Hi all....
I would like to hear from anyone that has any advice on headaches.... I was diagnosed in April this year with E/T jak2 + at the moment I am only on aspirin, I’m awaiting to hear from St Thomas (been referred)
I have had a constant headache now for 16 weeks.... some days it’s worse than others but it’s there from the minute I wake up to the time I go to bed 😩 x
So sorry you’re suffering from constant headaches - I’m sure it must be getting you down. Frequently waking up with a headache and finding it hard to get rid of (painkillers would just take the edge off it really and it would always come back) was one of the reasons I consulted a doctor and found out I had PV with elevated platelets. Others symptoms included pains in my lower legs when I went walking and ocular migraines. The symptoms quickly disappeared as soon as I started with venesections and daily aspirin. Now that my blood counts are at normal levels after almost a year and a half on Pegasys I rarely have a headache.i don’t know how high your platelets are but it’s possible that cytoreductive treatment could alleviate this distressing symptom. Definitely something to discuss further with your hematologist. I hope you find some relief soon.
Hi I was diagnosed with et about 8 months ago and I am only taking aspirin I was getting headaches everyday but a natropath friend suggested I start taking moringa capsules which is a high antioxidant so I take 2 a day and I have only had a headache every few weeks so I think is helping a lot :))
Careful. Antioxidants can bind and get rid of your meds. They should be taken at a time when your meds have already worked. Ie. I take Anagrelid. It has a half life Olof 1.3 hours therefore I wait 3.5 hours to do my antioxidants! 🙂
Hi, drink LOTS of water, cooling /menthol gels rubbed in up the back of your neck into your hair to the base of your skull and temples. This will sooth the tense muscles while the water will help the blood flow.
Before I got diagnosed in 2008 with ET, I was also getting headaches constantly. Nothing was helping so I went to my gp and he did bloodwork and that’s how I found out about my high platelets. When my hematologist put me on hydroxy, my headaches went away.
But the last year, they have come back. I wake up every morning with one, but usually once I get up and walk around, I feel better. I take Jakafi now, as well, since I have progressed to PV.
Hi Dazakella!
I had headaches as long as my thrombos were over 650. I make sure I eat a super clean diet of whole foods and for headache or any pain at all, I drink golden milk to not add more chemical burden to my body.
wellnessmama.com/223/turmer...
I use rice milk and leave out the cayenne pepper. Black pepper must be used, else he curcuma is not activated.
All the best
Hi
I have had a headache for 16 weeks... it doesn’t matter what my platelets are.... they have been 522.... 621.... and now 489 (over the 16 weeks) and my headache has stayed the same. It’s taken it’s toll today and I have broken down... I have been trying so hard not too... x
Wow! That is huge. Your thrombos are not bad at all. Have you checked your neck and shoulders at an orthopaedic? I had this when I got a slipped disc (pinched nerve) in my neck. Horrendous. Other causes are food intolerances (but not really so severe). I remember this starting and then continuing and getting worse day by day in my case. 25 yrs ago. It took years of meds that didn’t fix anything. Only good Physio and discipline over 6 months with exercises fixed it. From experience, I know nothing else. Some friends have migraines that go on for weeks. If they take the right med, right when it starts they are ok. If they wait 20” it’s too late for them to stop it. I will pray you’ll find the right doctor to get to the bottom of this! All the best for a solution. Anag.
I have been told it doesn’t matter about how high the number are.... someone that has got extremely high platelets might not have any symptoms but my numbers you can.... it’s all to do with the individual... I have a feeling they may do a bmb on me.
My headache started when I was at my resus training at work... I got a severe migraine... and I have been left with this headache as I said for 16 weeks. X
Of course we are all different. I have had 5 TIAs at 550 up to 909. I know this sounds strange, but Was there any exposure to chemicals during the resuc course or on that day? It could be that you might have done something to your shoulders or neck. I have done a CPR course and it is taxing on your shoulders and neck. I do pray for freedom from this. All the best, Anag
Hi anag
No chemicals at all.... the migraine came before I started the compressions 😩
Wow. I had years of headaches after a massive car accident, when I was 18, just 2 weeks before university started. Horrific. The meds to stop the pain do a job on you gut and brain and immune system in the long run. Have you had an MRI. The best one to see as much as possible is the 3 Tesla machine and doing a scan that shows the veins and arteries. I just did this because I have a weird artery branching out behind my left ear. This may show something. I’m not sure how you can get a doctor to refer you in England. I’m in Austria. Our health system is still hanging in there.
Did you move in the near past? Was there work done on the pipes in your home or on the street that may have contaminated your water? Have they built smart meters into your home? Are there wifi’s that aren’t turned off at night in your home or neighbours’ homes that get you? Is there a radio clock with alarm that receives signals digitally near you or your bed? These are deadly!
If no one can find anything, the easiest and cheapest thing to do is get rid of all GMOs, packaged and processed foods and avoid any chemicals possible in your home and cosmetics. Also glyphosate in grains and some vegetables and fruit has terrible consequences including neurodamage, leaky gut and cancer. I have gotten rid of all that. It’s more work to clean and cook, but my family is so much healthier! We sleep better, our blood tests are better, we look better and our minds are clear. I get no more headaches, eczema, bloating, fatty liver is cleaned up. I really want to help and I hope you don’t mind me brainstorming. All the above changes have to be doable and not cause too much stress.
I answered to Lepee above:
Careful. Antioxidants can bind and get rid of your meds. They should be taken at a time when your meds have already worked. Ie. I take Anagrelid. It has a half life of 1.3 hours therefore I wait 3.5 hours to do my antioxidants! 🙂
I hope you get better. Anag
Headaches are a symptom of E/T.... it’s a big symptom.
I work in the imaging department (Ct/mri) I have had a ct head and apparently this come back clear.
I don’t drink tap water always bottles. I don’t eat rubbish food and eat every fruit and veg going.
Sounds like you’re doing a lot for your health. Your headaches is huge. I have friends with mighty migraines that last up to a week. I do hope yours will finally go away. Have a lovely week-end, Dazakella! Anag
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