RLS LIFE: Drugs, Side Effects & Everything Else

[sardsy75]

Hey Jan

No problemo on the post ... u know i usually vent in here when there's something bothering me lol. Still on my way to "crashing" ... was doing a last minute check of my emails when I got one saying that i had a response in my thread.

Click on this: Thyroid Australia Ltd ... it will take you to a rather informative page on thyroid gland disorders. The site itself is pretty good.

I've only done a little bit of research into this thyroid business so this is all still relatively new and strange to me.

Keep us posted on your doc appointment.

(((((hugs)))))

[jan3213]

Hey Nadia

Thanks for answering me so fast! And, thanks for the site.

I looked at it and I have 11 of the common symptoms, and 7 of the less common symptoms. Hmmmmmmmmm. I think this is a possibility. I've printed the info off and am taking it to my doctor, who just LOVES for me to bring info off the internet! (Can you HEAR the sarcasm in my voice?) Hey! I'm not going to give up on this one.

Wish me luck!

Jan

[ctravel12]

Hi Jan I am so glad that you saw the post that Nadia did. This is what's so wonderful about this board as everyone shares their stories.

Please let me know what the dr says and I am praying for you too.

Hang in there and will talk to you soon.

Nadia I hope all is getting better for you soon.
God Bless the both of you.

[sugbrendas]

I'm praying for you Nadia. You poor girl.
I too have had most of the symptoms you've had.

If you've learned nothing new today the best and most important thing in my opinion is not everything is RLS related.
Thinking it is is very dangerous.

I would hint for the Dr to begin a low dose of thyroid meds.
This should rule out the symptoms. Maybe put your levels on the edge of normal..See if any symptoms go away, it take awhile though. I'm not a Dr.

Just a opinion. I just don't see any other way to solve mystery's like that.

The one thing i've learned in the past year is stress is NOT my trigger for my RLS problems. This is good to know.

Good luck and keep us posted.

[SquirmingSusan]

Wow, Nadia, you've really been through a lot. I'm glad you're getting your thyroid checked out.

I've had issues with my thyroid for years. But the last 2 years we just haven't been able to get my meds right. Last winter I was totally fatigued and gained a lot of weight, but I figured it was stress related - My dh was going through chemo for leukemia, and I was trying to hold the family together and deal with everything.

But then last summer I started going to a weight loss doc and she tested my thyroid - TSH was 27! So back to the primary care doc, who upped my dose. Got the TSH down to 4 or something (the diet doc wants to see it at 2). T4 and T3 were both in the normal range. Then I got it rechecked in January when I had my augmentation "crisis" - TSH was back up to 17.

And that's the last I've dealth with it. I need to find a new primary doc. I'm going to make a promise to call around to clinics TODAY and start interviewing doctors. Between the RLS, the depression, the low ferritin, and the thyroid bouncing all over creation, I'm a mess. I told one of my doctors that I wish I could just meet with a committee of doctors and get this all straightened out.

Thyroid affects depression, depression meds affect RLS, RLS and pain cause depression, low thyroid causes weight gain and fatigue, RLS causes fatigue, low ferritin causes fatigue (but my current primary doesn't think a ferritin level of 8 is low enough to treat), and on and on.

Anyway, here's something interesting I learned about thyroid - T4 is a weak hormone, but gets converted in the body to the more active T3. Stress and other conditions can cause the conversion process to go wrong; the T4 gets converted to "reverse T3" which is inactive. Or the conversion process doesn't happen at all. Which is why it's important to have the T3 levels measured when you're having symptoms of low thyroid.

Good luck with it all, Nadia! I hope they get you all straightened out and fixed up and feeling good!

Susan

[sardsy75]

Like I posted in the SHHHHHH Thread, I've sent a few SOS emails to my sleep doc this week.

I'm lucky enuff to be flying to Brisbane (just over an hours flight) to see her later today.

The first email: Sent: Tuesday, 27 March 2007 12:01 PM

Dear Dr O

I think I need to come and see you!

I’ll try and make sense as I type but cant guarantee anything as I made the mistake of reaching for a 2mg Repreve last night in the middle of an attack only to have everything go ten times as bad.

I’ve had to take myself OFF Repreve. I had worked my way up to 4mg/day only for augmentation to set in with a vengeance. I started weaning myself off Repreve around mid-February. Why?
• Weight gain … I’ve put ON around 35kgs … and it’s doing nothing for my self esteem
• Extreme day-time tiredness to the point that I’ve come very close to falling asleep whilst I’m at a client, working
• The tiredness also makes me a danger behind the wheel of a car
• Augmentation and rebound are now a major problem

According to the Algorithm for the Management of Restless Legs Syndrome which was published in the July 2004 edition of Mayo Clinic Proceedings, when dealing with Refractory RLS, if augmentation develops with a second dopamine agonist, a change to a different class agent is mandatory.

When it comes to the DA’s I’ve pretty much had them all thrown at me:
• Cabergoline
• Carbidopa/Levodopa
• Carbidopa/Benserazide
• Pergolide
• Ropinirole

Since Repreve is the fifth DA thrown at me, I think its time that I faced the fact that DA’s just aren’t going to “do it” for me and that we need to look at something else. Don’t even think about Gabapentin … it gives me hallucinations from hell.

What do I think might work?
• Opiods
• Benzo’s

One of my previous neurologists, Dr S, put me on a high dose of codeine (in the form of Panadeine Forte, 3-4 tablets per night). I had to dump him as neither my GP, Dr K, or I received any response to our pleas for extra help.

The codeine seems to be the only thing that helps when I’m tearing my hair out in frustration and I’m relying on high dosages of Nurofen Plus (for the Codeine) at 4 tablets/night (plus whatever I might need during the day and Rivotril (Clonazepam) at 2mg/night to help me sleep.

……………………………………………………………………………………………..


Also … just to add to the mix of things …

Below is a rambling post I made to the RLS Foundation Discussion Board a couple of weeks ago:

(I copied and pasted my last BIG post re thyroid n stuff)

………………………………………………………………………………………………………..

So, yup, I’m a mess of sorts and I’m not sure where to turn.

My mood swings are horrendous. I’m exhausted even when I’ve done stuff all. I battle with my RLS until I’m in tears. I’ve been told I’m not pregnant (but I’m still wondering since I’ve just missed my third period!), yet my thyroid is out of whack, but not out of whack enough to warrant any medicinal help.

In my readings on the net I discovered that RLS, Thyroid and Fibromyalgia are all linked.

Could this be a possibility? My mum has had Chronic Fatigue & Fibro since she was in her mid-20’s but getting her to talk about anything medical is like getting blood from a stone and she’s on such a cocktail of drugs I don’t think she knows what she’s taking for what. We both have the same GP, Dr Khor. My mum just goes in and says “I’ll have a script for this, this, this and this thanks” and she walks out with them in her hand. She once asked if she’d benefit from seeing a specialist but when it came to what kind of tests and questions she’d be subjected to she decided she was better off self-medicating, which is essentially what she is doing. But, my mum isn’t the problem, well … she is in a way, since studies are starting to find that Fibro is more than likely genetic. RLS is genetic.

I’m at my wits end! I cry at the drop of a hat and poor Troy doesn’t know what to say or how to help.

I’d just like to be able to wake up in the morning feeling refreshed and have enough energy to go to work, take care of three kids, have some time with Troy and have enough energy left over to enjoy life a little.

We’ve booked to go to the reef over Easter … fishing trip. I’m Petrified!!!!! We’re going to be 100kms from shore and I know from past experience (last weekend being the most recent) that if I overstep the energy output levels by the minutest amount, my RLS will go ballistic.

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I started the Tony Ferguson diet. A month later, instead of stepping onto the scales and seeing a reduction in my weight … I’d PUT ON weight!!! That was a blow to the ego!

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I feel like I’m whining. I don’t have an illness that will kill me so why should I complain? I just have something that tortures me instead.

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Help?!

The second email: Sent Wed 28/03/2007 9:15 AM

Dear Dr O

What a fun 24 hours it has been!

My RLS hit with force at about 5.30pm last night. I took 4 Nurofen Plus. By 8.30pm they were still going strong. After the non-success of the Repreve from the night before I decided to try a different tact and took 2 x 250mcg Pergolide.

Bad move! At 9.30 I spent a good 20 minutes throwing up all over the place. I guess Pergolide is definitely off the list for good now! When I’d finally settled down and phoned Troy (who had somehow intuitively known something was wrong right at the time I was throwing up and had sent me a text message asking if I was ok!) to let him know that I was still alive & kicking, I took another 4 Nurofen Plus and 2mg Clonazepam at about 10.45pm. Legs were still going at this stage, but it only took about half an hour for the Codeine & Clonazepam to do their stuff and I was out to it.

I woke up at about 2am and spent the rest of the morning dozing until I had to get up to get ready for work.

I’ve got an appointment to see Dr K this afternoon. I’m going to ask for either straight codeine or Tramadol. I can’t work with the Repreve any more; and Permax I think spoke for itself last night; so I’m not going there again in a hurry.

Right now, on a scale of 1-10 … I’d put my RLS at a slightly bothersome 3 / 4. I can put up with that.

Thanks for listening

The Third Email: Sent Thu 29/03/2007 11:55 PM

Hi again

Yes, I should be in bed, but as usual, they’re doin their “Thang”.

I was going to send you an email last night but realized that I didn’t have your email address with me.

As I mentioned in my last email, I had an appointment with Dr K yesterday. Well, when I walked out, I had pretty much lost all faith in the GP I’ve been seeing for the past 19 years.

My legs were “going” all day yesterday. When he walked into the room, Dr K said “stop shaking!” … ya right! I had a copy of the Mayo’s Algorithm with me and had made notes on it so I wouldn’t get side-tracked or rail-roaded. I took him through my adventures with Repreve, including taking myself off it as even lower doses were not working; then told him about Monday and Tuesday night’s adventures.

I then basically said … “I’ve had everything thrown at me … and the only thing that works with any decent effect is codeine.” I mentioned Dr S putting me on Panadeine Forte back in 2004 although I cannot recall why I stopped taking this.

After a lot of to-ing and fro-ing, I straight out said “I cannot continue to keep taking Nurofen Plus in the quantities that I am each day as there is not enough research regarding the long term effects of the ibuprofen. Codeine is what works. Tramal is another option.”

I’m in constant pain from the RLS; my muscles ache, my joints ache; I don’t sleep. Troy takes one look at me in the mornings when I’ve stayed at his place and says “didn’t sleep last night huh?” It takes one look!

After mumbling something about Tramal being highly addictive (yet my mother walks in and gets a script whenever she runs out, go figure) Dr K started on about the side-effects of codeine. Constipation, etc, etc. I swear it took 9/10ths of my allotted 15minutes to get him to write the script for 100 30mg Codeine Phosphate tablets. He kept saying “this is a special script”. I know that! It was either that or I keep forking out for Nurofen Plus in boxes of 72 tablets at a time.

It was like he didn’t want to know … didn’t want to spend the time discussing my options. I know he’s a GP, but the Dr K I know, used to care about his patients, no matter what affliction they had. Since he’s gone and specialized in Skin/Dermatology and opened a separate skin treatment centre its like his General Practice has been put in second place.

So, I took my script out to the pharmacy. New pharmacist dispensed it and called me over personally. Very nice bloke, from England. Asked if I’d taken straight codeine phosphate before and what was I taking it for. When I said RLS, he looked a little bemused. I gave him the briefest possible rundown of my RLS, the drugs I’ve tried, etc, etc. Yet, he still insisted on taking me back to the stuff that I’ve already tried. (Don’t get me wrong, I’m not knocking this guy, he was well-meaning). He understood that it was a neurological, central nervous system problem and that I basically need something to “shut the nerves off”. His suggestions:

· Tri-cyclic anti-depressants – I’ve had both Endep and Sinequan … normally anti-depressants are an RLSer’s worst enemy but for some reason, my RLS did not get any worse (Endep prescribed by Dr W; Sinequan prescribed by Dr K, but not in that order)

· Gabapentin – thanks but no thanks, don’t like the hallucinations and out of this world trips. He did mention another anti-seizure drug that is similar to Gabapentin which apparently has had good results (with RLS I’m not sure about tho) but I’m unable to remember the name.

· Go and see the “Drugs Anonymous” group up at the hospital to see if they can offer alternatives to the path I’m facing … gee thanks … I’ll be labeled the instant I walk through the door … ADDICT!!!!!

I burst into tears when I got in the car. I burst into tears at the Medicare Office. I bawled all the way back to work.

When I’d finished for the day I came home, fed my cat, then got in the car and drove to Gladstone, trying to keep my emotions in check. Troy and the girls hadn’t arrived home when I arrived so I stood in the shower for about 20mins mulling over my week.

I was sitting on the bed, staring into space, just wrapped in a towel when they all arrived home. When Troy asked if I was ok, I just burst into tears and cried and cried and cried and eventually managed to summarise: I’m tired, I’m sore, I’m frustrated, I hate being tortured, I hate being tired, I hate being sore, I don’t know where to turn, I don’t know what to take, I don’t know what to do next, my GP doesn’t seem to care that I know what my body does and doesn’t respond to, I feel like I’m back at square one all over again. Plan B doesn’t exist, so what the heck to we do for a Plan C???

Well, for the moment it consists of: breakfast – 30mg codeine; lunch – 30mg codeine; bedtime – 90mg codeine.

Bedtime it is … the codeine has finally won the battle and I’m “still” enough to lie in bed long enough for the eyelids to close.

See you at around midday!

So that's been me this week.

I forgot to mention that my GP, Dr K virtually poo-pooed the fact that my thyroid had been flagged by the other GP I saw a few weeks ago while he was away. He basically told me not to bother getting the follow-up blood tests!!! What kind of care factor is that ??? I think i'll get the tests done and go and see the other guy!

I could've quite easily driven 15minutes to see my mum and dad on wednesday night, but it just didnt feel right. It's over an hour's drive from Rocky to Gladstone, but it was where my heart was leading me; and it was the right direction. After about 20minutes of listening to me crying on Troy's shoulder from outside the closed bedroom door, the girls opened the door and I heard Seanna (she's nearly 4) say "Is Nadia sad, Dad? Can I give her a hug?" She came around and climbed onto my lap , under her dads arms, and gave me a huge cuddle. She must've stayed there for a good five minutes. Bianca and Karrissa came in after that. They know that there's something wrong with me that "makes my legs hurt" and it really upsets them (and me!) when I can't do fun stuff with them. They're not quite old enough yet to understand all the in's and out's of the battles with drugs and doctors and RLS itself. Troy was just an angel (they all were). I've been so all over the place with this the past few weeks I know it's been terribly hard on him as well. He's just as frustrated when he can't do anything for me, but knows that just being there and listening and holding me when i'm sobbing and questioning why, why, why, is special to me.

It was eerie on Tuesday nite. I'd just reached for the chuck-bucket when my mobile phone went off ... text message from Troy "R u ok babe? Haven't heard from u for a while." I rang him after I'd finished my meeting with the "porcelin king" and even though he was so far away it was just comforting to listen to his voice as I struggled to settle both my stomach and my legs.

Well, i'm having one of those nights again. It's just gone 4:30am. I have the alarm set for 6:00am so I can be at work by 7:30am to do the pays; then have to be at the airport by 9:00am to check-in for my flight. It's going to be a loooooong day! This weekend is one of the three-weekly contact weekends that the girls spend with their mother too. I'm not going to be back in time to go for the drive with them. It's a 2 hour drive from Gladstone to GinGin where we drop them off and then they endure another 2&1/2 hour drive down to Gympie where their mum lives. So it's a good 4 hour round trip. I've only missed the trip one other time because I had to work late and the girls were really disappointed. This time its me who's upset at missing the trip. I'm going to make the effort to go down on Sunday to pick them up. We won't get back to Gladstone until around 7pm. I then have to come back up to Rocky and be out of bed at 5:00am monday morning ready to catch the first flight to Brisbane.

Think i'll stop there and go and get some rest while its still dark.

I'm not looking forward to all the flying over the next week. I'm already borderline walking stick reliant! Oh well. Gotta get around somehow!

Will post again to let you know how I go with Dr O today.

Love n hugs to all

[ViewsAskew]

What a story, Nadia. Sometimes I really, really, really, really hate doctors. OK, maybe not hate them, but I hate what they do. . more I hate what they don't do.

I hope all goes well with the specialist. I'll be waiting for a follow-up to see what she does. Fingers are crossed, dear.

[becat]

Hi Nadia,
So glad you caught us up to date about our girl Down Under.

You know I think this world has gone insane on us. Addicts, uuufffaaaa makes me want to fight. And the news of the day for weeks has been nothing but (on the medical front) that anyone who takes pain meds is an addict.

I know your trying hard to remain calm with these docs, but your better than I my dear. I finally just decided I was going to be blunt about medications...new doc or not and stay where I'm comfortable if possible.

Those girls sound like they have charmed your heart. That is wonderful. If they really want to help and it sounds like they do, give them small jobs for you. I know it sound guffy, but my boys when younger, would have done anything to make me feel better. I can honestly say the 2 of them can massage like angels. Of course as boys they would try hard to get me to jerk or wince, but the harder the better sometimes.
Let them play with your hair, rub your legs or feet.....all the while you can tell them a story to give your brain something to to or read them a book.
It's the silly things that make them feel involved that will be helpful to you all.

Gosh honey I hope appt. goes well.
Let us know and our prayers are with you.
Let us know you got home ok.
Hugs and a moon full of love to you,
Lynne

[cornelia]

Nadia,

I just read in dr B's answer to a patient's question that thyrod deseases have nothing to do with RLS; in his book it is also not listed as a reason for secondary RLS.

Of Fibro and CFS he says that 'it is thought that poor sleep quality lead to Fibro and CFS. The symptoms of these disorders often improve or resolve with successful treatment of RLS (yeah!)

Thinking of you, Corrie

[FoxFox]

I think you should try Requip. I think you can get some relief with this drug. I have had no side effects.My doctor just raised the dose to 5mg. a day. I have a tendency to do well for three months or so and then the drug stops working. Keeping my fingers crossed this 5mg dose works. Feel better

[Neco]

She's already tried Requip, as well as many other drugs in it's class.

[sardsy75]

Ann ...
The ONLY reason i'll be making an appointment to see my GP, Dr K in the next couple of weeks is to get a renewal on my referral for Dr O for another 12 months. Then I'm going to have that next round of blood tests. After that, I'm going to make an appointment to see that lovely new young GP who actually gave a cr@p that my TSH levels were a lil out of the ordinary.

Lynne ...
I remember when Dr S put me on Panadeine Forte back in late 2004 it caused one heck of an argument between my ex-hubby and I with regards to the difference between addiction and dependence. It went on for days!
The girls are wonderful. I did go for the trip down tonight to pick them up, despite the fact that my walking pace is down to a mere shuffle and i'm in constant pain from my waist down. I've taken your advice on board about the massages and story telling. I think it will do us all good, particularly when I've moved in permanently.

Corrie ...
Good to see that you're still lurking about over there my dear! Thanks for the info on Dr B's stuff. I'll have to go back through my bookmarks and find where I read about the link.

FoxFox ...
The only DA I haven't had thrown at me is Pramipexole, simply because it aint available in Australia. Thankyou for your considerate thoughts though! Requip/Repreve is the DA I've just come off. If you go back through the post I wrote on Friday, you'll see the list of things i've been on.

Zach ...
Thanks for the heads up to FF.

Ok ... "the visit"

I had to haul out and dust off the walking stick on Friday morning. My legs just weren't playin the game!

The plane trip down wasn't too bad ... well actually, I took 30mg codeine at 9:00am, by 10:30 (halfway through the flight), my legs were still enough to let me doze for the remaining half hour of the flight. We landed at 11:15am. This is the point where I usually feel like shouting at people "Would you prefer it if I had a plaster cast on my leg to justify the dang stick???" Grrr ... I waited until I was literally the last one off the plane, but as i'm walking through the arrivals hall, I'm caught up and overtaken by rather impatient passengers from other planes.

I had organised a hire car to get into town from the airport. My appointment ... well, it was literally whenever I got there lol! About 5kms from the airport i got stuck in gridlock as there had been a four car pile up on the motorway! I rang Dr O's office and her PA said, "no problems, Dr O's got plenty of paperwork to wade through here, just take your time". I finally hobbled/shuffled/something lol through the door to Dr O's office at 12:40pm.

Dr O ushered me in and said "well ... you're a bit of a mess aren't you?" and we both laughed. She then said "I like your emails" and I responded, "well, if somethings going wrong there's no use just giving you dot points when i'm so far away!" She laughed again. I gave her the copy of the Mayo Clinic's Algorithm that i'd scrawled all over for Dr K and we pretty much went from there. She said that she had toyed with the idea of putting me back on Carbidopa/Benserazide (Madopar) but had great concerns about augmentation and rebound. The look on my face must have given her my answer lol. Ok, we forget the Madopar. She went back through her notes and we discovered that the reason I was taken OFF the Codeine last time was because I have a real problem with withdrawal from it.

Soooooo ... Plan "C" (coz Plan B didn't ever exist!) ... Clonazepam ... with Codeine as the backup.

My daily drug regime is now as follows:
- breakfast - 0.25mg Clonazepam
- lunch - 0.25mg Clonazepam
- dinner - 0.25mg Clonazepam
- bedtime - 1.0mg Clonazepam

She was concerned about the "drowsiness" effect during the day, so far so good after two days and I slept like a log both Friday night and Saturday night ... although I think that was a combination of pure exhaustion, and drugs. So, will have to give this a good month to see how things go. I say a month because the next ten days are madness for me.

Dr O also said that I must follow up on the thyroid. So I'll be doing that as i said a lil earlier in this post.

She's a little worried about our fishing trip next weekend; since I'll be 100kms from anywhere to run. I just said i'd be taking the whole box of codeine as backup. She was happy with that lol.

I have another appointment to see her, in Brisbane, on June 4th. Same deal as Friday, my appointment is whenever I get there lol. I like this Doc!!!

I fly to Brisbane at 6:30am tomorrow (Monday) morning and fly back Wednesday night at 7:00pm. I have to cram three days worth of work into one day on Thursday then drive from Rocky to Gladstone on Thursday evening as our fishing trip boat leaves the marina at 10:00pm Thursday night.

As I left to come home to Rocky tonight Troy said to me "gawd i hope you're not like this (shuffling) next weekend!" I just said, "just gonna have to take it as it comes! I cant guarantee anything!".

Well, that's pretty much it in a nutshell. If you want to know anything more, feel free to ask. It's just gone midnight and i havent even packed a bag yet, let alone my laptop and my flight leaves at 6:30am! So, i'd better get going!

Love and hugs from down under!

[ctravel12]

OMG Nadia I just reread all of your posts. I am so sorry for what you are going through.

What a nightmare this must be for you and all the e-mails to the drs.

I will keep on saying prayers that things will work out better for you.

I am sorry for not posting too much, but I am at a lost for words. I wish I could offer more then this. I know for sure I will be here for support.

[Neco]

Cool beans

[sugbrendas]

Hi everyone,

i've read some of your posts. It hurts my heart to see some of you still suffering.
re; Klonopin
I take all of mine(2-3 mg's) at bedtime with no day time sleepyness.

Weird situation going on right now and i'm not complaining just venting.

The allergies hit me so hard for the past 3 weeks so i quit the Niquil and have been taking the severe flu and congestion either tylenol or whatever is for nights. AND 2 Benadryl at night.
The buggy sensation is driving me nuts! Sometimes i could sign a affidavit swearing there are bugs on me almost all over.
Plus i've been jumping up exactly one hour after i fall asleep, look at the clock and go back to sleep. It's gotta be the decongestions.

The good news is the allergies are letting up and then i can go back to Niquil.
It's always something.

dh is having his 3rd surgery next tuesday, and a MRI this friday for his cancer follow-up. Please pray if you will.

hugs,

brenda