A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

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Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Rebooted :clap: :clap:
Betty
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debbluebird
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by debbluebird »

Glad you finally getting some sleep and it's working for you. :D

EeFall
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Re: A Stategy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

The last 2 days I have been really hyper although I didn't think about it until this morning. I stayed up until midnight because I was hyper (and didn't think about that either). I had trouble going to sleep and at 1:20 AM I practically leaped out of bed with RLS and I proceeded to pace the floor for a few hours. I left my manager a message on his phone that I wasn't coming in to work today.

I ended up taking my morning pills early which are an assortment of a dozen or so things I have to take but the important one is the 2.5 mg of a half tab of methadone. Today I took an extra half tab which seems to have helped stop the RLS symptoms.

Tonight I think I will take an extra Lyrica unless someone has a better idea. I fortunately have enough vacation hours to use for today but not much more than that so I have to go to work tomorrow. This condition never ends, I should know that by now but I seem to always hope that this time things will be okay. Things are not okay though, using methadone and Lyrica are no way to live out one's life but I have no other choice.

The main reason I am writing this though is a funny, strange, weird idea that I had about this new relapse. Here goes...

If you have followed my other health problems then you know that I now have the ongoing blockage problem in my small intestine brought on by my prostate removal surgery about this time last year. I have been marking on the calendar if I have had a bowel movement everyday for the past month or so to see if all the laxatives, softeners, and fiber I have been taking are working. Everything has been great for the last 6 days then this happens, the RLS suddenly becomes worse.

Many of the medications I take for RLS cause constipation, methadone certainly does and Lyrica makes it worse. I was wondering if there could be any relationship between that and RLS/WED. As I mentioned above, it is a bizarre idea, but I wonder if the fact that everything is working well in my GI tract now has something to do with the WED getting worse. In other words could it be that when my digestive tract is working well that for some reason my RLS is worse? I have had terrible problems because of the blockage (really a portion of the small intestine that is not working, sort of paralyzed) as far as digestion but my RLS has been non-existent (of course I am still taking my methadone and Lyrica too). Then when I have 6 days of my digestion working great I get severe RLS despite taking my medication. So it would be a strange thing if RLS symptoms might be reduced by slowing down the digestion process for some reason.

I guess it is something to ponder :lol:

edit: Actually I think I should take an extra 1/2 tab of methadone and 1 more capsule of Lyrica tonight. The Lyrica only helps with making me sleepy, it doesn't help the symptoms which woke me up. I think the methadone isn't working as well or I am building up tolerance.

cornelia

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by cornelia »

Eefall, I'm sorry to read this. First of course because you suffer again and nobody want that for you.

Secondly because we might have to question a 10 day drug holiday(as laymen of course). Until a year ago it was thought that a DH should take at last a month. My own neuro prefers 2 months to be certain that all meds are completely out of the system.

Then Early and Allen came with research about a 10 day DH, so I thought: çould this be true'? Now, reading your story I'm afraid that it really is too short. And that means that this can happen to other patients. I see that the RLS Foundation gives out a brochure on these 10 day holidays and I wonder who can benefit from this? I mean, if it lasted only 2 1/2 months with you Eefall you can hardly call that a success, although it certainly has been a nice break.

I wish for many reasons that you suddenly remember that you had forgotten to take your meds and that the DH benefit continues for a long time for you! I can't see other reasons other than maybe the stress burden of your other illnesses.

I agree with you that everytime we seem to find something that helps us reasonably we are are overjoyed to find later that it starts working less ans less. It's the story of many people on this board.

Corrie

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

For me, I'd have to compare the outcomes. Does a 2 month holiday give you a 6 months without problems? A year? Two years?

Does a 10 day holiday give you 3 months? 6 months? Let's say, conservatively, that it only gives you 3 months.

If a 10 day holiday gave me 3 months of no problems, I'd be more likely to do that then a 2 month holiday that gave me a year - that's because it's less miserable! Even though I'd have to do it every 3 months, I'd still spend less time than I would with a 2 month holiday (a total of 60 days.) If a 2 month holiday gave me two years without issue, it would work out even, and I'd still prefer the 10 day holiday.

I'd need to get 3 or more years without problems to consider a 2 month holiday. I'd have to take extended leave and know that I'd get NO sleep for 2 months! Knowing I'd get 3 or more years without issue, I'd consider it. A 10 day holiday I can do and only take 1 week plus two weekends - meaning much less time off of work or away from my life, though, so that is very attractive.

The real issue may be how long it took to have problems in the first place. I had issues within a week. I know that a holiday isn't going to make that better - I've always had problems with DAs. I had issues with tolerance in about 6 months. So, if it took 2 months to reset my brain and I only got 6 months before issues....not sure I'd do it.

If, however, I could take 2 months to reset it, then take a ten day break every 5 months to prevent ongoing issues, I would do that.

I am starting to believe that this is the ONLY solution. We can't know who will have difficulty and who won't. But, if everyone took a holiday regularly BEFORE they had problems, then we'd never get into these downward spirals in the first place.

So, take a DA first.

If person had NO issues in the first 6 months, stop it for 2 weeks to 1 month and use an opioid. Then start again. I bet people could take this for many years without issue.

If person HAD issues in the first 6 months, stop immediately when issues start. Use opioid for 1 month. Then alternate DA with opioid as needed (as short as every other day and as long as every 2 months, let's say).

If person couldn't tolerate DA, or couldn't tolerate opioids, try one of the GABA drugs in its place.

All that said, I'm not sure that EeFall is at this point. Remember the research that came out a few years ago that links IBS with WED? People who had IBS and WED benefitted from antibiotic therapy. Just recently, someone said they had less WED when they were sick. I had to wonder how many of those people were taking an antibiotic when it got better? I recently took an antibiotic for 2 weeks - my WED was better AND I lost 7 pounds. I NEVER lose weight unless I starve. I thought back to the last time I used an antibiotic - I also lost weight (can't remember about the WED). I had to wonder if, for some of us, things aren't complicated by gut issues. We've always assumed celiacs have WED because their iron is low. What if there is more to it?

Ah, well, must go to work....enough suppositions for one day :-).
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.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

I did not mean to imply that the holiday wasn't working! I haven't felt this great in years. A one day bump doesn't mean it doesn't work. Dr E. actually gave me a prescription for more methadone and Lyrica than I am actually using, he told me that as time goes on I probably will need to take more, that is just the way of medicine where one builds up a tolerance for them over time and more meds are required to get the same bang.

I wrote the above post to mention the idea that maybe methadone and other drugs like that might actually work better for RLS because they cause constipation. They cause the digestive track to slow down, does it have something to do with less symptoms?

I slept 7 hours last night! I had a wonderful day at work! I took an extra Lyrica 50mg and an extra 1/2 tab of methadone 2.5mg last night and the same tonight and it is doing the trick! It is working and the number one thing about what Dr E did for me was to get off that insanely lame drug pramipexole! I have had so many problems both mental and physical clear up since stopping it, it is really hard to believe!

Another thing to keep in mind is that my WED has been getting progressively worse for probably my entire life...it no doubt is continuing along that path...
Last edited by EeFall on Sat Oct 19, 2013 1:20 pm, edited 1 time in total.

cornelia

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by cornelia »

Eefall, I feel so relieved and glad for you. Long may it last. It was actually silly of me to write my thoughts down after only 1 bad night. I should have waited. Part of it is probably that I have issues with impulse control; when something comes into my head I have to react straightaway. I understand is a 'side effect' of RLS.

I wouldn't know if RLS is better off when constipated, but who knows? Long term constipation is probably not healthy for the body.

Ann, I think I can go along with your thoughts almost all the way; you should share them with experts who should think about it.
FYI: I have less RLS when sick, but have not used any antibiotics.

I have often wondered how, on the days that you don't take methadone, you can handle a DA. I have tried doing this with Ropinirole and I needed 1 mg. Besides feeling awful the next day I knew that my body had difficulty accepting the 1 mg after a few days of no dopamine med. Usually you start with a low dosis and that is better for the body. You have mentioned that now you use the Neupro pad: isn't that even more difficult to handle? And also: they say it doenn't work the first day. How do you do that?

Corrie

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

ViewsAskew wrote:Remember the research that came out a few years ago that links IBS with WED? People who had IBS and WED benefitted from antibiotic therapy. Just recently, someone said they had less WED when they were sick. I had to wonder how many of those people were taking an antibiotic when it got better? I recently took an antibiotic for 2 weeks - my WED was better AND I lost 7 pounds. I NEVER lose weight unless I starve. I thought back to the last time I used an antibiotic - I also lost weight (can't remember about the WED). I had to wonder if, for some of us, things aren't complicated by gut issues. We've always assumed celiacs have WED because their iron is low. What if there is more to it?


I didn't know that about Irritable bowel syndrome, interesting. I love to take antibiotics because it makes me feel great for weeks afterwards, I never thought about it helping RLS - I wonder if it did. I also didn't know that people with Coeliac disease tend to have WED which is also interesting.

Maybe instead of lack of absorption of iron for the cause of WED it could be the over absorption of other things. :lol:

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

From my recent experience - recently I had a course of antibiotics and my WED symptoms didn't show any benefit.
I also on occasion have been sick (no antibiotic involved) and have been able to stay in bed without WED symptoms. As if being poorly kicked the WED into the corner for a time. It was a weird situation to be sick enough to be in bed and yet nearly glad to be sick in order to get to lie in bed with comfort. OK, perhaps that is a bit flippant but I'm sure you will all know just what I mean.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

I had a really good pity party last night (not) and I am back in the fight. A fellow discussion board member sent me a note last night that helped me out of the funk (thanks!). I am having big problems with my meds, they are working great to control my WED but they suck as far as making me a crazy person at times. I have decided to make a conscious continual effort to keep on guard and keep the Mr. Hyde at bay. I don't really have much of a choice anyway.

I have to take the meds I'm on now because they work and nothing else does so I have to make the best of it. Fortunately for the last dozen or so years I have been able to build a pretty good shield to protect me from the barbs coming my way so it is just a matter of being extra careful. My wife retired today, this was her last day of work! :D It adds responsibility on me to get my **** together and behave myself. She deserves a nice retirement and a husband who can pay the bills.

Good thing she did too as she went to the doctor yesterday and he said her leg is healing nicely from breaking it in two place s (one a straight break, one a bad radial twisting break) this summer but it would probably take at least 6 more months before the pain will go away and she has developed arthritis in her ankle. Much of her job was standing for long periods of time in a supermarket doing pricing and checking. The floors are concrete underneath and lousy for someone in her condition.

She is starting to sell things on eBay from going to estate sales. Last weekend we went to one and she purchased some knitting kits of some kind and made $40 profit yesterday on one kit! We used to do that once in awhile some years ago but now she can do it more since she will have the time and also she likes doing it. I like doing it too actually. It is fun finding and selling treasures. It is amazing but the best things I have found have been at garage sales in the free box usually out by the curb. The reasoning I suppose is that it is just a bunch of "old" junk but many times it has turned out to be expensive antiques :lol:

So I'm going to have to watch myself closely and to be extra diligent to be the person I should be regardless of the mind altering drugs I have to take that turn me to the dark side. Yikes. The moral of the story is when you think you have seen it all, take another look in the mirror and be sure who's eyes it is that you are seeing it from. :twisted:

debbluebird
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by debbluebird »

So glad you are feeling better. It's just the way it is with us. It's up and down. After feeling down, we come back fighting. We have to. It's better than the alternative. :D

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Whoop whoop... glad you are back.
Betty
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EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

So the saga continues...Today I went to see the GI specialist. I had to leave work early from severe abdominal pain. It lasted a couple of hours before I had had enough. Got home and it got better. By the time I got in to see doctor it was mostly gone. First time I have seen him. He asked a lot of questions and went through much of my history on computer. Reminded me of Dr E but of course he has a different specialty. The guy is very smart though like Dr E which is reassuring.

He had me lay on back and raise up as if I were beginning a sit up and hold that position. Then he had me relax while putting his hand on the suspected problem point, one of the scars from my prostate cancer surgery last year. It sort of popped. He said he could feel something happening and suspected it was my intestine going back through a hole in the lining of body cavity, in other words a hernia. He also suspects it isn't that simple but is having a CAT scan setup right away, maybe tomorrow, to find out what is going on.

He said I am definitely having surgery, but he wants to find out exactly what is happening before they go in. If the CAT scan doesn't work he didn't say what would be next but I imagine an MRI. He apologized for me having to wait 6 weeks to get in to see him but that they would now get it taken care of pretty quick. I hope so! I am getting sick of being in a constant state of being careful with everything I eat, taking all the laxatives, getting the stomach aches, and not knowing what exactly is going on.

Sometimes I think I must be in a dream, this can't be happening! Surgery Thursday to fix my hand, now another surgery to fix my stomach. WED and sleep apnea do not wait on the sidelines while these other things are happening. I still have to deal with the meds making me a crazy person at the most inopportune times. I wish I could just retire and stay home! But of course that isn't going to happen so I am stuck.

My wife made reservations at a hotel Saturday on the other side of the state to go visit relatives. Trouble is she made non-refundable reservations before we knew of my Thursday operation. This should be an interesting weekend. Driving 9 hours round trip was not exactly what I would have liked to be doing while in pain with a 3" slit cut around my elbow. Ouch! I may have to blow off the trip but for now I am going along with the plan, maybe it will be okay. Don't even know when next surgery will be though. It will take more time to heal for sure, I imagine I will be out of work for awhile but don't know for sure yet.

It would be so nice to actually get my hand back to working as normal, get my GI tract working normal, and just start living again to as close to normal as possible. WED and sleep apnea are under control better now than they have been for years. Wishful thinking but it is possible that everything will be fixed soon and I'll get to start living again. :D

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

EeFall wrote:.

It would be so nice to actually get my hand back to working as normal, get my GI tract working normal, and just start living again to as close to normal as possible. WED and sleep apnea are under control better now than they have been for years. Wishful thinking but it is possible that everything will be fixed soon and I'll get to start living again. :D


I know this is a feeling I've had over and over. I keep thinking that if only I could get this OK, or that, then I'd be able to have my life back...or at least a semblance of it. I wonder how many of us do? I hope you are one of 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.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

ViewsAskew wrote:
EeFall wrote:.

It would be so nice to actually get my hand back to working as normal, get my GI tract working normal, and just start living again to as close to normal as possible. WED and sleep apnea are under control better now than they have been for years. Wishful thinking but it is possible that everything will be fixed soon and I'll get to start living again. :D


I know this is a feeling I've had over and over. I keep thinking that if only I could get this OK, or that, then I'd be able to have my life back...or at least a semblance of it. I wonder how many of us do? I hope you are one of them.


I should have said back to my new normal LOL I have no hope anymore that it will actually be normal again, too much time, as you mention, have passed and too many crushed hopes to think it will ever be normal again. I will take the new normal, as close to normal I can get.

Geez, last night I woke up with RLS symptoms of restlessness even though I was exhausted. I got to bed after 45 minutes, but it raised its ugly head again despite my meds. My condition is always there...

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