Oh Kim what a truly revealing article. I wish I had written it because it is exactly what I am going through now. Thank you Kim and I wish you all that I wish for myself and more for your bravery. I did not want to reveal all, especially 'the electric shock sensations'. I am 76 this year and didn't think anyone would understand. My GP although helpful did her best before referring me to a Neurologist. I tried various drugs (including Dopamine agonists) and all made me so ill I could not function. Finally after the the patches failed the Neurologist got really cross with m. She gave me Amitriptoline and I suffered horribly until I reached the point when I could not swallow due to a swollen mouth and throat. I can't go back there so back on Clonazepam which is my only temporary relief. Have only posted rarely but follow everyone regularly. Bless you all and hope the programme on Tues. evening will help as many as possible.
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dojen
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Hi dojen I am glad that you found my article helpful but sorry also that you are having the exact same sensations. I am lucky as my RLS is well controlled 90 % of the time with my meds. The Neurologist was wrong to get cross with you that is unacceptable behaviour from someone who is supposed to be helping! Have you tried the pain meds such as Codeineor Tramadol? Amitriptyline only makes things worse for the vast majority of us. I hope that you are able to find something to help and glad that the Clonazepam at least provides a little relief.
It is very sad-making to read of your travails. Your health 'carers' should not behave in this ignorant manner. I really hope you find something that works effectively for you.
I can only suggest that you try the FODMAP diet but check with your GP to make sure she/he is happy with you going on a fairly restrictive diet. It might not do any good but wouldnt it be great if you lose your symptoms. Its worth a try. It costs almost nothing and there are no drugs involved. I dont know but I think you should stay on all your medications and adopt the diet. By the time of your next visit you might have some improvement. If it doesn't work what have you lost? Eating onions for three weeks? Looks like a good bet to me.
Don't go back to the same mad neurologist and next time demand more respect!! She is only a person who studied neurology, not even a distant relative of God. She is annoyed and embarrassed to find herself incompetent to cure a common malady.
Thank you so much to the three replies I had to my post. You were all positive, helpful and so knowledgeable. Graham you did make me laugh, but for sure I am going to do some research to find a Neurologist with an interest in RLS. So !!!! Come on Dojen, you can do it cos you are not past it yet. Looking forward to tonight's programme.
You are most definitely not past it and it sounds from your brief description that there are many avenues of treatment still available. If you are following the various postings here, you will be assimilating a lot of information. It may be worth ordering the book Clinical Manual of RLS by Buchfuhrer, Lee et al. to bring with you to future medical appointments.
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