I think they are common with PV, I have had them regularly for years, although none for a year or so. Maybe wrong but think its connected with high platelet counts.
My sister gets too, she has ET.
I used to find them worse when tired, found laying off coffee seemed to help.
Found best way to handle if they happen, just lie down and close your eyes for 20 minutes.
Suffered with these for over 20 years with the exact symptoms you describe and after working with my gp went through every tablet in the book without any success. Discovered myself (whilst on holiday in Austria...!) that if I went for a long walk at a quick pace for about 30 minutes it went away (though only until the next one rolled up). However, after my heart attack three years ago and subsequent diagnosis of PV I've only since had one minor blip. My gp believes it's probably because I'm on a very low dose beta blocker (1.25mg) daily. I'm also on 75mg aspirin daily which, so my haem thinks, could also be beneficial. Interestingly, my gp and haem both agree that anything with caffeine in, whether it's tea, coffee, or even any migraine medication containing caffeine - including paracetemol - is detrimental. Go figure. We're all different and of course different strokes for different folks. Anyway, I'm now 99.9% migraine-free and is the only good thing to have come out of my last three years medically Good luck with your journey......
Hi, I have PV and get them at random times, dont seem to follow a pattern. I found them quite scary to begin with - flashing lights, looking through broken glass or water and one day when I was sitting at the computer at work the capital letters started to drop down on the document I was typing, then they were okay and then dropped again. I phoned the optician and got my eyes thoroughly tested within 20 minutes of this happening as he was concerned it was stroke related but everything was fine. My haem said if it keeps happening they might investigate further. The last one I had when the letters dropped was accompanied by a headache and feeling really nauseous. Also get the blind spots like you and a colour will appear on everything! You are not alone but I think it is important we keep our GPs and haems up to date with any new symptoms. Best wishes Aime
I have ET as opposed to PV but suffer from terrible migraine, I don't get the vision issues you mention but I get an intense pain in the right hand side of my head, around my right eye and down the back of my neck, nausea and eyes/vision goes "sticky" for want of a better word. The only thing that works for me is sumatriptan migraine tablets. They open the blood vessels in your head and the pain can disappear in about 20minutes.....they are a little bit of magic in a pill!!! They can make you feel pretty rubbish afterwards though, they make my throat ache and I get what feels like a tight band around my head for the rest of the day......but then agiain anything is better than that awful pulsating pain in my head. Awful things migraine.
Yes I had it for years but before diagnosis. After diagnosis and prescribing of hydroxycarbamide 2 per day and incidentally, Lisinopril and Bendrofluazide for HBP I hardly ever get the migraines. So I personally dont attribute the cause to medication but more likely my PV.
I suffered with migraine with aura and stroke type symptons before knowing that I had PV and it would happen at any time. I read somewhere that the PV can throw up allergies and by luck I found out that I'm allergic to dairy, caffine and spices, oranges.
Once I changed my diet I have been virtually migraine free. Chocolate, definitely is a trigger, so unfortunately I don't eat it now. Alcohol also doesn't agree with me.
However, I do a lot of sport and tension gives me a headache but not a full blown migraine with aura.
I hope that helps, I personally think that the PV and thicker blood through high platlets might influence the migraines but it's difficult to say that you have them because of the PV, try a food diary and cut out foods and introduce back one at a time over a period of time..
All the best.
Lizl
I'm nursing a migraine at the minute. It started at the end of a run. I first noticed it when I glanced up and could not see half of a man coming towards me. Not sure if that makes any sense to anyone. My platelets are really not that raised but I tend to get these migraines. I am Jak2+ with possible ET (haematologist is repeating the test). She was quite concerned by these headaches as they could be connected.
I also get bother with my balance, sometimes a tingling sensation travelling up one arm. At the minute I have throbbing behind the opposite eye to the one the aura began in. When I stand up my forehead aches. Also feel very nauseous. I am now realising I should have taken a Triptan at the start instead of waiting, allowing the headache to really start and then popping paracetemol. There was an element of denial involved in that decision.
I have suffered from similar symptoms in the past - visual disturbances, but not accompanied by headache. They were very alarming but luckily only lasted for a few minutes. I had various neurolological tests with no positive diagnosis at the end of it. My haemotologist did not think it was related to my ET.
Those of us with chronic diseases often assume that other symptoms are related to our 'main' disease, but the truth is that we are just as likely to suffer from other, unrelated, problems.
That's the way I have looked at my migraine problem - I have sought advice and treatment as if there was nothing else wrong with me - of course, I told all the neurologists about my ET, but they agreed that it was likely to be unrelated.
My migraines were usually related to dehydration, excess caffeine, visual triggers and, most obviously, strong chocolate. I haven't had to give up chocolate or coffee, but being aware of the factors involved helped me manage the condition. Thankfully the attacks are very rare now.
Hi Cata, Unlike some of the rest my migraines are not triggered by chocolate - thank god!! I haven't manage to find a connection between them and diet. Best wishes Aime
I have 32, but before diagnosis ET I was refering to hospital (in 2007) on neurology with symptoms migrain, headache left side, tingle in hands....high platelet (1050).
When I startet take drug- anagrelid, neurology explain my hematology is not migraine only TIA and I take ibuprom...day by day
In my opinion reason is wrong endodontic therapy, dental caries, how look your teeth? candida in saliva etc.?
neurology it was only "episode " explain to me my hematology why I have TIA - I have tenacity plasma but reson of that is obscure...Neorology to suggested my hematology it is maybe protein plasma...but research nothing show
My one tooth was wrong endodontic therapy I had gangrene, so I think it's bacteria ...
Hi I was diagnosed one and a half years ago with et. Yes I have had the same headaches for many years. Now that I'm on the hydroxy and drink lots of water each day, I don't have them.
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Good luck with your journey......
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