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Rarer type of migraine (my story)

7 replies

roseblossom75 · 24/05/2018 09:56

For anyone who suffers from the rarer type of migraine, here's my story.

I was thirteen when the first one hit me.
I was in my second year at high school.
I remember it was a really bright sunny day, and I was sitting outside in the lunch break with a group of friends.
I will never forget looking at my friend and only being able to see half her face. She looked like she only had one eye. The other half was completely blanked out.
At first I just thought I'd looked at the sun for too long, but instead of my vision returning to normal, the blind patch gradually started to increase.
I remember looking at the sign on the school wall and only being able to see half the letters.
At thirteen I was terrified, although at that age I wasn't really aware of the serious things, I knew there was something drastically wrong.
I didn't tell anyone.
My friends just carried on with their conversation, completely oblivious to what was occurring inside my head.
I was relieved when half an hour later my vision gradually started to return to normal.
However, that wasn't the end of it.
In the French lesson that followed I became really confused.
I remember looking at each person in my class and desperately trying to remember their names.
I knew all their first names and surnames, but I couldn't for the life of me remember who they were or what they were called.
The voices and background noise sounded echoy as though they were calling from a distance and I couldn't understand what they were saying.
When it came to writing in my book I realised I had forgotten how to spell in English never mind French! The letters were all jumbled up and none of it made any sense.
I tried to tell my friend that I wasn't feeling well, but to my horror my words came out in complete gobbledegook.
My friend just laughed, thinking I was being silly. It was a French lesson after all. I think she thought I was trying to pronounce something in French, but I just wanted to say "Please help me". I knew what I needed to say but I just couldn't get the words right.
Then came the one sided numbness.
It started in my little finger and gradually spread over each digit in turn, then my hand, up my wrist and arm to my shoulder. Then half of my face went numb and tingly including my tongue.
The numbness lasted around ten minutes, and then the grand finale was the worst most excruciating headache I had ever experienced, accompanied by vomiting.

The most scary migraine I ever experienced was when I was seventeen and at college.
I had what I now know to be a double migraine (it usually effects just one side but this one effected both sides of my brain at the same time).
This meant the visual stages were almost constant without any reprieve. I couldn't see for at least four hours and up to 80% of my vision was blanked out and replaced with wavering flickering bright lights.
The confusion was worse than ever, so I could barely speak and didn't even know my own name.
I remember standing up and trying to walk but my legs were like lead and no matter how hard I tried I just couldn't get them to move (numbness effected both sides with this one).
It took me three days to fully recover.

Now I get them on average about every six weeks (which is quite enough).
Although I have learnt to deal with them over the years they are still very scary as each one is slightly different.
Sometimes I will have a longer visual stage or multiple visual stages which make me panic.
I think for me the visual stage is the most distressing.
I carry on through them and no-one is ever aware that I'm having an attack.
The confusion is also distressing as I struggle to remember passwords, lose the ability to spell and sometimes forget my own children's names.
The only blessing is that this stage is usually short lived (about half an hour).
The scariest part of the numbness stage is without a doubt when my tongue goes numb.
Some are worse than others. I can sail through the short lived ones but then I will get one of the horrendous long lasting monsters that make me panic and bring me to tears.
I sympathise with anyone else who suffers as most people assume a migraine is just a very bad headache and have no awareness of all these neurological symptoms that accompany this type of migraine.

I have found the main triggers of mine are hormones (without a doubt. I'm only 42 but already pre menopausal which is proving to be a nightmare in itself) and also bright sunlight (which is why I wear sunglasses a lot).

I haven't found a cure as yet, but I am considering having the darth piercing done (if I can pluck up the courage).
I think anything that gets rid of these monsters once and for all can only be a huge blessing!

OP posts:
allypally999 · 24/05/2018 14:24

Goodness that's all very familiar. I have been getting them since I was 36 - also hormonal. I went totally blind once for about half an hour - scared the bejeesus out of me. Only bright spot is that after menopause they are less violent and can be chased away with drugs phew! At the minute I am still having lots of little ones but hardly had any in the winter - not sure what that connection is other than sunlight. I did once have a numb arm which lasted for weeks but they thought that might be a stroke. I found the injections pretty good (and fast) when I was at my worst. Good luck!

WeAreGerbil · 24/05/2018 21:57

I've had them too in bouts, it's weird, in some ways I can just carry on as I am but with slight functional impairments, e.g. only being able to think of simple words. Once I had one in a Spanish class and I could only pronounce words I already knew, not new words, even though Spanish pronunciation is easy. I get visual disturbances too. The first time I got one I was driving in bright sunlight, I've not made the link before but I guess that could be a trigger for me too.

Scootingthebreeze · 24/05/2018 22:05

My husband has this migraine too. It's hemiplegic isn't it? We genuinely wondered if he was having a stroke the first time it happened as the symptoms literally mimic one. Absolutely frightening.

He has been given a med to try (zopiclan I think.. .Not sure) but it would be great to try and work out triggers. It's hard as 'typical' migraine triggers are easier to work out normally whereas hemiplegic ones seem hard to figure out

He is a tough cookie yet he was feeling almost suicidal with the pain, said he'd not felt anything like it

Idratherhaveacupoftea · 24/05/2018 22:16

I just get the visuals, I don't get a headache. The visual is scary but only lasts about 20-30 minutes. I understand they're called aural migraines.

Anothergoodday · 24/05/2018 22:25

I have the same symptoms as you OP followed by a dreadful headache that can last a few hours then what feels like a hangover for the best part of 24 hours. I don’t know what triggers mine but can go months without then get 2 in a week.

The worst part for me is the feeling of panic when I know it’s about to start and I won’t be able to stop it.

mydogisthebest · 25/05/2018 12:38

I only started getting migraines when I was 50. At one time I was getting at least one a week but now (I take medication) I only get bad ones about twice a year.

My DH often says he knows I am going to get one as my speech becomes slurred - I don't always notice it. Another sign for me is that I can't stop yawning!

Sometimes I lose the sight in one eye, sometimes I get the flashing lights. Both can last up to an hour. I absolutely lose the ability to think and function properly. Before the nausea hits if I eat or drink everything tastes strange.

Then usually I start getting a pain down my face. From the top of my head down and round one of my eyes, in my ear and down my neck. It can be quite bad but nothing to the pain in my head that follows.

The pain is indescribable. I have a high pain threshold but I often sob or scream with the pain. Then I start being sick. I can't keep down even a sip of water. Even not eating or drinking doesn't stop the sickness. Once I was literally vomiting every 20 mins for 2 days. A couple of times my DH has had to call a Dr out to give me an injection to stop the sickness.

Migraines are horrendous and I have total sympathy for anyone that suffers them. It annoys me that so many people think they are just a bad headache.

I had to give up work because of them. My Manager was totally unsympathetic and if I hadn't left I would have got sacked. She said she couldn't understand why I couldn't come to work as another member of staff managed to work with a migraine! yeah of course she did

FluffyPinkCloud · 27/05/2018 12:07

I suffer with hemiplegic migraines too. They are absolutely terrible! They started 18 months ago, now i have at least 4 or 5 a week and end up in hospital approximately once a week at the moment. I have double migraine mostly and lose the ability to move from the neck down. It’s so scary.

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