Do you suffer from quick onset headaches? I ofte... - MPN Voice

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Do you suffer from quick onset headaches? I often get a constant pain in my head that feels like a nail is being pushed in. I have ET.

BlessedWithSix profile image
6 Replies

The headaches started before Hydrea but became worse after on the med for a year.

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BlessedWithSix
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I think anything that gives you pain should be reported to your consultant so that they can do further tests or reassure you that there is nothing to worry about. I wouldn't think anyone would want someone to suffer unnecessary pain. It is always worth checking symptoms out.

At the time I got my diagnosis it was also discovered that I had high blood pressure and the effect of that on me was that I woke up every day with a headache, like a hangover, although I did not drink. Since the problem was addressed and my HBP treated I now have almost no headaches ever. I certainly have never had a localised pain like you describe. It is worth mentioning though that my diagnosis is Polycythaemia Vera and not ET. I hope you get some relief from the pain and the worry it must cause. Good luck and kind regards.

light profile image
light

One of the symptoms for me was a very bad headaches that initially doctors thought that I am having stroke, and even when I was diagnosed with ET last November sudden headaches were present for quite a while, similar to your description of headaches. Only lately I am not experiencing so many headaches. I am feeling well.

BlessedWithSix profile image
BlessedWithSix in reply tolight

I've been tested for everything. Thanks, light, sometimes I feel crazy.

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light in reply toBlessedWithSix

Me too. For me works accepting the things as they are, even though it is rather scary with ET, Hydrox. and unknown, reading other MPD's experiences, but I don't allow to get me and always turn to feeling good, because we really don't know were we are going with all this. I just pray and trust God. Hope that this help. Sending you love and blessings

Michael56 profile image
Michael56

Dear Blessedwithsix, I have PV and have known for 6 years now, I often have the same type of headache you describe, like a nail or thumb pushing into the top of the head, it happens more often as I get closer to my check ups which are about every 2 months now and is related to the blood viscosity increasing, not much you can do about that as I'm told that headaches and blurred vision are quite common with PV as are fatigue and feeling lethargic. I too take hydrox and my health has improved as a result but it is also worth checking your blood pressure too as this can have the same effect.

It does make you question your mortality but life is too short to only think of dying, just try to stay positive and enjoy your life with your friends and family.

Best Wishes to you.

DENMOOR profile image
DENMOOR

Hiya,

Yes I too get that sort of pain in my head! Like a nail just jabbing at your brain for a split second. It can stop me in my tracks! Been on Hydroxycarbomide now for 9 years and drains my body. So tired and really sruggle to get up some days and function. What choice do I have? None. But not happy taking it as risk of leukemia! I am 48 but sometimes feel 98!

Denise

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