I just was curious if anyone with ET has experienced migraines with auras? I have not been diagnosed but have an appointment with a hematologist in a few weeks due to having slightly elevated platelets the highest result being 460.
I am 28 but have suffered headaches and migraines since I was a child. However only the last few years I have begun having migraines with auras. They begin with my vision going blurry and what seems off centre, I get numbness and intense tingling on one side of my body including my face and tounge then I loose my speech. My family have said I seem to be very confused and talk complete nonsense and don’t know peoples names etc. The first time it happened was terrifying and an extremely painful headache follows.
Has anyone experienced anything similar?
Thanks 😊
Written by
kase28
To view profiles and participate in discussions please or .
Hi Kase28 I have not experienced anything like you describe. But if it was me l would try and see a doctor as soon as possible and not leave it a few weeks. Let us know how you get on
I have seen my GP who is very thorough in regards to my migraines and I have been told this can just happen to some people. They don’t happen very often either it’s only happened maybe 5 times. I was I guess just curious if anyone has had something similar to see if maybe it’s linked to my platelets as doctors have never found a reason.
The answer is yes to migraine with aura, though this is new for me. I have been experiencing occasional silent migraines with visual aura. It starts with scintillation on the edge of my visual field, followed by scotoma across my entire visual field (looks like looking though foggy glasses) or double vision. I recently had an incident of hallucinatory palinopsia as well. My situation is more complex in that last year I had brain surgery for a tumor in my occipital lobe, along the pathway of the optic nerve. At this point, it is not clear how much is related to the MPN and how much is just the brain.
Migraine is known to be associated with MPNs, so
you will likely hear from other MPNers about their experience with it. The good news is that it can be treated. PEGylated Interferon can help when the MPN is involved in the migraine (per my MPN consultant). There are other treatment options for migraine. CGRP inhibitors are effective for some types of migraines and well tolerated. There are some anti-seizure meds that also work for migraine (e.g. Topamax, Lamictal) , though these tend to have more side effects. There are other treatment options as well. Given what you have described, you definitely should see a neurologist who specializes in migraines. You will need to make sure the neurologist and hematologist collaborate on your care. You really will need a coordinated approach.
I hope you get answers soon. Please let us know how you get on.
Yes, we have a family history of migraine and I didn't escape. Once I went blind in one eye for about 15mins, Very scary!
When I was diagnosed with ET they were reluctant to agree that it had any impact on my head and vision because of past history of migraines. Now however my haemotoligist seems to accept that this is different.
Yes I do. Similar experience starts with aura, sparkles in vision that restricts vision, reduced cognition, then headache. Paracetamol helps. However, mine have only started in the last year - 3/4 years diagnosed with ET triple neg. Untreated my platelets go over 1000, but under control and within The 250-450 range on pegalated interferon. Still get the migraines .
Hi Kase...absolutely! Apparently it very common in ET. My migraines started in my forties. I am now 66, or will be on the 18th November. I am also JAK2 +ve.
Yes I had silent migraines with aura for about 2 years prior to my ET diagnosis. Also had one episode where I lost vision in one eye for about 20 mins which I was told was a TIA. Now take aspirin daily and rarely have them. Good luck with your appointment and hope you get your symptoms resolved.
Yes, optical migraine (aura) is really my only symptom outside of apparent low immunity to infection. The good news is a low dose aspirin has virtually eliminated the migraine. I am ETJak 2 positive, but bone marrow sample showed evidence of ET and PMF.
I have suffered migraines with aura since kid. Noticed a change 5 years ago, they turned more silent and started often during exercise. Last Feb I was diagnosed with ET and been on aspirin since then. Aspirin has reduced frequency greatly, have had only one attack so far!
What you describe sounds scary, and I think it deserves proper examination.
I've had ET for 15 years & have had the occassional migraine with aura over the years. I was diagnosed after I started getting lots of headaches & migraines. However 3 years ago I started with a migraine but then got a tingling sensation in my hand & arm & couldn't speak properly. Thought I was having a stroke. It happened at work so they called 999 & a paramedic turned up. 20 minutes later it had worn off so just went home. I started getting the episodes quite frequently & after some research suggested to the GP that they were hemiplegic migraines. They come on when I have been very stressed. Was put on beta blockers which seem to have stopped the migraines, although my stress levels have reduced substantially in the last year.
Thank you for your reply. I also thought I was having a stroke the first time it happened which was scary. I am prescribed the drug Rizatriptan and it does stop my migraines and severe headaches. I am just looking forward to my appointment with the haematologist to see if maybe there’s finally a reason for them.
Hi. Yes! ET jak2. After starting aspirin when diagnosed I haven’t had them for 11 months. Before maybe omce every three months and sometimes (if stressed) multiple during a week. Aspirin is a miracle for me very high platelets (1150), no drugs except aspirin, 43 years old. Ask your doctor about aspirin....
Yes kase28. I have ET Jak2, PMF. I get a mild headache above left eye with double vision, sometimes a pixellated effect or a black hole seen to left side (with both eyes when looking to left, not just a blank with left eye). About 20 yrs before ET diagnosis, I did have a 2 hour period of complete blindness to left side, followed by horrid night of vom/runs. No headache and Doc said was migraine aura.
Hi Kase, I have had something similar. I was diagnosed with ET about 2 years ago at 34. When I was 28 and again at 32 I had an incident that I THINK was a visual migraine with no headache. I had confusion, classic visual symptoms (wiper blade greying and spots), and speech aphasia which was terrifying. I was hospitalized for both incidents, but by the time I got there and checked in it was mostly ending. I was not diagnosed with an MPN at the time, so they chalked it up to a TIA due to factor v clotting disorder and birth control. The neurologist said he thought it was more likely an aural migraine. The second time, I pretty much knew what it was but I got checked out anyway and another neurologist agreed he was pretty sure it was an aural migraine too. Of course, we will never know because the MPN could cause a clot which in turn could cause a TIA. But everyone seems to be pretty confident it was an aural migraine due to the MPN.
I had the eye aura’s without headache on numerous occasions about 15 years on and off before my ET diagnosis. I still get very occasionally. I put it down to stress, but have been advised it does happen with ET.
kase28, low magnesium levels may be unable to change thiamine to it's active form. Compare each of your symptoms with thiamine such as "confused talk thiamine" or "blurry vision thiamine" The link below has a migraine connection with thiamine. Other B vitamins are also involved but so is magnesium. Search on "krispin magnesium" for that info site.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
very high platelets (1150), no drugs except aspirin, 43 years old. Ask your doctor about aspirin....
ET with constant silent migrain symptoms
Ocular Migraine and PV
Does anyone else experience visual (ocular) migraines?
pegasys and migraines
