Jumpyowl my cocktail right now is Mirapex now the doasage is confuseing because they gave me 1mg tabs through the assistance program this is what I am doing...breaking the 1mg tab in half and I take 1/2 3x daily
mirapex
ultram 2 50mgs 4x daily
zanax 1mg at bedtime
I stopped smoking as my new years resolution, but I decided why wait!!! So I am now at 48 hours without nicotine!!!!! EVERYBODY GET OUT OF MY WAY LOL
The ultram is not helping with the pain so they uped it yesterday to what it is now. The creepy crawlies are 24/7 and that is why they wanted me to try the neurontin. That is what I believe messed me up so bad. I just can't take that med this was my second attempt and its just is not right for me.
Anyway this morning I feel pretty good, I think the ultram kicked in by taking 2 at a time. But Im going to the sleep center. I want to be with some one who deals and knows about RLS since I'm going to be in it for the long run. I am starting aerobic dance class on the 3rd to replace my need for nicotine. And to start taking better care of myself. I have learned through this forum that what I eat and how I treat myself will make a difference with rls. Im close to my 2 year chip with AA so its a good time to stop smoking one addition at a time. So what do ya think Jumpy sound like I'm on the right path????~~~~~~~~~~~~~~~~Lyndarae
RLS AND DEPRESSION
Dear Lyndarae:
What you are doing is amazing! and very good for you! Sic itur ad astra!
Old Roman praise in Latin: this is how you get to the stars!
So your medication is:
Mirapex 0.5 mg 3x per day (same as I take it now, there are 0.5 mg tablets available)
Ultram 100 mg 4x a day (I used to take 50 mg once a day)
Xanax 1mg at bedtime (I have never taken it but my daughter does) this is for panic attacks Xanax XR you only have to take it once a day!
Ultram at that dosage did not help me either and my neurologist does not believe in Ultram. She prescribed Hydrocodone 10 mg/650 mg one in the evening.
I also lucked out with Neurontin. It was augmentation too fast. Then when I stopped it and switched to Mirapex, I had terrible vertigos, especially getting out of bed.
If you still have paresthesia 24/7, something is seriously wrong! If the only thing you have is RLS, your cocktail should stop them completely. Possibly you have refractory RLS (see algorithm). They could return occasionally. as for me when I am under high stress or not taking Mirapex regularly. But 24/7, even if it is a slight exaggeration, is intolerable.
I am glad you are going to get a sleep test, especially since they are aware of RLS. What they can measure is PLMD, the number of near arousals in your leg muscles and change in sleep level, so make sure you get those results from them.
If you keep off cigarettes at least a week or two, then and only then try this new medication.
Congratulations and wishing you the best!
Your old friend, Jumpy
Old Roman praise in Latin: this is how you get to the stars!
So your medication is:
Mirapex 0.5 mg 3x per day (same as I take it now, there are 0.5 mg tablets available)
Ultram 100 mg 4x a day (I used to take 50 mg once a day)
Xanax 1mg at bedtime (I have never taken it but my daughter does) this is for panic attacks Xanax XR you only have to take it once a day!
Ultram at that dosage did not help me either and my neurologist does not believe in Ultram. She prescribed Hydrocodone 10 mg/650 mg one in the evening.
I stopped smoking as my new years resolution, but I decided why wait!!! So I am now at 48 hours without nicotine!!!!! EVERYBODY GET OUT OF MY WAY LOL
The creepy crawlies are 24/7 and that is why they wanted me to try the neurontin.
I also lucked out with Neurontin. It was augmentation too fast. Then when I stopped it and switched to Mirapex, I had terrible vertigos, especially getting out of bed.
If you still have paresthesia 24/7, something is seriously wrong! If the only thing you have is RLS, your cocktail should stop them completely. Possibly you have refractory RLS (see algorithm). They could return occasionally. as for me when I am under high stress or not taking Mirapex regularly. But 24/7, even if it is a slight exaggeration, is intolerable.
I am glad you are going to get a sleep test, especially since they are aware of RLS. What they can measure is PLMD, the number of near arousals in your leg muscles and change in sleep level, so make sure you get those results from them.
If you keep off cigarettes at least a week or two, then and only then try this new medication.
Congratulations and wishing you the best!
Your old friend, Jumpy
Jumpy Owl
Jumpy, I have a ????????
Hi, it's Jan
I had a sleep study done last spring. The technician showed me her computer read out and told me what it said. She said I had PLMD (which I already knew because my husband has seen evidence of that) and she also said I never reached level 4 sleep. However, the sleep doc said my problem was due to stress, and stress only!!!!
I KNOW that I have PLMD because my husband has actually counted to 20 between kicks and that my kicking lasted at least 30 min. I have done that for a looooong time!
Also, and here's my question Jumpy, I understand that they can now tell with a sleep study if you get to the restorative stage of sleep. Is that correct? I do dream, but I wake up approx. every 2 hours during the night. Obviously, I'm NOT getting restorative sleep. Evidently the sleep doc totally missed that or ignored the result, because, as I said, the sleep tech said I never reach stage 4. What do you think? I know you haven't seen the results of my study, but thought you might have an opinion. Should I have another sleep study done, or would it be a waste of time?
Thanks, Jumpy. I value your opinion greatly!!! Looking forward to your response!
As ever,
Jan
I had a sleep study done last spring. The technician showed me her computer read out and told me what it said. She said I had PLMD (which I already knew because my husband has seen evidence of that) and she also said I never reached level 4 sleep. However, the sleep doc said my problem was due to stress, and stress only!!!!
I KNOW that I have PLMD because my husband has actually counted to 20 between kicks and that my kicking lasted at least 30 min. I have done that for a looooong time!
Also, and here's my question Jumpy, I understand that they can now tell with a sleep study if you get to the restorative stage of sleep. Is that correct? I do dream, but I wake up approx. every 2 hours during the night. Obviously, I'm NOT getting restorative sleep. Evidently the sleep doc totally missed that or ignored the result, because, as I said, the sleep tech said I never reach stage 4. What do you think? I know you haven't seen the results of my study, but thought you might have an opinion. Should I have another sleep study done, or would it be a waste of time?
Thanks, Jumpy. I value your opinion greatly!!! Looking forward to your response!
As ever,
Jan
No one is alone who had friends.
Hi, Jan:
To answer your question first: Yes I am in favor of sleep studies provided they are done right. I wish they were less expensive so that the efficacy of medications could be judged more objectively.
All five levels of sleep stages are measured accurately by the polysomnograph, frequency, length, etc.
REM is also measured and I wonder why psychiatrists do not use such results to determine the severity of depression. According to a novel theory depressed people dream much more at the expense of relaxing and restorative sleep! The dreams usually are hard work for the brain and the brain uses it to resolve stress issues so the ruminative thinking cycle can be banished from our mind.
I meant to post to you after you wrote about anxiety. I diagnosed my wife (I know I should have a third party doing it) and I came to the conclusion that she had GAD (general anxiety disorder) which is the fifth (catch-all) classification of the five types of anxiety.
I was puzzled by the fact that anxiety and depression are often used interchangeably. I have a wonderful therapist now (a lady of Polish decent) whom I asked this question: are anxiety and depression two different things or anxiety a subclassification of depression? She said it is a little bit of both, but there are clear-cut anxiety cases of which again there are different types. It is quite possible to be depressed and anxious both.
Let me know Jan whether you will have another test and possibly the results.
With kind regards, the "depressed"
All five levels of sleep stages are measured accurately by the polysomnograph, frequency, length, etc.
REM is also measured and I wonder why psychiatrists do not use such results to determine the severity of depression. According to a novel theory depressed people dream much more at the expense of relaxing and restorative sleep! The dreams usually are hard work for the brain and the brain uses it to resolve stress issues so the ruminative thinking cycle can be banished from our mind.
I meant to post to you after you wrote about anxiety. I diagnosed my wife (I know I should have a third party doing it) and I came to the conclusion that she had GAD (general anxiety disorder) which is the fifth (catch-all) classification of the five types of anxiety.
I was puzzled by the fact that anxiety and depression are often used interchangeably. I have a wonderful therapist now (a lady of Polish decent) whom I asked this question: are anxiety and depression two different things or anxiety a subclassification of depression? She said it is a little bit of both, but there are clear-cut anxiety cases of which again there are different types. It is quite possible to be depressed and anxious both.
Let me know Jan whether you will have another test and possibly the results.
With kind regards, the "depressed"
Jumpy Owl
-
cornelia
consulting my cyberspace doc/blood pressure
Hi Jumpy, it's Corrie.
I am also sitting in the waitingroom today to ask you a question. May I?
The last week some strange things are happening with my blood pressure. I take 2 x 10mg enalapril for high blood pressure since 1996. From that time on my BP has always been 130/80 (hope european measures are the same as US ones).
I have been on Permax, Mirapex, but while on Dostinex after a few months I didn't feel well: very cold (never have been), bit dizzy, other mental state sometimes, not able to concentrate when not doing something that really needed my full attention. So I thought to measure my BP and it was down to 110/68 and it stayed on that for a few weeks. As I had sleep attacks anyway on Dostinex I had a sleep study and multiple latency test and the neuro took me off Dostinex.
BP normal again.
Now I have been on Requip 1 mg since May 2004 and am getting the same problems these last few weeks. I am on Neurontin 900 mg as well, which helps, but not always, the PLMW (While awake).
I think it's the Requip causing the problems. My BP fell down even to 94/64!
Can you give some advice, please?
Enough talk about myself.
I hope the Remeron is helping you with depression. I have tried it for getting more energy, but my limbs went crazy. With Trazodone too.
I am pleased you are with us again and hoping you get some solutions for your problems.
Working with deadlines is not good for you.
Bye Jumpy
Corrie
I am also sitting in the waitingroom today to ask you a question. May I?
The last week some strange things are happening with my blood pressure. I take 2 x 10mg enalapril for high blood pressure since 1996. From that time on my BP has always been 130/80 (hope european measures are the same as US ones).
I have been on Permax, Mirapex, but while on Dostinex after a few months I didn't feel well: very cold (never have been), bit dizzy, other mental state sometimes, not able to concentrate when not doing something that really needed my full attention. So I thought to measure my BP and it was down to 110/68 and it stayed on that for a few weeks. As I had sleep attacks anyway on Dostinex I had a sleep study and multiple latency test and the neuro took me off Dostinex.
BP normal again.
Now I have been on Requip 1 mg since May 2004 and am getting the same problems these last few weeks. I am on Neurontin 900 mg as well, which helps, but not always, the PLMW (While awake).
I think it's the Requip causing the problems. My BP fell down even to 94/64!
Can you give some advice, please?
Enough talk about myself.
I hope the Remeron is helping you with depression. I have tried it for getting more energy, but my limbs went crazy. With Trazodone too.
I am pleased you are with us again and hoping you get some solutions for your problems.
Working with deadlines is not good for you.
Bye Jumpy
Corrie
Hello Corrie:
I am not going to ask you why you were on cabergoline but I am glad you are not on it anymore. Here is a quote on this medication with no more comment from me.
It is hard for me to be impartial on hypertensive medication because they sucked me in also for not only taking that medication (of all types) for 20 years unnecessarily but they managed to mess up the rythm of the heart beat and they even wanted to do a triple bypass 20 years ago, luckily a catherization showed all blood vessels to be open.
After my younger bother died of a cardiac arrest, I started to pay more attention to my blood pressure so I measured it 3x a day for weeks both while taking medication at different types and doses and also without medication. Guess, what: my blood pressure was the most stable when I was on no medication. And it was between normal limits.
I stopped taking those medication. When I started to take RLS medications I was still watching my BP. and pulse. What I had was either tachycardia (after Hydrocodone) or orthostatic hypertension which is rare (orthostatic hypotension is more common). While on Neurontin I had the most problems including severe vertigo.
I have not been on Requip but it apparently lowers your blood pressure.
Talk it over with your doctor, does he know that you are on anti-hypertensive medication (AHPM)?
Discuss it with him, he/she will probably will take you off AHPM.
The best would be if you could measure your BP for several days morning noon and at night. Plot it or tabulate it and show it to your doctor. That once in a measurement during visit is insufficient to determine whether you are hypertensive or not.
My blood pressure at the doctor is 160/100 pulse 90 ( I am high strung).
Compare this with results I get at home: 128/73 pulse 78
Yes, the units are same here "mm of mercury", also called torr after the Italian Toricelli who made the first barometer.
Cabergoline ( ca-BER-goe-leen) is used to treat different types of medical problems that occur when too much of the hormone prolactin is produced. It can be used to treat certain menstrual problems, fertility problems in men and women, and pituitary prolactinomas (tumors of the pituitary gland).
It works by stopping the brain from making and releasing the prolactin hormone from the pituitary. Cabergoline use is usually stopped when prolactin levels are normal for 6 months. It may be given again if symptoms of too much prolactin occur again.
It is hard for me to be impartial on hypertensive medication because they sucked me in also for not only taking that medication (of all types) for 20 years unnecessarily but they managed to mess up the rythm of the heart beat and they even wanted to do a triple bypass 20 years ago, luckily a catherization showed all blood vessels to be open.
After my younger bother died of a cardiac arrest, I started to pay more attention to my blood pressure so I measured it 3x a day for weeks both while taking medication at different types and doses and also without medication. Guess, what: my blood pressure was the most stable when I was on no medication. And it was between normal limits.
I stopped taking those medication. When I started to take RLS medications I was still watching my BP. and pulse. What I had was either tachycardia (after Hydrocodone) or orthostatic hypertension which is rare (orthostatic hypotension is more common). While on Neurontin I had the most problems including severe vertigo.
I have not been on Requip but it apparently lowers your blood pressure.
Talk it over with your doctor, does he know that you are on anti-hypertensive medication (AHPM)?
Discuss it with him, he/she will probably will take you off AHPM.
The best would be if you could measure your BP for several days morning noon and at night. Plot it or tabulate it and show it to your doctor. That once in a measurement during visit is insufficient to determine whether you are hypertensive or not.
My blood pressure at the doctor is 160/100 pulse 90 ( I am high strung).
Compare this with results I get at home: 128/73 pulse 78
Yes, the units are same here "mm of mercury", also called torr after the Italian Toricelli who made the first barometer.
Jumpy Owl
-
cornelia
BP
Thanks, Jumpy, I still have a whole week to measure and I will! Talk it over then with the neuro.
I was on Cabergoline for RLS; apparently it is the best drug for 24/7 RLS. It was my own choice: I read about it in the Cal. Supportgroup treatment page. My neuro didn't know the med. He has another patient on it and cabergoline has given her life back. She has been on it for 18 months now.
See, everybody is different.
Corrie
I was on Cabergoline for RLS; apparently it is the best drug for 24/7 RLS. It was my own choice: I read about it in the Cal. Supportgroup treatment page. My neuro didn't know the med. He has another patient on it and cabergoline has given her life back. She has been on it for 18 months now.
See, everybody is different.
Corrie
Thanks, Jumpy
It's Jan
I really appreciate your response to my question, Jumpy. Interestingly enough, Sara and I though that perhaps I might have GAD also, during a converstion we had about anxiety at least a month before I was diagnosed with fibro! Since my diagnosis, I have had three panic attacks. However, my neurologist has taken me off of Klonopin (I came off of it gradually).
Thanks for your opinion on my sleep study. I think I will ask my GP to schedule another one!
Can I pick your brain one more time? If you don't have time for this, I totally understand.
My neurologist, who is the one who diagnosed me with fibro, prescribed Effexor XR, 75 mg. I have been taking it for about 8 weeks. About 3 weeks ago, I had a strange experience. The left side of my face, my throat, tongue, AND left arm became very numb. I didn't have any chest pain, but felt very odd. My husband took me to the ER. They did an ekg, an MRI and took blood. Everything seemed to be okay as far as my heart was concerned (according to the tests, I had not had a heart attack or a stroke). However, I'm a little bit concerned. There is a history cardiovascular disease in my family--father, aunt, and uncle.
Do you know anything about Effexor (side effects)? I have read a few things about the drug and am not really happy that I am on it, but would like your opinion. Again, I know you're not a doctor, BUT you know so much! Do you think the numbness is something I should be worried about? Has Gloria ever had any experiences like the one I had which was possibly caused by fibro?
Again, I appreciate any response you might have. And, if you are too busy, please say so. Thanks so much for answering my previous questions. I really appreciate you, Jumpy!
Fondly,
Jan
P.S. This is the last question I have for you (aren't you glad?). Ha! Hope you are doing fine.
I really appreciate your response to my question, Jumpy. Interestingly enough, Sara and I though that perhaps I might have GAD also, during a converstion we had about anxiety at least a month before I was diagnosed with fibro! Since my diagnosis, I have had three panic attacks. However, my neurologist has taken me off of Klonopin (I came off of it gradually).
Thanks for your opinion on my sleep study. I think I will ask my GP to schedule another one!
Can I pick your brain one more time? If you don't have time for this, I totally understand.
My neurologist, who is the one who diagnosed me with fibro, prescribed Effexor XR, 75 mg. I have been taking it for about 8 weeks. About 3 weeks ago, I had a strange experience. The left side of my face, my throat, tongue, AND left arm became very numb. I didn't have any chest pain, but felt very odd. My husband took me to the ER. They did an ekg, an MRI and took blood. Everything seemed to be okay as far as my heart was concerned (according to the tests, I had not had a heart attack or a stroke). However, I'm a little bit concerned. There is a history cardiovascular disease in my family--father, aunt, and uncle.
Do you know anything about Effexor (side effects)? I have read a few things about the drug and am not really happy that I am on it, but would like your opinion. Again, I know you're not a doctor, BUT you know so much! Do you think the numbness is something I should be worried about? Has Gloria ever had any experiences like the one I had which was possibly caused by fibro?
Again, I appreciate any response you might have. And, if you are too busy, please say so. Thanks so much for answering my previous questions. I really appreciate you, Jumpy!
Fondly,
Jan
P.S. This is the last question I have for you (aren't you glad?). Ha! Hope you are doing fine.
No one is alone who had friends.
Jumpy, You sure have been missed around here,so glad to see your name again. I am not even going to go there with the cymbalta. I"m going to check out what you said about refractory rls since I don't know what it is. My feet crawl all day the only time I don't feel it is when I first wake up in the morning, thats it. The zanax is for sleep don't know why but it puts me to sleep with no side effects(addiction). I went to the goodwill todayand bought a tape recorder Im going to use it every time I wake up during the night. I thought this might come in handy at the sleep clinic, thank you for your time and your valuable info~~~~~~~~~~~Lyndarae
"Patients and their families should be encouraged to be alert to the emergence of anxiety, agitation, panic attacks, insomnia, irritability, hostility, impulsivity, akathisia, hypomania, mania, worsening of depression, and suicidal ideation, especially early during antidepressant treatment."
Jumpy, honey--
Hi! Glad to see you around again. Always love to read your posts, even when they don't pertain to me directly.
I thought the quote above was interesting..... Isn't AKATHISIA an RLS-type condition? NOT something anyone on this board needs as a side effect of any medication.
And on the subject of anxiety/depression (which I'm afraid I haven't followed too well, because we lost our phone for a while due to heavy snow/wind)... I concur with what you've heard and believe. Anxiety and depression can be related sometimes, but are often separate conditions. I speak with conviction and experience.... been a GAD sufferer since puberty if not life-long, and almost NEVER suffer any type of depression.
My understanding is that they are controlled by similar brain chemistry changes and deficiencies... but not everyone reacts the same and/or gets both. I think I mentioned to you before, though, DO keep an eye on your diet/nutrition while you're treating your depression... food CAN help reduce the brain chem problems in many people.
Big hugs, dear Jumpy.
Sara
Jumpy, honey--
Hi! Glad to see you around again. Always love to read your posts, even when they don't pertain to me directly.
I thought the quote above was interesting..... Isn't AKATHISIA an RLS-type condition? NOT something anyone on this board needs as a side effect of any medication.
And on the subject of anxiety/depression (which I'm afraid I haven't followed too well, because we lost our phone for a while due to heavy snow/wind)... I concur with what you've heard and believe. Anxiety and depression can be related sometimes, but are often separate conditions. I speak with conviction and experience.... been a GAD sufferer since puberty if not life-long, and almost NEVER suffer any type of depression.
My understanding is that they are controlled by similar brain chemistry changes and deficiencies... but not everyone reacts the same and/or gets both. I think I mentioned to you before, though, DO keep an eye on your diet/nutrition while you're treating your depression... food CAN help reduce the brain chem problems in many people.
Big hugs, dear Jumpy.
Sara
Nice to be popular
but I am afraid I am not doing a good job answering the questions due to lack of time and poor wording.
I will take Corrie first, then the others in order a bit later as today I am really short on time, sorry !
Corrie, you are right about Cabergoline! I said no comment because I just posted the info from the company but I knew I posted about this drug via a summary I made from the Algorithm article. I checked the summary later and much to my dismay I found a serious error. I called Cabergoline a dopamine antagonist!!! when it clearly has to be an agonist. Which it is!
My neuorologist liked the SUMMARY best among all the papers I brought to her. Most doctors do not have the time to read the literature in detail. It is for researchers apparently. I urge everybody whose doctor seems to be interested in RLS (or just ignorant of some aspects) to print out the corrected version of Summary and give it to him/her during the next visit. It is two typewritten pages, about the maximum they will read thoroughly. Please print it somehow (copy and paste, e.g.)
Here is the corrected version:
______________________________________________________________________________________________________________________
An Algorithm for the Management of RLS
Condensed after M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004 by Frank J. Holly, Ph.D.
INTRODUCTION:
Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.
Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).
Severity: ranges from annoying and infrequent to distressing and daily.
Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.
Prevalence: 5-15% of population.
Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).
Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.
CLASSIFICATION of RLS based on severity:
The article distinguishes between three types of RLS:
Intermittent RLS
RLS that is troublesome enough to require treatment but does not necessitate require daily therapy
Daily RLS
RLS that is frequent and troublesome to necessitate daily therapy
Refractory RLS
Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:
o Inadequate initial response despite adequate doses
o Response that has become inadequate with time despite increasing doses
o Intolerable adverse effect
o Augmentation that is not controllable with additional earlier doses of the drug
TREATMENTS:
Intermittent RLS
Nonpharmacological therapy
• Determine ferritin level and administer iron replacement
• Mental alerting acitivites to reduce boredom
• Abstinence from caffeine, nicotine, and alcohol
• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.
Daily RLS
Nonpharmacological therapy
It is the same as for intermittent RLS
Medications
• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)
• Gabapentin/Neurontin (anticonvulsive)
• Low potency opioids (propoxyphene/codein, or opioid agonists, such as tramadol/Ultram
Refractory RLS
Medications
• Change to gabapentin/Neurontine from dopamine agonist
• Change to a different agonist
• Add a second agent such as gabapentin, benzodiazepine, or an opioid
• Change to high potency opioid or tramadol
Alternative, investigative, or potential FUTURE THERAPIES
The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.
Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..
Among potential new dopamine agonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.
Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.
_____________________________________________________________________________________________________________________
Lyndarae, make sure you do this. If it is a problem, let me know your address and I will mail you a printed copy which is better formated than this is. You will find the definition and treatment of refractory RLS in here, too.
I will take Corrie first, then the others in order a bit later as today I am really short on time, sorry !
Corrie, you are right about Cabergoline! I said no comment because I just posted the info from the company but I knew I posted about this drug via a summary I made from the Algorithm article. I checked the summary later and much to my dismay I found a serious error. I called Cabergoline a dopamine antagonist!!! when it clearly has to be an agonist. Which it is!
My neuorologist liked the SUMMARY best among all the papers I brought to her. Most doctors do not have the time to read the literature in detail. It is for researchers apparently. I urge everybody whose doctor seems to be interested in RLS (or just ignorant of some aspects) to print out the corrected version of Summary and give it to him/her during the next visit. It is two typewritten pages, about the maximum they will read thoroughly. Please print it somehow (copy and paste, e.g.)
Here is the corrected version:
______________________________________________________________________________________________________________________
An Algorithm for the Management of RLS
Condensed after M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004 by Frank J. Holly, Ph.D.
INTRODUCTION:
Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.
Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).
Severity: ranges from annoying and infrequent to distressing and daily.
Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.
Prevalence: 5-15% of population.
Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).
Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.
CLASSIFICATION of RLS based on severity:
The article distinguishes between three types of RLS:
Intermittent RLS
RLS that is troublesome enough to require treatment but does not necessitate require daily therapy
Daily RLS
RLS that is frequent and troublesome to necessitate daily therapy
Refractory RLS
Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:
o Inadequate initial response despite adequate doses
o Response that has become inadequate with time despite increasing doses
o Intolerable adverse effect
o Augmentation that is not controllable with additional earlier doses of the drug
TREATMENTS:
Intermittent RLS
Nonpharmacological therapy
• Determine ferritin level and administer iron replacement
• Mental alerting acitivites to reduce boredom
• Abstinence from caffeine, nicotine, and alcohol
• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.
Daily RLS
Nonpharmacological therapy
It is the same as for intermittent RLS
Medications
• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)
• Gabapentin/Neurontin (anticonvulsive)
• Low potency opioids (propoxyphene/codein, or opioid agonists, such as tramadol/Ultram
Refractory RLS
Medications
• Change to gabapentin/Neurontine from dopamine agonist
• Change to a different agonist
• Add a second agent such as gabapentin, benzodiazepine, or an opioid
• Change to high potency opioid or tramadol
Alternative, investigative, or potential FUTURE THERAPIES
The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.
Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..
Among potential new dopamine agonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.
Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.
_____________________________________________________________________________________________________________________
Lyndarae, make sure you do this. If it is a problem, let me know your address and I will mail you a printed copy which is better formated than this is. You will find the definition and treatment of refractory RLS in here, too.
Jumpy Owl
Jumpy, Thank you! My friend is comming tonight to hook up my printer at that time I will see if he can help me with this. If not I will get you my address. I know how busy you are so I will do my best to get this copied. My experiment with the tape record was a big hit I think is is going to come in handy. Last night I appered to get 4 hours sleep. And I had alot of hallucenations. I did some research about refractory Rls and I hate to say it but it hit home!!!!~~~~~~~~~~~~~~~~~Lyndarae
Hello, Jan:
I believe it is your turn. 
Sorry for being later than I planned.
You wrote:
Gloria asked me about Effexor a few days ago and again just yesterday. Is it not quite a coincidence?
When you mentioned numbness first I thought of TIAs . See below:
However, I do not think you had a TIA. If you also had some visual disturbance than the likelihood is greater.
Both my wife and Gloria have had symptoms of numbness similar to yours. I think they were related to stress.
I certainly would mention it to your doctor and see what he/she had to say. Now about EFFEXOR:
I suggested to my daughter to start to take Effexor again with the caveats mentioned in the text above.
I hope it helps, Jan.
Sorry for being later than I planned.
You wrote:
[My neurologist, who is the one who diagnosed me with fibro, prescribed Effexor XR, 75 mg. I have been taking it for about 8 weeks. About 3 weeks ago, I had a strange experience. The left side of my face, my throat, tongue, AND left arm became very numb. I didn't have any chest pain, but felt very odd. My husband took me to the ER. They did an ekg, an MRI and took blood. Everything seemed to be okay as far as my heart was concerned (according to the tests, I had not had a heart attack or a stroke). However, I'm a little bit concerned. There is a history cardiovascular disease in my family--father, aunt, and uncle.
Do you know anything about Effexor (side effects)? I have read a few things about the drug and am not really happy that I am on it, but would like your opinion. Again, I know you're not a doctor, BUT you know so much! Do you think the numbness is something I should be worried about? Has Gloria ever had any experiences like the one I had which was possibly caused by fibro?
Gloria asked me about Effexor a few days ago and again just yesterday. Is it not quite a coincidence?
When you mentioned numbness first I thought of TIAs . See below:
[Transient ischemic attacks (TIA) are caused by temporary disturbance of blood supply to a restricted area of brain and cause recurrent and brief (less than 24 hours) neurologic dysfunctions. If there are neurological symptoms persisting for more than 24 hours, it is classified as a cerebrovascular accident (stroke).
Symptoms vary widely from person to person depending on the area of the brain involved. The most frequent symptoms include temporary loss of vision (typically amaurosis fugax), difficulty speaking (dysphasia), weakness on one side of the body hemiparesis, numbness usually on one side of the body and loss of consciousness.
Patients diagnosed with a TIA are sometimes said to have had a warning for an approaching cerebrovascular accident. If the time period of blood supply impairment lasts more than a few minutes, the nerve cells of that area of the brain die permanently and cause permanent neurologic deficit. One third of the people with TIA later have recurrent TIAs and one third have a stroke due to permanent nerve cell loss.
However, I do not think you had a TIA. If you also had some visual disturbance than the likelihood is greater.
Both my wife and Gloria have had symptoms of numbness similar to yours. I think they were related to stress.
I certainly would mention it to your doctor and see what he/she had to say. Now about EFFEXOR:
Before starting EFFEXOR® XR (venlafaxine HCl), tell your doctor about any medicines you're taking, including over-the-counter drugs and herbal supplements. People taking MAOIs should not take EFFEXOR XR. Patients taking antidepressants should be watched closely for signs that their condition is getting worse or that they are becoming suicidal, especially when they first start therapy, or when their dose is increased or decreased. Patients should also be watched for becoming agitated, irritable, hostile, impulsive, or restless. Such symptoms should be reported to the patient’s doctor right away. EFFEXOR XR may raise blood pressure in some patients, so blood pressure should be monitored regularly. When people suddenly stop using or quickly lower their daily dose of EFFEXOR XR, discontinuation symptoms may occur. Talk to your doctor before discontinuing or reducing your dose of EFFEXOR XR. Pregnant or nursing women shouldn’t take any antidepressant without consulting their doctor. Until you see how EFFEXOR XR affects you, be careful doing such activities as driving a car or operating machinery. Avoid drinking alcohol while taking EFFEXOR XR. Common side effects with EFFEXOR XR include anorexia, constipation, dizziness, dry mouth, insomnia, nausea, nervousness, sexual side effects, sleepiness, sweating, and weakness. EFFEXOR XR is for adults 18 and over. Ask your doctor if EFFEXOR XR is right for you.
I suggested to my daughter to start to take Effexor again with the caveats mentioned in the text above.
I hope it helps, Jan.
Jumpy Owl
Hello, Sara:
Thanks for mentioning the diet which I am ignoring for the present. Can you give me some hints what I should take or not to take.
You were so right on Akathisia. Does it not sound like refractory RLS???
I included hypomania as my neurologist accused me of it (she is probably right about the inflated self-esteem
).
Hugs to you, too!
You were so right on Akathisia. Does it not sound like refractory RLS???
Akathisia
Akathisia is a neurologically driven agitation ranging from mild leg tapping, feeling "caffeinated" to severe panic, an extreme manic state and hyper-sensitivity of the nervous system. Symptoms: motor restlessness and specifically, a feeling of muscular quivering; one of the possible complications of treatment with the phenothiazines. Often, the symptoms is of such intensity that it becomes impossible for the patients to sit still day or night, and which is described by them as more difficult to endure than any of the symptoms for which they had been originally treated. Acquaintance with this symptom of akathisia, which often persists for a considerable time after the drug has been withdrawn, is important because it is sometimes mistaken for an agitated depression and wrongly treated.
Source: Psychiatric Dictionary, Fifth Edition, Oxford University Press, 1981
Mania
Mania is an abnormally elated mental state, typically characterized by feelings of euphoria, lack of inhibitions, racing thoughts, diminished need for sleep, talkativeness, risk taking, and irritability. In extreme cases, mania can induce hallucinations and other psychotic symptoms. Hypomania is a term applied to a condition resembling mania. It is characterized by persistent or elevated expansive mood, hyperactivity, inflated self esteem, etc., but of less intensity than mania. Severe mania may have psychotic features.
Source: Blue Cross Blue Shield of Massachusetts http://www.ahealthyme.com/topic/topic100587127
I included hypomania as my neurologist accused me of it (she is probably right about the inflated self-esteem
).
Hugs to you, too!
Jumpy Owl
JUMPY, THANK YOU!!
Hi, It's Jan
Jumpy, thank you so much for taking the time to answer me!! Your post helped me a lot!!
I have a doctor's appointment on the 11th to discuss the numbness I experienced. I didn't have any impaired vision, so it might very well have been due to stress. It helped to know that Gloria and your wife have also experienced numbness! I had an MRI, EKG, and blood work which were are normal. Am anxous to see what my doctor says, too!!
And, thanks for the info on Effexor. You've eased my mind! I value your opinion so much, Jumpy!!
I hope you're feeling better! I think of you often, Jumpy. Thanks for being such a good friend.
Jan
Jumpy, thank you so much for taking the time to answer me!! Your post helped me a lot!!
I have a doctor's appointment on the 11th to discuss the numbness I experienced. I didn't have any impaired vision, so it might very well have been due to stress. It helped to know that Gloria and your wife have also experienced numbness! I had an MRI, EKG, and blood work which were are normal. Am anxous to see what my doctor says, too!!
And, thanks for the info on Effexor. You've eased my mind! I value your opinion so much, Jumpy!!
I hope you're feeling better! I think of you often, Jumpy. Thanks for being such a good friend.
Jan
No one is alone who had friends.