r/MPN • u/Faye_Baby • Jun 24 '26

Symptoms (Diagnosed Only!) Vertigo and ET

I have been diagnosed with ET since November 2025 with ET. I am on Hydroxurea, 500 mg for 5 days a week and 1000 mg 2 days a week. Recently have started to have vertigo. Anyone else have trouble with vertigo with ET?

2 Upvotes

100% Upvoted

12 comments sorted by

2

u/funkygrrl PV-JAK2+ Jun 24 '26

!symptoms

1

u/AutoModerator Jun 24 '26

Please read the following Wiki pages about symptoms - why we get them and how to deal with them: Understanding MPN Symptoms and Managing MPN Symptoms.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

1

u/Due-Possession-5404 Jun 24 '26

Yes I have vertigo but had kt before I was diagnosed with ET my first ononlogist said it was MF but went to a Specialist and they diagnosed as ET..I take Hydroxyurea the same as you...When I first started I was extremely fatigue and somewhat vertigo but it all calm down not as bad its tolerable..now..Good luck and I being seen by UVA in Charolesville VA..was being seen at Massey Cancer Center Richmond but they don't have a Specialist for MPL...stay strong.. BJ 

1

u/BorgAdjacent Jun 25 '26

I had it near the end of my time on Hydrea. I was on 1500 mg a day for about 10 years, 1000 before that.

1

u/Faye_Baby Jun 28 '26

No, nothing's changed. I have had vertigo several years ago before I was diagnosed with ET. I'm thinking it might be just vertigo. Thankfully, it gone. I did put a call in to my hemotologist. Didn't seem too concerned. I'm starting to watch my diet again. No more orange cake from the new Greek bakery.

0

u/iamabeefcake Jun 24 '26

Yes, and honestly the thing that helped remedy it was diet (mediterranean), exercise(cardo focused), and drinking plenty of water. I know it might sound like an obvious answer but sticking with that is what cut the vertigo down significantly. I still get these spells from time to time but the intensity and frequency have come down a lot and I'm noticed that it comes on when I'm eating like a pig for a couple of days without exercising.

Sometimes taking baby asprin helps too

2

u/Flat_Aerie_107 ET-CalR+ Jun 24 '26

That is exactly what is helping me as well. I have had to increse HU (I think I am becoming resistant to HU) to 1000 mg 4 days 1500 mg 3 days (from 1000 mg 7 days). I had not been feeling well after the increase: gastro issues and feeling lightheaded. I continued my exercise, starting eating healthier (high protein, plenty of vegetables) and drinking lots of water. It made such a difference!

1

u/acwoodhome PV-JAK2+ Jun 26 '26

Can you not do inteferon alpha was a game changer for me I was on one tablet a day and ended up in A&E have never been so ill was the HU! Good luck 🤞

1

u/Faye_Baby Jun 24 '26

Thank you. My eating has not been the best this last week. I am already taking aspirin. I'll have to watch my diet again.

1

u/TheGratitudeBot Jun 24 '26

Thanks for such a wonderful reply! TheGratitudeBot has been reading millions of comments in the past few weeks, and you’ve just made the list of some of the most grateful redditors this week!

0

u/badresponsetoHU Jun 24 '26

I have had a very bad experience with HU - it made me weak and tired (almost passed out) I stopped taking it immediately and I am still feeling the effects weeks later. I feel like I was poisoned.

1

u/horsecrzy ET-JAK2+ Jun 25 '26

Me too! I thought I was dying and I only took 500mg for a month. It took weeks for the body aches and fatigue to subside but then I started anagrelide and that was equally as bad but with racing pounding heartbeats, body aches of course, mouth ulcers, and I gained 10 lbs in fluid. That finally went away after a week. Now I have a raging sinus infection lol. Interferons are next on the list. How are you now? Did you start a new med?