Self-diagnosed

[jumpyowl]

It was yesterday. I took my daughter to the nearest town which is still smaller than where Nadia lives (65,000). It was raining and I missed my contact being near lunch time. Being in a small town and being a garrulous old guy I learned from the male nurse of my daughter that the sleep doctor has a registered nurse as well as a physician's assistant, a guy by the name James, with whom I could discuss matters without an appointment.

A prelude to this, I searched Neurontin on the web and I found a write-up on a clinical trial where they were testing its effect on neuropathic pain.
There I found that they were warning patients not to double up on the dose when titrating the dose upward but spread the increase over the time interval of the day (neurontin does not have a long half life and it is als not metabolized by the body).

I reviewed my instructions Take 300 mg once every evening for a week. THEN double the dose to 600 mg and take it every evening. This actually meant that I was doubling the dose in the evening but next morning I also started to wean away myself from Neurontin because I did not take the next dose until 24 hours later! It would have made more sense and possibly less side effect if I would have taken 300 mg in the morning and 300 at night.

I did a bit of detective work. I checked with the lady who was supposed to phone in the prescription, I already read the doctor's garbled handnotes, and later I talked to the pharmacist. None of them analyzed it to the degree I had. Of course not.

Then afrer my daughter's visit I returned to the sleep clinic. Sure enough I managed to talk with James. Fortunately, I had the "Dr." prefix on my file (Ph.D), so I had an easier time with him. I told him my theory. He heard me out even though his eyes glazed over and then finally asked me: What do you want?

"I want you to tell me what you think I should do?" Stay on Topomax? or try my new hypothesis out on Neourontin? After all you guys are the experts?" (I am really getting very nervy in my old age).

Then he became very frank with me. "Listen, if you just came in from the street, we (his boss and him) we would work up your pain see whether there is anything wrong with your spine, possible diabetes, neuropathy, etc the hastily he added, "but with you I am going to take your word, since apparently you know more about your symptoms and your reactions to the drug than we will ever know."

"When you will have your visit with Dr. J., he will probably write you up anything you ask him; (and he gave me a list of drugs he habitually prescribes. )" If you need anything more exotic, he will refer you to Dr. R (my daughter's doctor, who is a pain specialist)."

This made me very happy. What a switch from my gate keeper, who had been on the defensive from day one and could not get out fast enough from the examining room on my rare visits.

At the end James also mentioned that he at one time took Topamax (50 mg) and he hated it - gave him strange side effects such as tingling sensations in his fingers, etc. Well, paresthesia is one of the main side effects of Topomax, which makes me suspect that eventually I will have to switch back to Neuropentin or Mirapex and a painkiller.

[jumpyowl]

I mentioned a few posts ago that I wrote an e-mail to Ortho-McNeil, the makers of Topamax about my "discovery" about the beneficial effect of 25 mg Topamax once a day on RLS symptoms. In snail mail I received the following reply with some documentation:

Dear Dr. Holly:

Thank you for your interest in Ortho-McNeil Pharmaceutical. Enclosed you will find the information you requested pertaining the following:

TOPAMAX (topiramate/topiramate capsules)

restless leg syndrome

INDICATIONS

TOPAMAX is indocated as adjunctive therapy for adults and pediatric patients ages 2-16 years with partial onset seizures or primary generalized tonic-clonic seizures, and in patients 2 years of age and older with seizures associated with Lennox-Gastaut syndrome.

CLINICAL DATA

Restless leg syndrome is characteried by a need to move because of unpleasant creeping sensations that arise deep within the legs and occassionally also in the arms especially when the patients is relaxed. While topiramate has shown benefit in the treatment of other movement disorders such as Tourette's syndrome and essential tremor, a MEDLINE search (January 1990-March 2003) failed to reveal any studies regarding the use of topiramate for the treatment of restless leg syndrome.

The above information is supplied as a professional courtesy in response to specific requests for medical information. etc. etc

Sincerely,

X.Y. PharmD
Medical Information Manager
Clinical Communications
________________________________________________________

Well, ladies and gentlemen now you have it from the horse's mouth.

The interesting thing is that that the package inserts states among the general precautions that paresthesia (the characteristic effect of RLS) appears to be a common effect of Topamax.

If I had known that before I tried Topamax to get rid of paresthesia I probably would not have tried it. It is quite likely that the reason there has been no clinical trial on the effect of Topamax on RLS is this particular side effect of the drug.

M plan is to use Topamax instead of Neurontin as long as it works for me or the doctor's visit on June 29 whichever comes first. I plan to reply the pharmacist at Ortho-McNeil to call attention to my unusual observation and preference to topamax over Neurontin, the anticonvulsant drug of choice for RLS with pain.

[sardsy75]

I truly admire and envy you Jumpy.

Your history with pharmaceuticals has certainly been your "Ace" card when it comes to dealing with your doctors and sleep clinic techs.

I will be waiting with baited breath regarding the results of your current "experiment" with Topamax. If that doesn't work, you could always give the Gabapentin another shot....

Since going from 300mg to 600mg per day I have been taking them as separate doses....but....as you will no doubt read in my own thread...i'm not enjoying the "effects".

My hubby gave me a right royal grilling about driving "while under the influence" this afternoon!! I was too "out of it" to argue so I just let him get it of his chest.

Anyway, i'm off to bed....not sure about the sleep bit....brains still going crazy!

Keep us posted!

[jumpyowl]

Your doctor is smart Nadia. He immediately told you to take neurontin in two doses a few hours apart when it took me hours of search and some luck to find that clinical study. BTW one thing I did not mention, another instruction to participants was that if one forgot to take a dose and the time for the next dose was at least TWO hours away, he/she could still could take the dose right away. Actually this is what you are doing with your afternoon and evening doses, a few hours apart.

Well, my luck with Topamax is not holding up well. Now I am getting some paresthesia after taking it which last at least one hour. If I take another 25 mg of Topamax, it does not make it worse, some time it makes it a bit better. After less than a week on it.

I found on another website someone with RLS who was taking Topamax. Not for the RLS but for neuropathic pain. I wonder if her doctor was aware of the risk for perasthesia with Topamax.

Now about the iron. Educate your good doctor, he deserves it and is willing to learn. I am sure you have seen this report, from the Iron Study:

Because little is known about what causes RLS, researchers at Penn State College of Medicine and Johns Hopkins University went looking for answers. The team, led by James Connor, Ph.D., professor and interim chair, Department of Neuroscience and Anatomy, Penn State College of Medicine, performed the first-ever autopsy analysis of the brains of people with RLS. This research, presented June 5 at the Association of Professional Sleep Societies meeting in Chicago, uncovered a possible explanation for this syndrome.

"We found that, although there are no unique pathological changes in the brains of patients with RLS, it appears that cells in a portion of the mid-brain aren't getting enough iron," Connor said. "It was a relief to many that there was no neurodegeneration, or loss or damage of brain cells, like we see in Parkinson's and Alzheimer's disease."

The discovery of a physical cause for this disorder establishes it as a sensory motor rather than a psychological disorder. Because cells aren't lost or damaged but rather iron-deficient, there is more hope that treatments can be developed.

For the study, Connor examined brain tissue acquired through the Restless Legs Syndrome Foundation's brain collection at the Harvard Brain Bank. Tissue from seven people with RLS was examined and five samples from people with no neurological conditions served as controls. Cross-sectional slides of the substantia nigra, the portion of the middle brain thought to play a role in RLS, allowed the research team to thoroughly examine the cells' structures and functions. To avoid bias, during examination, the investigator did not know whether the sample was that of a patient with or without RLS.

Although it's been long-suspected that iron deficiency had something to do with RLS, Connor's study found that a specific receptor for iron transport is lacking in patients with RLS. When that mechanism malfunctions, enough iron gets into the brain cells to keep them alive, but not enough so that they function optimally. That missing iron may cause a misfiring of neural signals to the legs creating the creepy-crawly feelings.

"This doesn't necessarily mean that a person has dietary iron-deficiency and needs supplements," Connor said. "It means only that these receptors aren't packaging and delivering an adequate amount of iron to the specific cells in this portion of the brain."

This explains why some patients find temporary relief from iron supplements, but it is important that any supplementation therapy be managed by a physician.

Although not FDA-approved for the treatment of RLS, a few prescription drugs, which have been approved for other conditions, have temporarily relieved symptoms in some patients. One such drug is that used in Parkinson's disease to calm tremors. The cells in the brain in RLS that are iron deficient are the cells that make the neurotransmitter dopamine. Dopamine synthesis requires iron and this is the likely reason that small amounts of the drugs that are used to treat Parkinson's patients can be effective in RLS.

Connor's next step is to continue to pinpoint other potential breakdowns in the iron packaging and transport system to this part of the brain, including the genes that regulate the iron transport proteins.

"We hope these discoveries lead to a test that could diagnose this syndrome, and a potential target for a therapy to bring long-term relief to those suffering with restless legs syndrome," Connor said.

This study was funded in part by grants from the National Institutes of Health and the Restless Legs Syndrome Foundation.

Other members of the research team were: P.J. Boyer, M.D., Ph.D., Departments of Neuroscience and Anatomy, and Pathology, S. L. Menzies, Department of Neuroscience and Anatomy, and B. Dellinger, Department of Pathology, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center; R.P. Allen, Ph.D., Department of Neurology, Johns Hopkins Bayview Medical Center; W.G. Ondo, M.D., Department of Neurology, Baylor College of Medicine, Houston; C.J. Earley, M.D., Ph.D., Department of Neurology, Johns Hopkins Bayview Medical Center.

Contact
Valerie Gliem
vgliem@psu.edu

717-531-8606

I feel I would want to get in on those friendly hugs, too, Nadia and Ruby, nice, sympathetic hugs (with stiff arms - so it is all above board ) ! The longer we are trying to treat this beast the more complex it appears to be. But since I am still a newcomer as compared to you all, I am just starting to appreciate all the valuable help you "guys" are giving me. Thanks for spoon-feeding me all this valuable info and for your friendship.

Love and deep relaxing sleep to you both.

[jumpyowl]

Last time I mentioned that I was taking Topamax when paresthesia and general malaise have started to rear their ugly head. It did not seem to help by itself so I started to suspect that it was either Klonopin, or Hydrocodone, or both what was actually helping. Even though I only have taken Hydrocodone regularly 2 times two pills (5 mg/500 mg) a day.

So I stopped Topamax and did not start on Neurontin again. The nature of the pain also started to shift around. The last two days I was on just pure opioids. I also used a sleeping draught instead of klonopin once. Something similar to chloral hydrate known to promote delta phase sleep.

Perhaps not surprisingly I feel fairly good. The pain is now similar that I had a year or two ago after having had sciatica attack. Then I took Celebrex, an antiinflammatory, and hydrocodone; and the scitica went away in two weeks.

I still think I have RLS and I definitely have PLMD but I am not sure what else I have. I still keep recalling the PA's last comments, "perhaps one should work up your pain...." But as any genuine RLS sufferer can tell you: paresthesia is worse than pain.

I think I will definitely try a dopamine agonist in the future (perhaps Mirapex or Sinemex) just for diagnostic purposes, first without the painkillers and then with the pain killers. As it is known (not to my gate keeper), one has to be careful mixing opioids and dopamine agonists. The opioids have to come first otherwise they are wasted (ineffective).

Well, all these do not make me feel very smart. But at least I did not claim I discovered a cure for RLS

[sardsy75]

Well, all these do not make me feel very smart. But at least I did not claim I discovered a cure for RLS

Nuff Said!!!

[mapmaven]

Kathy, Nadia, Dr. JumpyOwl,
Reading your various postings has been a welcome affirmation for me.

I'm 50 years old, grew up with those infamous "growing pains", but didn't have a clue I had this disorder because I've had night-hours employment my entire adult life, and slept early morning and into the day normally... until THIS job (ten years last month). The last ten years have been an increasing nightmare.

Since I landed this position, I've been fighting a sleepbattle with this unknown assailant, increasingly frequently but still randomly, for all 10 years, and was approaching an end of one sort or another when I tripped over a mention of RLS on the web one late late late night. I picked up that ball and ran with it, made an appointment with my PCP (GP in HMO-Speak) got as much web generated info printed and read as I could before the appointment, and was delighted to find that my very proactive PCP was in total agreement with what I had found . In that same appointment, I found out that he was discontinuing his private practice and becoming a "hospitalist" . He tried to set me up with an appropriate doctor's letter to my place of employment, but I was on my own for a PCP. We also determined that I was indeed anæmic, and have taken steps to alleviate that.

I've found a PCP who is incidentally moderately "up" on the disorder, but who is not especially proactive... more like a status quo kinda guy.

My chain of command at the office (a state government agency) has been absolutely brutal about the issue, and I don't at the moment have the option of walking away. I had to invoke the ADA to get my hours changed ever so slightly for some relief (I come in at 10 am, leave at 6:30p). I work for people, SCIENTISTS no less, who, because they cannot experience this syndrome but are forced to deal with it through ADA, make it clear they feel I'm faking it .

Reading your information, your journey through the various pharmaceutical quagmires you've braved, and your insights, has given me back some of that sanity I so dearly miss. I'm arming myself with your information, positive attitudes and borrowing a bit of confidence to make another appointment with my Doc and kind of take the reins. Am I correct in thinking that I need to book a full diagnostic visit with a sleep disorder clinic, and do I need to get more than one specialist to review results?

I'm pretty significantly sleep-deprived now, but not nearly to the extent of what I read in your missives; anything I can do to arrest the progression of this will be welcome news. I'm relatively certain, from what I've read so far, that elimination of it is not currently in the stars.

Thank you ALL SOOOO MUCH for being here and taking the time to lift others!! And, thank you for reading even part of this tome!

Eleanore
New Mexico

[jumpyowl]

Hi, Eleanore! It is not five o'clock yet but I have to get the mail ready as I have another volunteer job - helping lasik victims.

There is a medical bulletin on this website I found useful and Nadia can give you links when she returns. Let me just comment on your nice post briefly before I have to go.

I think you need to tell us more about your symptoms and what you do for them. I now have the distinct impression that RLS is an 'interactive' affliction. Attempts to treat the symptoms appear to change the symptoms more than just diminish them. Doing almost anything that changes your life style will somehow come back and "changes your target" (it is hard to explain).

Also bear in mind that this whole thing originates in the brain which is a complex system by anybody's standards. The medications that are used are all "off label use." And even in the primary use the mechanism of action is usually unknown. The temptation to pass the back or even deny its existence must be tremendous for physicians.

Even before your sleep study, the ferritin levels in your body have to be worked up by somebody who knows a LOT about it! It is important because that alone can cause your symptoms! So before you bombard your system with dopamine agonists, anticonvulsants, opioids, tranquilizers and the like, make sure you correct the deficiencies that are definitely related to your problem.

Yes, I am in favor of a sleep study but only if it is done right. It is difficult to do correctly in someone who has severe insomnia and sometime some judicious use of certain medications has to be employed.

Please call me jumpy, as we do not stand on formalities here. I sense that you will be a valuable addition to our enthusiastic and devoted group as we strive to help each other!

[Rubyslipper]

First, Jumpy, let me give you my thoughts on hugs. If I were to meet you in person, I would give you the biggest all-around bear hug ever because you have become not only our greatest researcher, but because you have become a very dear friend. We may never meet but believe me, you and Nadia are my support and life-lines. I trust you both and know you have my well-being in mind. Second, Eleanore it is good to meet you. You will find so much info on this board as well as very caring people. Please listen to what Jumpy says on doctors, sleep studies and meds. He may be new here but believe me he sure helps us all. If you stay with us, you'll find we all have gifts that we have brought with us (although I think mine is being long-winded ) This site and my new friends help me so much even if it is only to vent. You can also e-mail us privately if there is something that you wish to discuss. Anyway, keep us posted on your journey.

[Guest]

Thanks for the quick replies, Jumpy AND Ruby...y'all are blessed discoveries! (oops, is my Texas exposure sneaking in??)

My RLS signs and symptoms/history:

I've ALWAYS been more alert in the afternoons and nighttime than in the morning; if I had the option, before this job, I did my dead level best to work evenings and "graveyards" because of my alertness level. I've always been more productive in the pm.

Before I realized what was going on and since I got this job in '94 (by the way, I absolutely LOVE my job - the main reason I haven't left!) it was typical for me to try to go to sleep around 11pm or so; rising was typically around 7am. The first 7 years or so, I had no clue what was waking me up, and it began to look like a bed linen war zone each morning (yes, I sleep alone, which after this diagnosis may not be a bad thing...!). About 3 years ago, with no clue why I was tired all the time and seeming to go to sleep progressively later, I started feeling "twitchy" in my lower legs after laying down and relaxing, and learned a flex/extend repetitive motion which seemed to alleviate that and eventually would rock me to sleep.

By then, it was increasingly difficult to even get up in the morning. I actually found myself, after the alarm had gone off for the 4th time, consciously aware of my breathing and that, even awake, I was experiencing a deep-sleep breathing pattern . I also occasionally found it painful to force myself into consciousness, experiencing mild nausea and a less than mild headache on occasion upon physically rising. I'm physically active, and this started putting a major crimp in my energy levels.

About 2 years ago, I found myself sharing a bed with a family member at a family "gathering"; it was critical that I keep still (she is a really light sleeper), and I could not for the life of me, work or will the "twitchies" out of my calves. I ended up getting up, walking for a bit, laying back down, having to get up again, walking, etc., etc., much to the dismay of all present. It became clear that something besides my willful spirit was at work here. I started munching to stay awake, and increasing caffeine and have physically paid prices for both of those .

Last May (2003), I had the wonderful privilege of attending my brother's change of command/retirement ceremony in Hawaii . The daylight flight down there was delightful, and the week I was there I experienced absolutely NO jet lag to begin with, much to the family's surprise, but started having some sleep-schedule problems toward the end of the visit. Fast forward to the flight back to the mainland, the "red-eye". I boarded at 11pm Hawaii time. I was absoLUTEly unable to sit in my seat for pretty much the entire flight (for the first time in my life when flying); I ended up with my backside up against the separating bulkhead, doing stretches and isometrics in the dark, just about 80% of the flight time. The next week at work was a jet lag nightmare, and I never really have recovered from it completely. I did note in the next little while and since then, that, when I was concentrating on handwork or on computer stuff, symptoms didn't seem to appear.

I tripped upon the 'net information last summer , and was diagnosed in August of last year. Since then, I've learned that I do sleep better if I don't even TRY to "sleep through it". If things get twitchy, I get up and do something. If they don't, I try to take advantage of the moment, though I admit to a bit of dreadful anticipation during those times, just waiting for the twitchcritters to start nibbling.

The ONLY intake of chemicals I have reluctantly allowed is iron supplementation (I prefer a liquid iron supplement like Floradix, but can't usually afford it), occasionally Kava Root (NOT kava-kava!!), and have tried a bit of cider vinegar in hot water at night by recommendation of another I know with the same symptoms (by the way, it does seem to help, but I'm wary of the psychosomatic aspects). Tried chloraphyll, but couldn't quite handle it... The doc and I tried Ambien early in the process after diagnosis, but unfortunately, just like with Benadryl, I have a paradoxic reaction to the stuff. It does just exactly OPPOSITE of what is needed.

I have a strong antipathy for messing with mother nature's balances, though I do recognize that there is obviously something out of balance here, beyond my meager mechanations. I'm wondering if the subtle alteration in pH with intake of the vinegar is actually doing anything. I did have a complete (seriously complete) blood workup done near Christmas. I've managed to get my RBC to acceptable levels, but my binding level was high; the lab told me that indicates a pretty global anæmia.

And yes, I'm currently weaning out the caffeine and sugar, but that seems more difficult than I anticipated. I've at least eliminated them from my post-sunset routine.

Now... here's an interesting dilemma . I probably have to have both knees replaced (concurrently, I hope...) in October, due to some of that physically active lifestyle previously mentioned. I will hopefully be 50 pounds lighter (dang munchies !!), and am interested in the concurrent replacement so that I have a balanced recovery. Problem is... I will obviously be less than able to walk for a while, and if the twitchies appear while incapacitated, am I going to go insane???????? Do I need to investigate some of the pharmaceuticals for this maddening companion before I get the surgery done? Any suggestions are eagerly received, I'm NOT looking forward to this, but it beats a wheelchair.

And you thought YOU were long-winded, Ruby??? Just like my housekeeping, c'mon over, I'll make you feel better about yours...

I promise, FAR less text next time !

Eleanore

[jumpyowl]

Sure looks like you and (especially) your doctor need a plan. Prescribing a sleeping pill is probably not the best way to treat RLS. But I wish I would know the answer. Sleeping medication works as a supplement to something that gets rid of the paresthesia (weird sensations).

Your doctor has several choices but he/she should do some reading because it is fairly complex and less than predictable.

Somehow the educated guesses all think that there is deficiency in the dopamine agonists in the brain. This can be "treated" by either adding a precursor of dopamine agonist (DPA), or ergotamine derived DPA, or non-ergotamine derived DPA. One has to take low doses but there are two curses (especially with the precursors - no pun intended), the dose has to be incresed, and augmentation. where the disease is getting worse as a result of taking medication.

Painkillers seem to work, especially opioids. The simplest and cheapest is probably Hydrocodone. (Right now, hydrocodone by itself seems to work for me after I got off anticonvulsants.)

Also benzodiazepines as well as anticonvulsants (neurontin/gabapen).

Now, very important in preparation for your surgery. You and your doc should find something that works for you THEN make double sure that they will give you your mdication after surgery!!! They often promise and then do not follow up. Which can be a very bad experience and there is not much you can do in the recovery room, if the meds are not on the list.

We shall talk about that later before you go under the knife.

[jumpyowl]

Since last Monday I am not taking either Neurontin or Topamax. I have been getting along with hydrocodone two pills twice a day, early afternoon and before retiring. The usual pill is 5 mg/500 mg but I also have some 10 mg/250 mg which I like better. I am not crazy about all that acetaminophen and, of course, the latter contains more hydrocodone.

I am doing at least as well as with Topamax but actually better. The augmentation has certainly stopped.

Go figure!

[jumpyowl]

I selectively quote from an article (also quoted on yahoo RLS support group) published in Consumer Health Digest #04-20, May 19, 2004

Warner-Lambert to pay $430 million for illegal marketing of Neurontin.

The pharmaceutical firm Warner-Lambert has agreed to plead guilty and
pay more than $430 million to resolve criminal charges and civil
liabilities in connection with its Parke-Davis division's illegal and
fraudulent promotion of unapproved uses for Neurontin, one of its
drug products. Federal law requires manufacturers to specify the
intended uses when they apply for FDA approval. Once approved, the
drug may not be marketed or promoted for other purposes ("off-label"
uses). Neurontin was approved by the FDA in 1993 solely for
supplemental anti-seizure use by epilepsy patients. However,
Warner-Lambert promoted it for treating bipolar mental disorder,
various pain disorders, Amyotrophic Lateral Sclerosis (ALS, a
degenerative nerve disease commonly referred to as Lou Gehrig's
Disease), attention deficit disorder, migraine, drug and alcohol
withdrawal seizures, restless leg syndrome, and as a first-line
treatment for epilepsy (using it alone rather than in addition to
another drug). The government charged that Warner-Lambert promoted
Neurontin even after scientific studies had shown it was not effective
for bipolar disease or as a sole treatment for epilepsy.

Warner-Lambert's strategies included:

**Encouraging sales representatives to provide one-on-one sales
pitches to physicians about off-label uses of Neurontin without prior
inquiry by doctors. The company's agents also made false or
misleading statements to health care professionals regarding
Neurontin's efficacy and whether it had been approved by the FDA for
the off-label uses. Warner-Lambert also utilized "Medical Liaisons,"
who represented themselves (often falsely) as scientific experts in a
particular disease, to promote off-label uses for Neurontin.

**Paying doctors to attend so-called "consultants meetings" in which
physicians received a fee for attending expensive dinners or
conferences during which presentations about off-label uses of
Neurontin were made. These events included lavish weekends and trips
to Florida, Hawaii, and the 1996 Atlanta Olympics. There was little
or no significant consulting provided by the physicians.

**Implementing many teleconferences in which physicians were
recruited by sales representatives to call into a prearranged number
where they would listen to a doctor or a Warner-Lambert employee
speak about an off-label use of Neurontin.

**Sponsoring purportedly "independent medical education" events on
off-label Neurontin uses with extensive input from Warner-Lambert
regarding topics, speakers, content, and participants.

**Misleading the medical community about the content, as well as the
lack of independence from the company's influence, of many of these
educational events. In at least one instance, when unfavorable
remarks were proposed by a speaker, Warner-Lambert offset the
negative impact by "planting" people in the audience to ask questions
highlighting the benefits of the drug.

**Paying physicians to allow a sales representative to accompany them
during patient visits in which the representative offered advice that
was biased towards Neurontin use.

**Deciding not to seek FDA approval for any of the non-epilepsy
indications for fear that approval would allow generic competitors to
compete with a patented "son of Neurontin" drug that the company
hoped would be approved for broad use.

Interesting, huh?

Nowhere it is stated, however, that neurontin was not found to be effective for RLS.

Even though I do not condone sharp practices on the part of pharmaceutical companies, with all the regulations (some of them are less than meaningful) and the generic competition, some times they are between the rock and a hard place. And who profits from the fines? Two guesses.

[Guest]

Hello everyone,

I'm a 32 year old male that seem to have trouble with sleep and leg movements. I have read about RLS and seems to find myself thinking. I have seen countless doctors and none of them can tell me what is wrong. They are baffled that i am haveing so much pain and sometimes the pain is so bad i can barily walk but i do to help stop it a little...I don't sleep well at night and if i do sleep its for a hour maybe 2 than I'm being woke up by my legs wanting to move and pain.

I have a tingling, itching, crawling feeling in my legs all the time mostly at night when I'm trying to get rest. Also have burning in my feet all the time now gotten worse over a few years. had this now since the fall of 2001. Every year seems to be more a challenage. I take sleeping pills to help me sleep and pain meds to help dull the pain.

This is all new to me still and i was wondering if someone can give a little advice to someone that has know idea and has trouble staying focused.


Vannod

[jumpyowl]

No wonder you have problems staying focused, with two hours of sleep.

Need some more info about you so we can help. Were you diagnosed having RLS? Are you under doctor's care for it?

What pain medication do you take and what sleeping pills? this is important because some of these medications help RLS, some may make the symptoms worse. Some time it is better to attack the problem at its root, other ways may work for you better.

Need to start a dialogue in exchanging solid information. You sound like someone who needs help!