Over 40 Years of RLS

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Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Over 40 Years of RLS

Postby Stainless » Thu Jan 07, 2016 11:19 pm

I have had RLS since I was 16 or younger and am now 59. I just dealt with it until I was 39 when the 1st Dr. prescribed Klonopin. It worked great for 20 years until I found there is a significant increase in chance of Alzheimer's in large Canadian study. I spent the last six months getting off Klonopin. That was a nightmare and after a train wreck by going too fast, I did it by a slow taper. Klonopin worked great, no side effects or hangover for me but I increased dose from .5 to 3 mg over 20 years.

I have no other ailments, take no other medications and am in good health but getting fat and weak. I retired 3 years ago and was in great shape until a year ago, but the Benzo taper and withdrawal and now the RLS drugs have taken a toll. I just don't feel much like exercise. So far my weight is steady but I am turning to flab.

Before I started taper off Klonopin, I was on Gabapentin for 6 months and hardly thought about RLS. Gabapentin apparently worked for 11 months, but about a month before I quit the last of Klonopin, the RLS came back with a vengeance. I have always slept well for 8 hours but now have major insomnia sleeping 3-4 one night maybe 6 broken hours the next. But I am not tired and can't take a nap. Now on Carbidopa-Levodopa and off Gabapentin which allows some sleep when my head hits the pillow but up in 3 or 4 hours.

I have tried Requip, Gabapentin, Merapex and now Carbidopa-Levodopa. I have a script to get an iron test before I go back to Dr. this month.

My mother and brother have it to varying degrees. I always just dealt with it. Even when I was on Klonopin I had to deal with it in the late afternoons, then it would back off and then kick in at bedtime. I very rarely worked third shift but it was brutal when I did. Walking works great but for a short time. Now for the first time I am up almost every night pacing.

I'm out if drugs to try. I may try going off all drugs after next Dr. visit this month but need a backup plan. I have read about augmentation and think that happened on Gabapentin.

I appreciate any input and would be glad to elaborate on my experiences if it helps anyone. I did not see this coming and it rules my life right now.

Thanks for any help!

Polar Bear
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Location: N. Ireland

Re: Over 40 Years of RLS

Postby Polar Bear » Fri Jan 08, 2016 5:09 pm

Stainless, welcome to our discussion board.

Augmentaton - Gabapentin is known to be one of the drugs where augmention is not a problem.
It is an anti seizure medication as is Clonazepam/Klonopin which you were taking previously.

You say your current medication is Carbidopa-Levodopa wow !!
I thought that noone continued to prescribe Sinemet (Carbidopa/Levodopa) for continuous use as it will worsen RLS.
I believe the rate for augmentation is around 80%.
Levodopa works very well, and quickly, but is generally only for occasional use.
You should be seeking an alternative medication - or perhaps a 'cocktail' which many of us find works best.

Do you feel your GP is well versed in the treatment of augmentation.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipexole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

You and your doctor need to discuss the benefits and future difficulties of taking levadopa.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Fri Jan 08, 2016 8:10 pm

Thanks for your response Polar Bear. I have become suspect of the Carbidopa-Levodopa because in two weeks I have RLS all day long, bad insomnia and head in the clouds. Dr. prescribed it because Mirapex we were going to try instantly gave me a bad headache and I have tried about everything else. I had experienced this instant headache years ago when I first tried it. Don't really know the Dr.'s experience. I think I am about over Klonopin withdrawal and would like to see what my RLS level is with nothing and try some holistic approaches if I can keep it together. I am scheduled to get iron lab done.

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Sat Jan 09, 2016 12:51 pm

Last night after suffering all day with RLS, I took nothing for the first time in 20 years. I slept for an hour, woke up and took an overdose of magnesium supplement. Like a light switch RLS turned off and stayed off all night. After some insomnia I finally slept and felt better in the morning than I have since quitting Klonopin. I say overdose because it acted as strong laxative. I know this is not a cure as I have taken it before without this result but it gives me some hope of holistic approach. I think I was just making it worse with Carbidopa-Levodopa.

Polar Bear
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Re: Over 40 Years of RLS

Postby Polar Bear » Sat Jan 09, 2016 6:11 pm

I'm glad that you got some sleep. Please check on how much magnesium you are taking, if it is enough to act so quickly as a strong laxative it doesn't sound like you should be doing this regularly. I have read about benefits of a magnesium body spray and would reckon the dosage there would be minimal.

Good luck with a holistic approach - I am unaware of anyone who has had a successful result on the holistic route. (doesn't mean it hasn't happened)
Sounds like you might need to ensure your own knowledge of RLS treatment is as broad as possible and equip yourself for discussion with your GP.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Sat Jan 09, 2016 8:08 pm

Thanks again Polar Bear.

I know I OD'ed on Magnesium but it worked. Don't plan on doing that again and ordered some pills to get a consistent amount. I need to review issues taking multiple supplements.

I don't know if holistic approach will work but I am running out of options and hope never to go back on Klonopin. I surfed today and could not believe how drugged I was by Carbidopa-Levodopa I last took 2 days ago. I hope not to take that again, at least on a regular basis. I ordered Clinical Management of RLS to help me talk to my Dr.

ViewsAskew
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Location: Los Angeles

Re: Over 40 Years of RLS

Postby ViewsAskew » Sun Jan 10, 2016 1:07 am

Many of us find that magnesium has a laxative effect - a normal dose, for me, causes diarrhea.
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.

sleepdancer2
Posts: 206
Joined: Sun Jun 29, 2014 7:46 am

Re: Over 40 Years of RLS

Postby sleepdancer2 » Mon Jan 11, 2016 8:11 am

Not sure if this qualifies as holistic, but it is non pharmaceutical. I have severe PLMD and went through years of various meds and augmentation. For 5 years now I have successfully treated my nighttime legs issues solely with a TENS Unit. I use it before bedtime as prescribed for low back pain, having found it calms my legs for several hours.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Mon Jan 11, 2016 1:53 pm

I watched your video and feel your PLMD Sleepdancer2. I thought mine was severe but it pales in comparison. What TENS unit are you using, I see there are several.

I just finished my third night on no medication and feel better than I have in a long time. I have only taken magnesium so far but intend to buy the vitamins recommended in the literature today after after I get ferritin serum level checked. Maybe the cure was worse than the RLS for me.

Polar Bear
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Re: Over 40 Years of RLS

Postby Polar Bear » Mon Jan 11, 2016 2:47 pm

Stainless - after 3 nights without medication you feel better than you have in a long time. Are you saying that you have not suffered any withdrawal from the lack of levodopa? How long were you taking levodopa?
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Mon Jan 11, 2016 9:49 pm

I only took Carbidopa-Levodopa for 3 weeks. I was taking Gabapentin for the last year when I was tapering off 20 years on Kolonopin. Gabapentin seemed to quit working on the RLS after 11 months, maybe made it worse. Insomnia was the worst side effect. Maybe daytime RLS.

Part of my problem is I can't tell what is the medication and what is withdrawal. I still feel the Carbidopa-Levodopa a little after 3 nights. But part of that might be the Klonopin I quite two months ago. I may also be feeling beneficial RLS effect of the L-dopa. And since my RLS waxes and wanes, it is hard to tell what is what.

Don't get me wrong, I know medication has its place, but I am looking forward to not being on anything if only for a while. Hopefully it will go as well as the last three nights and I will be off of medications forever.

Polar Bear
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Re: Over 40 Years of RLS

Postby Polar Bear » Mon Jan 11, 2016 10:17 pm

Good luck - please keep us updated on your progress without medications.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Location: Northwest Territories, Canada

Re: Over 40 Years of RLS

Postby badnights » Sun Jan 24, 2016 7:14 am

Stainless, I like what you're doing. Have you investigated how long you might have to go med-free in order to be sure you're seeing your baseline WED/RLS, without any lingering effects of the medication? It might be a while, since you not only need time to process the medication out of your body, but also to allow your neurotransmitter systems to adjust to the new chemical state they are in.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Tue Jan 26, 2016 2:56 pm

I lasted two more weeks on only supplements. Besides a multi and magnesium I took some amino acids. My severe RLS continued all day which I never experienced while on Klonopin.

Saw my doctor yesterday who wanted me back on Gabapentin. I convinced her to write a script for Ropinerole which I took by itself last night with amazing results.I had severe RLS when I took it which vanished. It stayed completely gone through the night and into the morning. Hopefully this will continue to work a long time. This was about the last first line medication left to try. I'm going to enjoy it while it is working.

Stainless
Posts: 130
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Tue Jan 26, 2016 2:58 pm

I should also say my insomnia was also gone and I got the best rest I have had in at least 3 months. About ten hours in bed and nine asleep.


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