hemiplegic migraine

I've has hemiplegic migraine for 17 years.

Ive looked through everywhere I can find and no where does anyone say anything about sugar??!

Am I the only one?

Whenever I get that flashing eyes and odd dizzy feeling, I go eat and drink as much sugar as I can and it usually stops it from progressing or eases it up sooner. I always get are you diabetic questions to which my doctor ( who had to google hemiplegic migraine) said I wasn't. My mum tried it when I was younger and sugar has always helped. I don't know if it's worth someone else giving it a go and seeing if it works for them?

I have luckily had a few years break from any 'turns' as I call them. Only to have 2 in the same day at the weekend..which is a first for me.. Anyone else had more than 1 in space of a few hours?.... And I just can't get my strength and energy back, I might just manage to fold washing in 1 trip and run a bath but then i go all dizzy and spaced out. The turns at the weekend were the worse I've had as well as the after effects. How long do you guys usually feel funny for after? It's got me worried

My auras include

• visual ones (sparkly, wavy lights, tunnel vision, black-hole in middle of frontal vision, loss of peripheral vision),

• auditory hallucinations (hearing "talk radio" coming from somewhere but not being able to understand what is said: and I hate talk radio),

• olfactory hallucinations (smelling fire smoke, gasoline, electrical fires, and many other bad chemical smells, never any nice smells)

• gustatory hallucinations (tasting metallic things, burnt things, etc),

• numbness on L side of face not generated by facial nerve (at upper jaw & top of ear) but beginning at nose and spreading across L cheek & down to L jaw,

• numbness in L hand (but not arm), & L foot (but not leg), which is not apparently possible via nerve pathways & indicates "neurological involvement" I was told,

• speech difficulties (dysphasia, which mixes the order of my words in a sentence though I do not hear it), aphasia (an inability to speak at all though you are trying to - this was one of the scariest things ever), inability to make myself understood (garbled speech, the EMS called it before they began asking me about alcohol & drug use), slurred speech,

• inability to think clearly,

• uncontrollable diarrhea,

• chills, hot flashes (I'm almost 60 and have been through menopause twice, once normally and once surgically via total hysterectomy & never had hot flashes then, only cold flashes),

• insomnia, fierce, incessant craving for sweets,

• irritability,

• depression,

• emotional lability (rapid mood swings)

Most of the auras disappear once the HM actually begins, but some remain during the HM.

ALL the auras resolve after the HM, but I'm exhausted and sleep for an entire (24-hour) day, at least.

I've had seizures that give me no warning besides the headache itself: no convulsions; it looks like I've just passed out but I can't be woken.

The scariest part for me is that the seizures can become comas of indeterminate duration: once, I had one from which my husband could not awaken me. Neither of us knows how long I was out before he found me, but after he couldn't rouse me (he thought I was napping), he called EMS and I regained consciousness to find a crowd of terrified strangers in the bedroom). After a seizure, I am disoriented and often do not know where I am (like on my kitchen floor) or how long I was out.

HMs can flip into strokes, at which time they're termed "migraine us infractions" - stroke caused by a migraine.

Apparently, HM can run in families (mine does - both maternal great-grandmothers, maternal grandmother, etc) and when it does, they have discovered the gene that is damaged (?) and it is the same as the gene for grand mal epilepsy. Hence, the similarities between HM triggers and epileptic seizure triggers.

I've tried every med on & off label for migraines (they all increased number & severity of HMs and auras). I walk every day, visit a medical massage therapist who specializes in cranio-sacral therapy (the most helpful treatment to date), meditate, do yoga, avoid triggers, blah, blah, blah... You all seem to know the drill.

It's very difficult to find a doctor familiar with them, even harder to find EMS squad members who know what they are or what to do.

I wanted to add, at least, that though doctors are learning more about HMs, it took them over 10 years to verify the epilepsy-HM connection by finding the same defect (?) in the same gene, and then to discover the two types of HM: familial (more severe, more aura symptoms, begin earlier in life) and non-familial.

Don't give up hope. We are all on this path together.

But I do recommend a health bracelet with Hemiplegic Migraines inscribed on it, or, at the very least, an ICE app on your phone (home page, dock, or lock screen) that specifically includes your listing the symptoms and the fact that it's related to epilepsy since so few EMS volunteers, nurses, doctors, and ER personnel are familiar with HM.

Blessings to you all,

Alexandria Constantinova

I had two migraines one after the other on wed which had me pulling over on the side of the road to lay down as my vision had gone again. I'm a support worker and had a break in between clients so I pulled over to try and recover as I didn't want to call in sick. My symptoms,

Vision goes with the fuzzy zig zag and then the blind spots which then gives me anxiety, followed typically by numbness and paralysis trough my whole left side, I'm completely uncoordinated during this with slurred incomprehensible speech and disorientation then comes the crying then a huge throbbing headache, nausea and vomiting often. I remember in the third grade I threw up on a guy, sorry Tom. I'm completely noise and light sensitive this can last for hours in which I feel really scared and alone, especially if I get one during the day which means through all the symptoms I have to explain to work why I have to have the rest of the day off which leaves me feeling totally flat and sad.

These migraines have influenced my life in such away that I have avoided social situations due to not being able to communicate with ppl what's happening as I cannot speak and am noise sensitive leading to some kind of social phobia.

I'm so excited to go to docs tomorrow but am also a huge fan of natural medicine, will definitely talk to my naturopath about my migraines.

I just wanna say thank you to all of you for sharing you stories, I'm writing this with tears as after many years of feeling like I'm having a stroke I today saw that I'm not alone and that their is a whole community of us out there willing to support each other through this truly scary situation.

God bless!! Love Em. Xoxoxo

My symptoms:

whole side of body numb

face numb / droppy 

tunnel vision very bad 

splur speech if any

mouth numb

extreem exhaustion/weakness that could last up to 3 days on really bad episodes.  All I want to do is sleep,  and this is the only time I can sleep 16hrs with no problems.  It seems to be the best thing to do.  I'm on topamax been since 2006, my doc calls this type A migraine which tells me he has no clue.  I look up type A migraine and that is nothing that I have. I have been dealing with this for 14 years now,  and seems to get more out of control older I get, and this really hurts my work/job.  I have found over the years that tiredness and stress will in fact induce these episodes.  I have also found that my memory is definitely not as good as it once was and I find myself staring into space at times, or even wondering what I was doing.  So ya these are definitely not fun at all!  They started at the age of 19/20 years old and I'm now 34.  I'm located In Michigan if anyone has a good Nero doc that has Delt with this before would be awesome.  Thanks and if anyone one would like to ask questions go for it.  I have had MRIs, CTs, EEGs, TEEs, blood work all kinds of test.  And no matter what they seem to do it does not seem to be able to keep under control.  Thank you all.

I too suffer from hm with what the doctors call "a slow recovery rate" but which is meaning I now have a permanent weakness on the rhs and permanent pain (they think it is also trigeminal neuralgia which then constantly triggers episodes) but enough -the most awful thing is that today my teenage daughter was taken into hospital with stroke like symptoms and has just been diagnosed with hm. I am so devastated- so sad- I am so worried for her and trying to put on a "brave face" even though she knows how bad it can be as she has seen it for years now. My partner is my carer not my lover now and I see how sad it makes him - and sometimes how angry, though he always tries to remain cheerful. I used to be a professional guitar player and lost the ability to follow what I loved doing. Now I am a postgrad at York but am really struggling to keep it up as I have such bad visual problems,pain, sickness, can't walk ... You know what I'm talking about. I haven't been able to let out how hard everything has become and resent every time student disability services ask me if I'm if I'm not well enough- but it must be obvious-,I haven't been in at all this term. I can tell you guys that I just can't manage it any more- but I'm clinging on because I need to do something some normality - and now my daughter has got "the thing" as she has just called it on the phone. She sent us home at six and now is regretting it but as its a kids ward they stop visiting at seven so we can't go back.  I feel so sad for her and my own stress is worsening an attack. I know I should calm down and stop crying but I hardly ever let out how I feel- trying to be strong for my family as I'm still " mum" and they all look tome emotionally. Just telling some people who understand will help - and you all know that I am thinking of you all too. Xxx

Does anybody have a problem actually writing what you are thinking. This inability only happens at times but when it does it is scary. 

Thank you

April G