Hi all just joined today to ask a question but here is some history first:
I have been suffering with RLS my entire life, (my parents have told me of taking me to the Dr about it as a child before I can remember and being told it was growing pains). I never sought treatment/help until my 30's as I thought it was a 'normal' and dysfunctional part of me as I knew no one else with it.
Well the internet allowed me to educate myself and since then I have spoken about it with my Gp who also suffers from a mild form of it. I tried Miripexin which initially worked great but as the dose had to be increased my thoughts becomes very disturbing so I had to stop. I also got rebound symptoms and now I feel the restlessness in my shoulders and arms too
Any way after an accident I ended up on Tramadol for the pain and low and behold it worked GREAT for the RLS. However as these things go it became less effective and I took myself off them cold turkey, (that was a rough few weeks). After speaking with my GP I commenced Gabapentin which worked great at pain but has done nothing for my RLS.
SO yesterday spoke AGAIN with my GP and he commenced me on Prozac! He said he has had moderate success with it but from everywhere I can read it is meant to exacerbate RLS.
Surely there is limited to no benefit from an SSRI for RLS?
Try your three earlier drugs together in a combination but use very low dose of each.
Thanks for the reply Swedish.
My GP had hinted at using Tramadol at low doses. The Gabapentin is at 300 mg x 3 times a day so I could add in the Tramdol.
I am very, very reluctant to recommence the Mirapexin - the side effects were nasty. I could maybe try Levodopa instead?
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Hi raffs, Prozac will make RLS worse in the vast majority of sufferers.Levodopa is not used much now as it has high rates of Augmentation. Go to rlshelp.org (although an American site much is relevant, go to treatments. Or try RLS-Uk.org
for info on various med . Basically in the dopamine range there is mainly Requip, Mirapexin and Neupro patch.In anti convulsant type there is Gabapentin and Pregablin and then theres painkillers such as Tramadol , codeine and Opiates.Some people also use sleeping tablet type meds.Get your Ferratin iron checked, its a blood test and needs to be around 70.Sadly we have to educate ourselves as many GPs and Neurologists have little knowledge or interest in Restless Legs , Good Luck ...pipps x
Prozac is more of a coping medicine. Guess that it will help you cope better with the effects of rls as it used to with me (mine was Paxil- same family as Prozac) Some may tell you that it's going to make rls worse.. I didn't believe anyone and dreaded life without Paxil but when push came to shove and there wasn't anything that I didn't try, I gave up Paxil...went great except the panic attacks came back for me which was why I was taking it in the first place..
Months went by and now I am in a deep depression Funk.. ready to go back on Paxil again.
I've tried several of the other anti d's only to end up sick, worse depressed or even having those scary thoughts about an impending death that even today I think is only days away..
My doctor is waiting on re-prescribing it for me. He feels that a group of doctors that
never met me before will know much better what's best for me.. Seems that I have a
little fight in me after-all to say "I'll show you...." I sure felt a whole lot better energetically on Paxil, I had a life and didn't mind having social interaction .. right now, I may as well be truly living under a rock.. I do not even like being by anyone except my kids, my mom and especially my husband.. I feel quite anti social.. more than normal.. RLS is there but in the background for me as opposed to being on Paxil and having RLS rule my life..
Anyone who does not have RLS thinks that it's half behavior, half a coping problem..
they can't understand what not being able to get comfortable means for sleeping..
they couldn't know what it means that the brain has to stay on alert to keep the limb
moving or that you must walk to relieve it.. they think..?Fine get your walk in early and
then go to bed.. or you need to stop sitting and move all day long.. or head to the
gym to tire the legs out.. " I say that my legs have insomnia.. just my legs.. while
my mind is in a fog from following the legs orders.. Sounds stupid, I know but it's
my way of telling it like it is to anyone who wants to know what the hell is wrong with
me that I am tired all the time or that I don't stay in bed at night..
If I could just make the advertisement of my legs at a dancing party all night while
I am chasing them around with Ghost legs... lol That's what it feels like for me when
I do have it.. and my body looks and acts that way at work the next day.. as it should..
exhausted.
For me, it's depression/panic attacks (3 or 4 every 24 hours) or RLS -- mostly drug induced.
XX Karen
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Understand every word Karen, I cannot live without Paxil xx
I have the power to go back on Paxil . My medicine cabinet has recent prescriptions. The mail pharmacy keeps sending it to me. I just do not have it in me to fib to my doctor. That's just a bad thing to do and he would know. I bite the inside lower lip. He would know. My eyes tell it too. I can't look him in the face or anyone else either until I come clean. Pain pills allow for me to survive life without paxil. I use them 93% of the time for pain over an 8 and 7% of the time for my 3rd hard panic attack of the day. RLS doesn't come near me on pain pills. I RESPECT the power of them. Panic lessens, doesn't stop.
Dark depression is sealing down on me today. It might just be the day. I've not ever had it like l do today. Research teaches me to be hopeless unless l look back to see how far we've come in just 10 years. Fear takes over me too. I will be someone else's experiment with controlling the pain with neuropathy. I'm too young to have it like I do. It hit fast and fierce. Having a background in research and seeing some late stages go bad, l fear. One big company took the participants into a room with lawyers and got out the checkbook saying *how much money do you want giving them one shot to answer and if the figure was in the ballpark, they had the participant sign that it was settled. You can imagine the pressure in that room. Take the money today as a gift for helping our research because you knew that it was experimental......and signed the waiver.... their clinical names were flower and skater so they couldn't find each other.. the participants, that is... l don't want that to become my reality or in finding the cure, then having the medicine go away because the project closes.. well anyway, that's the bug up my arse ...so to speak...ugh, just tell me to go back on Paxil. I'm depressed.
Yikes, you'll have to adapt to the facts that it will come and go the rest of your life. I am 77 years old and had the first event when I was 16 yrs old. I didn't know what it was until I became a Churchill fan and found he was afflicted with it. He even named it. He'd say the ''Black Dog'' was present again. That is what I've done. I spent 3 yrs from 27 to 30 which were so bad I'd debate with myself whether to step onto the commuter train or in front of it. Unfoirtonately my only son and two of his sons have inherited the tendancy. All three of them use intense exercise to endure the bouts. We have all taken Seritonion re uptake inhibitors with limited success. We have all found other ways to endure and I advise sufferers to do the same. Don't end it---I didn't and I am glad. ( I married a woman who has been at my side thru it all for 59 years) I don't know how she endured it.
My mother has them, My sister, one brother have them, a niece and one of my daughters have them. Each one is handling them differently. For me, Paxil kept them away for years and years.. never had a single one. Yesterday it was like boom, boom, boom, ...........boom. I was at rock bottom for depression too - still am for it's dark, freezing rain, just yucky again.
Went into the urgent care with my bottle of Paxil to encourage the doctor to say "yes, start taking them" but we agreed on waiting for Mayo to come and go before I will start back up on it if Mayo Agrees and doctor thinks that Mayo will say yes.
As for depression, I walk away with being told to get outside and walk, drink fluids, eat light and right,. After i did get home , Thanks for your sincere concern. I needed the encouraging words, still do. Most of it is that all medicines were taken from me..anti d's were with me a long time. Will keep you posted.
Sometimes, taking the anti-depressant is a must, even if it is known to make your RLS worse and any other anti-d does not work for you. Even Dr. B says that. x
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I am that case Elisse. It's catch 22 for me.. treat one and the other will act up.
My heart goes out to you Karen. Prozac and a later anti-depressant didn't work for me, but you know best. I do take 5mgs of temazepam if I am in a crying mood which seems to help me a bit.
Will start another thread for current situation. All good thoughts wing their way to you .
Funnfennel, you don't have to take it everyday? I didn't know that anything
was available for a one day - or bad day, The temazepam or the "pam" drugs tell me that it's a fast acting muscle relaxer.. that works just like a sleeping pill for me.
Now just think if they legalized "weed" across the nation.. we wouldn't need the other drugs. I , myself tried it for the pain control.. I still choke on the entire smoking process.
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We have to remember that not everything out there will work for everyone. I have tried weed in the past and i know that others have too, and it didnt work for me nor for the other people i know who have tried it. Yikes, you MUST know there are other ways to use the weed other than inhaling.
I believe it is called Restoril in the States. Doctors here do not like to prescribe it but my consultant lets me have it for "sometime" use so as not to become addicted. It is, as another member said, another drug to use. I take 5mgs when needed.
Yes, Restoril is mostly prescribed for sleep in the US. I take Flurazepam, so it is in the "zepam" family for sleep.
I did say to the Dr that I was struggling, and I am. Although one of the reasons I stopped the Tramadol is due to it working on the Serotonin receptors and I didn't want anything that altered my mood - and now I'm taking an antidepressant!!!
I know I am not depressed, (or anything close to it) and RLS aside my life is pretty good so I would question the mood elevating aspects of it but I am willing to try ANYTHING that could potentially help the RLS.
No matter what anyone tells you, RLS is genetic. I have seen it thru several generations of my mother's family. It also seems to be X cromasome transmitted, meaning we get it from our mothers if we are male and as males we only transmit it to our female children. The Y is male and has very little genetic information on it except to tell the fetus to be male.
The earliest records of RLS appears to be from Eastern European Jews. If you do a genetic test with the firm of 23 and me you'll probably find ancestorie of Ascanazi (probably spelled wrong) Jews in your past.
I have suffered the illness since I was in my 30's and had a great grandmother on both sides of my family who was Jewish.
Look around and you'll find me to be correct. My Neurologist is a retired professor from Northwestern Medical School in Chicago and is extremely bright. He said isolated groups who will by their closeness intermarry a cousin either by accident or on purpose and the gene will pervade the group. Examples are the Eastern European Jews, Cajuns from Louisiana USA, French Canadians, Icelandic's, and Applachians from the plateau in the USA. There is a jewish woman in all their history and it was spread by marrying relatives.
RLS isnt genetic for everybody. Strange that, i inherited it from my father, but my brother also has it, inherited from our father... so males pass the gene on to males.
How do you know your mom was not a carrier without the condition? She has two x cromasomes and your dad has one, so he wouldn't pass it along to males if the experts are correct, but would pass the trait to any girls and if she got a bad x from dad and a bad x from mom. Boom, the girl has two bad x's and would surely have the disease. Your mom could well have one good and one bad X and not have the disease or only have a lite case.
I don't wish to be argumentative but it takes a lot of understanding and no predgedice. I am no expert, but associate with some smart scientists and listen to their conversations.
My mother passed along a lot of really bad stuff. I am a bleeder, missing a clotting element and 4 brothers didn't have the condition. The luck of the draw or the ''shot in the dark'' if you will.
RKS is genetic in about 65% of all cases. Other cases are secondary RLS, caused by an underlying condition like pregnancy, possibly a low ferritin level, or taking the wrong meds. My two sisters, both nieces, and both my oldest niece's kids and I all have RLS and PLMD. One of my parents had the gene, but nothing triggered it for them, but at least one of them have to have the recessive gene. The RLS genes were discovered in 2005 and 2007. But, not all cases are genetic, for general information.
Hi raffs, There is such a variation in what sufferers find helpful I just offer my experience. I have had mild to moderate RLS for 30 odd years. Eight months ago I was prescribed Prozac and found RLS got a lot worse. I then fell and cracked ribs and was prescribed Tramadol and the RLS disappeared. However I read on the internet that these meds should not be taken together and stopped the Prozac. I also read and it was my experience that Prozac makes RLS worse. I asked about Requip, my sister has Parkinson's, doctor said he didn't want to go down that road at this stage. I looked to see what else might help increase dopamine levels and 5 HPT was suggested. As I had bought this for depression I may give this a try after Christmas. I am going along with iron supplement to increase oxygen transport and vit E for circulation. It is all trial and error. Take care.
For what it's worth, I used to take melatonin, which I believe is a precursor to 5HTP (or the other way around) and it was the most wicked of all the drugs in terms of making RLS worse. It gave me restless body to the point of thinking I had Tourettes when I would lay down. But I was on a high dose of it - 3mg. Although someone on here said they take 5mg. Can't even imagine. Be very careful. Melatonin (and maybe 5HTP) are direct competitors of dopamine.
I suppose I should update!!
The Prozac demented me. The relief I was getting through Kratom vanished and although I was awake more it did bugger all else.
The Dr has since started me on Mirtazapine and although I slept for the first two nights I haven't for the last two. Also the Mirtazipine is starting to make the legs worse
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RLS for 15 years. Now I avoid dairy and have eliminated RLS/ Periodic Limb Movement
Desperate for some quality sleep
It worked for me, so I'll try to tell you all about it again.
Amitriptyline
Over the counter meds?????
