Hi all, just a rather quick question,
Before I was diagnosed just over a week ago, I was getting random silent migraines. Obviously now I know why. I’m on 75mg Aspirin daily, will these silent migraines stop now? Or is it a symptom I’m going to have to accept/live with?
I’m grateful they’re not accompanied by a banging headache anymore (I used to suffer from “proper” migraines as a teenager) but they are annoying when I can’t see properly at work for an hour when I get one!
Thank you!
I used to have these before I was diagnosed with PV (with elevated platelets as well as high RBC/HCT).
I haven't had one since I went onto aspirin + HU + venesections. Over 5 years ago now.
I couldn't say whether the aspirin only would have the same effect - I hope it does for you - nothing worse than an attack coming on whilst you're driving!
Andy
Yes driving with migraines isn’t cool! Thankfully I’ve never been behind the wheel when it’s happened but I’m always at work and working with IT, I can’t see the screen so have to sit there like a lemon doing nothing until it passes and I get my eyesight back!
Yep! Been there, done that. And trying not to look out of it in meetings. Hope you find they go away.
Hi.
I have had PV for 4 years and take aspirin only.
Yes the visual migraines do go in my experience.
My visual migraines were one of the symptoms of my extremely high RBC at the time of diagnosis and went when my bloods were back in the acceptable zone.
Initially I had weekly venesections that impacted the migraines the most.
I have found if I eat well and drink water and exercise I’ve not had them since.
Kind wishes
Sanga
Hi,
I have ET, I was on aspirin now on clopidogrel The silent migraines were one of the symptoms I had for a while before diagnosis. I wouldn't say they have completely gone but I get them a lot less [probably once a year now]. One thing that really helps is staying hydrated - I notice that when I do get them, I have often been dehydrated at that time too. My haematologist told me to drink a pint of water when one comes on and I've tried it and it does actually work - or at least it goes away faster! Staying hydrated is really important for MPNs in general - just in case nobody has told you that yet!
Hope that helps,
Jo
Ok thanks! Hydration point makes sense. No-one has told me much yet as I only got told on 2nd amid the covid outbreak so much of treatment/info is on hold until this outbreak calms down and I can start going to further appointments. I’ll make sure I keep hydrated more then. Thanks!
Oh, wow - what a time to be diagnosed... Hopefully you'll find lots on information here in the meantime. I have got so much out of this forum since my diagnosis and there's usually someone who can offer some kind of advice!
Dear MadamCholet1,
I have suffered from migraines since 10 years old. Vision goes away for 30 minutes, which has always been the hardest symptom for me. They turned more silent around 5 years ago, so no more headache usually. Frequency has been once a month on average. Thought aspirin, that I started after my ET diagnosis 2 months ago would make them go away, or at least make them more rare. So far I have had just one, last weekend. So the jury is still out.
Tip for hydration is a valid one! Also regular sleep, nutrition, well you know the drill.
Cheers,
Bigcheat
I had terrible headaches before diagnosis when platelets were too high. That was five years ago. Only get a random one now and again.
I have PV and I used to get visual disturbance- it was as if someone had turned the focus up and the light. The colours were brighter and more vivid. Occasionally still get it, but very rare. My haematoligist told me at my first appointment to drink 2 to 3 litres of water a day. I certainly know if i haven't-very tired and lethargic. Only downside is that you allows need to be near a loo. My book of public conveniences, hedgerows etc comes out next year 😁😁😁. Hope you get sorted and everyone keep safe.
Hi. It does seem to be a symptom of MPNs. I've had them for a number of years now before I was diagnosed with ET recently, and I haven't had one for a while. I'm also on Aspirin, going on Interferon soon,
Hi - I had silent migraines for years, zig zag lines so bad I couldn’t see clearly and I would take two paracetamol and just sit at my PC looking busy until it passed. Eventually I discovered I had ET Jak2+ and started on Hydroxy and aspirin - touch wood never had one since. Keep safe everyone.
Yes, I had the zig zag light show several times a week sometimes, for about 2 years before diagnosed with ET Jak2 with MF. Started aspirin 75mg...not one since! Hoping you have good results too. I noticed that I got them very often after coffee, red wine and if lacking water x
Hi, I had silent migraines or scintillating scotomas for over ten years before discovering a high platelet count and that I have ET JAK2+. Before diagnosis and taking aspirin I was averaging a headache a week. In the past year I've had five or a 90% reduction.
Hi, my migraines with aura ( up to three a week) ended immediately after taking aspirin, and after that clopidogrel . My platelets were causing them since then my rbc was still normal at that time...
Hey there,
I experienced my first ocular migraine days before my heart attack which then turned into diagnosis of ET. I am on 81 mg aspirin and Hydrea and I still get the ocular migraines. I was going to talk to my hematologist about it because they have been getting more frequent for me, Ugh
Not sure if it means my platelet numbers may be higher than normal but do not have an appt until June. Best wishes to you
I was having terrible headaches for months 12 years ago when I was to the doctor and through routine tests, found I had high platelets. He referred me to a hematologist and I got diagnosed with ET Jak2 positive. He started me on HU and my headaches went away.
Glad yours went away. On meds for a little over a week. Hadn’t helped yet. Guess there’s still hope!
Sorry, I just saw this. Are you still getting headaches?
Good morning. Not for sure what a ‘ silent’ migraine is. never heard it called that, but have had migraines for about 40 years. Diagnosed with ET JAK positive about 5 weeks ago and have had a headache that started about two months before being diagnosed. Just started hydra 9 days ago. This headache is not like a migraine, just a constant throb. Aspirin doesn’t help. Drinking water does help a little. What I’m finding worrisome is I feel like I’m loosing my memory. I forget almost immediately what I was just thinking about. Been going on about the same length of time as headaches. I’m thinking they’re connected. Hopefully when one goes away they both go away. Not fun that’s for sure.
Have you consulted a doctor about your memory problem?
Got a drs appt next week Tuesday.
So my headaches went away, but not the brain fog which I attribute to my memory problems. The brain fog really never went away, although some days were worse than others. I believe some of it was attributable to the medication which my doctor tweaked many times over the years. It got really bad last year and that's when I found out I was anemic. I changed hematologists last September and she told me what I suspected; that I had progressed to MF.
Good luck with everything. Let us know how you are doing.
It is called an ocular migraine. I had them also, but they went away when I started the aspirin and Hydroxyurea.
I also had very bad migraines before I was diagnosed with PV 4 years ago. I have aspirin and Hydroxycarbamide and 3 monthly venesections. I have had no migraines since. A blessing itself.
Take care
The answers on this thread suggest a correlation between a previous or long-term experience of migraine and a subsequent diagnosis with an MPN ...
I would not call myself a migraine sufferer but, like my late mother, I started in middle age to experience a sensation that we called "zig-zags": light or coloured zig-zaggy shapes that seem to float across the visual field (even when eyes are shut). For me it could be triggered by tiredness, dehydration, a sudden head movement (such as when washing my hair), eating chocolate (not every time, fortunately!), perhaps also stress. Sometimes I would be unable to read (on page or computer screen) for half an hour or so as the visual field was too disturbed. Only very occasionally was the zig-zag sensation followed by a nasty localised headache.
After diagnosis in early 2019 I took Aspirin 75mg EC etc for much of that year; I'm still on it now, with Hydroxycarbamide chemotherapy started just a few months ago. Reading this thread has encouraged me to try to recall when I last had the zig-zags ... I think it must have been quite a while ago, so perhaps taking Aspirin (and drinking more water) does help to reduce this effect.
I hope your symptoms will soon improve.
Hi Madame Cholet,
I had my first silent or aura migraine when my ET started 10 years ago. There was one really big one. I get like a zombie for a few days after that. My next one was a year after my diagnosis (7 years later) and immediate treatment with Anagrelid and aspirin. They came in groups. 2 came in a month, then 2 in 2 days, then one a day later. 2 more on the same day months later. Then 6 months later. I’ve been free of them for 14 month now. I’m not sure why. I have my health very good under control. I believe that CoQ10 has a bit to do with this and also the other supplements that I take, all natural ones. A lot of Vit. D, C, B complex, magnesium, Zink, ginkgo, they all help enormously. I have so much more energy and hardly get colds or flu any more. I’m also on he auto immune paleo diet for 2.5 years now. I’ll probably stay on it all my life.
Interesting to read the responses here! I have had silent migraines since a teenager but in the decade before ET diagnosis I was getting more and more, around once a month on average. Since going on aspirin in December 2017 I’ve not had a single one which is a real silver lining!
Hi there and welcome. I would say that it is possible they may stop or decrease - mine certainly did. I had migraines with aura fairly regularly before diagnosis and since starting blood thinners, first aspirin and now clopidogrel, they have been much less frequent. It is difficult to say if that is the only reason though as a lot of other things have changed as part of my journey since diagnosis. I have reduced my working hours, taken up yoga and been much more careful about staying properly hydrated. Good luck on your journey and I hope that you do find there is an improvement.
Vicki
Ocular migraines and red eyes
I'm new here. Chemicals and cause of ET?
E.T association with Migraines?
Vitamin B12 Deficiency 
Newly diagnosed with ET jak2+ and just looking for reassurance 
