RLS LIFE: Drugs, Side Effects & Everything Else

[jbj]

I took Neurontin for quite awhile in addition to requip, I had to stop the Neurontin, though because my feet began to burn and tingle. Since then I picked up tramadol in the afternoon and my requip, and I have been fine for several years. I have tried Sinemet CR, Mirapex and over the counter stuff. The Sinemet and Mirapex worked, but only for a short time. Only the requip seems to be hanging in there. The only side effect has been occasional sleepiness, shortly after taking it. I recommend it highly, although, I know that everyone's body reacts differently to meds. Good luck with your search.

[sardsy75]

Thanks for your post jbj. Yep, i've done the Neurontin thing, with disasterous results ... Can't say that I really enjoyed the "off my face" feeling or the hallucinations. So that got the flick really fast.

At the moment I'm on a combination of Clonazepam, Amitryptiline, and Codeine. In my "Backup Box" I have good ol Levodopa/Benserazide and Ropinirole. I must note here tho that since our day-to-day life has been broadsided by one very big stress factor that I cannot name for legal reasons, I have added 0.5mg Ropinirole to my mix and take 0.25mg in the morning and 0.25mg at night with everything else to cope with said 24/7 breakthrough symptoms; and if things get REALLY bad, I haul out extra codeine (and keep a note of it so I don't get the "gee you went through this script pretty fast" comment).

You know I'm startin to think I should get everyone who's either on Tramal, or used Tramal in addition with Requip, Mirapex, etc, etc, to send me enmasse (sp?) ... PM's or emails that I can hand over to my Sleep Doc and/or Gate Keeper and say ... what is your problem with giving out anything better than Codeine?

ARGH!!! Every time i've mentioned Tramal during an appointment, the subject has ALWAYS been changed.

Maybe I need to contact one of the Neuro's I used to go to who was the ONLY specialist i've seen that recognised ... 3 years ago ... that the Pain Medication Route was pretty much gonna be my life.

I might also email Dr B and ask him too. What the heck, i've got 3 whole months to wait, to get to Brisbane (and a whole 3 months to save up for the cost of the flight!).

Betta go do some washing ...

[jbj]

Hmmmm. I don't understand why your doctor is avoiding tramadol. I have never used it as my only med, just in conjunction with requip. My doctor has mentioned codeine among medications that help the symptoms, especially in the distant past, but he has never prescribed it. I can't say it is something I have asked for, there has just always been something else to take.

[becat]

Hi Hey Aussie Sweet,

You know after I found this safe harbor, you, Jumpyowl, and our sweet Rubysippers caught me and saved me from the edge. I learn daily, as we all did. That knowledge added up pretty quickly and certainly we did turn out some amazing finds.

Taking what we all worked on then and putting it to use know, I understand that I HAD a greater chance of lasting longer on a smaller dose of a dopamine (Mirapex is what I used), if my doc would have offered me some pain med to help my body and brain out a bit.

I know it takes time for any doc here (USA) to offer pain meds., because the risk to their own career is higher than the seemingly awful risk to the patient.

I don't know why the Aussies won't help you this way, it only makes sense, but not to them I guess.

If it helps I will email you my thoughts and what I take now because I augmented, and know because, my body was left to fight for itself so long. The pain meds. help RLS at higher severity levels. It's a known fact.

It is my belief that a little of both could have changed my life, my health, and my daily intake now.

I hope your doc sees the light and certainly, that 3 months thing, is for the birds.... fax, email, call til they drop! Babe you deserve to have a great Quality of Life. And with the added stress, it's a known that your body will fight you right back. No two ways about that.

Breath, no big full breathes, as our sweet Hazel would tell you. You need nothing less than help. And that is what your doc is there for.

If you have to, evoke Jumpy's favorite thing, the oath they take to become docs.!

I love, hug, and fill the moon for you.
Lynne

[sardsy75]

Two words ... life sux

Seventeen words ... Some people in this world have NO idea how their actions can detrimentally impact on someone's life

[sardsy75]

I'm sittin under an Apple Tree ... thinkin about Oranges

[ViewsAskew]

I keep hoping that the next post will show forward movement out of this mess. I know that kids don't always get the full picture - which is why we prevent them from doing certain things - but that makes it even harder. You want to kill them...but you don't ever know if they "got it" or not when they did what killed you.

[sardsy75]

Yes my "happy face" is on in all the other posts I've made in response to other members.

Ann, I wish the problem was ONLY the kids (who haven't been too bad the past couple of weeks), but, unfortunately it ain't ... they're being manipulated to the point that they don't know if they're Arthur or Martha and I wish I could make the manipulation stop!

So ... I'm still under the Apple Tree, thinkin 'bout Oranges ...

Stress ... Rain ... Stress ... Humidity ... Stress ... Bein Sick ... Think I mentioned Stress ...

Apple Tree ... Oranges ...

[sardsy75]

Can't seem to get the Apples and Oranges theory of philosophical thought to work so it's just gone to jam.

I am going to see a new GateKeeper tomorrow.

Rather daunting feeling particularly since i've had so many problems with my RLS over the past ... well ... actually truth be told, i've lost count since i've gone a day and/or night without any symptoms lately.

What happened with my last GK? Long story ... cant be stuffed telling it. He's got the flick and I've been assured that this new guy is very good ... we'll see.

Remember that CT Scan I had a few weeks back? Well, anyway, i've not been able to get anyone to decipher the report for me, so i'm going to take that with me. I "googled" one of the main sentences and the results I got back were not of the kind that I really wanted to read ... things in the brain that start with ... T ... just hold that thought in case "google" got it all wrong and i'll get back to y'all.

This guy's gonna think "what the???" but i'm going to go well armed ... 2008 Medical Bulletin, Mayo Algorithm, my Sleep Doc's phone number if it's all to much for him (or me ... HA!).

Righto, i better go to bed. I've been arguing with my laptop and my ipod for the better part of two hours ... they just don't want to talk to each other ... maybe they need counselling ...

[sardsy75]

BTW ... for all the newbies that have come on board the RLS Family Cruise, this thread has kinda become my "blog"/online diary or whatever you wish to call it.

I keep posting under the same heading for the simple reason that anything that relates to my own RLS journey can be easily found ... by ME ... in a hurry ... or by the numerous people hanging around here who like to keep track of the crazy Aussie chick (who has hairbrained ideas like doing complete detoxes from ALL of her medications and starting afresh ... I kid you not ... coz the idea has crossed her mind ... again).

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

Now, as I was saying ... off to bed ... with a book. My dearest Troy has crashed and is snoring quietly, yet loud enough to keep my brain ticking over and ignoring the "off switch" drug that technically should've kicked in ... oh lets say ... bout 2 hours ago ...

Nuff said

Nite

[Polar Bear]

Well lets hope aussie chick got some sleep zzzz....

I see you googled, isn't google great, and isn't it a nightmare.

To reassure you, I went for a recent endoscopy which was all clear.

Ok, still don't know what caused the symptoms, and still have a test or two to do, ........but when I googled, I had everything from hiatus hernia to cancer of the oesophagus, and everthing in between. Too much information sometimes.

Good luck with getting a report on your CT scan, and with your new GK tomorrow.

[sardsy75]

Ty Betty xo

I got some sleep ... not as much as I would've liked, but you get that.

Yes Google can be an interesting place lol; that's why i decided to get the GK to decipher the report.

Saw my new GateKeeper. He is SO nice! I'm not sure if it helped that I was smack bang in the middle of arguing with my brain and legs when he called me into his office, but when i said "Restless Legs, Refractory and Hereditary" he said "Ah ha ... No problems ... wriggle away".

Spent a good half hour with him, going through ALL the medications I'm on, what dosages, when I take them, what I take when I have breakthrough symptoms (like right then lol). He didn't argue with me about my decision to NOT increase my clonazepam (been there done that ... then detoxed ... wasn't pretty). The best thing was ... he didn't say "Get Over It!". It's not until today that i'd really thought about that lil catchphrase that my old GK had. "Get over it" ... sometimes that aint the right thing to say to a patient who's ready to find a way to take her legs off!

The other thing that surprised me was that when we were discussing the codeine, he didn't even blink when I went on to mention other pain medications, including that I knew several people on methadone (didn't name anyone!) with successful results. He did say it's not the ideal road for RLS but since i've been up and down the DA road so many times, it may, in the end, be my only choice. So, sounds like he's willing to work with his patient ... yay!

He wrote a letter to my Sleep Doc letting her know I'd been to see him, and when I rang her office after my appointment finished, they were just about to fax the letter from my Sleep Doc back through.

Got really good vibes the second I walked through the door. Was a friendly place. Totally different atmosphere to where I was. My last GK was good, it was the rest of the place that wasn't so good. Oh well that's life.

Now, CT Scan results. He read thru it all and said, you have some abnormalities in your brain, HOWEVER, they're showing up in the spaces in your brain, so they're not affecting your brain. So, I have a cyst near my pineal gland but it's behaving for the moment and I have calcification in one of the ventricles that distributes Spinal Fluid but it's not at a stage where it's actually blocking the ventricle. As for the headache, it's a problem that can be caused by a spasmed muscle and nerve in the neck, so I just have to keep an eye on that. That was a relief!

As for RLS ... I'm going to sit down and do some calculations, email my Sleep Doc and see if she approves of my changes and then go back to my new GK

I'm thinking its the dang weather and mega-stress that's causing all my problems at the moment. I don't think it's the Amitrip-yada ... but I might do a lil exercise and taper it back over the next couple of weeks. If it DOES turn out to be the problem, then I have to find another "off switch" for my brain. Not goin there right now.

The breakthrough symptoms are making me very frustrated to the point that if we're sitting down for dinner and i'm having trouble, i'll actually give my knife and fork to one of the girls or Troy, and just sit there until I can calm myself down enough to continue eating without wanting to use the cutlery for other purposes.

Yes ... the happy face is on. No "that stress factor" hasn't backed off yet.

Just takin it one day at a time.

PS ... i'm noticing that my spelling is getting rather bad, i'll leave letters out, add letters, or just mispell things completely. Not sure why this is so, so please, when you read one of my posts and there's a word that doesn't quite belong, I apologise for my brain not being quite with it.

[ViewsAskew]

PS ... i'm noticing that my spelling is getting rather bad, i'll leave letters out, add letters, or just mispell things completely. Not sure why this is so, so please, when you read one of my posts and there's a word that doesn't quite belong, I apologise for my brain not being quite with it.

I started that a while back - maybe a year or so. It's much, much worse when I've had very little "good" sleep. I can sort of tell, actually, how I'm sleeping by how well I can access left brain stuff like spelling and actual words. DH is getting very skilled at interpreting right brain stuff like, "fruit, round, in pie" for apple or "married to your brother" for my SIL, etc.

[jacksgramma]

Geez Nadia,


No wonder you're never hungry. You're always putting one pill or another down your throat. (Don't mind me, I'm just trying to bring a little humor to a very serious problem).

I hate to think that my RLS can get soooo bad, that I am taking all those pills. I hope your neuro comes up with something better for you tomorrow. I am very interested to know. I think we all are!

Sleep well and keep us posted!
Denise

Hello Denise I am new here but not new to RLS. I am 51 years old, and can remember back to when I was 5 with RLS. Over the years it has been better because I am stricken with Fibromyalgia and a very bad lower back. So I have been on many medications for the pain and to help me sleep. Those medications would pretty much knock out the RLS. But recently I was prescribed cymbalta for my Fibromyalgia, it is supposed to block the pain sensor in the brain from making me feel it so badly. It works, today is day 11. But the side effect of cymbalta is RLS for me. It is very bad. So I've timed when I take the cymbalta to 4:00pm so then when the RLS begins I've already taken a both doses of night time meds and I avoid the RLS. I pray this continues to work. I take vicoden, xanax, trazodone and benedryl.

Nice to meet you all,

Lori

Gramma of Jack, Emmy and Luke

[SquirmingSusan]

Hi Lori, welcome to the forum. I just have a minute, but I noticed that you take Benedryl. That is the one drug that almost always makes the RLS go crazy. Cymbalta is also a possibility, but I would try eliminating the Benedryl and see if it gets better, before deciding that it's the Cymbalta...