cheyenne

[TEDDYBOY22HX]

I get fed up with this rls keeping me up at night, maybe 3 times a night. Gabapentin andAmitripalin don't seem to help

[Jelbea]

Hi Teddyboy - Welcome to the site. Someone much more experienced here than I will no doubt answer you. But what I can say that one tablet of Amitriptyline caused me more than 24 hours non-stop restless legs. This is how it affects very many people although doctors are still prescribing it. I cannot advise regarding gabapentin but Sue Johnston or some of the others here will no doubt help. Good Wishes

[TEDDYBOY22HX in reply to Jelbea]

Thanks for that.....I have cut out Amitriptylin, lets see how I go

[Madlegs1]

For the vast majority of people, Amitriptyline is aajor trigger for RLS.It is quite a strong ,nasty drug.

Could you try stopping it and see how things go?

It may take a few weeks to wash through your body, so hold tight.

Also check on any other possible triggers such as food and drinks.

Good luck.

[TEDDYBOY22HX in reply to Madlegs1]

I will stop it and see how I get on....thanks.

[SueJohnson]

As others have said amitriptyline makes RLS worse for most people. A safe substitute is trazodone or wellbutrin. How much gabapentin are you taking? And how long have you been taking it?

[TEDDYBOY22HX in reply to SueJohnson]

I TAKE GABAPENTIN 3 TIMES IN THE EVENING, 6 TABLETS AT 300MG EACH, QUITE A LONG TIME NOW,

[SueJohnson in reply to TEDDYBOY22HX]

So a total of 1800 mg ?

[SueJohnson in reply to TEDDYBOY22HX]

Or a total of 300 mg?

[TEDDYBOY22HX in reply to SueJohnson]

1800mg

[SueJohnson in reply to TEDDYBOY22HX]

OK - that is not a low dose then. I assume you are taking 600 mg 1 to 2 hours before bed, 600 mg 4 hours before bed and 600 mg 6 hours before bed. If stopping the amitriptyline doesn't work and wait until it is out of your system, then you could still increase your gabapentin. But at that point I would switch to pregabalin as your don't need to divide the doses. 1800 gabapentin is equal to 300 mg pregabalin. Add 25 mg every couple of days to find the dose that controls your symptoms. The maximum is 600 mg.

[SueJohnson]

Have you had your ferritin checked? If so what is it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't had it checked, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 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 advice.

[SueJohnson]

Meanwhile 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

[Jenny786 in reply to SueJohnson]

Hi, noticed taking HRT making restless legs worse? Anyone else feel this too

[SueJohnson in reply to Jenny786]

It's the estrogen. But did you mean to reply to me.

[Jenny786 in reply to SueJohnson]

Oops 😬. I meant for anyone. Question is do I stop hrt if legs don't settle.

[SueJohnson in reply to Jenny786]

I would

[Jenny786 in reply to SueJohnson]

Thanks

[Hidden in reply to Jenny786]

Yes, many people, including myself.

[Jelbea]

Hello again - Were you given amitriptyline to treat your restless legs or were you given it for anxiety or depression? If it was to treat RLS then it is obviously no good for you.

If, however, it was prescribed for depression then Sue has suggested Trazodone or Wellbutrin as alternatives.

I am in UK and have asked for either of these but was told they are not used here.

Good Wishes

[ChrisColumbus in reply to Jelbea]

Trazodone: brand name: Molipaxin. nhs.uk/medicines/trazodone/

[ChrisColumbus in reply to Jelbea]

Wellbutrin is a brand name for bupropion, branded Zyban in UK. Following from an internet blog about getting it in the UK : "Sometimes prescribed for treatment resistant depression but you probably need it recommended by the local mental health team for a GP to prescribe it.If you just asked a GP, the likely response would be a "No", and "Bupropion is prescribed for smoking cessation". The basic issue here is that Bupropion never got licenced as an antidepressant in the UK. It can be prescribed off label for that purpose in theory, but there are rules about off label prescribing which doctors have to follow, and they take on additional responsibility I think."

[Jelbea in reply to ChrisColumbus]

Thank you ChrisC. I discussed it with two different GPs in two different practices and using different names for the drugs but just met with no. I was unable to get any other antidepressant because of other medications I was taking but the answer was "no". However, I survived without any medical or medicinal aid - albeit very difficult.

[ChrisColumbus in reply to Jelbea]

In the case of Trazodone, there is guidance in the NHS link I shared earlier on who it cannot be prescribed for. Bupropion is definitely more problematic...

Glad that you somehow managed, but a great shame that you were unable to get more help from your GPs 😕

[TEDDYBOY22HX in reply to Jelbea]

perscribed for RLS

[ELLSBELLS in reply to Jelbea]

I was prescribed trazodone for many years in uk. Had to stop because of interaction with dihydrocodeine.

[TEDDYBOY22HX in reply to Jelbea]

YES, I was given amitriptylin for my rls, AFTER ALL THE ADVICE I AM STOPPING TAKING IT AND SEE HOW I GET ON CHEERS

[Joolsg]

As others have advised Amitriptyline worsens RLS for most RLS patients.It made mine 1000% worse.

What dose of gabapentin are you taking and when?

There may be other medications you are taking that worsen RLS. If you list all your meds, including and cough and cold meds, we may be able to help.

[TEDDYBOY22HX in reply to Joolsg]

I take 300mg of gabapentine 3 times an evening 5 tablets in all!!!!

[Joolsg in reply to TEDDYBOY22HX]

That's an incredibly low dose for RLS.Average dose is between 1800 -2400mg. See Mayo algorithm.

I suggest you stop/ replace Amitriptyline and see GP to discuss increase in gabapentin. It's not well absorbed above 600mg so split the dose and take 2 hours apart. If you take magnesium make sure you take it 2 hours before gabapentin as magnesium affects absorption.

Increasing to 1200 or 1500mg might improve your RLS. If not, you still have room to increase.

If increasing the dose doesn't help, you may need low dose opioids.

[TEDDYBOY22HX in reply to Joolsg]

THANKS FOR THTA, I WILL INCREASE TO 1800+

[Joolsg in reply to TEDDYBOY22HX]

Increase slowly as directedby Sue and tell your GP. Refer GP to the Mayo Algorithm so they can see the average effective dose and the upper limit.

[SueJohnson in reply to TEDDYBOY22HX]

As Joolsg mentioned that is a low dose. Ask for 100 mg tablets and increase every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as Joolsg mentioned it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 not 2 hours before gabapentin as it interferes with the absorption of gabapentin. The Mayo Clinic link Joolsg mentioned is at Https://mayoclinicproceedings.org/a...

[Shumbah]

When I hear doctors are still prescribing Amitriptyline I want climb onto the roof and scream NO!!!

Amitriptyline is doctors last resort go to for many medical complaints they should call it

I DONT KNOW KNOW HOW I CAN HELP YOU 😡

I am so sorry they have prescribed this for you ,

Easiest way off it will likely be opioids

You have been given some great advice I will add one thing people often miss Fake sugar even natural monk fruit can cause more issues than sugar depending on quantity .

My heart goes out to you

[Joolsg in reply to Shumbah]

Yep! My MS neurologist calls it 'neurologists' DIRTY SECRET'.

[Hidden]

It's wonderful that you found this place to talk to others. It's a wonderful resource and can be comforting.

[Greenleaf360]

Antideppresants aggravate RLS. Amitriptyline is causing ur RLS to be worse. RLS.ORG has a paper on meds that i lifted this info from.

[SueJohnson in reply to Greenleaf360]

Yes most do, but there are two that don't. Trazodone and Wellbutrin.

[Hidden]

Good evening, TEDDYBOY22HX. Sorry to hear of your suffering. I have nothing substantive to add to what has been said in the replies of others. But maybe I can offer a chuckle?

This past year, when I was suffering 24 hours a day, seven days a week, during my abrupt discontinuance of pramipexole, my sleep/wake cycle was totally disrupted. I was wide awake and unable to sleep. What to do?

I turned on my TV and noted that one channel was playing the "Westerns" that I so enjoyed more than fifty years ago. There was Gunsmoke, Rawhide, Wagon Train, and insofar as may be relevant to your comment, "Cheyenne"! Watching these programs brought me back to days (and decades) gone bye in which I was "normal" and didn't suffer from RLS. I looked forward to the next installments of each series, and enjoyed at least some measure of temporary relief while watching same. If they only could put "Cheyenne" in a tablet!

Be well.

[Hidden in reply to Hidden]

You forgot Bonanza 😳

[Hidden]

Hi, SalemLake, and that you for putting a smile on my face. Actually, I didn't forget Bonanza. Fact is, I used to watch it regularly (Sunday Night on NBC if I recall). But when I tried to get in-to it recently, I just coulnd't. It appeared to me to be a bit too "goody-two-shoes" this time around. I do have to make one confession:

When I grew up, we only had one black and white TV. Except when my parents were engaged in other matters, my programming choice was limited to what they preferred. Though I managed to have watched perhaps every episode of many of the 1950's classics (Jim Bowie, Wyatt Earp, Bonanza, Rawhide, Wanted Dead or Alive, Have Gun--Will Travel, Sugarfoot, Tales of Wells Fargo and many others among them), there were some which, for whatever reason, were not favored--as likely as not owing to some secret hostility that my mother felt toward some person, place or thing connected with the program.

Thus, while I now consider Gunsmoke (Season 1, Episode 1 through Season 9, Episode 28) to have been the all-time classic Western, we rarely watched same when it first was on TV.

Be well.

[Hidden in reply to Hidden]

I was more of a Kung Fu girl anyways. “A wise man walks with his head bowed.” Ya know, at some point you should probably explain how you started on the DAs in the first place. And you should tell us what other medications and supplements you’re taking. I’m gonna guess you started the DA in your 50s - the time it’s seems when men ( and women) start to need medications for other health conditions. The worst, in my opinion, being SSRIs.

Anyways, when I was about 39 I decided it would be a good idea to take Melatonin. Up until that point my RLS was mild and infrequent and I doubt I even knew I had “RLS.” I didn’t make the connection between the melatonin and my sudden night-time restlessness. I read on the internet to just take some iron at night. I bought a gentle iron (ferrous bisglycinate) for my sensitive stomach and it worked that first night and every night until I ran out and tried ferrous sulfate which didn’t seem to touch the RLS. Nor did my 25mg of ferrous bisglycinate work when I upped the melatonin. I went back on the internet and discovered that melatonin aggravates the symptoms of RLS. The day I stopped the melatonin is the day my RLS went quiet and I stopped the iron as well. Time is not a friend to those of us predisposed to RLS. I am back on the iron and have been for several years. Sometimes I need to take more, but it never fails me. Like you, I have researched RLS quite in depth, and several other conditions over the years, but RLS is by far the most bizarre.

Jeesh, how and why did the RLS genes survive. I’m gonna guess that a younger reproductive age and death before 40 meant that the more severe symptoms hardly occurred and didn’t stop people who had them from reproducing. Lucky us 😕

[Hidden in reply to Hidden]

Good morning, SalemLake and thanks for sharing. It's about 4:00 AM as I start typing this reply to your message. Was debating whether or not to treat myself to another 1 x 25 mg tramadol but decided to tough it out. For all the good it may do, am now about to have a cup of chamomile tea (with Splenda). In no particular order:

When I wrote my Introduction and Preface a few days ago, I mentioned some of the medicines that I had taken. [From your remark, I infer that you may be "sensitive" like I am and have some "sixth-sense" attributes. Perhaps we should poll others on that to see if common to RLS. But that's for another discussion.] Back on track:

Before going the Rx route, I tried various over-the-counter medicines, which included some now regarded either as wholly ineffective, counter-productive, or even dangerous. These included St. John's wort, melatonin, chamomile tea, valerian root, and my former favorite: Legatrin. Legatrin (the former formula with quinine since was banned by the FDA) actually worked well for me. Then came the Rx's:

I did not start with dopamine agonists. If memory serves, I began my trevails with Neurontin when it still was only available as a patent medicine. Some years later, I began my decent into other medications (too tired to look up spelling, so please excuse typos) that included: Baclofen, Bromocriptin, hydrocodone, codeine, Sinemet, Klonopin, Mirapex (patent), Requip (Patent), Neupro, pregabalin, Horizant, etc.). Some "sleep experts" prescribed medicines which I refused to take (e.g., Tegretol, a known teratogen).

At what age did my symptoms commence? First noticed in my late teens. Strange tingling at night. Worsened over the years. But I, as my father before me, functioned 100% notwithstanding lack of sleep. We both were "morning" people ...arising early in the day and able to put in a good day's work. Thank goodness I now am retired. Between DAWS and current tramadol detox, I doubt that I ever could get to work before mid or late morning.

Before I forget: I was not into "Kung Fu" and such when it first became popular in the US (circa early 1970's). Nor even when David Carradine starred in the TV show. Yet several years ago, I became "addicted" (nay, "dependent") upon the old Kung Fu movies made in Hong Kong in the 1970's - 1980's. The originals all were in Chinese, and I preferred "dubbed" to "subbed." Funny how I became a fan of some English voices and, in time, associated them with the actors who spoke in Chinese.

Be well.