INFO FROM SUPPORT GROUP ON 1-19-13

I'm A new member here

Just happened by chance to see there was a support group in my local area

So I went. It was run by a recent member on the Board of Directors the RLS Foundation.

They also had a doctor who works with RLS Pts so I was pretty excited that I may get some good advice

Turns out the doctor confirmed what I thought was going on with the Requip I've been taking

I'm having an augmentation effect

Worked well for a few weeks and then POW

Now worse than ever and starting earlier

In the day

He was so nice wanted me to go see him for treatment

Wanted to start me on the new drug Horizant

Said he has many Pts get great relief from it

Guess what my luck? He can't take my insurance because I have an HMO

I asked him if my PCP could prescribe it and he said probably not because insurance companies will only consider it if it is prescribed by a specialist

WHY is life so hard?

All I want is a little sleep

I truly don't know how much I can take

The group leader reminded use that funding for research is low priority because RLS is not a fatal disease.....REALLY?

If your anything like me I think sometimes of jumping off a bridge

Unfortunately for me that's not an option

I would hurt too many people who I love

Sometimes I wish I didn't have a conscience??

41 Replies

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  • In case anyone in the UK reads this, we cant get Horizant over here. Just saying, so on one decides they might give that med a go....

  • I am sorry to hear of your difficulties and how you are feeling. At least you have a support group now. I think all of us find ourselves in the situation where neds are not working as well as they initially did and it does seem that they have to be changed with caution. Any how the note above states that Horizant is not available here so you would have to discount that one. There are other meds availailable. I have chronic RLS and am just writing to my doctor regarding my meds. Is your RLS painfal? If your Neurologist is an expert and there are very few that specialise in RLS, then they will understand your feelings and you should tell them about then. I do wish you all the luck in the world because RLS is a fight really.

  • Horizant is a drug that just came out last year in the US. have you ever tried Gabapentin which is available in the UK. KIn dof the ame kind ofb med, but is time released and is absorbed by your bowel, so it may work better with better absorption for some. It is a "pro-drug" meaing it goes in as one (Lyrica) and the drug "turns into gabapentin in the bowels:"

    It is not anew drug just a new formula for an old drug. have you tried Gabapentin? It wold make sense to try that first, and easier to get because the NHS says it is cheaper.. I am in the US, but learning about the UK medical system a LOT from this group. ;) Gabapentin Encarbil is the oficial generic name for it in the US. drugs.com webmd.com rlshelp.org and rls.org are all good web sites that have info on Horizant.

  • Hello N.D, I'm taking Gabapentin now for about a year + have increased,

    the dose to 4 cap's a day (i think it's 1,000mg 250mg per cap??),

    Anyway this med has really worked out for me so-far???.

    So as always it trail + error with med's what works for me might not for,

    you???. BUT i would give it a go!!!

  • I have tried every med on and off the list that night even "posssibly" help RLS over the last 17 yrs. Like I say, all meds are not the samwe for all people, and we cannot say it any clearer than that. We are telling what we know as to what has happened with our own RLS and talking to other sufferers in groups such as this. BUT, there are lists of drugs and foods to avoid" that should be considered universal for rLS, or for my most unpopluar answer 99% of us. that is 99% of the people I know, not 99% of all the people in the world like someone said I was saying yesterday. So, when we read answers and ask questions we have to expect thast we will hear the personal stories as well as all the references we provide to guide people to the RIGHT web sites. ;) I barely put a post up any more that does not have referenbces to back me up, and prove what I am saying. When I quote a study, I can only way what the study said, in truth. If the study was negative, then so are the remarks. It all goes together. One thing me and I my groups address every day is that we all have out own stories and we take from those what we like and ned. But, we are not always going to LIKE the answers we get, because we do NOT know the cause. I say we are as far away from that as we have ever been. And, the US name change is going to make it worse, and that is MY opinion as well as literally thosands of other RLS patients. Willis Ekbom Disease is not going to help anything further along, except that we are getting rid of the word syndrome, which is KEY. But, it will always be RLS to me, my groups names will never change, because most newbies would never have a clue to look uyp willis Ekbom disease. Try googling it. Nothing but wedding planners come up (WED) anmd you have tp go thru 5 pages` of results on yahoo before WED come up as anything connected with a neurolgical disease. soe literature is being changed around "also known as Willis Ekbom Disease (and they shoud,add only inthe US and Canada, because the USRLSF has partnered with Canada for thys name change thing. no other country, and I mean no one else is making this change so it is rather presumptious iof a few orgs to say that they can juts change the name, because the older one ha dtooo many jokes made about it. That was 7 YEARS ago, when we had the influx of jokes and all kinds of crap going around. It has lessened to an extent because of a decade of serious awareness work done by all of us. I am rambling,but it's all true. :)

  • I have said that countless times. I KNOW what works for me does not work for everyone. Trial and error is a term we have used for decades, and too bad we still have to use it, right? as long as it keeps working for you, then great! That makes me happy. ;) But, we also have to pre[ared with thwe knowledge that RLS ~is progressive and that our meds MIGHT stop working at some point, and that is when we talk about drug "hoildays". so, wish you good luck, and I hope you have continued success in your RLS treatment.

  • By the way, I gave Gabapentin a "go" for 8 months, gained 60 lbs and it did not help MY PERSONAL RLS at all. None of that class of meds or the dopamnine meds help me at all, hence why I have had to do some much research and spend a decade building a team of doctors that will help me.

  • "kind of the same kind of med" sorry for typos. Wish we could edit our posts. We can edit an original post, but not a reply. ;(

  • welcome to the site Ylla33 :) sorry you had to find us though but i'm sure you'll find some info on here most useful :) and some not so but as always what works for one doesn't always work for another sadly ..... and then there's some meds that'll work for so long then stop just as suddenly :(

    we're all here for the same reason in search of something that makes life just that little bit easier as for up to now no cure has been found ,

    Each one of use try in our own ways to deal with RLS some may sound a bit weird or even funny but............long it work for you or them then so be it ,,,, what you'll find is that most of us have a sense of humour sometimes the best way to deal with a crappy day ....

    i totally understand the last part of your comment that feeling crossed my mind many times and like you my first thoughts are those that i love and so keeping them in mind keeps me strong and never let RLS win me over im in charge not it .... :)

    keep strong keep smiling :) hope you find your own way to deal with RLS who knows you might find one and share it with the rest of us and find it works for someone else too that's what this site is for learning and sharing .....

    good luck :)

  • I also agree with you about the doc and him saying hat "RLS is not a fatal disease" again awareness must be spread. NO, RLS itself will not kill you, BUT, severe slep deprivation can. Why do they think slep deprivation is the most effective torture? Because it works best, that's why. Severe slep deprivation can affect blood pressure, your heart, mental stae, daytie drowsiness and drowsy driving which DOES kill. my doc and i had that converstion several years ago. Sleep deprivation kills and depression can kill, and jumping out of a window can kill, (been close to that one!) so, I totally know what you mean!!! And, you are sadly not alone in this, but we are all here together and helping each other stay sane. ;)

  • I forgot to add that I watched a video study comparing drowsy driving to drunk driving. In EVERY case, the people were eiother legally drunk or had gone 36 hrs with no sleep. The drunks won every time, meaning drowsy driving is an epidemic and very dangerous.

  • hi, and welcome, love to have newbies here, fresh opinions and advice are allways welcome :) and we can also have a good gripe

  • If i have read it right, the person who's blog it is. i believe is from the USA, hence the reference to the Board of Directors at the RLS Foundation.

    I put my info about Horizant, for those in the UK so they wouldnt run to their doctors to ask for it....LOL..

  • When my RLS was very bad, before I found the wonderful pramipexole, I thought of lying with my legs across a railway line. In my sleep deprived confusion I thought it would punish my legs for what they did to me.

    Have you tried Pramipexole? It saved my life.

  • Have had similar thoughts for sure, but then remember my Grandfather in agony with "phantom" pains following his leg amputation (not by a train!). We had to scratch his imaginary foot to give him relief. Can you imagine not being able to 'walk it off'? Guess I'll keep 'em :-) Glad Pramipexole is working for you! I find amazing and reliable relief with the Neupro patch.

  • My dad was amputated like a barbie doll without a leg...

    super high amputation. His phantom leg always hurt,

    was twisted, itched, burned... that poor man lived in

    agony for at least 10 yrs before he passed away. It wasn't

    a good life for him. I do know what you mean.. they gave

    him nothing to cope with that feeling. Rubbing his lower

    back was the only near relief that he ever felt.

  • Nobody should have to suffer like that! How sad. The brain is such a complicated thing. Sweet that you were able to help him through it.

  • just tried the patches 3mg ones did.nt seem to give me relief after 2 weeks gave up can you tell me how long you were on the patches before you started getting relief thinking that i should of giving them more time. back to square one at the doctors lack of sleep now and feeling really low and depressed

  • If the 3mg patch wasnt working after 2 weeks, then it wasnt ever going to work for you....It only takes 24hrs for that med to get into your system. Some meds need to build up to get relief, but not the patch.

  • It only took about 6 hours to give me relief. I've used up to 4mg patches. Now I'm using the 3mg ones. It's sad that you didn't get help from them :-( I sometimes run into trouble because they don't stay firmly attached -- so I use duck tape to hold them in place. I get the depression thing. Lack of sleep is so draining. I wish you the best of luck.....

  • what dosage have you been given i was 2x0.52 tabs stopped working doctor told me that was the max i could take

  • The leaflet should tell you the max dose to take for RLS.

  • Hello Ylla, Welcome here, I'm from The Netherlands and have also RLS for many years, I'm 65 now and tried many medicines and most of them gave me augmentation. I'm now on Pramipexole, they work for 24 hours, I take 3 tablets at 7. pm and I can sleep, for me it's heaven at the moment. Like Patchworker said: It saved my live. I wish you the same!!

  • hi i to was on pramipexole 2x 0.52 tabs but stopped working doctor told me that was the the highest dose he could give me can you tell me what dosage you take please

  • yes it is the prolonged ones seen doctor again this week with a video my wife and children took of me having a nap on settee could.nt believe how much my legs actually moved shocked me decided to send me for ct scan which is a wait unless i go private to push things on anyone have any idea of the cost if i go private or will the shock be to much for me lol

  • looks like a long wait for nhs tratment then lots more walking the floors and crawling up the walls never mind a cure may be found one day to release us all from this curse cast upon us

  • evanendennis, I am jealous. Wish that it worked like that for me.

    Without Pramipexole, I am the worst of the worst sufferer. It's

    bringing me to a level of being able to cope with the constant moving..

    but it's nowhere near total relief. Lucky YOU.. =)))

  • On ething we should do, sinc ethis is a UK based web site, if we are from the US and talking about certain meds we need to identify our country and where we get our meds. some meds are not available or appoved everywhere, so like Elisse said, we do not want people running to their doc in the UK asking for med that is only approved in the US and Japan, so far. We hav eto keep our countries straight AND especially the FOUNDATIONS. The US`one cannot speak for the UK one, for sure, because not all agree with what is going on, and there are differnt meds, different health care systems, etc. Make a bhuge differnce and causesa ot fo confusion, and I know from all theb PM's I get from this group. so from now on, I will sighn USA after my name, so we know what part of the world we are dealing with, even though I am learning as lot from my UK RLS friends. A LOT!! ;)

    Cheers and have a good day! It is Inauguration Day today here, so big doings! ;)

    Donna Mc/USA

  • i knew she was from USA as i checked first ! plus the way the date was wrote is a big clue !

  • oh, I have got to get on a regular sized keyboard. driving myself nuts with these typos and we cannot "edit" replies, only original posts. Wish that could get changed somehow?? Will put this in a separate question. :)

  • Yes my dear .....you are quite difficult to understand at the moment ha ha ......I wonder if I can change my name to add UK to it.....I'll go see....that would be good if we could all do it !

  • No...it won't let me change my name...

  • I just add it at the end. ;)

  • I mean to but forget!

  • SO MANY OF US CAN EMPATHIZE WITH WHAT YOU SAID. NOW, AS FAR AS THE MED HORIZANT GOES, IT GAVE ME MORE SIDE EFFECTS THAN REQUIP. HAVE YOU INVESTIGAGED THE PATCH. THAT IS WORKING FOR ME...KNOCK ON WOOD.

    I THINK THERE ARE MANY WHO DONT RELEALIZE THAT MANY WHO HAVE RLS ALSO HAVE LOW IRON AND VIT. B12. AT LEAST THATS TRUE FOR ME. I AM ON A THERAPUTIC DOSE OF IRON AND B12. IF YOU HAVENT HAD THOSE BLOOD LEVELS CHECKED, YOU MIGHT CONSIDER IT.

    THE OTHER PART OF THIS IS DIET. IF I EAT GLLUTON, LARGE DOSES OF SALT AND SUGAR. I AM TOAST. SO FOR ME IT IS AN AWARENESS OF ALL THE ABOVE WORKING IN CONCERT AND IN THE PAST COUPLE OF MONTHS I AM MUCH BETTER.

    AND THE ACCEPTANCE THIS IS A LIFE LONG THORN IN MY SIDE...THE FATIGUE IS ALWAYS THERE. AMEN. ASI ES LA VIDA.

    WISH YOU THE BEST AT FINDING SOME KIND OF ''COCKTAIL'' THAT WORKS FOR YOU. SANDRA

  • Hi, Im new to this site to, and really do feel your pain, its an awful thing to live with but somehow we remain strong, i use a lot of humour to get me by with how dopey and clumsy and unable to think straight i am some days...my kids say...''mum why is your brain not working today ?' and i tell them its jumped ship again, this is when i walk into doors, cant form a sentence properly , bump into people on the pavement, nearly get run over by cars ect ect ect ...Im in Uk Scotland and doc gave me Ropinarole which is working well...for now ! if you dont know it its a Parkinsons medication, which works on the dopamine levels and seems to provide me with relief , getting a few hours sleep a night now ...pheweeee...stay sane, laugh lots and kick it in the butt :) ps anyone know of a support group on Scotland ? Ive not been able to find one ? thanks

  • Hello nick-the-turk, the dose I take is 0.26 mg and I take 3 tablets per day.

  • I have suffered with RSL for 30 years I am now 74 years old and it has been getting worse over the last 20years I have a very understanding Doctor but medication does not seem to work for very long. I am seeing a Neuroligst in six weeks first time I have been referred. I am so fed up with sleepless nights, my poor husband now sleeps in another room so at least he can have a good nights sleep

  • Hi tunstall, sorry to hear that all the meds you have tried havent worked for very long. There are a few that seem to do that, mostly the dopamine agonist ones. They cause augmentation, thats where the med stops working and usually starts to make the RLS worse.

    Hope you get something to help you from the neurologist.

    Keep us informed, we like to know how members are doing.

  • Hi new person, I find my RSL gets worse if my legs are cold, so I keep them well wrapped up

    even in the house I have a blanket around my legs. I am taking Tramadol in the evening so far this has worked for me. I hope you find something that works for you soon, there is nothing to compare with the RSL aliens that take over your legs especially at night. Good Luck, Keep smiling. sandra

  • hi ylla333 and others, I too, am a newbie but finding this site invaluable. I'm trying new things and it's helping. Doc offered me meds but I'm trying to do it naturally (not against meds at all, i'd take anything if it helped) but the MAGNESIUM PHOSPHATE is really helping (see my post 2 days ago) & hoping it's my solution but as everyone says this condition is a nasty little beggar and just when you think you've got it beat back it comes, with a "ok, try again....!!" The past weeks have been awful but I'm trying to do what others on this site have suggested and not to let it control me. Sooooooo easier said than done, but get bloody minded. I'm glad you have your family, whatever happens keep them in mind. all best wishes.

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