Need some relief.

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

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.
Gale103
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Joined: Sat Feb 25, 2017 2:38 pm

Need some relief.

Postby Gale103 » Fri Apr 21, 2017 5:35 pm

I'm fairly new to the forum here. I've been searching to find what people do to make it through these rls night time episodes that drag on for hours. Lately my episodes last all night and sometimes as of late, into the mornings. Looking for ideas to alleviate the sensations in my feet. Other than pacing I can't find any relief. Help!

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need some relief.

Postby stjohnh » Fri Apr 21, 2017 5:47 pm

Welcome Gale. Lots of good info here. Nearly everyone has experienced what you describe, so don't hesitate to ask for help. I'm sure you will get lots of suggestions. It will help if you give us some details like your age, how long you have had RLS, what meds you are taking now, what you have taken in the past, and what your ferritin level is. This is a terrible disease and treatment is difficult. I'm sorry for your difficulties. Likely it will get better after we get more information and can offer specific suggestions.
Blessings,
Holland

Rustsmith
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Re: Need some relief.

Postby Rustsmith » Fri Apr 21, 2017 7:49 pm

Gale, as Holland says, more info would be helpful so that we can provide more specific suggestions.

But, one thing that you might try is either soaking in a very hot bath (as hot as you can tolerate) or else soaking your feet in ice water. I think that more of us use heat than cold, but both extremes seem to work. In my case, soaking just my legs for 5 to 10 minutes is enough to temporarily turn off the movement urges so that I can go back to bed and fall asleep before they return.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
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Location: N. Ireland

Re: Need some relief.

Postby Polar Bear » Sat Apr 22, 2017 6:12 pm

Gale - I'm of the icy cold treatment.... feet and legs into a bucket of really cold water, cold enough to really take your breath away, splash up as far as you can. It usually took about 20 minutes for the symptoms to subside and hopefully give enough of a gap to let me get to sleep. I now use medication and don't need to do this.

It might just help you. As others have said, some folks prefer the really hot treatment.
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

Gale103
Posts: 4
Joined: Sat Feb 25, 2017 2:38 pm

Re: Need some relief.

Postby Gale103 » Sun Apr 23, 2017 1:36 am

Thank you for all the answers you have given me. I will try both the hot water and the cold water to see if I can get some relief.
As for info on myself,I am 56 yrs of age. Right now I'm taking the drug Hoizant. I take 2, 600 milligram tablets at 5:00 pm. I have taken it for about 6 months now and it's not working as well as it did in the beginning. My rls comes to visit me 1-2 nights per week. Before that it was Gabapentin. I have suffered with rls for about twenty years. I have taken many things over the years and have never had my ferritin levels checked. Will definitely ask about this at my next neurologist appointment. Hope this info helps. Again thank you for all suggestions you have me.

Polar Bear
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Re: Need some relief.

Postby Polar Bear » Sun Apr 23, 2017 8:37 am

It is important to know your ferritin level, and to work on getting it higher if necessary.

Bear in mind that some anti depressants have a negative effect, also some over the counter medications can be particularly bothersome, certain antihistimines, also caffeine, alcohol. Some folks find dietary changes helpful, eg ice cream/sugar is one of these. However, what helps one sufferer does not necessarily help the next sufferer and it's all a bit of trial and error.
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: Need some relief.

Postby badnights » Tue Apr 25, 2017 10:42 am

Hi and welcome. You're lucky not to have RLS/WED visit you every night, though you're not lucky to have it at all. Do you take the Horizant every day? I imagine you must because it can mess with you if you don't maintain fairly stable levels of it.

If you only need medication a few times a week, and if your ferritin levels are over 75 or preferably over 100 ng/ml, it might be safe to take levo-carbidopa/Sinemet. It will work incredibly well, at least at first, but you would need to track your usage very carefully to avoid augmentation. I assume you have read here a bit about augmentation? I would not wish it on my worst enemy. No one can say how much levo-carb. would cause augmentation, especially since it's different for each person, so you might want to be sure you never took it (for example) more than two nights in a row and more than 3 times a week, and really stick to that. I am having a very hard time saying it might be possible to take it safely, because it causes augmentation so easily with daily use, and I don't know of any studies testing how often it can be safely taken. What is clear is that the risk of augmentation is very high (perhaps inevitable) with daily use of levo-carbidopa, that ferritin levels over 100 protect (to a degree) against augmentation on not only levo-carb. but also the dopamine agonists.

The nice thing about levo-carb. is that it works so quickly. The bad things include that it wears off after about 4 hours, in myself at least. The dopamine agonists might be better for you, but you would have to wait 1-2 hr for them to kick in - not very useful if you aren't taking them every night, i.e. if you feel the symptoms and realize it's going to be one of "those" nights, you will have to wait 1-2 hr for relief, by which time the symptoms might have escalated. But the risk of augmentation is much less with the dopamine agonists (DAs), so you might prefer them. Pramipexole/Mirapex, rotigotine/Neupro, and ropinirole/Requip are the DAs used with WED/RLS.

Either lev-carb. or the DAs might work better than Horizant, but the risk of augmentation is real, and no one really understands how taking those meds, even if not daily, might affect our brain chemistry in the long term. The thing that would really work would be an opioid, ideally a short-acting one that you could take when you felt the symptoms coming on. Doctors have issues with opioids, though. fyi neither opioids nor anti-convulsants have been associated with augmentation - only the DAs and levo-carbidopa.

The important thing is to let your doctor know that your current treatment isn't controllling your symptoms, and that approximately 2 nights a week you sleep only 2 hours although you typically get 6-7 hours on RLS-free nights (or whatever the case may be).

Tricks besides hot/cold are exercises that either stretch (not as good) or use the muscles (much better). If it's leg issues, squats might work. Ankles - try heel raises. etc. Avoid triggers like caffeine, anti-histamines, and some kinds of booze (maybe all! I think it's different with different people), ensure your ferritin is up (not only reduces risk of augmentation but reduces severity of symptoms), and address all nutritional deficits especially vitamin D and magnesium. The link in my signature leads to a page where you can download some useful references.
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

Gale103
Posts: 4
Joined: Sat Feb 25, 2017 2:38 pm

Re: Need some relief.

Postby Gale103 » Tue Apr 25, 2017 6:22 pm

Thank you so much for all of the information you have given me. I really had no idea that so many people suffered from this, until I started researching RLS to help myself! I see my neurologist this week and will go with a lot more questions this time. No one in all my years of suffering with this has ever checked my ferritin levels. I wish you peaceful nights!

badnights
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Location: Northwest Territories, Canada

Re: Need some relief.

Postby badnights » Tue May 02, 2017 7:29 am

Thank you:)
I should have mentioned that it is recommended not to seek complete resolution of symptoms with pharmceuticals. It seems as soon as we've medicated enough to cover them completely, the symptoms will get a little worse, so we try to stay at "mostly covered" and live with it.

Knowing what I know now, if I had symptoms only 2 nights a week, no matter how bad they were, I wouldn't medicate daily with anything. Even taking meds only on the bad days, I would not use anything except one of the opioids that I know have minimal side effects in me.
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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