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Do you know a solution for those health issues?

Hey there,
life with SMA has never been easy, but since 2 years I´m having severe problems and need your advice...
It all started with my first Covid Vaccination (Astra Zeneca), but I dont know if this was really the trigger. After the Vaccination I had four months of pure hell: had to throw up several times a day, could not sleep, had the feeling of having a permanent fever (though the temperature was normal) and worst of all I had the feeling of being narcotized or high. Beside that I also had extremly strong Panic attacks and almost could not leave my bed because I was even to weak for sitting (for the first time in my life with SMA Type 1B).
Nowadays almost all of those problems are gone except once or twice per month and I don´t know what I can do to get rid of that repeating nightmare. I am really scared and also very depressive because all those symptoms come back to me every second week and stay for days.
I am 26 years old and never had such problems before, even if life has never been easy...
Do you maybe know somebody who is having the same problems but has found a solution?
Especially the sleeping problems are destroying me. This week alone I had to take Melatonin in 4 nights in a row just to fall asleep...
Kind regards,
John

  1. John, thank you so much for being here and for sharing this with our community. It sounds really scary and uncomfortable and I'm sorry to hear this is continuing to happen to you. I have to say that I've never experienced something like this, but I'm going to tag some of our patient leaders in hopes that one of them can shed a bit more light on this from a personal perspective of living with SMA. I really hope you can gain some relief soon. Thinking of you, Abby (Team member).

    1. Hi im so sorry you have had to go through that. I know for myself coming out of the “norm” of 2020 was hard. I hope doctors and other professionals have been able to help you. I know for me I was struggling a lot with anxiety after Covid. I had to completely cut caffeine for a season (about a year) I paid close attention to what I was eating and drinking and that seemed to help me reset

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