My tremors (post covid) continue. I take all the recommended supplements and have tried 3 different epilepsy meds. I just cannot tolerate them, they make me feel like a stumbling drunk all day! The more anxious I am, the worse the tremors are.
I’ve lost 2/3 of my thick healthy hair, so I’m shaking pretty much all the time. Hair loss is an expected result of Covid. Pegasys can also cause hair loss. I have never experienced that prior to Covid.
Mahaloz for letting me vent today. I wish you all well!
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blu3yedblonde
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Sorry to hear that. Hopefully things will take a turn for the better for you. Stress can keep adding up when your down and tough to get away from. Best of luck to better days soon!
Sorry to hear about the additional struggles. Like an MPN is not enough! I have only been on Keppra (levetiracetam) for 30 days following a brain surgery. It made me feel like my brain was wrapped in a blanket. I could never be fully awake. Had to triple my caffeine intake just to be reasonably awake. That was not so good for the tachycardia. I was glad to get off it. Lyrica (taken for joint pain) was not as bad, but did cause a bothersome loss of concentration to the point I found it somewhat dangerous. Meds that decrease cortical stimulation do unfortunately have consequences. I hope the long-COVID abets so you can get off the anti-seizure meds. Meanwhile, all the best for a full recovery from COVID and good control of the MPN.
Oh no! Feeling for you I developed tremors recently, also much worse with anxiety. Been diagnosed as being essential tremor, difficult to manage some things as hands shaking a lot. Hope you find something that helps xx
You’re right, the tremors are a lot worse when the anxiety increases. I’ve had it bad enough that I couldn’t feed myself 😮 and full head to toe tremors, where I was thinking I’d have a seizure. Do you take anything for the tremors?
Well, for essential tremor a short term aide is alcohol, actually listed as useful if anxious for an event etc, beta blockers/gabapentin also possibly helpful. Essential tremor is mainly hands/arms, head/neck (can affect speech), not so often also legs/feet.I’m not a drinker, but did try the alcohol last week when it was bad and I was stammering terribly on FaceTime with a friend….it did work, after a while.
Am seeing the doctor next week and would like if possible something that I can use when it impacts, rather than a full time medication. I can‘feel’ it inside as a sensation a lot of the time, but it doesn’t always externalise, though it does more than half the time. Typing on my phone….grrrr….keep missing the letter I’m aiming for…
Mine came on suddenly, after my hip replacement operation in April.
Yours sounds a lot worse than mine, my thoughts go out to you! xx
I’ve found that the supplements I started when I was diagnosed myelofibrosis JAK2+ were also helpful with my long Covid.High doses Vit C, Tumeric, C0Q10, magnesium, zinc, a multi vitamin, Vit E, D3, Zyrtec.
Labs recently indicated I need Vit B12, and although I take over the counter, it’s not absorbed as well, so now I have prescription B12. It’s all definitely a handful 😝
A supplement to investigate for your tremors is thiamine in the form of TTFD and sulbutiamine as they are efficient in passing through the blood/brain and offer high absorption levels than forms found in multi vitamins. Anti thiamine factors can interfere with thiamine levels. This link contains some of them. A deficiency of thiamine can affect absorption in your digestive system because the vagus nerve connecting the brain to the gut is dependent on it. The sibo link will clarify the role of thiamine in the gut.
Yes Minu68 the vagus nerve connects to the sphincter muscles. Remember, magnesium is needed for thiamine activation. Magnesium also keeps platelets from sticking together. Take time to search on "nothing boring about boron" as it offers many benefits including increasing magnesium absorption and bone building.
I’ve got a magnesium spray and thiamine now, pharmacist says magnesium is absorbed better through the skin. So am starting to take it now, will see if it helps! Gp said it’s fine for me to take, checked as I had an appointment anyway. Have been prescribed beta blockers to take when its bad, and if that doesn’t help he’s going to refer me to neurologist
That's why you feel better when you swim or soak in the ocean from the magnesium. This link lists causes of magnesium loss that unfortunately goes unnoticed and underscores the need. I'm glad you checked with your GP. Some magnesium sprays can cause itching or irritation so adding Aloe or distilled water can offer relief. Like soaking in Epsom salts for twenty minutes leaving the spray on for the same amount of time is adequate.
Thank you! I definitely have to push my “team” to get help, just like I had to educate my oncologist & pharmacist for treating my MF with Pegasys. I believe there are only 2 of us MF patients in the entire state, and we have no MPN specialists.
I studied that 3 yrs ago. I had several acquaintances that did SCT. I watched them all suffer endlessly, and 3 died before the 1 year. I’m 66 now, and I have chosen to enjoy whatever quality of life I have left. CV19 has been hell, but nothing like what my friends have been through.I must point out that I have 4 children and 8 grandchildren. I’m not putting any of them through any SCT ordeal, I’d rather spend time with them.
blu3yedblonde , please accept my condolences for the loss of your acquaintances. I mentioned it because I didn't know if you were aware of it as my wife only learned about SCT at age 70, 21 years after being diagnosed with ET and was told at that time she was too old for the procedure and now six years later is totally transfusion dependent. There are other treatments in trials and I hope one of them can be more than palliative. While SCT carries risks it was a choice she was never offered before it was too late for her.
Seventy doesn’t seem too old for consideration for a SCT. I’m sure I’ve read of people having SCT in this age group-unless your wife has additional co-morbities. You could always ask for a second opinion too.
mhos61 she is going this week for that conversation. Her ET was the result of being in a lab with benzene and toluene. Be aware of products containing them. She is the only member still alive.
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