I have been on Hydroxycarbamide since I was diagnosed with ET Jak2+ last October. My platelets were measured at a healthy 314 two weeks ago and overall things are good.
Week before last I had a 3 day headache, paracetamol didn't touch it. I am on day 2 of another one, tried paracetamol again, no luck. I am not dehydrated and nothing else has altered. I did mention this at my consultant appointment last week and he said it's quite common but didn't suggest anything to help.
Has anyone else found something that works?
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Mica11
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Good that the platelet levels are so admirable though, glad that the Hydroxy is able to control those for you. Sorry that you are having the headaches though and for such a long duration. I used to get them prior to having daily low dose aspirin, but rarely have them now (My headaches were usually 18 - 24 hours, occasionally nearly 2 days, never 3). I'm guessing that as your platelet levels are so exemplary then you may not be having aspirin? But I did wonder if this may still help? Hopefully someone will be able to give you some useful advice and you can get this sorted. Frustrating that your consultant had nothing to suggest.
Thank you Peter, I am on my daily aspirin as well as my 2x 500 Hydroxy and nothing has changed there since my 2nd month after diagnosis.
I don't know if it's coincidence but I was massaging some home made CBD balm into overused muscles last night, due to scraping moss out of the lockblock and had it on my hands when I found myself massaging my temples and my forehead, about 15 mins later the headache was almost gone. I have awakened with the headache again, so have massaged a little into my temples, let's see if it was the balm that helped?
My consultant did seem to be time poor at my last meeting but I did have a bit of a list of questions for him.
-- I'm on Pegasys (3 years - ET Jak 2 neg.) and I have the same headaches. It is very possibly caused by lack of oxygene (like when smoking a lot). Lack of oxygene is caused by the waste products created in the process of killing the blood platelets.
You could try with lots of whole milk and boosting your oxygene intake. Breathing deeply. It helps me, at least.
Have a nice day-- Hope the rains aren't too bad at your place !!
Hi Yarrowleaf and thank you for your reply. That sounds like it's a possible cause, I do have problems with breathlessness sometimes and find myself breathing deeply to try to compensate. I do walk my big hairy beast every day in the lovely fresh air we have up here. Also go to Pilates and circuit training ( that makes me breathe!)
We have had non stop sunshine up here for 2 weeks now, loads of factor 50 splashing around and the long sleeves annoy me. Still, NE Scotland having 3 weeks of sun in a row must be some kind of record!
Hi Mica11. I have just come out of 20 months of headaches thanks to a condition called primary cough headache ( no direct link to my ET and jak2+, but both my haem and I think that there is probably a dotted line/link). I found fortnightly massages helped manage my headaches as well as tapping into the services of a good physiotherapist when things got on top of me. Even though my headaches have returned to normal mode (hallelujah!!!) I still maintain a massage and visit to my physio on a 8 week cycle
Hi Mark, thank you for your message. I have never heard of primary cough headache. Odd you should mention this though as I had a dry cough since New Year for over 3.5 months, so bad it sometimes made me sick and kept me awake. My GP gave me a steroid nasal spray that kicked in after 3 weeks and that stopped it. He seemed to think it was to do with my sinuses. I did suffer sinus headaches too.
I used to go for monthly massages just because I enjoyed them but I thought massage was not recommended when you take Hydroxy and aspirin and so I reluctantly gave them up. Maybe not the deep tissue massage I used to have but a more gentle version? I wouldn't mind getting back to them one bit!
Got Pilates at lunchtime if I can bear to move my head and not feel sick....scrub that, I am going, I will be just fine and I will feel better. Positive thinking, the way to go! Haha!
Hi Mica11. I hadn't heard about primary cough headache (PCH) either before it hit me (it's a headache that worsens when you laugh,cough,sneeze, strain to lift something etc) and the only thing hat helped me manage it was regular deep tissue massages (including some Bowen techniques) particularly focussing on my shoulders and neck as PCH causes secondary muscle spasms in your neck and shoulders. I've not heard about not having massages when being on Hydrea and like you I am on 1000mg per day as well as aspirin. I will continue to have massages as I see it as one of my main ways of managing my wellness.
Sounds quite debilitating, this PCH thing. I'd be in real trouble, I love a good laugh.
I think I may question the 'no massage' thing at my next hospital visit. I was under the impression it was to do with the risk of a bleed more due to the aspirin, I may be wrong.
Hi Mica, sounds as if your platelets are doing well. I had awful headaches with Hydroxy, which went on for weeks and weeks, even after giving it up. But have to say, countless others are absolutely fine with Hydroxy and a lot been taking it for many years, as well. I am taking Turmeric (600 mg) a day, also Pom (pomegranate) juice - which is definitely bringing platelets down slowly. Interested re your trying the CBD balm....I did try that too...but a bit inconclusive. Your hairy beast walks and other exercise in that beautiful air all sound the best medicine of all! Kind regards, Tinkerbell
Hi Tinkerbell - you mentioned what sounded like an alternative to Hydroxyruea that has helped lower platelets? Would you kind sharing what exactly you are taking and / or where you learned of it? I’d like to look into it. I have ET, Jak2 + platelets around 600, sometimes higher /lower. I was just diagnosed last Jan and I take 2 baby aspirin a day. My head aches are not as bad since the aspirin.. only when I’m perhaps a little dehydrated - hughe improvement when I added more water.
I have regular aches in lower legs - really bothersome at times and sometimes numbness in my fingers and face /jawline.
I’d love to do what ever I can to lower my plarlets and hopefully improve the leg aches..
Hi Jenn, delighted to respond to you. A friend with MF recommended I try using pure pomegranate juice (no sugar) and particularly the one called 'POM'. For the first time ever, my platelets have started to go down, without any 'formal drugs', like hydroxy, etc. The same happened to her, so we are convinced this is what is happening. For my general health and a natural blood thinner, am using 600 mg of a good organic Turmeric capsule (understand that just using the powder used for cooking is not sufficient). Like you, am ET Jak positive. My platelets are much higher than yours as have been steadily mounting for a year....but last time checked, had gone down considerably. Not due to see haematologist for another month and will be interesting to hear her comments. She is very open to my trying this, as I did not get on with any of the prescribed drugs. But know many out there are totally fine with them. Best wishes to you and do keep us posted how you are doing. Incidentally, the friend who recommended Pom did say that it took a couple of months to take effect....mine seemed to work after just 6 weeks! Tinkerbell
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