Hello! I have ET, JAK2+, with platelets averaging 600K. I’m a low-risk patient and only on 2 x baby aspirin daily for blood thinning.
The migraines and fatigue are my main symptoms and I was wondering if anyone has any advice on migraine treatment?
I’ve tried
Amitriptyline
Propranolol
Zolmitriptan
Topiramate
Sumatriptan
Acupuncture
Dietary manipulation
And the usual NSAIDS.
The acupuncture is great but the effects only last for a few hours. Has anyone else had success with anything else? I have both chronic migraine and hemiplegic migraine, they’ve been more frequent since my platelets hit 600K.
Thanks for reading!
Written by
LucyAshtonGeering
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I had terrible headaches as well.I was unable to speak or even think sometimes. Now, I am on clopidogrel and Propranolol (plus a few more) but very occational I do get them now aswell. I have no idea if I am helped by reflexology but if I do that regularly I seem to feel much better. The first time I had it done was 1980 I think , and I have since then tried to have it done as often as I can. It takes 3 or 4 times, after a longer break, before it starts do me good but it really helps my aches and pains in other parts of my body. This is a proper reflexology and not the general stuff some beauty parlors are offering. So, I do believe it does help me from not getting my head aches, but I cannot prove it!
Thank you for your answer, I’m sorry you had the head pain too. Im glad reflexology is working for you, I’m interested in it and am looking for a practitioner who’s happy to treat MPN patients.
Thanks Peter, I have a big pot of magnesium just waiting for me once this course of Lansoprazole finishes tomorrow. How long did it take to build up for you? My doctor says I need to take it for about a month before it starts working.
Lucy, it can take over two years to build up your reserves of magnesium, what make and what type of magnesium is in your big pot? My fatigue went in three days when I started taking magnesium. How long have you had the migraines for? A lot of medication contains fluoride which depletes magnesium, also I believe MPN patients have a faster burn rate (using) of magnesium and therefore require higher amounts. Please read the article below.
Thanks Peter, that’s an interesting read. Having never had a single one before, my migraines arrived with what’s termed a ‘thunderclap’ four years ago, caused by a spike in my platelets. As the platelets have been rising over the years since, the migraines have become more frequent and more severe.
My magnesium tablets are called MagAbsorb - 150mg magnesium citrate tablets. They’re big white jobs. A migraine specialist has given me a dosage to try, I start tomorrow. I’ve been on 2 baby aspirin for the ET for 4 months only, so I don’t think it’s the aspirin’s fault. Really hoping this makes a difference!
Lucy, citrate is not a good one to take, it will have you running to the toilet, it's a laxative, I recommend glycinate by Doctors Best it is non- laxative also buy a 25kg bag of magnesium flakes from the Dead Sea and use them in the bath, 3-4 handfuls soak for 20-30 minutes and make your own magnesium oil with the flakes. You will not build up your reserves using citrate, you need to be getting 800-1000mgs a day. Avoid buying anything what contains magnesium oxide.
Thank you Peter, I’ve been thwarted in my wish to take magnesium by my GP who wants me back on a higher dose of beta-blockers. Last time I took those I got severe pains in my calf and forearm
muscles, which built up over several hours before subsiding - they were as intense as bad migraine pain. I have very low blood pressure and my theory was that because the beta blockers were lowering it even more, and because my
blood is too thick, my muscles weren’t always getting all the oxygen they needed from my sluggish blood flow. I stopped the beta blockers and the pains went away. So if that happens again I’ll tell the GP and go down the magnesium route. Might just phone my migraine specialist first though and see what he suggests - I can handle daily head pain, but anything on top of that is too much.
Hi Lucy, my migraines completely stopped when I started taking Pregabalin, this was for anxiety but psychiatrist thought they might help the migraines, which they did! I suffered from "silent migraine" without much of a headache but horrible aura symptoms (vertigo, tingling, confusion etc). I'm not currently diagnosed with an MPN still waiting on JAK2 result, in case this is relevant. All the best.
Hi Lucy. I take propranolol plus Vitamin B2 (four capsules). It moderated the migraines but - touch wood - they are not so frequent or bad now.
My daughter suffered from awful, frequent migraines throughout her teen years. Her drug try out looked very much like yours. She was finally put on high dose magnesium - as I recall 600mg a day - (plus ongoing amitriptyline) which certainly moderated them. They finally went when she had her (completely disgusting) adenoids and tonsils removed. Who knew??!
Anyhow, she ultimately saw an excellent neurologist / headache specialist, Dr Mark Weatherall. He heads up The London Headache Centre. He has NHS practices at The Chiltern Hospital and Ealing Hospital and also sees private patients in central London. I would thoroughly recommend him if you are anywhere in the vicinity. I’ve also seen him (hence the B2). He seems to have an arsenal of approaches and very positive about what might be done. And he is a thoroughly nice guy!
Thank you Ebot! I’m with Dr Parkinson at the London Headache Centre, it’s such a good place, I’m very happy to be under their care. They’ve given me a long list of different treatment options which I’m working my way through 😁..! I was doing well with high doses of aspirin for acute migraine episodes, but they ended up giving me gastritis / gastric ulcer, so I can’t take any more aspirin except the baby ones for the ET. So my current GP has put me back on different triptans and beta blockers which aren’t working, and I thought I’d see if anyone had anything to offer on here. I’ll look into B2 as well, thank you.
Well you’re in good hands! I’m not sure why Mark gave me the B2 rather than the magnesium. Maybe because of the MPN?
I know others in these posts have debated the positive effects of magnesium. I just want to emphasise that in relation to migraines it is given in much higher doses than advised by the manufacturers. The evidence suggests it only has an impact at these high doses. I would not want to self dose (with magnesium or anything else) without the advice of a neurologist and the express consent of my haem.
Absolutely! I take nothing without consulting a doctor first. Dr Parkinson has recommended that I take up to 500mg magnesium daily for migraine, I’m really hopeful it works.
Hi Lucy , I have ET for over 20 years, and was only on aspirin ( stable platets 450-500), and migrene , I tray everting , and help me good slip, magnesium , lot liquids ( camomile tea with lemon and oranges,) and last 2-3 years I drink every morning 1 soup spun Hawaian TRUNONI ,and help mi lot, wery rare I have now migrene , but I now. 60 , not working and slip minimum 8 hours. You can found on Internet about NONI juces , I tray 3 different brand , but I think TRUNONI , for mi working best. I' m happy if I help, for mi really working , after so many years safering of migrene . I houpe yor be faund samting working for you.Best wishes Lilly1958.
Hi Lilly, thank you so much for your message! I’ll look up the soup you suggest - I’m also eager to try everything if it stops the migraines. My sleep is overall pretty good - I get between 8-10 hours a night, and sometimes a few hours during the day. Also I drink lots of herbal teas and water. I’m 38 and have had to scale back my work because of the migraines and fatigue. I’ll check out the soup and the juice, thank you for your advice!
Hi Lucy, Hawaiian TRUNONI not soup , this is juice, strong tast, and only 1 spun I put in big glas in water in morning on empty stomach , you need dring minimum 1-2 month for Se result .I was Sam you big problem with job , tefore I try everting , same time no undestud me , sametime I was fine in the morning and for 2 hour of work I must go home , I was filing bad, and I was yang like you . I wish I now for TRUNONI before. Before start you read site Hawaian TRUNONI , and you can se what people say about TRUNONI , best is for migrene. From my hart I wish you fill beta soon !!!
Hi Lucy , I'm agen , I must tell you good new about my sister in low Daughter, She is only 32 and years safering from migrene . She was on very strong medicine for migrene with wery bad side effect , she tray so meni different tablets , noting help, was on emergency so meny tames for migrene , but she heven't got MPN , don't now reason for migrene . I told her for NONI and she start every moning with 1 soup spun with NONI with 1 ful glass of water .She told me for 2 month no migrene For full 2 months.She is don't belive , becouse every weak she have one times. She ordering organic NONI from Hawai , made from fresh fruit( like tru NONI , and she is very happy ? And still don't believer she is free from migrene . I'm wery happy for her , and can start new live . She and me drink only NONI from fresh fruit? Not fermenting . I like to help you , becouse I years safering of migrene . I houp , for 3-4 month you be writing my migrene stop, I can't go to slip before I tell you this good news . I wish you from my hart life witaut migraine, Lilly 1958!!!
Hi Lilly, that’s amazing news! I’m so happy for your daughter. Thanks so much for letting me know. I’ve been trying the anti-inflammatory diet from MPN Voice for 6 weeks now, and my migraines have weakened. I was primarily doing it to help with fatigue, which it seems to, and as the migraines have improved too I’m continuing with it! My stamina has improved a lot, I can walk my dog for 40 minutes now with only occasional chest pains. If the migraines come back I’ll definitely be trying the Noni juice. I looked it up as you suggested, it sounds amazing.
With all best wishes,
Lucy
Hi Lucy, I was exactly the same as you, platelets around 600-700, migraines started once/ twice a week but escalated to 2-3 a day. Amitriptyline worked for me but it did take about 3 months for it to work - how long did you try it for?
Thanks for your message. I think I was told to take Amitriptyline as required for acute episodes (it was a couple of years ago now). Maybe that’s why it didn’t work for me - it sounds like you take it as a prophylactic? They had no effect other than making me very tired, so I used them for sleepless nights instead... my migraines have diminished recently since I cut back on work and switched to an anti-inflammatory diet.
Dear Lucy, not sure if you’ll see this reply as it’s so long after your post. Many of us had migraines when our platelets got that high & once they were lowered by Hydroxyurea the headaches got much better & for many disappeared. Someone’s doctor said it was caused by very tiny clots in the vessels to their brain. Do you still have headaches? Are you still on the diet to reduce inflammation? Katie
Do you have any side-effects from the hydroxyurea? Yes I do still get the head-pain regularly. I’m not on any treatment for ET other than aspirin (I’m under 40yo which I think has something to do with treatment decisions?), so have to manage the migraines alongside. I was recently having success with propranolol as a barrier med, until a GP belatedly noticed that I also have asthma. Apparently there’s quite a serious contraindication. So I’m currently coming off the propranolol and trying magnesium, hypnotherapy and CBD for the migraines 🤞🏽. It’s ongoing!
The reason I mentioned Hydroxyurea is that numerous folks on here in the past said their bad headaches went away once on Hydroxyurea. My only side effects are occasional mouth sores that go away within 1-2 days & aren’t ever painful. If you take it properly and use plain toothpaste (no tarter control or whitening) and a really soft toothbrush I’m ok. But I need to take them immediately after drinking some water & swallow them right away with enough water. I get 2 types of headaches but they’re substantially less if I either avoid or control stress. Meditation (daily) really worked for me. I’m also on CBD oil & cream. What country are you in and we’re you able to find high quality CBD? Katie
Stress avoidance is key - I have completely changed my lifestyle to try to avoid any migraine triggers. It does help me manage them.
I’m in the U.K. and have got some excellent CBD oil. Once I’d worked out how to take it around the aspirin contraindication I started building up my dose. I’m currently taking 1 drop daily and can take up to 5; from what I’ve read it’s a question of finding the dose which works for you.
Glad you’re managing ok with the hydrea. If I need treatment, Peg Interferon is top of my list!
Migraleive always worked for me, also acupressure between the thumb and first finger, when migraine hits apply pressure for 30 seconds, instant relieve. Takes a couple of goes to get it right. I hope this helps 😉
None of over-the-counter meds touch my migraines, but thanks! I’ll try the acupressure. Do you literally mean just pressing the thumb and first finger together??
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