Would like to hear from others with PV who have experienced ocular migraines. What were they like? What did you experience?
The ophthalmologist thinks I may have had a couple of ocular migraines a few months ago. I experienced no pain, but a sudden increase in "glare" obscuring vision. Lasted 2-3 hours and went away on its own. (I thought it was a flair of dry eye). This came up because of something similar but more severe that just happened in the last week. I experienced a significant increase in diplopia (double vision) for a couple of days, It cleared but then I experienced 24 hours of palinopsia (seeing retained visual images that were not there). I was seeing repeat images of something recently seen and old images that would be expected to be in my visual memory. It was rather alarming.
I did of course go see the ophthalmologist immediately. They got me in immediately when I called. The doc confirmed that the palinopsia (and likely worsened diplopia) were a neurological issue. Likely related to the brain tumor and surgery. I am set for a MRI and appointment with neurologist and neuro-ophthalmologist next week to see if we can get to the bottom of this event.
What would be helpful in sorting this all out is to know what others have experienced with ocular migraines. I suspect there may be more than one thing going on. I am particularly interested to know whether anyone has experienced ocular migraines without pain. Also - what other visual symptoms did you experience during the ocular migraine?
Thanks to all.
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hunter5582
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Before being diagnosed I experienced these for several years.
I described it as starting with a pin point of lights, almost like i had looked directly at a bright light, that expanded across my vision with a kaleidoscope effect.
They tended to last about 20 minutes, and while I won't say I suffered pain, i often did feel a numbness in my head for a while after.
I tend to find these came on more if i was tired, or I feel if I had maybe had more caffeine than normal.
Since diagnosis, apart from a couple just after, and certainly not since I started on Rux, I have had no re-occurances of them.
I found the only way I could handle them was to just let them happen, close my eyes and let them do their thing.
I got exactly the same symptoms as you, ie scintillating scotoma etc... This medical condition is called: Acephalgic migraine ( a migraine aura without headache). I had it for 4 years and it disappeared after a few months under Pegasys.
Same. I’ve had these increasingly since I was in my mid 20s ... at least one a month, 30 minutes of blind spot that started centrally and ended up around the perimeters of my vision. Sometimes followed by a headache and occasionally sickness that could persist for a day or even two. I was diagnosed with MPN over two years ago aged 37 and I’ve not had one since taking the daily aspirin
Yes I used to get loads of these particularly during and after sports for years and would have to stop and rest as vision blurred. Usually took ibuprofen to try and prevent full blown migraine after which sometimes happened. Since being on rux and aspirin they occur a lot less frequently although obviously I can't do sport like I used to so less triggers.
Hello hunter - I had many episodes before diagnosis with ET (soz if you are not old enough to remember the old TV sets)! but it was like losing ‘horizontal hold’ - no warning, no pain but would stop me in my tracks + would just have to wait it out (though for me they only lasted minutes) once I went on aspirin I went from having 4 or 5 episodes a day to none! and have none since in the last 5 years. I hope your team work out what is causing them (my GP thought mine were caused by vein disruption through sticky blood) Very best Anne-Marie. x
LOL to old TV sets. I remember them well. Black and white - waiting for the tubes to heat up - rabbit ears that needed fiddling - and of course the horizontal and diagonal adjustments. Thanks for the great description and the chuckle.
Hi, I have too many red blood cells but negative to mutations so I’ve been rediagnosed with idiopathic erythrocytosis instead of PV. I suffer from ocular migraines about once a month and it has been put down to the IE.
I start with little flashing lights which move around, then my vision changes like looking through water or the bottom of a distorted glass. It starts in one eye, sometimes stays in that one or goes to both. I get headaches and feel sick but only had so severe a headache once that I had to lie down in the dark. I also have experienced words dropping out of line, letters going wavy, etc when reading computer screen and larger flashes of light even with my eyes closed.
They are not pleasant but I was assured mine were harmless but if there were any changes to go for a check up. Hope this helps you. I would be interested in updates on your progress.
Hi Hunter, so sorry to hear you have this. I wonder if it all relates? 30 years ago we moved to a house which was to be demolished but we took it on. Within a few weeks hubby heard that lots where he worked would be made redundant. I was at home with 2 v small children and suppose got unnecessarily concerned. I lost my sight twice which was very worrying. The doctor, never went back again to her, told me was what to expect in middle age!!!
Hope you are doing well it is not a nice experience is it.
It is very alarming to have such significant visual disturbances. I think there may be two things going on. Maybe ocular migraines that are PV related. The palinopsia is definitely something different - related to the brain tumor and/or brain surgery. At this point I do not know why this would show up a year out from the surgery. We will hopefully get it figured out ASAP.
Hi , I'm JAK2 negative with high red cell count ,haematocrit and haemoglobin.
I have had ocular migraines for over 15 years, it starts with mild flashing lights then increases in intensity accompanied by what I call the zig zag C's ,actually a back to front C with zig zag edges that jumps about then the full on scintillating scotoma kicks in .Flashing kaleidoscopes of yellow,red,pink and orange . It lasts about 20-25 minutes then leaves me feeling a bit dull headed ,a bit nauseous and not quite with it.
I'm used to it now although it was very scary at first so I just sit back and enjoy the light show.
I find it comes on if I'm stressed or had a row with someone so perhaps a sudden boost in bp triggers it
Hello Hunter, before starting on Clopidogrel I too had problems losing my vision. It would start in one eye in the corner, move to the rest of my eye and then into the other eye. It was very frightening and my worst fear was it would happen when driving. It lasted for up to twenty minutes, no pain but I would have a headache and feel very tired afterwards. I have ET jak2, it is treated with Hydroxycarbamide and Clopidogrel. Hope this helps.
Yes, I had occasional scintillating scotoma attack’s before my diagnosis. My haematologist actually asked me this question at my first clinic appointment, so maybe expected in the MPNs.
My experience of these attacks are as follows; it would begin as Paul_1971 describes, a ‘pin prick’ of light obscuring my vision, this would then extend to a peripheral semi circle of kaleidoscopic flashing light until the full peripheral vision is flashing. I never had any headache or after effects, and it usually lasted around 10/15 minutes. Also, more likely to occur when heart rate was up, after prolonged physical exertion.
I don’t get these anymore; treatment with aspirin and hydrea has clearly helped.
Hunter, same with me. I started having ocular migraines about the same time that I believe MPN began. Dr Spivak mentions ocular migraines in one of his published articles. I can send you a link if interested. For me, these are just a bit annoying and don’t last long. I started low dose aspirin to see if it helps. Best to you!
The paper is titled “Myeloproliferative Neoplasms”. Appears in New England Journal is Medicine. Sorry I’m not sure how to attach article in this Health Unlocked
I dont read any important in this article about eyes issues. He writes: '... In both PV and ET, aspirin is usually effective for microvascular episodios such as ocular migran, transient ischemic attacks, and erythrolelalgia due to hyperactive platelets' 2177 page
I did find this article. Very interesting. Was unaware of this specific manifestation. Makes sense that an ischemic event in the brainstem ocular nerve nucleus could case this problem. Thanks for pointing it out. I had a MRI today. Perhaps it will show something.
'Chemotherapy has traditionally been used to control intratable pruritus and ocular migraine, as well as extramedullary hematopoiesis asociarte with myelofibrosis, but it does not avert the need for splenectomy or splenic irradiación. Now, there are two effective, nongenotoxic therapies to address these problems: ruxolitinib and interferon'
Hello. I’ve (28 female) recently been experiencing a flashing line in my vision everyday several times a day around 15 times or more. Underlying headaches most of the time (not debilitating but not pleasant) for around 6 weeks now. Some dizziness. The last few days in particular I’ve felt almost like passing out and some nausea now. I’ve asked to be referred to Neurology but was told the waiting list is over a year. I’ve just been prescribed beta blockers. What else can I do? I’m quite concerned. Anyone else seen flashing lines with dizziness as an ocular migraine?
That does sound like one of the types of scintillation you can get with migraine activity. I read that propranolol is the beta blocker that works best for migraine prevention. There are other meds used to treat migraine as well. (CGRP inhibitors, certain anti-seizure meds, and others) Migraines are associated MPNs, so perhaps your hematology team can help.
Note: there are two types of ocular migraines. Retinal migraines (based in the eye) and visual migraines (based in the brain). The brain-based migraine might also be called migraine with visual aura. Retinal migraines will often occur in one eye. Visual migraines most often affect both eyes. I would think that an ophthalmologist would be able to detect signs of retinal migraine. Please also note - I am not a doctor and have just learned more about visual migraines since I started have issues. There are potential issues involved in your situation that need to be addressed by the right medical professionals. Definitely including a neurologist.
Your symptoms are significant and concerning, I do not understand why it would take a year to get seen when you are so highly symptomatic. What you are describing should make you a high-priority case. While it sounds like migraine activity, I would not assume that is what it is. You are right to be concerned and do need to get to the bottom of what is going on. I would think a MRI would be in order ASAP. Assertive patients get higher quality care. Passive patients do not. I think it is time to get very assertive.
I have been learning more about this myself. There is a distinction between retinal migraines and visual migraines. Retinal migraines are based in the eye. Visual migraines, also called migraines with visual aura, are based in the brain. Retinal migraines typically affect only one eye. Visual migraines typically affect both eyes. I believe retinal migraines also may have more spotty scotoma (loss of vision), where visual migraines can affect the entire visual field.
The migraines I experienced were acephalgic (silent) - no pain. I also experienced hallucinatory palinopsia on one occasion, which was quite bizarre and more than a little disconcerting.
The uptick in migraine symptoms you are reporting is concerning. I would definitely see your providers ASAP. You may need to see a neurologist who specializes in migraine as well as an ophthalmologist and your hematologist. There are other treatment options for migraine, but you need to know what kind of migraine to treat for. Some people do respond to pain killers alone, but other need a different kind of treatment. CGRP Inhibitors are effective to prevent certain types of migraine and are well tolerated. There are some anti-seizure drugs like Topamax and Lamictal that can be effective for some migraine activity, but they have more significant side effects (which is why I did not want to take them). If the underlying cause is your MPN (known to be associated with migraine) then your MPN treatment plan may need to be adjusted.
Do please follow up as soon as you can. No one should be in pain when it may be prevented. It is important to understand why this is happening and address it effectively. Please let us know what you find out. Until then, all the best.
Hope you get answers soon. You do have to talk to docs to do so in this case. Definately see an ophthalmologist as well as a migraine specialist/neurologist. PCP likely can't help with this. FYI - if you are having ocular migraine on just one side, that is something to be sure to be clear about - it makes a difference.
Ocular migraines can be one of the warning signs for PV and other MPNs. Treating them requires working with a MPN Specialist and some type of eye doctor. Depending on what you are experiencing, it could be an ophthalmologist or a neuro-ophthalmologist. It may also require consultation with a neurologist who treats migraines. My visual migraines were not related to the PV. They were the consequence of a brain surgery. I needed consultation with all three of the above listed specialists and the MPN Specialist. I am fortunate to have responded very well to a CGRP-Inhibitor (Ubrelvy), which I use PRN. Even more fortunate, I rarely have the migraines any more.
There is a distinction between Ocular Migraines and Visual Migraines. Ocular Migraines usually occur in one eye and are based in the retina. Visual Migraines typically affect both eyes and are base in the brain. PV can cause both types of migraines as a microvascular symptom. The good news is that there is effective treatment options for both types.
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