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
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).
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 
Hi
, Thank you for sharing what you’ve been going through—this sounds incredibly overwhelming, and it’s clear you’ve been facing so much. It’s especially hard when new symptoms appear out of nowhere and disrupt the balance you’ve worked so hard to maintain. While I can’t say I’ve personally experienced something identical, I do know how life with SMA can throw unexpected challenges our way, and I want you to know you’re not alone in this. The way you’ve described the symptoms—particularly the feeling of being narcotized, the panic attacks, and extreme weakness—sounds both physically and emotionally exhausting. It makes complete sense why this cycle would leave you feeling scared and depressed, especially when you can’t predict when it will strike again. I’m so sorry you’re going through this.
Regarding your sleep struggles, it’s so hard when your body won’t let you rest, especially when melatonin doesn’t fully solve the problem. Have you been able to speak with your doctor about these ongoing issues? It might help to explore whether these symptoms could be lingering side effects, an autoimmune response, or even something unrelated that started around the same time.
This community is here for you, and I hope someone who’s been through something similar might share their experience or insights. In the meantime, know that it’s okay to lean on others, whether it’s friends, family, or even mental health support. You’re dealing with a lot, and it’s okay to take small steps to get through this one day at a time. Sending strength and support your way.
- Jennifer SpinalMuscularAtrophy.net Team Member
