Balance

[Hydrox]

Hi all. I was just wondering if anyone has problems with dizziness and balance. I use to get it occasionally, now it is getting more frequent. I am aged 75, jak2+, on Hydroxy for 11 years. Usually lasts for a couple of hours up to 1 day.

[Staroftheday]

Hi I have been like this also for a couple of weeks am on pegsy x hope you’re okay xx

[Hydrox in reply to Staroftheday]

Just feeling a bit off lately, I had covid 3 weeks ago, it might be something left over from that, hopefully. You keep well too.

[Mostew]

I used to get off balance before starting hydroxicarbamide. Now platelets lower its stopped

Hope you get it sorted ..

[Hydrox in reply to Mostew]

Thank you, my platelet count had gone up last check up. I have done a repeat blood test, awaiting the result. Maybe that is the cause. Will let you know, if I find out.

[Mostew in reply to Hydrox]

As Hunter said could be side effect or ET.

I definitely know I stopped feeling off balance when meds brought platelets down.

Will be interesting to hear what your next blood test reveals.

I fainted before diagnosed. They couldn’t find out why , but I know am convinced it was due to ET….

[Hydrox in reply to Mostew]

Will let you know the result, I am curious myself now, hope its not an upward trend.

[hunter5582]

Dizziness can result from either the ET or as a side effect of the hydroxyurea. It can be tricky to figure out what the cause is. Sometimes the timing of when the symptom began is the only clue.

Since this is a change in symptom pattern it is something to review with your MPN care team. Suggest letting your care know promptly so that you can get the issue addressed in a timely manner.

[Hydrox in reply to hunter5582]

Thank you Hunter for the advice, I am due for a 3 monthly check up shortly, I will address it then with my specialist nurse.

[MetteDenmark]

I experience this when my platelets are high. They have gone down recently and I am now not dizzy at all.

[Hydrox in reply to MetteDenmark]

That's probably the cause as my platelets were higher last blood test, awaiting result of latest test to see if back to normal.

[DottyDaisy]

Oh yes, balance is definitely an issue for me. It's worse when I haven't rested when I know I should have and when I haven't eaten. First discovered I couldn't stay on a bike any more, aged nearly 70, a couple of years after the start of the fatigue and 10 years before diagnosis. Now aged 81 I still have the problem. I can't negotiate steps if I'm carrying anything. Very nasty fall 10 days ago.Diagnosed as ET 4 years ago, now changed to unspecified, and took Peg for 18 months in order to keep platelets down for hip surgery last year. Now no meds since January, but so far have kept platelets under 1000k. Yes I think for me balance is because of high platelets, not meds.

[Hydrox in reply to DottyDaisy]

Thank you for your reply.

[Scrollernut]

Interesting. I’m 80 female same diagnosis and meds. Platelets went down this blood draw (every 3 months) and now that you mentioned it , like a few others, balance does seem to be some better. Didn’t really think about it before because I still am dizzy a little. Umm. Didn’t connect the two.

[Hydrox in reply to Scrollernut]

Same here, I didn't connect them, but on reflection my balance has always been a bit off, sometimes I can't walk in a straight line.

[MaggieSylvie]

Yes, I do, all the time. I'm 78 MDS/MPN, not taking anything except aspirin. However, I do take 150 m Pregabalin at night, and it could be that that is the main cause of my dizziness.

I haven't got ET. I have thrombocytosis and my platelets are not very high, so I'm not sure why it matters or whether this has any bearing on dizziness.

[Hydrox in reply to MaggieSylvie]

A mystery it seems, maybe my blood work next week will shed some light on the dizziness.

[Wyebird]

I really think you need to get your bloods checked via your heamo

Good luck

[Hydrox in reply to Wyebird]

Thank you, my bloods are due next week. Will ask at my appointment about the platelet count and if any connection to the dizziness.

[hunter5582 in reply to Hydrox]

Note that the issue may have more to do with how the blood cells behave than how many of them there are. One of the potential benefits of hydroxy is that it can reduce microvascular symptoms. Your care team can best explain this.

[Hydrox in reply to hunter5582]

Thanks Hunter, I will ask about medication.

[mlkirchoff in reply to Hydrox]

Mine always is. There are three big indicators for me if my platelets are going up: headache, dizziness, and don't bleed readily when cut. If any of those are true, it's always a sign for me.

[Hydrox in reply to mlkirchoff]

I don't usually get headaches, always bleed very heavily, so not indicators for me.

[MaggieSylvie in reply to Wyebird]

I've never thought to mention it to my Haem. It could be anything.

[Wyebird]

really could be related to platelet rise x

[Yoganana1]

Hi,

I do get off balance on the odd I occasion also but not so often since taking Hydroxycarbamide

I also had Covid a few weeks ago now but suffered from balance issues and slight dizziness for a week or so after I had recovered so could maybe something to do with the covid after bite ?

I wish you well and really hope you start to improve soon x

[Hydrox in reply to Yoganana1]

Thanks, I hope so.

[ritaandscooter1]

Very interesting discussion regarding balance as I too have bouts of feeling off balance where I feel like I'm struggling to walk a straight line. I've been on aspirin only for 20 years and am 62 now. My platelets are anywhere from 900-1000. This off balance feeling I've noticed in only the last year. On my long walks I occasionally get this feeling. Interesting to know it could be the high platelets causing it. Thankful for this forum. Kerry

[Hydrox in reply to ritaandscooter1]

From the replies, it seems a fairly common symptom, hope to get an answer next week.

[Hydrox in reply to ritaandscooter1]

Same here, it is not mentioned at check ups or anywhere else.