Migraines

[Lynzyc]

Hi,

I was diagnosed at 41 back in 2019 with ET Jak 2 and my levels have always been fairly normal at 580.

Before I was diagnosed I started with migraines, never had them before and they have persisted ever since which are quite debilitating. When seeing the specialist he advised he didn't think that the migraines were due to my condition which I found fairly odd as when researching the symptoms of ET headaches were at the top of the list for a lot of people.

My question is, and I hope I don't sound silly for asking, but can my migraines be a part of the ET with my levels being at 580 and all other blood results normal or would someone suffer with them if there levels were much higher?

Hope someone can help.

Lyndsay

[Leveret20]

Before diagnosis (ET) I had increasingly frequent migraine auras that did not develop into headaches. The GP prescribed low dose (10mg) propranolol, which stopped them entirely. I don't know whether they were connected with the ET or not. Difficult to work that out.

[Mu55]

hi I’m on propranolol to morning and night 40 mg and my auras have been few and far between since

I have E T 50 % and P V 50% I’m on hydroxycarbamide 1500 mg daily

[Crossefield]

Absolutely, i only had raised platelets and had migraine aurus without the headaches for up to ten years before diagnosis in 2019. At the time my platelets were around 600 and I suffered an auru almost weekly. I still have them and they can knock the stuffing out of me for a few days. But since starting daily aspirin they only happen every 2 to 3 months.

[hunter5582]

The simple answer is that yes, migraines can be an issue for people with ET and PLT at 580. This is a microvascular symptom that has more to do with how the blood cells behave than how many of them there are. Medications that reduce the risk of microvascular symptoms can resolve the migraines. I am sure you will hear from others who have had this experience.

The more complex answer is that we can have co-occurring conditions. Migraines can occur for reasons unrelated to the MPN. This happened to me. I develop acephalgic visual migraines as the result of a brain surgery to remove a tumor. treatment for this type of migraine is different than when the issue is a MPN microvascular issue. I consulted with a neurologist-migraine specialist who prescribed a CGRP inhibitor for PRN use since the migraines were not frequent. This medication stops the migraines within one hour whenever they occur.

Suggest that you consult with a MPN Specialist about your question. Some hematologists are not aware of the different ways that MPNs can manifest. MPN expert input will best inform your decision making. Here is a list. mpnforum.com/tsr-the-list/

Wishing you all the best.

[Threelions]

I used to suffer from regular (weekly) severe migraines prior to diagnosis. Aura based followed by pain & feeling lousy for the following 24 hrs. Although I got used to them they were awful.

Following diagnosis of ETJ2+ I have been on Peg for about 3-4 years now. Absolutely no migraines (touch wood) since going on peg.

All the best. Migraines are so annoying, they really do interfere with daily life so I hope you find a solution.

[Lynzyc]

Thank you all so much for your replies, it really helps. Have a lovely Easter x

[ETinNYC]

Hi LynzycYes, migraines and ET are definitely linked. If you're in the low risk category and don't require any specific medications, ask your team about taking a baby aspirin. Many folks have significant improvement in their headaches on that alone. The migraines don't necessarily have to be correlated to a high platelet count. Meaning just because you're not that much above 'normal' doesn't mean you're less likely to get them than someone with platelets of 900k. Speak to your care team! Happy Easter from NYC.

[Lynzyc in reply to ETinNYC]

Hi, thank you for your response. I'm seeing my specialist next week so hopefully we can get this sorted. I'm already taking baby aspirin but unfortunately it doesn't help. I'm currently using Sumatriptan which does help to a point. Happy Easter to you too.