My Story Up To Now

[FreeqntFlier]

Developed RLS in my 70s. Have taken low doses of Duluxomine for 20 years to help with anxiety and depression. Am extremely sensitive to medication. I am convinced that Duluxomine is the primary cause of my RLS, and have been tapering off slowly for two years. Hope to eventually switch to bupropion, the only antidepressant that does not cause RLS.

One thing, psychiatrist tried six different antidepressants on me in 2000 through 2002. One was Wellbutrin and it had terrible side effects. Problem was, in retrospect, that I was given too high dosages and switched abruptly from one drug to another. Duluxomine finally helped depression, and has worked on low dosage for all these years (helps with dopamine reuptake). When I've tried to go off, depression returns, so it seems i need some sort of low dose antidepressant. Hoping trying Wellbutrin (bupropion) will help, if my doctor approves.

I also suffer from IBS and Menieres Disease, but control both with diet, exercise, supplements, meditation. I'm searching for something to help with severe RLS. Gabapentin is now working, but RLS appears to be breaking through.

[ChrisColumbus]

Presumably you also tried trazodone during your trial of antidepressants? That's the only one other than bupropion that's regarded as RLS safe, and indeed can help.

Buspirone (Buspar) is also generally OK as an anxiety treatment and can help RLS.

[ChrisColumbus]

Hopefully you've looked into other causes of RLS either previously or since joining the forum? Your profile also mentions sertraline (Zoloft) and venlafaxine (Effexor): presumably these are drugs that you've tried in the past and given up, as they can both exacerbate RLS?

Have you read any of SueJohnson 's and others frequent Replies about iron levels and therapy, things that make RLS worse etc?

[FreeqntFlier in reply to ChrisColumbus]

Yes to all your questions. I have asked doc to check iron Levels. All the info available is overwhelming.Sue's list of possibilities is daunting.

[SueJohnson in reply to FreeqntFlier]

You may have seen this in my replies to others, but just in case you haven't. Be sure to ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[SueJohnson in reply to FreeqntFlier]

And in case you haven't seen this : Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

How much gabapentin are you taking? And are you taking it in divided doses 2 hours apart of no more than 600 mg each? According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

And if you haven't read it check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment atHttps://mayoclinicproceedings.org/a...

[SueJohnson]

You are absolutely right! Duluxotine can definitely make RLS worse. Mine was under control with gabapentin when my doctor prescribed it for muscle pain I was having. My RLS broke through and was worse than before I started gabapentin. I was miserable. If you had problems with Wellbutrin I would suggest trazodone as Chris Columbus mentioned it is safe for RLS.

[FreeqntFlier in reply to SueJohnson]

Thank you so much!

[ChrisColumbus in reply to SueJohnson]

I'd assumed that we were talking about duloxetine (Cymbalta) here? I can't find any reference to a duluxomine?

(BTW, there's just been a bit of a media storm here about a study stating that there's little evidence that antidepressants prescribed in the UK for chronic pain actually help.

"Only duloxetine – a drug with many industry sponsored trials – had enough evidence for the researchers to have even moderate confidence in their findings, with the drug found to have a small to moderate effect on substantial pain relief.")

[SueJohnson in reply to ChrisColumbus]

Yes duloxetine. I copied and pasted his spelling and forget to change it.

[FreeqntFlier]

Can't spell when so doped up. Sorry.Yes, Duloxetine (Cymbalta) does help with osteoarthritis. Evidently my spell - check quit when I erased history and cookies on my cell phone.

[SueJohnson]

And if you take magnesium, don't take it within 3 hours of gabapentin.

[Eryl]

Look on youtube for Dr Chris Palmer talking about his book 'Brain Energy'. He may have the answer to all your problems (depression, anxiety, RLS, arthritis and many others which you may not have noticed yet)

[DicCarlson in reply to Eryl]

Fascinating! youtube.com/watch?v=_XTOKo9...(Not working as expected?)

[Eryl in reply to DicCarlson]

Yes, and he's not the only one saying similar things. Check out Georgia Ede 'Our Descent ino Madness'.

[PoorRichard]

I, too, used an SSRI (Citalopram) for many years and developed RLS later in life. Ironically I was treated for gut issues with Cymbalta after I had come off Citalopram. The Cymbalta sent my RLS through the roof, which led to RLS diagnosis and my discovery of this forum (a silver lining). I found that iron bisglycinate supplementation helped, as well as diet (reduced: carbs, sugar, alcohol, caffeine). All was good for a while. Lately it's flaring up. I took one of my old Gabapentin and, so far, things have settled. Knock on wood. Chris Palmer video is inspiring. The most helpful book I read (also recommended by @eryl) was "A Statin-Free Life" by Dr. Malhotra.

[SueJohnson in reply to PoorRichard]

If the gabapentin helps and I remember you didn't like the side effects, you might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. If you take calcium don't take it within 2 hours.

[PoorRichard in reply to SueJohnson]

Thanks, Sue. I made it another few nights with no supplemental GP. Should the need arise I will look into pregabalin.

[FreeqntFlier]

Tried Keto Diet for three months, then progressed to Carnivore Diet for three months. Results, RLS worsened and I can hardly stand eating meat anymore. :-(Both Diets very hard for me to stick with.

Try this site:

drlamcoaching.com/blog/keto...

[FreeqntFlier]

Has anyone experienced non-stop body jerks due to long-term use of Gabapentin? My doctor seems to think this is a danger, so he doesn't want to prescribe more than 900 mg Gabapentin. He has one patient who now jerks non- stop, with or without the medication. Anyone know anything about this?

[SueJohnson in reply to FreeqntFlier]

It can happen but it is very uncommon. And if it does, one can reduce back to the dose where it doesn't happen, so that should not be a reason to not prescribe more than 900 mg if it is needed.

[FreeqntFlier in reply to SueJohnson]

Thank you!