Headaches : Hello all.... so I was diagnosed with... - MPN Voice

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Headaches

Hello all....

so I was diagnosed with E/T jak 2 + in April this year.... I have had a constant headache since 14th February.... I am under professor Harrison who arranged for me to have a mri head.... the good news is that that’s come back completely clear so I have now been referred to a neurologist as she feels if my headache was associated with my E/T it would have been managed with everyday painkillers but unfortunately mine has been constant as I said since 14th February.... it’s like a pressure headache at the top of my head and around my temples. 4 months with a headache is really getting me down now 😥 has anyone else has this symptom?

Kelly x

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Hi,poor you!Yes but they last maybe 1 or up to 3 days not as long as yours .Please,don't forget that stress and neck and shoulder problems also can give you headaches or intensify a normal head ache. It can become a negative spiral. Hope you get help soon!

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When I first got diagnosed with ET 11 years ago, it was because I had been having unrelenting headaches for months. I went to my primary care doctor who did some bloodwork. My platelets were at 600,000. He referred me to a hematologist who did a bmb and found out I was ET Jak2 positive. He put me on hu and anagrelide and my headaches went away. I hope you find some relief soon.

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Did your headaches ease with everyday painkillers? They are saying of my headache was related to my E/T it would be managed with paracetamol?

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I'm in the US and I never heard of that painkiller. However, I can tell you that back then, regular painkillers, like tylenol and ibuprofen, did not help and that's why I went to my gp to figure out why my headaches wouldn't go away.

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Tylenol is just a brand name. It contains paracetamol also known as acetaminophen

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Thanks, but I am aware that Tylenol is acetaminophen. Now I know it’s a synonym for the other. Either way, it doesn’t help my headaches. Once in a while I take ibuprofen and it does help.

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Same here

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Hello there, I have ET and jak 2+. In the past I have suffered with headaches that ordinary pain killers didn't control. They felt like a belt was being tightened round my head. I was prescribed stronger pain killers and found placing something cool on my forehead worked. I do sympathise with you as they can be debilitating, hope you find relief soon.

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I was diagnosed with PV (with elevated platelets) in October 2017. On of the reasons I went for a blood test was because I was constantly waking up in the morning with a headache. Normal painkillers would sometimes alleviate the pain but it never really went away. As soon as I started treatment (venesections and daily aspirin initially) the headaches disappeared. I hope you find relief soon.

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Hi kelly, I suffered with really bad headaches earlier this year especially in mornings. Come to the conclusion they are linked to the Et as platelets constantly have huge flucuations everytime I have bloods taken. Due back at haematology in just over a week after huge drop last time. Tina,🤗

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Hi, that's very unfortunate. I had headaches almost everyday. I'm Jak2+. But everyday aspirin resolved this.

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I have been in aspirin since March and it doesn’t help with the headaches.

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Same as cha1956, started on HU and the headaches went away, it’s been great

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I’m PV jak2+ diagnosed in February. I find my headaches get worse when I need a venesection. Wake up with it so sleep doesn’t help. I find walking, fresh air and extra water helps a bit but yoga seems to ease it the most - think it’s all the deep breathing involved!

There are specific videos on YouTube yoga for blood flow, yoga for tension, yoga for neck pain etc. I do it every day and it definitely helps me.

Hope you get sorted out soon x

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Sorry not read the whole thread so apologies if covering old ground - short answer is yes. I was never a headachey person before but most certainly am these days.

I believe mine is a combo of stress (ebs and flows of everyday life I suppose!) and also anaemia. Your doc will have identified any anaemia, but it could also be a side effect of any medication you’re taking as well (check out aide effects on the NHS site)

I find the quickest and most effective relief for me, is the dissolvable cocodamol from Boots. (Very specific, but that’s the least harsh-tasting of the various brands I’ve tried). You’ll get the speech about max 4 times per day etc etc, but the reality is that I really only need to take a dose a couple of times a day when my blood levels get a bit in the toilet.

Hope that helps!

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Hi Dazakella2010.

I was the same as you with headaches and a tight chest right up to my throat which were really getting me down. I was finally diagnosed with depression and anxiety. I was put onto Depression and anxiety medication and that cured the tight chest and reduced the headache to the top and back of my head. I still get occasional headache at the front of the head which is not as bad as it was but more so in the hot weather.

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Yes, ET Jak2+ and recently diagnosed with anemia too. Mine last between 3-5 days currently, day and night. Paracetamol doesn't touch it, neither did dihyrocodeine that the doctor gave me for them. Going back to see him in 2 weeks (1st available appointment!) to see what else he can suggest. My Hydroxy has been halved at weekends to try to bring my red cells back up without raising my platelets too much.

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I cannot believe that nobody has mentioned the need for constant water intake throughout the day. that helps a lot. I ensure I have at least 3 pints but only sipping constantly rather than taking huge amounts at a time.

Also, eating anti-inflammatory foods and avoiding where possible, those that cause inflammation to the joints and muscles.

I too am ET and JAK2+ and administer Interferon alpha 2 every 10 days. That in itself exacerbates the dehydration, so water is my friend. Try not to get onto strong painkillers. They are nobody's friend! All the best. P.x

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Hi , that sounds very much like the type I get. I also had the scan . Have you looked up anxiety/stress headaches? I don't know if you suffer from anxiety at all. Even the diagnosis and having a condition can make you anxious sometimes without you realising it. The physical symptons I have had with anxiety are hard to believe. And having ET might be having that effect and giving you tension/anxiety symptons x

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Hi jodary

I had my headache 7 weeks before I was diagnosed.

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Yes, I have frequent headaches. I also had a negative brain MRI. My doctor prescribed topamax to prevent. It works well for me.

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I was having daily headaches for years before starting HU. Now they are much less frequent. Ibuprofen was the only thing that helped them and it really just took the edge off but didn’t take them away. Tylenol and Aleve were useless against them.

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I was diagnosed at age 52 with platelets at one million. I had headaches daily for about 2 years prior but did not have bloodwork done. I just thought it was menopause because I was having insomnia & night sweats as well. When diagnosed after a routine physical I was put on daily 325 mg. aspirin and about 6 months later started HU 1000 mgs. daily when platelets reached 1500. I’m not sure which stopped the headaches but they lessened with aspirin and disappeared with HU. Might have ended with only aspirin eventually. It definitely wasn’t menopause because 14 years later I’m still having hot flashes & insomnia but not headaches. I believe it is the sluggish blood from ET that causes headaches.

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Hi Kelly. Like you I have ET and am Jak2+. Two years after diagnosis and whilst just on aspirin, I developed a constant headache that in the end I had for 20 months. My baseline headache was strong, but would surge in strength when I laughed, coughed or sneezed. If these symptoms are similar for you, then look up Primary Cough Headache. This is what I had and the neurologist said no known cause and no known cure. I found that over the counter headache tablets were pretty ineffectual. What helped me was that I found a physiotherapist who specialised in long term headaches. He focused on my neck and specifically my second and third vertebrae as these were out. So I hope this info helps. My headache did stop after 20 months and my experience with long term pain makes me absolutely appreciate how lucky I am to now have pain free days.

Cheers

Mark

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Sometimes our secondary symptoms are related and sometimes they are not related to the MPN. The disorders are rare and docs are not always clear what is what when it comes to this. It is worth learning more about the role that JAK2 signaling plays in the overproduction of inflammatory cytokines that cause secondary symptoms we experience. It is also helpful to know what your specific JAK2 mutant allele burden is. Here is a copy of a previous post that might help. All the best to you.

JAK2 = Janus Kinase 2 gene. The JAK2 gene is comprised of a set of alleles. When some of these alleles become mutated, then you are JAK2+ - typically results in either ET or PV. The percentage of the alleles that are mutated = JAK2 Mutant Allele Burden. Speaking broadly, people with a JAK2 burden less than 50% will have a milder course of the MPN. There are a number of factors why this is so. JAK2 signaling drives hematopoiesis (thrombocytosis, leukocytosis, erythrocytosis). It is also thought to trigger thrombosis. Emerging research is focusing on the role JAK2 signaling play in increasing the production of inflammatory cytokines. The cytokines appear to be responsible for many of the secondary symptoms we all experience.

Here is one reference about the JAK2 Mutant Allele burden. bloodjournal.org/content/13...

Here is a reference to the role of inflammatory cytokines in MPNs ncbi.nlm.nih.gov/pmc/articl... .

There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.

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Hello,

I was diagnosed ET JAK2 + three years ago.

I had dreadful headaches, but found that if I drink two and half liters of water a day, I almost never get them.

I had an MRI too and that was negative.

I hope your headaches go and it is a simple solution like water.

Good luck.

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It could be your bite. Have dentist take a look

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All been checked

Thank you

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Thank you all for your reply’s.... my nurse practitioner is calling me on Tuesday after a meeting concerning my treatment tomorrow. X

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Hi Dazakella2010

Hi there I had a blood clot on the brain in 2009, this was sucessfully treated, my headaches were problematic, I am on a vasodilator called clonidine and in ten yrs no further headaches, it also helps a lot for sweats due to menopause.Hope this is helpful.

Regards LAV 007

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Yes I have had debilitating head pains for years it is strange not to have one😠 CBD oil, bathing my head in warm water ( use flannel/cloth) helps, brushing hair, massaging scalp offers relief. I was prescribed indometacin, the neurologist diagnosed neuralgia.

I hope you get an answer soon, Best Wishes 🙏 Angelina

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Could it be your sugar level causing the headache?

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Hello, I’m so sorry that you cannot find relief for your headaches. I know this sounds really silly, but the hematologist said to drink at least two and a half litres of water a day. If I forget, I get the same type of headache that you describe.

I do believe that mine are also stress related headaches and I know that since I have had ET (Jak2+), I get very tense. I have a very short fuse.

If I drink plenty of water and rest, it helps.

I hope you find relief soon.

Hugs,

Marci

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