Newbie - Lonely, isolated HM Sufferer - Glad to talk -

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Post by StephM on Sun Jul 15, 2012 9:13 pm

Hi everybody, I'm so glad I have found this site, I'm in the Channel Island and seem to be the only one that has ever had HM, so when I try and explain to anybody how I feel they just look at me like i'm nuts!
I'm going to write a long one. SO SORRY.
I have been having what I now know as HM for 6 years and wasn't diagnosed for 18 months and spent that time thinking I was loosing my mind, Literally!
I live on my own and there has been a few occassions when I have had a handle full of pills in one hand thinking how eay it would be. Luckily I have a dog who seems to have a 6th sense as to when to put his head in my lap, look up at me with sad brown eyes and I just couldn't leave him, so have put the pills away.
Mine started about 6 years ago with bouts of sickness and diarrohea, that became more and more frequent, then before the sickness I would start getting incredibly hot, this went on for a few months begore my GP said time to investigate. I had MRI's CT's I had cameras put everywhere and I mean everywhere and every test came back normal. I even saw an Ear Nose & Throat specialist (not sure why!), then I had to give loads of blood on certain days after eating and then starvation and pee in a bottle for 10 days, all came backl normal.
Then more symptoms started such as feeling numb on my left side mostly hand and top part of my leg and then my left eyelid (always left) would start to droop that's when I spent a lot of time being rushed into hospital. It was only that I was in hospital one day and the young heart specialist who I knew came over to chat and I told him what had been happening that he suggested it might be migraine.
I'm afraid our neurologist over here is not really up on migraines and I'm also afraid to say wasn't that interested either. So he started me on beta blockers, several different brands but none worked, by this time I had tried all the Sumitriptans, sprays and injections and a whole host of other pills that they tried me on it would appear if I am going to get a HM then nothing, nothing will stop them from happening.
By now these episodes were getting more frequent and longer and when I was having one I started to loose the power of speech and my co-ordination was really quite bad. I couldn't even answer when asked what my name was, I realised that I needed a more specalist Neurologist
I found a specalist who has a great reputation Dr M Matharu, in London, which in it's self was a problem as I can't travel on my own as I have has several episodes whilst travelling and have ended up in A&E departments all over the UK!! Thankfully my Ex-Partner is still a rock and has to come with me.
I was hospilatised in London while Dr M did several tests and also injected into the left side of my head, can't remember what it was called. It helped the daily headache's I was getting for about a month (about a level 7) but they soon returned. He then started me on Flunarazine which helped for about 2 years (maybe 2 attacks every month instead of 4) but then due to Flunarazine not being licencesed I had to come off them due to uncertainty of side effects. Wow did my HM's get worse, I had to come home from work in a taxi one day and half way home I couldn't remember where I lived and lost the power of speech, the taxi drive had to phone my friend to get instructions where I lived, luckily when I got in the taxi I had time to tell the driver I was having a migraine so he was acutally really helpful.
Tried going back on Flunarazine but they didn't work, so then onto Topirimate as I hadn't tried that one so far, NO, i could not handle the side effects mainly the feeling of my enitre body being covered in stinging nettles and being uncontrolably ANGRY!.
So UK Specalist now wants me to have Botox, but there is a draw back as it's £500 and I just don't have the money. My GP is trying to see if the local health service would pay for it, the letter is in but I haven't heard yet.
Can anybody tell me does Botox get rid of the aura's? It's the aura's that affect my life more than the pain.
Unfortunately even though for the last 4 years I have not had a day's holiday as I use every day for my migraines I have reached my sick limit and my work are seriously considering getting rid of me, as I'm on my own the sickness pay I would receive from the government would not cover my rent so there is a certain amount of stress around at the moment. And Breathe!
So sorry I have written a book, but I had to get it out to people that will understand where I am coming from. That's if anybody is still reading this book!.
I will be viewing this site all the time now I have found it.
I hope you are all having a good day.
Take care. Steph


Posts : 2
Join date : 2012-07-14
Age : 58
Location : Channel Islands

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Newbie - Lonely, isolated HM Sufferer - Glad to talk - Empty Re: Newbie - Lonely, isolated HM Sufferer - Glad to talk -

Post by pīwakawaka on Sun Jul 15, 2012 9:50 pm

Hi StephM. Welcome to Migraine talk. I'm on the oposite side of the world, but I understand what you are going through. I had to give up full time work 12 years ago due to migraines and haven't be able to work at all for about five years.

I do hope your employer can find a way to keep you on, even if it means you get unpaid leave once your sick leave and annual leave have been taken up.

You'll find a good supportive group here, and who knows, a tip or two discovered here may help you with your situation.

"I didn't mind getting old when I was young. It's the being old now that's getting to me." - John Scalzi Old Man's War, 2005

Posts : 272
Join date : 2012-03-11
Age : 70
Location : New Zealand

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