So I tried Neurontin 300mg 3 times a day for about 4 weeks, it did help with the RLS symptoms, I was actually sleeping about 6 hours a night and it felt wonderful!!
The problem was my mind was all over the place. I have had a hard time finishing thoughts and I have become more OCD. But the biggest problem was the 20# I have gained since starting the Neurontin, I have done nothing but eat and usually the thing my body/mind craved was sweets, mostly chocolate. Also the funny feeling in my ankles is starting to come back.
So since my regular primary care doc is now leaving the practice and going into emergency care I had to find another doc. I decided on a doctor about 40 miles from my home, but he has done extra research on RLS so I decided I would rather drive than be a learning tool for another doctor.
This new doctor has started me on Lyrica 75mg twice a day. He had me just stop the Neurontin and start the Lyrica which I did tonight.
So my question is has anybody tried the Lyrica and what kind of side effects did you have? I realize we all have different reactions to different meds but just wondering if it helped anybody and for how long. I go back to see the doctor in 2 weeks, I'm just hoping it doesn't start snowing too bad, I hate driving the highway in snowy weather!!
Pam
Off neurontin on lyrica
p, Have not tried Lyrica myself but know you will receive replies from others who have. My sister was on Lyrica (not for rls) but only for a brief time as, for her, the side effects (vision probs, coordination, and extreme sleepiness) were too overwhelming. I am on neurontin ( with relatively good results) but at some point Lyrica may, or may not, be in my future also. So, have a selfish interest in your progress. Please keep us posted. I am glad that you seem to have found more than a competent replacement for your doc. Best wishes, M.
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SquirmingSusan
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Hi Pam. Lots of us have tried both Neurontin and Lyrica, and there have been a few long discussions of the medications. They are very similar drugs, and when one is discussed, the other one tends to be discussed in the same thread as well. If you search the forum for either one, you'll find a lot of posts.
I've tried them both, and am currently taking Neurontin. It definitely helps me, and I don't notice the side effects much anymore. I also tried Lyrica twice - the first time I just couldn't stand the drowsiness, so I quit taking it after a week or so, and only made it to 25 mg. a day. I tried it again more recently, and it didn't make me drowsy at all, and I worked up to 50mg. It was helping a lot, but then it started making my hands swell. So back to the Neurontin. I may ask if I can increase my dose and take it more often, because not only does it help with my RLS, but it also seems to help with my mood. Go figure.
Weight gain can be a side effect of both medications.
I've tried them both, and am currently taking Neurontin. It definitely helps me, and I don't notice the side effects much anymore. I also tried Lyrica twice - the first time I just couldn't stand the drowsiness, so I quit taking it after a week or so, and only made it to 25 mg. a day. I tried it again more recently, and it didn't make me drowsy at all, and I worked up to 50mg. It was helping a lot, but then it started making my hands swell. So back to the Neurontin. I may ask if I can increase my dose and take it more often, because not only does it help with my RLS, but it also seems to help with my mood. Go figure.
Weight gain can be a side effect of both medications.
Susan
Pam, I too am interested how the Lyrica works out. I am on neurontin. S far, so good. Except in the day time it makes me very sleepy and have trouble staying focused. Not good for driving either. At night it is great - knocks me out cold. I do need a little narcotic in teh day time in addition to the neurontin to totally kill the creepy crawlies though.
Hey everbody that answered my questions about Lyrica, sorry it has taken so long to reply, between rls and holidays and work life got busy. I know it's been a long time coming but thanks for everything you said.
As for the Lyrica I had to go off it after a few weeks, besides my mind being all over the place and not being able to concentrate my legs started swelling so no more Lyrica for me.
I went to my doctor again and then he started me on Klonopin .5mg twice a day also changed my Adderall to Strattera 40mg once a day. The Klonopin didn't help so he increased the dose to 1 mg twice a day and I felt like a zombie woman, there was no pep in my voice or movements, so I cut it back to one at night and that seemed to help the rls and how I felt during the day. He increased that dose mid Dec. and no rls until about 2 weeks ago and then rls symptoms started coming back. So I started taking it twice a day again and it's not helping much so I guess I will be going back to see him soon. Also all the weight I gained switching all these meds isn't coming off so that doesn't help my mood much at all.
As for the Strattera I don't think that helps the adhd much at all, I did call my dr. about that and he increased the dose to 80mg a day and it still doesn't help so I need that to be changed also. I'm thinking about asking him about Ritalin, not sure if that will help the adhd either but it's worth a try, I need my mind back. Has anybody tried the Ritalin for adhd and did it make the rls worse?
I have also been thinking about asking to try Requip or Mirapex again. I did well on both of these drugs for about 6 months each time I tried them. But I augmented in Aug and really don't want to do that again. Has anybody had any luck with going back to Requip or Mirapex after augmenting? It's a scary thought but I want my life back to where it was before rls.
So I know I have rambled on, but I wanted to let you know how the drugs worked for me. Also any information concerning going back to Requip or Mirapex would be helpful. As any information about Ritalin would be nice.
Hope everybody is staying warm and cozy where ever you live, as for me I have 3' of snow in my yard now and calling for more snow, gotta love Michigan in the winter.
Pam
As for the Lyrica I had to go off it after a few weeks, besides my mind being all over the place and not being able to concentrate my legs started swelling so no more Lyrica for me.
I went to my doctor again and then he started me on Klonopin .5mg twice a day also changed my Adderall to Strattera 40mg once a day. The Klonopin didn't help so he increased the dose to 1 mg twice a day and I felt like a zombie woman, there was no pep in my voice or movements, so I cut it back to one at night and that seemed to help the rls and how I felt during the day. He increased that dose mid Dec. and no rls until about 2 weeks ago and then rls symptoms started coming back. So I started taking it twice a day again and it's not helping much so I guess I will be going back to see him soon. Also all the weight I gained switching all these meds isn't coming off so that doesn't help my mood much at all.
As for the Strattera I don't think that helps the adhd much at all, I did call my dr. about that and he increased the dose to 80mg a day and it still doesn't help so I need that to be changed also. I'm thinking about asking him about Ritalin, not sure if that will help the adhd either but it's worth a try, I need my mind back. Has anybody tried the Ritalin for adhd and did it make the rls worse?
I have also been thinking about asking to try Requip or Mirapex again. I did well on both of these drugs for about 6 months each time I tried them. But I augmented in Aug and really don't want to do that again. Has anybody had any luck with going back to Requip or Mirapex after augmenting? It's a scary thought but I want my life back to where it was before rls.
So I know I have rambled on, but I wanted to let you know how the drugs worked for me. Also any information concerning going back to Requip or Mirapex would be helpful. As any information about Ritalin would be nice.
Hope everybody is staying warm and cozy where ever you live, as for me I have 3' of snow in my yard now and calling for more snow, gotta love Michigan in the winter.
Pam
p, Forgive me if I don't remember your whole saga.... But, in reading your last post it seems that your doc has placed a lot of emphasis on the Klonopin. Generally speaking, Klonopin does not particularly help with the rls but, when used at bedtime, makes you sleepy enuf that you did not notice or are bothered by the rls. I'm sure the sleepiness aspects of the med make taking it during the daytime a bit of a chore if you cannot stay alert. Having said that, Klonopin certainly is a useful med. Can't comment on the adhd meds and how this all fits in. It may be that you will need to continue your search for a "cocktail" that works. I'm curious, or do not remember, were you on something additional (other than the adhd meds) while on the neurontin? I understand your hesitency about recycling thru any drugs that were not successful. I recycled back to neurontin after a bad 1st time experience but some far the second time has been a very steady help with my rls/plmd but only wish that it would also make me sleepy. In any event perhaps some combination of say a neurontin and a wee bit of the requip/mirapex may be helpful in some combination/dose. Finding that combination/dose is the trick as many here will attest. Other than that, a doctor willing to "work the algorithm" and perhaps think outside the box is our best offensive weapon in taming the beast. Hope I have not gone backwards or rehashed the obvious. You clearing are gaining knowledge and asking good questions. Hopefully you are getting feedback that will help you find the magic elixir that will work for you....... and you will!!!
Best wishes and luck
M.
Best wishes and luck
M.
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SquirmingSusan
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Hi Pam. I sure do know what you're talking about when you say you wonder if the dopamine agonists might work again for you. I have a stash of Mirapex around and I try it periodically, only to find that in a couple of days my legs start to feel like they're on fire.
But a lot of people do manage to go back on the DA's with success. They are great when they work for you. You'll only know when you try, though. At least if you start to have augmentation issues, you'll realize it more quickly.
As for ADD meds and RLS - some people find that the amphetamine ADD meds can actually help their RLS. And then sometimes they can make the RLS worse. Is there a reason why your doctor took you off Adderal and put you on Strattera? Was the Adderal not working? I think Ritalin works a lot like Adderal. Stratter, OTOH, is a norepinephrine reuptake inhibitor, which can help with pain, depression, and energy.
It's really hard to strike a balance between being able to sleep at night, and being able to stay awake during the day, isn't it?! I wish you the best with it.
But a lot of people do manage to go back on the DA's with success. They are great when they work for you. You'll only know when you try, though. At least if you start to have augmentation issues, you'll realize it more quickly.
As for ADD meds and RLS - some people find that the amphetamine ADD meds can actually help their RLS. And then sometimes they can make the RLS worse. Is there a reason why your doctor took you off Adderal and put you on Strattera? Was the Adderal not working? I think Ritalin works a lot like Adderal. Stratter, OTOH, is a norepinephrine reuptake inhibitor, which can help with pain, depression, and energy.
It's really hard to strike a balance between being able to sleep at night, and being able to stay awake during the day, isn't it?! I wish you the best with it.
Susan
Lyrica
i have RLS very bad all nite long! I'm fine during the day! I've been on Lyrica for about 1 year! And it works great! 75Mg at 6:00PM, another 75Mg at 11:00PM, bedtime. It stays in your system for about 5 or 6 hours, so sometimes i have to take a third (75Mg) at 4 or 5 in the morning! I also take 5Mg of Klonopin before i go to bed, which knocks me out right away! The only side affect that i have is, i put on weight and I'm tired during the day! I'm going to try nutrisystem to take off the weight i gained! My life is much better now, since i don't have RLS anymore! Theres a doctor near me with a radio show! He claims he cures RLS with a combination of Neurotransmitters,that he comes up with your needed dose form testing your urine, till he gets the right combo! Since, its not covered by insurance, i can't afford to see him right now! Although, when i had the extra money, he cured my back with ProShots(ProThearpy) Dr Alvin Stein, in Ft Lauderdale Fl. He is a genius! Arnie
Correction
Not ProShots but Prolo Shots and Prolo Therapy! also, the Neurotransmitters are different Amino Acids!
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SquirmingSusan
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Arnie, it does make sense that various conditions can be helped by amino acids that boost neurotransmitters. After all the causes of RLS, depression, chronic pain, etc. are imbalances in neurotransmitters. Thing is that I've personally never been helped by supplements like I've been helped by "real" medicine. 
And believe me I've tried.
And believe me I've tried.Susan
Susan, try to listen to a radio show called, No Bones About It, hosted by Dr. Alvin Stein. It's an AM radio show coming from South Florida! If you can't find it on your radio, he has Podcasts on the Internet of his show! He talks in detail about Neurotransmistters and curing all kinds of ailments including RLS. He claims since everyone is different! You need the right combination and the correct amount! using trial and error through urine testing! then he gives you the correct pill or pills as needed! Arnie
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SquirmingSusan
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https://www.neurorelief.com/index.php?option=com_content&task=section&id=10&Itemid=66
Here's a website about the new medical specialty of working with, and balancing, neurotransmitters. It's fascinating stuff (well, if you're a science major nerd like me, lol). There's one page about various neurotransmitters that lists them as "excitatory" (dopamine and norepinephrine are examples) "inhibitory" (seratonin and GABA as examples), and modulators or precursers. It talks about which amino acids are converted into which neurotransmitters - for example, the RLS sufferer's friend, tyrosine, is converted to both dopamine and norepinephrine... (It seem like it's also related to thyroid hormone as well, because I've read that supplementing with tyrosine helps with thyroid hormone levels).
The new medication that I'm on is a norepinephrine reuptake inhibitor, so it lets my brain soak longer in the norepinephrine that's already there. It has boosted my energy so much. But I have experienced "crashes" which have been resolved by taking tyrosine.
And all these years my friggin doctors have had me on SSRI's when I've gone in and complained of fatigue, fatigue, depression, and fatigue. We were boosting the WRONG neurotransmitters.
Here's a website about the new medical specialty of working with, and balancing, neurotransmitters. It's fascinating stuff (well, if you're a science major nerd like me, lol). There's one page about various neurotransmitters that lists them as "excitatory" (dopamine and norepinephrine are examples) "inhibitory" (seratonin and GABA as examples), and modulators or precursers. It talks about which amino acids are converted into which neurotransmitters - for example, the RLS sufferer's friend, tyrosine, is converted to both dopamine and norepinephrine... (It seem like it's also related to thyroid hormone as well, because I've read that supplementing with tyrosine helps with thyroid hormone levels).
The new medication that I'm on is a norepinephrine reuptake inhibitor, so it lets my brain soak longer in the norepinephrine that's already there. It has boosted my energy so much. But I have experienced "crashes" which have been resolved by taking tyrosine.
And all these years my friggin doctors have had me on SSRI's when I've gone in and complained of fatigue, fatigue, depression, and fatigue. We were boosting the WRONG neurotransmitters.
Susan
Theres a Ph.D. Dr. Vilarino-Guell a neuro scientist at the Mayo Clinic campus in Jacsonville, claims their getting close to pinpointing the culprit gene in RLS from a family of more then one generation who all or most have it! I don't know what happens after that! I try to be positive but i hope it's not mor drugs to fix the bad gene! Arnie
Lyrica
I have had RLS for over 12 years, severe enough that I need to take medicine every night, otherwise no sleep. I have tried many drugs over the years, include benzodiazapenes and dopamine agonists. My doctor has had me on Lyrica for several weeks and I am impressed with the results. I am sleeping well and I wake up with a clear head. I am told that I need to take a dose during the daytime to avoid experiencing a trough effect. So I am on 100 mg at night and 25 (soon to be 50) mg during the day. This drug is apparently also used for fibromylgia so it has the effect of relieving some aches and pains. So I find I not only have a good night's sleep but I feel better during the day. I am also taking 50 mg of Ambien and will be experienting soon with seeing if I still need this. So what I can say is that my preliminary experience with Lyrica is very favorable.
I have had a couple days this week where my recall seemed worse than normal. So I will be monitoring this to see if Lyrica might be causing it. Increased appetite is a problem I am having with all of them.
Richard
I have had a couple days this week where my recall seemed worse than normal. So I will be monitoring this to see if Lyrica might be causing it. Increased appetite is a problem I am having with all of them.
Richard