Hi all. Just read a short news blurb late last night on my phone news. It was about gabapentin being the new street drug here in the states. It wasn't a lengthy informative article-just bare facts- but they mentioned one can buy it on the street here for 75 cents/pill. Wondering has anyone seen more details about what's happening with this situation. I know it's in our rls med arsenal. Sounds like the powers that be here are lumping it into their 'opiod crisis'. I'm concerned that soon there will be no more meds available for rls pain control. Am seeing a new neurologist Apr 11 and am worried this new 'mission' by our government will make it harder for us to get help. Has anyone seen any info esp re new guidelines?. I wonder if the government is beginning another witch hunt. Not very trusting at this point. Will look for more info later today but wanted to share. No one in the administration seems to worry about limiting guns over here but God forbid we're able to get pain relief if we really need it! What's wrong with this picture? irina1975
Gabapentin now under scrutiny in the US. - Restless Legs Syn...
Gabapentin now under scrutiny in the US.
This has been discussed on a FB RLS group i belong to. Here is a article about it. nbcnews.com/storyline/ameri...
Thanks, Elisse. Will look it up later this morn. irina
Just looked up article. It sounded like the complete article where my 'blurb' info came from but was more informative. Thanks.
It's been abused in the UK & Ireland for about 10 years now.
GP's have been taking that into consideration when prescribing this past 7+ years.
Maybe a little more research should be done on evaluating patients so there would be some clear guidelines between those of us who take meds appropriately and those who abuse. I believe patients have some responsibility here to help docs know if we might abuse our prescriptions. I know my thoughts are about 'ideal conditions' and don't always apply to everyone or situation but this is what I do. In the US patient portals online are very common and give every healthcare provider access to my med care. Most of my docs use the same portal as they are all at one hospital. But with practices who use different portals (I have three) I have given my portal access info for all three including passwords to all my docs. I also am careful to use the same pharmacy for all meds. At times it would be convenient to use another but it's important for me for healthcare providers to access ALL my Rx and see I don't 'pharmacy hop'. Also, I don't call the pharmacy to see if I can fill a RX early (I take Xanax/alprazolam). I just write in my dayplanner when it is time to call in a refill. Before I began doing this, if I called to see if it was time to refill I would always, along with the answer, get a little sermon on early refills, addiction, blah, blah. With doctors able to access this info, even doctors that don't know me (ie E.R.) can see I have no history of abuse or game playing. Since I live in a bldg where maintenance has passkeys, I NEVER leave my apt without locking all my meds in a file cabinet. I don't want to have to explain why I 'lost my Rx'. Pointing these practices out to doctors at times has helped me get a pain Rx if I need it.
BTW are pharmaceutical companies allowed to advertise on tv/ mags/etc in the UK? They are here and do it with enthusiasm- well-designed tv ads, full page color ads in glossy magazines, etc. Lyrica is heavily advertised here. Most ads end with "Ask your doctor if (fill in the blank) is right for you." Maybe such smooth advertising should be looked at as part of the problem. It never will, I know. But I think pharmas should be held accountable.
Some ads are sneaking in mostly for mild pain relief and bowel problems not near the level the US has.
I agree, about holding Big pharma responsible - there'd be a lot less problems with their drugs and how they are prescribed.
If fewer patients were asking their docs re possible drug rx less docs would feel pressured to accommodate their requests. Ideally, docs would say 'no rx' if it were in the patient's best interest but competition is fierce here between docs/practices/free-standing health care facilities (spinal centers come to mind for example-big moneymakers) and some doctors' advertising also leaves a lot to be desired from a professional standpoint, IMO. There are a lot of layers re drug problems in the US to be peeled away. It is a big team effort with lots of shared responsibility but, as usual, our current political environment says" just cut your head off if you have a cold." Just my opinion!
They are not allowed here to advertise on the tv for strong meds of any kind. They are allowed for pain meds like aspirin and similar Or cold products. Oh and yes if you need a Imodium for tummy troubles. It works differently over here, we dont have doctor's practices like you all do where they are in competition with each other it seems. As you might know we have the NHS where all doctor's work under that system. There are Private doctor's if you wish to pay privately and can afford to do that.
Hazleton cannot get you high in any way. They also regulated Tramadol, and that doesn't get you high either. I meen gabapenton, not hazleton. Dang computer. LOL
Hi irina, I'm in the UK but I'm not surprised about gabapentin being the new street drug as pregabalin is over here and it's related to gabapentin. I honestly don't think the governments are up to anything but when you're on the other side medically there is hell to pay if you don't react to the evidence. The same applies to opiates. I was a Dr so I know the situation from both sides. I have dreadful RLS too.
I used to take pregabalin and was very pleased with it till the effect wore off and the side effects took over. When I retired I began to work in a charity shop and part of their ethos was trying to help rehabilitate prisoners for their release back into the community so they had spells working in the shop too. Some were determined to succeed and some were of the bragging variety who didn't care. They used to chat a lot. I was gobsmacked one day when one of these started boasting to me about pregabalin and it's availability and use on the streets and in prison. They took it in large doses. I kept very quiet.
So these things creep up on society and someone has to work out what to do to try to make the drugs less easily available. I think the changed the category pregabalin is classed under but it is still freely available for therapeutic purposes. Gabapentin is after all an antiepileptic as well and is used for various types of pain.
Basically the powers that be are damned if they do and damned if they don't in my opinion!
Hi, Alison. I agree with you about the seriousness of the problem and I believe the governments do have our best interests at heart most of the time on all issues not just healthcare. I am retired but worked as an R.N. almost 40 years in the states. I've worked with some wonderful doctors and currently have several excellent specialists that I trust and that keep me healthy. Especially my Electrophysiologist who often helps me with advice on how to handle my medical concerns that are not even in his specialty. He listens to me and sees me as a whole person not just an 'a-fib' patient. But (and I know this is not 'PC') now we have Trump who is not like any other President I have known in my adult life. IMO, he appears able to identify social problems but the solutions he puts forward are ones that, for me, lack compassion and frequently show little concern how his actions will impact average citizens. Probably I shouldn't have used the word 'government' to complain about our problems but rather been more specific and said 'our leader.' And I really believe that many of his proposed solutions stem from how to please the lobbyists from whom he received huge amounts of $$$ for his campaign. Just my opinion. Take care, irina
Hi again Irina, I can absolutely see how worrying that all is for you all in the US. Politicians in the main do seem to have hidden agendas and the one you describe must be frustrating and concerning for you all. Things are by no means perfect in the UK either ..... Brexit, what is this all about ........... But I was pretty amazed when I discovered what these folk from the prison used to say to me. Where on earth they have their sources I have no idea and find it worrying even to think about it. These guys described to me taking doses of Pregabalin at least 10 times what is regarded as therapeutic which seems to have other effects. It must be worrying when you have a competitive system in the US. It's obviously nothing as simple as folk taking a bit too much and asking for prescriptions early ie folk being addicted to their own prescription drugs, but there are sources out there, folk selling etc. Where on earth does it all come from? The folk who want to abuse or sell will always find a supply and the poor folk who are just taking things as prescribed for legitiimate therapeutic benefit are the ones who have the restriction. But what can the Drs do? At least in the UK I don't think gabapentin will be restricted or removed as it's such as useful drug, and also antiepileptic, though I do wonder if everyone who is on it for pain along with their other pain killers are really benefitting? I'm glad I'm retired and don't have to deal with these issues any more. One of our main issues here is cost effectiveness and the best use of public money. When I wanted to cut down and stop Pregabalin it took some persuading to get someone to prescribe me low dose tabs so I could cut down gradually - apparently 75mg tabs are cheaper than 3x25mg and the practices have big brother monitoring their costs!
I'm with you on the retirement angle. I am happy also to be retired. I miss being a nurse but I definitely don't miss the healthcare system structure here. (And the 'three-piece business suits- who have so much control over spending and profit.) When I started working in 1965 doctors were at the top of the decision-making process. Things were simple. Your job security hinged on whether or not the Chief (of Surgery in my case-worked in the Operating Room) believed you were doing a good job. Hospitals were 'not-for-profit' here. It was a different philosophy altogether. Now, often Dr's hands are tied. They have money-managers in their offices who seem to call many of the shots, insurance companies have much more of a say in what they will cover and for how much. In the last year I've seen how my own drs seem torn at times over offering prescriptions. They are under scrutiny which is as it should be. The difference is now, as you probably see in your news re the US, Trump's approach, IMO, seems to take a punishment approach to managing people and problems rather than 'how can we make this a win-win situation.' I 'm getting off my soapbox now. Thanks for listening. Take care. irina
Hi Alison. A word about our prison systems. Many are run by private corporations and have 'profit margin' built into their agendas. A friend of mine (my former coumadin nurse who managed my self testing and management) is now working in the prison system. From my understanding, prisoners can get pretty much anything they want in prison regarding contraband. The guards are a big part of this supply system. Low salaries and money talk!
All rather worrying and we are helpless to do anything about it. I think I find it easier these days not to think too much though wasn't always the way. I hope all your medical matters can be solved without the intervention of those ignorant of the issues ( or is that pie in the sky? ). Anyway, time to go back to thinking positive!
I think there's a light at the end of my tunnel. I sometimes make my life harder because I've never been a "Yes, Doctor" person. Fortunately I've surrounded myself with docs who think outside the box and allow me to be part of my treatment team. Even my thyroid probs are because I made the choice to let my GP handle them. She's good in so many ways; she just can't let go of the almighty TSH result. But I saw my EP last week and told him I need a really good endo with an open mind. He gave me a referral and he's always come thru for me. He knows I will do what I think best. I made a verbal contract with him when I first went into a-fib in 2011. (I've had a successful ablation, a pacemaker. And am off all meds and very stable. In Jan this year had a Watchman Procedure. Doing fine, off coumadin and will be off plavix in July. Glad I did it.) I would do what he recommended if it made sense and if I didn't agree I would always level with him. He's brilliant and a cut above as a person. The other appt for next week is with a neurologist about rls. I found him thru a member of this forum who also lives in Atlanta and has had good luck with him. A bonus: this neurologist also has rls. So am on the right track. And I know I can be one of those 'difficult nurse patients'. (LOL) And you're right. Back to positive thinking. I live in a beautiful high rise senior bldg and if I start to feel sorry for myself I just have to look around! Take care. irina
Sounds very good to me. Think I can definitely be one of those 'difficult Dr patients'! Funnily enough I've also had thyroid problems. I think we all need a Dr with RLS as well. Think that's the best way to keep the research going, and also hoping they think out of the box, to find the right answer. The answers we have just now are some sort of improvement ( perhaps ) but not nearly good enough.
I'll be interested to know what your neurologist thinks about it all.
Will keep you posted. It was a stroke of luck to have found him. He is with the sleep clinic at Emory University here in Atlanta. Very often, it takes someone with the same problems to have the motivation to find new solutions. I do have a sleep doctor but he is a pulmonologist and I believe he sees rls from a different perspective. Am excited re this consult; have my index cards with questions, etc. ready. I've done a lot of research and reading to prepare for this appt. I had to wait almost 2 months from the time I scheduled as he was so booked. The word must be out! Hopefully a good sign.
A good sign indeed. Fingers crossed. I wrote the other day too about the fact that my RLS has receded twice while I've been ill, and following a current bout of fever and cough ( still ongoing ) it still is. Apparently this is a recognised but not widely known situation. If only this could be researched it might be the answer. Anyone who has contact with anyone with access to research funds please ask!
I read some recent posts about this phenomenon and it happened to me. Usually I never sleep more then 3 consecutive hours a night (I'm up now! 3am) Sleep isn't a problem as I'm retired and live alone so can catnap prn. Anyway On Jan 15th I had the Watchman Procedure done with an overnight stay. Very smooth, uncomplicated and painless. But I asked my surgeon if he would order one strong pain shot to get me through the 6 hours post-op that I had to not move my legs because of the femoral incision. He did and I was able to lie still without problems. Then it was back to my usual pattern. We had bad weather that week and the next evening at home I felt feverish and achey.Long story short, it took me a day to be able to get to the ER-my temp was 101. In the ER they tested me and I had Influenza A. Evidently over here there were 4 strains of flu that our flu vaccine didn't cover this season. I was in the hospital 3 days and was d/c'd early because the hospital was overflowing with flu pts. So I had 2 more days of flu. As bad as I felt I slept constantly and straight thru with no rls sx at all. I didn't connect the dots til I read similar comments here. Wouldn't it be wonderful if this info was the beginning of a new medical discovery? I hope so. I will be sure to mention this to the new neurologist next week. Also that people have mentioned it on this site. Maybe he will be more open to anecdotal info as he is an rls patient also. Thanks for reminding me.
Gosh, you too! It's fascinating. I wrote to Dr Bruchfhurer from California who answers email enquiries re RLS. He replied that it was a fact that those who treated folk with RLS recognised from anecdotes from patients but which is little known. They don't know why and suggest fever is necessary - but of course it may not be fever that is the issue. I so wish someone would look into this properly, however long it takes. Like you 3 consecutive hours is normally the max i can manage and that is usually towards the morning and it can often be only 1-2 hours or less. Fingers crossed again!
Do you find when you've been up at night that you are able to sleep again for a few hours when it begins to get light? I do and actually get my best and deepest sleep in the early morning hours after dawn. Also, when I can (no errands, appts, etc.) I can take a really good nap around 1-2PM when the day is at its brightest. Weird! This doesn't bother me so much. I've come to grips with sometimes being up most of night. I clean, cook, post, etc.listen to my playlists (very calming). I just tell myself being up is like working nights. I feel badly for people with jobs, children, families, as they must be so sleep-deprived. I'm thinking maybe there is a connection between our nervous system and higher body temperatures. It would also be interesting to gather more data on patients re similar personality traits (type A personalities, etc) and other diagnoses (ADD , etc.), left-handed vs right-handed), additives, chemicals in foods. We know a lot about diet, nutritional status, vitamin deficiciencies but not enough. I wish I knew someone who is in research and interested in 'off-the-wall' theories. I am such an information junkie-would like to share my thoughts. I plan to ask the new neurologist if he is gathering data. He is welcome to 'pick my brain' for free. LOL (Such as it is!). I love people who think outside the box. My EP and I have interesting conversations about all sorts of things on my visits. He shared with me the following anecdote-which I think helps make him such a great doctor. He said when he was a kid his parents told him he not only thought outside the box, he BROKE the box! Well,, it's 8am and light-back to sleep for a couple more hours. Goodnight.
Yes, definitely easier to sleep towards the morning. When I wasn't so bad I used to be relieved when it was 3am as i would think 'good, I'll get some sleep now' - that was the situation when I was working and I hope the same applies to the others of working age. But now it will often be later, say from around 5.30 or 6 or on the worst nights not much at all. But yes, then during the day say after lunch I can sleep like a log in blissful stillness. If I didn't I doubt I'd function! I would love if you could share your thoughts to researchers. There has to be an answer. Surely if we could all supply as much info as possible, with eg the info about illness too and a raft of bloods and scans were done to check for multiple things - it has to be to do with something which varies during the 24hrs and also varies when ill, and we all have very similar stories, especially if we haven't suffered from augmentation and are therefore in the unaltered state. I think I augmented after taking Pregabalin and was never the same again.
It must be solvable and it has to be solved! If the genome can be solved and various traits allocated to various genes by questioning vast numbers of people, then questioning the vast numbers who have RLS and someone doing a raft of computer analysis must be some sort of help surely
I'm sending you a PM. irina
It's a witch hunt in my opinion. Tramadol is on the chopping block as well, I'm sure.
Yes re lentils and bananas - he is actually referring to the resistant starch which is in those foods. With bananas they have to be green as when ripe they don't have resistant starch. Potatoes when they are cold are full of resistant starch - hardly any in the hot which is why potato salad is so good. Eating beans, lentils, pasta cold also increases their resistant starch which is what our gut bacteria eat. Not so easy in winter….
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