Following the Daily Mail paper trail ........

Hello to everyone!
another newby folling the Daily mail link.
I became ill about 19 months ago ,with a really strange, painful and scarey episode that I presumed was migraine. It came from nowhere and has totally changed my life.
I suffered from paralysis on my lift hand side - extreme pain in my arms and leg, difficulty breathing, palpitations and pain in my chest and visual disturbances or after glow with everything I look at, I became confused and frequently wandered , I have very poor short term memory and have episodes where I experience what I call white noise from all I my senses. my body seems to 'shut down' during this time and I sleep for hours - ocassionally when I wake I have idea who I am or where I am.
The symptoms were wide ranging and the best way I can discribe it was to say that everything felt wrong in my body - like everything was wired the wrong way round. When they 1st started happening I thought I was dying - I'm not a flighty person I'm quite grounded and unflappable but I genuinely thought my time was up.

2 years later they are still here for the 1st year I was having multipul migraines every day and also through the night - my speech was affected I have Muscle weakness on my left hand side.
After 3 hospital stays, and 3 MRI's/brainscans Ive picked up a few official medical diagnosis along the way - Its due to emotional stress - Its due to cfs - its due to coeliac disease.

Ive requested a second opinion (after coersing my gp for 30 mins on the phone) my consultation is in a weeks time. Im not expecting miracles just some practical help.

Ive tried pizotifen , I genuinely cant remember if it worked as I was an emotional zombie on this drug. My gp prescribed triptans which make me feel so poorly I no longer take them.
I have radically altered my diet - gone gluten free - erradicated chocolate, cheese, any smoked or aged foods. this has helped conciderably but I am still in a constant migraine state.
I live alone with my young child, and how she has coped with all this god alone knows. She is my rock, but I constantly feel sorry for her she shouldn't have to shoulder this burden at the age of 6 sometimes she cries because she is scared - it makes me want to weep thinking about it.

Of course there is much more to my story as I know there is to everyone who joins this site.
Im just hoping to make contact with others in the same situation.
I get on with things, because we have to dont we. But my friends have stopped calling txting and visiting. Hemiplegic migraines have alot to answer for !!!

Thanks for giving me a space to tell my story and say hello x

Good morning - so sorry to read your story which touched many nerves with me.......

Have you had the HM diagnosis?

You say you have a consultation in a few weeks time - is this with a headache nueroglist?

If so that is great and the first step to making a plan of action - whilst HM cannot be cured - you can get better management of it - it is easy to say that but I know a lot harder to achieve - but in time it is possible.

I am often asked how and to be honest it will be different in each person - and I wish I had all the answers but it will be a combination of things, I have not met anyone yet who has solved this with just one change.

Preventative medication is defo worth a try and there are loads out there - you just have to give them time and keep an eye on the side effect - the doc should be able to draw up a plan based on your personal symptoms and history. But do have a read on what others have tried (there are loads of threads on here) - there is nothing wrong with you asking to try something.

Do you keep a migraine diary?

Live style changes are the next thing to consider - you have already done some of this - ie the diet - I am also gluten free and it has helped. Trying to work out your triggers and avoiding them is a useful task to do - but again can take a while to do.

Have a look at this list - does anything jump out ?
https://migrainetalk.forumotion.co.uk/t330-types-of-triggers

Supplements is another possible avenue - there is a lot of people on here who are taking natural alternatives and supplements - personally I have found magnesium from a natural source to have helped.

The other thing I found to help was 'me' time. I had a great doc who told me that I was pushing it and that what I did today for 1 min I should do tomorrow for 2! NOT 20..... It was a hard lesson to learn as I was a very down to earth hands on - get stuff done - type of girl ...... but now I do not feel guilty if something does not get done - its not the end of the world and it will be there do to tomorrow - I know my limitations and when I feel it getting worse... I rest....

I hope that makes sense............ but please do keep asking questions - knowledge is the key to understanding.

Good luck with the consultation and please do let us know how you get on


Tee x