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Anyone out there on Guanfacine?
Went to Mayo Clinic to get answers. Internal MD I saw said I have long term Covid. I had a mild case in Nov '21, but a few weeks later the nightmare began. With each and every passing month, new terrible symptoms appear. As of today, I am in such agonizing pain throughout my entire body. It's a combo of stabbing-like pain and burning pain. Every morning I awaken to trembling in my chest and then the pain kicks in. I can only sleep (if at all for 3-4 hrs. Tried everything.
My immune system is attacking itself. I even developed a chalazion on lower eyelid, formed and abscess, 2 surgeries, came back again, and dry eye issues now. I also have ear pain and buzzing. I never had eye issues or anything prior and was so very healthy, like all of us.
Covid has taken the life I once knew away.
The Doc I saw prescribed Guanfacine. He said, Covid causes inflammation everywhere to include the brain and puts us in "flight or fight mode."
The BIGGEST problem I'm having is I have tried for weeks to get a hold of the Doctor I with a question on the Rx. I sent several messages through Mayo mychart, called again and again (9 times) to please have him call me and he will not and just deserted me.
I was told by his assistants he's "too busy." I can't believe a human being, especially a Doctor I drove 4.5 hrs to see and spend $$$$ doesn't have the decency to care enough and call me.
I don't know where to turn and can't stop crying in pain and mysery.
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Have you been able to resolve your insomnia from guanfacine? I have the same issue; insomnia kicks in after 3 hours of sleep every night- and being a lifelong narcoleptic, that says A LOT. As miserable and unhealthy as insomnia is, I don’t want to stop taking guanfacine because it has been a miracle drug, zapping my brain fog, depression, anxiety, AND hypertension in one fell swoop. . I have been doing acupuncture twice weekly and that has helped immensely, but it is getting expensive, time-consuming, and isn’t exactly fun. Any insight?
Are you taking the extended release form of guanfacine? That’s the only thing I can think of because I read that it’s less likely to cause side effects.
I’ve considered trying it if I can persuade my doctor to prescribe it, but I’m worried about the side effects. I appreciate you sharing your experience though I’m sorry you’re experiencing the insomnia!
This may sound crazy, but ask your doctor to have your Thyroid Levels checked. I didn’t know at the time I had Covid that I also had Hashimoto’s and Hypothyroidism. My body began swelling up and I was gaining weight by the day, getting hives on my body and had horrible brain fog. My daughter suggested to me that I have my Thyroid Levels checked, as we are a family of bad Thyroids. To my and my doctors surprise, my levels were off the charts! I was diagnosed with Hashimoto’s and Hypothyroidism for which I now take Synthroid. My Hashimoto’s levels were almost at 600 and they’re suppose to be at 0! No wonder I wasn’t feeling well! Well, now almost 2 years later, I have lost the body inflammation and hives and do feel better. I also lost my taste and smell with Covid in 2022 and it hasn’t come back yet…I’m still working on that. I do wish you all the best in trying to figure all this out, but start with the Thyroid levels, you may also be surprised!
Hi Austin - know it's been a bit but wondering if you're still using the alpha-stim or TruVaga today to help with your symptoms / what has been the most helpful. Thinking of trying these out but wanted to hear what the longer-term impact has been. Thank you!
Thanks for asking this question. I’m also super curious about the Truvaga, as I have POTS and this seems more clear than using a TENS unit.