Hemiplegic migraines, anyone?

[LucyAshtonGeering]

Does anyone else on here have hemiplegic migraines? Eight years ago I started my migraine career with the more usual kind of migraine - aura, toothpick pain in my left temple -, and after three years these then shifted into hemiplegic migraines. These give me aura with nausea, dizziness, skin sensitivity and a sore throat, and if I don't take a triptan quickly enough the left side of my face becomes numb, as if it's disappeared. Since then the numbness has been progressing down the left hand side of my body - neck, shoulder, arm, leg. I recently had a two week hm attack in which the numbness also went down my throat, making it difficult to eat and speak. This attack seems to have left me with some impairment in my vocal chords. I also had a severe choking episode with the throat numbness.

I'm considering returning to a specialist to see if there's anything else I can do or take to stop these hemiplegic migraines becoming worse. The choking episode was frightening; luckily my husband was there to wallop me on the back but we're both now a bit worried it might happen again when I'm on my own. If anyone has any experience to offer I'd be grateful. In the meantime I'll be practicing the Heimlich manoeuvre on myself 😁.

[K_001]

Hi Lucy.I get the nausea and dizziness you describe. I also get the dropped mouth, tingling mouth,slurred speech and heavy feeling in arm. I have vestibular migraine. I’m on lamogrine 25mg which will be increased to 50mg twice a day. The choking episode seems quite scary. As a first port of call I’d ring your gp and explain your systems - they might transfer you to a&e perhaps. I was admitted to hospital from a&e where they ran a battery of tests.

With the symptoms I had they were testing for MS, fluid on the brain and a TIA.

Might be worth going to your GP as a first point of contact.

[LucyAshtonGeering in reply to K_001]

Hello K_001, thank you for your reply and apologies for taking so long to respond, I got into a loop of forgotten passwords and an "unrecognised" email address but I've beaten those and got back in, ha!

I'm sorry you also experience some of these issues. Vestibular migraine doesn't sound like much fun at all. Have you upped the lamogrine dose yet, and if so how's it going? My first hm landed me a sleepover in my local stroke unit because the drs were concerned it might be a TIA. So many medics came to stare at my wonky face I felt like a bit like a zoo animal (it's a university hospital so I think a couple of batches were students). It's really helpful to know that you were tested for MS and fluid on the brain. I've been reading about something called a migrainous infarction, which also doesn't sound great but I think it's helpful to know about such things.

This morning I saw my consultant and we're rebalancing some of my blood cancer medication and seeing how that gets on. I'm also on a waiting list for a migraine specialist via this forum, hoping to get some more support on how to manage any more intense episodes should they arise. Fingers crossed that was a one-off. Thank you again for your reply, and take good care,

Lucy

[Mandm2022 in reply to LucyAshtonGeering]

Hi Lucy, I am so sorry about your hemiplegic migraines. I suffered with them badly since I was 7 until after menopause. Perhaps the only good thing about getting older is that they often ease. I I used to have aura, delirium, unable to speak, numb nose, tongue, arm and fingers plus the dreadful pain and vomiting for 3 days. Back in my day aspirin was the main treatment. Regarding the choking which sounds very frightening, I had that once as well and thought I was going to die. My doctor at the time assured me that it wouldn't come to that. Now I just get aura and dizziness for half an hour and only occasionally do I get the right sided pain. I wish you well with medical treatments that you take on, but be assured that these migraines will surely ease as time goes by.

[Jaxxi]

Best run these new symptoms past your doctors: with a complex illness like hm it’s easy to assume it’s the cause of everything, which might not be the case.

I have had one single very distinct hm attack 2 years ago, but many years ago, before I knew I had migraine, I used to get a kind of paralysis of the swallowing muscles on the one side. It was very scary being mid-swallow and suddenly realising you couldn’t complete the action! I took to massaging the food down by firmly stroking the neck - it worked - and from then on taking only small bites until the feeling wore off. I had no idea what it was and didn’t get any medical help as by my 20s had been medically gaslighted so often I was certain they would attribute it to hysteria. (Turns out I had a rare and complex illness Behcets Disease eventually diagnosed when I was 56!)

[LucyAshtonGeering in reply to Jaxxi]

Hello Jaxxi, thanks so much for your response and advice. I'm so sorry you were experiencing these distressing symptoms and for such a long time before diagnosis. The throat stroking is a great tip, thank you. Reminds me of doing this to pets to help them swallow medication!

I've only recently heard about medical gaslighting but it makes total sense. I was so used to having to fight my corner with so many disinterested medics that even now I'm getting the right level of care and medical attention I still always think my concerns will be dismissed. I hope you're receiving the right therapy and care now. Before finding this forum I hadn't realised that the paralysis / numbness is part of the hm aura - I'm learning so much. Thanks again for your reply, and take good care,

Lucy

[marigoldtea]

Hi Lucy, I have Hemiplegic Migraine with severe aura and frequent paralysis. I experience throat numbness, swallowing difficulty and food gets stuck sometimes which is very scary. The sensation as the numbness spreads is horrible too . I have had to adapt by eating soft easily swallowed foods and always have water by me for if anything gets stuck. So sorry you are having this frightening symptom.

[LucyAshtonGeering]

Hello Marigoldtea, thank you for your reply. I'm so sorry you also experience these horrors. It is helpful to hear that I'm not the only one with them and thank you for your tips about the water and soft foods, I will put those in my arsenal. Are you on medication therapy for hm?

Take good care,

Lucy

[BitBrokenBrain]

I’ve been living with HM for about 4 1/2 years. The choking thing is common for me, and is sometimes the first symptom I get to let me know it’s started (especially when I’m too busy to notice other stuff). Staying calm and being patient has helped. I prep foods that are easy to swallow for days that I know HM has started, which also keeps me out of the kitchen when I shouldn’t be trying to cut or cook (had quite a few kitchen mishaps in the first 6-7 months of this journey). Carbonation seems to make it worse for me. Also- when you have the blockage, don’t try to drink water to pass it.

In the U.S., we don’t take triptans for HM because of the increased risk of stroke. I take Ubrelvy at the onset. It isn’t as effective for HM as it is for some of my other types of migraines, but it does help! I’ve heard good things about Vyepti for HM, but haven’t tried it. Treatment has been trial and error, I’m currently the only patient with HM in my physician’s multi-location practice. Science definitely seems to be taking it’s time with finding help for our specific type. Stress is my #1 trigger, so learning to manage that, followed by learning and avoiding other triggers, has been my best defense so far.

Wishing you good health and longer stretches between these little beasts!

[LucyAshtonGeering]

Thank you so much for your reply. I’m so sorry you have these beasts too, and with the throat paralysis. That’s interesting about your drug therapy, I don’t think Ubrelvy is available in the U.K. but I’ll certainly make a note of it and Vyepti, and talk to the specialist about them. I’m thinking it’s time for a new approach as my barrier meds don’t seem to be working anymore. Recently I’ve had 10 consecutive migraine-free days - the longest since they revved up in July - so I’m hopeful I can return to some stability again with them. Navigating around the increasing amounts of triggers is a feat in itself! Good luck with yours too!