Ann, thank you so much for your words of encouragement. I need that right now. I remember the last time I was in a similar place , and you were so kind.
While I dislike knowing that anyone has had it as bad as I'm going through right now, it does help to know that somehow they managed to get beyond that awful feeling. Only those who have been there can understand. I don't feel that I can talk to anyone except those on this board who will understand.
It is interesting how things happen though. Last night, the third night without any sleep, I was checking and found the conversations about the TENS unit. We all know how excited we get when we hear of something we haven't tried yet that might help. I do have a TENS unit and just when I was about ready to scream and throw in the towel, I had a sudden burst of energy to try that. Believe it or not, I was able to get it set up and get about an hour of sleep. Tonight I will start out as the other ladies did and maybe I will have a better night. I'm grateful to them for that. At least I'm not dreading the coming of night as much.
You are 100% correct about the doctor. My doctor is not the right one for me and this problem...I know that. Since I have definitely decided to get off the Mirapex, I do need someone else who will work with me. I guess I will have to research doctors in my area in an effort to locate one who is more knowledgeable about RLS. Would they be listed under neurologists and do they require a referral...if you know. No, I don't have excess money around, but would consider finding the right specialist a good investment for me. I need to change, if possible, the way RLS is affecting my life and everything I do; it is taking over. It seems that since I started questioning the Mirapex side effects I have gotten even worse and I have put everything on hold. But then, you would probably know about that, I'm sure.
Thanks again!
Bonnie
Mirapex and Vision/Balance Problems
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ViewsAskew
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Glad I was helpful.
We're pack animals, lol, we like knowing what others feel, experience, and how they get through things. The people on this forum are my tribe.
I spent about $600 to go to southern California to see Dr Buchfuhrer (cost of travel and the visit) It was well worth it. I didn't have the money at the time, but I managed to borrow it. I stayed with a friend.
He stayed in constant email contact with me, mailed me prescriptions, and when I finally found a doctor to help, he facilitated the transfer to her. Having the peace of mind of knowing that someone was with me throughout a trying time - priceless.
per who to choose....that's the infernal question! Sometimes it's your GP. Sometimes a sleep doctor. Sometimes a neurologist. It's more about their willingness to really learn, deeply listen, and stick with you when the going gets tough. I used to have that in a GP, but I moved and didn't have a way to get there anymore.
I've never had it with a neurologist, but others here have.
I now have it with a sleep doctor.
We're pack animals, lol, we like knowing what others feel, experience, and how they get through things. The people on this forum are my tribe.
I spent about $600 to go to southern California to see Dr Buchfuhrer (cost of travel and the visit) It was well worth it. I didn't have the money at the time, but I managed to borrow it. I stayed with a friend.
He stayed in constant email contact with me, mailed me prescriptions, and when I finally found a doctor to help, he facilitated the transfer to her. Having the peace of mind of knowing that someone was with me throughout a trying time - priceless.
per who to choose....that's the infernal question! Sometimes it's your GP. Sometimes a sleep doctor. Sometimes a neurologist. It's more about their willingness to really learn, deeply listen, and stick with you when the going gets tough. I used to have that in a GP, but I moved and didn't have a way to get there anymore.
I've never had it with a neurologist, but others here have.
I now have it with a sleep doctor.
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.
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badnights
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Here's an idea, and I don't know if it works with the current system in the States: Get your GP to refer you to both a neurologist and a sleep doctor, and see whoever can get you in first. If that one is not knowledgeable, try the other.
If you can't work things that way, try this: get referred to the neurologist, and if s/he doesn't know enough, he may refer you to a sleep specialist (mine did).
If you can't work things that way, try this: get referred to the neurologist, and if s/he doesn't know enough, he may refer you to a sleep specialist (mine did).
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Our insurance plan allows us to go to any doctor we wish, and I established myself with a neurologist when I first decided to see a doctor for RLS back in 2008. He is a very nice man and a great listener. However, he is not experienced in the treatment of RLS and admitted that to me after I had been seeing him a while and after he had prescribed a couple of medications for RLS (pretty much medications that I had read about and wondered if they worked). After the horrible experience with ReQuip, it was my GP who prescribed the Mirapex. That worked so well, I thought RLS was a thing of the past for me.
My GP is an internist who dislikes referring out. He likes to handle everything himself. I believe I would have a problem if I could find a knowledgeable doctor who required a referral from a GP. I question whether my GP would readily refer me.
I am dreading the thought of going in and telling him that I have stopped taking the Mirapex because I believe I have been having adverse symptoms because of it. Of course, in my mind, I believe I have good reason to get off the Mirapex because I have too many of the listed possible side effects. It would be hard to convince me that something else is behind the symptoms that I have and its just a coincidence that they are side effects of Mirapex, though anything is possible I suppose. I did check back, and I have been on Mirapex right at two years. My vision problems began a little over a year ago, but I assumed the problems were just coming on with age and that may well be the case. It is the sudden worsening (within the last few months) of double vision, (even when wearing the glasses prescribed for correction of this problem), difficulty focusing, and the feeling that the ground is moving under me when walking, along with a spaced out feeling that causes me to question whether it could be the Mirapex.
I believe my GP is going to be angry that I stopped taking the Mirapex without his recommendation. It won't matter if I tell him that I have researched the drug extensively and learned of the many side effects others have had, and I don't want to be on the drug any longer. Right now, I am taking a big risk if I drive because of the vision problems I am having. His comment will probably be something like, well, you have been on ReQuip and now the Mirapex and those are the indicated drugs and they are not working for you, so there is nothing else I can do. I could be wrong, but I have been his patient for many years, and I believe this will be his reaction. More than likely if I am going to get help from another doctor, I will have to locate that doctor myself. Right now, I am trying to figure out how to ask my GP to request the labs for iron, etc. Sorry to ramble so much about my doctor, just thoughts going through my head.
My GP is an internist who dislikes referring out. He likes to handle everything himself. I believe I would have a problem if I could find a knowledgeable doctor who required a referral from a GP. I question whether my GP would readily refer me.
I am dreading the thought of going in and telling him that I have stopped taking the Mirapex because I believe I have been having adverse symptoms because of it. Of course, in my mind, I believe I have good reason to get off the Mirapex because I have too many of the listed possible side effects. It would be hard to convince me that something else is behind the symptoms that I have and its just a coincidence that they are side effects of Mirapex, though anything is possible I suppose. I did check back, and I have been on Mirapex right at two years. My vision problems began a little over a year ago, but I assumed the problems were just coming on with age and that may well be the case. It is the sudden worsening (within the last few months) of double vision, (even when wearing the glasses prescribed for correction of this problem), difficulty focusing, and the feeling that the ground is moving under me when walking, along with a spaced out feeling that causes me to question whether it could be the Mirapex.
I believe my GP is going to be angry that I stopped taking the Mirapex without his recommendation. It won't matter if I tell him that I have researched the drug extensively and learned of the many side effects others have had, and I don't want to be on the drug any longer. Right now, I am taking a big risk if I drive because of the vision problems I am having. His comment will probably be something like, well, you have been on ReQuip and now the Mirapex and those are the indicated drugs and they are not working for you, so there is nothing else I can do. I could be wrong, but I have been his patient for many years, and I believe this will be his reaction. More than likely if I am going to get help from another doctor, I will have to locate that doctor myself. Right now, I am trying to figure out how to ask my GP to request the labs for iron, etc. Sorry to ramble so much about my doctor, just thoughts going through my head.
It sounds like your GP might have a bit of a God complex. I would approach him like they do the dad in My Big Fat Greek Wedding, i.e., make him think he is calling all the shots when really he's just doing what you want, heh heh.
Show him the Mayo algorithm and tell him that you want to take a break from the Mirapex to see if your other symptoms go away. Then he can decide if he wants to find another dopamine agnostic or go on to the next step in the algorithm.
Ultimately it sounds like he wants to be a miracle worker so play up how much he has helped you before and hopefully together you can find something else that works.
Meanwhile, start interviewing other doctors.
Show him the Mayo algorithm and tell him that you want to take a break from the Mirapex to see if your other symptoms go away. Then he can decide if he wants to find another dopamine agnostic or go on to the next step in the algorithm.
Ultimately it sounds like he wants to be a miracle worker so play up how much he has helped you before and hopefully together you can find something else that works.
Meanwhile, start interviewing other doctors.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
That's a brilliant suggestion, Tracy. I think your impression of my doctor is right on target. Fortunately, unlike some doctors who share his same feelings, he is very good in the treatment of most illnesses. I just don't think he is as knowledgeable in the RLS area as is necessary.
I appreciate your suggestions so much on how to discuss the Mirapex issue with him. You don't know how much I have agonized over what to say to him. Your suggestion is excellent...simple, and direct. You have taken a big worry off my mind.
Also, maybe you could help me with this...I am due to have blood work before my visit with him on 1/12/12. Any ideas on how I might ask that he
include a ferritin check? He has never requested a ferritin check.
Meantime, last night was a little bit better; thank goodness! I am completely off the Mirapex, taking only 5/500 Vicodin, which is prescribed for my back.
I appreciate your suggestions so much on how to discuss the Mirapex issue with him. You don't know how much I have agonized over what to say to him. Your suggestion is excellent...simple, and direct. You have taken a big worry off my mind.
Also, maybe you could help me with this...I am due to have blood work before my visit with him on 1/12/12. Any ideas on how I might ask that he
include a ferritin check? He has never requested a ferritin check.
Meantime, last night was a little bit better; thank goodness! I am completely off the Mirapex, taking only 5/500 Vicodin, which is prescribed for my back.
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Polar Bear
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BonnieB: You are going to discuss the Mirapex issue with your doctor - simple and direct.
Why not do the same regarding a ferritin blood test.
This is exactly what I did.
I said to my GP that research showed that WED sufferers should have a ferritin level of at least 50 and preferably nearer 100 and could I have mine checked please.
Good luck.
Why not do the same regarding a ferritin blood test.
This is exactly what I did.
I said to my GP that research showed that WED sufferers should have a ferritin level of at least 50 and preferably nearer 100 and could I have mine checked please.
Good luck.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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badnights
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Re: Mirapex and Vision/Balance Problems
BonnieB, I suggest you print for him the summary of currently used RLS/WED medications at http://www.rls.org/Document.Doc?id=2155 (there are more than the two DAs!), as well as the quotes below from some recent papers & books dealing with RLS/WED. Perhaps he will appreciate seeing the actual references for the information you're giving him:
Hening, Buchfuhrer and Lee, 2008 (Clinical Management of Restless Legs Syndrome, p.199):
"RLS patients should have their serum ferritin level determined even when their hemoglobin and serum iron levels are normal. The serum ferritin level is the most accurate and sensitive test (other than a bone marrow evaluation) to determine whether iron stores are low. Serum ferritin levels <50 ug/mL (despite lab-reported normal levels of >10-20 ug/mL) have been associated with an increased severity of RLS, and treating these patients with supplemental iron may help their RLS."
Frauscher et al., 2009. The severity range of restless legs syndrome (RLS) and augmentation in a prospective patient cohort: Association with ferritin levels. Sleep Medicine v. 10, p. 611
"There was an inverse correlation between RLS severity and ferritin levels. Patients with current
augmentation had the lowest ferritin levels. Our data further strengthen a putative role of low iron
stores as a potential aggravator of idiopathic RLS."
Augmentation on DAs:
Allen et al., 2011. Restless legs syndrome (RLS) augmentation associated with dopamine
agonist and levodopa usage in a community sample. Sleep Medicine v. 12 p. 431
"As currently used, long term dopaminergic treatment for an average ± SD of 2.7 ± 2.4 years produced significant augmentation problems in at least 20% of the patients and only 25% of the patients were totally free of this problem. It is important for physicians to carefully screen patients for changes in RLS symptoms for as long as they are on dopamine agents, with particular attention paid to those patients who present with the most severe RLS symptoms prior to treatment initiation. Given the marked increase in suffering with augmentation, a method for early detection and intervention would be an important contribution to the effective management and treatment of RLS."
Hening, Buchfuhrer and Lee, 2008 (Clinical Management of Restless Legs Syndrome, p.199):
"RLS patients should have their serum ferritin level determined even when their hemoglobin and serum iron levels are normal. The serum ferritin level is the most accurate and sensitive test (other than a bone marrow evaluation) to determine whether iron stores are low. Serum ferritin levels <50 ug/mL (despite lab-reported normal levels of >10-20 ug/mL) have been associated with an increased severity of RLS, and treating these patients with supplemental iron may help their RLS."
Frauscher et al., 2009. The severity range of restless legs syndrome (RLS) and augmentation in a prospective patient cohort: Association with ferritin levels. Sleep Medicine v. 10, p. 611
"There was an inverse correlation between RLS severity and ferritin levels. Patients with current
augmentation had the lowest ferritin levels. Our data further strengthen a putative role of low iron
stores as a potential aggravator of idiopathic RLS."
Augmentation on DAs:
Allen et al., 2011. Restless legs syndrome (RLS) augmentation associated with dopamine
agonist and levodopa usage in a community sample. Sleep Medicine v. 12 p. 431
"As currently used, long term dopaminergic treatment for an average ± SD of 2.7 ± 2.4 years produced significant augmentation problems in at least 20% of the patients and only 25% of the patients were totally free of this problem. It is important for physicians to carefully screen patients for changes in RLS symptoms for as long as they are on dopamine agents, with particular attention paid to those patients who present with the most severe RLS symptoms prior to treatment initiation. Given the marked increase in suffering with augmentation, a method for early detection and intervention would be an important contribution to the effective management and treatment of RLS."
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Re: Mirapex and Vision/Balance Problems
Hi:
I've been taking Mirapex for my severe RLD about 8 years. Since then, I was diagnosed with dry macular degeneration. It's getting worse for me also. I need a magnifying glass to read small print including all of my E-mails.
My RLS doctor said that he refused to take me off of Mirapex because he feels that my RLS would be impossible to live with or get any sleep which certainly is true. I hate to think of having macular degeneration. I'm worried that I won't be able to drive in the near future.
I don't have any suggestions I would if I were you, contact m RLS doctor and let him know about your vision problems
I've been taking Mirapex for my severe RLD about 8 years. Since then, I was diagnosed with dry macular degeneration. It's getting worse for me also. I need a magnifying glass to read small print including all of my E-mails.
My RLS doctor said that he refused to take me off of Mirapex because he feels that my RLS would be impossible to live with or get any sleep which certainly is true. I hate to think of having macular degeneration. I'm worried that I won't be able to drive in the near future.
I don't have any suggestions I would if I were you, contact m RLS doctor and let him know about your vision problems