Does anyone have problems in our situation with ocular migraines and red eyes after sleep? Can anyone share their experience with this? Thank you!
I would like to add that a few years ago I discovered that my eyesight had improved by almost 2 times. I wore glasses -2.25, and now -1.25.
I have had visual migraines, but they are related to a brain surgery. Note that visual migraines and ocular migraines are not the same thing. Visual migraines typically affect both eyes and are brain-based. Ocular migraines typically affect one eye and are retina -based. Both can occur due to MPNs. I have also experienced red eyes. In my case it is related to blepharitis. I also have dry eye,
Given what you describe, suggest you consult with an ophthalmologist and a MPN Specialist to sort out what is going on. It will be important to get the doctors to collaborate. Most doctors are not familiar with MPNs and how they can manifest. Your MPN Specialist can assist with helping other members of your care team understand MPNs. Of course, you can do this too.
All the best.
Hello I have for 40 years oftalmic migrain, first i start tu SEE unckees e with an eie, second in the eie i SEE like a Windows or miror broken third the opozite part of Head hurt me I don t know. when and Why ? Hematologust send me țo neurologist , he recomand me xibimer . Regards CATA
Ocular Migraine, Started having them about 20 years ago, saw the GP, he suggested going to see an optician, they suggested it was 'normal' and could be linked to food.
I attended and MPN forum in Birmingham and I raised this issue and my thought that Ocular Migraine and linked to PV, the 'expert' said it was not..
I'm still convinced it is,, I don't get them as often..
Aspirin and Pega 135 recently gone up from 90..
I have visual migraines quite often, not necessarily after sleep. Sometimes I think they are related to caffeine but I also have them when I haven’t had coffee. There’s no pain but recently I’ve had itchy eyes.
Hi
I used to get ocular migraines for few years occasionally before diagnosis opticians never made no fuss about them they started to increase before being diagnosed , since asprin and venesection I don't get them anymore which has been 1 year, not sure which helped or both, I also get very bad dry eyes ,on waking up i immediately use eye drop which work there majic instantly and then they are fine, I did read antihistamine can dry your eyes out too i take this daily but the eye drops really do work for me
Ocular migraine was one of the symptoms that led to my ET diagnosis. I'd had them very, very occasionally years ago but was suddenly getting them on a daily basis. That, coupled with the fact that I was now also getting Raynauds-type cold fingers, prompted my GP to do a blood test. However, since I started treatment I have never had another one. The problem with my fingers hasn't resolved, unfortunately.
I had a very similar situation. My first PV symptom was migraine with visual aura. At first, they occurred every 2-3 months. As my blood got thicker and thicker, they became more frequent, eventually happening daily. After I was diagnosed and started with the phlebotomies, the frequency of the migraines became much less, but they didn't go away entirely. I still get them 1-2 times per month.
I've had migraines since I was 14; PV and Besremi both increased the frequency.
Nurtec and Aimovig have had an amazing impact on lowering my migraines. My eyes are always red when I wake up. I do two things for my eyes that have helped reduce redness and dry eyes at night: Before bed use Refresh eye drops (eye moisture) and I use Lumify for red eyes in the morning.
Red and burning face
Blurry eyes 
Dry sticky eyes.
