RLS LIFE: Drugs, Side Effects & Everything Else

[sardsy75]

As for sleep ... getting to sleep is no problem. It's whatever's waking me up at 4:30 - 5:00am every morning for the past week that's bugging me.

No ... not a loo stop (bugga ... coz i'm havin enuff troubles goin #1 as it is!)

Got me befuddled.

On top of that i'm having dreams that are so real that when I wake up I have to sit up and take stock of my surroundings, check the clock, and check that, yes, i'm in the right bed. It's downright annoying.

So, on the sleep front ... I'm getting really tired from the dreams. They're very "active" dreams if that makes sense; and sometimes I'm screaming and shouting in them and when I wake up I wonder if I've been shouting out loud.

Um ... yeah ... very tired from all the "nighttime cerebral activity". I don't "do" bags under my eyes usually, but they're lookin like suitcases at the moment. I'm thinkin it's stress related ... The Big Bloke knows we're copping a tanker-load of it.

I'm not so sure that my M.E.I. has been completely knocked on the head despite a double dose of penicillin coz when I yawn it hurts really bad. Great!

The other thing is that my mum had her first knee replacement done on Wednesday. The op went well (3 & 1/2hrs) & I think she starts light physio today (Fri) or tomorrow. All going well, she's having the other knee done in a few months.

Rite ... bed ... nite (actually: mornin )

[sardsy75]

OK ... I am getting beyond the stage of just been smurfed off each afternoon between 3pm & 5pm when my brain decides its time to go from snafu to fubar without warnig.

I hate it!!!

I desperately want to go up and visit mum and dad.

Troy wants to take me fishing.

I WANT to do both but my brain keeps fighting me and beating me down into a teary mess.

For smurfs sake I could barely drive to the pharmacy just now.

I'm trying to be strong in so many ways but this is the one thing that beats me every single time.

I WANT IT TO STOP!!!!!!!

[Sojourner]

s, Uugh! and Uugh again! Sorry things are so bad and send wishes and hopes that you will have a better day today. It's more than frustrating and terrible when this disease so drastically changes ones quality of life and inability to do even the simplest pleasures. I confess to not being "up to date" with all your specifics. Seems you time frame for the "uglies" is so specific that you would think something could be found or some med schedule could be worked out to help combat those several hours. I'm sure you have followed all the usual "advice." Is there anything you do or meds you take that precede this time (even by a couple of hours) that you think might be making things worse? Any adjustments you could think of that you haven't tried?


I know about those dreams. Requip was the culprit for me.


Best wishes for a better day.

M.

[Neco]

I can always tell when I may be vocalizing in my sleep, because when I make an effort to yell or whatever it always comes out muted or feels like I'm physically struggling to make noise... Not sure if its just me or other people are like that.. I have a theory that I'm trying to yell but its interrupting my breathing so I'm basically out of breath or whatever.. Kind of like when someone gets sucker punched in the stomach/solarplex and they sound all funny..

It's very weird, cause obviously some people talk in their sleep and don't have that problem, like my brother.. But even in the middle of the dream I can feel what's really happening with the breathing instead of it feeling like when you naturally yell, etc..

[sardsy75]

I confess to not being "up to date" with all your specifics. Seems you time frame for the "uglies" is so specific that you would think something could be found or some med schedule could be worked out to help combat those several hours. I'm sure you have followed all the usual "advice." Is there anything you do or meds you take that precede this time (even by a couple of hours) that you think might be making things worse? Any adjustments you could think of that you haven't tried?

Hey M

I've tried all sorts of concoctions. My trouble is that some things may interact with other things.

Here's what I'm on:

Morning (7am - 9am)
1.5 x Lexapro 10mg (Escitalopram) ... For Anxiety
1.5 x Oroxine 100mcg (Thyroxine - T4) ... For Hashimoto's Disease
~~~
2 x Multi Vitamins (Cenovis Family Multivitamin)
1 x Cenovis Women's Iron Plus
1 x Inner Health Plus
2 x Schuessler Tissue Salts General Tonic - Comb 12
1 x Ethical Nutrients Immune Defence


Bed (8pm - 10pm) (Alarm on my mobile phone is set for 8:30pm)
3 x Endep 50mg (Amitriptyline) ... my brain's "off switch"
1 or 1.5 x Rivotril 2mg (Clonazepam) ... what keeps me asleep when my brain has switched off
2 x Panadene Forte (Paracetamol 500mg/Codeine Phosphate 30mg) ... for the pain
1 x Yasmin (Contraceptive Pill) ... pretty obvious
~~~
1 - 2 Herron Valerian Plus 2000 (Valerian 2g Magnesium Oxide 83mg)
2 x Schuessler Tissue Salts Nerve Nutrient - Kali Phos
2 x Scheussler Tissue Salts Muscle Relaxant - Mag Phos
2 x Scheussler Tissue Salts Glandular Tonic - Kali Mur


Daytime Breakthrough Symptoms
0.5 x Rivotril 2mg (Clonazepam)
3 x Nurofen Plus (Ibuprofen 200mg/Codeine Phosphate 12.8mg)

So ... i'm stuck with the Clonazepam & Ibuprofen/Codeine for breakthrough symptoms.

I did trial taking 25mg of Amit-yada with the above mentioned, and it DID work however, since it's my brains "off switch" i was rendered utterly useless; so that's a last resort.

I've also tried 1 x 0.125mg Ropinirole. However, i've discovered that I can augment on even this tiny dose if I take it for more than two or three days at a time and it takes a looooong time to take effect if you're already thrashing about.

February 17th won't come soon enough!

[Aiken]

Nadia--

I'm assuming you know this, but in case you don't, that amitriptyline might be exacerbating your RLS.

[sardsy75]

Hi Aiken

Yes ... i know. I've been using it for the past four years with great success.

However ...

My exacerbation could be one of a few things:

1 the increase in amit-yada that my ex-gatekeeper approved back in sept/oct 08
2 the ginormous amount of stress that has been drapped over us like a sodden woollen blankent, by people with intentions of doing nothing except make our lives a living misery (since april 08 )
3 both

We've just arrived home in the last hour from visiting my parents for the weekend. My mother had a knee replacement surgery done last Tuesday and I've been her "physio" for the past two days (yes, she came close to swearing at me because I was pushing her to her limits ... and yes her fibromyalgia and chronic fatigue have done nothing to help the situation either).

Anyhoo ... when I went to take all my bedtime medications last night I discovered I was one (1) amit-yada tablet short. Searched the bags, searched the floor, searched the bed ... nothing.

Today, i'm like a limp dishcloth. Yes the bed was extremely comfy, as was the pillow, but I simply didn't get the kind've night's sleep i've been getting.

It's hard to explain.

My other option is to increase the Clonazepam, but i'm already taking 2-3mg/night and I REALLY don't want to increase it. Been there - done that - did the detox - still here buggin everyone.

A possible alternative that has been suggested to me is Mirtazapine (Remeron in the U.S.); and I'd REALLY like to get further in a conversation with a doctor about the use of tramal.

Maybe we need to dig under some rocks for some gold so I can take Troy with me ... ???

I have a feeling i'm going to be taking a note book the size of a decent novel to this dang appointment ... in a month.

[sardsy75]

Gotta luv brain fog ...

The other thing is that the Thyroxine may be affecting one or more of my medications (or vice versa).

It has also had an increase from 100mcg to 150mcg in sept/oct 08.

So it has to be taken into account as well.

I really wish we could get "full body refunds".

[cornelia]

Nadia, just to be sure: remember the list of AD's that were tested for RLS side effects I gave you the other day? Remeron tested for 25 % or so for getting worse RLS. So bear that in mind please.

Corrie

[Polar Bear]

Hey Nadia..... sorry it is all so awful at the moment.... for many moments.
Roll on Feb 17th.

[sardsy75]

Hi Corrie

Thanks for the heads up ... I'd completely forgotten about that ... and i've even printed the dang thing out too!

Too much on my mind methinks.

Thankyou my friend xoxo

[sardsy75]

Hi Betty

Yes, it's just one thing on top of another and another right now; and i'm startin to literally count down the sleeps to Feb 17th.

I'm thinking about going back up to Rocky to stay another couple of days to help mum (and dad) again, but I felt so washed out and drained when we arrived home yesterday evening, that i'm not sure that Troy would agree to letting me go.

Today, both my hands/wrists, both of which have had surgery on them, are aching badly from doing the physio exercises with mum. The fibro caused her left foot to be a literal dead weight so I was supporting it for 98% of the time as she did her "leg lift" exercises, 10times every hour.

The biggest thing I had to get through to her is "there's no such thing as can't" ... lol she didn't like that coz I said that everytime she said "i cant do it" to which i replied "no such thing as cant, so just do it".

She has to do it if she wants to get the other knee done in a few months time. By that time she'll be a pro. The surgeon did give her the option of having both knees replaced at the same time, but I really dont think she would've handled that very well at all.

Righto, i'd better start makin some phone calls.

Take care

[sardsy75]

Righto

Since every Tom, Dick and Harriette are on my back "reminding" me that most RLS'ers and Amit-yada dont mix well ...

... I've decided to do an experiment.

As of tonight (Monday 19th January 2009), i'm going to reduce my dosage of Amit-yada from 150mg to 125mg and stick to it for a week.

I will let my counsellor know tomorrow; she'll hit the roof, but i'll deal with that.

As for whether I tell my Sleep Doc or Gate Keeper about it ... well we'll see ...

I have not yet thought about the consequences of this 7-day trial I'd just like to get through the 7 days first.

By the time these 7 days are over, the girls will have returned from their mother's and I will be in the middle of back-to-school household mayhem.

I'd also like to take this opportunity to remind everyone (old and new members alike) that I have been using Amit-yada for 4 years.

When I first mentioned that I was on it all those days ago, I can clearly remember our dear friend Jumpyowl nearly going through the roof at me (along with a few others) ... only to have to back off when the Amit-yada did exactly what it had been prescribed to do: Turn my blimmen brain off at night so I can sleep.

I know i've been the "black sheep" in a he11 of a lot of ways not only on this Board but as a Familial Refractory Chronic RLS sufferer myself, so please, dont beat me up when something that doesn't work for 99.98% of the RLS population, somehow works for me. Do you really think that I like being one of the very very few that bucks the trend??? I hate it!

I wish I could come in and say that "yes, this abc medication has worked for me with no trouble for years!" But, no, i've been through pretty much every Parkinson's drug available in Australia (not to mention the rest that have been tried and turfed) and I thank God that my Sleep Doc had the brains to figure out that DA's and a few other things just dont cut it in my backyard.

As it's been said probably a million times on this Board ... RLS is different for every single one of us.

[sardsy75]

If I offend anyone with my previous post ... get over it.

Right now, the way I feel, I'm thinkin Dr Jeckyll has been removed from the scene and Ms Hyde is In Da House.

Oh Crap!

[SquirmingSusan]

It takes a whole lot more than that to offend me!

If the amit-whatsit works for you, then by all means, take it. Especially if you're sure that it doesn't aggravate your RLS. I've heard of others who take it as well, and don't have a problem with it. I take Lexapro or Effexor (jury's still out on which I prefer) and I know that they don't bother my RLS at all. I'd also like to give Remeron a try, even though it has a better chance of bothering my RLS than the other antidepressants I'm on, because it also has a better chance of helping me SLEEP. And aren't we all on a quest for glorious sleep?!

OTOH, I also have a serious case of monkey-mind/mental hamster-wheel, and for a while there I was actually able to shut it down with meditation, so I know that it's possible. But in the competition between meditation and medication, I generally opt for the latter. Not that the medication really shuts down my brain; I have full-length feature movies in my sleep.

As for thyroid hormone - I have never heard that it can interfere with any other meds. It's a natural hormone. I do know that food and supplements can interfere with the absorption of the thyroxine, though. I have just a helluva time keeping my thyroid levels regulated. I've been begging my doctors for "goatroid" -natural thyroid, but they don't like that idea. But there is ONE doctor locally that I know of who will let people use it and take as much as they need to feel good; screw the lab tests. I've got to remember to book an appointment with him.

Do whatcha gotta do, girl, to feel good! And there's no law saying you have to explain anything to anyone.