Twitching nerve in eyelid and slight one- sided migraine -like headache a symptom of E.T.?

[azaelea]

I am experiencing these symptoms recently over last couple of weeks. I have always suffered with Migraine but grew out of it latterly and haven’t had bad attack for several years. I’ve been on Hydroxy 500 mg daily since being diagnosed with ET 4 years ago. Can this be narrowing or blocking of small blood capillary? Fran

[EmeraldA]

Hi Fran, this may be related to ur ET. I can say that before my ET diagnosis I had a twitching eye lid for about 9 months. It eventually went away. I do also get twitching muscles from time to time too. Bx

[azaelea in reply to EmeraldA]

Thanks EmeraldA. I have telephone appointment with Haemo on 9 th April and I’ll ask about this. My blood counts were all ok last time, about 6 weeks ago. Regards, Fran

[EPguy]

I've had occasional twitch like that for some time. It lasts for a few minutes. I think it predates my MPN, but I had Et well before my Dx so maybe part of it.

[Pte82]

azaelea, of course your Doctor is your best source to turn to especially after experiencing this for weeks. As just an opinion, your eye twitch and migrain may benefit from additional magnesium. Magnesium also keeps platelets from sticking together like aspirin does. It also is needed to activate vitamins B1 & D which , if deficient, can result in eye twitch. All the B vitamins work better together once B1 is activated because it can then activate B6. You may find a fast melt sublingual methylcobalamin B12 is the best way to benefit from it

pubmed.ncbi.nlm.nih.gov/213...

ncbi.nlm.nih.gov/pmc/articl...

[hunter5582]

As EmeraldA stated, that would be a yes to related. Specifically, that sounds like an ocular migraine (retinal based 0 AKA retinal migraine) as opposed to a visual migraine (which is brain based). These can be MPN-related. Note that migraines can be acephalgic (silent/painless).

Here is a bit if information on this you may find helpful. allaboutvision.com/conditio...

webmd.com/migraines-headach...

ncbi.nlm.nih.gov/pmc/articl...

I started experiencing visual migraines after the brain surgery (not MPN related). I have experienced scintillation, scotoma, diplopia, and illusory and hallucinatory palinopsia. The latter is not nearly as much fun as it sounds like! Fortunately all my migraines have been painless, though the impaired vision is troublesome when it occurs. Fortunately this is now very well controlled.

The good news is that when your situation is properly diagnosed, you will likely find a good treatment plan. I would suggest scheduling an appointment with an ophthalmologist in addition to seeing the MPN Specialist. You likely will need a team approach. It is helpful to understand the terms used to describe migraine symptoms. You can better speak to your treatment team that way.

All the best my friend.

[azaelea in reply to hunter5582]

Thank you so much Hunter once again for your thoughts on the eye and migraine problems I’m having . I have read the three articles you posted and the first, with photos, describes the Migraines I used to get exactly. I’ve never seen it so well described before. This time it’s more the flickering eye nerve and I did have one episode with Aura as described a few days ago. This didn’t leave me with the old symptom of searing headache on opposite side for 24 to 48 hours as always experienced from my ‘teens throughout until about 60. However since the aura I’ve had slight pain in left side of head especially when bending down. I’ll be making an appointment at the Opticians this week and discuss with Haemo on 9th May. Thanks again. Hope you are keeping well and also hope your Mother has recovered. Kind regards, Fran

[hunter5582 in reply to azaelea]

Glad the articles helped. My own situation is a bot different as it regards the visual migraines since for me it was related to the brain surgery. It still took a large team of specialists to sort it all out, including: NF Specialist/Neurologist, Ophthalmologist, Neuro-ophthalmologist, Orthoptist, and my usual MPN Specialist-hematologist team. It was like a big "ologist" party! A party I would have just as soon have missed. W did get it all sorted and I have been very successful using Ubrelvy (CGRP inhibitor) to control the episodes. hey have slowed down considerably in frequency and intensity.

Since you have a history of previous migraine, I would definitely involve a larger team in sorting this out. You do want to be sure you accurately assess what is going on. Sounds like time for your own "ologist" party. Hope you get it sorted out ASAP.

[Inca]

Hi Fran,This is a prob for me often,sometimes feel I am watching an old Chaplin movie!!! I am P V 12 yrs Jakavi now ....My eyes are well cared for by a 'top' opthalmologiste,I need specs for my work as a sculptor a lot of fine detail needed & concentration.I get get the twitching when my eyes get tired.Just the left & the annoying pain & discomfort,a windy day if I forget to put big dark specs on just for a moment will also start it off. Stress too.,is another factor most definitely in my case.So I guess there are many causes as well as our MP N.Will be interested to see how many posts you throw up ! Hope yours will soon cease ,it is so annoying.Best wishes .Sally

[Threelions in reply to Inca]

HiNot related & cheeky to interrupt a thread but very interested to know what you sculpt. (I m an art enthusiast 😀)

[Inca in reply to Threelions]

Thru my long career many things commercial & private.Mostly tho all animals ,horses,dogs ,hounds,wild life cast in bronze .P V slows me up a bit now of course & Covid knocked expos ,still busy in my studio ,love my work.😄

[azaelea in reply to Inca]

Thank you for your thoughts and input,Sally. I’ll post again eventually when I hopefully get some answers.

[Inca in reply to azaelea]

Will be interested to know the answers. Hope it goes well for you Fran,so many odd things happen with our strange maladie .Out of interest ,I am twitching today...it's hot & I keep out of hot sun..the strong sunlight was the trigger today I think,not a bird enthusiast sort of twitching !!! I do love watching the birds tho ,always a cheer up. 😄

[Wyebird]

Hi you’ve just reminded me that I get a twitching eyelid from time to time. Haven’t had it for at least a year now I didn’t think it’s ET related. ( I’m ET) if it bothers you it’s worth mentioning it to your heamo though

[azaelea in reply to Wyebird]

Thanks for your reply, Wyebird.

[Threelions]

HiI occasionally get a twitching nerve in my eyelid. A good friend is a medical professor who specialises in eyes. He told me it was fairly common and nothing to worry about, although, as with all things it’s right to mention to your consultant.

With regard to migraines I used to suffer terribly with visual migraines in latter part of my life. They simply stopped (touch wood) post diagnosis & on commencement of my treatment (interferon). That made me convinced there was a connection with my et although it’s nigh on impossible to know exactly what triggers a migraine as I don’t think even experts truly know.

Again best to mention all to your haem/consultant.

In the meantime I wish you all the best .

X

[azaelea in reply to Threelions]

Thanks for your reply and I’m interested that you suffered the dreadful migraines too. No, they just don’t seem to know what the triggers are. Glad yours have stopped and wonder if Interferon has helped with this. I’m on Hydroxy and feel it might NOT help!

[Foodies]

That is really interesting, especially all the comments. I have had a problem with left eye for many years and see my eye specialist for treatment. I never thought of it as related to ET as I was only diagnosed with CalR+ in 2019. My haematologist had done Jak2 tests several times during the years as my platelets were over 1000 constantly. However I was always negative. As I said in an earlier post had ITP since 2004 and spleen removed in 2005 , so I. Had a platelet count of 20 at one stage! I have appointments with both specialists in May so will raise the issue. Thanks for all the support in this group. Enjoy Easter break.

[azaelea in reply to Foodies]

That’s interesting. I’ll let everyone know if I find out ET is the cause of eye problems. Happy Easter!