Worried about taking medication for RLS

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Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
reliefis#1
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Joined: Wed Jun 28, 2017 2:59 pm

Worried about taking medication for RLS

Postby reliefis#1 » Fri Jul 21, 2017 1:21 am

I've had RLS for 18 years. I was prescribed clonazepan 1 mg but most of the time I took .5 mg and it worked for me until three months ago. My primary doctor wanted to take me off it because she was concerned that it would cause dementia or alzymers. The reason I wanted to go off was because it was no longer helping my RLS and it was causing some memory loss. Although now I believe the memory loss was from lack of sleep. She was glad I wanted to stop taking it. But, she never told me not to go "cold turkey". BIG mistake. It was terrible! Finally I learned how to properly taper off on-line. I suffered through the withdrawal on my own. After a month of withdrawaks, I asked my doctor for help since no sleep was effecting me. Bad moods, stress and anxiety, depression, you name it, I had it. Sleeping during the day was out because I am a care giver for my 91 year old mother. The doctor put me on ropinirole 2 mg. That was bad!! I felt as if I was having an "out of body" experience. The body was asleep, my mind was awake. I went on line again and researched. I learned that you have to start ropinirole at a low doze first. The effects of Ropinirole lasted two weeks and I augmented. I went one week with terrible RLS, headaches, anxiety, you name it. Out of despiration, my sister who was taking gabapentin 300 mg for back injury offered to give me a few pills (I know better than to take someone else's meds, was desperate ) until a saw a neurologist so I took the offer. I have been taking it for one week. It worked! Except I am having terrible dizziness and blurred vision. Can someone tell me how long they went through the side effects of gabapentin. Will they eventually subside? Thank God for this site. I check in every day. It has been a blessing! I never bothered to educate myself about this decease. Now I know! I am going to educate my doctor or find a new one. Thank you!!!

sleepdancer2
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Re: Worried about taking medication for RLS

Postby sleepdancer2 » Fri Jul 21, 2017 8:34 am

I understand your reluctance on some of the meds. Many here have also had some negative experiences. I took gabapentin for a few months but I was unwilling to tolerate the side effects at a higher dose that might be more effective. How one experiences side effects is so individual - some report being able to tolerate it just fine. I'd just like to mention that it would be a good idea to get yourself to your own personal best as a baseline upon which to decide how much help you really need. That would start by making sure your ferritin level is up near 100 and stays there. People with RLS are recommended to keep their ferritin higher than what is acceptable for the general population. Have things like your B12, Vitamin D and Magnesium tested. It may be that with these health endeavors you could get by with a lower dose of whatever medication you use. Doesn't hurt to try.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

stjohnh
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Re: Worried about taking medication for RLS

Postby stjohnh » Fri Jul 21, 2017 5:27 pm

Lots of folks (me included) take lower doses of several RLS meds. All effective RLS meds have significant side effects. Taking lower doses of several meds frequently can control RLS symptoms with fewer side effects than higher doses of one med. Ask your doctor about taking the lowest dose of ropinirole combined with gabapentin.
Blessings,
Holland

Polar Bear
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Re: Worried about taking medication for RLS

Postby Polar Bear » Fri Jul 21, 2017 7:03 pm

reliefis#1 - I also use a cocktail of medications. Ropinerole, cocodamol and SR Tramadol. Also 300mg clonazepam at bedtime. It all sort of works. I'm still up during the night, sleep is not good. My ropinerole is of too high a dose as I started it long before it was decided that 1mg should be the max daily dose. However, I more or less can work with, and around, my medications. The point I'm really making is that I agree with the suggeston of lower doses of several medications and thus avoid as much as possible the side effects.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
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Re: Worried about taking medication for RLS

Postby Yankiwi » Sat Jul 22, 2017 5:22 am

I agree, I take a low dose of ropinerole, 100mg of SR tramadol and codeine for movies, concerts and long rides. I combine the drugs with stretching and reading several times in the night but for me that's preferable to augmentation, which I've had but cut back on the medication in time.

ViewsAskew
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Re: Worried about taking medication for RLS

Postby ViewsAskew » Sat Jul 22, 2017 8:35 am

I have had horrifying experiences with medications....and I have had very good ones. Ultimately, for me, it came down to quality of life. We all have to be comfortable with our choices. I was too tired to work when I had no medication. I lost too much of my life. Medication, the right ones, allowed me to work again and have some semblance of a meaningful life. And, oddly, the one medication that caused me the most trouble is one I take now - but in a very different way. It is not always just the medication, but other factors, too.

To get from the horrifying experience to the good one - for me - meant I had to learn a LOT about the medications, the disease, and the interactions between them,and so on. I had to stop putting all my faith in a medical provider. And, eventually, i had to decide to see a specialist who really knew what he was talking about - and that meant flying from Illinois to California. It sounds as if you have already decided that you need to educate yourself, too, and find a better doctor. Hope you find a great doctor locally.

In terms of gabapentin, some people start with 100 mg and increase it every 4-7 days.You might find that just 100 or 200 mg is enough. And, if not, you can either combine with other things as already discussed or just take a bit more of it once you are used to it.
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.

legsbestill
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Location: Dublin Ireland

Re: Worried about taking medication for RLS

Postby legsbestill » Sat Jul 22, 2017 8:09 pm

I have heard that the unpleasant side effects of gabapentin do wear off for many. I'm sorry but don't know how long that takes. I hope you find a good solution. You have had some great advice already. A cocktail of meds each at a low dose is often most effective (as already advised) but there are also many who have good outcomes on single dose of one med and it may be that you just need to give the gabapentin some time to settle down. I would definitely second the suggestion of getting your serum ferritin levels checked and supplementing your iron if necessary.

reliefis#1
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Joined: Wed Jun 28, 2017 2:59 pm

Re: Worried about taking medication for RLS

Postby reliefis#1 » Sun Jul 23, 2017 12:01 am

I truly appreciate the response from everyone. Until now, I have been pretty much on my own. I now feel that I am not alone! Unless you have this desease, it can not be appreciated how challenging it can be. My body is very sensitive to new medication. I guess that is why it reacted so quickly to side effects. I had no problems with taking clonazepan for almost 15 years for RLS. Then slowhy it stopped working. I have an appointment to see a neurologist. I am going to ask if I can go back on it. Perhaps on a higher doze. I was taking .5 mg at bed time. I know it's hard to believe that such a low doze worked for such a long time, but it did. My doctor wanted me to get off because she read studies that it caused dementia and alzymers. Some medical reports challenge that finding. Also, I was on ropinirole .25 mg for about 2 weeks. It felt as if the RLS was returning and much stronger. I was afraid of withdrawals so I went off it on my own. As I originally wrote I happen to get some gabapentin from my sister. She had it for back spasm. I am axious to see a doctor and get some professional advise. However, I don't know what to say to him. I will definitely ask about the serum ferrin level test. Will let you know. Thank you for responding to me.

legsbestill
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Re: Worried about taking medication for RLS

Postby legsbestill » Mon Jul 24, 2017 12:17 am

It was the same for me when I found this site. The relief and affirmation of discovering that I was not alone was wonderful and the support from everyone was highly influential in giving me the confidence to devise a system that is currently working reasonably well. I hope the return to clonazepam is successful.

Stainless
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Re: Worried about taking medication for RLS

Postby Stainless » Mon Jul 24, 2017 3:20 pm

Reliefis#1, We have very similar histories. I took .5 mg. clonazepam for about 10 years, I mg. for 5, 2 mg. for 5 and had just been raised to 3 mg. I thought it just helped me sleep but I later found it also helped control the disease and had no side effects. I asked my new doctor about the Alzheimer's study and was put on 4 mg. gabapentin and told to wean off over the next six months. I didn't like the gabapentin but got used to it. I'm pretty spaced an hour after I take it but OK by morning. I quit clonazepam when down to 1 mg. and didn't sleep for a week. Went back on 1 mg. and weaned off in 3 horrible months.

Gabapentin could not control rls by itself. Soon I was on 4 mg. extended release ropinirole but it changed my rls to almost an all day affair. I got sleep but it was not great. I stuck with this for a year and the doctor suggested going back on clonazepam. My daytime rls is back under control, I'm sleeping well and my rls is mostly controlled except 7 pm until I go to sleep a few hours later. It cycles from pretty good to pretty bad. The gabapentin helped control pain in my thighs and that has slowly got better over last few months.

My research into the link with Alzheimer's showed there are conflicting views in the medical community. I know it is something I would rather not take but it is what it is. Current doctor will not prescribe more than 2 mg. so I'm staying at 1.5 mg plus 8 mg. gabapentin. I hope to lower the dose soon. For the first time I tried bumping the clonazepam to 2 mg. while traveling and back down when home and that worked OK. Best of Luck to you. I hope you are able to do what I could not. Rick

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Tue Jul 25, 2017 9:03 pm

Hey there reliefis#1. I am going to emphasize the ferritin test. Some labs report ferritin levels of 20 or more as normal, but as the others have said, that's too low for people with RLS/WED. So, ask for the actual number when you're given your results, don;t accept "normal" as the result.

You can supplement vitamin D up to 4000 IU daily without a blood test, in Canada anyway. That is another thing to consider doing; D and iron have both been shown to play a role in WED/RLS.

The effects of magnesium on WED/RLS so far are known only from anecdotes, without validation by studies, but some people have found addition of Mg supplements to be helpful.

I hope you can push your way thru this, and learn as much as you can, so you can protect yourself from well-meaning but ignorant doctors.
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
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reliefis#1
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Joined: Wed Jun 28, 2017 2:59 pm

Re: Worried about taking medication for RLS

Postby reliefis#1 » Wed Jul 26, 2017 2:10 am

Thank you all for your responses. A saw a neurologist yesterday, Jul 24th. He was very understanding but said I need to see a movement disorder doctor. What ever that is. Anyway, there was one there so I have an appointment in 30 days. This is a Neurology center so there are about 8 doctors who specialize in neurology. He also gave me a script to test my serum ferrin level. He also tested me for dementia and alzymers. What that has to do with RLS is beyond me. Anyway, I passed. No dementia. Don't need anymore problems right now. The only concern is that he took me off gabapentin (gives me terrible constipation). I have a torturous colon. Don't have any problems with it but must remain regular. I can do that with a fiber diet. He put me back on repinirole .25 mg. He said a low dose will lessen the side effects. Tonight is my first night on this. I think I augmented on repinirole about a month ago. I was trying to get off this medicine. I agreed to try it again because I think I went off too soon. Did not give myself an opportunity to adjust. He didn't want to put me back on clonazepan. I guess it had to do with the alzymers issue. Maybe that is the reason he tested me for it?? Anyway, I am nervous. Will see tonight. Right now I am stalling going to bed. Afraid of side effects. Will let you know.

Rustsmith
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Re: Worried about taking medication for RLS

Postby Rustsmith » Wed Jul 26, 2017 10:27 am

Hope your night went well with the medication change and that your are able to manage for the next 30 days until you see the new doctor.
The reason you were referred to a movement disorder specialist is because these are the neurologists who specialize in treating neurology disorders such as RLS. So this could very well turn out to be a good move for you. Hopefully this new doctor is knowledgeable about RLS, is willing to use any of the available meds for treating it and will consider your history with gabapentin and augmentation on ropinirol.
As for the dementia testing, you are correct that he did this because of your past history with clonazepam.
Steve

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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.

Stainless
Posts: 97
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Re: Worried about taking medication for RLS

Postby Stainless » Wed Jul 26, 2017 7:51 pm

The test for dementia comes from a big Canadian study; Benzodiazepine use and risk of Alzheimer’s disease.
You can read it at http://www.bmj.com/content/349/bmj.g5205
It is a study of records of patients as opposed to following patients. The question they did not answer is whether it is the medication itself or is it people who end up on benzos are more prone to end up with Alzheimer’s.
University of Washington did a study that is discussed in this article; Benzodiazepine dementia risk refuted.
http://www.news-medical.net/news/201602 ... futed.aspx
This was a smaller study but had more input from the prescribing doctors.
All this turned my world upside down as I approached 60. If you find something that works for you, let us know. Rick

reliefis#1
Posts: 22
Joined: Wed Jun 28, 2017 2:59 pm

Re: Worried about taking medication for RLS

Postby reliefis#1 » Thu Jul 27, 2017 12:32 am

I took the repinirole last and it did not go well. I started on .25mg. I don't have the RLS but I was wide awake all night. My whole body itch. No rash. I called the pharmacist and asked about the side effects. I was taking the gabapentin up to the night before I started on the repinirole. He told me to try for a few more nights before I called the doctor. How long did side effects last for those of you who are this med. I also have burning feeling in my esophagus and stomach. I do suffer from gastritis once in a while. I have managed to keep it under control with diet changes. I have a few issues. Gastritis, torturous colon all as a result of stress. But I succeeded in controlling both and get off the Nexium. Nexium is also bad news. It stopped working on me after 10 years. Actually augmented on it. No one told me that I shouldn't stay on it that long. Changed my diet and got off the stuff. Lesson learned. Always check the meds the doctor gives you on line. Educate yourself! Please let me know about the duration of side effects for repinirole. Would appreciate it. Thank you. By the way, I have one more question. Does anyone have a senior family member on lorazepan? I know it's in the same drug family as clonazepan. My 91 year old mother's doctor prescribed lorazepan 2mg per day about 10 years ago for stress. I have the same doctor. She wants to take my mother off the medication. Also because of alzymers. I asked her not to. I am concerned about the withdrawal. I feel that at her age, my mother's quality of life is more important. She was tested for memory loss. No sign of dementia or alzymers. She is smart as a whip. Just asking. Thank you.


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