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

For everything and anything else not covered in the other RLS sections.
rthom
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Joined: Sat Dec 31, 2011 3:03 am

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

Post by rthom »

glad you got some sleep last night and that your stomach feels better. I had bad attitude problems on the med too and had to stay away from everyone--literally in order to take it. In the end, for me, the sleep it provided just wasn't worth the cost. You'd have to know me but I've always been known to be a kind man--overly so usually and for me to be so volatile just wasn't ok, or livable for me and my life. What hard choices we have to make eh, it's just so wrong that people we need to deal with don't seem to be able to make it personal enough to themselves that they can understand the circumstances we really have to deal with from day to day. This isn't a comment meant to bash anybody --rather that of something I keep hearing over and over here. Those folks that think they know make off-hand comments and just are so far off it's like they heard nothing that had been told to them, or make light of it (it's at least in part I'm sure because they have to keep and emotional distance to keep from burning out themselves) but how to truly connect with them so that they can truly understand in a way that we need them to is a tough question. I'm talking about family, friends, Dr's..... A hard question eh, how to help them help ourselves...hmmmm...???

jul2873
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by jul2873 »

Hi EeFall,

I'm so sorry that sleep is still such a problem. Have you ever tried L-theanine? I think it's the ingredient in green tea. All I know is that it really does help me sleep. D-robose seems to help as well. Both of these are just supplements and--for me anyway, don't cause any side effects. Might be worth a try. Kratom is still my mainstay--still working and no side-effects or a build-up of tolerance. I'm enjoying this peaceful interlude because I'm sure that sooner or later the disease will get worse, or Kraton will stop working, or something.

Best to you

Mary

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

Post by EeFall »

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Last edited by EeFall on Fri Sep 13, 2013 4:30 am, edited 1 time in total.

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

Post by Chipmunk »

What's going on?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

KDecker1612
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Joined: Sun Sep 01, 2013 2:26 pm

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

Post by KDecker1612 »

Hello everyone. I'm new here. Eefall, I read your saga with intense interest. I am 49 years old. I have had RLS/WED for over 20 years. At first it was occasional, but then it became severe, every night. My doctor referred me to a specialist, who put me on Mirapex, .125mg. It was a miracle! No side effects that I could tell, and peaceful sleep every night. That lasted for several years, then I gradually had to increase the dose. We also added gabapentin. I discovered I had to limit the amount of gabapentin because it makes my ankles and legs swell, and made me groggy. But it did seem to help. But like you, I eventually augmented. I was taking the maximum dose of 4mg of Mirapex, 900mg of gabapentin and klonopin, don't remember the dose - and it wasn't working. I ended up going on a drug holiday for 2 weeks. Quit everything cold turkey for the first week, then tried some gabapentin alone in the second week, but it didn't seem to help at all. I was just like you, on my feet nearly 24 hours a day. I cleaned, danced, played darts, and paced, paced, paced. I sat down for about 5 minutes every few hours, and slept about every third day for about 1 to 2 hours. It was hell. I was working a desk job at the time and couldn't afford to be off work. I had to stand at my desk and do squats just to get through the day. It was hard to concentrate. I was so exhausted!

At the end of the 2 weeks, my doctor put me on Requip. It never worked as well for me as Mirapex, but I stayed on it for a year. Then I switched back to Mirapex - and it was a miracle again. That was 6 years ago. For the last year, I have been on .5 mg of MIrapex, but it's getting worse. I'm beginning to augment again. I've had to increase to .75 mg a day and I'm having symptoms during the day. I'm getting it in my arms more now too. I wake up a lot and sometimes have to get up and pace for a while during the night. I don't have insurance now, so I can't afford to go to a specialist. I have a script for gabapentin, but I really don't want to go back on it.

I'm scared, plain and simple. I don't want to go off my meds again, but I know that before too long the Mirapex will stop working again. I'm glad I found this site so I can talk to people who truly understand how horrible this condition can be. Thank you for sharing your journey! And thanks to everyone else who posts and shares ideas and suggestions. I'm going to look into some of the supplements and things some of you have tried. I know that everyone is different and what works for one won't work for someone else. I was interested to hear that lying on your stomach helps you - I too have to lie on my stomach. If I try to lay on my back, my legs will go crazy within minutes. Sometimes I lie on my stomach and put something hard under my thighs, putting pressure on it. It seems to help a bit. My boyfriend has learned how to massage my thighs to get the muscles deep inside to roll. Sometimes it helps sometimes not, like a lot of things we try. Just interesting to know I'm not the only one.

Keep posting and keep hoping!

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

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

Post by EeFall »

KDecker1612 wrote:Hello everyone. I'm new here. Eefall, I read your saga with intense interest. I am 49 years old. I have had RLS/WED for over 20 years. At first it was occasional, but then it became severe, every night. My doctor referred me to a specialist, who put me on Mirapex, .125mg. It was a miracle! No side effects that I could tell, and peaceful sleep every night. That lasted for several years, then I gradually had to increase the dose. We also added gabapentin. I discovered I had to limit the amount of gabapentin because it makes my ankles and legs swell, and made me groggy. But it did seem to help. But like you, I eventually augmented. I was taking the maximum dose of 4mg of Mirapex, 900mg of gabapentin and klonopin, don't remember the dose - and it wasn't working. I ended up going on a drug holiday for 2 weeks. Quit everything cold turkey for the first week, then tried some gabapentin alone in the second week, but it didn't seem to help at all. I was just like you, on my feet nearly 24 hours a day. I cleaned, danced, played darts, and paced, paced, paced. I sat down for about 5 minutes every few hours, and slept about every third day for about 1 to 2 hours. It was hell. I was working a desk job at the time and couldn't afford to be off work. I had to stand at my desk and do squats just to get through the day. It was hard to concentrate. I was so exhausted!

At the end of the 2 weeks, my doctor put me on Requip. It never worked as well for me as Mirapex, but I stayed on it for a year. Then I switched back to Mirapex - and it was a miracle again. That was 6 years ago. For the last year, I have been on .5 mg of MIrapex, but it's getting worse. I'm beginning to augment again. I've had to increase to .75 mg a day and I'm having symptoms during the day. I'm getting it in my arms more now too. I wake up a lot and sometimes have to get up and pace for a while during the night. I don't have insurance now, so I can't afford to go to a specialist. I have a script for gabapentin, but I really don't want to go back on it.

I'm scared, plain and simple. I don't want to go off my meds again, but I know that before too long the Mirapex will stop working again. I'm glad I found this site so I can talk to people who truly understand how horrible this condition can be. Thank you for sharing your journey! And thanks to everyone else who posts and shares ideas and suggestions. I'm going to look into some of the supplements and things some of you have tried. I know that everyone is different and what works for one won't work for someone else. I was interested to hear that lying on your stomach helps you - I too have to lie on my stomach. If I try to lay on my back, my legs will go crazy within minutes. Sometimes I lie on my stomach and put something hard under my thighs, putting pressure on it. It seems to help a bit. My boyfriend has learned how to massage my thighs to get the muscles deep inside to roll. Sometimes it helps sometimes not, like a lot of things we try. Just interesting to know I'm not the only one.

Keep posting and keep hoping!


KDecker1612,

Thanks for the post. To tell you the truth I had thought of just not coming back to this site at all because I have been feeling so bad the last few days. I thought maybe if I just tried to stay away it would make it better somehow. Pretty strange reasoning :lol: but then I am a pretty strange guy living a pretty strange life with this bizarre disease. I am glad you got something out of my posts, that is the main reason I do post in the hope that others will know that they are not alone in this, especially the ones who are almost in new territory their symptoms have become so brutal.

The doctor has just put me on 50 mg of Lyrica (yeah, the same stuff that gave me most of the terrible withdrawals getting off the 300 mg a day I was taking). His reasoning is that because the gabapentin is giving me severe side effects including making me mean-as-hell and giving me stomach cramps that starting me on the smallest dose of Lyrica may do the same thing as gabapentin (make me sleepy) but without the terrible side effects. I took 6 times the dose and it didn't do either of those things to me before so hopefully it will work. This is my first night taking it along with my 10 mg of methadone at night. I also still take 2.5 mg of methadone in morning and afternoon.

The other day my wife calls me up at work after her doctor appointment checking out her leg once again. She broke it 4 months ago a couple of inches up from the ankle. It has still been hurting her so they did a CT scan. She says, Why haven't you answered my texts!". I hadn't noticed that I had gotten any so told her I would read them. My God! She had written me 6 texts telling me that they have to re-break her leg and put in metal plates and bolts. She will be out of work for at least 4 months. I will have to stay home and take care of her for at least part of that time.

We are living by a thread financially now. I have missed months of work that the insurance company denied my benefits, no leave of absence pay, my wife has already been out of work a couple of months because of her broken leg and now another 4 months and while she was supplemented a little cause she had sick leave this time she has none. For the first time in years with had a NSF in our checking, thank god that our bank paid the mortgage payment (which would have bounced). That is how close we are living now financially, week by week. We have spent all of our savings in the last couple of years just making up for all the months, actually over a year of wages that we never got, then there are all the medical bills and the $2500 we spent to go to John Hopkins. I purchased our manufactured home in a retirement community last year about this time because I knew that my health was becoming very unstable. That is turning out to have been a very good decision.

So I am mentioning this because it is yet another part of Restless leg Syndrome/Willis-Ekbom Disease and also the complications of having Sleep Apnea too. It is a complication too of becoming older with this disease. If I were still healthy my wife's broken leg would have been like many folks, almost a normal inconvenience that happens in life, but I can barely take care of myself. This is selfish I know, but the added stress of this will disrupt my life which will have an impact on my WED, it just will. I know this from living through similar circumstances. WED doesn't just effect me physically. It effects me physically, psychologically, emotionally, and now it is even effecting our standard of living.

I held out little hope for this last ditch effort to find a solution for my severe WED. Then it seemed to work and I started making all these grandiose plans of how I would start living life as if I were normal again. I was elated. Then the bumps began, even the first week back to work I had to miss a couple of days of work because of lack of sleep. I found that the methadone at 2.5 mg in morning, 2.5 mg at lunch, and 10 mg in the evening stops my RLS symptoms completely. Then I realized that because of the hyper-arousal of methadone that it didn't mean I was going to sleep too. I needed something that would make me sleepy too. Gabapentin worked, I was again elated, at least it worked to put me to sleep, but the side effects changed my personality to become angry all the time and it gave me stomach cramps. So now it is Lyrica again. Who knows how that will go. I swore (swore!) that I would NEVER take Lyrica again. The withdrawals were a nightmare (and it will never totally leave me) and now I am back on 2 of the 3 drugs I got off of?

The only silver lining (so far) is that I am off the DA Mirapex (pramipexole). I'm not going to swear anymore. I still have a box full of pramipexole, no way am I getting rid of it. It may be my last hurrah. If everything stops working, and it could, it just might be the last medicine I take which would be somehow ironic but it would fit this bizarre existence.

I started off as a little boy who had to have one foot out of the covers at night and wiggly my toes...I think that was the first symptoms, if so I was born with this and have always had it, but with age it gets worse. I keep thinking (maybe the human mind is an optimist) that it can't get any worse - wrong, wrong, and wrong. The one thing we don't know though is if there will be a cure tomorrow, there is always the possibility of a total cure. I daydream sometimes when I think of just ending it (yeah I have morbid thoughts) that I do end it and the next day's newspaper headlines will say Cure for RLS Found! and then my obituary will be on the back page.

As Simon & Garfunkel lyrics are written:

So I'll continue to continue to pretend
My life will never end,
And flowers never bend
With the rainfall.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

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

Post by rthom »

The other day my wife calls me up at work after her doctor appointment checking out her leg once again. She broke it 4 months ago a couple of inches up from the ankle. It has still been hurting her so they did a CT scan. She says, Why haven't you answered my texts!". I hadn't noticed that I had gotten any so told her I would read them. My God! She had written me 6 texts telling me that they have to re-break her leg and put in metal plates and bolts. She will be out of work for at least 4 months. I will have to stay home and take care of her for at least part of that time.



Sorry to hear this eefal

rthom
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Joined: Sat Dec 31, 2011 3:03 am

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

Post by rthom »

Eefall

My wife had to get her lower leg done too, 2 plates and over 30 screws, anyway the thing I wanted to share with you is how important it is for her to not put any weight on it until the Surgeon says it's time. If it is done prematurely it (in the lower leg) can cause the bones to shift, drop and ultimately cause gangrene and then she would loose part of it. According to her specialist (and folks I saw in physio--that it happened to) it happens a lot. So if she wants to push the boundaries--tell her anywhere but here. Ok I hope it goes well. My wife behaved mostly (I had to make sure of it) and her outcome has been great. She has almost full flexion even--virtually unheard of. So there is hope for her too.

About your situation, I'm sorry it's not working out very well. Good for you to keep a positive attitude. I know how tough it can be to not be inclined to give in to the negative crap. Keep searching, hopefully something will happen soon for you. :roll:

EeFall
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Location: Washington State, USA

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

Post by EeFall »

rthom wrote:Eefall

My wife had to get her lower leg done too, 2 plates and over 30 screws, anyway the thing I wanted to share with you is how important it is for her to not put any weight on it until the Surgeon says it's time. If it is done prematurely it (in the lower leg) can cause the bones to shift, drop and ultimately cause gangrene and then she would loose part of it. According to her specialist (and folks I saw in physio--that it happened to) it happens a lot. So if she wants to push the boundaries--tell her anywhere but here. Ok I hope it goes well. My wife behaved mostly (I had to make sure of it) and her outcome has been great. She has almost full flexion even--virtually unheard of. So there is hope for her too.

About your situation, I'm sorry it's not working out very well. Good for you to keep a positive attitude. I know how tough it can be to not be inclined to give in to the negative crap. Keep searching, hopefully something will happen soon for you. :roll:


Thanks rthom. I will relay the message to my wife. I will watch her like a hawk. Tonight, obviously, the Lyrica is not working. I tried to go to bed at 10:30 pm but could not sleep at all. Now it is approaching 1:30 am and I will attempt to go to bed again but I don't know if it will work. I don't know how long it takes Lyrica to work but I took 50 mg today and I don't think it is working at all, may even be making the hyper alertness worse. I have one vacation day left so I could take it today if I have to, darn, I will never be able to use vacation again to actually take a vacation...off to bed.

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

Post by rthom »

Yah, it's 4:30am here and I am in the same boat as you --sleep wise-- made the mistake of dozing off for a couple of minutes earlier in the evening--no luck now. Anyway I hope you get some before you have to get up for work. I know you haven't much time till then--but here's hoping.

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

Post by Polar Bear »

Eefall - I read your post and I am very moved. Sometimes life is so unfair, and sometimes it is worse than unfair.
I have no words at present but know that I am thinking of yourself and your wife.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

I honestly do not think most people have a clue how hard this can be. It's just RLS (WED) they say. What were we thinking to be upset by "just" RLS/WED? Silly us.....I mean, who cares that we can't work, take care of our spouses, pay our bills...
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.

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

Post by debbluebird »

This is like a nightmare for you. So sorry to hear about your wife. I just keep thinking, how can it keep getting worse. I also know that even though I'm sleeping right now, it could change at any moment. Our lives are like no one else's life. All we have are each other and those we live with. How I pray for answers.

EeFall
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Location: Washington State, USA

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

Post by EeFall »

Reprieve :!: :D My wife went to get a second opinion with a surgeon that actually worked on her best friend last year, will not him but his colleague. His partner does the lower leg and foot and her friend had broken her upper leg. That sounds confusing :roll: but what I am trying to say is she went to a specialist who is one of the best around here and he said several eye openers.

He said if he had seen her when it had happened he would have operated. She has 2 breaks, not one. How can you miss a break :?: :crazy: He is going to have her wear a boot for 6 weeks and said that one of the breaks is healing nicely and that the other one is one of those spiral breaks that is pretty tricky but he wants to wait until after the first of the year to do anything, if anything is required. He thinks that she may not need surgery at all but that it has been 4 months and they usually wait 6 months to do anything because some people heal more slowly.

So anyways the other guy who is a podiatrist and not a surgeon is out of his element and this doctor thinks the surgery would have been unnecessary at this time, if ever :!: So in 6 more weeks he will see her and maybe not make a hasty decision even then, not until after the holidays. He thinks chances are it will heal by itself :!: I wish I would get a second opinion like that but all the ones I have gotten over the years have just said go ahead and have it done :lol:

This will also help us tremendously financially and allow us both to work for the next 4 or 5 months and get back on our feet (so to speak :lol: ). Probably all you guys et al praying for my wife and I no doubt. Yesterday we were both about shattered. My wife over the weekend, along with a little help from me, made enough food to fill up the freezer for a few months :lol: because we thought by next week she would be laying down for the next 4 months. Good news :!: :!: :!: :wink:

But of course life couldn't treat me all that well, somehow it just isn't part of the plan since about 2000 :lol: Tomorrow I go to a dentist appointment, they squeezed me in because I have a toothache, one of those that don't hurt until you bite down with that one tooth and it about launches you out of your seat. I think it will need a root canal. I have had many over the years mostly because of one accident I had when I was about 8 years old. When one throws rocks they are not supposed to bounce off another rock and come back and smack one in the mouth, but alas that did happen and I had my permanent front teeth for only a few months when they were broken off :lol: many of the nearby teeth have gone ballistic over the years from the shock of the rock :lol:

So then after that appointment I go to a doctor who is going to shoot cortisone into my shoulder between the collar bone and the bone I move my are with :lol: My shoulder has become increasingly sore over the last couple of months so I went to see if something is wrong with it the other day. The doc is calling it arthritis but what it is is that there is suppose to be a gap of maybe a 1/4 of an inch between this two bones, I guess there is padding in-between them (I don't know much about it), but the x-rays that he showed me show that it is just 2 bones rubbing together now, there is no padding left. He wants to try the cortisone, he said it might work for 6 months. It will tell him also if it is just that or if something else is going on that they can't see with x-rays. He said he had same problem and had to have one of the bones trimmed down (ouch), so that could eventually happen.

I took twice the amount of Lyrica tonight and I am getting tired. It is almost 11 pm. Hopefully I will be able to sleep. I have to get up at 3:25 am to get to work a couple of hours early so I can at least have some time at work before I spend the rest of the day in the human repair shops :shock:

ps
It is now 11:24 pm, I fell asleep re-reading this :lol: Maybe I should read my own writing more often since it seems to put me to sleep :wink: good night

jul2873
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by jul2873 »

I am so glad that things are at least looking up for your wife.

I do encourage you to try the L-theanine. Last night I went to bed as usual at 11, and was still awake and feeling hyper at midnight. Lately, since I started the kratom, this has been very unusual, but then I remembered that I also started the L-theanine about the same time and had forgotten to take it last night. So I got up and took two 100 mg. pills and was asleep in half an hour. And it's just a supplement--I don't think it can hurt you or react with your other drugs. The L-theanine seems to work on the hyper feeling, and the kratom on the restless symptoms.

Anyway, I do hope your life gets better. This has been so awful for you.

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