Horizant: The Second Coming of Gabapentin

Like the religious notion of reincarnation, apparently some drugs are destined to be reborn as newly designed and re-packaged drugs for brand new indications.  I’ve written about Contrave and Silenor, for instance—two drugs with generic equivalents that have been re-tweaked, re-packaged, and renamed, for newer (and larger) markets.

This week, the FDA granted its approval to yet another “new” agent (that’s “new” with an asterisk, mind you), Horizant, developed by GlaxoSmithKline (GSK) and Xenoport.  Horizant is a name-brand version of gabapentin, which is also known as Neurontin.  While on the surface this appears to be an attempt to re-brand an existing drug, it may actually provide some advantages over the already-available alternative.  But the question is, at what cost?  And for what exactly?

Gabapentin was approved in 1994 and is marketed as Neurontin.  It’s approved for the treatment of partial seizures and post-herpetic neuralgia (although its manufacturer, Pfizer, got into some serious trouble for extensive off-label marketing of this compound—so what else is new?).  These days, it’s actually quite widely used by neurologists and psychiatrists, not just for seizures, but also for  chronic pain syndromes, anxiety, mood stabilization (where it’s not particularly effective), and even for alcohol dependence.

Gabapentin’s bioavailability—the ability of the drug to enter the bloodstream when taken as an oral dose—is rather low (and, paradoxically, decreases as the dose is increased) and the duration of its action is quite short, which means that users need to take this drug three or four times daily.  The key advantage of Horizant is that it is a “pro-drug.”  Technically it’s gabapentin enacarbil, and the “enacarbil” refers to a molecule added to the drug which allows it to be absorbed along the entire GI tract, resulting in greater blood levels.

(Interestingly, in early 2010 the FDA rejected Horizant’s first request for approval, citing a small but significant risk of cancer.  They relented, however, and approved it this year after “reconsidering the risks and benefits.”  Sound fishy?  No, I’m sure it’s all good.)

So who might use Horizant?  Well, you can bet that GSK and Xenoport hope that anyone who currently uses Neurontin (and there are a lot of them) is a potential customer patient.  Officially, though, it was approved for the treatment of restless legs syndrome (RLS).

Now, RLS is one of those “diseases that may not be diseases”—or “diseases that you didn’t know you had.”  (See the articles here and here for accusations of “disease mongering” by GSK [hey! GSK! Coincidence? I don't think so!] when it introduced Requip, the first “treatment” for RLS.)  Hopefully it goes without saying that when you see headlines like “Disease X may affect  7-10% of the population” when, in fact, no one had even heard of Disease X ten years ago, you have to be somewhat suspect.

Nevertheless, like much else in psychiatry, there may be some reality to RLS; it may in fact be a true pathophysiological entity that responds to medication.  (Whether this entity afflicts 10% of the population is another story.)  Current treatment strategies involve dopamine replacement, in the form of Requip (ropinirole) or Mirapex (pramipexole) so maybe dopamine insufficiency is part of the process.

The symptoms of RLS are “an urge to move the limbs, which improves with activity and worsens with rest.”  That’s about it.  Which leads to yet another problem (a problem that GSK and Xenoport don’t see as a problem, that’s for sure): with such nonspecific and common symptoms (who among us hasn’t felt somewhat restless, with interrupted sleep?), a lot of people might get diagnosed with RLS when their symptoms are actually due to something else.

I thought of this a few weeks ago, when I saw that the RLS “patient page” on the National Institutes of Health (NIH) web site referred to RLS as “akathisia” (thanks to altmentalities for the link).  Akathisia (from the Greek for “not sitting still”) has long been recognized as a side effect of some—perhaps most—psychiatric medications, from antipsychotics to antidepressants.  It is often described as an “inner restlessness,” a “need to keep moving.”  Sometimes it’s associated with extreme emotional distress.  In terms of severity, it can range from a mild nuisance to—in some cases—aggressive tendencies.  (Indeed, the psychiatrist David Healy has even linked psychotropic-induced akathisia to suicide attempts and violent behavior.)

Psychiatrists really don’t know exactly what causes akathisia, and disagree on how to treat it.  It may have something to do with dopamine blockade, or something completely independent.  Treatment might consist of benzodiazepines (like Ativan or Valium), beta blockers (like propranolol), or discontinuing the drug that caused it in the first place.

Unlike RLS, which seems to bother people most when they are lying down (hence its tendency to disrupt sleep), drug-induced akathisia is worse when people are awake and moving around.  Sounds like a simple distinction.  But nothing is quite this simple, particularly when psychiatric drugs—and real people—are involved.   In fact, many psychiatric meds can cause other motor side effects, too, involving (theoretically) yet other neural pathways, such as “parkinsonian” side effects like rigidity and tremor.  (In fact, some antipsychotic drug trials show “restlessness” and “akathisia” as entirely separate side effects, and when I’ve tried to ask experts to explain the difference, I have never received a straightforward answer.)

So what does this all mean for Horizant?  I could be cynical and simply remark that GSK/Xenoport are capitalizing on the nonspecificity of symptoms, the tremendous diagnostic overlap, and the fact that motor side effects, in general, are common side effects of antipsychotics (one of the most widely prescribed drug classes worldwide).  In other words, they know that there are a lot of people out there with “restless legs” for all kinds of reasons, and lots of psychiatrists who will misdiagnose akathisia as RLS and prescribe Horizant for this purpose.  But in reality, that remark would not be all that cynical.  Remember, there is this pesky little thing called “return on investment.”

What it means for the patient (or should I say “customer”) is more confusing.  A new agent with apparently better availability and kinetics than gabapentin is now available, but approved for the treatment of something that may or may not exist (in most patients), and may or may not be more effective than gabapentin itself.  Oh, and a hefty price tag, too.  Ah, the wheels of psychopharmacology keep turning….

(NB: altmentalities has also written her point of view on the Horizant story… I suggest you check it out, too.)

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43 Responses to Horizant: The Second Coming of Gabapentin

  1. moviedoc says:

    It’s really awful, Steve:

    -We don’t know what causes akathisia.

    -Now RLS is a psychiatric disorder now? It isn’t even in DSM.

    -A lot of people might get diagnosed with RLS (or almost any other illness) when their symptoms are actually due to something else. This is news?!

    -Return on investment is bad.

    Let’s you and I donate all our money to research a drug that just might help a few more people, and IF we succeed, we’ll just give it away. No ROI. Right.

    In fact: We already agree this FDA requirement of “approved” indications and implied condemnation of “off label” use makes no sense. This new drug may help a few sick people get better. Only a fool would continue to pay for and take any drug that doesn’t help them, and as drugs go this one is pretty safe. The Pfizer lawsuit you cite, and the docs who got in trouble related to gabapentin have absolutely nothing to do with current legitimate use of the drug.

    • SleepMD says:

      RLS has been around for a while. We also know that it can be exacerbated by several psychiatric medications.

      The pharma industry however is much more powerful than any group of physicians out there and they will lie if they have to, using complicit health industry professionals (physicians, pharmacists, nurses, psychologists) to ‘persuade’ the MDs to write these scripts.

      As far as return on investment. For what, a prodrug? That probably was invented at a university using taxpayer dollars? I am against welfare for the uber wealthy.

      • moviedoc says:

        I still don’t get what you’re complaining about. “RLS can be exacerbated by psch meds.” So what?

        “Pharma will lie if they have to.” You or I would lie if we have to. You claiming you never told a like?

        Is persuasion a sin now? Are most physicians spineless? You bet. Shame on them. Don’t blame pharma for that.

        Is there something wrong with prodrugs? If it was invented with taxpayer dollars, why does it take millions of dollars of private capital to get FDA approval?

        Welfare for the uber wealthy? Who do you think owns stock in those companies? I’ll tel you: pension funds for people like us and our parents, even our patients. And they were willing to take a risk. Not like welfare where you’re entitled.

        How about reporting back to us in a year. I want to know if you refused to accept samples, if you refused to prescribe the drug.

    • Melissa says:

      A few years ago a neurologist prescribed neurontin and later lyrica for some of my most debilitating MS symptoms. On both courses of the dugs he steadily increased the dosages until I was at the top of the efficacy scale according to the drug interaction leaflet that comes with the drugs. In no time at all, I was complaining to my pharmacist regarding my burned tongue and the stevens johnson syndrome I was suffering from. ( I had earlier encountered sjs while taking penicillin). The pharmacist explained that it was allergic reaction to the gabapentin that was causing my symptoms. With neurontin, I simply passed out in a blaze of lights and odd sounds. With lyrica, my entire body was in hives and my tongue was burned. I got off these meds and later recovered. This year my sleep md prescribed 500 mg of Horizant to take along with 5 mg of Lunesta mixed with Silenor at night. Needless to say the sjs is in full swing. I did not know that Horizant was actually gabapentin and pharmacist couldn”t tell me because I was given samples at dr’s office. Now I am experiencing tremendous problems because the skin peeling and itchiness in in my eyes and crwaling up my face. Help. I hate gabapentin!

      • chelle says:

        Melissa,
        I’m not trying to blame you for this at all, but any drug you have had a reaction to like this should be listed in your allergies for your doctors to see. Doesn’t help now, but could in the future with any “new” drugs you may be prescribed.

  2. Donna Martin says:

    I am sickened by your article. I have suffered with RLS for years and it is very real and very horrific to live with. IT IS NO JOKE. Just because a disease affects millions and is chronic rather than acute dos not take away from the fact that it causes people to suffer. I can tell you first hand that I have had stage three breast cancer and would rather die from my cancer than live a life with RLS. I am on medication that controls it and guess what-the medication mirapex causes obsessive gambling of which there is now a major lawsuit of which I am part of going on in Canada.

    Millions of people suffer from cancer, MS, MD does that make it any less real or is it just more real to you because those diseases can kill. I would get your facts straight before I go about publishing articles such as this one.

    • stevebMD says:

      Donna, with all due respect, I see nowhere in my post where I referred to RLS as a “joke.” If anything, I commented that “it may in fact be a true pathophysiological entity that responds to medication,” because, as a matter of fact, I have seen people suffer dearly from this condition and, yes, respond to Requip and Mirapex.

      I was simply drawing attention to the fact that because the diagnostic criteria for RLS are so vague and nonspecific, the drug manufacturer can be assured of people being diagnosed who don’t have the degree of incapacitation that you describe. This is good for their bottom line, but not so good if you’re taking the drug (for RLS symptoms that are less “horrific” than your own) and develop compulsive gambling or hypersexuality, which, as you point out, have been observed with dopamine agonists.

  3. Neuroskeptic says:

    RLS certainly exists. I have experienced it, thankfully only mildly, after use of mirtazapine 45 mg which I take every night; happens about 1 night in 10. It’s hard to describe, the leg movement is halfway between voluntary and involuntary, and accompanied by a unique sensation. It is not placebo because I didn’t know mirtazapine caused RLS until I experienced it. The published criteria look extremely vague but I think “you know it when you feel it”.

    • stevebMD says:

      Neuroskeptic, you raise a good point. It’s actually quite common in medicine to “know it when you feel/see it.” RLS is probably one of the best examples of a patient’s subjective experience that is so different from normal and yet so indescribable and obviously (as of today) non-quantifiable. By the same token, there are clinical presentations that an experienced clinician will “see” (e.g., bipolar disorder vs general irritability vs hyperactivity) that, similarly, can’t be broken down into a series of quantifiable symptoms.

      This is what makes medicine so fascinating. However, the push for shorter office visits, checklist-based medicine, and the encroachment of EMRs, all conspire to remove the “intangibles” described above. As a result, we’ll end up with more slipshod diagnoses, dumbed-down doctors, uneducated patients, and wasteful (& potentially harmful) treatment.

  4. Ciro Marchetti says:

    Dear StevebMD.
    You clarified in an early post that you do not consider RLS a joke. Thank you for that at least. Nevertheless I still perceive a certain lack of conviction by yourself and many of your colleagues who in other essays and articles have questioned wether RLS is real and worthy of treatment. God help those of us who do suffer from this syndrome, that we are dismissed by such “experts” who are clearly fortunate enough to not know for themselves first hand the distress it creates and therefore have the luxury to hypothetically question its existence. And indeed some in their arrogance and ignorance concluding its all some profit generating ploy by the evil drug industry. I wouldn’t normally wish harm or misfortune on anyone, but in this case I pray that someone of influence in the medical profession would experience what I have to experience, would have to manage like me on just a couple of hours of sleep. Because then there might be a possibility that all those white coated “experts” might address the subject from a different perspective. I am no medical expert, I did not attend medical school, I do not have a diploma on my wall, but I know what many of your colleagues do not. This syndrome is very very real. My current medication Requip makes it tolerable… just. Hypothetically were that and similar medications be withdrawn from the market by lack of credibility from the medical profession as to its need, that would be for some of us a suicidal scenario, and that is not meant to sound melodramatic. The cause may indeed be in my my head, rather than my legs but that does not make it any less real. I find it truly disturbing that that is even questioned by the medical profession.

  5. Gail Callahan says:

    I agree with respondent who has RLS and questions the medical community that is skeptical about whether it is real or not. I have had restless leg syndrome since I graduated from college and my family (father, uncles, sister and one brother) all have it and have been part of a ama study. My Neurologist did a study on my family and showed evidence that it was hereditary and it was a lack of dopamine. I have been through misery for over 30 years and just recently discovered that carbidopa-levodopa caused a rebound effect and so was getting rls worse every day and earlier. I now take mirapex at night but still have rls symptoms for about 2 hours every night. Trying to fly is a nightmare when required to sit with our seatbelts on and not move about the plane! I am looking forward to this new medication and only hope that it will alleviate my symptoms more than the mirapex does.

  6. Malcolm Field says:

    I contracted severe RLS and foot neuropathy at age 76. Not the typical symptoms which is why it took so long to diagnose. Burning legs from the knees down from about 5pm to 5am and an electric like tingle over most of my body including face. Mirapex mostly quieted down my legs and gabapentin (now Lyrica) completely quieted my body. The previous writer who mentioned suicide is not far off the mark. Gabapentin saved my life. Maybe my diagnosis of RLS is incorrect, but whatever neurological disease I have is definitely real and incapacitating. I’m looking forward to trying Horizant. Hopefully, but improbably, the side effcts will be lower than gabapenton (blurred vision, balance and weight gain).

  7. Jean says:

    CAN ANYONE HELP ME!!!!!!
    I HAVE Burning FULL TORSO TO ALL EXTREMITIES and an electric like tingle beneath my skin over most of my body …Starts after being in bed for 1 to 3 hours and continues and increases in intensity til I get up and stay up…THEN I AM FINE have had this for over 3 years now. seems to gravitate from side to side. Also itching from top of head..neck…armpits …waist and breasts. problems only nighttime and am usually fine all day long. can I have seen 3 Internal med Drs. 2 dermatologists..1 psychiatric Dr. 1 psychologist… 1 Chiropractor & Went to Mayo Clinic am now seeing a Neurologist.
    have taken Gabapentin…and just now HORIZANT 10 DAYS…hate all Rx’s

  8. Diane Weissenberger says:

    As a widow living on social security, I think drug companies are leeches. But I am a sufferer of RLS for over 40 years, the last 10 being very severe. This IS NOT A PSYCHOLOGICAL PROBLEM! For too many years doctors told RLS sufferers “it was all in you head” And I agree that there are not very many caring doctors around(limiting visit time, etc.) Until the time comes when researchers can see the need for it, RLS will be on the back burner. If you had done enough research you would have found that Dr Christoper Early from John Hopkins School of Medicine and James Connor at Penn State have shown that iron levels in RLS patients were low in the area of the brain that enables the transport iron in and out of cells.Leading to believe there may be a genetic defect involved in RLS.

  9. Jean says:

    stil in need of help…..I am actually breakin out..from the nighttime body heat….itching occurs once I remain up.

  10. Jean says:

    still hoping for answers to Jean

  11. Kimberly says:

    Dear Steve MD,
    I stumbled across your article as I was curious about a new medication my Doctor prescribed for me recently,Horizant. The reason I was looking it up was that it has worked incredibly well in only three days of use. I have had moderate RLS since I was a teen and then at 35 it became severe. I suffered for two years of pacing the floors all night long. I couldn’t even sit down. I was starting to wonder if I could live anymore, it was that bad. I have it in my arms and shoulders as well. Fortunately I again stumbled across an expert in the field who started me on Requip. I have had accompanied pain that has been diagnosed as peripheral neuropathy/fibromyalgia/ who knows . So I have been taking a combination of requip and tramadol for of about 10 years now and life isn’t perfect but tolerable. I still only get about 4-5 hours of sleep per night. I have tried neurontin before and couldn’t walk a straight line. Then I was accidentally given Reglan in a hospital ER. Resulting in an extreme akathisia reaction. The nurses thought it was entertaining. Crawling out of your skin and doing laps around the hospital gurney was awful!! I have been using Lyrica with so so results. Because I am one off my doctors more challenging cases he always recommended anything that is new. I have been praying for an extended release or better yet a patch. I take meds three times a day and it’s hit or miss if I hit the right time. Anyways the reason I am writing you at 2:00am is that I wasn’t able to take the Horizant at dinner time tonight and my RLS was bad. I took the Horizant while I read your article and I am already feeling the restlessness subside. My requip never works that quickly. Could it be placebo? I don’t believe so, I thought this medication was for pain and was amazed at how well it worked on the RLS.Then reading tonight I was quite surprised and excited to learn that it was indeed for RLS! I just wanted to share with you and others how well Horizant is working on my severe RLS so far, and want to encourage you and other physicians to empathize with the torture many RLS sufferers go through on a daily and nightly basis. I truly love how my own doctor can’t feel, see or measure RLS yet is so passionate about helping us with this very real odd disorder.

  12. p. simonson says:

    took horizant. it effected me so bad i thought i would have to go to hospital.. it made my legs worse,, my blood pressure real high,, 160 over 85. i can take gabapenten but not horizant,, i am suffering form rls..just thought i would share my thoughts with everyone.

  13. Malcolm Field says:

    My RLS and foot neuropathy are completely under control.
    I take 0.5 mg of Pramipexole (Mirapex) at 8pm and 200 mg of Lyrica at 8am and 8 pm. Gabapentin worked as well as Lyrica except that I had to take 600 mg 3X/day which is very inconvenient. Lyrica is far more expensive than Gabapentin, but if you can afford it, it’s worth the 2X/day convenience. I tried the once a day Horizant, but it didn’t supply enough medication to keep the RLS at bay. Had to quit it after only 4 days and go back to the Lyrica.

  14. emmy says:

    I’ve had RLS since childhood, it seems to run in my family as 1 of my older brother’s has had it all his life. We are still being told to stop shaking the floor, table or whatever is moving while we’re moving (bouncing our legs)I am 49 years old and why I do it I don’t know but legs have always felt strange.

  15. Erika Doyle says:

    I have RLS and have used Clonazepam and Requip, which worked for a while, then stopped. I was referred to a Neurologist who prescribed 600 mg’s of Horizant, (one a day,) It worked for five days when I woke itching like crazy on my back and under my breasts. On top of that, the pharmacy can’t get Horizant so now I’m waiting for a medicine that will work and not cause the itching reaction. The first few days of using Horizant was great as I was able to sleep without the twitchy feelings, which made me feel as if I was aroused because I couldn’t stay still and had to move. When it became more extreme, I had to get up and move around, as well as, get cold (like taking a cold shower.) That would help and I could go back to sleep but this occurred so often in places such as the movies, while watching TV, any place where I had to sit still or could relax…I was miserable.

  16. Shawn says:

    Akathisia and RLS symptoms are totally different. I have RLS and it’s nothing like the symptoms noted on webmd for akathisia. Also just because we never heard of something doesn’t mean it didn’t exist. You never hear about something until it’s given a name. I can also tell you I have no problem being still and don’t take antidepressants, the problem is in the sensations in my feet and then up my legs when I go to bed. Everyone who reads this blog needs to remember this is wrote purely as this mans opinion and doesn’t make it true by any means. If something works for you then great and never ever let anyone doctor or not tell you it’s all in your head or your problem doesn’t exit.

  17. Jean says:

    what about horizontal, full body burning sensation starting about 2hours…increasing every 2 hours til one gets up and stays up …then no longer exists….til bedtime horizontal and begins again..increasing evry 2 hours til staying up…and fine again all day.

    • Malcolm Field says:

      Jean, has your neuologist prescribed Mirapex and or Gabapentin (Lyrica, etc)? Most Primary Care doctors aren’t familiar with RLS and it’s many variations. I had the full body version until I started using Mirapex and Lyrica.

  18. complicatedwaltz says:

    I have suffered with RLS for most of my adult life. Again, “you’ll know it when you’ve got it.” It feels like there are ants crawling inside of my bones, and one sleep study showed me twitching 98% of the night, and I never got beyond stages 1 and 2 sleep. No REM sleep makes one slowly go crazy and have a host of other medical ailments, am I wrong?
    I slowly experienced augmentation with Mirapex and finally got myself to a real specialist who was able to help me (Dr. Mark Buchfuhrer in Los Angeles, THE guru of RLS). There aren’t a lot of drugs out there for RLS, other than the dopamine agonists (which just caused more problems for me) and opiates. I have been feeling pretty great adding Horizant to my regimen, even though I’m embroiled in appeals with my insurance company to cover it (and at over $300/month, this is a real hardship). Horizant isn’t the same as straight-up gabapentin, as this is gabapentin enacarbil, an extended release, giving it different pharmacokinetic profiles. For RLS sufferers, this means getting relief all night.
    I find your review of this drug (and RLS in general) to be pretty damning, and if you are so concerned about the loosey-goosey diagnosis criteria, then the answer is for doctors to become better informed about RLS and acceptance as a bona fide disease, and not just “all made up in your head, like fibromyalgia is” (as one spectacularly incompetent GP once told me), and allow doctors to actually try to address patient’s RLS symptoms with a few of the different pharma “tools” available. Dr. Buchfuhrer has written a clinical text for the diagnosis and treatment of RLS (which I assume this blog author has not read), and has co-written a clinical guide for treatment criteria for the Mayo Clinic, and it is available online to both practitioners and patients, shared here for the sufferers:

    http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619611621605.pdf

    Your assumption that ‘just because we didn’t know about this disease 10 years ago makes it suspect,’ is really strange coming from a psychiatrist. Look how far pharmaceuticals have brought the treatment of psychiatric illnesses — pretty far since the days of just shootin’ em all up with Thorazine.
    A side note to RLS sufferers: rls.org has a forum that is a great resource to stay informed. I’d also highly rec’d Dr. Buchfuhrer’s and the books he has written, and him as a practitioner, too.

  19. ladyjean says:

    I understand the questioning of people about the reality of a “new” diseases when it is given a name. But for those of us who have it, it’s a relief to finally have it recognized and hopefully cured. I first complained of this creepy crawly feeling in my legs and how I had to move them to get rid of the those sensations, just to have the sensations build up again. This goes on over and over. When I was a teenager the doctor said it was growing pains, whatever the heck that was supposed to be. My sister had it too and we could only commiserate together as no-one seemed to know what was wrong. I’m fortunate, I only have it rarely now, sometimes mildly every night for a week, or I can go 6 months without it. I’ve tried to describe the feeling you get if you try to keep your legs still and it’s like when someone scrapes fingernails down a chalkboard. It will build and build and you HAVE to move your legs for it to stop. I only found this forum because I looked up Horizant which my neurologist gave me because a sleep study showed I move a lot during the night and wake up with headaches.

  20. [...] called Gabapentin (G).  I had a look online to try and find the difference, and it appears as per this review that GE has a better bioavailability than G.  What that means is that the body is able to pull [...]

  21. Susan J Smith says:

    I am someone with confirmed disnosed severe RLS. I started taking Horizant a couple of days ago. So far it’s the only thing thst has helped. I have had RLS since childhood and it has grown worse as I’ve gotten older. I have also been on anti psychotic medications due to being bipolar. I suffer from multiple chronic illnesses and am something of an enigma to most doctors save one. RLS is no joke and very real to thosr of us who have always had it, even before the use of the psychiatric medications.

    • Malcolm Field says:

      Did you try either Mirapex, Lyrica or Gabapentin before Horizant?
      I’m currently under control with 0.5g of Mirapex at 7pm, and 200 mg of Lyrica at 7am and 7pm. Been on that regimen for past two years with success. I had the full body RLS! Arms. legs, shoulders, etc.

  22. C Rich says:

    This medication should only be used by a Movement Disorder Specialist.

    Psychiatrists should not be administering this drug.

    This medicine works for people that need it.

    People who have suffered from Long Infections. Post herpetic neuralgia and RLS are real, but get a Movement Disorder Neurologist to diagnose you, not a psychiatrist. RLS can be horrible leg spams that don’t cause the legs to even move. Everyone is different.

    This medicine works!

    (Patient at the Parkinson’s and Movement Disorder Clinic Tx)

  23. Donna Martin says:

    Donna Martin
    I am wondering if anyone knows whether Horizant is available in Canada. I have severe RLS as I mentioned earlier in response to Steve’s article. RLS is very real and very challanging to live with. It stems from the same part of the brain as Parkinison’s and unfortunately is treated with dopamine enhancers. Mirapex, Requip etc. they now know causes in some people OCD and specifically towards gambling. We have a class action lawsuit in Canda and hopefully some of us will be able to recoup at the very least some of our financial losses. The loss of dignity, integrity and family relationships can never be compensated for. I did try taking fentanyl for 1 1/2 years. It works great for RLS but a word of caution it is 100 times stronger than morphine, comes from the opiate family and for me at least caused extremely severe hot flashes almost 24/7 and severe depression. I was so suicidal I had to come off the drug. And for those that question RLS, if they do their research it has one of the highest rates of suicide due to lack of sleep which no human being can go without and believe me without meds you DO NOT SLEEP, can’t even sit and have to walk to keep your legs from twitching just to keep sane. The depression I believe also stems from the fact that it is not taken seriously with people constantly questioning your integrity and to have no affirmation of what you are experiencing on a daily basis is terrible.

    I go through the exact same with not only RLS but also the gambling caused by Mirapex. If you think people don’t believe RLS you should see how many do not believe that a drug can cause obsessive compulsive disorder(sexual addiction, gambling, shopping and drinking). However go and sit in a casino and watch how many parkinson’s patients are sitting there pushing the buttoms of the VLT’s. For anyone out there on requip sinnimet or mirapex and want to know about the gambling aspect just google mirapex and class action lawsuit!

  24. Steve says:

    You take amvery light-hearted cynical view as to the existence of RLS..for those of is who suffer from RLS there is nothing light about it..it is horrible! I dont know how i got it, perhaps from the anti-depressants prescribed by a psychiatrist years ago for chronic mild depression..what i do know is that when i take mirapex or requip i feel much better..so please a little compassion

  25. ” “Disease X may affect 7-10% of the population” when, in fact, no one had even heard of Disease X ten years ago, you have to be somewhat suspect.”

    This is from your article. I can tell you Disease X hadn’t been heard of however many years ago because there was no name for it yet, or diagnosis. I told my doctor 35 years ago about the trouble with my legs and he called it growing pains. Other doctors over the years just shrugged. It was there, just no-one knew what it was.

    • Donna Martin says:

      My condition was also called growing pains and just because something is common that does not make it not legit. For anyone out therewho wants to read about RLS there is an RLS website and foundation.

  26. Steven Funderburg says:

    I have suffered, and suffered considerably, since the age of 6 with RLS. Twenty years or so ago, I got onto Mirapex to combat it. In one way, it was a miracle; in another way, a curse. The RLS came under complete control. However, unknown to me, but observed by my wife, I became increasingly obessed with sex, especially pornography. But I couldn’t give up the Mirapex. My obsession with sex contributed in no small part to the downfall of my 40-year marriage to this dear woman, and I can’t help but feel that Mirapex was a major complicating factor. I am now trying to wean myself from Mirapex and onto Horizant. It has been tough going, because I presume that my body is so accustomed to its daily dose of Mirapex. However, after a month or so of cutting back on the Mirapex and administration of the daily dose of 600 mg Horizant, I feel that I may be getting back to myself both in terms of reduced obsessive tendencies and RLS control. If you are trying to use Horizant to control RLS, be sure to take it no later than 5:00 p.m. for in my experience, it takes about 4 hours to kick in. An unknown benefit that I may be experiencing is lack of RLS during the day, which has kept me from taking naps for all my life. But I’ll need more time to verify that.

    • Donna Martin says:

      I too went thru the same personality change on mirapex mine however being with gambling and partying. My family were at their wits ends but by then we knew that mirapex caused such problems and I am now involved in a lawsuit thru Thomson Rogers Law Firm in Toronto. Currrently I am on 25mg of fentanyl which is a very strong drug but does work amazing for RLS. It is also wonderful for Reflex sympathic Dystropy which I have in my right arm. It is however a depressant so I am on paroxetine which is an anti-depressant. I can tell you I feel relaxed for the first time in years and my gambling addiction is disappearing and my depression due to addiction is slowly going away Fentanyl is a narcotic but monitored properly it can certainly change your life.

      Donna Martin

    • Deansomnia says:

      I was also IRATE when I was reading the blog because it does really sound like it is saying that RLS is a joke. No, it doesn’t have anything to do with my comprehension skills. I see that he didn’t mean it that way, but if I found this so easily I bet there are others reading it every day and feeling incredibly insulted and leaving it before reaching the comments.

      This is a disease that can make a person quickly defensive because a severe case truly is horrible and no one gets it. I can see it causing suicide because it just plain makes me crazy when I have occasional nights when it doesn’t work or I forget to pick up my med refill. The closest comparison I can think of is that it’s like your legs being one big itch that is an inch below your skin so you can’t scratch it.

      I have been on Mirapex for about 12 years. I took 2mg/day for about 10 years and in that time I became more on more obsessed with tinkering with thing like bikes and computers.
      These are pretty safe obsessions, but I couldn’t stop and the house was always a disaster and that is the primary reason my wife took the kids and moved out. I went through 3 weeks of hell and got down to only needing 1mg/day and the obsessing got WAY better, but it’s still around somewhat. My RLS is now horrible because Mirapex makes it worse over time, but it is the only thing that has ever worked for me. I think I will look into Horizant.

      • complicatedwaltz says:

        Please look into consulting with Dr. Mark Buchfuhrer in Downey, CA. Wonderful doctor, he’s also written a few books on RLS.

  27. Jean says:

    the extreme itching is worse also….from my head to neck…even face…small bumps..full torso,,,even hands…under arms breasts, waist line….( any place where clothing fits tightly.)
    I have absolutely no fat or fluid beneath my skin. do not take any Rx meds…..except the 1 tiny SINGULAR pill.a day.
    Is there a cure for SMALL FIBER NEUROPATHY? Any one know why my extreme burn beneath skin happens only after being horizontal for usually an hour or so…and increases the longer I remain horizontal… I cannot sleep sitting up or on my back….I must still exercise or shower for releif ,,,to be able to return to sleep. am afraid to lay down during day for fear I will start to have these burn sensations while I am up. I am so grateful that my days are good.

  28. Have you ever considered creating an e-book or guest authoring
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