Vertigo with ET

[shiela23]

Does anyone has vertigo severe headache im swaying all day and diagnosed ET…. Give some advice been taking betahistine for vertigo.

[Cja1956]

When I first got diagnosed with ET Jak 2, it was because of a visit to a GP because I was having constant headaches for months with no relief. He referred me to a hematologist and I was put on hydroxyurea right away and within a few months the headaches were gone. I’ve never been diagnosed with vertigo, but I have in the past had bouts of lightheadedness and dizziness. I found out that I was anemic at that point. This disease affects people in many ways. And many times the doctors are not educated on the symptoms that we experience. Maybe it’s time to have some more bloodwork done. Or to seek out an mpn specialist.

[bordeauxgirl]

Hello Sheila, I have PV on Hydroxycarbamide and a lot more beside, but recently have had really bad bouts of Vertigo and had to attend hospital , they gave me the same meds as you have, I can now recognise when I am about to have an attack, (had one last night) it went within 3/4 of an hour. It is horrible. I have also been diagnosed with Femoral Arteritis, so ask your docs to check for this condition as it could be related and can be very dangerous. Good Luck and Good Health.

[hunter5582]

Sorry to hear about the problems with vertigo and headache. these can certainly be related to the ET, but can occur for other reasons too. It is important to get a comprehensive review of what is going on by the appropriate specialists. This would include a MPN Specialist (not a regular hematologist), a neurologist, and possibly an otorhinolaryngologist.

While this may well be a microvascular symptom related to the ET, you do not want to assume that it what it is. There are interventions that can help, but you need a proper diagnosis of the underlying cause.

hope you get answers soon.

[ETphone_home]

Hi Sheila,

I have ET CALR. I had a period of getting vertigo about a year ago. When I would bend over, or get up from lying down, or even sometimes when I was just lying down, my head would be spinning.

It went on for about 3 months and then it just went away and I haven't had it since. At the time I just made extra sure I was drinking lots and lots of water. I normally do but sometimes maybe not as much as I think I am, especially if my routine is a bit disrupted.

E

[Notdiagnosed in reply to ETphone_home]

Hi etphonehomeWhat you are describing sounds like Benign Postitional Vertigo.

I had it years ago with a vertical nystagmus too. It was at a time when my blood pressure (I am hypertensive) was also very high and I had tachycardia and palpation. I was put on betherhistine. But I paid private to see a neurologist and it was the best 100 quid ever spent. I started 2 weeks after giving birth and then 3 years later I went to neurology.

He performed the epily maneuver on Mr. Said it was ear rocks. Possible head injury although not had one.

I had to sleep sitting up for 3 days after and thankfully I got it less often and eventually it calmed completely.

I have had it again just lately and nystagmus but my bloods are out and I am experiencing a floaty feeling at times now. Don't know if it'd BPV or because of bloods but look up BPV because thar is what yours sounds like . And there is a maneuver to correct it. Again my gp would have just left me on pills forever. They would never watch what happened to my eyes lying down.

In fact vertigo took me to my gp most recent. She told me yo watch her finger lol. I had again wanted to show her when I lay down. She wouldnt listen. You can only diagnose BPV when tilting your head.

[ETphone_home in reply to Notdiagnosed]

That's very interesting, thanks for taking the time to reply. You could be right, it does sound very like it. If it happens again I will try that manoeuvre procedure! Good luck. E

[neela2020]

Yes . The only reason of my MPN PV diagnosis was occasional episodes of Vertigo . After being on hydra and aspirin, not experienced in last 3 years.