Hemiplegic migraine

[CaptainCabinets]

Hello MN! Afraid I can’t compete with maggoty bites but just wondering if anyone has ever had a hemiplegic migraine? I had several symptoms over the weekend which were suggestive of viral meningitis so went to the walk in centre and this was the provisional diagnosis I received from the nurse practitioner, with strict instruction to see my GP as soon as possible.

I’ve had migraines for years but this was something else entirely, my face dropped completely on the left side and my left leg wouldn’t cooperate with the rest of my body, I was writhing in agony at the pain inside my skull and my neck would barely rotate. I’m feeling much better now but would appreciate it if someone could tell me:

a) How often they reoccur
b) How I can prevent them

Ta

I’ve had ‘classic’ migraine since I was about 11, so just over 30 years but I only ever had one like you described. I was probably about 13 or 14. Mine was a one-off- I really hope yours was too.

I suffer with them, they’re awful.

Preventative wise - I was on 80mg propranolol, and 20mg amytriptyline daily with sumatriptan at the first sign of migraine. I also found a can of full sugar coke drunk at the first sign of migraine onset could help (80% of the time maybe)

Biggest thing that’s helped mine is having my daith pierced which has reduced mine massively. even though there’s no medical reason why it should!

Frequency seems to be person dependant - at my worst I was having two episodes a week...I’m now maybe one every couple of months - but as a result of the daith piercing not the drugs, the drugs reduced frequency to once a week or so 🤨

I have ordinary migraines regularly and hemiplegic ones very infrequently, about once every four years. My Mother also has them. I have been admitted to hospital three times as Doctors thought I had had a stroke. I wake up in the night , go to toilet and collapse, I have no real warning that I recognize, it takes me about 3-4 days to recover.

My mum has suffered from these on and off, but they were particularly bad when she was younger (teens / twenties). She was referred for tests at a neurological hospital at one point as they wanted to rule out strokes. They affected the whole side of her body (so movement in her face, arm and leg was impaired). She is in her late 70s now and hasn’t had the hemiplegic migraines for a while. In fact, the frequency of her migraines has decreased drastically as she has got older. However, when she does get one, they still affect her speech and thought processes so she has trouble finding the right words, but she’s fine normally.

I think prevention-wise, people have different ‘triggers’, but hers seemed to have been brought on by red wine or chocolate in th past.

I started with those kind of migraines at four, and they were a regular occurrence until I was around 12.

They lessened and faded out completely by age 30 or so.

They're bloody horrible!

I sometimes get the blurry vision and aura, but it hasn't turned into a full blown migraine.
I live in fear though, as they blighted my childhood; always on school trips, or when I was looking forward to something.

I have them, during pregnancy and while breastfeeding I'd get them about once a week, but usually about every 2 or 3 months.
It changes side each time, but when I get one my entire side gets pins and needles and then goes numb (face, arm, leg) and I get easily confused and can't think straight. I also get an aura and the crashing headache, thankfully I don't get nausea.

I think they are hormonal for me, no doctor has ever taken them seriously, I fucking hate it.

I've had them chronically since 2011, Im down with them at least 3/4 weeks of the month.

I see a neurologist for mine, his sub speciality is headache and migraine.

Right now, I have one which is affecting from the waist down, vertigo, nausea. Im lucky that mine don't always have the headache present, which confused me in the beginning. However, I am often affected by 3 limbs which aren't typical hemiplegia (as that's one-sided), but sometimes one-sided or just a limb, Each attack is different.

I have had intensive physio, speech and language and OT input. I have ended up needing carers x 4 times a day when I am bed bound. I have had to be fed by others at times and my swallow has been comprised at others.

I frequently lose my speech to them, I also lose my word finding abilities and trying to describe stuff can get funny, "black cold thing in the kitchen" aka fridge. I have had complete memory loss where I have spent hours/days not recognising anyone or anything and then the memory comes back in a massive rush... very emotional.

I've also had numbness, areas where my limbs have gone stone cold with reduced pulses, loss of vision for hours at a time.

Nausea/vomiting is common. Projectile vomiting is my speciality. I live in a silent blacked out house. Its the only way I can survive. I am always worse in summer but winter brings its own challenges.

Im not scared by it much now. It sometimes scares others.

Mine hit quickly and I can go from upright walking and talking to unable to move, with no understandable speech and limp limbs in less than 15 mins flat. Alternately I wake up in an attack.

The staff in my local a&e know me by now and I only attend if there is something unusual in the attack or it is prolonged.

My shortest attack has been 3 hours and my longest has been 3.5 months. It was finally brought to an end by hospital admission and throwing lots of drugs at it.

Medication wise - I've had various treatments Topamax, botox, infusions to help which have helped for a short time. If I can get it on in time and I have head pain, I am helped by high-pressure oxygen so I have a tank beside my bed.

Keeping blood sugar level helps, hydrated, toning down environments when I need to be out of the house (earplugs/eye mask/sunglasses).

I use supportive equipment like crutches on the really good days, wheelchair on the bad days, rollator on the in-betweens. I tend to go splat if I don't use something.

I've had to hold a&e off treating me for stroke as I knew what it was but they didn't, its now all over my notes. I've had several lumbar punctures.

Sorry, I can't be more positive about it but that's how it is for me.

It's the bane of my life but hopefully, for you, it will have been a once off.