Hi all, I haven’t posted for a while but am juggling with a few health problems just now. I was advised to discontinue my Hydroxy 500 mg ( alternate days) by Haematologist when I got Covid in August, which was very bad and I ended up with 2 days in hospital. I re-started HU a few days before I tested Neg. as I began having the Migraine Aura several days. Since then phone consult with Haemo was satisfactory. Platelets 457 . However I am experiencing Migraine with Aura a lot and although I’ve been a Migrainne sufferer since a teenager the Aura always took the same course, pinpoint of blindness one side gradually becoming semi circle of shimmering light, followed by headache on opposite side of head and nausea. Twice recently I have experienced an alarming confusion, difficulty bringing words from memory when trying to speak. I am wondering if ET could cause this new frightening symptom. Are they connected? My blood pressure is erratic also. I haven’t discussed the Migraine confusion with Haemo Dr. as it hadn’t happened when speaking to her, though I did say I was getting Migraine. Her letter to GP just says I had headaches. I would be grateful for any thoughts on this and if anyone suffers from Migraine. Thank you. Hope everyone is as well as can be. Regards Fran.
E.T association with Migraines?: Hi all, I haven’t... - MPN Voice
E.T association with Migraines?
Hi Azaelea - I would suggest you speak to your haematologist and see whether this could be due to platelet or vascular issues? I have PV rather than ET but have had similar experiences to you with speaking difficulties and aura. Some of this is described under my previous post 'Migraine aura and aspirin v clopidogrel'.
A few weeks after what was concluded to be migraine aura or TIA last summer I had a (thankfully v small) cerebral stroke. It was only because I'd had the weird aura (during which I couldn't read or understand words - a few previous ones had involved the memory / word recall issues you describe) that I had MRI; the stroke had occurred in the interim (due to it's location my symptoms of that would just have been dizziness).
The Stroke consultant told me that there was a 'blood disorder' that can be linked to stroke in relatively young patients and sent me for Jak2 testing, leading to PV diagnosis. Since being on antiplatelet meds (aspirin, then clopidogrel) I haven't had an aura. Could be coincidence as I previously had a 15 month gap prior to medication, but it has now been 14 months without migraine aura (although I've had some bad headaches) so I think the antiplatelet meds have made the difference this time. Both Stroke and Haematology Consultants agreed that could be why I've not had them recently.
I see you are already on aspirin so my theory could be a red herring. I was previously told that the language issues can just be migraine aura but it's worth asking in case a med tweak could help you; the aura used to worry me so not having them is v welcome.
Hope you get it sorted out.
AS RoundTheWorld says, a TIA is a real possibility with those new worrisome symptoms. TIA's often are a fleeting warning so not having symptoms while at Dr is not surprising. It's worth asap to discuss with your GP and maybe some imaging tests (MRI etc) I had TIA's in hindsight before I started cytoreduction, maybe your time off HU is related.
I got a brain MRI and others after my Last Dose of IFN episode bec of brief paralysis, head injury, eye flashes and other bad things. No brain damage was found but I'm glad I did the test.
The symptoms you are experiencing need prompt and thorough assessment. Migraines are associated with ET but can occur for other reasons too. Migraine can also be associated with post-COVID issues. The migraines associated with ET are a microvascular issue. As the others suggest, what you describe would also be consistent with a TIA. This needs to be treated as an emergent issue. Proper treatment will require an accurate diagnosis.
Please let us know how you get on.
Suggest you try and see either your GP today or go to A& E for a check up. Better to get checked out asap then you will either get the treatment you need or it will put your mind at rest.
Hope all goes well !
Just sending you a big hug and hope you can get the migraines sorted.
hi. I used to have migraine with aura on a monthly basis and as a child I had one or two that caused the confusion and language disruption so it might just be a type of migraine - but I would call a doctor asap to rule out the possibility of a TIA or small stroke
I would definitely agree with the others, i.e., that you seek urgent medical attention as this sounds serious. However, I have had these symptoms which Prof Harrison said may be due to perimenapause. Obviously that depends on your age etc but I would reiterate the need for swift medical intervention. Good luck.
Hi azaelea, like you i have suffered severe migraines since i was 14. I am now 73 and was diagnosed with ET in 2020 and was prescribed baby aspirin until I started taking hydroxycarbamide 3 weeks later. i was having migraines up to 3 times a week and was taking zolmitriptan as nothing else would touch them. My platelets were in the 800's when i was diagnosed. I am convinced that the aspirin had a huge impact on my migraines as over the next year they virtually stopped and I haven't had one now for 2 years. I occasionally get flashes in front of my eyes and as long as i sit down and chill out for a bit I'm okay. My platelets are now in the 3 and 4 hundreds and I take 1 hydroxycarbamide monday to friday and 2 on saturday and sunday. I'm no expert but I cannot believe that the daily aspirin has had such an impact on me.
Hi there, I also had visual migraines for decades, and though my platelets were high (ranging 550 to 750 then) during that period also, I was told the connection was not assured. When I turned 65 both high platelets and HCT pushed me toward an ET then PV diagnosis, and I started taking Besremi. Early on in this intervention, when my counts were still high, I had a few scary episodes that my oncologist thought more connected with migraines than strokes. A few times when driving or concentrating on a complex movie plot, I had a very brief and scary black out of vision, like a curtain closing then opening again. I also had some varied optical effects in early treatment. I'm still on Besremi, now trying the lowest dose possible to see if it keeps HCT and platelets down. (My red counts never seem to improve, but that is not followed with much concern.) When my platelets fell, so did visual migraine episodes. As Ozziepig says, it might be due to daily aspirin as well.
Sorry to hear you have been unwell. I don't have experience of migraines (thankfully), but I would certainly be keeping my haemotologist up to date. I hope you soon get the help you need.
Hi Fran,
Only just read this.
I’m in a health issue with migraines, planning on posting here but waiting for a scan and a better understanding of what’s happening to me. But like others here wanted to add the urgency of what’s happening to you.
My haematology team (Guys under dr. Harrison) have told me if I experience a migraine with loss of cognitive skills to phone 999 emergency! I’ve had two in the last two years. I’m currently experiencing what I call cluster migraines.
Have had migraines since 14 years old (63 now) have fluctuated hugely with frequency over the decades. Last year the cognitive loss with one of them worried my team. But in April, first time and I had multiple migraines over a period of days. Back throwing up (vomitting) which I hadn’t done since being a kid. I’m classic aura to begin with. I get a break of days or weeks then another bout. Lasting anything from 3-9 days. This has totally floored me as often I get more than one in a day, one time having one every four or so hours! I run through these questions to myself to make sure I’m not cognitively impaired.
Fran I feel for you my heartbreaks for all the sufferers here. I’m waiting for another trip to the neurologist department and a scan as I said as well as an answer to what pain relief as I got told I could only take ibuprofen rarely and never often, so with multiple migraines I’m defenceless!
On a positive note, I describe my migraine free time (like right now, I’m 3 weeks migraine free) as DELICIOUS!!😁
All my love
John
Hi, thank you for your reply which I have read with interest. I sympathise with you on reading what a dreadful time you’re having and the length of time the migraines are lasting with the throwing up for days ! I saw my GP yesterday and he referred me to T.I.A clinic at hospital who rang today to fix an appointment tomorrow. He tested me and it could be the Migraine but we want to make sure . I’m hoping they will do a scan and will post the outcome when known. It certainly helps a lot to be able to share experiences here with our fellow MPN sufferers. Really hoping your “delicious” migraine free time continues as long as possible and we all find an answer . Regards, Fran
100% Fran! 100%!!
hi
I have ET, migraines since very early teen. With auras and have the word blindness and confusion thing too as well as a numb side of my face. My GP sent me for an MRI, all fine. Used to take Sumatriptan now on a low dose blood pressure medication daily alongside my daily low dose aspirin. Still some issues with migraines but much less frequent . Still issues with word blindness- which for several years I put down to Menopause but I now think it is ET. Not a good thing to have as a teacher stuck infront of a class of teenagers!!!
Take the advice here, go and have it thoroughly checked.
Hoping all is fine and wishing you well.
Feeling low and fed up
1st Time Visual Aura
New ET member
