Lightheaded with ET

Posted by arti4 @arti4, Apr 2, 2023

Hi everyone. I’m 70, diagnosed with ET in June, 2022, and JAK 2 positive. I’m only taking 2 low-dose aspirin a day because my platelets are only in the 560 range. The symptom I’m mostly having is “lightheadedness” (not sure that’s a word!). Yesterday I went for a walk and it was unusually warm. I started feeling that way and went home and took my blood pressure. I run low, but it was very low, and my pulse was very high (120-140). It remained like that most of the evening. Today I’m back to normal and not feeling lightheaded. Is anyone else having these symptoms? Is this an ET thing or something unrelated?

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Drop your doctor(s) a note, see what they say. Lightheadedness (love that word also) or dizziness is associated with numerous physical issues, they need to help you get a handle on it. Best of luck.

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Allergy season makes me room-spinning-around dizzy. Benadryl works.

Beyond that, I have ET fatigue at mild to moderate levels most days that can make me feel lightheaded and lethargic. I drink a lot of coffee, do daily yoga, and have learned to use my "peak time, between 11 a.m. and 3 p.m. to get things done.

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Hi @artie
The spinning feeling / lightheadedness is tough, esp without knowing why. Many mornings I wake up as if I've got a hangover, but I didn't drink anything the night before. Funny thing, I do feel better in the late afternoons or evenings if I have a few ounces of wine, maybe works as a vasodilator? It helps with what I used to call stress-headaches. Can't want to tell my Hematologist tomorrow! Good luck to us both 🙂

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@sregiani Thanks! I agree. A nice red wine is therapeutic on many levels.😊

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I know the feeling, definitely light headed and always wake up with a headache sometimes like a horrendous hangover and no not been drinking either, used to love a glass of wine. I can drink a lunchtime but I think because I am more hydrated in the day. I do try to drink a glass of water before I go to bed which does help the headaches, I notice headache worse if I forget. We obviously get dehydrated in the night. I also drink lemon water throughout the day which really helps with hydration.

Good luck with the haematologist.

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@lynn22

I know the feeling, definitely light headed and always wake up with a headache sometimes like a horrendous hangover and no not been drinking either, used to love a glass of wine. I can drink a lunchtime but I think because I am more hydrated in the day. I do try to drink a glass of water before I go to bed which does help the headaches, I notice headache worse if I forget. We obviously get dehydrated in the night. I also drink lemon water throughout the day which really helps with hydration.

Good luck with the haematologist.

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@lynn22, yes! Morning headaches and a hungover feeling. I’ve suffered with them for years-long before the ET diagnosis. I thought perhaps they were “ hypnic. headaches.” The solution that has helped me is to have a cup of half-decaf coffee sometime before going to bed. Strangely, it doesn’t keep me up and usually prevents the a.m. headache.

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Thank you for that I will certainly try it. I don’t normally drink coffee in the evening but anything worth trying. Yes I have suffered with headaches most of my life and no one knew why until I had the diagnosis.

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I also have trouble with being lightheaded.
I have et with Jake mutation
I'm taking hydrea

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What is e t ?

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In reply to @1942marilyne "What is e t ?" + (show)
@1942marilyne

What is e t ?

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Essential Thrombocytosis. Basically, it's an excess of platelets in our blood. Some of us make too many -or our bone marrow puts our immature platelets- and for some of us, our livers don't filter out old platelets efficiently.

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