It's time to write a letter...

[taniabacon]

I have decided that, having drawn a blank everywhere, having spent so long as an in-patient on a psych ward and come out little better and with my RLS now rampant throughout my body exacerbated by panic attacks, with 'my' neurologist having put me on iron for 3 months, 1 x codeine at night...and 10mg amitryptilline, the time has now come to beg for help from the wise doctor in the States who is caring and may have some ideas. How do I go about approaching him? I know many of you have contacted him in the past. Please help!

[Madlegs1]

Well!------ the first thing he will say , is -- GET OF THE AMYTRIPTOLINE.

So- don't be wasting his time until you have your own house in order.

To reach him , go to

rlshelp.org

and use the email icon you will find there. Keep it short and to the point and with all relevant information.

Cheers.

[taniabacon in reply to Madlegs1]

Stopped taking it last night. x

[Hidden]

You do need to get off that Amytriptyline that is probably making your RLS worse.That will be your first step, and your neuro obviously doesnt know enough about RLS or what needs to be avoided which can make things ramp up. One codeine at night, what is the dose..? Dr. B will say the same about the ami.

[taniabacon in reply to Hidden]

30mg codeine. I am afraid I took an extra one yesterday lunchtime with 0.5mg lorazepam, which I am jealously guarding as they gave me fewer than 14 when I left the hospital, but I was going mad with the constant numbness, tingling and inability to sit or lie down which is what the anxiety is doing to me, on top of the RLS pain and 'fizzing'.

[Hidden in reply to taniabacon]

Are you on any other psychotropic medication, (like olanzapine, etc)?

Also you could argue for the use of Lyrica - for anxiety and to help balance the mood which could help the RLS.

Have you a CPN or Social Worker? If so get them onside and get them to advocate on your behalf.

Make sure you use decent English with no abbreviations when you contact Dr B, he's a stickler for that or so I've been informed. He is very helpful, (especially considering he's working for free) and is more use than any GP you're likely to meet.

Good luck.

[taniabacon in reply to Hidden]

Have gone on the website, but when I click on the email icon, I just get a white screen, that won't let me type anything on it.

At the moment I can hardly see, because I need a second cataract operation, so I'm a little scared of trying to write a letter, but maybe that's what I will have to do. I am going to ask my psychiatrist for pregabalin, she has a copy of the neurologist's letter, I am certain the lithium is contributing to my symptoms now. There doesn't seem to be a single anti-depressant on the list available in the UK that isn't suspect...except for Trazodone which I was on for 6 or 7 months with no benefit.

Thanks for all your good advice.

'I'm going to start reducing the lithium tonight by 100mg.

[Joolsg]

Ditto everything that's been said above. Neurologist is ill informed if he's put you on amitriptyline. My old MS neurologist did the same and I didn't sleep for a week. I sacked him.

Lyrica/pregabalin would be a very good option for you, as Raffs wisely suggested. It will stop the panic attacks and helps sedate you enough to get some sleep. It dampens down RLS as well.

I really hope you get the drugs you need that will stop the dreaded RLS.

Well done for getting off the dopamine agonists Tania.

Now you just need the right drugs to stop RLS.

I'm on OxyContin 10mg twice a day, 5mg at 2am and 75mg pregabalin at 8, 50mg at 8.30. It stops RLS in the day and I get some good nights sleep as well.

Hope this helps.

Thinking of you.