I feel horrible for my husband...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 17, 2013 10:04 pm

I just typed the longest response and it went bye bye.
I will skip most again but please ask me any questions you may have.
I was started on suboxone yesterday and have been totally symptom free. I am beyond happy. No side effects so far.
I even want to go out in the rain to do yard work since it is one of my passions and I had to drudge through it all summer. Normally to I would be out 10 hours getting dirty and listening to my audible books, bliss for me.

I know how bad this disease is and I am so glad you all were here for me, I would have gone insane with you. I know things may not always work this great but then to opiates I go. If I can avoid drugs like Mirapex forever I will.

Rthom are you any better? Have you gotten any sleep. I did down load an app on my phone called Qi Gong Meditation and Relation that helped a bit. I have an android and it was free in the play store.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 17, 2013 10:14 pm

Polar Bear thanks for mayo clinic thing, will take to appointment to see new doctor tomorrow. I have a few other things she can read at her leisure that I highlighted the parts I felt pertained to me or my goals. Incase the suboxone stops working I have to stay up to date. Plus I have kids and if they get it I need to help them.
Thanks Ann, I also have the last 2 meds written down in my notes to discuss with new doctor to try if need ever arises.

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

Re: I feel horrible for my husband...

Postby rthom » Tue Sep 17, 2013 10:38 pm

[quote="aveerik
Rthom are you any better? Have you gotten any sleep. I did down load an app on my phone called Qi Gong Meditation and Relation that helped a bit. I have an android and it was free in the play store.[/quote]

I find it odd to know how to answer your question, technically I have gotten more sleep (somewhere between 1 minute and 17min this am my guess was closer to the 17.) But really is it any better? Technically yes, but not near good enough. However compared to the option I'll take it and be grateful for both the little sleep and the lack of drugged haze I could be in "chasing" the illusive sleep. I so hate the drugs brain scramble thing....You? Thanks for asking it means more than you could know. Lately I've been pretty discouraged by the loneliness, even here.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 17, 2013 11:08 pm

I know a little of your suffering and as a pretty empathetic person I wish I could fix it all for you and everyone else suffering. Please feel free to private message me, if that is even an option here, anytime to discuss anything, WED related or not. Having WED is a very lonely place. Hang in there.

ViewsAskew
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Location: Chicago

Re: I feel horrible for my husband...

Postby ViewsAskew » Tue Sep 17, 2013 11:10 pm

We need to document all the people who've successfully used suboxone. I do seem to recall that doety went through some hellish withdrawals from it, though...but I could be misremembering.

I really am starting to think there is no drug we should take regularly - maybe they all need to be rotated. And,if we did that, we'd have many fewer issues.
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.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 17, 2013 11:21 pm

I read every post here on the subject of suboxone and methadone. Those 2 seemed to be best option for me to try. I am hopeful but realistic that I may need to change in future. I am definitely not telling everyone this is a miracle drug. My big post that went away shared some of many loop holes you have to go through to get it as it is more strictly controlled then methadone. As far as withdrawal I am hoping to get help before any is needed. There was a member named rlsgirl that had a lot to say on this subject.
Ann your experience is far greater then mine and your advice of rotating makes sense. I think I am so hopeful because my sister has used Xanax for 20 years and it has kept her symptom free. We are very similar in all ways physical but these are different meds so who knows. I just don't want to be taking anymore of the DA's I tried, their side effects have made me miserable and I have lost over 10 pounds which I can't afford to lose.

ViewsAskew
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Re: I feel horrible for my husband...

Postby ViewsAskew » Wed Sep 18, 2013 3:34 am

I think rlsgirl and doety are the main two who've used it. That's a very small sample. The reason I'm curious about it working is because one of the doctors told me he wouldn't prescribe it because it wouldn't work - he said it didn't work the same - yet at least some people have had success. I also am a bit leery of it because I think doety went through a horrendous withdrawal from it. I'm not likely to want to do that again - been there done that with clonazepam - I lost fifty pounds! I could afford to, but I was sick for 7 months and was not able to work or have a life during that time! I don't like drugs that do that to us. That's why I'm thinking rotation may become essential - every drug we use can (does not mean it will, but just that it does for some) cause a lot of difficulty when stopping it if you've stayed on it over a month or so, or can cause other issues when you use it regularly.

When I say withdrawal, I don't mean from addiction, for what it's worth. It's that these drugs cause physical dependence. It's not emotional dependence - but our bodies get used to them and when we take it away, we get very sick. The only way to avoid that is rotation. The crazy part is that a certain percentage of people do not have these difficulties with any given drug, while others do. And, crazier, is that you can react differently - so I had no problems stopping methadone (multiple times), yet was sick from both tramadol and clonazepam. The tramadol was easy to get through - a week of taper. The clonazapam was like watching a movie of a junkie who can't get a fix. Just horrid.
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.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Wed Sep 18, 2013 4:54 pm

I agree Ann, but I think do I live with taking Mirapex with some pretty bad side affects, no real relief in symptoms or try something that relieves all my symptoms with no opiate nausea. I read a lot about suboxone on Dr. B's web site too and he seemed to think it was a reasonable option up there with methadone. If for some reason I have to go off they have an in patient, put you to sleep detox method.
The withdrawal you had from clonazepam sounds horrible and that kind of weight loss would kill me, I am a thin person with a super high metabolism. I got chicken pox in college and lost 15 pounds in 5 days, not pretty.
I think the idea of rotation sounds great. Is there any doctors doing it?
Can I ask why you have stopped methadone several times? Did it stop working?

ViewsAskew
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Re: I feel horrible for my husband...

Postby ViewsAskew » Thu Sep 19, 2013 2:25 am

aveerik wrote:I agree Ann, but I think do I live with taking Mirapex with some pretty bad side affects, no real relief in symptoms or try something that relieves all my symptoms with no opiate nausea. I read a lot about suboxone on Dr. B's web site too and he seemed to think it was a reasonable option up there with methadone. If for some reason I have to go off they have an in patient, put you to sleep detox method.
The withdrawal you had from clonazepam sounds horrible and that kind of weight loss would kill me, I am a thin person with a super high metabolism. I got chicken pox in college and lost 15 pounds in 5 days, not pretty.
I think the idea of rotation sounds great. Is there any doctors doing it?
Can I ask why you have stopped methadone several times? Did it stop working?


SOme doctors are doing it. In my last email exchange with Dr B, he suggested he thought it was getting more and more popular.

I augmented quickly on pramipexole (along with many side effects that are truly difficult for me to live with, including severe depression). I didn't know what it was. I went through a horrible period with 24/7 symptoms, lost my job, and so on. I figured it out when I joined this board and then went to a convention sponsored by the WED Foundation (in the fall of 2004). It took a long time to get off of pramipexole. Eventually, I did get off and I used methadone daily. But, for me, the side effects are problematic. First, I have tolerance, so I have to increase my dose regularly (about every 8-10 months. Second, as it builds up, I am more tired and lethargic. Eventually, I wanted a different solution. I was glad my symptoms were controlled, but I wanted a bit more of my life back. We tried about 5 or 6 other opioids. It's at that time I actually asked Dr B about suboxone and he told me it wouldn't help me. Go figure. This was long ago, so maybe his thinking changed over time. So, after multiple failures, I actually suggested the rotation. I knew that some doctors liked to use what they call "drug holidays" to reduce risk of dependence, tolerance, or even augmentation, so I figured I'd make it frequent and see what happened.

That was several years ago. I've been doing some form of that since. While I still HATE the pramipexole side effects and my life in NO way resembles what it used to, I'm close to 80-85% of what I used to be - and that's saying a lot. I can't work 9-5, but I can do contract work and make 8 or 9 AM meetings when I need to, now. I couldn't do that before. I've stopped the methadone other times and tried other drugs, too, but unfortunately, only two drugs seem to work well for me - and neither is a drug I really want to take!
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.

cornelia

Re: I feel horrible for my husband...

Postby cornelia » Thu Sep 19, 2013 11:26 am

I support the idea of rotating the meds. Still, I believe that a complete drug holiday off all meds could be better from time to time in our drugged lives but these are so difficult to undergo that patients shudder to even think of it. It was thought that these drug holidays should last 2 months.

I wonder if something is going on in this field. A year ago drs Early and Allen wrote about 10-day holidays of all meds in NW's Magazine; which is a remarkably shorter period. I know that an RLS specialist (can't remember who) will speak about this topic in an RLS conference in Munich this year.
So, still very difficult to do, but if I speak for myself I would think about it (I failed a 2 months holiday last year).

Corrie

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Mon Sep 23, 2013 12:43 am

I think rotating would be a much easier option then a drug holiday. I can't imagine anyone wanting go into full WED symptoms for any amount of time. I have been symptom free for awhile now but I still am traumatized by my last experience and I am constantly worried about people out there suffering from this disease. My mom committed suicide when I was 4 so my biggest fear is leaving my kids motherless, but I know I couldn't have continued to live like that. It is frustrating that so many doctors don't take this seriously. I pray that my kids don't get it. My sister, dad, brothers, and niece all have it but not one of them has had severe episodes like I have. And how fortunate am I that although I have it all the time normally it doesn't keep me up for days on end unless I am having a severe episode.

cornelia

Re: I feel horrible for my husband...

Postby cornelia » Mon Sep 23, 2013 11:28 am

It is very distressing to read that your mum committed suicide, I feel sorry for you and her and her family. Do you mean she committed suicide because of RLS? If so many of us certainly can imagine she couldn't stand it anymore. She probably didn't have meds for RLS at the time. But even with meds there are people that want to end it all.
I fully agree that doctors should know about this and do their utmost to help these patients who are at the end of their ropes.

Corrie

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 24, 2013 2:55 am

I am sorry I should have not implied my mom committed suicide due to rls/wed. She had a baby die at 6 months age from complications of anesthesia after heart surgery. They didn't handle that well back in the 60's. Her dad also committed suicide so probable family history of depression too? I just wanted to point out how having grown up with out a mother I would never ever consider doing that to my kids, that said it would be so hard for me to live with constant very active rls/wed symptoms and that doctors need to figure this out. Lack of sleep is horrible for mental health.
It made me and my sister better moms I think so it ended up okay. My dad did his best I suppose and I had an okay step mom later, at least she gave me 3 great little brothers:)

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

Re: I feel horrible for my husband...

Postby rthom » Tue Sep 24, 2013 4:42 am

You have a great outlook on things, I think it's very important to keep an eye on whatever we can find positive as it is very easy to become complacent in our misery sometimes. This is understandable but complicates our lives I'm sure. I have appreciated your recent comments immensely.

cornelia

Re: I feel horrible for my husband...

Postby cornelia » Tue Sep 24, 2013 12:17 pm

Thanks for explaining, so sad. I think your kids will be very proud of their mum. Hope to hear more of you on this board.

Corrie


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