Severe Headache

[MaryELWoods]

It's s almost 4 months since I was diagnosed with PV. I'm 55 and on Pegasys 90 mcg weekly.

Yesterday I was having a rather normal day except for more than usual red hot flashes....my hands, neck, and face were bright red and tingly for most of the afternoon. Then at 4pm I was hit with the most massive headache I have ever experienced. The only other symptom was an extremely dry mouth. I drank 8 large glasses of water and started to feel better. But I was seriously frightened by the headache and its sudden onset. And I'd been drinking water all day and had at least 60oz by this time.

Can anyone shed some light on this for me? Today I am still quite flushed in the face, very thirsty, and so very tired.

I thought maybe I was having a stroke. Don't want to sound hysterical but I was really frightened.

Thanks.

Mary

[Jacqx17]

Hi Mary,

Although I'm not on Hydroxy, I was diagnosed the beginning of this year with PV, I'm 52, and although I've suffered with the fatigue side of it before and after diagnosis, it wasn't until a few months ago my hot episodes turned into raging hot red sweats, with tingly fingers and toes, and nausea, followed by how I'd describe it as a 'crushing' headache.

I told my haematologist and now I'm having tests for thyroid, hormone levels, and blood pressure.

But she said she expected those tests to come back ok and that the sweats etc are most likely another symptom of PV.

I'm not saying that it's the same for you but just wanted to reassure you that there is another PV person experiencing similar things to you.

I know it's hard, as I am a worrier too, (never was before PV tho), but try not to worry.

You should also talk to your haematologist if your worried, only they can truly put your mind to rest.

Best wishes

Jacqui 😊

[Poppy6060 in reply to Jacqx17]

Hi Mary

Sorry you not feeling well I am just 57 with PV and like you I have been on pegasys 45 mg for two months I have suffered bad headach for years and like you they can start so suddenly and the hot flushes and sweats make me feel unwell but must say they dont seem so bad since starting Pegasys it seems it can all be part of the PV but best to tell your doctor do you get many side effects after injection I get bad pain in legs for a couple days hope you feel better soon best wishes Poppy

[MaryELWoods in reply to Poppy6060]

Thanks, Poppy. It's so hard to know what's the PV, what is from the Pegasys, or something else altogether.

[MaryELWoods in reply to Jacqx17]

Thanks, Jacqui. It helps to know you've had similar symptoms.

[Aime]

Hi Mary, sorry to hear you are having frightening symptoms. I always think it is best to get anything new checked out because it’s easy to blame our MPN for every symptom and if you’re like me, you’ll only worry until you get an answer.

It’s probably nothing but best to be safe.

Kindest regards Aime.xx😺😺

[MaryELWoods]

Thanks, Aime; you're right. Sadly, I trust this group more than my oncologist

[mualiz]

Hi Mary,

I am early 50's with PV and on Peg. for a few years now. I also suffered with day and night sweats ( I had to change clothes and sheets) but now they are few and far between. I think mine may have been hormonal/menopausal and the PV and/or meds exacerbated the symptoms. I have also taken many years to work out what RBC level is normal for me. I am on the low end of the recommended numbers but as long as I stay below .38 I feel well. We are all very different and what works for one person may not for another.

I have found over the time I have been diagnosed that other medical issues can feel more extreme. If I go through a period of stress or just get a regular cold or flu virus it can hit really hard. The biggest help without a doubt is the amazing on line community here and other mpn forums.

I have made it my mission to be as well educated as possible regarding MPN's and this has prevented stress overtaking. Of course there are always times that anxiety gremlin rears its ugly head.

Take care of you and speak with your specialist. The medical teams are awesome.

x

[MaryELWoods in reply to mualiz]

Thank you! I'm still learning about PV.

[EleanorPV]

Hi Mary,

I’m on pegasys. Age 50. I get severe headaches when my haematocrit is 43.8 and above. After 24 hours my BP and heart rate also rise to a dangerous level. We are all different and even nearly 2 years after diagnosis, I still struggle with the knowledge, I know more than my local a&e department.

If you are concerned, it’s always best to have the pain checked out.

Eleanor