Hi i have severe RLS both day and night, which is also body wide. My doctor as prescribed an anti-seizure medication, so far I have managed to stay off meds, but my symptoms are now too severe to ignore. I just wondered if anyone else as tried an anti seizure ?
Anti-seizure medication: Hi i have... - Restless Legs Syn...
Anti-seizure medication
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newlife54
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1. If you're talking about anti seizure meds alpha 2 delta ligands gabapentin or pregabalin, these are now first line treatments for RLS: read the CHRONIC PERSISTENT RLS section in here:
Note how these drugs should be taken for RLS: many doctors are unfamiliar with the best treatment regime for RLS.
2. But before you embark on ANY medication for RLS, read the MEDICATIONS TO AVOID section further down that same link: there are many medications and supplements that trigger RLS. If you're using any of these come back here and list them for advice on alternatives.
3. And, furthermore before starting any medication, have you had your ferritin levels checked? Read the paper on iron therapy here:
rls-uk.org/_files/ugd/b0a19...
Thank you
I note that Sue below - and apparently others previously - query whether your symptoms are consistent with a RLS diagnosis. If you have (say) Benign Fasciculation Syndrome a different regime might be appropriate, e.g.:
my.clevelandclinic.org/heal...
Chris please read my reply. The tablets are Carbamazepine
Hmm. It's certainly not a straightforward case of RLS.
This is what carbamazepine is generally prescribed for in the UK:
bnf.nice.org.uk/drugs/carba...
Have you read through the whole of that Cleveland Clinic link on BFS (not just the Management & Treatment section that I particularly linked to). Did the neurologist perform the kind of tests mentioned in the Diagnosis section? (Although the Cleveland Clinic is of course a US clinic, and UK neurologists might not do the same...).
I can find little info on fasciculation on NHS/NICE sites: I did find the following:
gpnotebook.com/en-GB/pages/....
Few GPs and neurologists in the UK (and indeed much of the world) are knowledgeable on RLS - it's not included in their training - and perhaps the situation is similar on fasciculation. Hopefully Sue or someone else here can often further advice/information. I'm afraid that I have too little experience or knowledge of other conditions to help,
Looking back, I note that Joolsg reported fasciculation linked to her MS, writing "For fasculations, when they happen, I use medical cannabis. In your case, it could be linked to low magnesium, low potassium or low B12",
Hi Chris thank you for taking the time out to respond to me. Yes i have thought BFS right from the start, but it also seems to fit a lot of the criteria for RLS. The test done by the neurology department were nerve conductor and EEG test, plus testing leg strength and reflexes. He told me not one single fasciculation was visible on the screen., everything tested normal . Doctor did a total blood test and that came back normal other other than high cholesterol and kidneys a bit dehydrated. Both been rectified now. My doctor did point out to me that it was a muscular problem, and then gave me these tablets. I suspect its because they don't know what to do with me. Would RLS be a muscular complaint. I can literally feel the tiny muscle contractions as they occur. I am going to look into the diet side of thing with a fine comb, too much walking or driving seems to be the main trigger . I just feel a bit anxious about taking these tablets that is why I asked the question.
In your last post it seemed liked you don't have RLS. Members said it sounded like BFS and you said you moved your legs to be comfortable and did not have the urge to move your legs which is the main thing about RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Do you meet all of these? If yes I can give you some advice.
Thank you for your reply, I have to date had no diagnosis from my doctor or from the neurologist (who told me it was anxiety and I was causing it myself. I asked for a second opinion and was rejected with instructions for my GP to check me for Stiff Persons Syndrome (which thankfully came back negative ) as the neuro had ruled out MND , MS or and other conditions, this is when she has given me the anti seizure medication , with no formal diagnosis ) I myself decided I had BFS as my symptoms did not seem to fit the criteria for RLS. However since then I have myself determined that it is probably a mixture of both.
These are my symptoms : Continuous small muscle contractions in left leg and stomach area , large continuous spasms in left leg calf muscle (moves the whole thing). Starts in the morning and goes on 24/7.
Worse when laying or sitting, and when laying down symptoms move into other areas including face, neck ears etc.
Sensations feel like a sandstorm, pin pricks, hot and cold, creeping ants etc etc.
The urge to move them does not seem as severe as a lot of people, however just like everyone else when I do the symptoms go or at least get a relief.
There has been a progression in the symptoms and intensity over the 5 years I have suffered with it.
I have exercise intolerance, and driving is the worst.
I watched a video about an American surgeon who is now operating on people with RLS and the guys leg looked just like mine. Anderson Podiatry Centre (if anyone in the USA is interested. I'm in the UK ).
Its thoroughly miserable and I am feeling very sorry for myself right now 
By the way, it would help if you hit reply for what you are replying to as otherwise we don't get a notification of it and it can be confusing as to whom you are replying to.
So you are saying you don't have an urge to move them but when you do move them it goes away?
Hi Sue , from what other RLS's sufferers are saying the urge to move is over whelming. This is not really something that I have, although yes certainly when I move or even when just lightly rub my leg or abs it stops .
New life you have exactly and I mean exactly the same symptoms as me ….
I have muscle twitching it is visible mine started after bi lateral hip surgery but I also get burning stabbing or prickling crawling and an urge to move so I think mine is a hybrid bfs/rls that interplay with each other mine is widespread legs being worst but abdomen back arms being almost as bad and I get twutches in my hands and soles of my feet
I’ve too had emg nerve conduction and told no mnd or denervatio at this point
I’m on Topamax plus Pregabalin only just started Pregabalin and it helps I also have diazepam for the very bad nights of twitching when my muscles are so fatigued
I do believe it’s possible to have both conditions in tandem as I suffered rls on and off b4 but now have it alongside the bfs
Im trialling the timings of my supplements inc my iron and tracking my food and reached out to a medical cannabis clinic yesterday as I’m at my wits end.
Stay in touch because finding a fellow bfs/rls sufferer means we can support each other
Hi thanks for reaching out. For me I have had no formal diagnosis, just told anxiety from neurologist. My doctor suspected RLS and gave me Pramipexole, which I only took for a few days, at about 1/4 of the dose recommended. I did not feel good on it, and after reading about Augmentation I stopped them. I have been taking ibuprofen at nights to just get the edge off so I can maybe get some sleep.
More about my symptoms, they start as soon as I wake up and remain at a constant intensity through out the whole day, this can vary from day to day. But it is certainly getting worse. The sensations feel like pin pricks, sandstorm, fizzy pop in the legs. The abs however feel like someone has but my muscle wall in a vice and is squeezing it, then putting pins in it at the same time . Does that make sense to you ?
Sometimes the twitching/spasms are in my back, my hips ,my neck , my head and face (very rarely arms and thighs ).
Exercise for me is the main trigger, and driving too far keeps me up all night and having to stay in bed to rest the muscles the next day.
I don't have the urge to move legs that a lot of RLS sufferers complain about, but all the other symptoms seem to fit.
I can see the muscle twitching/spasms in my calves , the neurologist did tell me that not one twitch was visible on the monitor, which is very strange.
Its a nightmare and I don't blame you for reaching out to the medicinal cannabis clinic, please let me know how that goes. xxxx
Hi new life yes my twitches I can see I have videos of them in my feet calves thighs and arms
Mine are weirdly worse in the morning and exercise drives mine crazy my abdominal ones feels like popping other sensations I’m getting are a tugging feeling which I suspect is a hypnic jerk type movement as my partner has reported me jerking in my sleep my arm and hand being the worst
My muscles feel fatigued when I’m in a flare this is my worst flare yet in The 6 months this has been going on I think once the muscles are fatigued and tight they twitch even more
The diazepam is my only way out when it gets this bad as my muscles get so tired I then start to fall down the MND rabbit hole thinking I’m losing the use of my hands as they are so badly cramped they become useless my neurologist told me anxiety too then changed it to BFS and now has referred me to endocrinology after rheumatology picked up I wasn’t retaining calcium although my levels are back to normal again despite my symptoms being worse than ever
I get twitching hotspots that vary but I’m rarely a minute without some kind of muscular twitching happening day or night the restless legs sits underneath this for me as it’s a different sensation but the 2 feed each other
I will stay in touch and look out for your posts and keep updating in here with my appointments and progress it’s mentally tough due to the MND worry but I’m determined to try and either work it out or live my life the best i can by figuring out my new normal I’ve just come out of 2 weeks of non stop crying with a determined head on to try and tackle this again
Stay in touch xx
Oh bless you. I have no worries over MND or any of the other nasty's as I have had this nonsense for 5 years now, and the decline is rapid with the main nasty's. Try not to think about that !!
About 3 months ago I went for a massage at a Thai beauty salon and the lady told me my muscles were the tightest she had ever come across, including men. This actually prompted me to return to the doctor's and get a 2nd opinion. The neurologist dept declined to see me as they said they had done all the tests and nothing was wrong ! They advised my GP to do a full blood test, and to test for Stiff Person's Syndrome, that is what Celine Dion suffers with, it came back negative on that , thankfully. The bloods all ok other than cholesterol high and kidneys a bit dehydrated due to me drinking coffee and not enough water. I have hopefully rectified that now.
I do think my condition is mainly muscle spasms, with a bit of twitching. and lots of weird sensory sensations. I may put a question out to the group to see if there sensations are caused by muscle spasms, its easy to feel if they are. Are yours mainly muscle spasms ?
Let me know what they say in Rheumatology .
My whole body is restless actually so I think I have Restless Body rather than Restless Leg. Its sucks
Hi Newlife, I'm so sorry for your whole body discomfort. It sounds unbearable. As you mentioned kidneys, I'm sure that you are taking electrolytes early day, this helps kidneys and muscles. Also magnesium with D3 and K2. Many of us here are taking these supplements. Lastly, I find using a massage gun to tame down muscle spasms could benefit you. It disrupts the cramping. Take care.
Hi thank you for your kind reply, I drink a lot more water than I used to as I also drink coffee, and was not doing so before. (I think the coffee actually helps the symptoms but I am not sure !). I do not take electrolytes on a daily basis however, and it could be something to look into. I do take magnesium but not those other vitamins. I have air compression socks, which i use after every walk or drive, they help a bit. My symptoms are awful at the moment as the weather is hot and I cannot tolerate either too hot or too cold.Its a minefield it really is x
Hi lovely funnily enough I’ve just got back from the osteopath who says my muscles are rigid so I think the whole stiff muscles exacerbate the twitching and then perpetuates the cycle. I will deffo keep you updated and we can stay in touch on here I’m booking a series of sports massages and the osteopath is going to do some myofascial release next week so I’m hoping it settles it down a bit she also says I need to see a podiatrist as I’m load bearing wrong and that is contributing to strain on my calves hips and SI joint so need some custom made soles
Mine are a combo of twitches and spasms which happen all day and I can visibly see and if it’s a bad or strong twitch it will jerk my neck my hand my foot or my arm for example
The restless legs I get is more the creeping crawling burning sensation
Xxx
Wow that you have also been told about rigid muscles, do you think a muscle relaxant might help us ? I asked my GP and she kind of skirted around it and did not seem to want to prescribe one . I don't know could be something to look into ??? I googled myofascial release and I think that sounds really good, as it is supposed to release muscle tightness , so please let me know how that goes. I also think the muscle tightness is causing the spasms, it has to be something to do with it.
I was at a wedding function last night and was on my feet for several hours, my spasms are off the scale and I have hardly slept. My mobility is getting less and less. Exercise as in just walking is my main trigger for these spasms.
Is muscle twitching and being able to see it something people with RLS suffer with or is that the BFS side of things, its so confusing
I have diazepam which helps at night when it’s really bad but I don’t want to take it long term but it deffo relaxes the muscles.
I will let you know about the myofascial release & anything else the osteopath does to see if I get any resolution I’m also tracking everything for last 2 weeks supplements food drink alcohol meds activity sleep to see if I can spot a pattern so again will keep you updated hun
Xxx
I have planned to track everything myself also from tomorrow, for the same reason, so we can compare. Weather extremes also effect my spasms, during this hot spell they have been dreadful. Also if I wake up at night, a small drink of coffee seems to help me get back to sleep, which is bizarre ????????!!!!!!!!
Regarding the twitches / spasms. Its almost written in stone that when I am at rest they are very active. If I lay on my back they are worse, also if i lay on my right hand side they are bad, sleeping on the left hand side is the most comfortable position for me . I have noticed :
1.. Just before I fall to sleep and my body is obviously totally at rest, the spasms stop, or at least I feel that they do.
2. My ex partner told me i do not twitch when I am asleep, this may be true or not ?
3. Any movement aggravates them, eg moving around in bed etc.
4. Any weight bearing activity at all, aggravates them.
5. Sustained activity like driving walking too far or even standing too long aggravates them tremendously.
I am experimenting with doing short bursts of activity, say 20 to 30 mins, and then resting for probably same amount of time . I need to know my capabilities , as been awake all night because I have over done it , is not fun.
Can you relate to this at all ? xx
I can absolutely relate to this I think I do twitch in my sleep but nowhere near as much but it’s localised to soles of feet calves and hands mainly with a really strong one in my left tricep
I only know this as I’ve felt these as they’ve woken me up and these areas feel tight and fatigued in morning
If I sleep on my left I’m infinitely worse the next day and the left arm weakness is more prevalent
I will do a longer reply later hun as we are just popping out for some fresh air which I know will ramp up the twitching but I’m going to try all my yoga stretching when I get back
I will also tell you about the rapid transformational hypnotherapy I had on Friday in a message later
Have a good day and hope you are ok xxx
ok hun, also going to take the dog out for 30 mins. Enjoy your day. Catch you later x
Hi, I’m back from our walk hope your dog walk was nice
What I’ve discovered the last few weeks since I’ve been tracking and trialling different things is if I do a series of stretches, nerve flossing and yoga poses when I get back from a long walk I can calm the twitching down quicker if I forget the muscles tighten up then the twitching is off the scale for upto 48 hours also if I exercise too late the restless leg symptoms worsen.
We’ve just been for a 2 hour walk and in the car on the way back my legs were going mad but after I’d stretched done the yoga moves back at home it calmed down by 40% but didn’t go entirely.
Last week I saw the osteopath who’s trying to do soft tissue manipulation myofascial release and work on the basis my hips SI joint pelvic floor and muscles in general are too tight.
I also went to see a rapid transformational therapist it’s like hypnosis and she did me a recording to listen to at night I have to say the last 2 nights my anxiety has been much reduced I’m not saying it will fix me but if it helps me cope better then that a bonus.
I’m waiting for my gp to release my medical records for the medical cannabis clinic I contacted.
I am addressing the restless legs and iron issue as per all the brilliant advice in here and have repeat bloods this week so we will see what my numbers are and if supplementing is helping my numbers rise. I do find during and after my period my restless legs is worse.
I think our symptoms are v v similar as everything you put above I can identify with.
I hate standing in one place for too long and I’m unsure why mine seem to be worse first thing in morning but i guess as I stir and move the muscles suddenly fire up. I think my whole central nervous and peripheral nervous system is out of whack. I’m getting nerve pain too which I suspect is a kick back from the hip surgery.
I will keep you posted this week how my appointment with endocrinology goes.
Enjoy your Sunday hun xx
Hi love, yes the walk was good. I stopped after 30 mins to massage my leg and foot (left side), have done stints of walking (basically trying to have a life) after that and hope i have not done too much. Could you tell me which stretching exercises you do, and what is nerve flossing ? Like you my twitching/spasms can take up to 48 hours to calm down. After standing for 3 hours on Friday night, i was awake most of the night and spend most of Saturday lying on the bed, as I was knackered and did not want to further aggravate the spasm.
Did they tell you why the muscles have got so tight at that myofascial release place, and did it seem to help at all?? If the hypnosis works then that's a bonus.
I do the Wim Hoff breathing to get my anxiety down, it works really well for me. I also go for infra red sauna and am doing the Wim Hoff cold showers, but can only do about 30 seconds at the moment.
My RLS symptoms are sitting in the background at the moment, because my spasms are so severe. Sue as advised me to make an appointment at the GP and get an Iron Panel Test (I think thats what she said, will have to check). So I will phone the GP tomorrow and do that .
My spasms are like waves going up and down my legs and abs or where ever they feel like going. Like you I also think my full CNS is out of whack, it has to be, because this is not normal.
I feel so tired quite a lot too, and was wondering if it makes you feel tired ?
x
Hi hun
Here are some links to some nerve flossing I’ve been doing:
youtu.be/vk9YElLm57Y?si=ITN...
youtu.be/e47FCl90psA?si=z9B...
and these are the yoga stretches I’ve been doing:
I try to do these if I go for a long walk or at least some of them.
youtu.be/lbyHCkNEOKo?si=mFc...
the osteopath thinks mine have tightened up over years of exercise and then the final straw was the surgery which moved my hip position. The soft tissue manipulation seemed to help and she’s doing a full myofascial release this coming week so I will keep you posted .
The wim hof method is supposed to be good and I remember Sue advising cold showers can help alternated with warm water so I might try that too. I think we all need to just keep trying to find things that help us and then share in the hope between us as a collective we can help others.
I’ve found this group so incredibly supportive and I can’t believe I found someone with symptoms do similar to mine with the twitching too.
The exhaustion for me has been one of the toughest things prior to this I was really fit and never felt tired now because the muscles are firing so much I’m stiff crampy spasmy and so his damn tired!
I’ve found the biofeeeze gel at night helps on my legs when they are going crackers. But the ones in my abs I can’t seem to get under control. If you have a Costco membership 2 tubes there is only £12
I will keep you updated with everything this week hun and hope you sleep better tonight
Xx
Hi hun just a real quick response to this, will reply more later. I used to be a middle distance runner, did weights and walked miles with the dogs another similarity ?
I did a lot of running biking hiking weights and CrossFit prior to my surgery now all I can do is walk as the muscles just can’t tolerate anything else the 8 mile hike yesterday meant the twitching last night was bad xx
Did you get any sleep ? You sound just like me, my exercise intolerance due to muscle spasms is the worst thing. I have realised I just cannot do anything (even walking or standing ) for any amount of time. Yesterday I did the dog walk (stopped to massage my legs after about 30 mins) walked home (another 20 mins or so) . Massaged my legs and put my compression boots on for 20 mins. Rested for a while longer. Drove for about 20 mins, walked round the town for maybe another 40 mins (massaged legs before driving back home) drove home (put compression socks on again for another 20 mins). Did odd bits after that but not much. Took 400mg of ibuprofen. In bed the spasm were quite bad, especially in the stomach, which like you I cannot do anything about.
Like you said, our muscles just cannot tolerate anything more. So for us it seems like anything we can do to ease this tightness, which I am now wondering , does it have anything to do with our background in exercise ????
I put a message out asking other members if anyone with RLS spasms had a background in sport. Have not had many replies so I think these spasms are maybe more to do with the BFS side of it. The RLS symptoms seem to sit underneath the spasms, with the pin pricks, tugging, crawling etc.
I agree I know I have restless legs as I can feel the prickling tugging crawling underneath the twitching and the odd few times the twitching dies down the restless legs is there at night lingering
I do think there is interplay between the two
I think BFS is partly structural and biomechanics of body ie spinal position muscle tightness and can be influenced by lack of supplements or incorrect homeostasis the more I research and talk to professionals the more I’m determined to try and find coping strategies to allow me done kind if normal ie hiking without being up all night. I did sleep but it was broken
I did my hypnotherapy before bed but the twitching was crackers and I had the popping candy and crawling of the restless legs I also had PLMD IN MY LEG last night my partner said I kicked the cover up in the air as he was awake as I’d been so fidgety I’d woken him. My calves were super tight when I got up this morning
Xxx
I am trying to find coping strategies too, and ultimately a cure ??? Quick question . Does coffee effect you at all, I am on the fence with this one, as sometimes I feel it helps and other times I feel it makes things worse ???
I occasionally drink decaf but have cut it out as trying to cut out anything that might stimulate me
I am feeling I should too
Do your symptoms get worse in the heat. Mine have been horrific during that warm spell, they seem to have calmed down a bit now ?
My restless legs and nerve pain and twitching is off the wall today but I suspect it’s because they gave me sedation drugs inc fentanyl yesterday at my endoscopy
full panel iron test
Do your symptoms get worse in the heat ?
No but they are under control but I don't remember that happening before they were under control.
I have got a telephone appointment with the doctor in a couple of days. I know she is going to ask me why i want this test done and what I am looking for. Can you advise please ? I am based in the UK and i do not think most GP's know anything about RLS or BFS
Tell the doctor that it is advised for people who have RLS by the Nice Guidelines.
Thanks
Anti seizure medication is correct first line treatment for RLS..It takes 3 weeks to be effective.
So, you may as well try it to see if you get relief, but bear in mind it doesn't work immediately.
I was given dopamine antagonist medication at first, did not like it. Pramiprexole. I think I will have to try the anti seizure as its just not going away and its getting worse 
Pramipexole is a dopamine agonist and worsens RLS within a few years. That's why experts no longer prescribe it.Did you stop taking it? If so great. If not get off it very slowly.
RLS-UK has the withdrawal schedule and the Iron therapy print outs under 'useful resources'.
If raising serum ferritin above 200ųg/L and stopping trigger meds doesn't help, do ask for gabapentin or pregabalin. See RLS-UK for doses and timings.
I never took the Pramipexole for longer than a week, as I read all the bad reviews about it. My tablets now are called Carbamazepine. I only picked them up today so wanted to know if anyone else had used them etc. I dont know anything about raising serum ferritin, are you in the UK >
Yes - this is a UK help site.
. All RLS patients should have serum ferritin levels above 100ųg/L preferably 200ųg.Carbamezapine seems to work for many people.
If it is RLS improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. 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.
Ok I will make an appointment to see my GP asap.
Thanks i will mention this to my GP, it is not something I have heard of. Thats good that Carbamezapine helps, fingers crossed .
Taking pramipexole is a good test for whether it is RLS or not. If it reduced your symptoms or made them go away then it is RLS. Did it?
Hi Sue I took them for a few days only, after reading the side effects I was scared of augmentation, especially as my symptoms are already so awful.
Dopamine agonists work pretty much immediately if you have RLS hence it would be useful to know if you had any relief, even after one or two days. I have a pack of Ropinirole for situations where it’s vital I sleep or RLS symptoms are very awkward e.g. on a long haul plane flight and I take them very rarely but when I do the effect is immediate that night. I may wake but I don’t get physical symptoms and I go straight back to sleep. It’s a good test for RLS. Many of the symptoms you describe sound neuropathic I.e. due to damaged or injured nerves which I experienced for a while after a slipped disc and which the pain clinic I visited described as nerve excitation. My neuropathic symptoms moderated after a while thankfully as the disc healed but my RLS worsened a degree afterwards and there can be a connection between neuropathy and RLS. I took pregabalin (also an anticonvulsant ) for the neuropathy which helped reduce and cover up the symptoms but didn’t make them go away and also didn’t seem to stop the RLS so I stopped taking it. However generally it’s not a difficult drug to obtain via your doctor, it can be effective for RLS, and while some people have significant side effects, others do ok on it and it’s not difficult to reduce and come off it if you don’t find it helps or the trade offs aren’t worth it.
Hi , I dont remember too much about them other than I felt like hell, woke up feeling seriously hungover and had vivid dreams.
I was also convinced it was neuropathy at one stage but all the nerve conductor tests etc came back clear.
I have been given Carbamazepine from the doctor, but I am not sure she is treating me for RLS , it was me complaining that I could not do my job as driving and walking too far set my symptoms off more than anything.
Its a nightmare for us all, and I guess we just have to keep trying different things.
I’m not sure nerve conduction tests give you the whole picture. Your central nervous system can be physically ok but the whole network in a state of high sensitivity and alert because of previous trauma. If you Google central nervous sensitivity or sensitisation there are quite a few articles about it. That said, obviously you know what’s going on with yourself and there are enough links between nerve issues and RLS to support some sort of combination. Maybe it’s worth taking Carbamezapine carefully to see what effect it has, then you will have more information and there’s nothing to say that you have to keep taking it. Other people here have said it helps so an experiment may move you on a bit or rule it out altogether. That’s the approach I took with pregabalin as I’m generally very anti medication. All the best.
I actually do believe my who CNS is always in fight or flight due to past trauma. It feels like all these symptoms are the end result. Just nothing seems to shift it. I am also very anti meds, which is why I have reached out to the group. At the moment the weather is very hot and thats another trigger so my symptoms are insane. Think I will have to try the meds and just see. Does pregabalin work for you, as a few people on here have mentioned it ?
Pregabalin helped reduce and cover up the neuropathic symptoms but didn’t make them go away and also didn’t seem to stop the RLS so I stopped taking it. However I hadn't diagnosed the RLS at that point and just knew I was waking up a lot in the night so it's not clear whether the pregabalin did anything. What was clear though was the slight cognitive fog and disinhibition that came with the pregabalin, a little akin to having a couple of drinks, and I know that even if it it stopped the RLS and I got my full sleep back I am not yet at the stage where it's a worthwhile trade.
Carbamezapine may help but it is not what is usually used for RLS. Gabapentin or pregabalin are but you don't want to take both at the same time so I will hold off giving you information on them.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Hi Sue that is really good advice. I have tried a few of those ideas but there is a lot I have not tried. I think coffee actually helps me, but in moderation. It is my intention to start a food diary as I am positive certain foods makes it worse. At the moment I am really struggling as I have eaten peanut butter and Greek yoghurt and chocolate, my symptoms are off the scale ! Exercise wise I cannot walk for too long or the spasms are awful, driving is the worst. I have some air compression socks which I think helps a bit also. I have got by using just Ibuprofen but its not enough any more as my symptoms have got worse. I will certainly try anything that may help.
I have been on the anti seizure med lacosamide (brand name in U.S. Vimpat) for RLS with good relief over the last several months. The initial excellent effect waned after a bit and I am supplementing with other meds.
Like you, I also have neuropathies plus spinal surgeries in the past — you can look at my profile and posts. Very similar with RLS, PLMD and all of the stinging, shock, burning sensations, 24/7, legs, feet, arms and body sometimes. A restlessness that feels like it’s ENTIRE at times.
BUT we are all different. I augmented after several years on a DA. You might have more info and support starting with the Mayo protocol and their first line recommendations. Advice here is often complex but it’s worth the time to do your research and reading. Welcome to a wonderful support team. Best of luck.
Thank you for taking the time to reply, We are indeed all different, and one size does not fit all. But it is helpful to read what others are doing, and try them yourself.
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