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Restless Legs Syndrome

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gabapentine queries

Sinead12 profile image
65 Replies

this may sound silly but hopefully understood. I have struggled alone with rls now for around a year and a half , gritting my teeth and trying ways to ease it. I don’t struggle all the time , it comes in episodes , some stronger than others. But I recently had enough and thought it was time to see the doctor ( I don’t go to the the doctors as iv had bad experiences and only go once I really can’t cope) . I had done as much research as possible before hand and had expectations of what would happen. ( blood tests to check iron ferritin etc) and I understand that medicine these days tends to be more treating the issue than resolving it and that they are under strict time frames but I’m feeling very uneasy about the fact that he prescribed me Gabapentine. 1st , as a previous drug user , who is still in recovery I can only take a small dose due to respiratory threat . So he started me at 300mg but from the research iv seen the dose to help will probably need to be higher. But also when looking into the medication it’s not even something I can take when having an episode. It would need to be taken on a regular basis and maybe I’m over reacting but the thought of taking more drugs that I may need to be on for years and may struggle to get off , is frightening. I’d love to get some really helpful advise on anything else I can do myself before I give up and just take the Gabapentine. Iv considered maybe just getting iron supplements to see if they help but I wouldn’t even know what dose to take.does anyone have any experience coming off Gabapentine? Should I be worried about even starting down this path of Gabapentine or am I overreacting

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ChrisColumbus profile image
ChrisColumbus

So, what were the actual numbers from the blood test - and was it done in the morning after fasting overnight? (It sounds as though you weren't taking iron supplements before the test...)

Sinead12 profile image
Sinead12 in reply to ChrisColumbus

I was never given a blood test to check my iron, from all the research iv done I thought I would be asked to take one but my doctors appointment was very matter of fact, I was asked minimal questions , like “ how do you know it’s rls ? And “ how bad is it “ and then I was told I’d be given a prescription for Gabapentine… I’m not very assertive otherwise maybe I should of asked for a blood test out right but I wasn’t offered one ????

ChrisColumbus profile image
ChrisColumbus in reply to Sinead12

A full iron panel in the morning after fasting overnight should have been the initial step, as iron supplementation can resolve the problem for many without resort to drugs (but at least your doctor was knowledgeable enough to suggest gabapentin rather than a dopamine agonist, which is still many UK doctors first response). Frankly, I would ask for the blood test before starting taking ANY drugs for RLS...

ChrisColumbus profile image
ChrisColumbus in reply to Sinead12

Beyond this, are you on other medications (prescribed or over the counter) as many can trigger RLS.

Sinead12 profile image
Sinead12 in reply to ChrisColumbus

only methadone , and a very small dose of 14ml as my recovery treatment comes to an end but theoretically this should be helping my rls (fat lot of good it’s doing lol)

ChrisColumbus profile image
ChrisColumbus in reply to Sinead12

Show your doctor the following, which Is taken from the Mayo Clinic's 'Management of RLS' written by acknowledged RLS experts:

"Iron Therapy

There is substantial clinical research demonstrating that patients with RLS have lower than normal iron stores in some regions of the brain and that iron therapy can be beneficial, even if the patient is not anemic or does not have a systemic iron deficiency.

However, because there is currently no accepted method to assess a patient’s brain iron stores, clinicians should evaluate iron status in all patients with RLS, even in the absence of typical factors associated with iron deficiency, such as menorrhagia, gastrointestinal blood loss, or frequent blood donations. A full iron assessment should include serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation and should be measured in the early morning after an overnight fast.

On the basis of a consensus of RLS experts, it is recommended that all RLS patients with serum ferritin concentration of 75 μg/L (to convert to pmol/L, multiply by 2.247) or less and transferrin saturation below 45% should receive a trial of oral iron therapy. Serum measures of systemic iron status, however, do not consistently predict those who will respond to iron treatment. If serum ferritin concentration is below the lower limit of normal based on the patient’s sex and age, a cause for iron deficiency should also be pursued. Of note, serum ferritin is an acute phase reactive protein and may take up to 6 weeks after recovery from an inflammatory or infective event before returning to normal. In the presence of acute or chronic inflammation or malignant disease, serum ferritin concentration can be misleadingly high. In those situations, transferrin saturation below 20% may be a more accurate measure of systemic iron deficiency."

ChrisColumbus profile image
ChrisColumbus in reply to ChrisColumbus

For RLS sufferers, serum ferritin needs to be brought to over 100, preferably nearer 200, and transferrin saturation to be between 16-50% (men)/16-45% (women)

Sinead12 profile image
Sinead12 in reply to ChrisColumbus

this is a little bit conspiracy like but I have a theory. 2 fold. One , that my dopamine levels could be struggling due to my long term opiate issues but 2 ndly I wonder how iron stores work . It’s probably me just looking for correlation but I wonder if it’s possible that I depleted my iron stores when I tried the keto diet , I don’t know how iron stores work but could it be a possibility that I was low iron and then keto tipped me over the edge or does it not work like that ?

ChrisColumbus profile image
ChrisColumbus in reply to Sinead12

Interesting thoughts, but until you've had the blood test and got the actual numbers we're speculating.

Report back on these numbers so that expert members on here such as Joolsg and SueJohnson can give further advice. If you look through their Posts and Replies on here you'll find much more useful info on causes and treatments.

Sinead12 profile image
Sinead12 in reply to ChrisColumbus

not sure if your in the uk , but how would I go about this . Find the email for my doctors, forward the info ( mayo clinic doc) and ask if the doctor would set me up to have a blood test specifically looking for the iron info like in the document ( ferritin etc) ??

Joolsg profile image
Joolsg in reply to Sinead12

I've replied to you above Sinead. The NICE cks guidance and the NHS websites both state that blood tests should be taken. You absolutely should not have to pay.

RLS is very common after withdrawal from opiates.

The methadone ( at the right dose) will work very well to cover your RLS, but as you reduce it, the RLS will flare up.

As you have said you would prefer not to be on meds for the rest of your life, you could try to be med free but it will be really difficult to deal with nightly RLS for 2 or 3 months until your brain dopamine receptors settle.

Bare in mind that most people with RLS will have to be on meds for all their life. It controls the RLS.

NJB71 profile image
NJB71 in reply to Sinead12

Hi Sinead, it sounds as though you are very recently comIng off drugs and are still on methadone to assist this.

Most treatment centres for addiction would have both Pregabalin and gabapentin on their list of medications to avoid along with anything codeine based.

The notes which come in the Pregabalin definitely say caution should be taken when patients have been addicted to any substances in the past. This being the case I would be wary of going down that route even though it definitely helps with RLS.

I would go down the iron checking levels first and foremost. Iron treatment definitely works well also.

The fact your Dr gave you gabapentin as a first option only shows how little the medical profession knows about addiction.

RLS is horrendous but so is addiction and withdrawal.

I wish you well.

Fingerandus profile image
Fingerandus

hi Sinead. i just want to tell you that i took pregabalin [ lyrica for many years because i had painful peripheral neuropathy my big toe was really painful my podiatrist told my doc perhaps i could take lyrica, in the end i had to stop driving because i couldnt feel my right foot [ brakes ]it has taken me months to kick the habit, lyrica are very addictive and i am fighting anxiety and panic attacks i dont use them anymore. the feeling is coming back in my feet the swelling is going down. i still have to kick pramipexole [sifrol ] im down to half a pill a night,my RLS are not so bad i got thru last night with only a small episode i did sit up watching old movies until 4 30 am cant sleep much but i will win its a bit late in my life to try to turn around im 80 yrs old but i wouldnt take pregabalin again.i also had breathing problems radiation damaged lung, puffers of all kinds. i dont use them any more either i have 4 pillows and sleep sat up if i sleep

Sinead12 profile image
Sinead12 in reply to Fingerandus

this is what I worry about , iv read that people struggle to come off Gabapentine style medications and I have enough to worry about with coming off methadone without adding fuel to the fire and that’s me worried at a starting dose . If I take it and it doesn’t work the doctor is likely to want to increase my dose . I’m not sure what to do , iv thought about just supplementing with iron in high dose , iv thought about trying a carnivore diet and now there’s this . Very 🫤 confused

Sinead12 profile image
Sinead12

obviously when I’m actively going through it I just want it to stop and would take the Gabapentine but now I know it doesn’t really work that way ( instant relief) I’d rather cross off any underlying causes before I start on a medication I could be on forever ( I don’t like the sound of that if I have any choice) is there anywhere I could go and pay to get a blood panel done?

Fingerandus profile image
Fingerandus

Ps Sinead i take 1 magnesium pill in morning and 1 iron pill at night it tells you on the bottle how much to take read Sues post on how to take your iron xxx

Carlettejaque profile image
Carlettejaque in reply to Fingerandus

If you are taking Gabapentin, as I am, you can't take magnesium. Magnesium even in small doses stops the efficiency of the gabapentin.

Fingerandus profile image
Fingerandus in reply to Carlettejaque

i was on pregabalin it took me quite a few months lowering the dose down to one 75mg pill at night i no longer take lyrica. i am trying to now stop pramipexole ..sifrol i have tried lots of times even after twenty six nights without a pill i couldnt do it, so now i have cut my pill in 3/4 for two weeks and now half so far, thats not going well out of 6 nites on half only had two 4 hr sleeps, nothing at all last nite i could not stop my legs no matter what i did pills, oils, walking, computer. it started around 6 pm i cant concentrate enough to read ,i did watch a couple of dvds but tv annoys me. ads and news.last nite my arms were so restless too will they ever stop..??. i only started magnesium when i stopped pregabalin.

SueJohnson profile image
SueJohnson in reply to Carlettejaque

You can take magnesium, but you need to not take it within 3 hours of gabapentin.

rmbroadh profile image
rmbroadh in reply to SueJohnson

Sue, can you take iron around the same time as gabapentin?Have been taking iron at night before sleep and have just started gabapentin 100mg at bed time.

I take 100mg of mag (a gummie) in the late afternoon.

SueJohnson profile image
SueJohnson in reply to rmbroadh

yes that is fine.

ChrisColumbus profile image
ChrisColumbus

I'd also add that iron may not be the issue: my own RLS was despite having healthy iron stores (serum ferritin over 200).

For me, after discounting iron, taking magnesium citrate, cutting back on sugar and caffeine, and cutting out artificial sweeteners, stopped my RLS.

But I'd recommend the iron panel first, so at least you can then confirm or eliminate that as a possible reason for your RLS.

Sinead12 profile image
Sinead12

that’s all I want , I’m just that kind of person . I’d rather try to find the cause and fix that than fix the symptoms but I’m also getting desperate 😞

SueJohnson profile image
SueJohnson

Lyrica (pregabalin) and gabapentin are very very rarely addictive. I wouldn't worry about that. As far as coming off it if you do so very slowly you will have no withdrawal effects. They can have side effects but usually they are mild and go away after a few weeks and the few that remain are usually worth it to get rid of the RLS. For some they are not tolerable and they do have to come off it but as mentioned it can be done without any withdrawal effects. On the iron, ask for a full iron panel, and as Chris Columbus said, fast after midnight and have your test in the morning. Also stop taking any iron even in a multivitamin 48 hours before the test.

Carlettejaque profile image
Carlettejaque in reply to SueJohnson

I'm on Gabapentin and have been for 4 years. I'm on 2,400mg daily. It is addictive in as much as you get awful withdrawal if you stop taking it. I've tried reducing but can't do it.

Sinead12 profile image
Sinead12 in reply to Carlettejaque

I don’t know whether this will help but anything can be done if you truely want it … it’s just very hard . When I was an addict it wasn’t even to help with a condition, which makes it harder for you. You need a separate crutch to help when things are bad and the understanding that it’s a desperately slow progress. I’m a year and a half into methadone recovery and still have ATLEAST another year and a half left . So you could see why if I have to take Gabapentine it will be a disappointment to me .but after looking at all the great advice I think I’m starting to come to terms with “ I can’t have everything I want “ someone mentioned moving my methadone to the evening and even tho I’m going to try the gentle iron first that is definitely my next go to before I try anything else and I honestly think it may work for now , at least until my methadone is so low that it stops helping . X

Whymelord profile image
Whymelord in reply to Sinead12

Hi Sinead,just want to say you've come to the right place for help and advice and to wish you good luck 👍

SueJohnson profile image
SueJohnson in reply to Carlettejaque

If you reduce very very slowly you will have NO withdrawal effects. Try reducing at a much smaller amount and wait at least 2 weeks before reducing further.

Amrob profile image
Amrob in reply to SueJohnson

This is not the case Sue.

Amrob profile image
Amrob in reply to SueJohnson

Sue, it's just not the case that you won't experience withdrawal symptoms from pregabalin, even doing it at a very slow speed. I can't comment if it's the same for gabapentin. Granted, the effects will be less severe on a slow taper down.

In addition to my own experience, Lyrica (pregabalin ) support pages are filled with people who experience withdrawal symptoms despite withdrawing over months/years.

And although pregabalin is not highly addictive, there are still people who experience addiction to it, and plenty who abuse it.

Pregabalin and gabapentin is also used by people who use heroin to heighten the effects of heroin.

I think one needs to be particularly careful when giving advice to someone in recovery.

Kaarina profile image
KaarinaAdministrator in reply to SueJohnson

Please be mindful when giving information to people in recovery. Your response could be potentially harmful advice. The original poster, Sinead12, is in recovery, which warrants special consideration of her situation.

SueJohnson profile image
SueJohnson in reply to Kaarina

OK - point taken.

SueJohnson profile image
SueJohnson

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Sinead12 profile image
Sinead12

I’m not sure this is good enough but I remembered that when I first started having the issues , shortly after I had a full let of bloods done , iv attatched the results I had that were about iron to see if any warning signs are in these. I also noticed on one of them that my cholesterol and triglycerides are out of the normal range. Either way I will forward on the mayo clinic info and try to get a new blood test with all iron applicable and post it here for help

Iron bloods march 22
SueJohnson profile image
SueJohnson in reply to Sinead12

These iron tests don't give you what you need to know for RLS. Ask for a full panel iron test as mentioned above.

Hi Sinead, there are also non-drug substances that can worsen the symptoms of RLS, such as melatonin, Benedryl, certain types of birth control and hormone replacement therapy. Are you taking any of these? Also, having certain conditions/injuries can provoke symptoms, such as spinal injuries and chronic kidney disease.

Jools is right, you probably temporarily down-regulated your dopamine receptors and my guess is that you might have been pre-disposed to RLS in the first place. And you’re right, you would think the methadone would cover you in terms of symptoms. The methadone might be more effective if you take it at night, if you’re not already, or if you split the dose

I’ll tell you what I and several others on here do. We take ferrous bisglycinate (a highly bioavailable form of iron) one hour before bed on an empty stomach. If it’s gonna work for you, as it does for us, it should get rid of the symptoms of RLS in one hour for one night.

Here are some examples:

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

Sinead12 profile image
Sinead12 in reply to

I’m going to look it up online now, I didn’t sleep well last night and was up at 4.30 hence the early start to this thread and can tell it’s going to be the same today as I can feel it still there . What kind of dose would I look for?

in reply to Sinead12

I recommend this brand which are 25mg capsules: iherb.com/pr/solgar-gentle-... I used to take one capsule but since I had Covid I take two. You might want to start with two. It should work that first night. If it doesn’t then you should decide if you want to continue in case raising your ferritin might help.

Are you taking any of the substances I previously mentioned? Are you taking the methadone at night?

Sinead12 profile image
Sinead12 in reply to

I don’t take anything else except my methadone . I take it in the morning. I’m sure if I took it at night it would probably help but it then leaves me groggy when I wake up plus it becomes a sleeping aid which means somewhere down the road I’ll have sleep issues. I’m going to order the gentle iron and see if that helps first

in reply to Sinead12

Any joy, Sinead?

Sinead12 profile image
Sinead12 in reply to

I went out and got the gentle iron and took 2 before bed for 4 nights running, I also increased iron foods but they had no effect. So I decided to change my methadone to evenings and the difference in my sleep is incredible , haven’t noticed any rls since . But I am having issues coping on my methadone dosage and believe the rls is being brought on by my reduction. I’m going to talk to my drug worker about changing over to bupronorphine and see if this helps my overall health issues, let’s just hope it doesn’t bring bk on the rls

in reply to Sinead12

Very glad you found some relief!

TeddiJ profile image
TeddiJ in reply to

Hi, SL! You were right about my hormones; just wanted to let you know. I really thought it was the suboxone, as the sweats on opioids are very similar to the sweats from unbalanced hormones (for women). I did a saliva test and then started on the old creams I had lying around-even though they are expired, I am doing much better and will get on the correct regimen after seeing my hormone doctor. This is important for all of us middle aged women to know because Dr. B was going to switch my prescription. Plus, the opioids are known to mess with hormones, although I don't have the hard facts. Just FYI and thank you!

in reply to TeddiJ

Ok, so sweats are better on HRT, but a more important question (drum roll please) is your RLS still behaving itself??? Last time we chatted it sounded like the RLS was in the rear view mirror…strange involuntary stomach contraction aside.

TeddiJ profile image
TeddiJ in reply to

Yes, after all the struggle, life has been so much better just recently, if I keep the Suboxone dose low and get my hormones straight. I am now taking a bit less than before-just 1/8 of a 2 mg square of film right before bed. I mostly feel like I no longer have rls. Kratom works but wasn't like that-I was very aware of rls all the time-throughout the night as I needed more. I also didn't dare leave the house during the day or evening without backup kratom capsules.

I didn't want to go back on an opioid for the side effects and also just the huge issue of getting it and then getting refills and also how I have been treated/viewed. Suboxone seems to be less difficult to get than the other opioids, so (I think) I might be ok getting it locally. Of course the one doc who said he didn't care and would give it to me long term retired. His replacement was going to make me test all the time and go to rehab and just the usual awful opioid bs. She seems to have softened a bit though. Plus, I need so little of the prescription that it lasts for a very long time.

I do still have those weird contractions and I hope it isn't going to be some awful thing down the road.

I plan to re-start the berberine; as you said-why not and maybe it could change something down the road. Maybe it already has?! Thank you-how are you doing? So great that all you need is iron!

in reply to TeddiJ

1/8 of a 2mg sublingual sheet? That sounds VERY low, but great!!! I’m surprised no one on here has commented or asked questions like “what dose did you start with.” Well, that’s my question, as well as - did you keep lowering the dose until you found the smallest effective one? You’re doing so well I’m not sure you should restart the berberine. Jools mentioned the other day that she has been taking berberine, but I believe for another reason. I wonder if she has experienced any deleterious side effects from it. I assume if she had she would have stopped.

TeddiJ profile image
TeddiJ in reply to

Hi, yes, it does seem very low! My prescription was to take 1/2 of the film, so I had been using around 1/4 to 1/2-it varied. Suboxone has a long half-life so sometimes I didn't need it the next night. Gradually, and very recently, I discovered that 1/8 controls the rls-mainly because the intense heat/pouring sweat made me cut back. I then realized the misery couldn't totally be from the suboxone. The saliva test confirmed that I am very low on various hormones. (I also asked the doctor about berberine and she said that it is a very good supplement overall and no worries about taking it.)

Overall, it also means I am dealing with less intense opioid side effects all around. The bad news is that I missed 4 refills of SIXTY films each. If I had gotten them, I would have quite the stash and would feel so much less anxious about access long term.

Thanks for asking!

Camry2020 profile image
Camry2020

Sinead, I’ve been tortured by RLS for about thirty years and have been down every path ever imagined…been through the augmentation we read about and have found way more causes that exacerbate this hellish condition. I’ve finally accepted that this is who I am and to some degree structure my life around it. Having said that I still try for the magic bullet. Right now I take 3600 mg (built up gradually) of Gralise, a form of Gabapentin at 5 pm. It helps somewhat. What’s I’m going to now is counter-intuitive but it works miracles for me……caffeine has saved my life. I first read this suggestion here three years ago and it sounded nuts but I got t so desperate I tried it. I drink expresso at three in the morning on hellos nights and I can actually feel an extremely slight sensation as it it absorbed in a very few minutes. It’s extremely important to become exquisitely sensitive to your body……know what causes every feeling. Sounds crazy but when you’re tortured enough you try everything! Good luck! PS. Have a granddaughter Mairead!

Sinead12 profile image
Sinead12 in reply to Camry2020

I’m definitely getting better at reading the signs of if it’s coming on, but the triggers are less known . As I’m sure many of you know …. I finally think iv figured it out , it’s this thing , then it all falls down and turns out it wasn’t that thing … like right now I feel maybe the all bran iv been eating at least once a day may be helping , although I’m becoming more constipated by eating it and there’s no guarantees it even doing anything . Very fraustrating . But something is triggering it. The night before last when I did this post I woke up with it 3 times and then got up at 4.30 when I couldn’t deal with it anymore, but last night although I could feel it lightly in the background , I slept through till 7.10?????

RCHD profile image
RCHD

I feel for you. My husband is in a similar position. I think that restless legs is often a symptom of coming off previous drugs.. you are fortunate it doesn’t happen all the time. I wish I had an answer. It’s super important to be on it with your health in all other ways especially with diet. You might want to try an integral medicine person. They are quite good and some very successful treating rls.

Mum007 profile image
Mum007

if you feel it coming on spray your arms and legs with magnesium spray. Can be bought from Holland and Barrett or Amazon. 8-10 sprays should do the trick and I can usually settle back down again 9 times out of 10. Also check your diet. Any fizzy or carbonated drinks are a no no, as is sugar, particularly artificial sugars and alcohol. I wouldn’t take any iron tablets which again you can buy from Holland and Barrett called gentle iron until you have had the full blood panel done at the doctors.

Sinead12 profile image
Sinead12

I don’t drink fizzy drinks , although if I’m having a mild episode I will sometimes have a glass of Indian tonic water for the quinine , which can sometimes make a small difference. No alcohol and very low sugar , maybe once or twice a wk I’ll have a piece of home made nut flapjack or something similar which has a very small amount of maple syrup . But I am considering trying carnivore once my kids go back to uni after Easter to just illuminate any possible triggers and see if it makes a difference

Ducatidave profile image
Ducatidave

hi Sinead. Please, please look at my first post. I have RLS and don’t take drugs I just watch my diet. I also have ‘fixes’ that work for me…

My rules are

STAY away from salt. All salts

Caffeine doesn’t help

Choc sadly also doesn’t help me.

My fixes are

Very hot ‘bean bag’ out of the microwave placed on my affected area. As hot as I can bare

Knocking or hitting the areas ( I find that if I use my knuckle I’ll find the spot ) Don’t abuse yourself just short sharpish hits.

Hope above helps

Dave

Sinead12 profile image
Sinead12 in reply to Ducatidave

how do you keep your sodium levels up? I definitely lowered my caffeine intake , I love coffee and even have a coffee bar but noticed my caffeine intake was too high when I realised I was getting anxiety feelings and could feel my heart racing when I had fresh ground filtered coffee , so iv switched back to instant but I only have 2 cups a day and no more after 11am. Chocolate I still do have on rare occasions. I have 2 squares of 90% chocolate but I haven’t noticed any triggers with eating it or not eating it. I have read a few things on thiamine ( vit b1) levels possibly playing a part so iv tried to get one load of marmite into my diet each day . Anyone heard anything about that ?

Ducatidave profile image
Ducatidave in reply to Sinead12

when you consider that salt was added into our diet due to the advantages of it preserving meat it was not part of our normal diet except of course to the foods we eat with natural salt in. Marmite I am guessing must be really high on salt. I went ‘cold turkey’ on NO salt for a week. Even staying away from processed foods and the change was massive. Please do something like that and let me know.

twizzle303 profile image
twizzle303

Hi Sinead, I take gabapentin, I was first prescribed it for pain and sleep issues which we finally found out was due to my hypermobility *no cure)and autoimmune thyroid which is now successfully treated with replacement thyroid hormones. But I have had RLS since teens, both my parents also have it and sadly my boys get it when very tired or stressed. I was suffering badly with both RLS and PLM (woke me from sleep) so asked my doc for Gabapentin after showing him the evidence. I only take 500 -600 a night at 9pm which is enough to calm or stop my RLS from triggering. It is a long term thing but I have not found it addictive nor hard to come off (I stop occasionally to see if my RLS has abated) if you do it gradually. It works by supporting GABA in the brain and GABA is what calms over firing nerves. Good luck, it is used to treat epilepsy amongst many other nerve related ailments. Good luck on your journey.

Sinead12 profile image
Sinead12 in reply to twizzle303

I had seen a research paper on cross over of IBS and RLS which showed a higher chance of having one if you have the other and vice versa but am noticing a lot of talk about thyroid too. Strangely enough my mum has RLS but only deals with it maybe 1-2 a year but is on medication for thyroid issues and within the last year has also been dealing with new IBS diagnosis . I wonder whether all these things could have an underlying link . If I manage to get this iron panel done and it does show anything I might tell my mum to ask for one done to see if we share any similarities. Have you noticed any possible links between your thyroid and RLS or do them seem completely separate

Svengolly profile image
Svengolly

Gabapentin works within appr 30 minutes .

Gabapentin and L-dopa were the only drugs that worked for me .

Sadly Gabapentin augmented fast and L-dopa alledgedly long term has bad side effects .

The solution i found and wrestled my neurolgist into doing ..

was a week on gaba with growing dosage .. 300 up 900

then 3 day holiday on l-dopa ..

then back to gaba .

in reply to Svengolly

Svengolly, are you still on this particular drug regimen?

Svengolly profile image
Svengolly in reply to

no because I cured my raging RLS … I posted how in my next reply. If you don’t see it for some reason, please get back to me.

Svengolly profile image
Svengolly

Odds of eliminating RLS are pretty good ! …

Studies at John Hopkins have shown 50% of rls sufferers get total relief ,

and another 25% partial relief by raising their Ferritin Level (stored iron) !

I had unbearably horrific rls until i raised my low Ferritin levels.

But note some sufferers have "normal" Ferritin levels and only

benefit when they raise them to HIGH levels.

Sometimes as even as high as 400 to get relief.

There is a small chance a person can have dangerously high iron levels so iron and ferritin blood levels should be tested before piling on Iron .

It took me 8 (horrific !) months taking expensive Heme Iron supplements to raise my Ferritin levels ..

but then i got total relief.

I took one of each of these a day …

amazon.com/Proferrin-ES-Pol...

amazon.com/gp/product/B005C...

Five years later my rls came back strong :(((

& no surprise .. my ferritin test came back low .

I was also anemic.. so i was (thank God & Dr. ) ordered iron infusions, and within 2 weeks my rls evaporated , as well as 30 years of insomnia !!!

This whole nightmare (as well as a dozen gut and other health problems)

were surely caused by my stupid choice to be a vegan/vegetarian .

Two years ago i went on the Carnivore diet

(which fixed my 5 decades of gut & nueroligical issues in months) .

I ate tons of grassfed beef , plus some mega-iron rich beef heart monthly.

Meat iron is way higher & more bio-absorbent than plants ...

needless to say my iron/ferritin levels are 5x higher than my veggy years !

If you fear saturated fat or meat or think it’s unethical like i did …

imo we have been grossly misinformed or worse disinformed .

Watch the movie Fat Fiction … Google MeatRx …

and bear in mind our the mainstay of our evolutionary diet was fatty “grass-fed” animals .

Google eatwild to find local humanely raised grassfed meat

Rls treatment

Management of restless legs syndrome and periodic limb movement disorder in adults

Meta-Anne profile image
Meta-Anne

Sinead 12 for starters I wouldn’t recommend drugs only for RLS particularly the drug that has been subscribed. For my restless legs which generally start in the afternoon around 3pm I sit with legs elevated with a heated pad under knees which covers part o the leg also. Then when I go to bed at night take Panadol Osteria and take a frozen gel bag for under the legs. I have found that these two work. Also try exercising particularly walking. However if you miss a day the restless legs will be more trouble. Do hope these hints help you. Cheers

2islandboy profile image
2islandboy

Hello all, an earlier post above stated "If you are taking Gabapentin, as I am, you can't take magnesium. Magnesium even in small doses stops the efficiency of the gabapentin." Comments please. I take 240mg magnesium glycinate at noon, then 300mg gabapentin 4 hours before sleep and 600mg gabapentin 2 hours before sleep. I am working myself off of the dreded Pramipexole, currently at 0.125mg. I am having a full iron panel and complete blood lab next Tuesday(fasting, etc.). and will be seen in Dr. John Winkelman's clinic on April 11. Any comments on the magnesium, or anything. You folks are lifesavers!!! PS: Power is off and on here, so if I don't respond, that's why.

SueJohnson profile image
SueJohnson in reply to 2islandboy

Magnesium is fine as long as don't take it within 3 hours of taking gabapentin.

2islandboy profile image
2islandboy

Thanks Sue, all of your detailed advice has me very well prepared for my vsit to Dr. Winkelman's office.

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