Not so good.

[ookla]

Where we last left off, things did not look good for the rebels. Ookla had been frozen in carbonite and... oh, sorry, wrong forum. I mean, yesterday morning I took 5 mg of methadone around 8 am and there was no change in my daily symptoms. Around 8 pm, I decided to double my dose, so instead of taking 5 mg, I took 10 mg. To my surprise I was able to sit on the couch to watch tv and lay in bed without my legs bothering me; however, I wasn't able to fall asleep and stay asleep (I would fall asleep for an hour, then wake up for a little bit, then fall back asleep, then wake up again, and so on all night long). I guess insomnia shouldn't be too big of a surprise with new medicine, but not getting a good night's sleep kinda defeats the whole point. But I think that would go away after awhile. Anyway, fast forward to today. Took 10 mg of methadone around 8 am this morning. I think my leg pain feels better than it usually does, but I'm way nauseous.... I came really close to vomiting a few times. Luckily, I found some ondansetron (anti-nausea pills) and that seems to be helping. Still having trouble keeping my eyes open, though - I think that's a combination of the drowsy side effect of the methadone plus not getting much sleep last night. So that's where things are at right now. I really wish I could remember how I felt pain-wise and side effect-wise on the gabapentin so I could compare the two to decide which one is better. At this point, I'm not sure about sticking with the methadone. I don't think we should increase the dose any more than this. But I should probably give it a few days at this level before making any decisions.

[Hidden]

I do really hope that you can find a dose that is comfortable both day and night, remember that it takes a few days for the brain to react on a new drug. It took my brain two weeks to react properly on my spinal morphine pump.

Do write a pain diary every day, it is worth much to be able to go back and look how it really was.

[ookla in reply to Hidden]

That's a good idea, I wish I would have done that when I was on gabapentin. I'm feeling much better right now regarding the nausea, but my leg pain is back already... what a waste! I'll still give it the weekend to see how it goes, but it's not looking too good.

[Hidden]

Here's a wild and crazy thought..We absolutely have to look at this..

That's a good dose of narcotic..when taking narcotics, they do make us extra tired..it

can be impossible to open your eyes just as you have stated above..Is there a chance

that you keep waking up because narcotics give you apnea? There have been some

people that said that narcotics can cause that and they end up jumping awake..

It's something to consider..do you wake yourself up trying to get a big breath in? I do

not have apnea but after a surgery, I did get it because I was on such a heavy dose

of pain medicine...My alarm for apnea went off too many times so they had to re adjust

the dosage...I probably should have been on a ventilator a little longer... because I

just couldn't wake up all the way..

The fact that you are nauseated - I am backtracking from your last post..I missed this

one...now we know 100% that 10 mg of this dose is not going to help..if anything, it

will do more harm...But with any narcotic, you will have to cease from driving..that's

that...but narcotics aren't forever..right? So let's move onward to other treatments..

I can not remember if you tried Mirpex (pramipexole) WITH gabapentin... It's not that

unusual that the two are combined...There is a chance that they could wipe out

the nasty symptoms of RLS and you won't have to give up driving, you might not

feel sick...

Can you please give me( and anyone who's following this) a review of the medicines

that you tried that didn't work, including narcotics...Please..I want to help and some

others really want to help you sort this out...I hate to ask you to repeat the treatments..

but I can't continue without knowing...=) Hang in there...we can all help, probably..

xxx Karen

[ookla in reply to Hidden]

Thanks for replying to this. I don't mind repeating my medication attempts. I've tried Advil, naproxen, prednisone, cymbalta, chiropractor, mirapex, requip, Horizant, nupro patch, tramadol (was a godsend for three months, then stopped working and gave me sleep apnea that went away when I stopped taking it), magnesium, vitamin d, homeopathic supplements, tomato juice, physical therapy, massage therapy, gabapentin, klonopin, and methadone. I might be forgetting something. Now that you mention it, this drowsiness is exactly like when tramadol was giving me sleep apnea, so you're probably right, I bet the methadone is giving me sleep apnea again.

[Hidden]

You are pretty much like me with your sleeping hygiene..It's not enough for either of us.

Did you try the Gabapentin along with Mirpex? Some do have success with that..

I am thinking of asking the doctor to try a combination of an anti seizure medicine along with the mirpex (pramipexole) I am getting to be crabby on 3 hours of sleep..all week for 6 or 7 nights this goes on for me.. My legs are nutty at night and less so during the day but still very much out of control..I put some heavy weight on my lap..and it helped me just today..but

I can't sleep like that..heavy weight is hot.. Sweedish is a member on here, she was given

a morphine pump...given that it only takes a tiny tiny bit of morphine, it shouldn't cause

apnea..I am thinking that a consult is not out of the question for you, for me...but I haven't

been on Requip yet..so I still have that option...but you might be a perfect Canaanite...

I'm sorry, I don't know where you are from...what area..so I don't know if the morphine pump is even an option for you but if it is..there is not a better candidate..than you.

Now that you said something about sleep apnea...lets think on that...it can and does cause

the body to gasp for air or a loud snore, no snore could wake you up suddenly..if you had that on tramadol which is such a light narcotic...I can almost say for sure that it's contributing to why you are not getting refreshing sleep...Its a very good idea to see a sleep specialist..if you are given a machine, then you will at the very least breathe all night long..

no matter what drugs you take...Ookla..I think that you should do this fast...suggest it to

your doctor..lack of sleep can bring on the most severe depression and you won't feel so good. thanks for sharing what's going on...we all will learn from you and discussions out

on this forum...=))

[ookla in reply to Hidden]

I haven't tried gabapentin with any of the dopamine agonists, they all made me throw up and/or made my RLS worse after a few days.

So, ready for a good laugh? The doctor I'm currently seeing for RLS *is* a sleep health specialist. And he's the one that was in charge of my sleep study when I was on tramadol and the follow up sleep study when I was on no medication at all. So it's all the more baffling why he'd prescribe me methadone when he was already aware that tramadol gives me sleep apnea (and stopping tramadol made it go away).

[Hidden]

Ookla..I hope so much that you get some answers..I feel so bad for you suffering

like this. I suffer too but I am seeing doctors weekly on this...we are working to change

things for me..I am refusing narcotics..I don't think that it's the answer for me..I get too

foggy and grumpy on narcotics just as I have been without sleep...I have a lot of other

things going on with me health-wise..and living the USA, I can get in almost the same

day..there are open clinics at night or in the daytime...so I don't save up what's all

going on like some in the UK do..if I could wave a magic wand ..I would wish that

you get just the same amount of doctoring over there...I wanted you to know that

I am not sitting idol on my lack of sleep.. I do know that treatment will be different for

me by 2 weeks from now..Please keep talking on this forum..you are helping others

so much by sharing what's happening..we all learn from each other.

[ookla in reply to Hidden]

I'm also in the US, but where I am is such a small community that there's long wait times to see doctors here, too.

I was horrified this evening when, while getting ready for bed, my wife pointed out the many, many, many scabs all over back, chest, and legs where I scratched my skin so much while asleep to the point of bleeding. It's a shame it was helping my legs, but those side effects are just too severe.

[Hidden in reply to ookla]

The side effects have been a pain in the rear for you..I don't honestly know what you can do more at this point... I have never heard of a person getting scabs from RLS medicine..I wouldn't like to have that going on too..I would drive at least a state away if I couldn't get in

to see the doctor that I would need...I feel just awful saying that to you but I am out of ideas until I read up some more. I won't give up finding at least something...Let me ask you something...Did you write Dr, B a letter? You can do it online..and usually he gets back to you within 36

hours..I am thinking that you should do that..Here's the website.

rlshelp.org Please look at his requirements for writing him.

He won't deal with abbreviations and mis-spellings in words..be straight to the point, tell him all that you tried, the side effects and tell

him if you tried a combo of medicines..I am so sorry that I have nothing more to offer until I read up.xxx Karen

[ookla in reply to Hidden]

The scabs aren't from the medicine. The medicine is making me itch and my skin itches so much that I'm scratching it so hard in my sleep that I'm breaking the skin.

I've written to that doctor a few times. He basically was at a loss when I was unable to handle tramadol. In his opinion, that is the most effective and most mild treatment - if I couldn't handle tramadol, he didn't think I was going to have much luck with anything else.

Since I can't remember the outcome of my time on gabapentin, I think my best bet is to give it a try again and try my best to be patient and titerate up as slow as possible this time to minimize the foggy and forgetful side effects... unless my doctor has a better idea.

[Missymaz in reply to ookla]

Hi I've been reading your posts sorry I'm not great with making replies but wanted to let you know I had bad itches to the point of getting sharp object to use for scratching cos I bite my nail to nothing. I've been under the sleep clinics for a few years hand a few studies as a result was placed on a high dose of ripinarole didn't work put gaggapentin and the dosage raised to three times daily high dosses still no joy and so go back to review again. I live in England and the national health is renowned for taking ages to do anything I have to wait two months to see the specialist again. The pain clinic say They'll wait to see what happens at the sleep clinic and visor verso and this just keeps going and drugs given that do nothing to help the condition meanwhile my limbs thrash and hurt violently every night and am extremely sleep depraved and all this Leeds to chronic Depresion. I do have other medical issues that don't help the situation. I've ranted to much what I wanted to say is weighing up the best of two evils of medication side effect and suffering the condition is a difficult call and my heart goes with you I only wish I could offer you better advise and a solution try and keep your chin up ( didn't mean to pore my heart out just didn't want you to feel alone with your struggle ) Missymaz

[Hidden]

I'm only trying to follow you on this..when i suggested gaba and mirpex, I think

that you told me that you get sick from that...so is that the gaba or the mirpex?

I dislike not talking face to face for these misunderstandings..so sorry to make you

repeat again.. When I was prescribed Gaba, I slept like a baby..I could only take them

an hour before bedtime..not in the morning the next day..we won't know how gaba works

in the daytime for you unless you are prescribed to do that...but fare warning...Gaba knocked me for a loop...I was sleeping way too hard..and long on that..=DDD,,, My problem was

severe weight gain within that month that I took it..I took the weight off but it was the hardest weight that I ever had to lose...Gaba works for so many people that weight gain would be the least of my worries..Good luck to you..Oh and btw, Gaba takes 14 nights to get the true effect of the medicine..=)

[ookla in reply to Hidden]

It was the mirapex that was making me sick. When I was taking gabapentin, I was taking it by itself, 600 mg 3 X a day. I know I felt kind of high and foggy on it, not quite like myself, and I was having trouble remembering things (especially when talking I wouldn't be able to think of a word I wanted to use). However, I don't remember if it actually helped my legs at all. And I don't remember if it made me sleepy. I was responsible for defending my company in a law suit, so I stopped taking the gabapentin so I would be able to concentrate and think on my feet in court. What dose of gabapentin were you on?

[Hidden]

I don't take it anymore...I gave it up and switched to Mirpex (pramapexole)

and I take .5 mg. I was prescribed 1mg but I took myself down on it.. there

were some negative side effects.. I was on 900 mg at bedtime only...I was

getting ready to add gabapentin to my daytime but then the doctor, nor did I

like the side effects..so that's when we made the switch to mirpex. It works

for me about an hour after taking it but Sometimes I do feel ill on it. One thing

that I was told is that you have to take both of those consistently. I couldn't stop

taking it for a day..but in your case, I understand why you felt you had to stop with

it .. I hope you won your case. =))..

[ookla in reply to Hidden]

Thank you. We did win.

[Hidden]

Hi ookla i have been looking through your past posts and questions trying to see if we can help in anyway. I have to admit, i cant see anything you havent tried that has either not worked or made you sick, or the side effects were bad for you. Now if only you lived near to Dr.B, he would i am sure help the best for you, i know if i lived in the USA and near to his clinic i would be asking for an appointment with him. But, back from dream land, you need to see a specialist and if one isnt near to you, then travelling to see one i think is your only option right now If you think the Gabapentin was helping you then try that again, start from scratch, lowest dose first. Gabapentin takes time to get into your system and work, probably a few weeks. Sometimes taking 2 medications both using low doses can work. What dosage was the Mirapex when you took that....if a high dose then that can cause for some bad side effects. There is a Mirapex Extended Release, have you taken that one, then maybe add a lower dose of Gabapentin, just throwing ideas out here. If the Mirapex made you sick, did you try a anti nausea pill with it.

[ookla in reply to Hidden]

Thank you so much for going through so much trouble on my behalf. I talked to my doctor today and he said to stop taking the methadone (which I already did, took the last dose Saturday night around 10 pm). Now I'm going back to gabapentin, see if that is tolerable (especially compared to everything else). Starting with 300 mg three times a day for 5 -7 days, then going up to 600 mg three times a day. But yeah, I came to the same conclusion as you... there's really nothing I can do. I've tried pretty much everything without any luck.

[Hidden]

Take that dose slowly, let your body and brain get used to the low dose for a while, then increase slowly, I would increase it by just one pill at a time, not the 600mg 3 times a day straight away. As i already said it takes time for that med to work, so dont expect results for a few weeks. Good luck, and we are here to talk to and listen, so keep in touch.

[ookla in reply to Hidden]

is starting with 300 mg three times a day ok? and how many days should i wait between increasing doses?

[Hidden]

ookla, i cant tell you that, that is something you will have to use your own judgement, see how you feel. I said to increase slowly to see if you can tolerate it better than last time. I am only going by my experience of taking meds that knock me side ways. I take Pramipexole, i am taking at the moment up to 3 of the .125mgs, i have to break the 3rd one into bits, as taking 3 whole ones, knocks me side ways the next day. I also take the 3, spaced out, two hrs in between them. I do it, to try to keep the side effects down the next day, sometimes it works, sometimes it doesnt and i will still get hit by side effects, or i get breakthrough RLS in the night. I have to use my own judgement, sometimes we have to "play" with our meds, to find what suits us as individuals.

[ookla in reply to Hidden]

Thanks for all your help and advice. I'll let you know how it goes.