I'm New Here

Hi,

First of all I am 59 years young and I have never had a headache in my life so possibly this board it not entirely appropriate? However, I am currently waiting to meet (2nd time) with a neurologist for benign essential tremor which has brought an abrupt and total end to my lifelong secretarial career (medical and legal btw - bit ironic). Until last night I was taking Propranolol - no noticeable benefit and this has been switched to Topiramate 25mg at bedtime. This drug appears to be mainly prescribed for treating migraine and epilepsy and that definitely does not appear to apply to me although another mentioned side effect being weight loss would be welcome. There was a time when I could hide my problem by using key strokes on a pc but those days are gong forever and now I simply cannot control a mouse. Just wondering if anybody out there has tried anything else or has any views about medicinal cannabis? Or has any questions I can fire at consultant 16/02 or doc due to see again Wed. or any opinions in general. First diagnosed 2008, seems to have become progressively worse of late, balance shot to bits, 2 recent falls, voice also affected. Have joined group on Facebook but this is USA based, I am Dorset UK and haven't sniffed out any local groups/individuals to me.

12 Replies

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  • im sorry to hear of your problems, there was a program on tv recently (Hospital) which showed a man with essential tremor who was part of a non invasive trial of targeted ultrasound. he had very good results...it might be worth watching, and speaking to the neurologist about imperial.nhs.uk/research/ab...

    all the best x

  • I've only just found my original post, thanks for the link

  • Prof Mark Edwards (previously at NHNN but has now moved to another London hospital) is one of our leading experts in movement disorders, including functional disorders. He is worth getting in touch with.

  • I take 10 mg amitriptoline, initially for anxiety following a sudden bereavement, and conincidentally reduced my tremors.

  • If you look up Sutton Fibromyalgai group it's a pop in on a Wednesday there is a lady there who has the condition,and she is very informed and an advocate for getting information out there about the condition your talking about.

    I have only been to the group once,I have Ehlers danlos syndrome and have chronic pain along with other things ,and I was just looking for some support,or I will see if I can get more information myself for you if you like ?

  • Not sure why the replies have only just appeared yes please

  • yes please

  • posting a link to symptoms of b12 deficiency just in case anything else rings a bell.

    pernicious-anaemia-society....

    If it does then would suggest that you join the PASoc forum

    healthunlocked.com/pasoc

  • nope

  • I hate to frighten you, but has anyone suggested Parkinsons ? Not just the disease persay, but parkinsonian side effects from the Topiramate as it has lots of side effects relating to balance, and motor funtion problems. I appreciate that your tremor has been with you quite a while, but all drugs have side effects, it may be worth mentioning to your consultant. I hope you get some help, your're way to young to be disadvantaged so severely.

  • consultant has totally ruled out Parkinsons - phew

  • Thanks so much everyone for your replies. Seen consultant definitely NOT Parkinson's saw voice therapist Friday having further appointment 5/3 need to get Topiramate increased a bit and see how it goes. Any ESA experts on here?

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