Greetings from SBROOK in Ottawa Canada

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Joined: Wed Jul 04, 2018 7:27 pm

Greetings from SBROOK in Ottawa Canada

Postby SBROOK » Thu Jul 05, 2018 7:04 pm

I have been an on and off member of RLS Foundation since about 1993.

My earliest memories of RLS go back to probably when I was about 6 years old watching TV and my parents telling me to sit still ... with the question "Have you got ants in your pants?" The doctor's comment that my mother accepted for years was "growing pains". Oh how times have changed.

My sleep was always disturbed. It was quite common to wake with covers strewn across the floor, and parents shouting at me to get up while I was still very tired.

There were times when it was worse than others.

I went to university and decided that this couldn't go on, so went to the doctor ... who prescribed valium. Which sort of worked for a while, but needed ever increasing doses, until I couldn't function. The valium contributed to chronic depression. So, now we add a tricyclic antidepressant to the mix, which didn't do much for the depression and sent the restless legs through the roof with morning and arns augmentation. The mess meant that I only got my degree by the skin of my teeth. 1 mark lower and it would be gone. Started my first job. After 4 months of late arrivals and inability to focus on the job at hand and a struggling business, I was let go.

I stopped all meds cold turkey ... realizing that the baseline RLS was better than the treatment ... and got a new job. I coped on and off like that for about 15 years.

Job was transferred to Colorado ... and a new doctor decided to try something different ... and I was introduced to Sinemet.

It was nothing short of a miracle. A single 100/25 tablet and 20 minutes later I was comfortable.

Then I changed insurer who would only pay for the new generic Sinemet. I was up and down ... sometimes it worked great, others it was ineffective. Sometimes I would be fine the next day, sometimes, I'd have morning augmentation.

So, after reading that high doses of sinemet might cause augmentation, I reduced the dose to 1/2 of a 100/25 generic tab. Now it worked enough to ease the intensity but tended to cause less augmentation.

Went to a neurologist who decided to try a different medication which has since been removed from the market ... one small dose had me sitting in front of the toilet as if drunk for about 6 hours overnight. Never again!

I found that stopping sinemet for at least a couple weeks would ease the augmentation and all would be good for another 12 months.

Gradually the urge to move was replaced by a dull but intense ache about 6 years ago. Nothing seemed to relieve it. About 6 months ago I stopped sinemet and the ache gradually reduced to mild and manageable, and curiously apart from the odd day, the characteristic drawing/twitching of the restless legs did not return except for the odd day. Those nights, I'd take 1/2 of a sinemet. I've taken 1 dose every couple months.

What changed? I don't know. What's to come? I don't know! Just have my fingers crossed!

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Location: Los Angeles

Re: Greetings from SBROOK in Ottawa Canada

Postby ViewsAskew » Fri Jul 06, 2018 8:47 pm

I wonder if your serum ferritin or blood iron levels improved in some way. Whatever, so happy to hear!
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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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Greetings from SBROOK in Ottawa Canada

Postby badnights » Fri Aug 03, 2018 5:35 am

I just read your story and love hearing stuff like that. You're not "textbook"; hearing from people like you helps everyone to understand how the disease can vary from person to person. Also to understand that it's not inevitably going to get worse and worse until we die.

You don't mention if you're male or female or your age, but maybe a female after menopause might experience a reduction in symptoms, since there seems to be some sort of hormonal involvement at least in the women who get it only when they're pregnant, or those of us who get it worse just before our period.

How interesting that you kept on such a low dose of levo-carbidopa, and were able to stop it completely, and have only very rare symptoms now. It all makes me wonder what the controls on this disease really are.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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