Hi .. My name is Betsy and I have RLS

[hiattbj57]

My Doctor has given me 3 different dopamine drugs in the last 6 months and I have not been able to tolerate any of them even at the lowest 0.25 dose . I felt explosions in my head when falling asleep , and after that woke up every hour . I was so confused the next day I forgot what I was doing all the next day . Is that all there is ? RLS is a horrible feeling but the dopamine drugs are worse . I haven't taken anything the last 2 nights and this morning I have RLS all over . I had some left over gabupentin from back Surgury and thought that might help . Please let this go away.

[Hidden]

Some people can take Gabapentin with success. Its all a matter of trial and error to see what will work.

[hiattbj57 in reply to Hidden]

I'm so glad to have found this site .. My PA is just going trial and error on me and my nervous system has gone crazy . Thank you ❤️

[Pippins2]

As Elisse has said Gabapentin works very well for some but not at for others (didn't work for me .Painkillers work on the urge to move sensations as well as on pain so you could try Codeine or Tramadol. Do you take any medications for anything else as many can make RLS much worse? ..Pipps x

[hm523]

I went through the same series of side effects with Pramipexole, Ropinirole, Gabapentin, Neupro patch, and Klonopin (all at the lowest doses). Crazy stuff. I am finally on painkillers (Hydrocodone) and it's the only thing that has worked without side effects. Hope this helps! At least you know you're not alone

[hiattbj57 in reply to hm523]

I feel like a Guinea pig with all the different medicines .. I felt better before them I think !

Thanks for the reply !

BJane

[Madlegs1]

The opiods/opiates are the only ultimate answer to RLS if society would get over its horror of them.

At the low doses required, dependency and tolerance and even addiction are NOT issues.

Dr Buchfuerer has patients on low dose treatment for twenty years without issues. ( heart conditions might be a contraindication and would need monitoring )

OK - rant over. Back to normal service.😈😠😆😅

[Hidden in reply to Madlegs1]

Well said Madlegs.

[nightdancer in reply to Madlegs1]

Yes, well said, Madlegs1 ! Dr. B treats his RLS patients with compassion and his patient population is among the best treated RLS patients in the world. Fact. I have been on the same dose of opiates for 12 years now, never have upped the dose, signed a narcotics contract, and so on. We lower the doses once in a while to avoid tolerance. At low dose, the pain meds are safer to take than some of the other well knows RLS meds, for some people. I have tried iron infusions, taking the "gentle" iron every night, also every med listed for RLS, and also off label. I would be a stark raving lunatic if not for my very good doctor and the pain meds, which I need to function on a daily basis, for severe chronic pain issues, and also takes care of my RLS,.That is my experience. I almost met Dr. B once, but a funeral happened, so I never got to make the trip. Some day............ he is tons of help in emails!

[Madlegs1 in reply to nightdancer]

Thanks- could you elaborate on how you lower the dose every now and again- byhow much, what effect it has,for how long etc.

Thanks in advance.

[hiattbj57 in reply to Madlegs1]

I get real dizzy when I lower the antidepressant if I do it too fast .. Baby steps down on that for real ! Good luck ! Thank you ❤️

[Hidden]

I think the idea is that people come on here for advice. We can say what can help or not help. Then the poster can discuss with their doctor.

[Pippins2]

I agree when someone comes on here for advice that is all we give advice, not a prescription, .It is then up to the poster to decide for themselves whether or not to decide to discuss it with their doctor.

[hiattbj57]

I'm taking Zoloft and my Dr wanted me to up to 100 mgs .. After a few pills the RLS got worse so I cut back to 50 . I quit using Trivia a few months back too . I take a blood pressure pill and an anti inflammatory .. I wonder if she needs to change the Zoloft to something else ?

I appreciate the information !!

BJane

[nightdancer in reply to hiattbj57]

on the Zoloft, hiattbj57, that is an SSRI and is well known to make RLS worse.

[hiattbj57 in reply to nightdancer]

I went back to 50 mg on the Zoloft and it got some better .. That was terrible !! Won't do that anymore !

Thank you ❤️

[Hidden in reply to hiattbj57]

Hiattbj57, if you look at the treatment page of this website rlshelp.org it gives a list of the anti-depressants, most of them can make RLS worse. Two are listed as RLS friendly for most people. You can also email the doctor on that website for advice which can be helpful. You will get a reply back from him in 24-48hrs.

The website is what we use most for good info about RLS. Just ignore the dosage for the dopamines as the website hasnt updated to the new recommended doses to try to avoid augmentation.

Another website to look at is the UK one rls-uk.org

[Kaarina Administrator in reply to Hidden]

I was amazed to receive a reply from the doctor the same day and on a weekend too. Unbelievable.

[Hidden in reply to Kaarina]

Some of us are convinced Dr.B carries his laptop around with him 24/7 so he can reply back to people's emails even weekends.

[Kaarina Administrator in reply to Hidden]

I do not bother him often and always write to thank him and one time he actually replied "You are welcome." I was gobsmacked. He is the best.

[Madlegs1 in reply to Hidden]

He just doesn't switch off his mobile phone!

[hiattbj57 in reply to Hidden]

Thank you !❤️

[hiattbj57 in reply to Hidden]

I looked on the website you suggested .. Thanks ! I am learning so much I didn't know and just to know I'm not alone in this journey helps.. ❤️

[Hidden in reply to hiattbj57]

We try to guide people to the best websites that we know are safe and where you will get good info.

[nightdancer]

Seems to me people are just saying what their own experiences are. Telling someone not to listen to other members, and she was asked about what meds she is on now, etc, and no one is TELLING her to take pain meds, just that they work for some of us. I think a lot of us have been around the groups long enough to know what is supportive and what is not. A rant is not supportive, but if your intent is to impart what you feel YOUR knowledge is, then fine. But, there are almost 5,000 people here with RLS, so there are going to be LOTS of different experiences. For me, and I have said this many times before, yes, people should try the iron, but as with EVERYTHING, no one thing works for every single person. of it did, we would not need all these support groups. Hopefully a cure will be found, and I hope for our kids and the younger ones with RLS, there will be one for them. Lots of us have been researching our own RLS and the RLS community for decades, so we do have useful things to say.

[Suckerbeagle]

Responding to some of the replies...

I think it's okay to talk about what we've been through, what medications we've tried, etc. but I agree that this is no substitute for a good RLS doctor. And depending on where you live, those can be hard to find. Plenty of doctors out there will tell you they treat RLS, while they know less than we, the patients do. Having said that, often it's a painful trial-and-error search for the right medication, or combo of meds that work for any particular individual. Fortunately there are a number of meds that can work. The job is to discover what is effective for you—and you need a doctor you can work with. Opioids mentioned by one person do work very well for many. Unfortunately some docs, even so-called sleep specialists are nervous about prescribing them on a long term basis. I'm in the US where the DEA is busy classifying medications that have been used successfully for over 300 years as dangerous. No doubt opioids can be very risky for people who are looking to get high. On the other hand there are huge numbers of patients who take these meds safely. I think this site is UK based so people might not have the nervous doctor problem.

My best advice is to find that doctor who understands RLS and how the different meds work for you.

I have been fortunate to have found my neurologist who specializes in RLS early on. A few years ago I moved to different state and it took me almost a year to find the best doctor. I had to travel one hour, but it was worth it. Now I'm back in New England—in Southern Maine. There's a support group here, but out of about 50 people, no one has a doctor they would recommend to others. Now I travel 2 hours to Boston to see my original neurologist.

The symptoms of RLS CAN be controlled to a great extant. Finding the right doctor can be a daunting project. But without medical help you could find yourself in desperate straits a lot of the time. Life becomes intolerable. It need not be.

Some holistic practices may help. We don't have good studies on most of these. Acupuncture doesn't seem to stop the symptoms. Certain forms of medical marijuana are looking promising. Apparently you have to smoke it rather than using baked goods. We need more research on this.

Please don't give up. After a year without a specialist, I was ready to pack it in. I could hear that voice in my head saying, over and over, "this is not a life worth living."

Thanks to Dr. Baten in Santa Fé and Dr. Betsy Sherry in Boston, I've been able to live a good life even with severe, refractory RLS.

If you're in the UK, I'll mention some work that's being done there and in Sweden of an amazing process for severe RLS patients. A shunt is placed in the spine where small doses of morphine can be administered. They've been able to fine tune the dosage so that it treats the symptoms but leaves the patient alert and able to go about their lives. Most of us are not in bad enough shape to need this. But it's good to know there's somewhere to turn in a worst case scenario.

Sorry this post is so long winded. I hope I can convince you to keep trying. I would love to hear back from you about your progress.

Sincerely,

Jeanne

[hiattbj57 in reply to Suckerbeagle]

Thank you ❤️

[hiattbj57]

Great information here ! I'm so thankful ❤️

[hiattbj57]

I live in a one horse town and ride a bike everywhere . 1 Doctor 1 drugstore .. It's on a island , lol .. My choices are very limited . She does seem to care a lot though❤️❤️

[hiattbj57]

It is fascinating and has for sure made me wonder what is going on .. Computer makes mine worse not from sitting but from the EMFs ! I know it sounds crazy .. But I can actually feel the higher pulsation after a session on the laptop and also I feel like I have a sunburn . So Strange ..

Thank you ❤️❤️

[hiattbj57]

I had back surgery a year ago and it started then ..I take a Beta blocker called Atenolol and it helps with rapid heart beat too ..

I've started taking a multi vitamin and the RLS got a little better ..

I had bad reactions to the dopamine drugs ,.. All of them . Explosion sounds in my head and felt like rubber bands popping in my head too . So scary .

The anti inflammatory is diclofenac sodium 75mg . It's the only one that helped my back that I tried . I was taking a ridiculous amount of Advil and didn't get the relief that I get from 1 of those . I use to love to sleep on my stomach .. I can't seem to anymore after back surgery . Now I have to get on my side and pull my legs up tight .when I stretch my legs out the RLS gets angry !

Thank you for the great information ❤️❤️

[Madlegs1]

This thread has been one of the most informative and balanced of any I have come across for a long time. Congratulations to you all.

[hiattbj57 in reply to Madlegs1]

I have something interesting to add ., a friend told me to take Apple Cider Vinegar before bed for RLS . I made a cup of it mixed with honey and lemon and sipped on it thru the night . Second night I did the same .. I can actually tell some improvement !! It's listed on a RLS home cures site . It adds obsorption of your vitamins it says ❤️❤️I'm shocked !

[Whitebuffalo in reply to hiattbj57]

I'm shocked too and I wasn't even taking it for RLS so can't be placebo. Hope it's still working for you.

[Madlegs1]

That's great! I indulge in that concoction as well - I think it does me good too. Have you tried it with cinnamon and / or turmeric? Very good.😴

[hiattbj57 in reply to Madlegs1]

I will definetly add cinnamon tonight .. Great idea ! I am pleasantly surprised that something so simple could make a difference and no awful side affects ❤️Thank you !