Hi All. I've had ET JAK2 positive for at least 22 years. I've done very well and have been well controlled on Pegasys for 8 years with no history of major complications. I have recently in the past 6 months had a persistent headache and a migraine with aura (1st in 6 years). Sinister causes have been ruled out, so we are now looking to treat prophylactically. My question - do any of you take regular medication to prevent headaches (I'm already on low dose aspirin)? If so, what do you take? Is there benefit of topiramate, propranolol, or candesartan for patients with an MPN?
Many thanks for sharing your experience.
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Nature_for_Life
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I have used a CGRP inhibitor to manage visual migraines that were caused by a brain surgery. These meds were very effective and had no side effects nor interactions with the other meds I take, including the interferons. The CGRP inhibitors come in two forms, monthly injectable and daily oral. My migraines were occasional so I opted for only taking the med when an incident started. It always stopped the migraine within 1 hour. If the migraines had been more frequent, I would have opted for the monthly injections as prophylaxis.
Suggest that you consult with a migraine specialist / neurologist on this issue for the best guidance.
Hi, Recently I relayed here that I developed persistent headaches while on HU that didn't respond well to my "go to" migraine med, Ubrelvy, a CGRP inhibitor. We stopped HU and I consulted my headache neurologist, who put me on tapered course of oral steroids because the headaches (HA) hadn't abated, even after stopping HU. My HA responded almost immediately to the steroids, but at lower doses, the HA (while less severe) again emerged. She then prescribed daily Celebrex and I finally returned to baseline -- no headache. In your case, you cannot stop Pegasys. The neuro and I also talked about what to do if I start a new treatment for ET, and HAs emerge. There's an oral CGRP inhibitor, Nurtec , that prevents headaches (Ubrelvy is taken for episodic HA, and suggested no more than 2X a week, per manufacturer, and hence, insurance coverage). So she suggested Nurtec, or one similar to it -- maybe because I prefer an oral route vs. injection. BTW -- I had a concussion a few years ago and the neurologist prescribed amitriptyline for the chronic headaches that ensued. When I tapered and tried to stop amitriptyline about 6 months after starting (presumably enough time to heal from th head injury), I developed terrible withdrawal (akathisia, etc). Not that everyone is destined for withdrawal symptoms, but with the newer migraine meds on the market, I would suggest considering those over amitriptyline. I hope you find a solution.
Many thanks for your response. It’s very helpful. I see my hem-onc on Monday. I’m in the UK and a referral to neurology has been denied until I try 2 or 3 treatment options first. The CGRP inhibitors I don’t think are part of the options, but will discuss with hem-onc to see their thoughts and if a different path can be taken. Thank you again.
I was on Peg interferon for 5 years . If I got the odd head ache I would take paracetamol and that cured it- the same with bone pain. What I didn’t realise was the effect this drug had on my liver and I would urge anyone to ensure that your consultant looks at your liver readings at each appointment. Good luck with the other drugs.
I've been on interferon for nearly 20 years. About 6 years ago I started suffering from hemiplegic migraines. The usual migraine medication didn't help but propranolol did. Have been on propranolol daily for years & rarely suffer migraines now.
I’m ET JAK2 V617F (since 2016). Aspirin 75mg daily. Interferon (90mcg every 6 weeks)since 2022.
Not sure it sheds any light on your issue but on the off chance that it does:
I was averaging about one migraine every couple of months. But after an onslaught of what I called ‘cluster migraines’ last year(over 12 in a month with sometimes multiple migraines in a day), I was encouraged by my haematology team at Guy’s London to take a vitamin daily b2 Riboflavin, which I still do. On the continuation of the migraines I was encouraged to take a Beta blocker: PropRANOLol 80mg daily which I still do. Disappointedly still getting migraines but like to think they are not as frequent (4 in a month, this month just one so far!!) and not as severe. I’ve recently been prescribed a Triptan Sumatriptan 50mg to take when I get a migraine, this seems to tone down the severity of the pain.
I’ve had migraines since I was a teenager (64 now). Had a fabulous period around my 40s when I’d get just one in a year, or once I think - none! So having them back in my life is f’sure, very unwelcome and why Nature_for_Life you have all my sympathy.
Due to a migraine a few years back where I lost my cognitive abilities (couldn’t string a sentence together) my haematology team weren’t happy with that and referred me to the neurology department. I’ve seen them twice and although that loss of cognitive ability only happened one other time (they’ve asked me to phone the emergency dept for an ambulance if that happens) I’m seeing the neurology department again soon, they contacted me just yesterday and will make an appointment soon.
Hope that information helps. Although I feel when it comes to migraines, you’re in uncharted waters where not everything is understood.
Dear Nature for Life, Several years ago I began having a constant headache. I had had PV jak2 + for 6 years at that point and took one low dose aspirin per day. She recommended I up the dose to two, one in the morning, one at night. Happily it did the trick and my headache disappeared. Best of luck to you.
I am on amitriptyline for my fibro but I am still getting migraines. They actually got worse and I was diagnosed with Long Covid, but I now know it was then my platelets had gone up from under 300 to over 500, so I am actually not sure what exactly made my migraines worse. I used to keep them under control with rizatriptan but my new GP wouldn’t give them to me because of the antidepressants I take for my fibro. I kept them in check reasonably well with 600mg of ibuprofen but then I had a six day migraine not so long ago. I am now back on rizatriptan but because my migraines are mainly hormone related, I am going to try HRT. Apparently it can help or make them worse. I can’t take beta blockers because of my asthma btw.
Another thing to look into might be your bite and TMJD. I have a really weak jaw joint and tense my jaw when stressed (without grinding my teeth). Untreated, it caused horrendous headaches and also often incredibly sore teeth. I had a splint for my teeth made by my dentist (£55) and my symptoms have disappeared, which is great as I didn’t want to take gabapentin. Progressive muscle relaxation helps as well as because my muscle feedback isn’t always the best. Btw, it was my dentist who referred me to the dental hospital.
I have had migraines since my teens and headaches daily as my platelets rise, I am 58 diagnosed with ET. I am on asprin and also have recently been prescribed Candesartan by my GP with the nod from my Haematologist after having everything else ruled out. I have taken everything else normally prescribed for migraines for years and to be honest they have changed from the hormone/ stress related ones I have had historically - so I strongly believe they are ET related. The medication is a blood pressure tablet and at a low dose 4mg to 12mg it can be used to suppress headaches. I have found it mostly works for me unless I am really fatigued or have a virus or something.
I have auras - no headache - migraines which the last two months have escalated so I have 4-5 days of 8-12 aura episodes. Had the same last year so I started Candesartan which now doesn’t seem to work. My gp thinks it’s menopausal but I dob’t know honestly. Well, just saying if Candesartan did work for a bit it doesn’t anymore. Haven’t had any side effects though so you might as Well try it! Fingers crossed you’ll find something!
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