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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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.

REPLY

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.

REPLY

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 🙂

REPLY

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

REPLY

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.

REPLY
@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.

Jump to this post

@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.

REPLY

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.

REPLY

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

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

What is e t ?

Jump to this post

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.

REPLY
Please sign in or register to post a reply.