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Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Tue Feb 06, 2018 12:36 am

Steve & Betty I don't know what to say regarding the bathtub soak. I've done the medium hot for quite a while but lately I have difficulty getting in and out of the tub due to osteoarthritis in my left knee due to having broken my left tibia in March 2017 due to having fallen unconscious while sitting on my walker. As a result I have knee pain off and on day and night. Last night, February 4-5th, I had RLS and pain from 6 p.m. Sunday and off and on throughout the day today, Monday.

As you may know, I had been taking 1 Pramapexole (0.25 mg) 3 times a day for just over 3 years, and in this past year it had been increased, as needed, to 3 at night (0.25 x 5). In November 2017, my family Dr. had me cut back on those by 1 per week as he introduced Gabapentin (100 mg.) at 2 capsules to be taken 2 hrs. before bedtime. Once I was down to 1 Prapexole per day, I felt that I had to stay on the .025 mg at bedtime. When RLS continued to be a problem, doseage was increased to 300 mg. Gabapentin while I still continued with the 1 Pramapexole as needed.

Last night I took 2 Gabapentin capsuls (100 mg x2) just before supper and the same again at 10:00 p.m. I did not take any Pramapexole, for fear that Augmentation may have set in. I managed to get a few winks but most of the night was spent getting up and walking the floor. For whatever reason, I seemed to be more rested than my husband by daytime.

Tonight, I have reverted back to the dosage prescribed at 3 Gabapentin capsules (100 mg x 3) around 8:00 p.m. and see if it will work better for me by now getting off dopamine entirely.

Endurance and patience is certainly testing me.

Edith

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Tue Feb 06, 2018 2:15 am

Edith, when you stop taking pramipexole it is guaranteed that if you have even the slightest degree of augmentation then you will not get any sleep without help. This is what happens when you start the withdrawal process from any of the dopamine agonists and gabapentin will not help as the dopamine withdrawal symptoms are just too strong. Only a strong opioid will cover the withdrawal and allow you to sleep during that time, but many doctors are not willing to prescribe these anymore, even if for just the week that it will take for you to withdraw from the pramipexole. There are documents on the Foundation website about augmentation that you could give to your doctor to help educate him about augmentation since even most neurologists are not familiar with this RLS specific issue.

As for the tub, when I am traveling and do not have a tub, I turn the shower on and lean forward so that the water only hits my legs. It isn't as effective and can take longer to get the needed temperature change, but you sometimes have to make due with what you have.
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.

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Tue Feb 06, 2018 10:57 pm

Restlessness started quite early today (4:00 p.m.) so I had no choice but to climb into a hot bath to get some temporary relief.

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Wed Feb 07, 2018 6:15 am

It is now 1:00 a.m. EST, My wife Edith is having terrible RLS. I am wondering if I should give her o.125 Pramapexole or just wait it out. It's been two days since she had any.

badnights
Moderator
Posts: 4734
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Postby badnights » Wed Feb 07, 2018 7:01 am

Don't give her any would be my advice. The only way to get off it is to go through that. Her dose of gabapentin is quite low; perhaps it can be raised? It is not generally very effective in dealing with withdrawal from pramipexole though.

Once Day 3 without pramipexole is over, she may see some light at the end of the tunnel. Definitely by day 5. Taking pram now will just prolong the whole miserable experience. My thoughts, only. Others may differ.

Don't expect sleep, but be grateful for a half hour if it happens. Walk about, find something to do. Don't take any sort of sleeping pill, because the RLS/WED will beat up on it and you'll be walking around groggy with severe symptoms; I can't think of many things 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

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Wed Feb 07, 2018 7:44 am

What are you doing up so late, fellow Canadian? I'm glad that you are, but I should have waited for your response. I did give Edith .125 mg. (1/2 of the .25 mg) Pramapentin an hour ago and the other half ( .125 mg.) a few minutes ago, now I gave her 100 mg. Gabapentin to compensate for that. She also seems to be unusually thirsty. Is that expected? btw We are both in our 80's.

Husband Earl

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Wed Feb 07, 2018 9:17 am

It is now approaching 4:00 a.m. and Edith is beginning to get some relief. I had been wondering if clonazepam might be worth a try since it was something they gave her back in March/April last year as well as percocet but we don't have any of that..

badnights
Moderator
Posts: 4734
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Postby badnights » Wed Feb 07, 2018 5:18 pm

Hi Earl and Edith. I'm often up that late :( but it;s not as bad as it used to be! This disease tends to push the bedtime farther and farther back.

I think clonazepam might backfire while she's withdrawing from the pramipexole, it's a sleep aid and will not help her symptoms, which would keep her up despite the sleep aid. It can become dangerous to be forced to walk about by the RLS/WED but be groggy from the sleep aid - trips and falls are more likely as is banging into walls and doors (been there, done that). so it's a good thing you didn't have any.

There are different opinions on how to withdraw from pramipexole, mainly whether to taper or not. Is it correct that Edith has been on 0.25 mg pramipexole? That is, one full pill? If so, I am not sure that a taper would help. What would help is an opioid. Do you have any around? Maybe if she reduced for now until you can order some kratom? (that's a herb with opioid-like properties and it is effective against WED/RLS). Or, can you get her to a doctor in one of the RLS Foundation's certified Quality Care Centers?
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

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Wed Feb 07, 2018 10:45 pm

Edith has been taking 2 hr. naps today since she woke up at 10:00 a.m. She has been on pramapexole for at least 5 yrs when it was prescribed by a sleep doctor who deals with parkinson clients. It was then gradually increased over time to as much as .25 mg. x 5 or 1.5 mg. up to last November when our family Dr. introduced Gabapentin 100 mg. and had us decrease the other by 1 pill per week. When we completed the withdrawal of the Pramapexole in December, he increased the Gabapentin to 2 Capsules per day (200 mg.) which didn't seem to do much so we felt that we needed to continue with 1 or 2 Pramapexole to quiet the RLS at bedtime. I kept a record for him over the next 4 weeks beginning Dec.22nd when he increased the Gabapentin to 200 mg. to be taken 2 hrs. before bed. Even that didn't help much and we ended up having Edith take Tylenol for pain and 1 or 2 Pramapexole as needed for RLS. He increased the Gabapentin dose in early January to 300 mg. which still didn't seem to do anything and we still had to rely on the Tylenol and a Pramapexole as a last resort. That's when I began to search the web for help and answers which led me to RLS Foundation in early Feb. On Saturday night Feb. 3/18 at 10:30 p.m. Edith had terrible cramping even after her 300 mg Gabapentin and I relented and gave her the usual last resort meds. Even that didn't help. At 1:00 a.m. Sunday morning, I took it upon myself to give Edith 1 additional Gabapentin 100 mg. and by 3:00 a.m. she began settle down and slept right though to 8:00 a.m. On Monday night, Feb. 5th, at 6:00 p.m. RLS started to kick in and I decided to give her 200 mg.then, and 2 more around 9:00 p.m. and held off on the Pramapexole and Tylenol. That turned out to work quite well through most of the day. However, Tuesday night was a totally different story as I chose to go with the 300 mg. as the doctor had ordered and you can read about that in the previous posts.

I am slowly learning from the moderators all of the do's and don'ts in dealing with RLS. I think for tonight I will go with what I did on Monday night without the last resort (unhelpful) meds.

husband Earl

Rustsmith
Moderator
Posts: 2847
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Wed Feb 07, 2018 11:24 pm

Earl, you really are to be commended for taking this level of interest in finding the right combination of medications to handle your wife's RLS. I suspect many of us here on the board do not have spouses who are as interested in helping manage your RLS issues as you are.

Your plan for tonight sounds reasonable, especially since it worked on Monday. But our needs change from day to day, so don't be too surprised if it doesn't work again tonight. That is one of the really frustrating things about RLS, what works at one time may not work well on another day.

As for Edith's gabapentin dose of 400mg (200mg two times), that is still a pretty low dose. Often the starter dose for gabapentin is at 300mg. Personally, I take 900mg at bedtime (in addition to lots of other things for RLS at other times). At one time, I was even up to 1200mg but decided to cut it back to 900mg due to an inability to finish during sex and also a slight loss of emotions (I couldn't get either very happy or sad, just neutral all the time).

Finally, you should think about getting a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, et al. It costs about $30 on Amazon. Although it was written for doctors (and is a good document to share with her doctor), it is also understandable by those of us who do not have MD after our name.
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.

badnights
Moderator
Posts: 4734
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

What does WED mean?

Postby badnights » Thu Feb 08, 2018 12:48 am

Earl asked me what WED is. It's another name for restless legs syndrome. It stands for Willis-Ekbom disease. The Foundation promoted the name change at the request of the International RLS Research Group, and even changed its own name to Willis-Ekbom Disease Foundation. However, changes to disease names take at least 5 years to become established, and the Foundation gave up the effort after 2 years, changing its own name back to RLS Foundation and removing the WED name from all its literature.

But the name of the disease itself is still legitimately WED, or RLS as you choose, so I use both. I don't like RLS because it sounds trivial. As someone wittier than I said, it's like calling Parkinson's disease Shaking Head syndrome. Even doctors who hear the name "restless legs syndrome" can't take it seriously until they begin to dig into it. I don't like referring to this devastating, life-altering disorder by a name that will make ER doctors and the general public disregard it.

The original reasons for changing the name of the disease to Willis-Ekbom disease included the following:
- it is indeed a disease, which is a disorder known to have a physiological basis, as opposed to a syndrome, which is a collection of symptoms of unknown cause;
- describing the symptoms as restlessness ignores the extreme distress caused by the sensations, the unavoidable compulsion to move which contrasts with simple restlessness, and the hyperarousal that makes sleep difficult even when no symptoms are present (but also conversely helps us stay awake and sort-of functioning on only a few hours of nightly sleep); and
- the "legs" part is very misleading for two reasons: the disease is a dysfunction of brain iron homeostasis and of the central and perhaps peripheral nervous system, not of the legs; and symptoms frequently manifest in the arms as well as the legs, and even, for some people, in the torso.

So I say WED/RLS or RLS/WED. I admit RLS rolls off the tongue better; the only way to say WED is as if you were saying "wed", because naming the letters just doesn't work.
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

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Fri Feb 09, 2018 7:33 am

Steve, I just gave Edith another 200 mg. of Gabapentin as she wasn't getting much relief tonight. Hope this helps. This brings her daily dose to 600 mg.

april34
Posts: 21
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Fri Feb 09, 2018 4:27 pm

Edith had RLS all night without much pain, however she has pain when she gets up and uses her walker. She has great fear of falling. I do not know what else to do.

Rustsmith
Moderator
Posts: 2847
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Fri Feb 09, 2018 5:03 pm

Earl, getting off of pramipexole is one of the hardest things that any of us have every had to do. Many describe it as torture, which sounds like a good description of what Edith is experiencing. It is pure misery for a week to ten days with RLS symptoms that are far worse than normal. But once you have been off of it for about a week, things start to get better. Naps become easier and longer and eventually it is possible to get something close to a normal night's sleep.

So, at this point the only thing left is to continue to fight through it the rest of the way. An opioid would help her to sleep, but doctors are so scared these days that they won't give them even in situations like this where their patient is suffering and just a couple of pills would help her get through this.
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
Moderator
Posts: 7002
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Just joined

Postby Polar Bear » Fri Feb 09, 2018 7:11 pm

april34 - it is heartening to see how caring you are for each other as you try to help Edith through this difficult time.
Every day is another step closer.
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


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