hi, I am new here. I am suffering from severe restless leg syndrome which renders me sleepless every night. I have tried a numerous medications including xanax, neurontine, trizodone, klonopin---etc to no avail. As my last straw I want to try Lyrica which belongs to the same family as Neurontin. Since Neurontin has lost effect on me do you think Lyrica will help me? If Lyrica fails I would have to resort to Methadone which I am very reluctant right now. Please give me advice if someone has experienced on the two medications. Thanks, Being desperate and close to suicide.
Hi
I am sorry to hear you have such a difficult time with this. Most of us understand how bad lack of sleep can make you feel.
I had a bad dose of RLS for about 50 years. It became serious about 10 years ago and I quickly became intolerant of the usual pharmaceutical drugs. In the last few years I have been much better because I have been following a diet developed by Monash University for people with irritable bowel syndrome. There appears to be something IBS and RLS have in common. It works for me and I know it works for some other people but I can't be sure if it will work for everyone.
You will find many reference to this in this forum. Its called a FODMAP diet. It has been adopted for IBS by medical organisations all over the world. I suggest you work with your doctor and a dietician. If your doctor is sceptical and says not to try the FODMAP diet at least find a dietician who will help. Its quite hard work at first but there are several places on the WWW that publish lists of foods that you can eat. My advice is to keep a food diary and be absolutely strict on yourself. As you will see this diet is a starting point and you gradually re-introduce foods to find the ones that are upsetting you.
There are also food supplements like iron and magnesium that many people find very helpful.
Read about it in many conversations in this forum including the top of the list "things I have tried and how they worked."
If you want any help please ask and I will do what I can. What country are you in?
Good Luck
Graham
Hi, thanks for your prompt reply. Unfortunately I am not able to adopt this wonderful diet because I have a jejunostomy via which I am getting all my nutrition this way. I am not able to have any oral intake but water. I have had restless leg syndrome since my 40's but it had been well managed without any pharmarceutical drugs until I came down with severe stomach neuralgia last year and lost almost 30 Ibs and underwent a surgery to insert a jenuostomy tube to my small intestine to bypass the stomach. Two months after the surgery, I developed the exacerbation of the restless leg symptoms. Right now, I have exhausted all the pharmaceutical drugs except dopaminergic agonist which I hesitatle to take for fear of augmentation. I only hope for the Lyrica to work so I don't have to resort to opioid drugs such as Methadone althought I have heard it is a very effective drug to relieve the symptoms. The restless leg problem don't allow me to rest which I need it most right now becuase of my present physical condition. Thanks for your info. By the way I am located in the USA, Los Angles area and how about you?
Hi, by the way are you familiar with the Methadone? Or can anyone who has used it on the resless leg syndrome with any success share the experiences with me? Thanks.
I msut catch a plane soon and I'll be away for a couple odf weeks.
Just a thought I had.
I dont know how your "food" is manufactured but perhaps it contains stuff that is not FODMAP friendly and those who make it might be able to adjust that easily.
There are people on this forum who have had releif by taking some forms of iron, magnesium and/or vitaminD. Your doctor or specialist might be able to experiment with some of these for you. Search this forum for posts by a person callleed Udon and some others who seem very knowlegable on these. The iron and Mg need to be in a form that can pass the blood brain Barrier to really work.
I got some relief from iron but the dose I was taking was too large for my long term health according to my doctor. But it was a normal form of iron - see theposts by Udon and talk to your experts.
Good Luck
Graham
No experience with Methadone
My daughter also has rRLS and she rubs her legs with a magnesium cream I will get the details. She has a mild dose of RLS and it works very quickly.
Surely it's better to try a dopamine agonist, ropinirole tablets or rotigotine patches, if your RLS is as severe as you say.
I thought it was more usual to go to things like those you've been trying, painkillers and tranquillizers, when the agonists start failing. Neurontin (gabapentin) didn't work for me, so I've always suspected pregabalin (Lyrica) would not either – my doctor more or less ignored it when I mentioned it to him.
Have you had blood tests to check your iron stores and related factors. It's supposed to be the first thing to get done.
You might indeed like to look into supplementing with iron and vitamin D, making sure that if it's a course you follow, you keep other things in balance too. Threads here, including those between Udon, myself and others, do contain a lot of that information – I'm still not sure it's entirely extensive.
I can also believe the compression devices described in other threads might give relief. Obviously you can't walk about with them much, but one might at least save you from contemplating suicide whenever you sit or lie down.
Everything you've been taking only masks the problem and not well at that.
I am 78, have had RLS all my life, even as a child. The so-called ADHD in kids is really RLS. If only the medical profession would wake up and smell the lack of dopamine. So after 50 years of research what I've found is that the problem is all about dopamine. It's all about brain chemistry and neurons. Magnesium, iron, and all the rest of it won't make a dent in a condition as intense as yours. You need a dopamine agonist and the best one without question is ropinirole. Sounds like you need two each day, one at 2mg miday, and 8mg mid evening. These are not drugs, they replace what your body is lacking. Your doctor should be alerted to this. Try it, if it doesn't work your problem has been mis-diagnosed. Get ready because as you age the sensation will move into the spinal column more than in your leg or legs.
Also a word of caution. Read the side effects carefully; you will be amazed. I finally discovered ropinirole only after moving to France. it was not initially available in the USA. Now it is. Good luck.
hi rondre
i have been on ropinorole fpr 5 years and presently take 3 x 1mg at 6pm, 10pm and 3am. this is ok so far but i was curious about your comment on side effects?
Thanks everyone for your inputs.
In the past three months since the exacerbation of my resltess leg syndrome, I probably have tried everything except the opiod and dopaminergic agonist, even the natural therapies such as flowtron compression device (the hospital kind), near-infrared light therapy none of them would relieve my symptoms. I have heard many negative sides of dopamine agonist such as augmentation. For patients on these medication have to up the doses continuously in order to remain symptom- free. It is the augmentation I am most concerned about. My last resort probably is Methadone, the social stigma it carries concerns me too. So, right now, I really don't know whch way to go, I am still in the process of finding a specialist who can help me. The doctors including my primary physician and the neurologist are very ignorant about this ailment. By the way, I have tried magnesium, iron bisclycinate and vitamin D3 5000 U per day to no avail. I agree with you that the lack of dopamin in the brain or depleted or imbalanced neurotransmitters are to be blamed. In the past year, due to severe stomach neuralgia, I have been on only chicken broth daily for 4 months and lost almost 30 Ibs. The malnutrition which depleted all my neurotransmitters, I learned this also from online somewhere. So how to replenish my depleted dopamine is a key which I wish I could be helped this way. Thanks.
Some agonists do cause augmentation, synimet for one, but if ropinirole causes augmentation it must take a very, very long time. I have been taking it for about 12 years and have not needed to increase my dosage.
If your fear of augmentation is preventing you from taking ropinirole you probably have more issues than RLS. It is also time for you to change your medical advisors; they are unprepared and uninformed to perform
their duties to their patients. As for the side effects just read the notice accompanying he product. Two of them couldn't be more correct;
gambling and sexual drive/increased libido.
It is very encouraging to know your positive experience with ropinirole. By the way how much dosage you are on and how severe were your symptoms the time when your started the med?
Hi Zu. I'm not sure what time of day you took the iron but for me the iron bis-glycinate will only work right when i take it or rather an hour later and lasts me thru the night. I would never dream of taking the bis-glycinate in the morning when my RLS begins at night. Would you take an aspirin in the morning when you get headaches at night? Iron only relieves the RLS when it is unbound in your bloodstream. As long as you have it at home give it one more shot by trying one or two capsules one hour before bed on an empty stomach and hours away from other meds and supplements. I will say to you what I say to everyone else, I guarantee it will provide a good amount of relief for the night. Please let me know how it goes.
Are you taking any drugs that might be making your RLS worse such as antihistamines, antidepressants, anti nausea, calcium channel blockers or melatonin or sugar substitutes? Maybe google SIBO and see if this could be you?
How are you doing these days? Any changes in meds or symptoms?
No real change in my RLS. However, I now have a problem with my left eye. I thought it was probably photic maculopathy after two hours of gardening in very bright sunlight, but all afternoon Monday at the Manchester Royal Eye Hospital led to a possible diagnosis of choroidal neovascularization. I've to have more tests.
Iron is only thought to be a problem with eyes when it's diabetes related, I believe (and my blood tests showed me diabetes clear). Vitamin D seems to be thought generally good for eyes. Zinc is reported to have varying effects.
Until I know what the problem is with my eye and how supplementation might affect it, I'm feeling strongly I should go back to normal daily intake levels for these things.
Well with RLS no news is good news. I decided to order anew form of iron just for grins. It's an expensive heme iron. It's supposed to be one of the most bio-available forms of iron. Be well
Hi, Zu, so this is what I find interesting, while you were essentially fasting and lost 30lbs your RLS was at baseline, right? Then after your stomach was bypassed and I assume you begun proper nutrition your RLS worsened? Supposedly fasting and or consistently undereating will upregulate dopamine receptors...eventually. Sounds like that may have happened in your case, oddly enough. Could you have some type of infection going on, SIBO or otherwise? How's your b12 and iron levels? Will your doctor allow you to put two iron patches on at night? Once you respond we'll do some more detective work on you, ok? In desperation, I've heard of people falling asleep bent over an ottoman and/or with music headphones on. Even white noise is supposed to help with RLS - like the hum of a fan. Music/white noise supposedly causes the release of dopamine. Not to be rude but orgasm is also supposed to be an RLS reliever because of the release of endorphins including dopamine. Now to google those patches...
Hi, Udon, thanks for your reply, You have brought up a very interesting point about the fasting thing, Yes, actually i have been puzzled about this. During those 4 months of not eating anything about 2 cups of chicken broth daily, I never experienced a single sleepless night, my restless legs symptoms were not bad at all, not until 2 months after I resumed proper nutrition, the symptoms all of sudden was out of control. If my fasting or undereating has upregulated dopamine receptors then why the symptoms became out of control once I resume proper nutrition? The dopamine receptors should be in better shape, right? I am puzzled. I have been in a very good physical health until this stomach neuralgia, it is a nerve thing, and I have always
been taking probiotics and don't think I have any issue with SIBO or any infection going on. My B12 is very good and my serum ferritin is 70. I understand that despite the normal serum level, we resless leg sufferers
have an anemic brain. I bought the iron plus transdermal patch and have
been using it in the past two weeks instead of the oral one knowing the
transdermal patch have better absorption rate. By the way you can google
iron plus transdermal patch, I don't know if I can write the name of the
company or not. I will try the white noise thing tonight, I have downloaded the white noise from youtube. Thanks for all the good info. Keep up with good work.
Oh, I forgot to mention that whenever I am watching a very good movie with intense focus, then my resltess leg symptoms subsided. Sometimes, when I am in such an agony at night, I found out watching a very good movie will spare me with the crazy feeling of my legs but of course I am still sleepless all night. haha