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Re: Newly Approved Device - available in US
Posted: Sun Aug 10, 2014 2:17 pm
by alcharla
Unfortunately, you're right. I'm trying to stop Mirapex. In the process of having the device implanted I was sent home with ninety (!) Percocets. I've learned that if I take one when I begin to get bad symptoms, within a half hour they're resolved. However, when I talked with the pain doctor about an alternative he prescribed 4mg of Zanaflex to take at bedtime. I've slept better than I have for years without being drugged when I get up, but by early afternoon I'm back on the roller coaster. I cry a lot.
Re: Newly Approved Device - available in US
Posted: Mon Aug 11, 2014 12:29 am
by ViewsAskew
alcharla wrote:Unfortunately, you're right. I'm trying to stop Mirapex. In the process of having the device implanted I was sent home with ninety (!) Percocets. I've learned that if I take one when I begin to get bad symptoms, within a half hour they're resolved. However, when I talked with the pain doctor about an alternative he prescribed 4mg of Zanaflex to take at bedtime. I've slept better than I have for years without being drugged when I get up, but by early afternoon I'm back on the roller coaster. I cry a lot.
Stopping pramipexole when you've augmented is very hard. I don't know anyone who's not had difficulty and needed an opioid. Usually the symptoms increase dramatically once you stop the drug, then slowly recede to "normal" whatever that is for you. It takes 1 to 4 weeks most of the time. You can relatively quickly titrate down with the pramipexole, then stop once you get below 1 mg. If you are taking 1 mg or less now, you likely can stop it immediately. But DO check with a doctor!
If your doc isn't up on this, you can write to Dr Buchfuhrer at
somno@verizon.net and ask him how to stop. You can use that to help your doc get on board, possibly.
Re: Newly Approved Device - available in US
Posted: Mon Aug 11, 2014 1:51 am
by alcharla
I've been taking two mg of Mirapex (down from four!). I counted last night and I have sixty 10/325 percocets. I think if I can get by with one or two a day while stopping the Mirapex I'll at least be back to whatever normal is. I've had rls for over 50 years, so normal isn't going to be great. Today I've used baths and exercise to put off taking a Percocet as long as possible. I took one about six pm, so by the time I get terrible, it will be bedtime and I'll take a Zanaflex. Today has gone pretty well with no Mirapex. I'm sure it will get worse before it gets better but I just have to do it. Thanks for the support!
Re: Newly Approved Device - available in US
Posted: Mon Aug 11, 2014 4:06 am
by ViewsAskew
I'm hope it's enough to get through it without a lot of misery. Only time will tell, I suppose. But, the worst is yet to come. I really hadn't any idea just how bad it could get. When you finally stop it, it's likely to be much worse. It doesn't last forever, which is the good part!
Re: Newly Approved Device - available in US
Posted: Mon Aug 11, 2014 5:46 pm
by Polar Bear
alcharla - good luck
Re: Newly Approved Device - available in US
Posted: Fri Aug 15, 2014 4:48 am
by sleepdancer2
Alcharla - just a note to encourage you along this journey. I augmented on Mirapex several years ago. The transitions on meds have always been hellish, but ended up being the only choice. Kinda wish I'd been open to opioids instead of suffering so much. Good luck with finding what will work for you. For me it was a TENS unit. Hope things are better for you soon.
Re: Newly Approved Device - available in US
Posted: Sun Aug 24, 2014 3:37 pm
by alcharla
Last night we went to dinner and a play with friends, who drove. I realized after it was too late to go home that I had forgotten to bring any Mirapex. We left at 5pm and got home just short of midnight. I had a few minutes here and there of rls but overall I did great. I did take a Mirapex when we got home and had a snack. Whether it was the food or the drug, I was still squirming at 2:30am. However, this morning I feel good, and hope to get back on schedule. If I take .5mg Mirapex around 5pm I seem to do ok. I'll try to further reduce it, but find that as long as I take no other drugs I feel a LOT better. The spinal cord stimulator continues to work pretty well. Fewer back and leg issues so I'm encouraged.
Re: Newly Approved Device - available in US
Posted: Sat Aug 30, 2014 1:02 pm
by fek67
We purchased a Tempurpedic mattress last year with an adjustable bed frame. The adjustable frame permits independent elevation of either the head or foot of the mattress and also includes a vibration option. You can vibrate either the head or foot of the mattress as well as along the entire mattress from head to foot. I have severe RLS and found that the vibration options (there are several different "pulsations") only aggravated my RLS.
Re: Newly Approved Device - available in US
Posted: Sat Aug 30, 2014 5:52 pm
by ViewsAskew
I may have said this earlier in the thread (I'm too lazy to go look....), but I honestly think there are multiple "types" of WED - not just the primary, secondary, etc., but some of us seem to HATE physical touch and others seem to need it. Some of us seem to feel pain, and others never do. These differences, I think, are much more profound than the medical community yet recognizes. Maybe I'm wrong and it's all semantics, but I have a strong feeling it is not. For example, I've tried five different alpha 2 delta ligands (what we previously and sometimes still call anti-seizure drugs) - not one has ever controlled my symptoms. But, they work great for others, particularly those who experience WED as painful.
My guess is that there is a "type" of WED that does well with the vibration/massage/pressure, maybe the same (or different) as those who respond to TENS. Another type doesn't respond to any of the above.
That's what makes this disease so hard to treat. We still don't have the types figured out, so we have to try each one of these things to find out what makes ours better.
Re: Newly Approved Device - available in US
Posted: Tue Sep 09, 2014 7:32 pm
by Joanie60
I spoke with Megan at Sensory Medical, manufacturer of the Relaxis, the new vibrating device for WED. The product has been slightly delayed and should be out in mid to late October. Insurance coverage will take longer, but the company is encouraging the distributors to allow us "trial" or "rental" periods to see if the device works for the individual.
I hate to quote much more from our conversation, I do not want to mis-quote, but here is their web site, which will be updated shortly with the new release date:
http://sensorymedical.com/There is data from the clinical trials under the tab: Relaxis for Medical Professionals.
Fingers crossed!
Joanie
Re: Newly Approved Device - available in US
Posted: Sun Dec 06, 2015 4:49 pm
by Herzlein0
alcharla wrote:Last night we went to dinner and a play with friends, who drove. I realized after it was too late to go home that I had forgotten to bring any Mirapex. We left at 5pm and got home just short of midnight. I had a few minutes here and there of rls but overall I did great. I did take a Mirapex when we got home and had a snack. Whether it was the food or the drug, I was still squirming at 2:30am. However, this morning I feel good, and hope to get back on schedule. If I take .5mg Mirapex around 5pm I seem to do ok. I'll try to further reduce it, but find that as long as I take no other drugs I feel a LOT better. The spinal cord stimulator continues to work pretty well. Fewer back and leg issues so I'm encouraged.
Re: Newly Approved Device - available in US
Posted: Sun Dec 06, 2015 4:54 pm
by Herzlein0
Dear alcharla
Sorry for my english -i am austrian .
You posted that you got a spinal cord stimulator implanted and it was Doing Well. You said the scs helped also for rls-symptomes . Can you tell me more about that? Is the stimulator still working and how is your rls today
Best wishes
Herzlein0
Re: Newly Approved Device - available in US
Posted: Sun Dec 06, 2015 5:01 pm
by Polar Bear
Herzlein0 - this is quite an old thread, some of our members come and go, especially if they start to feel better.
I have no knowledge of spinal cord stimulator treatment and how it may or may not help RLS.
I hope one of our members is able to provide a little information in this regard.
Re: Newly Approved Device - available in US
Posted: Mon Dec 28, 2015 4:08 am
by badnights
according to the original post, the device was intended to help with back problems, and incidentally appeared to be helping with the WED/RLS. alcharla has not posted about it again, unfortunately.
The company's site describes the device:
http://www.bostonscientific.com/en-US/p ... stems.htmlbut if you google it, you can also find discussion boards where people talk about its effectiveness for severe back pain, the surgical procedure, the controls, etc.
I don't think I would opt for that solution for WED/RLS without a lot of studies showing its effectiveness.
Re: Newly Approved Device - available in US
Posted: Wed Jul 20, 2016 2:50 am
by tea4one
KDecker1612, I have been using a massager similar to what you described. It is made by Brookstone and is a heated neck and shoulder massager that is cordless and can easily be used on most other areas, lower back, legs, etc. It is a little pricey, but worth every penny. I have fallen asleep with it setting on my hips and legs. It turns itself off after some time, I believe.
Here's a link to the one I have tried. Good luck!
http://www.brookstone.com/shoulder-and- ... 0018p.htmlJ