Just to let everyone know, I am no doctor.
I want everyone to know about the drug that saved me and my life, but apparently Nadia here doesn't think I should tell anyone about my story, and she apparently is "immature" to think that I am forcing this drug onto anyone, ask your doctors, you won't believe the relief of Neurontin. All the Parkinsons meds have some pretty bad side effects, Neurontin has none of those, just ask your doctor, or do your own research.
That is all I am saying, happy sleeping !!
Please read below:
From: sardsy75
To: miamoss
Posted: Thu Apr 15, 2004 5:56 pm
Subject: Re Cure postings
Hi Maria
Just a small "heads up". Please don't go around all the RLS boards saying that you've found "A Cure". You haven't. You've simply found something that works for you at this point in time.
There are a lot of other RLS sufferes out there who would jump down your throat, literally if you'd posted that in some of the other RLS support groups out there.
Not everyone can use Neurontin and not all of us have had access to it yet.
To keep it safe draw on your experiences with Neurontin and use it to advise and help others. It's not the only drug on the market for RLS; for example i'm on 2 different parkinsons meds, an anti-d, and a sedative and my legs are out of control; or should I say, my brain is out of control.
Don't take any of that the wrong way!
Take care
Nadia
To: sardsy75
From: miamoss
Posted: Thu Apr 15, 2004 8:01 pm
Subject: Re: Re Cure postings
Nadia,
Respectively.................I do not need your small "heads up" advice.
Please do not tell me what I can/or should not post. These boards are for everyone (not just you). If I feel I want to post something that has saved my life and that might help others, then so be it. It is up to them to talk to their doctors (as I stated in all of my posts) and for them to do their own research with their doctors to find out more about Neurontin. I made it very clear in my posts that I am no doctor. And Neurontin is available to everyone who wants to try it - it has worked for every single person I have told to check it out, and that is over 40 people now in the past 2-3 years.
Thanks for your advice, but I don't need it.
Now if you will excuse me I am studying for my final exams at college this week,
Good day.
Neurontin
We all need helpful advice
I will probably regret it but let me comment on this disagreement expressed above. 
In my humble opinion and based on a life-long experience I would say you both mean well and you are both right to a certain extent.
Maria, I understand your enthusiasm. You and your doctor found something, an anticonvulsant, neurontin (gabapentin), that works for you. Great!
Neurontin (or anticonvulsants in general) is not a first choice of treatment for RLS. But they are well known and recognized as an alternative treatment for the disorder. This particular one, gabapentin is the first choice among anticonvulsants and has been found useful in therapy for those RLS sufferers who experience pain as well as paresthesias.
However, when you write that "I found a cure for RLS" then you are vying for the Nobel price. Since it clearly cannot be true (in general), it will rub people the wrong way. Emotions and enthusiasm are great but the imprecision they lead to cannot be afforded in the practice of medicine (Yes, I know you are not a doctor).
I found that another anticonvulsant (which is not even listed among the anticonvulsants in the exhaustive compilation of the California group), Topamax, works for me. The nice thing about that one is that the dosage is small, only 25 mg as compared to several hundreds of milligrams of Neurontin. Being nice, however, is a subjective opinion. I am still reserving a final, hopefully more objective opinion until I research the situation a bit more.
BTW, if I may correct a mistake in your posts: you are consistently using the abbreviation "ml" which means milliliter (volume) for milligram (mass). That may lead to confusion.
Nadia, I know you well enough to believe that you also meant well. However, it is difficult to be diplomatic when one "stretches the bejesus out of one's leg" after sleeping only thee hours even though you tried.
I hope that I succeeded putting things in perspective. And it is so easy to be misunderstood it is not even funny.
Let us fight our common enemy: insomnia!
In my humble opinion and based on a life-long experience I would say you both mean well and you are both right to a certain extent.
Maria, I understand your enthusiasm. You and your doctor found something, an anticonvulsant, neurontin (gabapentin), that works for you. Great!
Neurontin (or anticonvulsants in general) is not a first choice of treatment for RLS. But they are well known and recognized as an alternative treatment for the disorder. This particular one, gabapentin is the first choice among anticonvulsants and has been found useful in therapy for those RLS sufferers who experience pain as well as paresthesias.
However, when you write that "I found a cure for RLS" then you are vying for the Nobel price. Since it clearly cannot be true (in general), it will rub people the wrong way. Emotions and enthusiasm are great but the imprecision they lead to cannot be afforded in the practice of medicine (Yes, I know you are not a doctor).
I found that another anticonvulsant (which is not even listed among the anticonvulsants in the exhaustive compilation of the California group), Topamax, works for me. The nice thing about that one is that the dosage is small, only 25 mg as compared to several hundreds of milligrams of Neurontin. Being nice, however, is a subjective opinion. I am still reserving a final, hopefully more objective opinion until I research the situation a bit more.
BTW, if I may correct a mistake in your posts: you are consistently using the abbreviation "ml" which means milliliter (volume) for milligram (mass). That may lead to confusion.
Nadia, I know you well enough to believe that you also meant well. However, it is difficult to be diplomatic when one "stretches the bejesus out of one's leg" after sleeping only thee hours even though you tried.
I hope that I succeeded putting things in perspective. And it is so easy to be misunderstood it is not even funny.
Let us fight our common enemy: insomnia!
Jumpy Owl
Okay
As of this point, I totally respect both of your opinions. And the word "cure" could be a bit confusing. It's a "cure" to me because I do not suffer ANYMORE AT ALL.
Now, in stating that, let me ask you the most important question of all have either of you ever tried Neurontin??
I didn't think so, don't knock a drug down based on what you've "Heard" about it until you try it.
Neurontin is not the "first choice" for RLS because most people have no clue to it's wonderful benefits, and lack of "side effects".
Yes you are right, I take a lot of mg (milligrams), but you must do your research. Neurontin is normally giving at an average at 1200-2400 mg for most conditions. I am only taking 600-900mg a day. Considering other dosages given for hydrocodone at 500, I do not think it's a lot for the relief it brings. I have had heard of NO long term side effects either in taking Neurontin ie: damage to liver/kidneys/organs etc.
So, in saying all of this. I am glad you all found your meds that work for you, that's wonderful. But in my 32 years nothing worked until I stumbled across Neurontin. It is "MY" cure for "MY" rls and at least I have made others aware of it so they can go to their doctors and use their own judgement.,
Respectufully,
Maria (Mia)
Now, in stating that, let me ask you the most important question of all have either of you ever tried Neurontin??
I didn't think so, don't knock a drug down based on what you've "Heard" about it until you try it.
Neurontin is not the "first choice" for RLS because most people have no clue to it's wonderful benefits, and lack of "side effects".
Yes you are right, I take a lot of mg (milligrams), but you must do your research. Neurontin is normally giving at an average at 1200-2400 mg for most conditions. I am only taking 600-900mg a day. Considering other dosages given for hydrocodone at 500, I do not think it's a lot for the relief it brings. I have had heard of NO long term side effects either in taking Neurontin ie: damage to liver/kidneys/organs etc.
So, in saying all of this. I am glad you all found your meds that work for you, that's wonderful. But in my 32 years nothing worked until I stumbled across Neurontin. It is "MY" cure for "MY" rls and at least I have made others aware of it so they can go to their doctors and use their own judgement.,
Respectufully,
Maria (Mia)
Hi, Maria:
I will try to reach you once more because I am afraid we are not communicating. Then I will give up. I wrote:
Now, does this sound like I am doubting that you found a "cure" for your affliction?
Then I wrote:
What I am trying to state here is that while in general (trying to look at the whole picture) doctors experienced in treating RLS do not usually start with an anticonvulsant, Neurontin (gabapentin) IS THE FIRST CHOICE OF DRUG when the typical RLS symptoms are associated with pain (like in my case).
I do not usually get accused of not doing my share of research. Again a misunderstanding. I was comparing (as a point of interest and not putting Neurontin down) Neurontin to Topamax. (I never meant to say that you are taking too high doses of Neurontin.) I found it interesting that Topamax has a pharmacological effect at such a small (mass) dose.
Since this is only my second visit to my doctor, he will probably prescribe Neurontin (you are 30 years of experience ahead of me) for me. If so, I will conscientiously take it and objectively report on its effect.
Just curious, Maria. What is your major in college?
I will try to reach you once more because I am afraid we are not communicating. Then I will give up. I wrote:
Maria, I understand your enthusiasm. You and your doctor found something, an anticonvulsant, neurontin (gabapentin), that works for you. Great!
Now, does this sound like I am doubting that you found a "cure" for your affliction?
Then I wrote:
Neurontin (or anticonvulsants in general) is not a first choice of treatment for RLS. But they are well known and recognized as an alternative treatment for the disorder. This particular one, gabapentin is the first choice among anticonvulsants and has been found useful in therapy for those RLS sufferers who experience pain as well as paresthesias.
What I am trying to state here is that while in general (trying to look at the whole picture) doctors experienced in treating RLS do not usually start with an anticonvulsant, Neurontin (gabapentin) IS THE FIRST CHOICE OF DRUG when the typical RLS symptoms are associated with pain (like in my case).
I do not usually get accused of not doing my share of research. Again a misunderstanding. I was comparing (as a point of interest and not putting Neurontin down) Neurontin to Topamax. (I never meant to say that you are taking too high doses of Neurontin.) I found it interesting that Topamax has a pharmacological effect at such a small (mass) dose.
Since this is only my second visit to my doctor, he will probably prescribe Neurontin (you are 30 years of experience ahead of me) for me. If so, I will conscientiously take it and objectively report on its effect.
Just curious, Maria. What is your major in college?
Jumpy Owl
I am going to be a Clinical Psychologist
There is no need for you to explain yourself to me. I'm not misunderstanding you at all. I understand what you are saying. Writing over a computer doesn't give justice to real character and actual opinions that can be expressed better in person, so maybe you misunderstood me.
I'm glad you found something other than Neurontin that works.
I have been a member of the RLS Organization since about 1996-97. I have kept up-to-date on any/all treatments as best as I can. I have been to 3 specialist in RLS, and to 2 different sleep clinic studies. I am pretty informed, or as best that I feel I can be.
One friend I met on this website back in 1999 commited suicide due to RLS. I just recently found out about Neurontin 2-3 years ago else I would've let him know. He tried everything there is, but not Neurontin.
Maria
I'm glad you found something other than Neurontin that works.
I have been a member of the RLS Organization since about 1996-97. I have kept up-to-date on any/all treatments as best as I can. I have been to 3 specialist in RLS, and to 2 different sleep clinic studies. I am pretty informed, or as best that I feel I can be.
One friend I met on this website back in 1999 commited suicide due to RLS. I just recently found out about Neurontin 2-3 years ago else I would've let him know. He tried everything there is, but not Neurontin.
Maria
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I will probably regret getting in the middle of this but as I am also on Neurontin I feel justified in responding. First, I only think that you were asked what your major is because the people here are very caring and supportive. If you were a major in cow poop it would be okay with everyone and we would probably ask you questions about it. Please don't think we are trying to pick a fight. Just curious. It's great you have such high aspirations. Good luck. But it concerns me with the tone of the writings. I hope I am just reading into it the wrong things. So enough about that. Each person is different, we all agree to that. I am so glad you have found something that works for you and you are right to tell others what works for you. But Neurontin is not a cure for me. It works most of the time along with other medicines I take. But not always. Each of us has different symptoms that different meds help or make worse. It helps us to hear about what works, what doesn't and any ways we can support each other. That is what this site is all about, SUPPORT. If any of us comes in with a chip on their shoulder or if any of us knock another person down, then this site won't work. So far, that hasn't happened and I am very thankful for all the new friends I have found and the caring that keeps coming back to me each time I visit. Please, let's keep it that way. Good luck to all and sweet dreams. Ruby
Okay
Okay, I really am too busy for this - so if everyone can just move past this I would appreciate it. Yes I do feel like you are butting in where you don't belong, but that's besides the point. I am a very supportive and giving person, I take care of children with cancer every week for free - because I care and want to make a difference in peoples lives. Which I why I chose to be a clinical Psychologist. Everyone who has responded to me seems to really be taking everything way out of proportion here. Everyone just needs to calm down and move on. I found Neurontin, It works, I'm cured of my RLS now. Everyone knows this now - so please move on. I'm way too busy for this mess. I'm normally a great debate person, but considering finals are coming up at college, and I have my baby daughter to take care of, on top of volunteering at the Children's hospital, and being a single mother, I just don't have the time nor the patience for this right now.
So, in saying that, please Do not post regarding this topic again, I would greatly appreciate it. Find something or someone else to debate with please, thanks.
Happy Sleeping !
So, in saying that, please Do not post regarding this topic again, I would greatly appreciate it. Find something or someone else to debate with please, thanks.
Happy Sleeping !
The final word
"Immature" was when you decided to post a private message onto a public forum.
Watch who you insult; and watch what you write.
1. There is NO cure....just relief
2. Don't make promises you can't keep (that's the first one)
10. If you really didn't have the time or the patience I think you should refer to my very first sentence in this post again...
11. I wasn't going to respond at all....until you gave the order to "not post regarding this topic again"....my hands were rather sore from sitting on them (sorry guys )
This is MY final word on this topic. If you wish to respond, please do so privately.....
Now, if you'll excuse me, seeing as we've just found out that pramipexole (mirapex) is not on the "soon to be available in Australia list", and that it's the drug which my GP & Neuro are hoping might actually work for me and some fellow Aussie chronic RLS sufferers, i'd like to get back to scouring the internet for a possible supplier.
Watch who you insult; and watch what you write.
Re: I FOUND A CURE FOR RLS
Miamoss wrote:
try it, I promise it works.
1. There is NO cure....just relief
2. Don't make promises you can't keep (that's the first one)
miamoss wrote:From: sardsy75
To: miamoss
Posted: Thu Apr 15, 2004 5:56 pm
Subject: Re Cure postings
Please don't go around all the RLS boards saying that you've found "A Cure". You haven't. You've simply found something that works for you at this point in time.
...draw on your experiences with Neurontin and use it to advise and help others.
3. There is NO CURE – As I stated above, you have simply found something that works for you - enjoy the freedom and relief by all means!!
4. I did NOT at any stage tell you to NOT share your experiences.miamoss wrote:Please read below:
5. Please refer to my very first sentence in this post!miamoss wrote:ask your doctors, you won't believe the relief of Neurontin. All the Parkinsons meds have some pretty bad side effects, Neurontin has none of those
6. Consider yourself:
a) priviledged to find a drug which has not burdened you with any side-effects
b) damn priviledged that you don't have such a chronic form of RLS that a mixture of drugs (not just parkinson's) is the only hope of some relief and the side effects are something you just have to deal with in order to get some relief.miamoss wrote:have either of you ever tried Neurontin??
I didn't think so, don't knock a drug down based on what you've "Heard" about it until you try it.
Neurontin is not the "first choice" for RLS because most people have no clue to it's wonderful benefits, and lack of "side effects".
7. No I have not "tried" Neruontin because:
a) Neither my GP or Neurologist have decided that it’s worth prescribing in my case (surprise, surprise, I DO "talk" to my doctors)
b) I do not have neuropathic pain associated with my RLS, which is what Neurontin is commonly used to treat
8. If you can find a post of mine ANYWHERE, where i've knocked a drug down based on "what i've heard", then i'll be a monkey's uncle and you can slap me silly with a frozen trout!! If I have not used a drug myself I don't advise on it.
9. You're bordering on making promises again...miamoss wrote: I just don't have the time nor the patience for this right now.
So, in saying that, please Do not post regarding this topic again, I would greatly appreciate it. Find something or someone else to debate with please, thanks.
10. If you really didn't have the time or the patience I think you should refer to my very first sentence in this post again...
11. I wasn't going to respond at all....until you gave the order to "not post regarding this topic again"....my hands were rather sore from sitting on them (sorry guys
)
This is MY final word on this topic. If you wish to respond, please do so privately.....
Now, if you'll excuse me, seeing as we've just found out that pramipexole (mirapex) is not on the "soon to be available in Australia list", and that it's the drug which my GP & Neuro are hoping might actually work for me and some fellow Aussie chronic RLS sufferers, i'd like to get back to scouring the internet for a possible supplier.
Last edited by sardsy75 on Fri Jun 11, 2004 10:34 am, edited 1 time in total.
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
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Guest
Sweetheart,
You need to get a life, you have way too much time on your hands honey.
nothing that you can say or do will or could ever offend me, if that's what you were trying to do - I don't know if you were or not, I didn't even read half of what you just posted, because you're are too predictable.
Now, if you will excuse me I am going riding on my motorcycle today.
I will not be posting anymore regarding this subject, so have fun fighting with someone else. I have better things to do. Move on with your lives people !!
Bye Love
Maria
You need to get a life, you have way too much time on your hands honey.
nothing that you can say or do will or could ever offend me, if that's what you were trying to do - I don't know if you were or not, I didn't even read half of what you just posted, because you're are too predictable.
Now, if you will excuse me I am going riding on my motorcycle today.
I will not be posting anymore regarding this subject, so have fun fighting with someone else. I have better things to do. Move on with your lives people !!
Bye Love
Maria
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Guest
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NightMan
Neurontin
I'll keep this brief. I tried Neurontin within the last week. For me, it worked terribly. It did not suppress the RLS symptoms; it brought them on. Worse, it caused weird, near-hallucinigenic side-effects in my brain which made sleeping impossible. Finally, it brought on a faint nauseous feeling in my stomach.
Neurontin is not a cure. It is simply another drug that works well for some folks and does not work at all for others.
Nuff said.
Neurontin is not a cure. It is simply another drug that works well for some folks and does not work at all for others.
Nuff said.
Neurontin
This is not about the disagreement going on. I just wanted to share an experience that happened today. I went to see my psychiatrist today,she is treating me for depression and anxiety. I mentioned for the first time (to any doctor) about what I believe to be an RLS problem. She was very knowledgable on the subject and right off the bat prescribed Neurontin. I am anxious to try it as she said it could have a lot to do with my depression and anxiety. Her opinion being, if you are up all night battling with your legs, it is bound to affect your mental health.
Jumpy I was a bit sorry for you though, since it sounds like you had negative affects. I know each individual is different and I hope it works for me as well as it did for Maria. I only hope you (jumpyowl) can get some relief soon.
BTW, I asked about Valerian also,. She said it can cause edgyness(sp)
in some people. I'm wondering if this discussion today has anything to do with Valerian.....Just a thought!!!!!!
Jumpy I was a bit sorry for you though, since it sounds like you had negative affects. I know each individual is different and I hope it works for me as well as it did for Maria. I only hope you (jumpyowl) can get some relief soon.
BTW, I asked about Valerian also,. She said it can cause edgyness(sp)
in some people. I'm wondering if this discussion today has anything to do with Valerian.....Just a thought!!!!!!