Please Allow me to Introduce Myself...

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.
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Homestarmy
Posts: 7
Joined: Mon Nov 04, 2019 1:10 am
Location: Detroit, Michigan

Please Allow me to Introduce Myself...

Post by Homestarmy »

Hello,

I'm a 56 year old married male, and have suffered through RLS for the past 30 years or so. It is a hereditary condition for me; my father and at least one of my aunts that I know of had it, and my two sons by my first wife (29 and 27) are beginning to have episodes.

Here are the things I currently know about my condition.

I know that, for me:

The Bad
My symptoms generally start around 10pm or as soon as I went to bed, whichever came later, although if I'm really overtired (not just my normal overtired) they can start anytime of the day
They are confined to violent, uncontrolled, movement in both legs (although my right leg is worse), and sometimes my arms
They are magnified by cold, which is an issue living in Michigan. Wearing sweat pants to bed helps
My current meds are Mirapex - 1mg x2, Gabapentin 600mg x1
My current meds don't work very well
I tried covering with an additional 1mg of Mirapex. I might as well have taken a Tylenol for the relief I received.
I'm in augmentation.
I didn't even know that was a thing until about six months ago
That Mirapex has a list of side effects that, had I realized how lengthy and bad they were, I may not have decided to start using drug.
I've been continually exhausted since 1989
My symptoms are worse, the more tired I am
Walking around my home helps (I don't trust myself to go out when I'm symptomatic)
Until very recently, I kept the extent of my symptoms to myself. Which means:
I never went to bed with my wife
I actually avoided going to bed because I knew the inevitability of what was to come
Once in bed, I'd sneak out as quietly as I could so I wouldn't wake her once symptoms started
I would downplay what my nights were truly like
I finally admitted to myself that suicide as a concept was not out of the question
I realized I was over my head and in a lot of trouble

The Good
First and foremost, I have an incredibly amazing wife, but more on her in a bit.
Through this all, I have been able to hold a job
Through this all I have not hurt myself or anyone else because I fell asleep at the wheel on the way to work, although I did bump fenders with someone in July 2018 (I didn't sleep most of the month)
Hot baths, almost to the point of scalding, seemed to calm my nerves. Sometimes.
At this point in time I've actually found something that alleviates all of my symptoms, but more on that in a bit as well.

The turning point came over a series of days/weeks. I reached a point in September where I couldn't take it anymore, so I broke my self imposed silence, and told my wife what I was truly experiencing. Not a condensed, stoic, all will be well version, but the truth. How the sunset brought a bone deep dread, and how the empty house turned into my own private hell of sleep deprivation and my body fighting against what it craved so badly. I told her about how I would whine, beg, and bargain with anything that would listen. How I had somehow convinced myself that eating would give me relief. She then starting staying awake with me, as best she could. But her alarm goes off at 4:40am. But still, from that point on, now that I allowed her in, she's there whenever I need.

She's offered to rub my back, and over the years I've taken her up on her offer, but when I'm symptomatic, a backrub is agony. It's like every nerve is on fire. And it causes all of my nerves to fire harder, if that makes sense. But one night, I asked her to just squeeze my right leg just above the knee. At first it, like the backrub, caused my leg to jerk uncontrollably. But after some positioning, the jerking in my right leg slowed, then stopped and the jerking in my left leg started. So she went to work on my left leg and got that to calm down, only to have my arms start up, one after the other. For 45 minutes she applied pressure to whatever limb moved and eventually, the stopped moving. It was a miracle!

She kept this up every night for two weeks. Some nights took longer, none less, and it didn't always worked enough for me to know there was something good here. And to know that, if I needed it, she'd keep this up for the rest of our lives, but I couldn't ask that of her. I had to find something else that would give me relief and her a break.

My first choice was our automatic blood pressure machine. I have an extra large cuff which I managed to get around my calf just below the knee. The first time I tried it, I hit the button and let it inflate until it errored out three times, my leg jerking violently each time. I took the cuff off after the third time and my leg was quiet! And it stayed quiet for the rest of the night. I used this method nightly with mixed results but, again, progress was being made, I just needed something better than a blood pressure cuff.

I looked at the PCD'S available on Amazon, but they didn't seem right - I didn't want a full leg and foot unit, just something to apply pressure where it hurt the most. I mentioned the situation to my boss. I had kept her informed all along because I felt that she needed to know about this condition that was impacting the life of one of her employees so severely. You know, so if she came to my desk and found me asleep (which has happened on more than one occasion) she knew why. Anyway, she had undergone an outpatient knee replacement in August, and had been sent home with a PCD designed to just cover her calf. She loaned it to me and, with the exception of two self induced situations where I was messing with my Mirapex dosage, it completely controls my symptoms. I know it's only been two weeks, and I have that black cloud mindset that's telling me that it's going to stop working at some point, but for me, for now, this device is truly a lifechanging miracle. It's given me something I haven't had in a long time; hope.

I realize that I've rambled on for quite a bit now, and if you're still reading this; thank you. I don't know if my story is helpful to anyone, but I hope it is. I marvel a the depth of pain that I've encountered in the short time I've been visiting this board, just as I marvel at the care, compassion, and love that I find here as well. Thank you for allowing me to be a part of this community.

Icantsleep
Posts: 156
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Please Allow me to Introduce Myself...

Post by Icantsleep »

So the first thing I'll say is welcome

Next .... maybe thank you

I don't think I'll be able cover anywhere near what I'd be interested in discussing with you in one reply

Dont take that as me telling you your post is too long

I just have so many questions, and I've just taken my "bedtime" meds

We've got a few things in common


I'm glad you have finally chosen not to suffer in silence

Rustsmith
Moderator
Posts: 4705
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Please Allow me to Introduce Myself...

Post by Rustsmith »

Homestarmy, I am sorry that you are having to go through this, but it is something that virtually all of us can relate to. Many of us have been where you are today and have fought our way through it.

My first comment is that you need to talk to your doctor about getting off of the mirapex. The max recommended dose for treating RLS is 0.5mg, so you are far above that level. Since your doctor does not seem to be aware of this, your first step may be to request a referral to a doctor who is familiar with treating RLS and who also knows how to treat patients who are experiencing augmentation. Finding a doctor in your area that knows how to treat augmentation may be a problem since even may neurologists are not familiar with augmentation. Quite a few of us have to travel long distances to be treated by a doctor with this experience.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
Moderator
Posts: 16101
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Please Allow me to Introduce Myself...

Post by ViewsAskew »

I would offer a hug, but when I had severe augmentation, I didn't want ANYONE to touch me, even virtually, lol.

Glad you are here and SO glad the foot unit is working. Agree with Steve - getting off the pramipexole is the next and most important goal.

Let us know what you need from us. We will do what we can to help - including listening and commiserating!
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.

Polar Bear
Moderator
Posts: 7863
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Please Allow me to Introduce Myself...

Post by Polar Bear »

Absolutely, time to get off the Mirapex (a dopaminergic drug known often as a DA). When you add the occasional extra 1mg of Mirapex that takes you to 6 x times the max daily dosage.
May I tell you that I was taking over the prescribed dosage of Ropinerole (also a DA). Over the years I had many times been advised to get off the Ropinerole and that I would never regret it. I knew this advice was good but I was fearful of the journey through Withdrawal. Eventually I bit the bullet and almost a year ago started to slowly wean off it and perhaps I was fortuate but it was not as bad as I had feared. It's no picnic but I am so glad I did it and I've now arrived at the very last step to be Ropinerole free.

There is Section on Augmentation with great information.
If you can have your GP support your withdrawal, (I'm taking Codeine and Lyrica. Lyrica is similar to the Gabapetin that you are taking) then that would be brilliant. Your Gabapenti dosage is quite low. My Lyrica when equated to your Gabapentin is much higher. The two drugs work a little bit differently.
I hope your GP will support you, perhaps using guidance documentatio from the Augmentation Forum, or alternatively that you find an excellent doctor experienced in the treatment of augmentation.

file:///C:/Users/Home/AppData/Local/Temp/IRRLSSG%20Summary-of-recommendations-RLS-Augmentation-13Aug2015.pdf
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

Homestarmy
Posts: 7
Joined: Mon Nov 04, 2019 1:10 am
Location: Detroit, Michigan

Re: Please Allow me to Introduce Myself...

Post by Homestarmy »

Thank you all for your support and concern. Dropping the Mirapex is my number one priority. I have met with a neurologist once, and my next appointment is on the 25th. I want to come up with a plan for weaning myself off of the Mirapex. I know it will be a slow process, but I am hopeful especially after hearing multiple success stories. The PCD is still working for the most part, so that is a positive as well.

Icantsleep
Posts: 156
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Please Allow me to Introduce Myself...

Post by Icantsleep »

Stopping mirapex is a top priority

Having a plan to do this is important in terms of meds/time off work/time off everything if you can ...

Even small stuff like a couple different weighted blankets in a couple different bedrooms (or at least one)
Letting go of other stressors in you life for the moment so your mind and body can focus
... with that said , find yourself some simple things to focus on like crosswords, sudokus , puzzles .
Challenge your mind a bit . This is a helpful tool .
You will need to divert and distract yourself from a likely temporary increase in your symptoms

Having help from your wife and anyone else can really help
You've already made huge strides by choosing not to do this alone .

My guess is you will need an opiod to help you with the potential significant increase in symptoms.
Perhaps kratom
Perahaps some THC
And obviously your medical device !

Making a plan now in regards to what potential med you might want (or need) to take post mirapex is not a bad idea
It's not too soon , and you wouldn't be getting ahead of yourself

I wont get too much further ahead of ourselves for the moment

I've been trying to find the time to contribute a helpful post
... I'll be around for a while though, so no need to cover everything just yet
Some decisions will be made on the fly

There are also a few mods and regs that haven't been here in a week or so that will see your post and no doubt offer you some advice and compassion.

I hope we both have better than average nights tonight
... and in your case, i hope your success with the PCD continues

Brynmr
Posts: 70
Joined: Sat Jul 21, 2018 3:15 pm

Re: Please Allow me to Introduce Myself...

Post by Brynmr »

...I'm a man of wealth and taste. :D

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