Thunderclap headaches

[SindyJ]

Hi, has anyone ever suffered repeated daily thunderclap headaches associated with their ET?

[TZJ1]

I'm a migraine sufferer and have been since I was young. I have discovered that when my platelets are over 1000 I get increased migraines. I've gone on to some low dosage migraine medication and I've gone from having pretty much daily headaches to far less. Having said that I've just had 3 days of bad headaches and extremely low energy.

[Amethist]

Hi SindyJ, I used to get frequent headaches, most days, sometimes bad enough to have to go and lie down for an hour or two . Went to gp for a blood test. As well as discovering high platelets ( around 1400 at the time) also discovered I was low in vit B12. On taking high dose B12 supplements daily, my headaches quickly went away and have never come back, that was 5 yrs ago. I still take B12 regularly.

Platelets have pretty much stayed the same , some fluctuations but still high. Other than 1/2 an aspirin every few days I don’t take anything for my ET.

So yes to headaches but definitely not associated with ET.

Hope you find the answer to yours.

[Wyebird]

No I don’t but my platelets at their highest were 800. Now they Hoover around 400. Anything over 450 and I’m awful. Maybe your platelets are too high for you

[hunter5582]

The causes of the headaches can be complex and at times multi-factorial. Some people with ET do find they are worse when the platelet levels are higher. Whether this a correlation or causal issue may not be clear. Consultation with a MPN Specialist working together with a neurologist that specializes in migraine would help to sort this out. There are a variety of interventions depending on the underlying cause. They range from cytoreduction to increased anti-platelet therapy to migraine medications (CGRP inhibitors, triptans, etc.)

I experience occasional acephalgic visual migraines after having had a brain surgery. I have the increased inflammation that accompanies PV. I also have magnesium and Vit B/folate deficiencies. I have had success with reducing the inflammation with diet and curcumin. The nutritional deficiencies are addressed with titrated doses of supplements. Breakthrough migraine episode are treated with Ubrelvy, a CGRP inhibitor. This approach has been quite successful for me.

I would highly recommend the CGRP inhibitors to anyone experiencing migraine based on my personal experience as well as the literature. They are very effective and have very few risks/side effects. there are two types, a monthly injection to prevent and an oral form for breakthrough episodes. Truly an amazing advance in migraine treatment. Here is some information on Ubrelvy. If you are interested, you can also look up the injectables like Ajovy and Emgality. online.epocrates.com/drugs/...

Hope you find relief soon.

[SindyJ in reply to hunter5582]

Thanks for the info, Hunter. Very much appreciated 😀

[Ryna-Ally]

Hello SindyJ Good Day !

I need help on now you manage to get rid or control of your daily headaches.

I Can’t tolerate this headaches anymore. Almost every day and now getting more worst .

Please advise

[EPguy]

I do get the instant bang headaches since my Dx. Usually brief (~5-10sec) and goes away. It's different from the sinus/migraines that I can get. My blood numbers are fine.

I've not looked into fixes for it since it's a minor issue in my case vs my other issues.