From about last week, I've been affected by dizzy spells. Very un- nerving. Never experienced this previously even after a "hard day's night." I'm ET (CALR+).
Suggestions welcome. Next appointment with hospital Consultant not until end of next month.
I would make an emergency appointment with your GP. This may or equally, may not be connected to your MPN.
Dizziness can have several causes, and all we can do on this forum is speculate. You need professional input!
Thanks mhos61
You’re welcome.
It’s definitely an unnerving experience; I’ve had benign positional vertigo in the past, my husband has recently had severe episodes of labyrinthitis, which has to be further investigated, so I really do understand how you feel.
You need to have it checked out!
As noted by mhos61, dizziness can happen for a number of reasons, including the ET, medications, ear infections, TIAs, and more. Since it is a change in status, it is something to be checked sooner rather than later. It may be something quite minor and easily dealt with but better safe than sorry.
Thank you Hunter. Will do.
I agree with the above posts - not something to ignore. I'll just add that a year after my pv diagnosis I started experiencing dizziness - mostly in the morning - occasionally very debilitating. My doctor suggested drinking more water in the morning so I drink 12 ounces before I walk my dog and another 12 ounces with breakfast. That nearly eliminated the dizzy spells. Hopefully yours will be as easy to fix. Best wishes
Need to keep well hydrated,prob is spending 1/2 the night on the loo! I had a brain scan when I was concerned about dizzy spells……..I was fine ,just trying to do too much,we do need to rest even tho we don’t want to.Good Luck…….I am still alive & kickig with M F now & shock horror I am 84 think I am 24!!Keep strong & positive ,the main thing.
Thanks a lot. I’m 81 and think I’m still 18. Maybe all these pre Xmas parties are the cause!
Excellent - I'm 78 and have the same expectations - still hard to adjust to AGE. But I agree - gotta keep moving forward and get exercise every day. Mine is usually lots of walking and bike rides since it's gotten too cold to swim or kayak right now. Otherwise it's working outside - splitting wood, carrying 50# bags of corn for the ducks, etc. No complaints - I have no desire to slow down - although sometimes my body has other ideas and I have to take a break.
I do taper off the water intake as the afternoon progresses and have only a small glass of water with dinner and nothing after. Sounds like you have a great attitude - that's wonderful.
Wow you do use some energy! We bred competition horses in UK,brought my older brood mares here to Fr with us ,so I too used energy all thru P V ….not so much energy now since M F raised it’s head.You are right not to drink afternoons ,but I love my Irish Whiskey ,just a little not a bottle full! with lemonade ,then I need water thru dinner & taking various meds so I can’t stop late afternoon.Great to chat with older M P Ners,seems so many younger people on now ,I don’t know anyone else in my area of S W Fr,I am very well cared for tho.
Best to you😍
yes we have 2 German Shepherd dogs ,well exercised & training ,they guard us well & keep us going ,I do tire tho rather more quickly than even a year ago.We oldies must keep active !
Best to you 😀
Mine is a golden cocker spaniel. He’s 8 years old.
Let us know the outcome and hugs
Feel better! Dizziness is awful. I've had a few bad spells that seem to have been set off by stress.
hello - I had a period of dizzy spells and they ended up doing another bone marrow biopsy (despite not being that sure it was related). It turned out I was suffering from vestibular migraine and better sleep was the answer. Which is to say - it might not be MPN related. Good luck
There are some great answers above and I’ve been enjoying the comments from the “oldies”. My dad is 81 and literally never stops moving with gym and walking miles daily and is therefore the strongest & fittest oldie I know! Keep on moving guys! Re dizziness, the water intake is so important, I feel grim and very dizzy if I don’t drink at least 2 ltrs a day. I was in Turkey in Oct and felt horrible even though I was drinking that amount. A local I spoke to told me to up it to 4ltrs until I felt better. I thought I’d never be able to drink that amount but I did it and I only had to do it once because it made all the difference. I also experience (periodically) a very strange dizziness which makes me feel as though the earth is rising up (I see it moving up towards me!) and I’m falling backwards. It happens very quickly and only once, it is not something that continues on. Someone else on here once described it as well so I’m assuming that it is linked to either MPN or my medication (Hydroxy). Keep well and let us know how you get on xx
Yes the dizziness I experienced with P V & Hydrea made me feel I was going backwards!One day checking my mares from the top of a bank that went down to field ,I had a dizzy backward session ,ended up fallin down the bank into a tree 1/2 way down!!Been working in my studio for an expo & was tired…..anyway broken bones in various places…so yes it can be dangerous .I am better on Rux tho M F now & very careful🤣
My dizziness isn't bad enough to mention, but I probably don't drink enough. I suspect it's more to do with the pregabalin I take mainly for getting and staying asleep at night. I've never actually fallen over. I should do more exercise, but I've just started two weekly classes (they are gentle and very effective). Whatever exercise I do, I have to drive somewhere first, and most of the time I'm either doing chores or I'm on the laptop,
Thanks a lot
Sorry I can't be of any help!
Hi. I hope you get an appointment to get checked soon. I have PV and experience dizziness now and again. Sometimes I'm just sitting still and it will feel like my head and body have been pushed in different directions and that I'm falling over (which I'm not). I notice that this gets worse when I need more sleep for some reason. That might be that I need more sleep than I usually have, not just that I'm not sleeping well. Don't know if that info helps you but thought I'd mention. Good luck x
I think sleep has a lot to do with it, and we all need more, not less.
I’ve had intermittent dizziness near passing out over last few months propping up against the wall and having to lie down on one occasion
I told my MPN specialist he told me to contact the GP and put this in his consultation letter
I contacted the GP absolutely nothing of them !! Useless so I’ve changed GP and there the same to be honest !
Likely NOT your ET. I have had the worst balance giddiness & vertigo in my life recently. Started overnight September I could not get up for a week room spinning . 2 months on giddy & balance bad. However there is a very bad virus around. I had no symptoms but ended in hospital . Inner ear infection caused by a virus. Many of my friends have had it. Unfortunately no quick fix as fluid in ear has to settle. I had CT scan & ENT visit. Definitely not my MPN caused it. Hope this helps 👌
lots of good feedback - I’ll add mine.
I have ET, diagnosed 2022. I started experiencing dizzy spells this past year and my GP ran me through all types of tests ( brain scan, CT, cardiologist, Echo, etc). Nothing was found to be concern. My cardiologist suggested a daily electrolyte, and lots of H2O! As many have noted, this does help. The Electrolytes help to reduce nighttime bathroom visits a bit.
My dizzy spells reduced a bit, but they were mostly reduced when I began Jakafi treatment a few months ago. Almost no dizzy spells now. I had to educate my GP that dizzy spells can be /are symptoms from ET.
I believe we are all educators to the care teams that support us. I wish more were knowledgeable about MPNs. But they are not. We can change that for the future and so stay positive. Try hydration - electrolytes - it may be a helpful. Most important check in with hemotologist team.
Best of luck.
Dizzy/full head
I'm new to all this 😁
Should HRT be taken if you have ET?
Starting Pegasys 
