Please help me!
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brandy
Jan, can you tell your doctor about your trip and get something to help you get through that? That seems to be what I see people telling each other about difficult times like that. Also, I recently read an article that says mental stimulation can help, but it has to be more active than reading - like crossword puzzles or logic problems. Something that totally engages your mind. Do you think there is anything to that? When is your trip? I will mark it in my calendar and hold you especially close during that time. One of my professors taught me the idea of "love beams" as a form of prayer. You just hold a person in your mind and concentrate on loving them. I will do that for you on your trip.
Hi Brandy-
Yes, we have a live chat--- when you come on to the site, you can choose "chat" instead of "discussion board"--- it's listed in the paragraph just below where you click on "discussion board".
I don't know why it's putting you as a guest--- One of the admins. will come on and clear that up for you, I'm sure.
Have a good night!
Jan
Yes, we have a live chat--- when you come on to the site, you can choose "chat" instead of "discussion board"--- it's listed in the paragraph just below where you click on "discussion board".
I don't know why it's putting you as a guest--- One of the admins. will come on and clear that up for you, I'm sure.
Have a good night!
Jan
No one is alone who had friends.
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ViewsAskew
- Moderator
- Posts: 16580
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Well, you guys were all busy today! I was unfortunately busy at work and am just now getting a chance to check in.
Brandy, stopping Requip cold turkey without a doctor to help you could be tough. I mean really tough. I'd be a "bad" moderator if I told you to do it without medical help. However, some of us do make our own decisions when medical help doesn't seem to be all that helpful for us. You'll have to weigh that one and see what you think.
If you stop the Requip without anything to help you, in about two to three weeks, your RLS should be back down to the level it is now at. It might be the same as when you started taking meds, or it might be more. The sooner you stop the Requip, the better your chances of not permanently increasing it. That doesn't mean days, but more like weeks. You don't want to stay on it for months after augmentation, or it could permanently worsen.
You can stop the Requip without any other meds. It will be very hard. But, it can be done. Nadia, one of our "down under" members, did this a while back. She stopped several meds all at the same time. You have to have a lot of inner strength and resolve. A strong faith in your higher power should help you do that.
That will stop the augmentation and should stop the daytime symptoms and hopefully it will leave your arms. It won't, though, help the PLMD or nighttime RLS. You can try the Klonopin for that (it is a benzodiazepine). It may help. It tends to dull the effect of the movements (though you will still have the PLMs) so they don't keep arousing you. It also may cause you to be drowsy/foggy the next day. It may get better over time, it may not.
Only two things are really known to work for the PLMs - opioids or DAs. Since the REquip worked for several years, maybe stopping it for a few weeks is all you need to get another several years. Then try Mirapex. You take lots less of it and it lasts longer at night, so you need to take fewer doses.
You have one other option. Call your doc and explain that you've done a lot of research, think this is augmentation, and need to switch meds ASAP to keep your sanity before you can see your new doc. If you can switch to Mirapex, it may resolve your problem. If you have a good relationship, he or she may accept print outs of articles that are here. You can also write to Dr Buchfurer as www.rlshelp.org. Explain your situation and he will most likely write you back saying what he would recommend. I'm guessing he'll either recommend immediately switching to Mirapex or an opioid. You can take a print out of his letter to your doctor. That's what I did and my doctor listened. Hazel did that too, and her doctor called up Dr B to work out a treatment plan. This may give you help long before your appointment.
Lynne mentioned the RLS algorithm. Print it out, read it, and take it to your doctor. It really explains what to do in these situations. It offers more alternatives in your situation: benzos, anti-seizure, other DAs, or opioids. The real problem is that there are possibly 30 things that might work. None of the drugs work for everyone. BUT, in my opinion, the best choices are a new DA or opioids because they work for the most people, most of the time.
I can't remember if anyone recommended this yet, but the New to RLS section has two GREAT sticky notes. The first one has so many links to articles and research studies about managing RLS. These are great to take to your doc after you learn more.
Oh, and last, don't forget Jill's RLS Rebel site. She has a book that might help a lot. It's about using techniques to help you when you don't have meds or don't want to use them. She uses lots of great ideas on how to keep your brain occupied so that the RLS is kept at bay. You are absoluetly right that mental activity can help a lot.
Hope you get some sleep tonight.
Brandy, stopping Requip cold turkey without a doctor to help you could be tough. I mean really tough. I'd be a "bad" moderator if I told you to do it without medical help. However, some of us do make our own decisions when medical help doesn't seem to be all that helpful for us. You'll have to weigh that one and see what you think.
If you stop the Requip without anything to help you, in about two to three weeks, your RLS should be back down to the level it is now at. It might be the same as when you started taking meds, or it might be more. The sooner you stop the Requip, the better your chances of not permanently increasing it. That doesn't mean days, but more like weeks. You don't want to stay on it for months after augmentation, or it could permanently worsen.
You can stop the Requip without any other meds. It will be very hard. But, it can be done. Nadia, one of our "down under" members, did this a while back. She stopped several meds all at the same time. You have to have a lot of inner strength and resolve. A strong faith in your higher power should help you do that.
That will stop the augmentation and should stop the daytime symptoms and hopefully it will leave your arms. It won't, though, help the PLMD or nighttime RLS. You can try the Klonopin for that (it is a benzodiazepine). It may help. It tends to dull the effect of the movements (though you will still have the PLMs) so they don't keep arousing you. It also may cause you to be drowsy/foggy the next day. It may get better over time, it may not.
Only two things are really known to work for the PLMs - opioids or DAs. Since the REquip worked for several years, maybe stopping it for a few weeks is all you need to get another several years. Then try Mirapex. You take lots less of it and it lasts longer at night, so you need to take fewer doses.
You have one other option. Call your doc and explain that you've done a lot of research, think this is augmentation, and need to switch meds ASAP to keep your sanity before you can see your new doc. If you can switch to Mirapex, it may resolve your problem. If you have a good relationship, he or she may accept print outs of articles that are here. You can also write to Dr Buchfurer as www.rlshelp.org. Explain your situation and he will most likely write you back saying what he would recommend. I'm guessing he'll either recommend immediately switching to Mirapex or an opioid. You can take a print out of his letter to your doctor. That's what I did and my doctor listened. Hazel did that too, and her doctor called up Dr B to work out a treatment plan. This may give you help long before your appointment.
Lynne mentioned the RLS algorithm. Print it out, read it, and take it to your doctor. It really explains what to do in these situations. It offers more alternatives in your situation: benzos, anti-seizure, other DAs, or opioids. The real problem is that there are possibly 30 things that might work. None of the drugs work for everyone. BUT, in my opinion, the best choices are a new DA or opioids because they work for the most people, most of the time.
I can't remember if anyone recommended this yet, but the New to RLS section has two GREAT sticky notes. The first one has so many links to articles and research studies about managing RLS. These are great to take to your doc after you learn more.
Oh, and last, don't forget Jill's RLS Rebel site. She has a book that might help a lot. It's about using techniques to help you when you don't have meds or don't want to use them. She uses lots of great ideas on how to keep your brain occupied so that the RLS is kept at bay. You are absoluetly right that mental activity can help a lot.
Hope you get some sleep tonight.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
doctor
brandy wrote:How do you get your doctor to prescribe and opiod if s/he does not know about the disorder? I'm afraid of being seen as a drug seeker.
My regular Dr. didn't know anything about RLS either, but she referred me to an orthopedic Dr., who checked me for pinched nerves and such and when he couldn't find anything he referred me to a neurologist who diagnosed me with RLS. I don't know if you have insurance and if you have to have referrals if you do, but have your Dr. refer you to a neurologist. Most neurologist are very aware of RLS and mine has helped me a great deal, before I started going to him I was like you and wondering whether or not my sanity would hold on long enough for some Dr. to help me. Hang in there.
P.S. If you can print off info on RLS from the computer, print it off and give it to your Dr. I did.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Thanks for all of the advice. I will follow your suggestions, especially the one about printing things to take to my doctor. The doctor I am seeing July 10th is one I found on this website. Does that mean he has a better chance of knowing what he's doing? I will also check out the book that was mentioned. I am still quite depressed and last night (or should I say this morning) in desperation I took 2 mg Klonopin, 600 mg gabapentin (given to me for a finger injury about a month ago) and two over-the-counter sleeping pills. I actually slept, but I know that was not a healthy choice. I just felt like I didn't know what else to do. I leave tomorrow for my conference. It will be a six hour car ride with another person and then several days of going nonstop. I feel afraid of not being able to do all I need to do at this conference. Also, because I'm so tired and depressed, I feel like I could cry at the drop of a hat. I'm afraid of bawling my eyes out in the middle of talking to someone who could be important in my career, because I know I will be even more exhausted by the time the conference is in full swing. I feel so bad talking about all of this. I feel like a whiner. I don't want everyone to think I am. It just seems to help to talk about it and you all seem to understand. What can I do to help someone else?
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Brandy
Brandy my dr prescribed me .5mgs of klonopin along with my pain med and my sinemet. So if you are having trouble sleeping don't feel bad about taking it. I am so sorry you have that long drive, sitting is the worst thing for RLS. I just had a 2 day trip to texas, but i had my meds. i was taking 4 over the counter pian meds at a time before i got to see a dr for a prescript. Good luck.
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Brandy said:
Jan, can you tell your doctor about your trip and get something to help you get through that? That seems to be what I see people telling each other about difficult times like that. Also, I recently read an article that says mental stimulation can help, but it has to be more active than reading - like crossword puzzles or logic problems. Something that totally engages your mind. Do you think there is anything to that? When is your trip? I will mark it in my calendar and hold you especially close during that time. One of my professors taught me the idea of "love beams" as a form of prayer. You just hold a person in your mind and concentrate on loving them. I will do that for you on your trip.
I am so sorry, Brandy. I completely missed this!!! We're leaving July 20---coming back on the 28th. I'll have things to keep me occupied. Your ideas are really good and I appreciate any good thoughts you can send my way. I will do the very same thing for you!
I do think trying to occupy your mind helps with RLS. Of course, it's not "in your mind"... but, I do things (or try to) when I have RLs really bad and sometimes it helps a little bit.
See, you're already helping other people, Brandy.
Sure hope you get some sleep tonight!!!!
Hugs
Jan
Jan, can you tell your doctor about your trip and get something to help you get through that? That seems to be what I see people telling each other about difficult times like that. Also, I recently read an article that says mental stimulation can help, but it has to be more active than reading - like crossword puzzles or logic problems. Something that totally engages your mind. Do you think there is anything to that? When is your trip? I will mark it in my calendar and hold you especially close during that time. One of my professors taught me the idea of "love beams" as a form of prayer. You just hold a person in your mind and concentrate on loving them. I will do that for you on your trip.
I am so sorry, Brandy. I completely missed this!!! We're leaving July 20---coming back on the 28th. I'll have things to keep me occupied. Your ideas are really good and I appreciate any good thoughts you can send my way. I will do the very same thing for you!
I do think trying to occupy your mind helps with RLS. Of course, it's not "in your mind"... but, I do things (or try to) when I have RLs really bad and sometimes it helps a little bit.
See, you're already helping other people, Brandy.
Sure hope you get some sleep tonight!!!!
Hugs
Jan
No one is alone who had friends.
Am at my conference and am having a very hard time. I have the opportunity to participate in an HIV/AIDS Summit, and had to leave during part of it because my legs were bothering me so bad and people were lined up along the back wall, so I couldn't just walk around in the back. I will return shortly and try to sit through another session. HIV/AIDS is a very important issue to me and my ultimate goal is to get a Ph.D in this area and work with AIDS in Africa. I don't want to miss out on this opportunity because of stupid RLS! Feeling quite discouraged and so very sad.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Brandy ask the front desk of the hotel to go find you an excercise rubber band, you know the large ones. You may look silly, but you can sit and stretch while listening. In the mean time, use a pair of socks or a pair of hose. Sit and stretch. And if anyone thinks your crazy just explain that you have a neuorlogical condtion that makes it next to impossible to sit still. And keep on stretching. Oh, yeah, smile too!
Hang in there your doing fine.
We're still here and the moon will be there for you tonight as well.
We'll all be under it with you.
Lynne
Hang in there your doing fine.
We're still here and the moon will be there for you tonight as well.
We'll all be under it with you.
Lynne
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ViewsAskew
- Moderator
- Posts: 16580
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I'll add a suggestion to Lynne's: change your clothes. Restricting clothing can make it worse for some of us. If I had to sit in pantyhose during a conference, I'd cry. On the other hand, many people LIKE the restriction and wear support or medical hosiery. It's worth trying one and then the other to see which works better.
Did you get to the RLS Rebel's site? Until you can get her book, go to www.rlsrebel.com. She has some great ideas. Some of them must might get you through this.
Did you get to the RLS Rebel's site? Until you can get her book, go to www.rlsrebel.com. She has some great ideas. Some of them must might get you through this.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Was able to go to a banquet tonight. Was able to sit at the table for dinner, but had to get up and stand (and stretch and jump and rock) for the keynote speaker. Luckily, I was behind everyone, so no one saw me, except of course for the speaker. Who knows what he thought. Actually, he was really boring, so I was glad for an excuse to entertain myself by doing the RLS tango. I think the front desk has a stretch band that you can check out and I am going to do that tomorrow. I never would have thought of that. Brilliant! I was looking elsewhere and was wondering your opinions on a couple of things. Some people seem to think coffee relieves symptoms and others seem to think it worsens them. What do you think? Also, does anybody know anything about gabapentin as a treatment? Love to you all!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer