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really bloomin miserable

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Post by onandoffagain Sat Jul 30, 2011 2:19 am

I haven't been on here for a while now, but today is the day when I have had enough.
My FHM seems to growing and mutating and I cant keep up with my life. I have had to buy an automatic car as my left side is so often affected. I have now started collapsing regularly and am frightened to go out alone in case I collapse. My husband has turned into a carer instead of my husband. The other night i collapsed in the kitchen smashing a plate then sat up and vomited on the floor leaving him to clear it up. My kids are so used to seeing me on the floor or spasming violently that they dont even comment anymore. I just want to sit and cry and im cross with myself for this because I have been fighting really well for 12 weeks now since this latest episode started. The muscle spasms are embarrassing as are the tremors and twitches.
Today I went to see my GP due to the recent collapsing spells, I didn't expect great things but at least time to hear how bad things had got, i took my migraine diary and he didn't even look. Just said 'have you tried sanomigran?'
I cant find a single thing that has anything positive to say about it, and it isn't mentioned as a good preventative for FHM. I really feel like he just wanted rid of me. I wish i hadn't bothered to make an appointment. Ive decided not to start the sanomigran as it has bad withdrawal and id rather wait for the specialist to suggest treatment.
I am still waiting for my appointment with neurologist. I carry working and living as much as I can but I just feel like giving up. I cant keep going from fine, to seriously unwell everyday. Just one or the other would do.
I told him my memory was getting bad and I get confused. He asked me where i live and my phone number. I know that. I've know that for years. Just because I know where i live doesn't mean I have a good memory! Sad

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Post by akrohn Sat Jul 30, 2011 2:36 am

I'm sorry you're having such a rough time. And having a jerkface for a doctor doesn't help. Sometimes I think we should be able to inflict our headaches on people that don't seem sympathetic, but then I feel guilty about thinking that.
I hope you get better advice from your neuro & that he/she will actually take the time to listen to you.
akrohn
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Post by Sarah Sat Jul 30, 2011 3:16 am

It's no wonder that you're feeling so down. The doctor sounds rubbish too (but then, I think so many are when it comes to migraines). I've taken Sanomigrain, but it was years ago, when I was a teenager. It didn't help me with anything other than putting on a load of weight, but I lost it again after I stopped taking it.

Sarah

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Post by whitzendJane Sat Jul 30, 2011 5:33 am

I agree..no wonder you are cheesed off..who wouldn't be in your situation.You are having a terrible spell of it.

WHen is your next neuro appointment due? Can you at least get it moved forward by emailing or ringing the consultant's secretary and saying you have had a complete relapse? You could try and get the GP to ring on your behalf but I would suggest hubby does that for you after the last visit.
I am not defending the GP but once you get past their local knowledge of classic migraines, unless you are very lucky, most GP's haven't been trained in anything else but the basics. It's not that they don't care, just that they haven't the skills to know the in's and out's of every type of illness..a headache specialist is the person you need to speak to when your condition is rare or chronic.

I know getting hold of the consultant can be tricky but you really need to let them know how things are..I don't think it's something a GP can prescribe for at this stage without the OK from the Neuro.

You're not whinging or moaning..just really struggling with a difficult set of symptoms...and the neuro should recognise that.

My best wishes to you..please let us know how you get on with everything.

((((HUGS))))))

Jane
xxx
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Post by Tee Sat Jul 30, 2011 8:33 am

Big BIG Hugs hun Hug

You really are having a bad time of it - no wonder your down - and I think what Jane has said is perfect - you need to get in contact with your neuro ASAP. Get hubby to call / email his secretary, you maybe able to get a telephone consultation, if not an urgent appointment. My consultant has in the past helped my via a phone call and even changed my drugs for me.

I have no experience of Sanomigrain Sad but am of the belief you have to try everything - one is going to work one day Smile But again I think this is something you need to talk to your consultant about.

Do let us know how you go on

Tee xxxx
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