In my last post, I talked about the conference and what I learned about augmentation. In this one, I want to share some of the general positive things I learned.
Research is ongoing. This is good!!! There are studies that have been done recently and others that are ongoing that are trying to learn more about the genetics of the disorder, the way that it affects people differently, and medications that work on it.
One researcher, David Rye, is completing a study of a large population of RLS sufferers in Iceland. He's trying to track down the genetic component and determine how primary RLS is handed down. He also has RLS, so he has first-hand knowledge of how awful it is!
Another thing that I kept hearing is that we have a right to care! It's our responsibility to fight for that care, though. Educating ourselves and continuing to be vocal proponents for our own care is the only way we will get it. If our doctors do not listen, we can try to educate them or we can find someone who will listen. Being at the conference with many doctors who "get" it made me have hope that more and more will over time.
There are new medications out there or on the way. For those who haven't tried it, ropinerole (Requip) is the newest darling of the dopamine agonists. So far it has a much lower rate of augmentation than its close relative, Mirapex (pramipexol). But there are other meds, too. If you haven't tried them, there are three anti-epileptics that can be tired: topamax, keppra and gabitril. There are also newer formulations of levadopa/carbidopa that prolong its availability.
Intraveneous iron therapy is an experimental therapy that has proven useful to some, but is not without side effects. Currently this is only used for FDA iron deficiency or in approved clinical studies. Studies are ongoing. Some new dopamine transport blockers are in feasability trials and may offer some people help. Within 7 years, there should be some new slow wave sleep medications available. There are also some newer hypnotics/sedatives such as Astora and Enoplan that are available now.
More research is ongoing in the role of iron. The study that looked at the brains of 12 RLS sufferers was able to identify that there is a decrease in ferritin and and increase in transferrin in these brains. It was able to determine that the iron is getting in to the brain, but not getting to the right place. The increase is transferrin is because it's looking for the iron and not finding it. From this research, they know that there are a decreased amount of these receptor cells compared to the control brains. All of this research is leading to more research as they try to find the gene that might cause the problems.
There were other sessions I didn't get to, so that's the end of what I learned that gave me hope and made me feel that we are moving forward. This is the second or third most common sleep disorder and finally I feel like people are taking it seriously. I also left with an increased desire to help us get what we need. I'm not sure how, but I want to find a way to increase knowledge to health care providers.
What I Learned at the Conference: Hope
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ViewsAskew
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good morning
Helloooooooo My dear View,
I hope your trip home was a good one. I have a question, was hoping you had some back up for me on the subject.
We have had talks about how sensitive some of us seem to be. Do you remember anything about the Docs. talking about RLS and a higher anxiety level? I thought I heard one of them say. I was hoping you heard it too. Help me fill the blanks here.
I'll wait for your response, I trust your info more than mine right now. If not I'll go back through the packet.
My memory is that this maybe in relation to the iron levels and the lack of usage as well.
Your thoughts on this View, please.
Hugs to you in Chicago..............by the way you would be an awesome group learder.
I hope your trip home was a good one. I have a question, was hoping you had some back up for me on the subject.
We have had talks about how sensitive some of us seem to be. Do you remember anything about the Docs. talking about RLS and a higher anxiety level? I thought I heard one of them say. I was hoping you heard it too. Help me fill the blanks here.
I'll wait for your response, I trust your info more than mine right now. If not I'll go back through the packet.
My memory is that this maybe in relation to the iron levels and the lack of usage as well.
Your thoughts on this View, please.
Hugs to you in Chicago..............by the way you would be an awesome group learder.
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ViewsAskew
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You talking to me?
Ummmm. . .I do remember them saying that cognitive function is decreased, not just from lack of sleep but from the RLS, too. Must be what's happening now, because I have no recollection of anxiety. Let me stroll through my notes. . . . . . . . Nope. I don't have it. Maybe your brain was working while mine wasn't. But, my favorite idea is that you made it up (I don't look bad that way). 
Cognitive function decreasing--that's me!
Hi View and Becat! It's Jan
Well, now I know why I have CRS! Decreased cogninitive function! Seriously, I have lost so much sleep and you NEVER catch up! I am sleeping a lot better (6-7 hours), but it's not always uninterrupted. At least I get more than I did! I can tell you from personal experience, sleep deprivation is really dangerous and very serious! I went through a phase of no sleep last spring, getting only 2 hours a night and some nights, no sleep at all. I suffered from it for about 3 weeks and actually had hallucinations. And, I believe I have GAD. I'm so glad you two were at the meeting at Long Beach! You bothd did a great job! I'm saving my pennies for next year!
Jan
Well, now I know why I have CRS! Decreased cogninitive function! Seriously, I have lost so much sleep and you NEVER catch up! I am sleeping a lot better (6-7 hours), but it's not always uninterrupted. At least I get more than I did! I can tell you from personal experience, sleep deprivation is really dangerous and very serious! I went through a phase of no sleep last spring, getting only 2 hours a night and some nights, no sleep at all. I suffered from it for about 3 weeks and actually had hallucinations. And, I believe I have GAD. I'm so glad you two were at the meeting at Long Beach! You bothd did a great job! I'm saving my pennies for next year!
Jan
No one is alone who had friends.
SOME OF WHAT I LEARNED
OK EVERYONE HERE IS SOME OF THE INFO ON IRON IN OUR BODIES. I HAVE INCLUDED THE WEB SITES I FOUND IT ON. MOST RELATED TO PREGNANCY, BUT STILL HELPFUL INFORMATION.
FERRITIN, IS THE IRON SUPPLY WE USE IN OUR BRAINS. TRANFERRIN IS HOW THE FERRITIN IS MOVED AROUND, OR CARRIES FERRITIN INTO THE CELL WALL. TRANSFERRIN, WHEN CONNECTED TO FERRITIN LOOKS LIKE SPERM, REALLY IT DOES. TRANSFERRIN ADDING A TAIL. MOST OF THE BRAIN TISSUE STUDIES WE WERE INTRODUCED TO, SHOWED THAT WE DON'T HAVE TAILS ON OUR FERRITIN AND OUR IRON TENDS TO BUNCH UP.
SO I WENT LOOKING FOR MORE ON THE SUBJECT AND FOUND THIS INFORMATON. BELOW. THOUGHT SOME OF YOU MIGHT ENJOY OR GET SOMETHING OUT OF THIS. * THIS INDICATES MY NOTES LAST NIGHT WHILE READING ALL OF THIS.*************r
In normal tissue, iron rarely exists as a free ion but rather is bound to a variety of active proteins including hemoglobin and myoglobin, transport proteins such as transferrin, and storage proteins such as ferritin.
http://jpet.aspetjournals.org/cgi/conte ... 283/3/1095
Measuring serum ferritin levels is a fairly new medical test (*NOTE IS NOT A CHEAP TEST ITHER)that provides a good indication of iron storage levels. A normal value is 15-200 mcg. A level below 15 mcg. suggests very depleted iron reserves. Iron toxicity may show ferritin levels in the thousands. *RLS PEOPLE SHOULD BE AT LEAST 50 COUNT HERE***
(iron/ferritin) attached to transferrin, which transports iron to the bone marrow, liver, and other tissues for its functions in processing hemoglobin, myoglobin, and various enzymes. Fortunately, the body conserves iron very well, though this increases the possibility of toxicity. Toxicity has not been a great concern until recently, when the possibility of liver irritation and the increased risk of heart disease in men and postmenopausal women due to the oxidant effect of iron was suggested.
Many factors can increase iron absorption from the intestines and improve our chances of maintaining adequate body levels. Absorption improves when there is increased need for iron, as during growth periods, pregnancy, and lactation or after blood loss. Acids in the stomach, such as hydrochloric acid, and ascorbic acid (vitamin C) in the small intestine help change any ferric iron to the more easily absorbable ferrous form. Citrus fruits and many vegetables contain vitamin C and therefore help our iron absorption. The animal flesh foods have the more easily absorbed "heme," or blood, iron and also provide amino acids, which stimulate production of hydrochloric acid in the stomach. Cooking with an iron skillet will add iron to the food and make more of it available for absorption. Copper, cobalt, and manganese in the diet also improve iron absorption.
Likewise, many factors can reduce the body's iron absorption. Low stomach acid or taking antacids or other alkalis will diminish iron absorption. Rapid gastric motility reduces the chance to absorb iron, which is a slow process anyway. Phosphates, found in meats and soft drinks; oxalates, in spinach, chard, and other vegetables; and phytates, in the whole grains, all can form insoluble iron complexes or salts that will not be absorbed. Soy protein is being researched, as it may also reduce iron absorption. The caffeine and tannic acid in coffee and tea lower absorption of iron. Low copper in the gut and in the body reduces iron absorption, and high calcium can compete with iron. Supplementing calcium with iron may create a more alkaline digestive medium, which further reduces iron absorption. Iron absorption usually decreases with age as well.
http://www.healthy.net/library/books/ha ... als/fe.htm
Given the essential nature of iron to our metabolism, the body makes use of a number of compounds to store and transport iron, and there are lab tests for each. A look at the iron level reflects the amount of the mineral inside the hemoglobin of the red blood cells. Ferritin is the storage substance, and there are normal values to determine how your storage compares with those of a normal population. Total iron binding capacity (TIBC) reflects the body's ability to transport iron to and from storage. Transferrin is the compound that actually carries out the iron transfers, and there is a specific test that checks transferrin saturation to indicate how well the iron transportation process is working.
In any discussion of iron, it is important to mention that this mineral has a potential for toxicity, so don't overdo it. The body makes a protein that assists with iron absorption, and less tends to be available when the body's iron stores are full. On the other end of the spectrum, there is a genetic iron-storage disease called hemochromatosis in which the body is unable to rid itself of excess iron; this can wreak havoc on many bodily systems. The tests mentioned above can be used in the diagnosis of this condition.
http://www.fortwayne.com/mld/cctimes/li ... 093670.htm
Although the health and functional consequences of anemia -- including fatigue and impaired endurance and more health problems during and after pregnancy -- are well-documented, few researchers have looked at the functional consequences of iron depletion without anemia. They do know from previous studies, however, that iron-deficient but non-anemic rats have impaired endurance capacity when compared with normal rats.
http://www.pslgroup.com/dg/2AA5A.htm
OK THERE, JUST HAD TO GET THIS OUT OF MY HEAD..........IF I REALLY UNDERSTAND THIS STUFF, WE NEED TRANFERRIN. WE NEED THE TAILS HERE.
ENJOY
FERRITIN, IS THE IRON SUPPLY WE USE IN OUR BRAINS. TRANFERRIN IS HOW THE FERRITIN IS MOVED AROUND, OR CARRIES FERRITIN INTO THE CELL WALL. TRANSFERRIN, WHEN CONNECTED TO FERRITIN LOOKS LIKE SPERM, REALLY IT DOES. TRANSFERRIN ADDING A TAIL. MOST OF THE BRAIN TISSUE STUDIES WE WERE INTRODUCED TO, SHOWED THAT WE DON'T HAVE TAILS ON OUR FERRITIN AND OUR IRON TENDS TO BUNCH UP.
SO I WENT LOOKING FOR MORE ON THE SUBJECT AND FOUND THIS INFORMATON. BELOW. THOUGHT SOME OF YOU MIGHT ENJOY OR GET SOMETHING OUT OF THIS. * THIS INDICATES MY NOTES LAST NIGHT WHILE READING ALL OF THIS.*************r
In normal tissue, iron rarely exists as a free ion but rather is bound to a variety of active proteins including hemoglobin and myoglobin, transport proteins such as transferrin, and storage proteins such as ferritin.
http://jpet.aspetjournals.org/cgi/conte ... 283/3/1095
Measuring serum ferritin levels is a fairly new medical test (*NOTE IS NOT A CHEAP TEST ITHER)that provides a good indication of iron storage levels. A normal value is 15-200 mcg. A level below 15 mcg. suggests very depleted iron reserves. Iron toxicity may show ferritin levels in the thousands. *RLS PEOPLE SHOULD BE AT LEAST 50 COUNT HERE***
(iron/ferritin) attached to transferrin, which transports iron to the bone marrow, liver, and other tissues for its functions in processing hemoglobin, myoglobin, and various enzymes. Fortunately, the body conserves iron very well, though this increases the possibility of toxicity. Toxicity has not been a great concern until recently, when the possibility of liver irritation and the increased risk of heart disease in men and postmenopausal women due to the oxidant effect of iron was suggested.
Many factors can increase iron absorption from the intestines and improve our chances of maintaining adequate body levels. Absorption improves when there is increased need for iron, as during growth periods, pregnancy, and lactation or after blood loss. Acids in the stomach, such as hydrochloric acid, and ascorbic acid (vitamin C) in the small intestine help change any ferric iron to the more easily absorbable ferrous form. Citrus fruits and many vegetables contain vitamin C and therefore help our iron absorption. The animal flesh foods have the more easily absorbed "heme," or blood, iron and also provide amino acids, which stimulate production of hydrochloric acid in the stomach. Cooking with an iron skillet will add iron to the food and make more of it available for absorption. Copper, cobalt, and manganese in the diet also improve iron absorption.
Likewise, many factors can reduce the body's iron absorption. Low stomach acid or taking antacids or other alkalis will diminish iron absorption. Rapid gastric motility reduces the chance to absorb iron, which is a slow process anyway. Phosphates, found in meats and soft drinks; oxalates, in spinach, chard, and other vegetables; and phytates, in the whole grains, all can form insoluble iron complexes or salts that will not be absorbed. Soy protein is being researched, as it may also reduce iron absorption. The caffeine and tannic acid in coffee and tea lower absorption of iron. Low copper in the gut and in the body reduces iron absorption, and high calcium can compete with iron. Supplementing calcium with iron may create a more alkaline digestive medium, which further reduces iron absorption. Iron absorption usually decreases with age as well.
http://www.healthy.net/library/books/ha ... als/fe.htm
Given the essential nature of iron to our metabolism, the body makes use of a number of compounds to store and transport iron, and there are lab tests for each. A look at the iron level reflects the amount of the mineral inside the hemoglobin of the red blood cells. Ferritin is the storage substance, and there are normal values to determine how your storage compares with those of a normal population. Total iron binding capacity (TIBC) reflects the body's ability to transport iron to and from storage. Transferrin is the compound that actually carries out the iron transfers, and there is a specific test that checks transferrin saturation to indicate how well the iron transportation process is working.
In any discussion of iron, it is important to mention that this mineral has a potential for toxicity, so don't overdo it. The body makes a protein that assists with iron absorption, and less tends to be available when the body's iron stores are full. On the other end of the spectrum, there is a genetic iron-storage disease called hemochromatosis in which the body is unable to rid itself of excess iron; this can wreak havoc on many bodily systems. The tests mentioned above can be used in the diagnosis of this condition.
http://www.fortwayne.com/mld/cctimes/li ... 093670.htm
Although the health and functional consequences of anemia -- including fatigue and impaired endurance and more health problems during and after pregnancy -- are well-documented, few researchers have looked at the functional consequences of iron depletion without anemia. They do know from previous studies, however, that iron-deficient but non-anemic rats have impaired endurance capacity when compared with normal rats.
http://www.pslgroup.com/dg/2AA5A.htm
OK THERE, JUST HAD TO GET THIS OUT OF MY HEAD..........IF I REALLY UNDERSTAND THIS STUFF, WE NEED TRANFERRIN. WE NEED THE TAILS HERE.
ENJOY
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Guest
the new stuff!
hay all,hope everyone is ok! i guess there's no real doing fine when coping w/ rls,but any who,how much was said about the new stuff? requip (ropinirole) i have heard that it is new fda approved & little side affects!! ANYONE TRY IT YET????? 
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bradyferguson
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ViewsAskew
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Requip
Several studies have shown Requip is effective (one is printed on this website: http://beta.restlesslegs.org/news/. It also seems to have a lower augmentation rate than Mirapex and much lower than Sinemet. I've seen several people post (some on another board) about how much they like it. For me, the jury is still out. I tried it while trying to get off of Mirapex, which had caused horrible augmentation, rebound and other side effects. It seemed that it perpetuated the problems I had with Mirpapex. Now having been off of the Mirapex for awhile, I'm trying it again. I haven't taken it long, but I *think* I have some augmentation already and definitely have some of the side effects I had from the Mirapex. On the other hand, sleep seems better. So, for me, the jury is still out.
For those that tried it and got sick (nausea, vomiting), it seems that is common when it's tried at higher starting doses, and WILL stop within a short period.
Ann
For those that tried it and got sick (nausea, vomiting), it seems that is common when it's tried at higher starting doses, and WILL stop within a short period.
Ann
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Rubyslipper
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Sorry it took me so long to show up on the board but it's been good to see the info brought back. As to the anxiety, mainly it was decided that anxiety is usually brought about by the lack of sleep and how we deal with it. But I think it is a vicious cycle. You're awake because of the RLS and you feel anxious because you know you need to sleep which gives you more reason not to sleep. Anxiety and stress make RLS worse and so it goes. There was also a train of thought that RLS causes anxiety and cognitive loss in and of itself, not just as a result of sleep deprivation. Getting personal here, I really enjoyed meeting my new friends from the board in person. Love you guys!!! For anyone in the least interested, the meeting next year will be in Orlando FL Nove 11-12. As Views stated, we came away with HOPE for the future, not only in the research being done and new medications available, but because we came together as a group that is dedicated in finding a way to deal with this, if not cure it. There was so much support from everyone and so much information exchanged, that it will take me weeks to organize it all. (And if I don't, I can blame it on the RLS taking away my organizational skills! LOL) Honestly, it was a wonderful time!