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Zolpidem/Stress/MG/Symptoms in general.
Anyone here on this stuff? Ambiem. I just cannot sleep without it, but during the day feel awful. 10mg,(tied the 12.5 slow release stuff and thats not advised for MG patients plus again nightmares). I have taken all the others plus anxiety pills which just make it worse. They tell me you have to sleep. Agreed, and yet it makes me completely gaga during the day. I also have, as others, a bipap machine due to sleep apnoea and yet this year been getting strange smells(Parosmia/phantosmia) basically a burning smell that actually does not exist and now think that the nasal masks I wear have gradually caused a sinus issue. Seeing an ENT/Sleep guy on Thursday. Would say I’m starting to get some MG symptoms back, not a crisis(exacerbation, I think they call it) but vision changes, muscle weakness, incredible tiredness, lack of concentration, occasional slurring or stuttering when talking too much, short of breath and now with this strange smell nonsense, severe headaches. Unfortunately now back on a small dose of Preds, 2.5 to 5mg.(higher dose messed my eyes up) Still taking the mestinon when needed and the Mycophenolate which for whatever reason my neuro lady insists I still take 1000mg a day as I have been doing for 29 months now. I did cut it out for a while or rather halved the dose and noticed that my edema in the left ankle went down.
I cannot get rid of a tingling in hands and feet, but mostly hands,(dishidrotic ecxema or similar, albeit much better SP?) but I do know my quality of life has been reduced greatly, fogginess and lack of clarity, plus making silly errors, and I am trying hard to reduce my intake of Zolpidem to max 7.5mg but if I now get 4 hours of sleep a night Im lucky, yet I have read, one just has to taper of this stuff as addictive. Can anyone offer any assistance here? As just lying there, hour after hour is bad as well. Tried the lot. CBD, does not work. Other herbal stuff and melatonin and if I take too much of that get nasty nightmares. New blood work just done and WBC up to nearly 17 which I haven’t seen this high for at least 2 years, awaiting a mass of other tests)
Sorry rant over…..yet I tend to forget I have MG. My Neurologist seems to think that tiredness is not a main factor of MG which I do disagree there as last year early on, it rendered me incapable for a few weeks, and that I perhaps have other issues..she might be right) and I have asked for another round of IVIG which appeared to help last year, but not forthcoming at present.
arrgh..peace and wellness to all.
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