Driving me crazy

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figflower

Re: Driving me crazy

Post by figflower »

Here is what I bought:

Uridine Monophosphate Powder (25 Grams)
from Powder City
1 customer review
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Sale: $14.24 ($14.24 / Count) & FREE Shipping
In Stock.
Ships from and sold by Powder City.
Estimated Delivery Date: Tuesday, July 14 when you choose Two-Day Shipping at checkout.
Size: 25 Grams

• Important Building Block of Ribonucleic Acid (RNA)
• Helps to Increase Dopamine Levels
• Synergistic with Fish Oil
• Supports health and function of liver mitochondria
• Numerous Cognitive Benefits

Dr. Bruce, this is a powder form. I always try to buy my supplements in powder form. Plus I read you get better absorption with this one if you put powder under tongue but that could be B.S. I do it anyways.

If I was desperate out of mind I would take 3/4 teaspoon of the cream of tartar in a cup of water, followed by a glass (large) of tonic water that contains quinine (some brands don't) and an iron pill (iron-bisglycinate not ferrous sulfate) all on an empty stomach before bed. Cream of tartar is the new cure all per alternative medicine gurus. It will cure everything from constipation to fungus. It costs $2.50 on the grocery shelf. Tonic water is relatively cheap and so is the iron. If it doesn't help your wife can bake a cake with it.
After you've taken these things I would lie in bed with your I-phone and google binaural music. There are dozens that are on the internet with some that play for hours. Find one that strikes a cord with you. That seems spiritual and other worldly. Contemplate the possibility that we are souls inhabiting an earthly body and that we came here for a purpose. I sadly and truly believe that we came to earth for "soul schooling" and that long before I inhabited this body I planned on having all of the various conditions that I have and that my purpose is to find a better gentler way of treating these maladies.
Once you have a treatment that you know will provide you with relief when you have an attack then you can begin the slower harder job of up-regulating your receptors that have been down-regulated from the agonists.
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WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Post by WBruce »

I am following all your suggestions. I really appreciate the support. I'll let you know if it helps.

WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Post by WBruce »

Thought I would give a brief update on my progress.
I am now on day 12 of 19 of my tapering schedule. The hydrocodone is stopped and I have lowered my Mirapex by .25mg. Tomorrow I will be dropping another .25mg. (to 0.5mg). I have been getting about 1-2 hours of sleep at night, last night from 11PM to 12:15 AM and again between 4 and 5 AM. Being sleep deprived is one of the worst tortures that I can imagine but taking it day by day and moment by moment.
Anybody out there heard of Seratame? It was suggested by a friend.
Cheers

ViewsAskew
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Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

So sorry you are going through this - you're a trooper and almost through the taper! Yay!
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.

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

I'm not aware of Seratame so googled and see that it is 'an all natural remedy for restless leg syndrome'.
Having tried several different natural remedies without success I'm a bit sceptical but we find that different remedies help different folks and it's a case of whatever works.
Good luck if you try it.

Three cheers to you for your tapering progress, well done.

I am with you on the sleep deprivation having had a total of 7 hours over the last 3 nights myself.

Your sleep deprivation is part of your journey as you head towards your goal.
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

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Driving me crazy

Post by Orrel »

WBruce: I took my last 1 mg. Neupro patch on Sunday night. I used a 1 mg patch for 14 days to
wean off the 2 mg. patch. The neuro told me to keep the last patch on for three days (to take advantage
of any residual rotigotine) This means it comes off tonight(Wednesday) Now I will be flying completely
solo. During the past few days since Sunday, the evenings and nights have not been pleasant but the
daytimes have been completely free of rls. When I was using the augmented 2 mg, patch, I had quite a few
daytime breakthroughs. I can't explain this phenomenon of improved daytime symptoms. I look forward to
improving evening and night symptoms. The neuro wrote a scrip for clonazepan which enables me to get
several hours of (broken) sleep which in itself is somewhat miraculous.

















days which

figflower

Re: Driving me crazy

Post by figflower »

Bruce, this may sound silly but is your lack of sleep due to RLS or the insomnia that comes sometimes with withdrawal? With that said, I will assume it is from the RLS. I know of one woman that would kneel when she got tired of pacing and then would kind of plop over an ottoman and get a few hours of sleep that way. Sleep deprivation is torture. Does your life permit naps?

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

Figflower, I can only speak for what happened when I went through this. The withdrawal of the dopamine agonist increases symptoms dramatically. It didn't matter what I did, what time of day it was - there was simply no sleep. I would do yoga poses because I was too tired to walk anymore, fall asleep in the pose and wake up 2 minutes later with symptoms. It's a torture that no one truly can understand unless you've been there. I thought I knew what bad symptoms were prior to this...I was wrong.

Great news, Orrel, that you have improved daytime symptoms and glad the clonazepam is helping you some, too. In another few days, you'll be through the worst of it and then will know how severe your symptoms are and decide with your doctor what to try next. Maybe the gabapentin and sister drugs will work for you now - or maybe you won't need them!
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.

figflower

Re: Driving me crazy

Post by figflower »

Yes View, that is your own individual personal experience. But like I said on here before, when it comes to RLS we have more in common than not. So let's talk physiology for a minute. When we stand and walk dopamine is released to balance us and coordinate movement. I noticed one time that when I was standing AND leaning, I still had some RLS. I guess my brain did sense a balance issue when I was leaning. And like I said on here before, I tried a slant board (feet higher than head) one time during an attack. I did not have RLS while on that slant board but I think my feet were too high because after a few minutes I found it un-nerving to be in that position. So when I read about that woman who kneels, I thought yes, that makes perfect sense. When you kneel, you're even more off balance (not yoga position where your tush is resting on ankles) than when you stand. Same is true of those pilates balls that some people with RLS use instead of a chair. The micro-motions you make to stay on the ball keep the dopamine flowing. The point is, with each passing day that he is off the meds, Bruce's receptors are up-ticking. I believe that the dopamine agonists are a permanent solution to what for some people is a temporary episode. But you'll never know because the agonists themselves can and do trigger RLS.

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

My point was only about augmentation when taking a DA - that you haven't experience, I do not believe. There have been hundreds of people here who have and they all say the same thing - it just isn't like normal symptoms and normal things do not help during that time. IN 5-15 days, it's a different story.
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.

figflower

Re: Driving me crazy

Post by figflower »

No I have not experienced withdrawal. I have danced with the devil and he kept me awake for 72 hours. Like I said on here before I was taking benedryl, melatonin and Tagamet with a small amount of Remeron (for IBS) at night. The restlessness was in my eyes, my forehead. It was surreal. I would throw my head back in bed and contort my body and eventually give up and get up. Even though I've had RLS my whole life it was always mild and intermittent so I never did research. On that third or forth day is when I finally did some research and read about the iron. But for the IBS I would have gone to Walgreens and bought ferrous sulfate and it wouldn't have worked. Then hopefully I would have continued to do research and found out the culprits. But I didn't buy ferrous sulfate, I bought iron bis-glycinate and it worked until I upped the melatonin to 3mg. Then I needed two pills. Then I got tired of taking iron and did more research and found out what was making my RLS so bad. As I age many more things will trigger it now as well as the usual suspects. ;

WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Post by WBruce »

I dropped another .25 mg off last night and this is my first night with no sleep. 15 min. of walking and 10 minutes of lie down repeated all night. According to the schedule, I have 2 more nights at 0.5 mg and 3 more at 0.25 mg. If I'm not sleeping anyway, thinking about going cold turkey and starting the med free interval tomorrow. Sucks

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

WBruce wrote:I dropped another .25 mg off last night and this is my first night with no sleep. 15 min. of walking and 10 minutes of lie down repeated all night. According to the schedule, I have 2 more nights at 0.5 mg and 3 more at 0.25 mg. If I'm not sleeping anyway, thinking about going cold turkey and starting the med free interval tomorrow. Sucks


It's not likely that a cold turkey from .50 would cause the dopamine withdrawal syndrome thingee (can't think of the exact name); I think it tends to occur more at doses over 1 mg. Should be safe, but might want to check with a pharmacist or doctor just to be sure.
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.

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

Golly - forgot the most important part! So sorry you're not getting any sleep - I remember it all too well. Hope that whatever happens that it's a distant memory in the near future.
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.

ViewsAskew
Moderator
Posts: 16181
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

WBruce - just realized something....I used opioids (with Dr B) about ten years ago to stop the DA horrors. I am one of those people who was initially exceptionally susceptible to the DAs and agumentation. I only needed .125 mg to control the PLMs and the RLS/WED. But, I augmented between 7 and 14 days - I can't remember, just know that by the time I went to the 2 week followup, I already had extra symptoms. I was eventually up to .75 mg - which, was a HUGE increase from my starting dose.

I just realized that I my symptoms are still about the same as they were when I stopped the pramipexole ten years ago, yet I occasionally still use pramipexole (I waited 3 years to do so) and use about .19 mg, so only 50% more than I did when I had very mild symptoms compared to today's level. And, I've used that same dose for the last 7 years off and on.

So, the receptors must reset, even with opioid use. Or else, I'd still need .75 mg, right? Or am I missing something thinking this through (I've taken my nightly meds and am pretty tired - could be misthinking 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.

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