IS THERE LIGHT AT THE END OF THE TUNNEL?

[jumpyowl]

Hello, Clara:

Will try to give you some ideas for your upcoming visit. First a little info on Zopiclone (which I am sure you have already seen):

[/Zopiclone, a cyclopyrrolone derivative, is a short-acting hypnotic agent. Zopiclone belongs to a novel chemical class which is structurally unrelated to existing hypnotics. However, the pharmacological profile of zopiclone is similar to that of the benzodiazepines.

In sleep laboratory studies in man, zopiclone reduced sleep latency, increased the duration of sleep and decreased the number of nocturnal awakenings. . The course of treatment should be no longer than 4 weeks in duration.

Adverse Side Effects
The most common adverse reaction seen with zopiclone is taste alteration
CNS:
somnolence, asthenia, dizziness, confusion, anterograde amnesia or memory impairment, feeling of drunkenness, euphoria, nightmares, agitation, anxiety or nervousness, hostility, depression, decreased libido, coordination abnormality, hypotonia, tremor, muscle spasms, paresthesia, speech disorder.

As you see this drug causes paresthesia instead of eliminating it So I am sure it exacerbates yours!!! Also hostility as you noticed.

The algorithm for RLS treatment for your fairly severe RLS suggests the treatment with one of the dopamine agonists (e.g. Mirapex). Your RLS appears to be beyond the stage where only hypnotics would help. Especially not with a hypnotic such as Zopiclone with its side effect of paresthesia!

Codein based pain killers should help but possibly Ultram would be more effective.

Ask your doctor to take you off Zopiclone mentioning the fact that paresthesia is one of your major morbidity right now and Zopiclone happens to have this side effect so it probably exacerbates yours. (Sonata may be better if you need help to sleep.)

Getting rid of paresthesia might help you to sleep w/o a sleeping aid. To do this Mirapex may just be right for you. Mention to your doctor that Mirapex helps up to 90% of patients with RLS!!!

So ask your doctor's opinion to change from Zopiclone to:

Mirapex (titrated up from 0.125 mg/day)
Ultram for pain
Klonopin or Lorazepam for sedation (to get rid of stress)

or something similar to this.

First you have to calm down, get rid of paresthesia, treat pain, and then I think sleep will follow.

Let me know what your doctor thinks (or you, for that matter).

[claradragon]

Many thanks to you jumpyowl and (((((hugs)))))
Your time is invaluable and you do so much for the people on this site, thankyou

[sardsy75]

As for stress, it is quite high as my relationship with my partner appears to be drawing to a close.

Hi again

I was sad when I read that your relationship looks like it has come to an end and know what a stressful time that is when it happens.

However, you need to shift your focus away from your sadness which in turn is causing you to stress out which in turn, again, is also contributing to your RLS and lack of sleep.

Try something new to do; something that you've never done before. For example, my hubby does kung fu; something that I long to learn, but simply don't have the energy to do, so, I went for the next best thing - Tai Chi. Nice and slow, non-contact, and extremely helpful for de-stressing! Another bonus is learning the breathing & meditation techniques - you'd be surprised at how fast you can reign in a major RLS attack simply by concentrating on your breathing (i.e. taking your mind off your legs!) and as I like to put it - think happy thoughts!

I'm very much an "earthy" type person who enjoys the serenity of a beautiful day outdoors (although those who meet for the first time definitely would not pick that!) and in the past few months have spent a lot of time in the botanical gardens over town. I take whatever novel i'm reading at the time, a bottle of water, whatever yummy fruit is in season and then "park" myself on my favourite bench in the gardens; which sits under a huge tree and overlooks a lagoon filled with birdlife. A couple of hours later, I usually feel recharged enough to face the world again and off I go.

If you have a favourite place you like to visit, the local park, the beach, the country or the gardens; take some time out for yourself over the next couple of weeks and sit back and enjoy mothernature at her best. It will do you the world of good!

Ok, now that you all really are wondering what makes me "tick" i'm going to wish you all a good nite and take me, myself & the novel i'm in the middle of, to bed. (What can I say, i'm a quirky kinda gal - most people either luv me .... or spend the rest of their days trying to figure me out )

Big (((((HUGS))))) to you Clara

Take care of you!

[claradragon]

Nadia many thanks for your words..they have brought comfort to my soul and to know that there are so many good peolple here ready to listen and advise or just to be there when you are struggling through the darkness this illness brings is a relief.

I have stopped taking the zopicone...it was making me way too hostile! But i'm back to no sleep until i get to see the doc on tuesday..maybe he'll give me something that will help but as we know what works for one may not work for another, trial and error.

As for relations with my partner...it's over much to my sadness but these things happen and at the end of the day my partner did not understand this illness and the frustrations and would respond with"It's mind over matter and get a grip"but i did get her to understand sleep deprevation to some extent!

I did manage four hours sleep last night which is great for me...the downside is i can hardly move my neck today! oh well just another ramp on the road of life!


Love (((((hugs))))) and good sleeping to you all

[claradragon]

By the way my bio is on pg 1/new to rls/new members and current members please help.

[sardsy75]

at the end of the day my partner did not understand this illness and the frustrations and would respond with"It's mind over matter and get a grip"but i did get her to understand sleep deprevation to some extent!

Don't you just wish sometimes that RLS was a "Visible" Condition?

The number of times i've wished I could have either my arms/legs or both, in plaster-cast is beyond belief.

Having Chronic Fatigue Syndrome as well makes it even harder sometimes ... people have no idea how frustrating the feeling of simply not having enough energy to hold your arms up to wash your own hair is

I used to cringe at the idea of needing a walking stick at my "ripe old age" of 28, now i'm just glad that it holds me up on my bad days and ignore the stares However, I am thankful that at least I can still get from "A" to "B", albeit it at my "own" pace

Remember: take it one step at a time, one day at a time, and Stay Positive!

Take care of you

[Sole]

... people have no idea how frustrating the feeling of simply not having enough energy to hold your arms up to wash your own hair is

I understand that frustration completely, Nadia. It can make a person (ME) feel like a real loser sometimes. All of those things that should be effortless are now either impossible or exhausting. I'm sorry.

[claradragon]

I too can understand this...there have been many occasions when just the thought is exhausting!And yes not being a "visible" illness does make it a whole lot more frustating and then the occasional good day comes along and completely throws everyone!

[jan3213]

Hi, this is Jan

Nadia wrote:

Don't you just wish sometimes that RLS was a "Visible" Condition?
The number of times i've wished I could have either my arms/legs or both, in plaster-cast is beyond belief

.

"Ain't that the truth?!" I get so tired of people looking at me like I've got three eyes, or seeing their eyes glaze over in boredom when I try to explain what I've got, or, as Clara said, having people say, "just get a grip", or "just go take a nap". Ha! That's a good one! As I've said before (sorry-but it bears repeating), I wouldn't wish this on my WORST enemy!! But, everyone has some kind of cross to bear, and this one happens to be ours. (I guess I must feel better today - Ha!) This week I've felt like I was 80 years old (I know it was stress), but at least I'm still kicking (sort of) and, Clara, it will get better, in one way or the other!!! If you have to, just SCREAM!! And, we've always got Jumpy to give us good advice. And, each other to scream to! We're here--remember. It's MY turn to listen, Clara. You know where I am!

Love ya

Jan

[claradragon]

Thanks jan
Just knowing there is someone out there who understands this craziness we call our lives is a blessing

[claradragon]

I managed to get the right date and time for my appointment and i have to admit i was quite apprehensive about it.It turns out all my fears were unfounded as he turned out to be quite knowledgable about rls

He's started me on neurontin 100mg
1 in morning 1 at night for 1 week
1 in morning 2 at night for 1 week
2 in morning 4 at night for 1 week

temazepam 30mg
1 an hour before bed

and to continue with otc painkillers 2x500mg paracetamol/12.8mg codeine phosphate when required(at least four hours apart)

He willingly took the information i had and was grateful for the website links.He also decided that the appointment (which i thought had been cancelled in favour of a sleep study but now is as well as) with the neurologist needed to be brought forward and promptly fired off a letter to the neurologist (my turn )!My bloodwork was ok apart from med/low B12 (funny...my mother has been treated for perniciuos anaemia since her early 30's, she's 74 now...hmmm) which he's not too concerned about (i have already been tested for perniciuos anaemia which came back negative) and has asked me to return in 3 weeks

All in all a very good day...

Huge big thanks to everbody for their time helping me through these first stages...you guys are just brilliant!

claradragon

p.s. pernicious anaemia...the inability of the lining of the stomach to absorb B12

[jumpyowl]

I am glad everything went fine. I like temazepam but if it does not do the job for you there are several others your doc can choose from.

Neurontin has to be watched (especially as you increase the dosage).
I am glad you are taking it twice a day (it is much better than once).
But it works for many people especially the ones with neuropathic pain.

I bet the doc was surpised how knowledgable you have become

Now please cross your fingers, I am seeing the pain doc tomorrow morning

I have spent some time preparing (condensed my diary down to six pages from 14). Still too long.

[Sole]

Clara,

It's wonderful that your appt. went so well. I've been taking Restoril for four nights and have had four nights of good sleep. I hope you have the same success. Perhaps you'll even get to go to bed early tonight, if you're not working!

Can't wait to hear from you tomorrow. Great news indeed!

[claradragon]

Jumpy i hope your appointment today goes well for you...can't wait to hear how it's gone!

I GOT SIX AND A HALF HOURS SLEEP LAST NIGHT AND I FEEL FABULOUS!
That is the longest i have slept in years!!!

Just wanted to tell you all

[Sole]

Jumpy i hope your appointment today goes well for you...can't wait to hear how it's gone!

I GOT SIX AND A HALF HOURS SLEEP LAST NIGHT AND I FEEL FABULOUS!
That is the longest i have slept in years!!!

Just wanted to tell you all

Wonderful, wonderful wonderful!!!!! Woo-hoo!! I'm so relieved for you. Tell us how the meds worked for you. Any weird feelings? Do you know which med helped which symptom yet? Any side effects? I know, a lot of questions too soon but I'm just really excited for you. I know how hard things have been for you and you deserve every minute of that six and a half hours. Bet ya can't wait to go to bed tonight.