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Help!!!! I'm so miserable

Posted: Fri Aug 27, 2010 12:29 am
by Betty/WV
To say the least, I've been suffering all day. My RLS is pretty much controlled with Mirapex and Tramadol, also clonazapam. But I don't know what happened I've been in the throes of RLS, really bad, all day. It seemed to start when I would sit down. And as the day went on it got worse. I've taken my meds when I should. I've noticed this happening little by little for a few days and now today its BAD. I hope this isn't augmentation. I went shopping for groceries and no problems then cause I was walking around the store. There have been times when I have had break throughs of the RLS. I hope this is just one of those times.

What do I do now.? What do I look for?

This reminds me of what I suffered with for years. And I don't think I can deal with it again. I don't know how I surviived all those years. No quality of life.

Help if you can.


Posted: Fri Aug 27, 2010 2:35 am
by SquirmingSusan
Sorry you're having such a bad day, Betty. And hopefully that's just what it is - a bad day, not the beginning of worsening RLS.

Can you think of anything you did today that was different from usual? Did you eat anything that you don't usually eat, drink anything that you don't usually drink?

Can you take more of any of your meds until things settle down? If not, you may want to get in and see your doctor and make a plan for these bad days. Also, check out Jill Gunzel's RLS Rebel website (you can find it on Google). She has lots and lots of suggestions for how to cope with RLS besides medication. There might be some that help you through this.

Hang in there and try to relax. Things will likely settle down soon. And if they don't, you'll get in to the doctor and may need to change medications, but you'll get the RLS beaten down soon. I know it's never soon enough when it's bad though.

Posted: Fri Aug 27, 2010 4:00 am
by Betty/WV
thanks Susan for your encouraging words. I have already taken my meds plus Tylenol artheritis. So I can't take a vicodin right now, maybe in a couple hours. I could probably take another tramado.

When this happens, it is such a reminder as to what RLS was like for me for so many years. Unbearable. But in 2002 when I had a heart attack, I feel it w as because of the RLS.

It seemed as if this was building u p. I would feel it for short periods through out the days.

I'm going to try to sleep again.

Thanks again.


Posted: Fri Aug 27, 2010 4:09 am
by ViewsAskew
Betty, so sorry it's so miserable.

I hope it's better by now. I do get odd periods where it's suddenly worse and then it gets better - a few days, a week maybe. Let's just hope that is what it is.

Posted: Fri Aug 27, 2010 7:55 am
by Polar Bear
Betty: As I write this I hope that you are fast asleep.

When symptoms go hyper for no seemingly obvious reason it is difficult to understand.

My rls is 24/7 but as would be usual worse evenings/night. Three nights ago, for no reason? that I know of, and despite being medicated, symptoms hit me like a truck.... legs and arms. That happened for 2 nights, then last night was fine.

Hopefully what is happening is temporary and has already passed.

Posted: Fri Aug 27, 2010 11:36 pm
by waterloo2
Hi Betty
Hope you are feeling better by now.
Is the Tramadol for the pain.
I find the co codomol helps it seems to calm the legs somehow.
gill x :wink:

Posted: Sat Aug 28, 2010 7:39 am
by badnights
Betty, dear, I hope you're doing fine. These past few days are hopefully just a phase. But if tomorrow is just as bad, write down when it started and make an appointment to see your doctor.

You know all the augmentation criteria as well as anyone else; write down whether and how your symptoms comply with each of the criteris on p. 151 of the Hening, Buchfuhrer and Lee book. (I think you have that one?) That will help clarify if you're augmenting. If you are, the answer is simple: you will have to replace the Mirapex with something else. If you aren't, you may need to add/up the daytime dose of Tramadol. Is your doc knowledgeable about options?

Posted: Sat Aug 28, 2010 7:11 pm
by Betty/WV
Bethf: No my doctor isn't very knowledgable about RLS. I was hoping he would at least work with me. I have given him the Mayo Algorythm and an article on augmentation, which he knew nothing about. I ask him if the Mirapex stopped working etc., what would he do and he said he would put me on sinament. And everything I have read about sinement is bad news. I don't think he likes to give opiods. I ask him for Vicodin for emergency times and he was so generous to give me 15. I think the tramadol helps some.

Have to go now, Keep in touch. And thanks for caring.


Posted: Sun Aug 29, 2010 2:58 am
by badnights
Probably more people care than you realize.

Well, the tramadol is something. Maybe you can get by on Tramadol without Mirapex? I can't remember if I've seen that you tried ropinirole/Requip? As for Sinemet, let him know your concerns but be willing to try it on the condition that he make himself available for you to change it quickly if it doesn't work out. Make sure he agrees to be available before you agree to take it.

When my neuro first saw me and changed my meds, I asked him how I would get hold of him if things didn't work out, and he said to go through my family doc. I questioned him again, wondering if that would be fast enough and he assured me it would. By the next morning I knew I was in trouble with the meds he gave (or lack thereof) but my GP couldn't get hold of him for almost 4 weeks. He felt really bad about that, and I now have his office number and when I call he gets back to me the same day.

But all this talk is for nothinng if you are not augmenting. Since your doc isn't familiar with augmentation, it would be best if you yourself came to a conviction one way or the other. Do you have the Hening et al book? I will happily copy the augmentation criteria if you don't.

Posted: Sun Aug 29, 2010 3:34 am
by Betty/WV
No bethf i don't have that book. I'm still in misery. It is 11:30 p m and no relief in sight. I just took a vicodin. I'm deseperate, I can't do this anymore. I'm so tired all day and in complete misery all night. And I have been having trouble driving. I almost fell asleep twice while driving, once I almost hit the median strip and another time I went over into the other lane. Thank goodness nothing happened except it scared me to death. I guess Monday I should call my doctor. Now I'm afraid to drive.
I didn't think I would spend my last years this way.

T hanks for caring.


Posted: Sun Aug 29, 2010 4:17 am
by ViewsAskew
Betty, so sorry that it hasn't stopped. You shouldn't have to live like this at all.

If I may....have you written to Dr B? I know not all doctors will listen to him, but my GP did several years ago when I was in a similar situation. I took in my letters from Dr B that suggested what we should try. He listened and he did it.

It may not work, but it's worth a try, I'd think.

Posted: Sun Aug 29, 2010 4:28 am
by Betty/WV
Thanks Ann: Right now I can't think straight so I appreciiate some one helping me think what to do. I'll try it. I hope I can think straight enough to explain to him whats happening. Thanks again. BETTY/WV

Posted: Sun Aug 29, 2010 7:34 am
by Polar Bear
It is a good idea to write to Dr B.
My GP is one of those willing to listen to Dr B.

Posted: Mon Aug 30, 2010 3:31 am
by badnights
Well because I said I'd do it, here are the Max Planck Institute diagnostic criteria for augmentation (slightly simplified), but I think it's too complicated and confusing for the state you're in right now. You really must make that call on Monday to set up an appointment.

Emailing Dr. B is excellent advice, and you know you can do that at any time, so he will probably have a response for you before you see your doc. Look back over your thread here to help you remember what to write. Good luck!!!!!!!!!!!!

For you to be augmenting, all of the following must be true:
- you have had an increase in symptom severity on 5 out of 7 days the previous week
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment

Also, either B or C has to be true:
persisting paradoxical response to treatment: RLS symptom severity increases some time after a dose increase and improves some time afer a dose decrease
earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours OR and earlier onset by 2-4 hours accompanied by one of the following
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment

Posted: Mon Aug 30, 2010 4:09 am
by Betty/WV
Viewsaskew, bethf, Polar Bear: Thanks so much for your replys. Tonight I'm feeling alittle better. I hope what I was going through was just a phase. I did write Dr. B. But I don't know that his reply helped much. Basically what he said was that I could increase the Mirapex but that might increase the chances of augmentation if I don't already have it and it saounds as if I do. Or going on a more potent opioid like methadone or oxycodone but m y neuro doesn't have a lot of experience with RLS And Sinement can't be used on a daily bisis for RLS will cause a marked argmentation in most patients. Lyrica is another choice along with current meds but it along with the Klonopin I take is contributing to my daytime sleepiness. I could take Ambien or Lunestas. And he recommended his two books, (which I have).
So I still feel like I'm in the dark. I took Ambien once and I did alot of sleep walking and ate half an ice cream cake without knowing I did it. I thought my husband did it. So I feel like I'm back to square one. But maybe it will be better tonight.
But it really is comforting to have people who really care and try to do everything they can do to help. No one else understands and I never laid eyes on you all and yet I get the feeling you really care and want to help me. Thanks so much. I'll let you know how I do tonight. And I will call my neuro tomorrow even though I am afraid it won't help much. I even fear what ever advice he gives my make matters worse.