For the past ten days or so I’ve been having really bad frontal headaches forehead, behind the eyes and over the front of head which seem to come from back of the neck. I’m wondering if anyone has experienced this. I have ET JAK2+ diagnosed six years ago and been on 500 mg Hydrea which has kept bloods in normal range and haven’t had headache problem till now. I saw the Nurse practitioner at my GP’s a week ago and prescribed antibiotics as it was thought might be sinus inflamed. Just finished this course with no improvement, so not sinus. During the day headache just dull but developes into really bad pain all evening, every evening. My bloods were fine at last telephone check at beginning of March but Haemo has left it for 3 months check this time and it was one month, then two. Has anyone experienced similar?
E.T. and Headaches.: For the past ten days or so I... - MPN Voice
E.T. and Headaches.
I would contact the heam nurse specialist and ask for advice especially as it's been going on for a length of time it might need investigating.
Hi Azaelea, I was diagnosed in 2017 with ET JAK2 and am now on Hydrea 500mg every other day. I started having headaches above my eyes a year ago. I had a MRI to make sure I didn't have a tumor and that was negative. I then saw a neurologist who diagnosed me with frontal migraines and was prescribed Topimax which has helped alot. My hematologist agreed that this was the best plan. She didn't seem to think it was related to my diagnosis or medication, though I'm not sure. I would encourage to investigate and maybe consider seeing a neurologist. I usually just read, but felt I would respond, hoping this would help.
Zelda B.
Thank you ZeldaB. I will have this investigated. I have been a migraine sufferer all my life but this stopped after the menopause. It was always a one-sided headache with nausea but perhaps this is another form. Thanks for sharing your experience.
I just saw your post and wanted to tell you what has worked for me. I used to get in frequent migraines, although I could keep them from developing into full-blown migraines. I started taking 500 mg of ginger in capsule form three a day and I never have headaches anymore. Of course you should have all of this checked out, but the ginger might be worth a try. Wishing you the very headache free best!
Headaches can be both a symptom of ET and a side effect of HU. It might be good to check in with your hematologist and maybe get your blood checked. Headaches tend to be a symptom that is tied to our blood counts.
I have ET-induced migraines when my platelets hit about 800-900. I have talked to other ET patients who also get them. This was one of my main symptoms pre-diagnosis and going on HU/aspirin resolved it.
Are you taking asprin? Have you tried taking aspirin when you have the headaches?
Has your HU dose changed at all? Any increases?
If it's ET related, the aspirin will likely help. I don't know about if it's HU related though.
It sounds like you're already checking it out with your doctor. That's a very good idea. I would also check in with your hematologist. It's very possibly not ET-related or HU-related at all, but good to explore all possibilities.
I really hope you figure it out. Headaches are literally the worst.
Oh, I just reread and it seems it's been going on for some time nonstop? Definitely call your hemo. They may want to check for clots to just be on the safe side.
I had an MRI in 2021 when I had nonstop headaches from my doctor at the time taking me off the HU for a week. They sent me to the hospital for an MRI to check for a clot. There wasn't one, but constant headaches should definitely get checked out.
I hope it's something easily resolved but it would good to loop your hemo in.
Join the club Azaelea. I have always had headaches but they got increasingly worse after I was diagnosed with ET in 2013. In 2015 a brilliant specialist heamo nurse suggested I may be suffering from Cluster headaches. Never having heard of them I looked on the NHS website and Bingo!!The signs and symptoms were bang on.
Unfortunately I did nothing about it (well you don't go to the doctors with a headache do you?). Until 2021 when my headaches had increased and research let me to a Charity not too dissimilar to this one ie volunteers who are suffering from the same problem helping each other.
I firmly believe there is a link for some of us between our MPN and the meds we take particularly Hydroxy and we are between a rock and a hard place ie stop the meds and risk the possible consequences or stick with it and move on.
Cluster headaches are a type of migraine with no hope of a cure so I wish you luck with yours.
Regards Sue
Sorry to hear about the headaches being a problem. Headaches are a fairly common MPN symptom as well as a potential side effect from hydroxycarbamide and atorvastatin. We can also experience migraines as a co-occurring condition that is not from the MPN or its treatment.
Pain is a warning that something is wrong. A change in the pattern of your headaches should be investigated. Since you have a history of migraine, the investigation may need to involve both a MPN Specialist and a Migraine Specialist. Suggest you contact your hematologist for a consult ASAP. Referral to a provider who specializes in headaches may also be indicated.
I have experienced acephalgic visual migraines as a result of brain surgery, not from the MPN. I consulted a neurologist/migraine specialist who prescribed a PRN oral CGRP inhibitor (Ubrelvy). The CGRP inhibitor stops the migraines within one hour. CGRP inhibitors are well tolerated and have fewer side effects than many other migraine medications. Suggest that you consult with a migraine specialist rather than a GP should you need to pursue treatment for migraines. Many GPs are not familiar with all of the options to treat migraine.
Wishing you all the best.
Thank you Hunter as always I value your advice. I am also taking Atorvastatin so this might be contributing to the headaches also. I will contact my Haematologist and also mention my Migraine history Regards, Fran
I'm currently on 3 hydroxyurea daily and headache daily but i have found and read that the more water you drink will flush out the nitric oxide from the hydroxyurea in your system which is what causes the headache. I have increased my water intake and it has reduced the severity of head pain. Good luck!!
Hi
Sorry to hear about your headaches. It’s something you’re right to get checked by your healthcare team.
Pre diagnosis of ETJ2+ I suffered with terrible, regular migraines which were very debilitating.
Once diagnosed & started taking Peg they went & have never come back (touch wood). For me it seemed too much of a coincidence.
It may be worth asking about a possible switch of medication if your professionals think that could help.
Severe headaches really affect the way you operate & feel so I sincerely hope you get it sorted out.
So sorry to hear you are suffering, I have suffered from Migraines for years ( since my teens I am now 57) they gradually got worse since my diagnosis of ET last year ( platelets were 650 now 907) because this was a preceding condition my GP treated it. It was worse at certain times in my menstrual cycle and pretty bad during the menopause. I have cluster migraines and silent migraines with visual disturbance and my face goes numb, I become dizzy on really bad days. I was on Sumatratriptan when I needed to however once I was over most parts of the menopause and managed my stress better through life style they were very infrequent. I noticed since my diagnosis I have had the pain behind the eyes you mention, at first the daily asprin helped but then they got steadily worse and when fatigued and stressed they became migraines. So I had an MRI scan - all fine and am now on a low dose blood pressure medication daily which helps. On bad days ( fatigue/ stress) when the low does doesn’t work I can double up and this helps.
So my advice is the same of others definitely mention it to your team and maybe your GP, mine has been fantastic from initial diagnosis until now. It may take time to get something that works.
All the very best.
Thank you so much for your message. I understand what you have gone through with migraines as I have also suffered with them since teenage. They did however subside after the menopause and stopped altogether. After E.T. diagnosis I did have the visual aura for short time but being on Hydroxy for 6 yrs now this is first time I’ve had headaches. I’m on BP meds and Clopidogrel instead of Aspirin as it caused a gastric bleed 3 years ago. I think I must take everyone’s thoughts and advice and contact Haematologist. G P doesn’t deal with the E.T. at all. Thank you for your reply.
Hi
I have JAK2 ET and had suffered from the same type of headaches many years. I would often take an antihistamine ( Sudafed) thinking it would help. It felt like sinus pressure and along neck and shoulders. Amd pain in the eye (s) Sometimes I got relief with Sudafed.
I was finally referred to Neurology and I get Botox treatments for migraines - this has reduced my headaches ( which I know are related to my MPN) by 90%.
It’s been a life changer.
Might talk to your provider about this.
Thank you very much for your reply. It’s very interesting and I’m glad you had the treatment that has reduced your headaches tremendously. I see you’re in US and maybe your medical plan funded this treatment. I doubt very much if our NHS will extend to this. I’ve spoken to my Haematologist, had blood test today and will see if that reveals anything. Kind regards
I am in the US. But in the beginning I went to a local nurse who was trained in Botox treatments. I paid for these and once I knew how effective this was, I asked my primary care physician to refer me to neurology to discuss this. They first wanted me to try a few medication’s, and one of them is actually very effective. If I do have a headache now and then, it is called Imitrex.
I am confused that MPN specialist or primary care physicians do not correlate our headaches with our MPN/ET condition.
There are too many of us, that I see on this form, who suffer fatigue, headaches, dizziness, and other associated physical pains that are sometimes discounted by the health profession. I’m grateful we have this form to connect and to feel more “normal” in the process of dealing with our health.
Thanks again for reply. Yes I agree we are lucky to have this forum to share our problems and compare.
I was recently diagnosed with cervicogenic headaches. Took me quite a while to reach this diagnosis. I was having headaches everyday, frontal and pain behind right eye. Turns out my neck was causing this. I saw ophthalmologist, neurologist, pain management, etc. I just wanted to respond just in case this was your issue. You can look up cervicogenic headaches and see if you have these symptoms.
Thank you Bear23 for letting me know about this. It sounds as though it could be cervicogenic headaches. I’ll look into it. Were you prescribed any medication for it?
Do you have the headaches everyday? Is the pain on one side or both sides. Pain behind eye on one or both sides?
YesI do have pain every day. It started very bad about 2 - 3 months ago . It was right across the front for about 2 weeks and very bad. Then began to lessen and ended up on left side of head and behind left eye. It is more of a sharp intermittent stabbing pain now in L front of head, painful to bend down. I have suffered from Migraine all my life mostly on left side but this isn’t like that. I saw the Optician and eyes are healthy but she’s referred me to a hospital ophthalmic dept to test pressure. So we shall see. Thank you for discussing with me.
Ive been going thru a long bout of this (doctor after doctor), also have had migraines, but this was different. Saw ophthlamogist and retina specialist. Eyes good. I wasted alot of time with neurology (meds to treat headaches, meant well, but this was not my issue). After about 1 year of dealing with this. A neurosurgeon diagnosed me with cervicogenic headaches (which is rare). On top of that, when I was explaining the pain (headaches, pain (dull) behind eye, he referred me to another neurosurgeon that requested I try a nerve block (for supratrochlear nerve and supraorbital nerve). It was a small shot in both areas, he did it as I sat in the chair, took total 30 seconds. Pain was gone. Save yourself some time and look those up. The cervicogenic headaches depend. They have PT (neck exercises), and if they find a neck issue may have to address that.
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ET, Headaches and Reflexology 
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