I've had quite the journey since April with what I call Cluster Migraines. I'm 63, ET JaK2 V617F. Aspirin daily, 90mcg Pegysis Interferon every 8 weeks
Had migraines since a teenager. I was diagnosed in 2016 ET while seeing Migraine specialist with more frequent migraines. 1 or 2 a month usually. Then in April 2024 repeated, multiple attacks, over 3-9 days, sometimes revolving, one after another with breaks in-between of 3/4 days or a few weeks of blissful migraine free relief. Have struggled with this, mostly as recommended to not take ibuprofen since going on Inteferon, so no line of defence for pain relief.
Just been prescribed beta blockers Bedranol propRANOLlol 80mg for the migraines.
Has anyone else any experience of beta blockers whilst having an MPN?
Thank you,
John
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Buddhability
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The beta blockers can be effective but can also have significant adverse effects. I have used 10mg atenolol to treat hypertension. I was not able to tolerate it due to severe exercise intolerance. The only way to know how you will respond is to try. You can always change to something else in the med is not tolerable or effective.
It is worth noting that there are other classes of medications used to treat migraine, including triptans and CGRP inhibitors. My son uses a triptan, which is effective and tolerable. I use a CGRP inhibitor which is highly effective and has had no adverse effects.
It is clear that you need intervention for the migraines. It sounds like you may have some concerns about propranolol. This is a conversation to have with your provider and/or pharmacist. Suggest that since you have questions about the propranolol you review all of the contraindications and adverse effects. Do the same for a triptan like amitriptyline and a CGRP inhibitor like Aimovig or Nurtec. Crosswalk the results to your treatment goals and risk tolerance. Review the results with your provider and make a decision about what you prefer.
I have had migraines since childhood and at times have this clustering. Doctors seemed to have a list of drugs they try. Amitripyline had some benefits, beta blockers nothing. The thing that's been a game changer for me are the triptans. The second version they tried (rizatriptan) really helps. In an ideal world there would be a drug that prevents them entirely but this certainly helps the pain and shortens the time I have the bundle of symptoms.
Thanks Scaredy_cat. Can’t help but feel sorry for your experience with migraines (they are awful aren’t they?) but that’s great to hear of your experience with triptans.
I feel I’ve got somewhere to go but will try these beta blockers first. Thanks for your reply.
It may seem obvious but have you checked your Vit B 12 level.It does not have to be severely low to cause problems.I have had migraine with aura since childhood which waned as I got older.From 67 years on I started to have almost daily visual migraines,often in clusters .I saw two different neurologists who suggested epilepsy medication as the only choice, which I did not fancy! After three raised platelet counts over nine months I was finally started on B12 and soluble aspirin ,within 3 weeks the migraines had stopped,?aspirin or B12?? Not sure which worked but still taking both 4 years on. My B12 level is holding its own at just above average. Really hope this would work for you because migraines are horrible.
Thanks Morebooks! I couldn’t agree more, migraines are horrible!
I’m vegan 8 years and have taken B12 supplements for that amount of time. Saw a neurologist last year and they recommended B2 ( a large daily dose) which I’ve dutifully taken. I’m due for another meeting with the neurologist but I think on your experience I’ll check my B12 levels to see what they are. Thanks for your reply!
Yes I suffered terrible migraines with aura for decades. I started taking Beta Blockers for portal hypertension and my migraines have completely gone. It is such a relief. My daughter has also recently been prescribed them for migraines and her’s have gone now too. Fingers crossed they work for you!
all drugs can have sides and 80mg is a high dose. There is no direct issue between beta blockers and MPN as far as I know. I take 1.25mg bisoprolol if needed for occasional tachycardia and my MPN expert was not phased.
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