ET SWAYING FEELING

[shiela23]

does anyone experiencing swaying ????

[IrishHiker]

When going up the stairs but I am also dealing with shortness of breath so they may be related. Also when getting up too quickly if I have been gardening or cleaning litter boxes. I have been checked for orthostatic hypotension and it is not that. I just pretty much know when it will happen so prepare myself for it. Life goes on!

[Uzza]

I have done...with a full-blooded vertigo with projection vomiting.

[Rockstone]

Yes I feel unsteady on my feet some days and take care if I get up off a chair. Did wonder if might be to do with ear wax . I am taking 1000 hydroxy daily so may be that, we just dont know do we?

[Ccsintx]

Yes I do I usually feel like it is when my blood numbers are going up

I am Jak2 ET/PV. I am calling for blood work today

[givingITMybest]

Yes, I do at times feel like I sway when making a turn, that kind of thing. I now see a cancer support doctor who tested my balance which turns out needed work. Prior to my ET diagnosis in 2019 I had excellent balance easily doing the tree pose in yoga. Now I'm doing some PT for gait and balance. Before diagnosis when my platelet count was 1,362,000 I had extreme vertigo feeling like I was being pulled to the ground always to the left...strange.That went away once i was treated. All tests by a specialist showed all else was fine.

Good luck, move slowly and carefully as you adjust.

[shiela23 in reply to givingITMybest]

How did you treat your vertigo???

[givingITMybest in reply to shiela23]

Well, The serious stuff stopped once I was taking aspirin and HU. But now over two years with platelets in normal range I've experienced this swaying as you described. I'm just being aware, careful and doing the Physical therapy exercises for gait and balance. If available you might think about getting an assessment for your gait and balance. Good luck.

[azaelea]

Hi Shiela. Yes I get that too and also when turning quickly loose balance. Have to be careful not to get up from chair too quickly too. I’m ET JAK2 +.