Driving me crazy

Whether new to RLS 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.
WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Post by WBruce »

I have an appt. with Dr. Earley in July. Thanks so much to all of you who have helped me understand this disease. I will post the results of that appt. in July.
Thank-you, Thank-you, Thank-you

Polar Bear
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Posts: 7846
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Driving me crazy

Post by Polar Bear »

Good luck with your Dr Early appointment, please update us.
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

jul2873
Posts: 399
Joined: Thu Nov 15, 2012 7:32 pm

Re: Driving me crazy

Post by jul2873 »

Oh good. I'm so glad. All the best .

ViewsAskew
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Posts: 16078
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

If you need to vent, ask more questions, or just want to chat, we're always here.
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.

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

Re: Driving me crazy

Post by WBruce »

Thought I would let you know that I saw Dr. Earley today and am starting on a tapering program over 19 days leading to 10 days off all meds! OMG!! looking forward to probably the worst month of my life but I know that it has to be done. Many thanks to contributors of this forum who led me to seek treatment by someone who understands this disease. I am truly grateful for all of you!!! Thanks so much.

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

Re: Driving me crazy

Post by ViewsAskew »

Do let us know the protocol, if you do not mind. It could help others who cannot get to see a doctor such as Earley or Allen.
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.

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

Re: Driving me crazy

Post by WBruce »

Here is the protocol:
Day 1: Reduce Hydrocodone to 15 mg. taken at 8 PM. Continue with Mirapex 0.5mg at 6 PM and 0.5 mg at 8 PM
Day 4: Reduce hydrocodone to 5 mg. Continue Mirapex.
Day 7: Stop hydrocodone.
Day 10: Mirapex 0.25 mg at 6 PM and 0.5 mg at 8 PM
Day 13: Mirapex only at 8 PM (0.5mg)
Day 16: Mirapex 0.25 mg at 8 PM.
Day 19: Stop ALL RLS medication for 10 days.
Basically during the 10 day drug free interval you can expect to have SEVERE symptoms including upper extremities. Do not expect to sleep at all for the first 5 days!!!! Expect to have hallucinations while walking and have a well lighted path. Maybe a half- hour a day of sleep for the next couple of days. By day 8, the symptoms will probably be only at night and some sleep may be possible in the early morning.
He states that it is important to get off ALL the meds for at least 10 days. 14 days would be better he said. He said 25% of people find out that when all meds are withdrawn that they don't need any meds. He will be using methadone if I am in the unlucky 75%. He warned me to never go back to a dopamine agonist as it will pick back up where it left off. He said that the problem with dopamine agonists is that when taken they inhibit the brain from making your own and that is how the augentation gets started.
Anyway, the whole thing is pretty ugly. This is not going to be fun and I am scared to death heading into this thing. Sounds to me that nobody should be on dopamine agonists more than a couple of years because that is when augmentation starts happening.

jul2873
Posts: 399
Joined: Thu Nov 15, 2012 7:32 pm

Re: Driving me crazy

Post by jul2873 »

Oh my. Good luck to you. I am so sorry that you have to go through this. Please let us know how you do.

Polar Bear
Moderator
Posts: 7846
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Driving me crazy

Post by Polar Bear »

You are facing a tough path and I wish you the strength to get through it, you already have the courage.
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

ViewsAskew
Moderator
Posts: 16078
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

Thank you for sharing. That really may help others who cannot get to one of our specialists, but needs to get through augmentation.

And, good luck. Do let us know how you're doing. We'll be here while you're going through it if you need to vent or share.
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 »

Dr. Bruce, do you understand the theory behind RLS? Over a decade ago now, scientists at Harvard Brain Bank autopsied the brains of people claiming to have had RLS during their lifetime. Between this post-mortem, subsequent post mortems and studies of rat brains it seems that we with RLS have ridiculously low levels of iron in our brains, not our bodies. And it seems from studying rat brains that this lack of iron causes the D2 receptors in the substana nigra and putamen to be small and few in number. On the bright side it seems we have plenty of dopamine, maybe more than the average bear, just a bad transport system. The agonists only "down-regulate" our genetically bad receptors ever more.

The first thing I would do if I were you is look at everything that might be making your RLS worse than it has to be. Are you taking any anti-depressants, antihistimines, antacids, statins, digoxin, metformin, sugar substitutes or melatonin? Some people find that having a big meal in the evening will make their RLS worse. Some people have reported that constipation will make their RLS worse. And of course there's that whole theory that SIBO or our gut microbiome might be at the root of our RLS.

The second thing I would do is make sure you are taking a good form of iron, such as iron bis-glycinate and that I am taking it on an empty stomach in the late evening. Whenever I get an attack of RLS I take one iron tablet (on empty stomach) and the RLS is gone within an hour and I'm asleep for the night. For me it is not a cure but it sure works for the night. I am not anemic and have healthy iron stores yet I truly believe that my RLS brain cannot call up any of that iron from my store which is around 100. But when that iron is in my bloodstream (not my gut) then my brain can pick it up and temporarily my shoddy receptors are shored up. Kind of the way Popeye the sailorman is with spinach. :P . Did you know that iron availability has a circadian rhythm all it's own? It drops precipitously by midnight and doesn't begin to rise again until about 3am.

I agree that it is a good idea to stop the agonists and allow your receptors to return to homeostasis. I love the idea of the TENS unit and another woman uses an inversion table. My theory on why these things work is because there is only a drip of dopamine leaving our brains and going down our spines to our peripheral nervous system. That drip may be just fine but then throw a kink into our spines and even less of that drip gets to our legs and arms. Supposedly as we age so do our receptors. The rest of the world isn't bothered by their aging receptors but we are. Not only spinal injuries but spinal surgery and even spinal anesthia can trigger RLS. Then people start on the agonists and in addition to having a bump in the road they are now down-regulating their receptors. I always wonder if people had just avoided the agonists or pain killers if eventually their RLS would decrease or go dormant.

As a doctor have you ever read about scientists who use potassium to evoke a release of dopamine in rats' brains? I know they use a boatload of it for rats, so a banana won't cut it for humans. But I have used (and a few other people too) about 3/4 of a teaspoon of cream of tartar which is pure potassium, in a glass of water, on an empty stomach during an attack and it worked. It didn't work when my stomach was full. 1/2 teaspoon is around the RDA so 3/4 exceeds it. And like any good dopamine agonist, there is no guarantee that if you use it long enough it too may cause a down-regulation of your receptors. Potassium citrate may work just as well but when I read about it, the person said they used cream of tartar and I always try to replicate what they did that brought them relief.

Very recently I have been reading about how to Up-regulate our receptors. Its seems that consistently under-eating or intermittent fasting will up-regulate our receptors, even if you are obese. Supposedly anaerobic exercise will do the same. Then I read that a substance called Uridine 5 monophosphate will not only up-regulate our receptors but will also cause a release of dopamine. It's found in mother's milk and added to infant formula, but it's still mad science in terms of RLS.


Good luck and please as always keep us posted.

figflower

Re: Driving me crazy

Post by figflower »

Hey Dr. Bruce, one more thing. Ever wonder why RLS is immediately relieved when you stand walk. I know I wondered and wondered. Took weeks of research but I think I figured it out. When we stand and walk the brain in a nano-second releases dopamine to balance us and coordinate movement. This release comes from a part of the brain called the meso-cortex not the substania nigra. But our RLS doesn't care where the heck the dopamine comes from. Dopamine traveling down the spine means no RLS. And our brains have plenty of dopamine (just bad d2 receptors in substania nigra and putamen) unlike Parkinson's patients who have very little dopamine and hence uncoordinated movement. I noticed one time that there is no RLS on a slant board when feet are higher than head. Once again, I think our brain is releasing dopamine to try to coordinate what it perceives as an imbalance and thus no RLS on a slant board. Call it what you like, primary or secondary, we all get relief when we stand and walk. So if there were different mechanisms involved, other than the release of dopamine, standing and walking would not be everyone's cure, albeit temporarily. Right? Another interesting fact is that it seems almost universal that people with traumatic spinal injuries (severed spinal cord) will all suffer from what seems like RLS. Once again, I think it is due to the fact that dopamine is cut off where the injury is and never makes it to the peripheral nervous system. So even people who are not genetically predisposed to RLS will develop RLS because of the injury. To me, that once again points to a commonality among all who suffer with RLS...and that commonality is that enough dopamine must travel the length of the spinal column in order not to have RLS. So we with RLS have to either find a way to increase that release of dopamine (preferably by upregulating our receptors) or make damn sure that nothing interferes with that weak stream such as spinal injuries or lesions on the spine from MS.

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

Re: Driving me crazy

Post by WBruce »

Thanks very much for your explanations. A few comments.
1. I don't take any meds other than DA. I have been taking iron and vit C daily for a year and my blood work shows high levels.
2. I exercise regularly and find that running is definitely a trigger but cycling or swimming not so much. Also sleep deprivation is a trigger,
3. The rest of your thinking makes perfect sense and I may try some of the things you suggested.

Have you tried taking baby formula?

figflower

Re: Driving me crazy

Post by figflower »

No, but I did buy the Uridine from Amazon. I have taken it three times so far and will continue to take.

Do you take your iron at night? You wouldn't take an Advil in the morning if you tended to get headaches at night. Many years ago now I was taking melatonin, Tagamet and benedryl almost nightly. I had restless body, whereas I used to have mild intermittent restless legs. After about three nights of no sleep I googled RLS and saw someone on the net who said "just take iron at night, even if you're not anemic, there's something about that free floating iron that helps." The next day I went to Whole Foods and bought iron, one called Easy Iron, because I have IBS-C. It worked that night and every night. Until I upped the melatonin to 3mg from 1mg then I had to take two iron tablets. One time I ran out and Whole Foods was closed so just went to Walgreens. I took one pill and...nothing. Took another one and eventually fell asleep. I totally expected the Walgreens brand to work. I figured I'd rather being constipated than have RLS. But it did not work and I took it on an empty stomach. Of course I went back to the Easy Iron but would experiment with the Walgreens brand. I think it worked better when I tried it with grapefruit. Anyways I got tired of taking so much iron (my stores seemed very high to me when I had blood work done) and did more research. That's when I found out that the melatonin benedryl and Tagamet were giving me restless body. When I stopped those things I went right back to intermittent more mild RLS and now only take iron or potassium when I get an attack.

I assume since you exercise regularly that you are not obese. Obesity and RLS have been linked. Food is a drug, not much different than cocaine and the like. Mother Nature made sure that we got rewarded when we ate because eating is so important to survival. And you know what happens when you take too much of a dopamine releasing substance and you are genetically pre-disposed to RLS. Your bad receptors become even more down-regulated and therein lies yet another environmental trigger - obesity. Not to worry, consistently undereating, even if you are obese "should" fix the problem if you're a mouse. :)

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

Re: Driving me crazy

Post by WBruce »

Could not find uridine 5 mp on Amazon. Says not available. As far as the iron is concerned, I always took it at night and will take again if I need to. Otherwise Dr. E said that my iron level is plenty high.
Appreciate all your suggestions. I'm scared to death going into the next 30 days and will try anything

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