Nytol but that didn’t help at all. If anything it made things worse.
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My GP and my ME consultant manage my care.

 

They both know I’m tapering. Neither have helped me with it, nobody ever has. I decided to start tapering on my own as I was worried about long term effects but had no help and nobody educated me on long term effects I just educated myself.

 

I also told my ME consultant last time I talked to him about these akathesia-like symptoms. He said he didn’t know. I’m due to talk to him again soon. He does think I should try SSRIs for a different issue but I’m scared to try them because akathesia can be a side effect. I wonder if this agitated and restless state is something I am prone to and could be made worse by SSRIs. I’ve been given Citralopram but not taken it.

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How was your quality of life while taking Clonazepam, was the only reason you decided to get off of it because you were worried about long term effects?
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Pretty much, yes.

 

Also I wasn’t sure which side effects I had. Listed side effects were mostly the same as my ME symptoms. Or what I assumed were my ME symptoms. I did want to know whether some of what I suffered was a result of the clonazepam.

 

However what I am going through now, returning to these akathesia like symptoms. It was my worst fear. Being bedbound or housebound with ME my whole adult life I can cope with. Even a day with these symptoms are unbearable.

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Are you considering going back up to the 3 mg dose?  If you did it might take awhile to stabilize but it might be worth a try, I hate to see you like this. 
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I have gone up to 1.25mg with no relief.

 

I am talking to my ME consultant on Wednesday and I hope he can recommend a different med to get rid of this but I think he’ll say he doesn’t know or put it down to anxiety. It’s not anxiety though.

 

I don’t want to increase clonazepam any further but if I cannot find any other relief I may have to try it.

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I feel slightly better today and yesterday but it could be because I started using an acupressure mat! Random I know but my mum had one and I randomly found it reduced this akathesia type sensation. Doesn’t get rid of it, just reduces it if I keep using it a few times a day.

 

Will have to see if I continue to feel a bit better or not!

 

I also have a video consultation with my consultant tomorrow. I’m hoping he comes up with something and isn’t dismissive.

 

Thanks for all your replies by the way. Appreciate it.

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I hope you can have a productive discussion with your consultant tomorrow and thanks for the info about the acupressure mat, I'll pass it along as a possible relief for akathisia, I'm assuming that's what it helped with or was it your anxiety?

 

I'm happy to talk to you, I wish I could be more helpful.

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