RLS LIFE: Drugs, Side Effects & Everything Else

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Postby ViewsAskew » Tue Jun 23, 2009 12:50 am

I must be psychic! Before I went to bed (at 9 AM), I thought, gee, I wonder how Nadia's doing? She hasn't posted in awhile.

And, bada bing, bada boom, here you are!
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Postby Polar Bear » Tue Jun 23, 2009 3:04 am

Hi Nadia.
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

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sardsy75
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Postby sardsy75 » Fri Jul 10, 2009 7:39 am

First up ... Helloooo Betty :)

I'm so sorry I missed your reply post way back then!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On the RLS front: I still hate rain ... and I also hate rapidly changing weather.

On the lil thing takin a holiday in my brain front: I've had two MRI's this week which have literally floored me. If I am ever lucky enuff to have a child of my own, I'm gonna breeze thru labor! Bloody hell! I'm totally over this pesky thing and i just want it gone! Pick up MRI results next week.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Sardine75
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Re: RLS LIFE: Drugs, Side Effects & Everything Else

Postby Sardine75 » Sat Oct 22, 2016 3:45 pm

Found my old thread! Yay! :D
Oh it's good to be back and see some familiar faces! I know, i've been away for too long and a lot has happened.

2011 ... moved from Gladstone to Brisbane after finding out my partner had been cheating on me for 10 months
2012 ... went through a trauma that derailed the fresh start plans and ended up in hospital for 2 months, then homeless for 3 months, followed by sleeping on a friends couch until April 2014
2014 ... fell in love most unexpectedly! (I was 39 and had resigned myself to being single with no kids for the rest of my life)
2015 ... went through hell on earth with my RLS to prove a point to my Neuro (i'll expand on that below)
2016 ... we've just moved in together and are making plans for the future! My thyroid threw me a curveball and suddenly switched from hypo- to hyper- back in January.

RLS wise ... i've been with the same Sleep Specialist since 2004 and she's really great. I've also managed to find a GP who has had specialised training in Sleep Disorders, so that was a real score!

Current RLS Medication Cocktail
Morning: 30mg Codeine Phosphate
Evening: 75mg Amitriptyline (yes, i'm still bucking the trend there!)
Bedtime: 30mg Codeine Phosphate & 0.5mg Clonazepam


Up until recently, I was also on: Lyrica (25mg morn & 75mg evening ... it had been as high as 600mg a day but stacked on the weight), but came off it as the side effects were really bugging me; Clonazepam came down from 1mg to 0.5mg Clonazepam; and also reduced my morning & bedtime Codeine from 60mg to 30mg.

So far, the Gremlins have been behaving themselves.

My Neuro, who treats my migraines with botox injections every 12 weeks, decided in late 2014 that he knew a helluva lot more about RLS than me, my Sleep Specialist and my GP combined and ordered me to come off the Amitriptyline! (or Amit-yada as its easier to spell :wink: ) So the start of 2015 was abysmal. I had not been so far down the RLS Black Hole since 03/04 and I am grateful that I was under the care of a fantastic psychiatrist at the time! Sleep Spec, GP and Psychiatrist all hated this crusade my Neuro had embarked on (the Anti Amit-yada thing that i've been battling for over 10 years!) and all of them were very concerned about how I was going to cope. Even worse, my partner and I had only just decided to make a go of our relationship, so he was literally dumped in the deep end.
I voiced my objections over and over, but "he knew best!" So it was a case of "guess I have to show you that it really does work!" The wean started at 150mg and I forced myself down to 50mg. In the end, it was my psychiatrist who put a stop to it when I turned up to his office, suicidal. I could barely shuffle and had hit the mental brick wall. He was straight on the phone to my Neuro and said "This madness stops today! I'm deciding whether or not I should put her in hospital so she can recover!"
I managed to stay out of hospital, but only just!
After consulting with my GP and Sleep Specialist we took it back up to 100mg straight away, as it wasnt just my RLS that was critical, but my mental health as well and we kept it at that does. At the same time, we upped the Codeine from 30mg morn & night, to 60mg morn & night because I have such painful symptoms. No, my Neuro didnt think to come up with a contingency plan that included a pain killer.
At the beginning of this year, we decided to trial coming down to 75mg and so far, it's held.
My Neuro has been banned from consulting on my RLS, by my GP and Sleep Spec and is only allowed to consult and treat my migraines.

There is a reason why i'm reducing dosages of things, but I cant go into details right now.
Yes, i'm still a great weather predictor too!

As for my thyroid, i've been dragged along for quite the ride this year. It's been fun ... not! Going from hypo- to hyper- for no explainable reason, i've had my medication dosage changed 8 times and now it's gone hypo- again. In the 10 years i've been battling with it, this has been the hardest year by far! I've shed 5in from my waistline this year alone.

Fibro and ME/CFS are still in the mix and I now have PTSD as a result of the trauma in 2012. Never a dull moment!

Yes ... I tend to ramble! Those who've known me since the early years of the forum will vouch for that!

ViewsAskew
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Re: RLS LIFE: Drugs, Side Effects & Everything Else

Postby ViewsAskew » Sun Oct 23, 2016 7:29 pm

OMG - I've often wondered what happened to you! So glad to see you back - of course, not glad you're still dealing with RLS et.al. Off to meet some people for dinner, but will read it all in detail when I get back.
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.

badnights
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Re: RLS LIFE: Drugs, Side Effects & Everything Else

Postby badnights » Mon Oct 24, 2016 7:16 am

Hi sardy/sardine
I remember seeing your name way back when I first joined up here, but don;t recall anything about you, so: pleased to meet you! I'm very sorry you've gone through such rough times, especially the neuro-induced ones :( :( How you can still sound so up beat is remarkable :)

Do continue when you can with the reason you're reducing dosages!
Beth - Wishing you all restful sleep tonight
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