Silent Migraine

[Hamburger21]

Does anyone one experience this with a mildly elevated Platelets

[cmc_ufl]

Yes. My natural platelet count is 400-450. I experienced scintillating scotoma (without headache) 3 times this year. Lasted ~10 min each time. Sometimes had a minor, dull headache after, but never a migraine-level headache.

[Hamburger21 in reply to cmc_ufl]

Thanks for your reply, my platelets seem to be around the 550 mark but don’t have a exact diagnosis for this . I have experienced the same type of visual disturbance and they only happen occasionally

[cmc_ufl in reply to Hamburger21]

I am not sure what causes it. Never happened before this year, but had it 3 times (December, May, July). GP told me there’s many causes for it, nearly all benign. Yes, it can be a symptom of ET, but also many other things. Hard to say what the cause is.

[Borage in reply to cmc_ufl]

My platelets were 250 in October, down from 293 in May, on the same HU as usual, 1,000 mg for six days a week. I have a couple of silent migraines out of the blue this month. They start with a wedge of sparkly diamonds and progress round to complete a circle, very pretty but no good for central vision. Then they go away, about an hour in total.

Nothing compared to real migraines.

[Anag]

Hello hamburger!I wrote about this a couple of years back. Many answered me. I got silent migraines at the onset of my ET. When the platelets got high, I was getting them often. Since fixing up my body through immaculately healthy eating, curcurma, CoQ10, Mg, etc proper amalgam removal, constant liver detox, etc. , the silent migraines are a thing of the past! Haven’t had one in over 2 years! At the onset of attacks,I always took a baby aspirin on top of what I usually take.

I’ve been cleaning up my body fir 4 years.I’m 56 It takes a many years to undo the damage that has been done by the modern lifestyle to our bodies. Worst of all is our food intake and cleaning agents at home!! All is now banned from my home. 😁

[katiewalsh]

I’m not much help. I get them regardless of my platelet levels. Katie

[Mustang50]

I was told I had silent migraines before being diagnosed with ET then PV, but my symptoms were very much like a TIA speech went briefly, dropped mouth one side, foggy brain, had two scans never showed anything although these were a month & longer after it had happened, has anyone else experienced this?

[Riviera]

Hi, yes I used to get aura migraines but no pain. Since diagnosis and medication I haven’t had one since. 😊

[Hat3]

Same as Riviera above. In fact the aura migraines were one of the factors that I went to the doctor about that led to a blood test and diagnosis.

[Cotswoldgranny]

Yes they thought i had TIA but upon further investigations they found I had ET

[Hamburger21 in reply to Cotswoldgranny]

Hi thanks for your reply I am curious about it as I haven’t been given an ET diagnosis I have had all the tests but they are all negative . I’m just being monitored as no reactive cause has been found either but continue to have high platelets.

[MistyBlue2]

Hi.Yes, I have them - although I'm more inclined to say mine happen more often with high HCT, than platelets.

Had them before dx when my HCT was 61, then they went away after treatment.

[Uzza]

Yes, I do...

[HazeBlue]

Yes it’s quite common. When I get it I know I need to rest for and hour or so till it passes. I gave ET jak2 in Hydroxy and aspirin.

[Baimead]

I suffered with Silent migraines and double vision episodes for 2-3 years believing it was vestibular migraines. After a very lengthy diagnosis journey, in January of this year I was diagnosed with ET. Daily aspirin solved my symptoms within 3 days! I was told I was having mini strokes and clots. I’m now on pegasys interferon and aspirin. The diagnosis changed my life for the better. I hope you get your answers and feel better.

[Hamburger21]

Thanks 👍

[ggrana]

My platelets are a million and that’s on three hydroxureaus a day and I don’t get those headaches, hope you get to the bottom of it and feel better soon.

[hunter5582]

Many people with MPNs do experience migraines. Headaches can be due to the MPN, the meds used to treat MPN, or unrelated. There are different mechanisms which the ET could cause a headache. While what you are describing is silent, the mechanisms of silent (aka acephalgic) migraine are the same. google.com/search?q=mpn+and...

For those who experience silent visual migraines there are two types: Ocular Migraines (aka retinal migraines) and Visual Migraines. Ocular Migraines are based in the eye/retina, typically occurring in one eye only. Visual migraines occur in both eyes and are based in the brain. The etiology of each type is different. Here is a bit of information.

medicalnewstoday.com/articl...

migrainepal.com/migraine-wi...

allaboutvision.com/conditio...

If you experience palinopsia (illusory or hallucinatory images) then it is clearly an issue based in the brain. Here is a bit of information on that.

eyewiki.aao.org/Palinopsia

I get the acephalgic (silent) migraines with visual aura, including palinopsia. In my case related to brain surgery for a tumor. Magnesium supplementation has been helpful in preventing incidents. I have found Ubrelvy to be highly effective for breakthrough incidents. Ubrelvy and the other CGRP inhibitors are a significant breakthrough in migraine treatment as they are very effective and have very few adverse effects.

online.epocrates.com/drugs/...

Based on what is actually going on, you will need to consult with a team of your MPN Specialist, a Neurologist who treats migraine, and an ophthalmologist. You may also get referred to a neuro-ophthalmologist. Since the symptom can be rather bothersome, it is worth following up as needed.

Hope you get answers soon.

[Lola367]

Yes I had silent migraines for a few years before I was diagnosed with ET earlier this year. But since diagnosed now that I am making an effort to stay well hydrated and on baby aspirin, I haven't had any at all...

[mhos61]

Yes, I experienced occasional ‘scintillating scotoma’ attacks for many years; exactly as cmc_ufl describes - no headaches!

When I was eventually diagnosed with ET (platelets 500). I remember the haematologist asking me had I ever experienced any ‘visual disturbances’. I must say, I wasn’t convinced of the connection, as both my husband and a work colleague (no MPN) also experienced the same visual disturbance.

I have been on hydrea and aspirin since diagnosis five years ago (platelets 320/40)). Interestingly, I haven’t experienced any further attacks. So, I think I can safely say ET was the cause for me.

My thinking is, it’s not just about platelet numbers, but about their quality too, such as how sticky they are.

[Hamburger21 in reply to mhos61]

Thanks 👍

[nightshadow]

Yes, I would get them almost every month, or more if a forest fire comes close. Since my platelets have been controlled I haven't had a single one.

[Plavers]

Hi Hamburger21 - (Hungry already) Before I got my diagnosis of ET I was having lots of aura migraines, then I had aTIA (transient ischaemic attack) or Mini Stroke, the hospital put me on Apixaban after which I had lots of Blood test and thanks to the persistence of my great GP I finally got a verdict of ET (Essential thrombocythemia) and I'm on Hydroxycarbamide 500mg since starting medication the Auras have almost disappeared. They used to worry me quite a lot so I'm relieved not to get them. I've put in the full name of all the Medications as I must admit I get confused at some of the posts when people use only Abbreviations eg: PEG? I'm not really sure what that is.

[Hamburger21 in reply to Plavers]

Thanks 😊

[bjay22]

Not me, but in all fairness, I’m one of those blessed weirdos who never has headaches.