A History of RLS

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Joined: Wed Jul 04, 2018 7:27 pm

A History of RLS

Post by SBROOK »

I know that I've had RLS for over 60 of my 67 years! When young my parents were sure I had "ants in my pants" then that became "growing pains" and then that became "stress". I never slept well ... tossed and turned and invariably covers would end up everywhere but on me!

When I got to university, it became too much to cope with, so I went to the doctor and he decided I needed something to help me sleep (Mogadon - aka nitrazepam ... a relative of valium) and during the day, valium. Initially it helped, but gradually the dose needed increasing. Long term valium use breeds dysthymia ... chronic mild depression. The more depressed I felt, the worse the sleep, the worse the RLS. It was hard enough getting doctors to believe "restless legs", let alone the augmentation in the mornings with aching twitchy arms.

Next trial was iron ... no effect ... then calcium ... which helped for a short time. Then epinutin (aka dilantin) ... no effect.

Never mind the mild chronic depression, I would now have significant depressive episodes. Nearly cost me my degree and cost me my first job after only 5 months. So, I quit medications and lived with RLS ... tired and the effects of the long term valium use continued long after I stopped.

Over 10 years later, I was chatting with a new doctor who was knowledgable and tried Sinemet. 1 25/100 tab in the evening ... it was a gift from the stars above until I changed insurance plans and they put me on generic version. Now sometimes it would work, sometimes it wouldn't. Worse, though this was the start of augmentation. I reduced dose to 1/2 tab and although not as effective at relieving RLS at least it was now consistent except for one problem. I was now on a long term dysthymia roller coaster and as that got worse, so did augmentation.

The augmentation changed from arms to all my limbs, and not just twitchy, but a dull persistent ache. About a year ago, I decided that it was time for a drug holiday and stopped the sinemet cold turkey. No significant withdrawal effects ... no worse than the aches of the augmentation so I didn't know the difference. Gradually the augmentation eased, and the RLS did too. It is now rare for me to face that incessant need to move. When I do, I have taken 1/2 of a sinemet. I have taken only 4 of those half tabs in the last year!

I can now live with occasional RLS. Life has improved.

Polar Bear
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Re: A History of RLS

Post by Polar Bear »

What a wonderful story and yet such a sad story. You lost so many years to RLS having to struggle constantly.
And then one year ago..... you found a solution that works for you.
So many what ifs ??
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Location: Los Angeles

Re: A History of RLS

Post by ViewsAskew »

Wonderful results. So glad to hear stories like that.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Re: A History of RLS

Post by badnights »

That gives me hope.
Beth - Wishing you a restful sleep tonight
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