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I've had ME for years. I've been on and off different anti depressants and in June after coming off two of them my anxiety hit a high and I was put on Mirtazipine, it made me worse and I was put on Zopiclone and Diazepam and am trying to taper off Zopiclone and the anti depressant. My use of diazepam has increased (I've been told by gp and mental health team to use it up to 16mg a day but I use about 10mg). I'm TERRIFIED about the consequences of all this. I'm housebound. I feel so sick with these meds and suffering badly with withdrawals so have to use the diazepam but my fear is when I have to come off it, the withdrawals and whether I'll end up with severe ME as I'm suffering extra muscle weakness if I don't take the diazepam.
Has anyone been through this and come out the other side?!
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best of luck
Thanks for your response.
Well done on working through the withdrawals and finding some relative normality.
I'm most worried about being on this damn benzo (diazepam).
Help is non existent isn't it. I'm in the same boat. Gp advises me but as for practical help and support, zero!
Take it one very very small at a time and you might be surprised at how you will improve. It is very,very small steps over a long period of time. I ran before I could even put one foot in front of the other which is why previous attempts failed. In the end I followed my GP advice and it worked
Hi wknight, could you please share the things you did to improve and feel better? I agree that "getting" better falls so much on the patient, and I've had success before at getting better. Recently, I'm just having a harder time and experiencing less good days the older I get. Please share what you are doing. Thanks, KPD
Yes, I have. I found that my anxiety went to almost zero after I got off a drug in the same category as Diazepam. This drug was Ativan, or Lorazapam. Turns out, the Ativan was actually increasing my anxiety! It was a terrible experience getting off it, but I'm so grateful not to have the debilitating anxiety I had on the drug.
Thanks Jackie. Can you tell me how you got off it? I know it's a case of a very slow taper. How much were you on and how long did it take etc?
How did you cope coming off it with having ME?
Ativan is a horrible drug. I can't believe they are still using it. So please you got off it x
I suffer with ME, suffer with clinical depression and I'm a mental health nurse.
Diazepam is an anti anxiety medication, it shouldn't have anything to do with muscle weakness and isn't a long term solution, you should come off it very very slowly. I take citalopram which really helps.
Thanks Paul. I want off it now but I'm tapering Zopiclone and escitalopram at the moment. I then have to get off Mirtazipine as tried a higher dose and that's how I ended up on diazepam as the effects were so bad.
Diazepam is a muscle relaxant. Maybe Nikki is misinterpreting this as a muscle weakness ?
Not easy being a nurse with ME is it paul 😕. I had to ill health retirement from paediatrics age 39yrs. 21 years ago. And the awful irony being a mental health nurse having clinical depression . Take care.
So sorry to hear you are struggling like this. I cannot tolerate much in the way of drugs. I take heart meds and they don't mix well with some drugs. I can't tolerate pain medication. I rather have the continual pain than the horrible side effects of drugs.
I have been on gabapentin for years. At one point I was put on pregabalin. it was horrendous. I slowly weaned off it but it still felt like I was going crazy and dying. And the gabapentin suppressed my bone marrow . I had low platelets and white cell count. On just a low dose for a while now but does nothing for pain. I do find it affects my mood for the better though. When I have come off it I feel really anxious. I still feel anxiety but it is more due to the death of my mother two years ago. I had to make complaints that are still going on. The stress as we all know makes our ME worse though.
I hope you can find some relief soon. I can imagine how terrified you are feeling. It sounds like you have been subjected to a lot changes with these drugs. Take care x
So sorry you are having such a difficult time coming off the the drugs, Nikki.
Do feel like any of these drugs have helped? I'm not against using some medications if they are helpful. I would follow the recommendations of you doctor with this. Taper off the drugs slowly and use only the ones that are helping.
I'm not familiar with all the drugs you are taking, but Xanax along with a trycylcic anti-depressant called Doxepin help me with sleep and anxiety. I take a very low dosage of both, though. Some people would not agree with this, but when you have CFS/ME, you need to take and do what helps you. There is not easy solution or cure for this very debilitating disease. Some benefit from exercise, while others homebound. Every case is so different!
Follow you doctor's instructions on this, Nikki. Good luck, nikki! KPD
I don't feel any of the meds are helping me. The Escitalopram basically stopped working last year but my gp has been just adding things in for over a year with only a worsening of my mental and physical health and now I'm in a worse place than ever.
The only relief I feel is the Mirtazipine which gives me a couple of hours sleep. The diazepam makes me sleep too but I can't stand being on it. My memory and mood have been worse in them but without them I'm a nervous wreck!
I completely agree that if you've found a regime that works, then that's very good. I'm pleased you have that.
Thank you for sharing and supporting. Nikki
It sounds like the only medication that is really helping you is the Mirtazipine, so if I were you, I would keep taking that and start trying to get off the other drugs, but please do it under the supervision of your doctor. Withdrawal can be so dangerous if not done the right way. If the benzo is helping for your anxiety and your doctor is not opposed to you taking it, why do you want to get off of it. I think it can be a wonderful drug for people who have generalized anxiety disorders. People don't understand how debilitating anxiety can be... Not to mention that you have CFS/ME in addition to it. I would try to cut back on the amount your taking, since you can become resistant to it, but if it is also helping, I wouldn't stop it completely. Hope this helps some.
Good luck to you. Please keep us posted. KPD
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