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Please help...severe RLS and bipolar disorder...

Hello,

I am new here and hope you or someone can help me, as this is the first forum I have ever been a part of! Please allow me to tell you a little about myself so you can understand my plight. I am a 33 year old male, who just completed all my college work for a degree in business. I have been unemployed due to a lay-off which happened one year ago. I am actively looking for a job, but alas, it hasn't been esay, especially with school (which is now over).
I suffer from Bipolar II Disorder, severe refractory Restless Legs Disorder, and a bit of anxiety with depression (bipolar related). Now I know what you are thinking; some of the medicines that treat bipolar disorder can make RLS worse, and I am aware of that and have tried to avoid those meds, even though at times my psychiatrist made me try them (with no success).
I do see a neurologist and he is somewhat baffled as he doesn't have any other patients that have bipolar II with severe rls. My rls is so bad that I get it 24 hours of every day! I have it right now and can barely sit still! I had all blood work done and my iron and other mineral levels are fine!
Here are the meds I am currently taking: Depakote (750 mg); Klonopin (0.25 mg), METHADONE (yes, methadone for the RLS; 30 mg a day), NEURONTIN (for the RLS, 2400 mg a day), Ambien (10 mg a day).
I have tried every dopamine agonist on the planet and I developed severe augmentation! I will not try them again, as they only made my RLS worse.
The interesting part is that I was doing okay up until a few weeks ago, then bam; my RLS returned with a vengeance! Now I don't think it will ever go away!
I used to get bouts of akathasia with higher levels of Depakote so about five months agao I dropped my Depakote from 1500mg to 750 mg (with a doctor's okay). Again, this ws five months ago, and the akathasia at that time went away leaving me to believe the Depakote caused it!
I am sorry this is long, but here is the jist of this whole thing: A few weeks ago, I was doing fine with my RLS (it was well maintained), now it is not! I did NOT change any meds and am left suffering 24/7! The mornings are wore than the evenings because at night I have the full doses of meds circling through my body! If anyone can help please do provide info! Here are the meds I am on, once again: METHADONE (30 mg a day), NEURONTIN (2400mg a day), DEPAKOTE (750mg a day), KLONOPIN (0.25mg a day), and AMBIEN (10mg a day). Thank you and God Bless!
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Avatar universal
I am a 54 year old woman who has been suffering with severe restless legs syndrome for 35 years. A month ago, I accidently found a method to eliminate the symptoms for approximatel 24 hours. I call it the fetal stretch and it has changed my life. When i feel the symptoms resuming, i simply lay on my side, get into a very tight fetal position, really stretching the back and legs, hold for 2 minutes, release, and symptoms disappear for about 24 hours.
I blelieve it is the stretching of the back that is doing something.
I am now on a mission to tell as many people as possible. Ionly wish i had discoveed this many years ago. So many years of suffering!
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Avatar universal
I believe strongly in Primum non nocere--First Do No Harm.  I would try using magnesium. Many drugs cause magnesium depletion. That along with inadequate intake can cause MANY nerve and muscle symptoms, such as twitches, cramps, tension, hyperactivity, restlessness, constant movement, zips/zaps, vibratory sensations, and even panic attacks. It also can produce cardiovascular-related symptoms, like palpitations, rhythm problems, and high blood pressure. Constipation and insomnia can also result from deficiency. More subtle symptoms are increased sensitivity to light and sound, which may manifest as difficulty adjusting to headlights in oncoming traffic (without eye disease) or easily being startled by loud noises. You don't have to have all these symptoms; these are just some that may point to magnesium deficiency, as it is fundamental to so many processes in the body, Unfortunately, serum magnesium is about useless in detecting it because most magnesium is in the cells. RBC magnesium does not always detect deficiency either. About the best test I know of (although not fool proof) is the magnesium loading test (urine collection test involving injection of magnesium). Of course, a safe (and cheaper) option is to increase magnesium intake. Google a food list for magnesium content, but to boost levels quickly, try supplementing.  Brewer's Yeast (don't worry, doesn't cause yeast infections) might be a good option for you because it also contains abundant natural B vitamins. I use Lewis Labs Brewer's Yeast for my patients, as you can get it in various forms that dissolve well in shakes or can easily be sprinkled on foods. I prefer the synergy of whole foods, but if you decide on a supplement pill or capsule, start slowly, as too much at one time could cause diarrhea. 350 mg of ELEMENTAL magnesium would be my choice. Glycinate or taurate are excellent chelated forms, but citrate is also good. If you tend to have soft stools, you could just go with carbonate. Remember to look at the "elemental" amount, not just the total milligrams.  Chlorophyll Complex (Standard Process) is also a good concentrated source, with many other benefits. (Chlorophyll is a lot like hemoglobin, but it contains magnesium instead of iron. Unless they have a bleeding disorder, liver disease, or are on antacids, which decrease absorption, iron does not seem to be the problem in men as much as in pre-menopausal women.)  There are other possibilities, of course, but when I hear hoof beats, I look for horses before zebras.  ; )
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Avatar universal
Hi, I'm a female 46 with sarcoidosis, cirrhosis, big time anemia, and severe rls- every day for me too, I think some is augmentation, but don't want stronger meds,  I'm on Carbo/levodopa and a little bit of oxycodone so I don't chew my legs off.
  Used to have depression and anxiety, depression gone, I'm pretty hyper tho'.  
  This really isn't about meds, I discovered something about my rls the other day.  I can really be rocking and if I start doing math, like balancing my finances the rls really lessens and sometimes stops altogether.  I'm noticing that if my mind switches mode to do something that doesn't come naturally the twitching shuts off.
  I wonder if your rls is worse because you are out of school and your mind might not be taxed as much.  I hope this is not offending you, I am just so thrilled that I might have found a way to get a little peace w/out doping myself to sleep.
  If I can't sit still, I cook - have to eat super healthy everything from scratch diet.  I bounce, twitch and dance around in the kitchen.  
  I also have a lot of trouble sitting to watch a movie. I have one of those big plastic balls that you use at the gym, and I find balancing on that is  much more comfy than jerking in a stable chair.  Sounds weird, but it keeps your back looser too.  I'm 5' 5'' and I use a 65cm ball.  
   I just reread your post.  You have a whole lot of extra chemical things firing in your brain at once.  Anxiety, bi-polar, Rls, they are all things in my experience change through time with season, diet, exercise level, medication, and the magic stuff no doctor can explain.  
Do as much research as you can.  The doctors will be able to help you change things around, again and again, as some things work and some don't.  I started really taking charge of my health only in the last 4 yrs or so, and life is so much better.  One thing is for sure, for people like us with interlocking health problems life is never dull.  
  Your fear of remaining in one state of health (recent Rls crisis) is groundless, it ain't gonna happen.
  My Rls got worse the past year+ because my anemia is worse.  I just gave up I twitch, bounce, and rock my way through life. Sometimes not so much, sometimes a lot.  I'm just thankful I don't have Tourette's.
  People get bothered by my twitching but, when I show I don't care, they relax.  My family was ready to tie me to a chair over the movie bouncing, so glad I use the ball now.
  Good luck - the kind you make yourself and the other one too
  
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Avatar universal
Hello,

First I am male; this was stated in my first post, so menstrating is not one of my problems. As for serum levels, once again; I had them checked and continue to have them checked every 6 months as I see one of the top neurologists in my region. That was the first thing he checked along with iron and other vitamin/mineral counts. He finds it hard to treat me due to my bipolar disorder as well.

Second, I do appreciate the help; but has anyone tried or had any luck with Lyrica? This is something I am looking to learn more about, as I would like to hear from patients who have used this medication and had either success or failure with the drug. Keep in mind that I am prone to "akathasia" (a movement disorder) and from what I hear Lyrica can cause this.

I thank you for all your replies, and look forward to hearing about other treatments and solutions; not just the usual "have your serum levels checked."

Sincerely yours,

wormy76
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Avatar universal
I left out the word "may" in the sentence, "If your RLS has more than one cause, then there may not be any one cure that will relieve you 100%."
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Avatar universal
Okay, good luck to you both.  But at the risk of being obnoxious, don't take it on faith that all appropriate bloodwork has been done, just because you went to the lab and got stuck.  Serum ferritin is usully an extra box for the doctor to check on the lab sheet.  It may not be included in a complete metabolic panel.  If you do believe that it has been done, I invite you to find out what the result was.  

Some doctors do not order serum ferritin, because they think that unless you are clinically anemic as measured by your "H&H" (hematocrit and hemoglobin), then you have enough iron in your system.  Some doctors even get a low result back for serum ferritin and do not understand the significance of it.  (This happened to me.)  They do not know that even marginally low iron stores can produce the symptoms of RLS.

Any female who is still menstruating, and especially a woman who has heavy periods, is at risk to have low serum ferritin.  That was the key for me.  I had fibroid tumors and had heavy bleeding every month.  As soon as I had a hysterectomy, the majority of my RLS problem was taken care of.  The rest of the problem was from being on antidepressant medication for years and years, and even though I now have been off all psychotropic medication for almost 20 years, I think that is why I still have some lingering RLS.  Or maybe I was just predisposed to it in the first place.  Or both.  

If your RLS has more than one cause, then there not be any one cure that will relieve you 100%.  But every piece of the puzzle that you can put together can result in partial relief, and two or three things that give partial relief can add up to substantial help.  

Here is a good article about RLS.  http://www.aafp.org/afp/20000701/108.html  

Again, good luck to both of you.
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Avatar universal
Hello,

I thank you both for your replies and welcome others. Yes, all blood work has been done. They do NOT know if there is a link between RLS and my bipolar or something else. Methadone has been a GODSEND, as it does help with some of the symptoms, as I have this very severe! My symptoms rated a 9 (10 being the highest) on a "discomfort" or pain chart; but since I used Methadone; I have been able to lower my discomfort level to 6.5/7. While this isn't perfect, it is something.
Unfortunately I suffer every day; all the time. They want to eventually run MORE TESTS, but I don't know if I should become a science experiment. If anyone has any other ideas, let me know. My doctor was thinking of changing the Neurontin to Lyrica, but I am concerned because I am prone to developing akathasia (a movement disorder) which Lyrica can induce. Therefore, it is a "catch 22" for me!
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Avatar universal
Have you had your serum ferritin checked?  Because if low iron is contributing to your rls, then no amount of dopamine agonist or anything else except getting those iron levels up is going to help.  The iron thing turned out to be the main contributor to my rls.  I still get the rls from time to time, especially if I have to take antihistamines.  But the problem is a lot more managable, since my iron levels are within the normal range.

Since I am only getting rls occasionally, I use a Standard Process remedy called Cataplex F, and it is like a miracle drug.  Stops the attack in its tracks.  But I don't know if there would be adverse consequences to taking it every night or for a long period of time.  It has a lot of iodine in it, and you can't take unlimited amounts of iodine.

Good luck, you two.  I know how it is.
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Avatar universal
hello I am new here too. Im some what familiar with RLS as we have a hate hate relationship. I take the generic form of Requip .which is Ropineral. if I spelled that right.I find that a real hot bath will sometimes work  I mean hot water. Its odd that yours is in the day.most times it worse at night. I have been reading  and I believe it has something to do with nerve endings.and thats what it feels like.like every nerve in your legs is stimulated to the point where it tightens up and twitches on its on. Also  its nasty, but have you tried tonic water.It has Quinine in it  and that can help..although its a small dose of the drug, a drug that they dont use anymore  I don't think.  I wonder though is there anything wrong with your back that  could cause  poor circulation or pinched nerves anything like that.
Your drugs I dont  know about Depakote or Neurotin., but  I dont believe it could be any of the others
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