Will Lyrica help me I failed Neurontin?

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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.

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  • Posted

    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

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    • Posted

      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?
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    • Posted

      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. 
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    • Posted

      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

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    • Posted

      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.

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  • Posted

    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.

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    • Posted

      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.

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    • Posted

      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
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  • Posted

    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. 

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    • Posted

      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?

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    • Posted

      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.

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    • Posted

      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.
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    • Posted

      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? 
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    • Posted

      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...
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    • Posted

      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.  

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    • Posted

      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 
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    • Posted

      Zu, it sounds to me like you have standard issue RLS.  RLS tends to worsen with age but you went from 0 to 100 in the span of12month.  Any aspartame or sucralose in the nutrition you are giving yourself.  What othe meds if any r u taking? Two things I would do in the not too distant future before methadone and that is iron bisglycinate in pill form and a breath test for SIBO. Do you have either extreme diareahh or constipation or headaches or fatigue (who doesn't?)?  These are signs of  SIBO.  It's the only thing I can think of that happened in those12 months.  Or just a very unhappy gut microbiome because of your new diet.  By all rights the iron should help so I'm really  wondering about those patchs???
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    • Posted

      All of my posts are being moderated and then disappear.  I'm done with the forum.  I recommend trying the iron in pill form and getting a breath test for the sibo.  Make sure your nutrition doesn't contain aspartame or sucralose.
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    • Posted

      Hi, Udon, what you mean by you are done with the forum?  Can I still communicate with you on this forum?  You are a great contributor for this forum I hate to lose you.  I can't take any pills, only administer to my small intestine therefore, I use it in the skin pacth form.  Actually transdermal form offers benefits over traditional pill because it goes to blood stream while bypassing the liver metabolic activity.  I will try to make an appointments to have my test done to rule out the small interstitial overgrowth problem.  Thanks for your advice.  By the way where are you located?  
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    • Posted

      I type a long reply to you and it gets "moderated."  Or the forum's server crashes.  Makes me crazier than the RLS.  I live in U.S.  So how have you been sleeping past few days?  Do you get any sleep at all?  How is your health otherwise - any other issues - no matter how small?  Is your RLS just at night or all day long?  What exacty does your nutrition formula consist of?  I worry about the patch because I know if not placed right or if you're putting it on an area with more fat - such as hips, butt, it may not get absorbed.  When I take iron I open up the capsule and pour it in water and drink down.  The stuff really does not dissolve well but I drink it down anyways.  You have what I call standard issue RLS.  It was better when you were essentially fasting, distraction works - all things that point to RLS rather than say peripheral neuropathy.  The iron in all rights should work.  Can you open up the iron capsule (were you to give it a go) and pour into water and feed it to yourself the way you do any other food item?  Only you would have to give it to yourself by itself and of course at night.  If the Patch was a pharmaceutical grade one I wouldn't question it.  Right now there is a company trying to get FDA approval for a highly specialized transdermal iron patch that you put on once a week and it is for anemia not RLS.  I would have confidence in a product like that.  Have your iron stores been tested since your RLS got bad?  The other thing is you have to have some amount of copper and zinc in order to process iron. Not a ton but some.  The problem is you're suffering right now and need help this second.  So even though you should probably have the hydrogen breath test it's not going to provide you with relief this second.    Anyways I await your answers.

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Let me try again.  My RLS belongs to the severe category because I am havaing the symptoms 7 days a week, my legs would act up once I hit the bed every night albeit i only have aching and uncomfortable feelings on my lower legs during the day.  I have been so deprived fo sleep the past three months especially the past week I sleep only for an hour or so therefore I went to the urgent care yesterday after trying to get an appointment with my neurologist without any success.  Fortunately I met a compassionate doctor who prescribed the medication I requested,  Lyrica and Ambien. I am goint to try it and hope it will work before resorting to opoids.  Yes I went from 0 to 100 in the span of 3 months.  I've had RLS for almost 15 years during that time it was managed without any pharmaceucals.  I sometimes went without any symptoms for years.  Even when I had any which could be taken care by meditation.  I'd always been very healthy until I'd been taking a whole food vitamin with cayenne pepper in it for 8 months without knowledge.  It was late to find out until my stomch was very damaged to the point I had to undergo a jejunostomy surgery.  Now I have just switched from commercial formula to a whole food formuls which don't have any ingredients disagreeable to my RLS.  The iron patch was made by a credible company.  I follow their instruction as here to apply to my skin.  The pill form is not feasible in my case due to the 22 hour feed.  I will get the copper and zinc to supplement with iron thanks to your info.  I don't think I have the symptoms you descirb
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    • Posted

      I don't have the symptoms you described associated with SIBO but I do suffer with occasional constipation though.  Tell you a good news, I finally got sufficient sleep last night with the help of Lyrica.  It did knock me out for nine hours that I happy with although I still have the symptoms once I woke up this morning.  I may take time for it to be effective.  I am keeping my fingers crossed.
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    • Posted

      Oh thank heavens.  I'm not a chemist but I think of those two drugs as being an excellent choice for a sleep deprived RLSer.  It will buy you a ton of time.  Now you can not only get tested for SIBO but if you haven't lately, I would have your iron levels checked and I guess b12.  Although I think you mentioned that your b12 was normal.  How about having your thyroid checked as well.  Cover all bases at your next appointment.  Like I said before, I truly believe that something changed during those three months that you went from 0 to 100.  Any drastic increases in weight?  I doubt it but I have to ask.
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    • Posted

      I've had my thyroid, B12 and ferritin checked not long ago, and they are within normal ranges. I did have surgery performed for jejunostomy in Nov, 2015, 6 months ago.  I read somewhere about malnutrition would deplete dopamine in the brain.  I had been fasting for almost 4 months and had all abnormal malnutrition indicators that time.  I am highly suspicious that malnutrition may play a very important role on my worsening RLS, but I don't know how to replenish the depleted neurotransmitters.  Some articles I've

      read on line about replenishing depleted neurotransmitters or imbalanced neurotransmitters using amino acids.  Have you heard about it?  I also read about some device called CP relief wand intended for pain relief but works well for RLS.  Have you or anyone heard about it?   

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