Worried about taking medication for RLS

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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ViewsAskew
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Re: Worried about taking medication for RLS

Postby ViewsAskew » Thu Jul 27, 2017 7:09 am

I haven't heard of itching with it - so cannot comment. The wide awake thing - I had that with a similar drug. It went away in about 2 weeks. Now it makes me sleepy - go figure.
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.

yawny
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Re: Worried about taking medication for RLS

Postby yawny » Thu Jul 27, 2017 6:11 pm

reliefis#1 wrote: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...


reliefis#1, I'm currently helping my 77 year old mother after she decided to come off clonazepam after 14 years on it, and it has been extremely hard on her. We consulted several doctors and followed a slow withdrawal plan from a respected doctor. We went slow, supported her with supplements, and eating a snack every 3-4 hours to keep her blood sugar levels stable. But she still went through hell (her words) and ended up in the emergency room three times because she thought she was dying. She's still on a benzo (5mg diazepam) but not because it helps her original problem. Her body is simply dependent on it. She still feels horrible, and is experiencing withdrawal symptoms almost every day after starting this withdrawal over a year ago, but staying on that last 5mg keeps her from feeling she's going to die. I'm sorry to use such strong language but it's the truth. Your mom might do ok with the withdrawal as do 50% of people, but if she was my 91 year old mom, I wouldn't change a thing.

Stainless
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Re: Worried about taking medication for RLS

Postby Stainless » Sat Jul 29, 2017 1:10 pm

reliefs#1, I totally agree with your hesitation to take your mother off a benzo. I don't know lorazepam but I came off clonazepam at 58, just retired and was in excellent health and conditioning. It was the worst year of my life. A year later I went back on it to get back my quality of life. I made the conscience decision to be on it the rest of my life. Something the very first doctor 20 years ago told me. It meant nothing to me then and everything to me now. My Mom is 89 and I know the battles she faces daily without withdrawal. Best of Luck, Rick

Stainless
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Re: Worried about taking medication for RLS

Postby Stainless » Sat Jul 29, 2017 1:24 pm

And I think you mean ropinirole. It controlled my rls to sleep but turned my world upside down. I kept having to go to a higher dose and then extended release. My first night on it was perfect but that didn't last long.

Maybe your bad night was quitting gabapentin quickly. I have quit with no effect one time but just trying to reduce from 8 to 4 (splitting a tab) set my legs off. I know how you feel and really wish you luck. Rick

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Wed Aug 02, 2017 2:08 am

Thank you all for the very good advise. You are correct, my mother does not need to go through the horror I went through withdrawing on clonazepan. I asked her doctor which is also my medical provider to leave her on it. We lost my father a year ago and she is still grieving pretty hard. As for my problem with these medications for my rls, I really don't know what I am going to do. My body is not accepting the medication. Maybe I just haven't given my body enough time to get used to them? I now realize that I was only on .05 mg of clonazepan for almost 18 years. When I started to feel the symptoms coming I became concerned about increasing to 1 mg. Also I was having some memory laps. The doctor tested me for dementia and alzymers and the tests were good. No memory loss. It was probably from lack of sleep. Been thinking about just staying off the medications. Try doing without them. Iam afraid because I am a care giver for my mother. Sleeping is important. Will speak to the neurologist in 30 days. I don't know how that I'll work out, but it's been on my mind. Tired of the struggle. Anyway, I truly appreciate your input. I have learned allot about my RLS. I pray for a break through soon!!! I'll let you know what I decide. God bless us all.

Polar Bear
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Re: Worried about taking medication for RLS

Postby Polar Bear » Wed Aug 02, 2017 11:09 am

You have mentioned just staying off the medications. Please do discuss this with your neurologist first.
You are tired of the struggle of dealing with medications .... I really really do understand how you feel.

I hate taking all these medications, however, I know that my life would be totally unbearable without them. I just have to think of when I get breakthrough while working here on the Discussion Board, having to jump up and continue whilst jigging from foot to foot. It reminds me of how things were before I had the benefit of medications. Sadly the benefit of medication often comes with a price - and that's the side effects.

Sleeping is so important, please bear in mind that lack of sleeping and insomnia can be a part of the condition of RLS and not just because of the horrible sensations and the need to move.

I look forward to hearing how you decide to go forward on this if you do decide to stop medication.
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

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Fri Aug 11, 2017 1:38 am

I have not stopped taking the medication. After the terrible withdrawal symptoms I experienced when I went off the clonazepan, I have decided to wait and speak to my new neorologist. Three weeks from now. I have been on ropinirole 0.25 mg since June. The RLS is coming on earlier and stronger. Also numbness in the hands and strong hot flashes. The anxiety is pretty strong also. It's prabobly because the 0.25 mg is loosing it's effectiveness. But, I am going to hang on without increasing to 0.50 mg until I see the new doctor. I want to get off the ropinirole. Afraid of the augmentation. I never had a problem with the clonazepan. It just lost its effectiness. Was on 0.50 mg for almost 18 yrs more or less. As I explained before, I was experiencing some memory laps during the last year, but now think it may have been from lack of sleep. Really I don't know. Hope this new doctor can help me. Hate taking medicine. Anyway, will let you know how I survive this.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Sun Aug 13, 2017 3:53 am

I get how you feel. I have a hard time accepting that I need medication, too. I keep looking for ways to get rid of it, or at least ways to reduce it. It's medication that makes me half-normal, though. Without it -- - well, I'm not sure, but I know that I need something besides my will to survive and be healthy.

You're at the maximum dose of ropinirole recommended by at least one RLS/WED specialist (see the paper by Buchfuhrer in my signature link), so your decision not to increase seems like a good one to me. You may already be augmenting, since your symptoms are coming earlier. I augmented in under a week. Are your symptoms starting at least 2 hours earlier than before ropinirole? Do they start up sooner after you sit or lie down? Have they spread to other body parts or increased in intensity? Does your medication not last as long? If you have earlier onset and at least one of the other things, and your symptoms are more severe than before taking ropinirole, then you're experiencing augmentation.

Have you read up on the various types of medication that can be used to control WED/RLS? Have you ever tried one of the anti-convulsants used for WED - gabapentin, gabapentin encarbil (Horizant), or pregabalin (Lyrica)? Maybe one of those would be good to switch to. Be aware, though, that you might not be able to establish the dose you need until your body has adjusted to the absence of ropinirole, which takes 2-3 weeks for most people. Until then, you may need higher doses to control withdrawal. the withdrawal, if you have it, consists of worse symptoms for a while.

I hope the neurologist can help. Just in case he or she is not familiar with augmentation, print some of the literature in my signature to show him - the Foundation's brochures on augmentation, the Foundation's Medical Bulletin, and if you have the time and energy, the excerpt from Clinical Managment. Buchfuhrer's paper is also a gem. If you choose to show him, read them first yourself, and ask for his opinion on certain sections that you feel pertain to you. For example, the part of the Medical Bulletin that discusses anti-convulsants (a class thereof called alpha-2-delta ligands). Good luck!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Tue Aug 15, 2017 12:46 am

Thank you for the advise. I read the information posted on your response. It was very helpful. Especially in the area of finding a new medication other than the dopamine agonists. I've been on 0.25 mg of ropinirole since mid June. So Iam hoping to have less severe withdrawal symptoms. Symptoms have mildly returned earlier in the evening, but I have been able to avoid increasing the doze. I also take 10 mg of belsombra (new sleeping medication) for insomnia every other day and use a natural sleeping aide (valerian root) pill on off days. I've tried gabapentin and it caused constipation and dizziness pretty much all day. I'll wait and see what the doctor recommends. I guess going without taking medication won't work this time. I won't like it, but you are correct. I need quality of life. Again thank you. God bless.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Thu Aug 17, 2017 5:13 am

I wish the best for you. Don't stop reading about this disease; the more you know, the better you can interact with your doctor. Good medical care is a partnership; your doctor's knowledge serves you best when you can tell him/her the things he/she needs to know. With your information, he can make good recommendations.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Mon Aug 21, 2017 7:24 pm

Iam trying not to increase the doze. Iam taking 0.25 mg since June. This week (Aug 20th) I really feel the augmentation. It's been coming but I have managed, especially during the day. I just kept busy. Sleep is less and less. Last night I slept 2 hours. Not even the sleep aid Belsombra helped. I don't see my new neorologist (movement specialist) for another week and half. I don't know if I can hold off increasing the repinirole. Was thinking of increasing it by 0.125 mg. 1/2 of 0.25mg until i see the new doctor. Just don't want to make the augmentation worse. Right now the rls is getting stronger and beginning earlier. Involving arms and legs. Have felt it all day. Also strong anxiety. Any recommendations. Getting worried.

legsbestill
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Re: Worried about taking medication for RLS

Postby legsbestill » Mon Aug 21, 2017 7:55 pm

My instinct if rls is getting worse due to augmentation is to reduce the dopamine agonist. Are you taking oral iron? Raising serum ferritin levels can help a lot although it is not a short term solution. Have you tried kratom? It can be very effective against RLS and can be used as-and-when rather than requiring to be on it full time. It may get you through to the appointment. You can order it online. I believe it arrives quite quickly.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Thu Aug 24, 2017 5:10 am

I would prefer to order kratom and hope it gets to me quickly, rather than increasing my ropinirole dose again. Perhaps you can take time off work or otherwise put your life on hold and just concentrate on surviving the next week and a half?

Or - other people's opinions would be useful here, please - maybe one night take enough ropinirole to get enough sleep, and the next 4 nights no more than you're taking now. I don't know if that would cause a resurgence of symptoms the next night; possibly. And I just pulled the number 4 out of my brain, maybe it should be never again, maybe it could be more often, I just don't know.

I despise being augmented, it is almost the most horrifying torture I can imagine, so I would suffer all sorts of pain just to be sure I would not be making it worse.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Fri Aug 25, 2017 12:32 am

I understand Kratom is now a controlled substance. I did see that it is still for sell online. I increased my nightly doze by 0.025 mg last night and I slept a few hours longer. Iam going to try not increasing it tonight. See what happens. Had test for ferrin level. New doctor has the results. Any suggestions on what I should ask this new doctor? I want to get off the ropinirole. Augmentation is terrible. That is why I have tried not to increased the doze on ropinirole. I think gabapentin increased my problem with heart palpitations. Will see my cardiologist next month. Although from what I read, most side effects of these medications increase heart beats. Will continue to stay informed on this desease. Iam tempted to ask my doctors to donate to the RLS Foundation and become more educated on RLS by reading the input from all of us. There is no excuse for any doctor not to become more informed of any desease their patient has. Even if they just have one RLS case. This is sad. Makes me angry. But, knowledge is power, I will stay on top.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Fri Aug 25, 2017 5:34 am

There is no excuse for any doctor not to become more informed of any desease their patient has. Even if they just have one RLS case. This is sad. Makes me angry. But, knowledge is power, I will stay on top.
Oh how I agree!

Kratom is not illegal everywhere - only in some states in the US and some countries, not others, I think??

Re your doctor - ask for the ferritin number. Take some material with you - not too much, but the Foundation brochure called Augmentation: A Quick Guide is a good one. Also the paper by Buchfuhrer which you can access through the link after my name below this post, and which has a section on augmentation - the paragraph on severe augmentation might be pertinent. I also like the Johns Hopkins printout, which is from their website, but I couldn't find it again when I looked; but unfortunately, the font is tiny.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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