I dont even know where to start

bradyferguson · Post by **bradyferguson** » Wed Sep 10, 2008 1:29 pm

As the subject lines states i really do not know where to start. I have been a member of this group for some time now. I have not been on in some time now but once again my RLS has brought me back. Im not really looing for anything in particular i know all the treatment options that are available to me. I know what works for me and what does not.

I and my family have been through hell with this disease. initally i was going to say i have been to hell and back ....however im still in hell. I wish that i had words of encouragement for all but i dont, i am discouraged. i have nearly lost everything to this disease... my family my friends my finances and nearly my home. A few years back I stated taking mirapex and it was the best thing that happened to me in years with this disease.

5 years later i have gambeled away nearly 30 000, I painted my car 5 times in one summer, i just declared bankruptcy because of my compulsive spending, i became unfaithfull in my relationship as sex became another compulsion of mine. And lost my job in the Canadian military. All due to (i believe from the medication that was working so well for me). I dont know if any of you are aware of the class action lawsuits for mirapex but I am a part of one in Canada(WITH NO END IN SIGHT BTW).

I would also like to mention that i never gambeled prior to taking this medication nor had i ever painted a car nor did was i ever unfaithfull in my relationship and i was very money wise.

Aside from all of that there is nothing else available to me that relieves my RLS so i continue to take the very meds that are ruining my life.

My life is full of uncertainty with one thing remaining certin...I will never get sleep...and every night will be hell full of frustration and pain and loneliness.

This disease cheats my children my wife and everyone around me.
I am at the end of my rope and i do not know how to tie a knot so i can hang on. All the fight is out of me.

RLS YOU WIN!!!!

Sojourner · Post by **Sojourner** » Wed Sep 10, 2008 2:07 pm

b, I am sincerely saddened at having read your post. It must have been just as hard to write as is it to live with the words. I guess I have not read a post such as yours but if it is not atypical of the "gambling compulsion" side effect, and/or what it can develop into, than it will be good warning for those who even begin to experience this side effect to immediately consult their physician. Thankfully, it seems that many are able to take Mirapex without developing this compulsion.

While I did not read all of your previous posts, I did read several with the last I read being in 2005/2006 when things were apparently going "relatively" well for you. Unfortunately, so much has happened since then. While I do not wish to increase your torment, if you feel you would like or are able to tell us more about your trials, particularly what you may have done to try to combat or deal with the "compulsion" (how it first came about, Dr's you have visited, medications you have tried, things that you feel may have contributed to the compulsive behavior, etc) I would like to hear more of your story. Hope that does not sound too insensitive and, if so, I am apologizing in advance.

Please don't give up your fight. Though all your frustration, pain, and loneliness please know that "we" are here.

with sincerest wishes that each day will get better for you and your family

M.

bradyferguson · Post by **bradyferguson** » Wed Sep 10, 2008 2:59 pm

Does a lunatic know that he or she is a lunatic. That is the best way i can try and explain the compulsions. When did i become aware of the problem...it was actually my wife (conserned about my behaviour) looking on the internet who first made me aware that the meds may be causing me a problem.

there were 3 case studies that a law firm posted for possible clients for the class action lawsuit. They stated that if you fit any of the case studies you may want to consider being apart of the lawsuit. The first case study was a man who painted his house 4 times in one year, another was a gentelman who gambled away 100 000, the third was related to sex compulsion. Just imagine how i felt while reading this not even knowing that i had a problem.

It made things very clear to me that i had been changing drastically over the past few years. I spoke with my doctor about this however as i had already gone through the whole RLS algorithim (with the exception of the high potency opiods) so there were no meds that were available to me.

unfortunatly I was retired from the military due to my illness and in turn lost all of the doctors that i had been working with since 1992. I am yet to find a new doctor. Truthfully though i have just given up. My specialist was very well versed in RLS as he sits on the scientific advisory board for the RLS foundation(Dr montpliesier). Even he turned his back and said that there was nothing more he could do for me.

How do i fight the compulsions..... i generally wait for my wife to tell me that i have one! like i said does a lunatic know that he is a lunatic. Mind u some of the compulsions have been good in a way.... i now know how to paint a car... i also started building furnature(with no previous no how on woodworking) and ended up building every piece of furnature in my home.
Which was approx 10 pieces i built in 3 months.....i know its nuts.

Then comes the late nights when i dont sleep...(everynight) ... what to do with the time while everyone in my home is sleeping soundly..i no longer can deal with the pain RLS causes so i stay awake. The beauty of this disease is if i dont try and sleep I dont have a disease. So late nights away from my home led to infidelity.

I am a recovoring alcoholic so to a certin extent i may be more suseptable to compulsive behaviour.

It just seems that i have no impulse control what so ever.... ya im the guy who is sticking his fingers in the fan blades.

Frusterated and alone in my fight i turned to street drugs...inadvertently finding out that oxycotin works to the extent that i am RLS free.... however do i want my RLS specilist to be a drug dealer. I have not been able to find a doctor willing to presribe these drugs due to my past with addiction. So ya there is a cure out there for me......but how is it possible for me to use this drug.

So doctorless and Broken from the RLS i turn to drug dealers.

I know im all over the place with my answer but i hope this maybe clairifies thing for u

Neco · Post by **Neco** » Wed Sep 10, 2008 4:15 pm

Your only solution may be to find a methadone clinic that you can get into. Or start writing letters to every doctor you can find and explain the situation with the mirapex and ask them to consider that if not for this medicine you might have no gambling or drug problems at all.

I think it is repugnant for doctors to be aware of the addictive behavior risks with a medication like mirapex, as well as the drug companies who I believe have at least put a warning about the behavior in their commercials and literature..

As far as a lawsuit.. Do recall if your doctor ever warned you about the risk of compulsive sex, gambling, etc when they gave you the medication? You might be able to get into the class action, or maybe look into a malpractice suit..

Also have you discussed thuroughly that opiates do treat your RLS sufficiently, and that you don't think its fair for them to point out addiction when they prescribed you a medication that made you behave addictively in the first palce? That may be some place to start.. How do they have any way of telling that you would have a problem with opiates once you got the mirapex out of your system? Unfortunately you probably are at a general higher risk now because this has happened, but that still doesn't excuse people from giving the benefit of the doubt..

All in all, please at least look into possibly getting into a methadone / pain clinic for treatment of your RLS...

Post by **ViewsAskew** » Wed Sep 10, 2008 4:15 pm

Hi Brady,

I am so sorry that you have gone through this. It sounds truly horrible. I hope that being here offers some solace in some way.

We do have two other recovering addicts on the board now that both take methadone. Doctor prescribed, too. So, there are some doctors willing to go that road with their patients. It's finding them that is so hard.

I'm not glad you are back because of the circumstances, but welcome home.

Sojourner · Post by **Sojourner** » Wed Sep 10, 2008 6:56 pm

b, thanks for sharing so much more with us. I know Zach has so much to offer with respect to needed medications and addiction issues. So, I think his comments are valuable. Continued best wishes my friend and keep sharing with us.

M.

becat · Post by **becat** » Wed Sep 10, 2008 9:21 pm

Brady

Hello my friend. I'm saddened, as well, to welcome you home this way. But I'm so glad you knew where to come. Family, that is the knot, and we're tying one for you.

Wow, I'm rather speechless about what has gone on in your life since we've last talked.

Here's what I knew then and know now. You have to sleep and it sounds like that never really happened for you.

I remember many times online chatting or the phone, that you had not slept at all in days or weeks.
Did that never get resolved?

I guess I thought it did when you left or took a really long break from us.

Brady I'm thinking that lawsuit will take forever and you need sleep before anything else.

I think I know your RLS and I know you.....you are a good man, and you've made some big mistakes here. However, with that comes knowledge, awareness, and now the chance to find a new you come out of this.
Yes, I know you can.

I know the Doc is a good one and things don't always go well for everyone, even with the same doc.....I know his practice has grown and he seldom take new patience on now (so I am told).......my point?

Maybe you and he had come to the end of the road together. It's easily to miss the signs when RLS and sleep deprivation swallow you up. I'm sorry your not with him, he is a good doctor for many that he sees.

Maybe the pain clinic is the way to go. They might better understand how to treat you without putting you in a non supportive place. I have no idea how pain clinics work or even how they would work in Canada.

You knew before, that your past would and did play into this treatment thing. It was a fight then and might be now, but you did fight. I'm laying it down bluntly, but you know with love........yes, your still my little bro.!

You will find someone to help. We will be here to support and protect your venting. And hope is alive and well, just a bit out of sight just now.

I'm here to tell you that that knot has been tied and your hanging on!

I'm just so sorry things turned out this way. Do Not Give Up. Hear me, you have many great reasons not to. Even if everything changed, it would still your life with wonderful daughters and a most awesome wife.

Keep talking to us Brady.

Hugs and a moon full of prayers for you and the family.
Lynne

Aiken · Post by **Aiken** » Wed Sep 10, 2008 10:40 pm

Zach--

I think methadone clinics only give out methadone in quantities that are meant for addicts, which are anywhere from 4-8x what someone who's opioid naive would need for RLS. That could kill a person, and they don't let you take just part and save the rest for later. (You have to take it with them watching.) One would need to be very careful about the dose they got.

Neco · Post by **Neco** » Thu Sep 11, 2008 2:55 am

This is true, but he says he's been obtaining Oxycodone from the street so I imagine he has a pretty stable tolerance overall.. And I think different clinics work different ways.

In my own reading I've come across many comments that suggest they start you out slowly and monitor you when you first come in, to make sure you weren't given too much, etc.. Also every persons dose is different and titrated up/down for where they feel comfortable. Some people are on pretty low doses, while others are way above 100mg.

Also I know at least one methadone clinic I read about in my area, asks what your reason for coming there is, and seems to indicate that they have a meeting with you before admitting you and ask you all these important things.. Obviously no clinic is just gonna hand methadone to anyone who walks in, so I don't think anyone would need to worry about being killed as long as they were honest. Also one of the application criteria was plain old opiod dependance "for a year or more" and all you'd have to do is provide medical records and have the doctor vouch for you, etc..

So I think there is a great possibility here if he looks hard enough and find the right clinic.. OF course being bankrupt is an entirely different issue...cause we all know those places are not cheap

cornelia · Post by **cornelia** » Thu Sep 11, 2008 12:45 pm

Brady, just want to say that I am overwhelmed by your distress and the story of the last few years. I have been knowing you from the start of this group and I had high hopes for you when you were so pleased with Mirapex, although I have always imagined that keeping your job would be a hell of a job in itself, because of your very severe RLS.

I am really shocked to read that dr M doesn't want to help you anymore. To know that a docter can do that makes me very scared. I think it is time to contact dr B and ask him if he will help you.

I can so imagine that you have struck rock bottom. Hope you find a straw to get out of the deep well. What a horrible desease this can be.

Corrie

Neco · Post by **Neco** » Fri Sep 12, 2008 2:08 pm

Yeah, if you can somehow get help from doctor B, that is a good place to start, especially if you are at all close to him and can get in to see him without much of a travel problem..

I'm not really sure what his prescribing practices are, but hopefully he might be understanding and at least consider giving you some methadone.

becat · Post by **becat** » Fri Sep 12, 2008 3:11 pm

HI Zach,

I was hoping to have heard from Brady by now....I'm thinking we all have, that have posted to him.

He is not from the States, so Dr. B. could be very helpful, but I'm not sure if Brady's medical community sees Methadone as an option. Honestly, I don't know.

Seems like they would, who knows.

Brady if your reading and not posting, well, let us know your ok!

You know we can talk through anything. You've not lost any face or heart with us. We just want to help where ever we can.

Lynne

dogeyed · Post by **dogeyed** » Fri Sep 12, 2008 4:09 pm

Hi Brady,
Wow, that's some story. I have a few tips that might help.

First, a neurologist can treat you for the RLS, just let him know the Mirapex ruined your life, tell him Oxycotin was too strong for you, and say nothing else. Then let him work on what medicine to give you and just go with it until you and the doc find a good drug that will help. But I do think opiates are the way to go, as long as you can sort of control your use.

Second, I take Zoloft, 100mg, and altho it's for my clinical depression from a car wreck, it also has stopped a minor obsessive part of my nature. Being obsessive is great for surgeons, but not for people who are retired, which I am, too. Anyhow, it will keep you from doing all the nutty stuff. A psychiatrist can prescribe that for you, perhaps short-term for a few months, until all that Mirapex stuff gets out of your system.

Third, you could probably stand a support group of some kind, you know, biweekly meetings or something, but if you don't want a group thing, the psychiatrist can get you into therapy with a psychologist for a few months who specializes in obsessive-compulsive behavior. That's if the Zoloft doesn't quite do the trick.

Fourth, if you and your wife have gotten over everything, fine. But if you're still a little rocky, marital counseling can help. You and your wife are likely real insecure about everything. The closer you two can get in opening up, the better off you'll be, to have a best friend again, someone you can hold onto and comfort, and vice-versa. And of course it's a lot handier for the sex impulse than running the streets.

Fifth, I hope your finances are getting under control. You can always declare bankruptcy or visit a financial advisor, and some banks have money counselor type people. But you can also do something with your obsessions, if you still get lost in those. Instead of painting cars, paint canvases... if they're good, you can sell them. The art world is a good thing to get all wrapped up in. And I noticed your post was rather vivid and well-written, so consider writing first a short story about your trip into madness with Mirapex, and if you like what you've done, you can sell it to a magazine.

I hope one or more of these tips might help. But I imagine you just venting here and hearing other voices who have had a lot of problems with RLS, more than the medical community fully realizes, is enough. I remember a very sad post in here from the wife of a fellow who had RLS, treatment didn't work for him, he just could not sleep, and so he went around the bend and became a zombie, and they had to put him in an institution. So, these things do actually happen, which of course translates that you're not alone. And at least you haven't been locked up in a nuthouse, so that's a good thing. It means you've got more control than you realize, your awareness is equal to wisdom, and I think you'll make it this time.
GG

ctravel12 · Post by **ctravel12** » Fri Sep 12, 2008 4:22 pm

becat wrote:Brady

You will find someone to help. We will be here to support and protect your venting. And hope is alive and well, just a bit out of sight just now.

I'm here to tell you that that knot has been tied and your hanging on!

I'm just so sorry things turned out this way. Do Not Give Up. Hear me, you have many great reasons not to. Even if everything changed, it would still your life with wonderful daughters and a most awesome wife.

Keep talking to us Brady.

Hugs and a moon full of prayers for you and the family.
Lynne

Hi Brady
I just read your post and am so sorry for what you are going through.

We are here for you at all times so please do not hesitate to contact us at anytime at all.

I highlighted what Lynne said and agree please,please keep talking to us.

Remember we are all family.

Post by **Polar Bear** » Fri Sep 12, 2008 8:58 pm

Brady, I am so sorry to read how you are suffering, this has to be one of the most disturbing situations I have read in the forum.

I know that Aiken, Zach and others are very well versed in medications etc. I have nothing to offer you but my thoughts and hopes that you find a doc to help.