Going to be the first!!

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Going to be the first!!

Post by Sheena Hulston on Sat May 07, 2011 3:29 am

I can remember nov 2008 had a cold had been getting more and more shaky and forgetful over the year Dr had said on verge of Diabeties!!!! I had a few temper tantrums with my family ( so unlike me) forgot basic things drove away into the sunset and "woke up " 50 miles away from home, scary. I was a a Field sales advisor for an energy company, hard fast cold calling sales, i loved my job, loved talking to people and people had grown to know ,like and rely on me over the 9 years Id been doing the job.
I Knocked on one door only to be told Id just spoken to her half an hour before, that spooked me, I went back to my car and cried, I felt so ill and lost My boss rang and said my deals were not adding up I lost the plot went home and had a huge argument with my husband and went to bed!!!
Next morning I woke up and thought Id slept on my arm odd as it was asleep and tingly I was still so angry I had a fag then went for a shower, I was so tired..... But when I looked in the mirror the whole right side of my face had dropped that when I tried to speak and found I was slurring. that's about all I remember for the next 4 days.... except when they did the MRI they found a cysts on the third ventricle.
For the next few months the "strokes" got more frequent we rushed around trying to find a Dr to operate on the cyst only to be told it was "non operable" and to get on with life.
The pain got intolerable Dark rooms Heat pads and pitzotifen my only hope. I waited every day just for sleep.
I didnt give up, everytime I went to A&E they sent me home even saying there was nothing medically wrong with me, unable to talk being sick and stroke like symptoms, ok!!! I took that!!!, no way. MP got involved and then I put my scans on the internet and my local hospital put me on Gabapentin and BINGO some relief at last.
Then UCLH got back to me a consultant said they would look at me
18 weeks later I was taken in and on day two I was seen by a headache Dr and I uttered the word WTF good is a headache DR going to do? 10 min in a few question and again bingo!!! I had HM with Basilar migraine a well. I said "I only have Migraine" and I cried. they checked the cyst it wasnt growing it was ok!
So now although lots of different meds later on and off them now on topamax and flonarazine I can think, join in conversations, only wear dark glasses on bad days, enjoy my grand kids, I am back a bit on track but not in those black days back then.
I think we all must have some success in our lives and should all be a bit more positive. So I thought I would be the first.
I know I will never be ME again but at the mo this is ok but could be better, but could be worse!!! lmao x x Very Happy
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Re: Going to be the first!!

Post by whitzendJane on Sat May 07, 2011 6:25 am

cheers

Thanks for sharing that SHeena.

I feel a success too in a way too because I am learning to accept the way I am now. So despite having no further treatment options available to me it was almost a relief to just be left to get on with life.

I never thought I would be able to think that way but it has given me the freedom to explore what I can try and do rather than looking to the next appointment or treatment to solve all my worries. Being discharged was a strange mix or sadness, acceptance and relief...mainly relief that I had taken that decision myself at a time I was ready.

Yeah life's different now but I do think I am a better person for it in someways.

Jane
xxx
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Re: Going to be the first!!

Post by Tee on Sat May 07, 2011 7:10 am

Oh Sheena - THANK YOU so much for that. I had goose bumps and if I am honest a tear. Going through what you did and coming out the other side is both very scary and just damn amazing - acceptance is a hard word to swallow - and although I am not quite there yet - I am on my way.

Starting this forum has made me think back, and I have realised over the past few days, that I have actually come a long way.

Like you had a top ex job in the city for one of the worlds largest firms of accountants - it was demanding, full of pressure and I LOVE it. I was a total control freak, would right lists for my lists lol I was the steady hand, the calm one, the completer finisher - I solved other peoples problems................. Ok I had 'turns' once in while - I had seen doctors about them - only for them to take blood tests and tell me I was ok................ turns out my first HM was at 18 whilst I was on the catwalk........ but they said I was fine....

... my first full HM did not even scare me - sounds strange now - I was annoyed it had happened - I was busy. I was only 29 and I was working on 12 events at the same time - stress was very high - but I was in control (or so I thought) I started on the Monday with a slight numbness in my left cheek, that spread over the week, to my ear and mouth - then I started to have problems walking, I thought I had a middle ear infection and knew I should see a doctor, but I had so much to do I just carried on (looking back I have no idea how I got through that week) But I had a dinner dance for 300 people that weekend and I had loads to do... anyway.... on Friday I finally gave in and called to see my GP on the way home to get some antibiotics, at this stage I was seeing double, could not walk in a straight line and was totally numb in my face, and talking funny - the GP took one look and within the hour I was in a hospital bed with MRI and lumber punches being organised - WTF even then I did not give in - I was so cross - I remember saying to them I have a dinner tomorrow I 'cannot' be in hospital........... I discharged myslef!!!! but did spend a few weeks off work until i felt better.

To cut a long story short, I had another one the following year and then a string of them when we moved back to Kent (Again stress I had a new house, new baby and new job with a large team at the same time) I did see doctors then and they just wanted to give me anti depressants.

No one had ever told me you could have migraine without the banging headache .... no one said this could get worse..... I did not know it could go chronic and that you should avoid life stress..... I did not know you could have status migraineus.... or that this could take over your life.....

Then the really big one....... to loose your mind over night is the most frustrating experience I have had - I felt totally out of control for the first time in my life ..... its only now 5 yrs on, that I can think again, ok not for a full day and I am probably waffling now lol

But - with small steps you can get some of it back and as you say Sheena - I might not be me again - but I going to give it a damn good go.

What does worry me, is the thought that there maybe some other young girl out there - who is having 'turns' and the doctors are still not thinking it might be migraine - I mean you go to a doctor because something is wrong - they run a blood test and it comes back normal - so you are given a smile and told to go on your way..... but hey... the problem you went in with is still there............


Sorry - I am in waffle mode
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Re: Going to be the first!!

Post by Sheena Hulston on Sat May 07, 2011 7:19 am

Hi Tee yea I know what you mean but I am damn sure my GP and local hospital will think twice before sending someone like me home again!!!! They may think migraine NOW!!! I threatened to tie myself naked to the railings one night and call the TV. LMAO I was nuts with pain then though x
sheena
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Re: Going to be the first!!

Post by Tee on Sat May 07, 2011 7:37 am

Fantastic - we will have to call you Emmeline Pankhurst the second LOL
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Re: Going to be the first!!

Post by Broadhoj on Mon Nov 07, 2011 7:28 pm

Thankyou! Both of you. I only joined yesterday and posted my journey so far. I am still in the process of coming to terms with my migraines and the more I read on this site the more I realise that I am not completely off my trolley. I have found it difficult to comprehend the persistent symptoms I have as being part of the migraine process - I am convinced I have hemiplegic migraines but my diagnosis has only ever been 'migraine'. I am 'on notice' at work for having had so much time off. I have gone part time and reduced my responsibilities and am enjoying the extra time I have to spend with dogs, horses and out in the fresh air though I do seem to spend a lot of my days off recovering from a migraine!

Anyway, I'm waffling now! Thankyou for giving me hope and making me realise I am not the only one who has experienced these symptoms - it does all feel a little isolating when no one can really give you an answer!

Jackie

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Re: Going to be the first!!

Post by Tee on Tue Nov 08, 2011 11:31 am

HUGS Jackie - coming to terms with this is difficult esp if you are an active person (which you sound to be) - you WILL get there, just give yourself some time. Rest as much as you can - it really does make a difference.

As hard as it is, you will need to make life style changes in order to fully mange this.

Migraine and certainly HM is a recognised disability, so you do need to go back and get the full diagnosis. Then make sure that work know this. You will be eligible for incapacity living allowance or what ever the new name is, if you cannot work through illness - a lot of us are on this. It is not means tested.

Also, if things get really bad you may also qualify for disability living allowance - again a lot with HM have this - there is a lot of info under the legal and benefits thread Smile


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