Hi from a newbie

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Hi from a newbie

Post by SueL on Thu Jun 16, 2011 2:34 am

Hi all.

I have just joined and will try to give you a shortened version of my very long/unsuccesful journey.

I have suffered with headaches and migraines from around the time of puberty. About 5 years ago, they gradually started getting worse with more frequent migraines. I was referred to a specialist who sent me for a brain scan, which was clear, prescribed me with some meds and discharged me! I had a bad time with side effects but because the specialist had discharged me, I had to go back to my GP. I tried numerous medications but nothing worked.

A few months later I found out I was pregnant and throughout the whole of my pregnancy/breast feeding I felt great with barely any headaches. Once I stopped breast feeding they started again with a vengeance. That was about 3 years ago and since then I haven't had one single day without pain. Crying or Very sad

Since then I have been backwards and forwards to my GP and got another referral to a different hospital who specialised in migraines. I have had numerous appointments with a neurologist and had pretty much every medication there is to take with nothing working. At one point I was taking prescribed morphine to try to counteract the pain...that didn't help either.

I have been referred to a hospital close to the midlands for a treatment that my hospital don't do and I have also have been to the City of London Migraine clinic.

Alongside the appointments at the hospital I have tried (will financial help from my family) Accupuncture, reflexology, herbal treatments, hypnotherapy and am currently having the Bowen Technique.

After having almost a year off in an 18 month period, my employers finally got rid of me under the grounds of 'capability'. As mine was the main wage in the house, it has been very difficult for us financially.

I have more recently had another brain scan, a lumbar puncture procedure, occipital nerve injections into the back of my head and am on the waiting list for an introveinous treatment.

Well that's me in a very long nutshell! I look forward to chatting with you all.

Sue x

SueL

Posts : 3
Join date : 2011-06-16

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Re: Hi from a newbie

Post by Tee on Thu Jun 16, 2011 3:03 am

Hi Sue

And welcome Smile

I have goose bumps reading that - such a familiar story - I am so sorry you are having such a crap time of this. Sad

Has anything reduced them at all, even just a little?

I am sorry you lost your job over this and I do hope you have gone for DLA - if not there is a section on here and I am sure some of the others will help with that.

I am pleased you have found us - so many of us in the same boat - so you are totally amongst friends.

I am sure the others will be along soon to welcome you too.

Hugs Hug4

Tee



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Re: Hi from a newbie

Post by Sheena Hulston on Thu Jun 16, 2011 3:14 am

Oh bless Sue
Like a lot of us youve been through the mill a bit.
What meds have you tried so far?
I too was the main bread winner as my hubby took the leap of becoming a manager just before I became ill. We have learnt to cope though.
My lumber puncture came back slightly elivated in pressure but that was brushed aside!! So I will be interested in what they say about yours. x
Speak soon
Sheena x
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Re: Hi from a newbie

Post by SueL on Thu Jun 16, 2011 3:39 am

Thank you for the welcome.

I don't take any pain killers at the moment as nothing worked, apart from 2 dissolvable paracetamol tablets when it is particularly bad which helps the 'temple throb'. Other than that, nothing has worked.

At 37, I am claiming benefits for the first time in my life and am trying to get my head around they system. I currently get Employment and Support Allowance and did apply for DLA but it was refused. I appealed but that was refused also. I did see the thread about it so will have a proper look through the site tomorrow when I have the day to myself!

As for meds, I have tried everything related to migraine. If you went down the 'accepted' meds, I will more than likely have tried it! Am currently taking anti-convulsions but am being weaned off them as they are not working. I am currently waiting to go into hospital for a week for intraveinous dihydrogotamine.

My lumbar puncture was fine so can't help you on that one.

It's so nice to talk to people who understand what it is like to have such a debilitating condition.

Sue. x

SueL

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Join date : 2011-06-16

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Re: Hi from a newbie

Post by Tee on Thu Jun 16, 2011 4:54 am

Sorry you were refused DLA - It so unfair that you get sacked for illness but cannot ten claim for illness - do have a look on th thread a few people have fought the system and won. How about incapacity benefit?

If you respond to Triptans then DHE has a good chance of breaking the cycle. - Fingers crossed for you.

Have you tried Fluarazine?

Tee
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Re: Hi from a newbie

Post by whitzendJane on Thu Jun 16, 2011 5:43 am

Hi sorry to hear that another person has been 'through the system' etc .

DLA is a bit of a nightmare and it's best to have someone like DIAL to do the forms with you...I expect you are eligible but if you don't word it 'just so' they tend to brush it off.

DHE does work in the vast majority of cases..sometimes on the first infusion..then it's a question of how long you feel the benefit for.

Are you coming to Stoke on Trent for it? If so you will have the pleasure of meeting the lovely Dr Davies...you are in good hands with him.

I really hope there is a light at the end of the tunnel for you with DHE (as opposed to the migraine train thundering towards you).

Keep posting as we all support each other through the highs and lows on the forum..I always find it's easier when you aren't the lone chronic Mig sufferer.

Kindest regards
Jane
xx

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Re: Hi from a newbie

Post by Tee on Fri Sep 30, 2011 8:04 pm

Hi just wondering how you are, did you appeal to the dla?

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