death is the answer?

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

I just love this place.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

I have Dr B's book, there are little pieces of paper sticking out of it marking certain pages, it is marked with asterisks * all over the place, highlighted in spots. The book and the Mayo Clinic Algorithm are such important pieces of information.

I have an ordinary manilla folder, in it is a copy of the Algorithm, a copy of the medical alert card, and a copy of RLS and Surgery. (all on the Southern California Site) This folder is in a box underneath the bed and I have told my husband if I ever unexpectedly ever had to go into hospital he is to ensure that this folder accompanies me and is given to the doctor.

Dr B's books give lots of information, and the Algorithm I have taken to my doc many times.
But most of all the books give us hope.

As Betty says, never ever fear coming to this board and saying what you feel.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Post by badnights »

I have both of Dr. B's books, and every other book I think that has ever been printed on RLS, and some on sleep and movement disorders. I have too much information. I am scared when I see a physician that I have knowledge he should have, without the understanding of how to apply it that he would have... Still, it helps to read again the chapter on physicians, and the parts about coping.

The neuro guy wanted to put me on levodopa and I was horrified, and pointed out that, depending on the study, 30-80% of people develop augmentation on it (been there and don't want to go back) - but he pointed out that I might be in the other percentage (in his experience 25% of people don't augment on it). I felt foolish when I thought about that - maybe I would be fine with it. Maybe this was a case where thinking I knew something wasn't actually very helpful.

But he ended up prescribing the Percocet anyway, I think he changed his mind after I told him that I was unable to do my job (I've recently been told that if I cannot perform I will have to take extended sick leave and hope for disability insurance). But maybe it was after looking at my medication history some more.

I am going to post again when I know what's happening with me. Is it ok if I try to keep in touch? just so I don't feel like a stranger the next time I'm in dire need? Susan you made me cry too, I so feel for you. We are still a part of the human race, tho, aren't we? You are helping me here and there's nothing more human than helping people, is there? Even though I feel bitter that I've lost so much of myself that I'll never get back, I have to realize (bitterly) that this RLS is part of me too. Part that I have to acknowledge. The other me, without these problems, was just RLS waiting to happen. Too bad I wasted her.
I'm getting morbid again. I have to think that there might be a better me inside the RLS somewhere. There, end on a positive note. XO

Polar Bear
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Post by Polar Bear »

You are right - I wouldn't have wanted the Levadopa either.

"""[i]I am going to post again when I know what's happening with me. Is it ok if I try to keep in touch? just so I don't feel like a stranger the next time I'm in dire need[/i]? """

Of course it is ok to keep in touch. And you don't have to be in dire need.
And don't forget our other sections. ie Non-RLS
Sometimes we make a wee post just about everyday things that are happening in our lives.... ....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

dogeyed
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Post by dogeyed »

Beth,
I am so relieved you were able to get some meds to help you, and that you have slept well for a few nights, and that you've now got the tools and will to move forward. God bless you, child.
GG
"It's not how old you are; it's how awful you feel."

SquirmingSusan
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Post by SquirmingSusan »

Thanks Beth. I like what you said about RLS is a part of the whole of who we are. And it doesn't have to make us any less whole or take away from us in any way. And yeah, youth really is wasted on the young.

I've come to align my thinking to the belief that we are "spiritual beings having a human experience" and that we are here to learn. Lessons vary from person to person, but it sure does seem like some of us are enrolled in endless graduate studies while others only have to make it through kindergarten and spend the rest of their lives in recess. 8) Ah, well. Having a sense of a bigger picture to it all helps me stay involved in my life.

I'm glad to hear that you've already become very educated on RLS. It's a bit of a trick to find a doctor who knows more than you do, or to educate a doctor on the subject. Sometimes I feel like I have to get the equivalent of a medical school education in order to get my various ailments treated. Hopefully we'll all get to quit that part-time doctor job that we do and get to go back to our own interests.

Your on the road to getting better, and you will get there. Please do continue to let us know how things are going. We're all good with happy things, sad things, boring things, whatever.
Susan

Neco
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Post by Neco »

I wanted to get involved in this thread, but I simply couldn't for some reason.. However I am glad to hear you got some Percocet.

Also. Don't ever be afraid of your knowledge. Not in the context of potential harm, or unwanted side effects you don't want to experience.

You were absolutely correct to protest Levodopa. I have been on it myself, and augmented badly each time. (30 pills in less than a week just to keep it bearable).

Hopefully the opiates will help you, and remain consistent. A lot of us here are either on opiates, or some combination of opiates and another medication, as we represent the worst of the afflicted.

Quite the contrary though, you shouldn't worry about having knowledge and not knowing how to apply it. In our case it is usually the doctor's who lack the knowledge, and even when they get some, they still don't know how to apply it properly in a lot of cases. On top of that, that get offended more often than not when we even hint at knowing more than they do, or outright make them look foolish by correcting them about something they truly should already know..

That is the only area where you need to treat softly. However simple word play and feigning a little ignorance is not a bad idea, if you suspect it will get you a better response. Sometimes its all in how you phrase your question, or discuss a medication and its effects.

badnights
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Post by badnights »

I understand totally what you say about feigning ignorance, and phrasing questions in a - - a respectful way. I have trouble with feeling them out to find out how much experience they have; this neuro was the first I had to try that with and I didn't figure out soon enough that he actually had some experience. Anyway I don't think he hates me.

It's not that I got hold of some Percocet- that's what he prescribed for me. But he told me only one pill per day; so I didn't want, under any circumstances, to go over, and one pill was like NOTHING sorry I'm talking in captials again.
There was a post from a while back that I just read, by mykalsunrise, who said coming off ropinirole was like being a fish on hot concrete, that;s what I was like only I was coming off gabapentin, and I've never heard on this board or anywhere - not that I look much - about worsened RLS from gabapentin discontinuation.
So I thought it was just how bad my RLS had gotten in the past year. I'm still not sure. Thing is, I couldn't stand it and I wouldn't take 2 Percocet - I swear I would have needed 4 or 6 to do anything useful - and so I was going F.KING INSANE until I remembered I had a leftover refill for pramipexole (Mirapex).

It's the Mirapex that;s keeping me alive, but it turns me into a zombie. I've broken my rule about taking only one Percocet, I've taken 2 with 0.25 Mirpex a couple nights, I've used up all my codeine in combo with the Mirpaex, and sometimes I take 0.5 Mirapex without opiods. Even then I don't sleep well, but at least I sleep a bit, but I'm a useless zombie the next day. So I'm not happy. And my PCP didn't contact me so I have to live like this til Monday now. I can't play hockey, I can't think, I'm useless. But I'm still alive and trying to stay that way no matter how much it rips me apart inside.

I have been very lucky with doctors compared to a lot of people, no one's gotten offended with me yet. Well, my primary care physician did but that was a misunderstanding - funny actually - I sent her a letter, I dropped it off at the clinic a week or two before my appt, so she could have time to think about it, because I had been having trouble telling her how badly I was in need of help with the RLS. I think I'm saying things clearly but apparently I'm not.
You have to think before-hand of a succinct phrase and deliver into listening ears clearly and with emphasis. I'm much better at writing than talking.
I tried time and again to tell her - I even said "Can I at least tell you what it's like?" (meaning the RLS) and she said I should save it for the specialist she was trying to get me in to see, so I wouldn't have to say it twice! That makes sense, so I guess the fault was mine - it didn't dawn on me to say "I'm desperate, I'm about to lose my job, my life is falling apart". Apparently, that would have worked. As it was, the letter (in which I said basically that) made her feel that I was criticizing her, and she had all that time to stew over it without, as she put it, me being there to defend myself. Thank goodness she's reasonable and sweet and caring and we cleared it all up.

I guess this discussion board really is unusual for the knowledge its posters seem to have. Although I've cruised some others, I've never been attracted to stay on them.

SquirmingSusan
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Post by SquirmingSusan »

Sometimes I think the most difficult thing to convey to a doctor is the extent to which we are suffering. I know my own way of putting on a happy face and joking with people, even when I'm in agony and really want to be crying or screaming in pain. I'm from stoic midwestern blood, I guess. Maybe it would help to let loose a bit emotionally to help them get a better understanding of what's going on. But I don't want to be so dramatic that they'll shoot me full of thorazine or something else that makes the RLS go nuts.

And I figure that most doctors are seeing patients all day long who are whining about minor issues. It's got to be hard to tell who is really hurting and in need or urgent treatment, and who will be fine. So I think that we need to somehow be assertive in getting treatment, there, that day because it can't wait. We can tell them what's going on and ask them if they can give us what we need right now, or could they refer me to someone else who can see me today who will be able to give me the treatment I need...

I'm typing this post-ambien, and the words are moving around on the screen in strange ways. I'd better go to bed. 8)
Susan

doety
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Post by doety »

Hi Beth: So glad you're on this forum. Almost all of us understand the horror you've been/are going through. There is hope; I know we were all glad to see some relief poking through.

May I say that you're such a good writer?? Steven King! Edgar Allen Poe!

Couple of things: I've never heard of anyone having trouble with gabapentin -- except me. I tried it weeks ago. I'd take it at the lowest dose and get dizzy, start vomiting. What that points out is that EACH ONE OF US is different and we learn to dance with this. Also: you said levadopa (I assume Sinemet?) I would run like hell away from that. Sure there's a chance you won't get rebound, but a much bigger chance you will. I think it's awful (but like I said -- that's me).

I've learned so much from this board. One is that often, the lowest dose of a medication is usually the best. I don't mean so you won't get "hooked." I mean, it actually works better. That's true with Mirapex and many others. I was able to take .125 of Mirapex for two years before it augmented. I learned I couldn't take Vicodin, when after a hip replacement I was taking it and literally walking around on a walker all night long.

I feel like I've been educating docs for 15 years. For most of that, I would walk into the office with research I had done, to leave for them. There's a lot more education on it now. I insulted my newest doc (who I've come to love) -- neither of us knew how much the other was aware of about RLS. I finally said: do you know ANYTHING about RLS? and started crying. He took a breath, said gently that he had some experience with it. We went from there and you won't believe this, but I got 8 hours of sleep last night (see sleep apnea, under the pharmaceutical section). I can't tell you the list of remedies I've tried, but you just keep trying and trying.

However. It was a little more than a year ago when I thought I would kill myself by jumping off the next door building or just swallowing this huge collection of random pills I had. My husband took all those away, took me to the emergency room, etc. For a week or two, I barely slept at all until I would collapse on the floor, after crawling around because I couldn't walk anymore. It's a terrible, black place with no where to go, nobody who understands -- and certainly nobody doing anything when you need it. This board was a lifesaver to me; all the love and care and a large reservoir of wisdom and experience. I'm hoping you're connected to someone by now who can help you. Please let us know.

Betty/WV
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Post by Betty/WV »

doety and runkrun: Reading your posts just now. Like someone (forget who) said on a post not long ago. "I LOVE THIS PLACE".

In my 30 or 40 years of RLS and no one understanding the "deep dark hole" I was in, When I found this site, I couldn't believe it. Where did all these kind, compassionate people come from?

"I LOVE THIS PLACE".

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

dogeyed
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Post by dogeyed »

Dear Beth,
I hesitated to post something to you, since you are in the midst of change mode with your medicines, but I thought of something that may help. I hear you about the meds you're taking just plain not doing the trick. Apparently the dose is simply not enough. So, since you need more than was prescribed, and since you don't have a second opiate on board becuz of the mix-ups with the docs, MAYBE you could look at this idea:

I'm thinking about the over-the-counter Tylenol-Codeine #1 you have in Canada. Well, I take Tylenol-Codeine #3, I started out with two of those pills per day, stayed on that dose for several years. I'd take a half in the morning, a whole one around lunch, and the other half at dinner. Now, you say the kind they have in Canada have caffeine in them, soooooo, if you take your last dose mid-afternoon or maybe dinner, they might not keep you awake. Of course, if you get the jitters or RLS gets worse, just forget the idea.

Since I took six times per day of what you get over-the-counter, get you a couple bottles of those things, and take six of them per day. But not all at once, and break down the Percocet, too (if you have tablets, you can break them in in half). Do like I did, and try some version of this: After breakfast take two Tylenol-Codeine #1 and a half Percocet. At lunch, take three Tyl#1 and no Percocet. Then mid-afternoon or dinner, take one Tyl#1 and the rest of the Percocet. Those meds work best right after you eat. And remember at bedtime, pull on some knee-high support stockings to keep the legs calm when you lay down, and you should go to sleep despite the amount of caffeine you had for the day, since you will have taken most of it before the afternoon. And keep in mind that it might take a few days to get into a rhythm of medicine to finally really get some sleep... but the legs should get better right away (I hope).

That should tide you over until you can eventually get the right stuff and the right dose of some meds. I'm kinda thinking you need to be on methadone or at least a much more powerful opiate than the docs are giving you. They HATE passing out too much of any of that stuff, they worry about addiction and "the war against drugs." And while there is that risk, as long as you stick to a particular schedule, you can make it for months and months without having to increase it. The trick is getting the right dose of SOMEthing that DOES help you. Which is one of the reasons I suggest you get the meds over-the-counter to add to your Percocet, and thru trial and error, YOU'll know what is the right amount by the relief you get. If you decide to give my idea a shot, which is entirely up to you, then let us know how it does.

One more thing, you gotta take a tremendous amount of Tylenol before you'll damage the liver. The FDA in the U.S. has it at 4,000 mg per day. That's a lot of pills, and with Canada's #1, which has 325 mg in it, you'd have to take around ten of those, and I'm suggesting you take six. Also, on the caffeine problem, an average cup of coffee has minimum 50 mg of caffeine, but the Canada stuff only has 15 mg of caffeine in it, so if you took six, that would be about one coffee. But I don't want to persuade you one way or the other, it's all just an idea I had.
GG
"It's not how old you are; it's how awful you feel."

badnights
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Post by badnights »

So it's OK to mix oxycodone and codeine? I wasn't sure.

You won't believe the wonderful sleep I had last night on 0.25 Mira and one Pct (and a zopiclone which is like Ambien) : six whole hours without any interuption; real sleep! I think it really must have been withdrawal the last week and a bit. Too bad the Mirapex makes me so sluggish, I feel absolutely great otherwise (but don't scratch the surface too deeply, I was already crying over nothing this morning!)!

Doety I read your methadone/apnea post while I was feeling awful, and I wanted to reach out to you, but all I would have done at that point was make you feel worse I'm sure! I'm so glad you're sleeping well now! I hope it stays that way forever.

Neco
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Post by Neco »

Yes, you can technically mix Percocet (Oxycodone) and Codeine. However, as a general rule of thumb, you should not mix opiates if you can avoid it.

I forgot to mention to you about the OTC codeine, but it is a good option to supplement your Percocet dose. Codeine is just a weaker opiate, and you are at a relatively low dose of the Percocet with only 1 or 2 pills a day.

So yeah you can get away with that, as you are pretty tolerant to the effects of opiates in general. The thing is to NOT go overboard.

You must also mind the acetaminophen (paracetamol up North?) content in those OTC Tylenol #1's.

You can end up destroying your liver if you chronically take 2 - 4 grams worth of Tylenol per day. Although some come out unscathed, it depends on your general liver health and your age. At the peak of my Vocidin addiction I would routinely go past 7 or 8 grams of Tylenol per day, and I am lucky I don't appear to have any permanent damage from it.

OTC Codeine is a completely ethical and appropriate, legal way to supplement your Percocet prescription. So don't feel bad about it, just be careful is all. And be very careful who you mention your taking it too. Especially any Doctors, unless you can absolutely trust them and can predict their reaction as favorable. The last thing an RLS patient being treated with opiates needs, is to be flagged a potential, or outright labeled as an addict.

Polar Bear
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Post by Polar Bear »

Beth, I used to take Ambien and now take zopiclone. My understanding is that Ambien is short acting, and zopiclone is longer acting.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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