head aches

[Faith33]

Hi there, I keep getting headaches. They appear in different parts of my head. It feels a bit like a vice as if my head is under pressure. My platelets are about 750. I take aspirin and nothing else. I am just wondering if this is something I should worry about? I have only started getting headaches since my platelets went up. Otherwise, headaches were rare. Can anyone add some light to this problem.?

[Mostew]

I describe sensation as like a clamp. Yes I’m sure it’s the high platelets as I’ve never had headaches before. It started occasionally but is now consistent. That’s why reluctantly , I feel it’s time for me to take HU as alternatives (of which I’ve tried many under expert supervision)

Also get light head headed ...

NEARLY ready to take BUT as soon as I feel not a clamped , get up bright and early etc I put it off .....

xx

[Faith33 in reply to Mostew]

Thanks, Mostew, It is strangely comforting to hear your reply. I am also getting close to accepting the medication. Fatigue is another symptom I am hoping the meds will deal with. The downside that I am concerned about is that many people on here seem to have so many symptoms and ARE taking the meds!

[Mostew in reply to Faith33]

That’s just how I feel . Rock and a hard place !. That’s why I keep putting it off.

I had a day a few days ago when my head was so odd I shouldn’t have driven . Kept bumping into things while walking as well . So said I’ll take meds next day. ( not that day as I’d had herbs that aren’t comparable .)

THEN woke up fine ( apart from my now usual clamped head ) good energy so didn’t want to . Feel fine today as well .

I be spoken to heamo.

nurse who assured me most people don’t get symptoms ..... BUT .

How is your skin colour . Toes and hands ?

Generally I’m lucky . Don’t get tired unless do you much ....

I guess we can try and stop taking meds if it’s worse taking than not.

It’s silly to wait for a stroke or something . The nurse said then I would have to take meds !!!

Tonight’s the night .!!! The. I’ve had tablets sitting there unopened for about 9 months ... still in date

[Faith33 in reply to Mostew]

Thinking about you. How are you doing?

[Cja1956]

When I was first diagnosed with ET Jak 2 in 2008, it was because I had been getting terrible headaches for months that wouldn’t go away even with Tylenol or ibuprofen. I went to my gp and he did some bloodwork and my platelets were about 600,000. He sent me to a hematologist who did a BMB. My hematologist put me on hydroxy and soon after my headaches disappeared. Its very rare now that I get a headache. So I think that is something Iwould look into, if I were you.

[Tingle20]

It seems like before I was diagnosed ET Jak+ I had a headache for a year straight. Terrible headaches that would not go away. My GP sent me to neurology and I then was treated for migraines before they realized my platelets were in the 700s. I started seeing a hematologist. I was prescribed baby aspirin and Hydrea 500mg every day. Within a month headaches were less and now I seldom have one. Platelets are now 520. I think the Hydrea helped. I seldom think about symptoms now. I feel more normal than I have in years.

[Wyebird]

I think your heamo definitely needs to know about your headaches. Maybe medication is needed.

[Faith33]

Thanks to everyone for replying. I feel reassured. I will tell the heamo tomorrow. Headaches gone today! I know how you feel Mostew 😁 Good Luck Mostew, keep me posted will you.

[CalrType1]

I’m Calr Type 1 ET. I had those a lot headaches too when platelets are above 500. I now take Hydroxyurea and baby aspirin and platelets below 500. I still get headaches occasionally, but not as often or severe.

[Faith33]

I just thought I would post an update on headaches. They mysteriously disappeared. A week ago I had a blood test and platelets down 51 points. Which is great news! Thanks everyone for your supportive comments and advice. I will mention them to my haemo when I have my next appointment.