Im losing control of my body...please help

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Since i have been 7 year old (now 26) i have sufferd from hemiplegic migrances, paralising my right side.

For the past year or so it has got bad where i cant speak, walk or even feel my whole body now. I constantly feel like i am going to have a bad turn and forget my own name from time to time. 

I have been to the neurologist who wont even give me a scan and says it just a migrane last year.

On occasion i have woken up and peed without knowing and waking up with my legs shaking and my sight has got so bad i can barley see. 

No one is taken this serious but im terrifed its going to get worst and cant even leave the house in fear im going to have a bad turn and not be able to walk off a bus or speak.

I feel like im wasting the doctors time as he keeps telling me to just take paracetomal.

Please help. 

 

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  • Posted

    I know exactly how you feel.  I have those same symptoms when I have a bad spell.  It is very scary and for that reason I do not drive anymore.  Had too many accidents.  There is not a lot known about hemiplegic migraines and no they are not like other types of headaches.  See if you can find a neurologist who specializes in headaches.  They are much more versed and have much more knowledge about hemiplegic migraines than a regular neurologist.  Treatments vary.  Hang in there and see if you can find a doctor who is familiar with these typed if migraines.  These headaches are quite debiltating keep pushing your dictor.
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  • Posted

    Katie I agree with Susanna,  try & get a second opinion from a neurologist who specialises in migraines. These attacks sound really scary!
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  • Posted

    Thank you (:

    I just feel like I'm wasting their time they just keep telling me it's Normal.

    It can't be normal when you wake up completely paralysed and can take hours before I can move. No matter how many times I go to the doctors they don't listen

    I was going to go private to even get a scan to see if there is any abnormalities as brain tumors seem to happen in my family eg dad grandad and his dad but it's so expensive.

    Can I just ask for a 2nd opinion?

    X

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    • Posted

      Hiya,

      I can't believe they are fobbing you off like that. It's not fair!

      I've just come back from an appointment at the national hospital queens square in London. Try get a Referal there. They diagnosed me with migraine of the brain stem which effectively means my brain stem isn't functioning properly and giving me hear awful symptoms. It took me two years to get a diagnosis, I kept getting robbed off too.

      You should not be on paracetamol that's a joke!

      Can you go to a different gp and get a Referal to a neurologist? Xx

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    • Posted

      Sorry I read that wrong. No neurologist should tell you to take paracetamol for such a disabling migraine. I have been on six different types of preventative meds.

      Considering you've dealt with this for quite some time it most likely isn't anything like a tumour so try not to worry too much, however I'm not a doctor so again request a ct or MRI. I've had both. Xx

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  • Posted

    The doc put me on a few types of tablets....epilum which didn't help and another type that makes you lose weight both have just disagreed with me.

    So when I went back last month he just said try paracetamol and come back in 6 months.

    I seen botox treatment on the TV and asked about that he saysits hard to get it on the NHS now.

    I shall go to the doctors again and ask to speak to someone else

    Thanks

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    • Posted

      Yeh I've been on epilim and topirimate, neither nice. I've also tried flinarizine, pregablin, propranolol but some might work for you. They shouldn't have left you with paracetamol. Defintely go back. Also speak with the migraine trust they are good.

      I'm 27 so similar age to you and it's awful, I completely sympathise with you.

      Hope you're okay

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    • Posted

      I've had two rounds of Botox so there's no reason why you can't
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    • Posted

      Katie,

      Your specialist is just being lazy about Botox, its easy to get it on the NHS you just have to have the right criteria and he should deal with that after what you have had to put up with,

      NAG HIM!

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  • Posted

    Hi Katie,

    As I am someone who has had hemaplegic migraines too, I can also sympathise with you.

    They are not a normal migraine and you get different issues with them too.

    What I have learnt dealing with the medical proffesion is you have to make a nuisance of yourself sometimes to get som action in your favour.

    I agree with Susanne and Robyn, you need to see a proper migraine specialist neurologist, who wont tell you such rubbish as your first one did.

    You need an MRI scan to start with then they can go from there.

    As Robyn knows Flunarizine is my prefered medicine for this as is Botox injections.  This combo for me has proved to be a life changer for me.

    Good luck Katie and nag them drs, Go back to your GP and start to nag him first, dont let them fob you off.

    Take care and let us know how you get on

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    • Posted

      All is well with me now Robyn thanks hope with you too.

      had a bad year last year, it kicked off my HM again when my mum died,

      Lucky for me that my company provides counselling else it would have been many more HM episodes and hospital again.

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  • Posted

    Please comtinue to search for a neurologist who specializes in headaches.  Hemiplegic migraines are very scary.  The symptoms can be very difficult to deal with.  I also have chronic  migraines.  Different medications work differently for other people.  I have tried the Botox shot rounds twice.  They did not work either time.  Well they work for a while and then they didn't.  I ask my neurologist if they were studies being done on HM and he said that they are rare, there has not been a study as of yet.  I suggested that I would be willing to be the first patient in a study especially if the study were to be conducted in an exotic location like the Caribbean !!!!

    he said that he would let me kmow.  I keep waiting.  Please keep pushing for some answers. I also have many test, MRI's etc.  Probably the tests will not show anything except that you suffer from HM.  Keep pushing your doctor!!!!!

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  • Posted

    Hi Katie

    It sounds to me that you need to go down the preventative route stop it before it happens,

    I've just been diagnosed with chronic migraine but never really get a headache I get a number of other symptoms which can wipe me out,

    my neurologist prescribed nortriptyline for me just before Christmas starting on 10 mg a day working up to as much as 70 mg a day I didn't think they were working at first but at 50 mg my symptoms have started to settled down which is good because I have it everyday ruining my business & family life so hopefully at 70 mg they will go it took about a month before I really started to think they were doing anything, the side effects aren't that bad they just make you have a dry mouth when upping the dose mainly and a bit sleepy which is why you have them before bed,

    I found a forum for people taking nortriptyline for migraines and out of 100+ people taking them that reviewed it came back with an 8.4 out of 10 so they must be doing something right just google nortriptyline migraine prevention review you should find it, good luck and remember the preventative take a while to start working so don't give up to soon

    Andrew

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  • Posted

    I think Andrew is right.  You should be on preventive medication as well as rescue meds.  The medication I take for rescue is a muscle relaxer rather than a narcotic base medication.  I also take many medications for prevention.  You have to find what works for you. I have come to realize that medications seem to have its own life form. That is they work for a while and then they don't.  Keep trying different things.  And push your dictor to try and see what works.
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