Hemiplegic Migraine and memory loss

[Toysoldier]

Hi. I was diagnosed last year with hemiplegic migraines after first being misdiagnosed with a TIA. I take sumatriptan which works well for me but I am having some serious issues with my memory, both short and long and have had for some time.

When they carried out a Brain MRI they found a couple of white matter lesions which they told me not to worry about as it wasn’t MS!

I have had my memory tested by a psychologist with RBANS tests, the last one a couple of months ago. He said my memory is fine but I struggle with names particularly and also feel like I’m living in a fog.

My migraines don’t seem particularly bad, but I get odd smells, tingling lips, pins and needles, odd feelings in my right arm when I get them.

I really feel like I am losing it big style, the only thing that keeps me going is that I seem to recover for a while and feel better.

Question is, is there anybody out there who has the same problem?

Any thoughts welcome

[Cally01]

Hi 😁 yup I do.

I have problems remembering names and my bank pin number, even my address😱

I get tingling and numbness in my lip, feels like a dental jag is wearing off. I get raynauds in some fingertips too.

I'd say it's all part of migraine disease.

Be well

[Toysoldier in reply to Cally01]

Thanks, much appreciated!

[Cally01 in reply to Toysoldier]

Your very welcome 😁 i know it's hard but try not to stress when it happens, it'll pass.

I feel like my brain is cotton wool most of the time but I'll get a day of clarity just out the blue and it's like " ohhhh i can be normal and think clearly"

Good luck 👍

[Toysoldier in reply to Cally01]

Thanks again. Have you ever “zoned out”? I was paying out some cash out a while ago and seemed to lose track for a few seconds. Awful feeling. Not had it since tho.

[Cally01 in reply to Toysoldier]

Yeah, i felt like i was taking a stroke up to 6 times an hr at one point, it was very scary.

I live 5mins drive from my work and i got a taxi home because i felt aweful, i took the taxi to a house i lived in 15yrs and was very confused. Felt really stupid too.

It was really scary 😣

Had to give up work until i get this under control.

[Cally01]

****15YRS AGO. Not where i live now.

[Toysoldier]

Wow, that must be really hard. You describe them as strokes - have you had a full investigation? Have you been off work long?

My biggest fear is dementia; I can deal with all the other stuff but not that. I was tested a few times for MS because of the pins and needles but it came back not confirmed

I live for those “days of clarity”!!

[Cally01 in reply to Toysoldier]

Yeah had migraine for 40yrs but they changed for the last 4yrs. Had all treatments and tests, all normal!! Whatever that is lol.

Cbd oil and tinted glasses are helping 👍

[Frodo]

I've had major improvement in those symptoms with B12 injections (look at the PAS website) and also a herbal anti inflammatory/anti platelet taken twice a day. I'm finally taking triptans and it's better with those too, but if I get a 'break through' migraine I will still lose time/memory eg when I go back to a task I was in the middle of before I had the migraine I can't remember what I was doing and have to start again.

Something else to look at is Hughes Syndrome/Antiphospholipid Syndrome which a proportion of migraineurs suffer from. At its worst it can cause strokes and miscarriages, but for some people very severe chronic migraine and the symptoms you describe can be the manifestation of it. It can be confused with MS and PA. It can also lead to micro clots which cause symptoms but don't show up on scans. Most GPs won't know much about it.

[Gambit62 in reply to Frodo]

B12 was my first thought as well when reading your post.

This is a list of symptoms - though they overlap with a number of other conditions

pernicious-anaemia-society....

and this is a link to the PAS forum

healthunlocked.com/pasoc

[Toysoldier in reply to Gambit62]

Thank you

[magirose]

Hi. Yes I get this and have migraine associated with an auto immune disorder. Do you hace other health issues ongoing which may seem unrelated?

With those kind of results I wouldn't really accept that it is migraine. Have you ever been tested for Lupus or anything like that? I had no brain lesions and have been scanned many times now. But I do have a similar migraibe pattern and I have a form of vasculitis.

If you have other issues going on like gut problems or joint pain or problems with your eyes I would consider an alternative diagnosis.

[Toysoldier in reply to magirose]

Hi. Thanks for your thoughts. I also have psoriatic arthritis with joint and muscle pains and a very high Uric acid count of 453. I’ve just had a load of bloods done with my PSA so I know my B12 is ok - I take it as a spray every day. My eyes are a little more blurred but the optician says they are ok. I’m not diabetic, have decent blood pressure and ok lipids. Sunlight does make me worse - maybe I’m half vampire!

[magirose in reply to Toysoldier]

Well your arthritis and sensitivity to light also make me think some kind of auto immune issue. I am not sure what kind if blood work ups you have done bit I wonder if you have looked at esr crp or ana and what they might show. Not definitive tests in themselves but can point to underlying auto immune conditions. Do you have dry eyes or just photophobia?

[Toysoldier in reply to magirose]

I also had a bad accident/incident in the Army which damaged my neck/spine. Could I ask what form of vasculitis? What sort of alternative were you thinking of btw? Thanks for your time.

[magirose in reply to Toysoldier]

I take it you have had scans of nrck abd spine to rule out any cause there?

[Toysoldier in reply to magirose]

Hi just sensitive to light - my head neck and spine have been mri d a lot with the MS issue.

[magirose in reply to Toysoldier]

Ok so my experience is I have a form of vasculitis and my migraine was very extreme and being caused by inflammation in the brain stem. Very difficult to diagnose as doesn't show up on scans etc but my vasculitis specialist diagnosed it on symptoms and disease history. I was treated with interferon and was completely normal for three years of treatment. Currently in a kind of remission with only some joint pain and gastritis. Oh also b12 defficiency but that is in my family. So no migraine since treatment which is great. But fstigue and "zoning out" wete part of my disease profile along with other symptoms. My esr and crp were ofyen a bit on the high side showing an inflammatory process going on.

[Toysoldier in reply to magirose]

Hi. Thanks again for taking the time to reply.

Until recently I had no idea all of these things could be connected. My main and abiding issue is cognitive but I have others like the spondoloartropathy, migraine, prostatitis, pins and, needles, blurred vision, itching, tinnitus, lip tingling to mention most of them! Good thing I have a sense of humour! I now have a dodgy wart on my finger which is being biopsied in the morning. Not sure what to next to be honest.

You seem to be well informed with yours which is really great. Do you still have memory issues or were they resolved? I’ve had some thought provoking replies on this forum which I’m grateful for.

Where do I go next?!

Any other thoughts welcome!

[magirose in reply to Toysoldier]

Hmm you've got other issues there which can be caused by inflammation/auto immune issues. My disease is auto inflammatory and causes multiple issues. In terms of where you go with it that kind of depends on where you are based. I know more about potential contacts in the uk so if you are here then I could suggest some useful doctors possibly. I am in London but travel ti Cambridge for treatment. But I would certainly suggest looking at a good rheumatologist. They obviously vary greatly and I know people who struggle to be diagnosed.

My memory issues were greatly improved as all my symptoms were with interferon. Within a week of treatment I was almost completely 'normal'. Free of all symptoms and pain. It was incredible. Even my chronic sinus inflammation went. But then I got B12 defficiency and that has now affected me badly and caused issues recently. I have a really great genetic mix going on! Just lucky I guess lol. My mum had pa and it looks like I am following in her footsteps. But yes the cognitive issues went away with treatment. But I had no brain lesions and nothing remotely problematic on scans. Neuro described my brain as pristine which I was obviously pleased about.

[Toysoldier in reply to magirose]

Hi

I’m in Warwick as it happens. I’ve seen a rheumatologist in Leamingon who was supposed to be very good but he didn’t listen well and the write up he gave sure wasn’t me!

Any help would be much appreciated.

Thanks again

Chris

[magirose in reply to Toysoldier]

Just had a thought...I know of a good neuro with a special interest in inflammatory disorders. He writes very well on the issue of migraine within inflammatory diseases. I will have a look for something for you and give you the link. It will make interesting reading for you.

[magirose in reply to Toysoldier]

Oh and I should add that neurologists ent etc were useless to me. I was diagnosed by an immunologist and my treatment now is with a specialist in vasculitis. I saw a neuro recently who didn't even know you could get peripheral neuropathy with vascilitis! He was a bit dismissive at first until he had ruled everything else out and my other specialist atributed it to my disease.

[magirose]

Sorry also should mention the b12 issue if you have neuropathy. Has your b12 been checked?

[tom1984]

Just replying to say that I get the symptoms you speak of also - the first time it started happening with my memory it absolutely terrified me. I also had white matter legions when scanned and was also told not to worry (which of course I absolutely did for months/years after!).

Can't really offer much advice, but over ten years after the memory issues started it seems to be much, much better - so don't be worried that it's going to progress to be worse and worse, it seems to be the opposite (for me).

As some others as mentioned, B12 seems to have helped me loads (when no other meds worked). I've also taken magnesium and co-enzyme q10 - when I was taking them to a strict regime I was pretty much migraine free and feeling fantastic for the duration....of course once I started feeling better I stopped taking them and then symptoms came back (but nowhere near to the level as before.)

If you're worried about your symptoms at all or the lack of any decent mind resting diagnosis, demand more answers from your GP, get referred to a proper migraine clinic at a Neurology department - or better still, if you can get to London go to the National Migraine Centre. Don't just dwell on things worrying, make your GP get you answers, it's what they are there for.

The absolute worst thing for me about migraines was the fear that it was something 'worse' and I was going to get worse and worse until it killed me. Speaking to the right doctors with the right knowledge set my mind at rest and I wish I had done it years ago - a huge weight off my shoulders.

Best wishes

[Toysoldier in reply to tom1984]

Hi. Thanks for taking the time to reply. I think a migraine specialist is my next step. May your days of clarity be many!

[tom1984]

...One more thing, the 'zoning out' and 'days of clarity' really struck a nerve with me - I know exactly what you mean.

[rhea_smith1991]

Hiya I suffer with migraines I also have temporal lobe epilepsy and a form of vasculitis. Have u ever been tested for temporal lobe epilepsy? People think that all seizures are the tonic clinic wer you fall to the ground and convulse but ther are so many different type of seizures and your symptoms the funny smells the strange senstations feelings sound like they could be a partial seizure also with the memory issues as I have bad memeory issues because of my epilepsy. Am not saying you have epilepsy just letting you know it sounds similar to some of my seizures and auras. It could also just be symptoms of the migraine itself when I have a migraine the left side of my mouth can droop and I can't speak properly I thought I was having a stroke one time I went the hospital and it was just all symptoms of a really bad migraine, I always get scared ther is something else going on as my symptoms arnt just head pain ther also neurological. Hope your well.