RLS nightmare disease: I’m a 48 year... - Restless Legs Syn...

Restless Legs Syndrome
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RLS nightmare disease

I’m a 48 year old male, recent diagnosis of RLS (year ago). I have tried a range of dopamine agonists- didn’t work. Am now on gabapentine and amitripaline - the last 4 days - they don’t work either. Mood has dropped significantly. Appetite has dropped, don’t see a way out of this at the moment. Struggling to maintain work as always tired. Don’t know what to do next??

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Sorry to hear about this Jay.

It's good in a way that the dopamine agonist didn't work, because it could cause problems in the long term as many of us have discovered. Much better to start on Gabapentin.

Gabapentin doesn't start to work immediately. If as I think you're saying it's only a few days, then it's too soon to say it's not working. You need to give it a couple of weeks .

I don't understand why you have been given Amitriptyline. This antidepressant used to be prescribed for depression. More recently it's been prescribed for nerve pain and fibromyalgia.

Amitriptyline is known to make RLS. WORSE.

It's just my personal suggestion, but if you've just started taking Amitriptyline, I would stop taking it immediately.

If you need something for depression, there are alternatives which might help that are known to be "RLS safe". Certainly antidepressants from the "Tri-cyclic" or "Selective Serotonin Reuptake Inhibitors" groups can make RLS worse.

If you aren't suffering at least moderate depression then you don't need an antidepressant. Definitely, no antidepressant will help with RLS unless it's causing insomnia.

If your RLS is preventing sleep, it would be better to have a benzodiaxepine. I have used Clonazepam.

I wonder WHO diagnosed your RLS, hopefully it was a neurologist (specialist). It is fairly common for GPs (Primary Care Practitioners) to be NOT particularly knowledgeable about RLS.

I also wonder what advice the doctor gave you, e.g. about how long it takes for Gabapentin to work, (apparently not), what dose you can take and how you can INCREASE it, (apparently not) and what is the maximum dose you can increase it to. Plus, side effects. Up to 900 mg per day for RLS.

google.com/url?sa=t&source=...

In the UK it is a legal requirement for doctors to gain "informed consent" before carrying out treatment. (I'm not sure about US law). Prescribing a drug is carrying out treatment. By accepting the prescription and taking Gabapentin you are giving implicit consent.

However, unless the prescribing doctor informed you about why the drug is being prescribed, what its benefits are, what the risks are, what side effects it has and what alternatives there are, then they are not "informing" you. Furthermore, it is insufficient for the doctor to simply give you the information, they have to ensure you have understood it.

"Informed" requires both that you have been given information and have that you have understood it.

In addition, and I presume this doesn't apply to you, but if anyone is incapable of understanding, the Mental Capacity Act (UK law) kicks in.

Sorry about this bit of a rant, but it worries me to think how much these laws are simply ignored and people don't even know what their rights are. It is in fact illegal.

I also think that your doctor should carry out some tests to see if there is something causing your RLS, i.e. it is secondary RLS , rather than presuming it is primary (idiopathic) RLS. It is worthwhile having a blood test for "ferritin" levels. This is because RLS is associated with a lack of iron in the brain. This cannot be detected by a normal blood test for iron i.e. haemoglobin level. Furthermore, for someone with RLS their ferritin level need to be higher than normal. Being told your ferritin level is normal is insufficient.

See

aafp.org/afp/2000/0701/p108...

or

rls-uk.org/news/rls-and-iron

It would also be useful to be tested for Vitamin B12

Problems with your thyroid gland, kidneys or liver might also lead to RLS, but unless you have identifiable symptoms of any problems, it's probably not worthwhile having tests for these

Overall, what I write is based solely on what you've written. I am not accusing your doctor of anything, they may be a very good doctor. It only seems to me that your RLS is being mis-managed.

Finally, I suggest you arm yourself with information about tests and treatments for RLS. What their benefits and risks are and take this information to your doctor.

You might find this link a good start

cks.nice.org.uk/restless-le...

If you're in the UK, this is what your doctor SHOULD do. Also useful to give you some idea if you're in the US.

UK - consent

bma.org.uk/advice/employmen...

A good source of information if you're in the US

rlshelp.org

Informed consent in the US

ama-assn.org/delivering-car...

I hope this is of some help

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Wow Manerva, thanks for taking the time to reply. It was my GP who initially diagnosed my RLS, then Neurologist a week ago - the neurologist recommended my trying a patch -dopamine agonist despite me already having tried 2 different ones before. She also recommended Gabapentin 300mg TDS and a low dose of amitryptaline 10mg nocte to aid sleep. I’m suffering mild depression but am starting to feel effects of lack of sleep. I’m a mental health professional in NHS so am good at monitoring my mood etc.

I have had a standard blood test, but not sure whether that included ferritin levels?

I have tried Zopiclone, and benzodiazepines both just make me feel incredibly tired, but once RLS kicks in I can’t sleep anyway!

I’m pretty healthy, vegetarian and eat well, I train regularly although over the last year I have reduced the intensity which does coincide with a worsening of symptoms?

I have another appointment with my GP in 3 weeks for a review and further blood tests, I will ensure ferritin levels are checked. I have another appointment with neurologist in 3 months and if things have not improved she is going to send me to a specialist.

Oh, my GP and the neurologist both didn’t explain anything about medication- just take it!

Thanks again for your response

Neil

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I edited my post several times, so I hope you re-read it to get it all.

Sorry about irrelevant info re the US, some members of this site are American, other nationalities too.

I could have also included non pharmacological measures for RLS too, but they're not my forte and I didn't want to go on and on.

You will get other responses about these.

As regards insomnia, I've tried Clonazepam, but it only helped a little. I was recently prescribed Zopiclone, which has a shorter half life hence shouldn't leave you dopy the next day. I never took it though. Didn't think the benefits outweighed the risks.

I have found "sleep hygiene" measures as effective, possibly more so. If you look that up. Particularly, look up the influence of exposure to natural light on sleep.

I also follow the "15 minute rule".

As a mental health professional, I guess you will know about the Mental Capacity Act.

Hopefully you will know about ways of avoiding over anxiety, the killer of sleep! Plus psychological measures for depression. I have found mindfulness CBT helpful.

Being vegetarian is good, I've been veggie for 44 years. Some say being vegan is good for RLS, but I don't want to be that extreme. Some on here will suggest other diets which might help, some will suggest supplements. I only take B12.

Certainly avoid, (more than a little) caffeine or alcohol.

It's early days for you, you've come to the right place, lots of good info on here.

OH, I should add, not all neurologists or neurology specialists are particularly knowledgeable about RLS either!

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is it safe to have B12 injections if on warfarin?

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Hi that is something i would ask your doctor. We dont know your health history to tell you if that is safe for you.

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why do u have this forum if all u can say is see yr dr?

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There is no need to be rude. Please read our forum rules. healthunlocked.com/rlsuk/po...

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Well said, how can people be so rude, l have always found this forum such a comfort in my struggling hours of suffering

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That wasn't bullying

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Because we are NOT doctors.! And will not commit to telling somebody to take something we are not qualified in.

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We ARE being responsible! We cannot just say, "YES, you can do this". We know about RLS, but we cannot say if taking B 12 and Warfarin together is safe for YOU or not. We know nothing about you. Be nice.

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Academia this is a restless legs syndrome forum and many members have extensive knowledge of RLS and it's treatments, this doesn't mean that they know anything about B 12, Warfarin or your personal medical history. You mention the Pernicious Anaemia Society so surely that would be a more suitable place to ask the question. You might like to do a little reading up of manners too

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As Elisse says, you'll have to ask a doctor.

It is dangerous to take anything that has an anticoagulant effect because added to warfarin you could end up with a serious haemorrhage. Also risky to take anything that promotes coagulation because it will reduce the effect of the warfarin and you could end up with a clot.

Vitamin B12 has no effect on coagulation either way. BUT, it may affect Warfarin in ways I'm not aware of.

Luckily, you could not get a B12 injection without a doctor's prescription.

DO NOT take B12 tablets without checking with your doctor.

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thanks for your reply actually you can buy B12 injections online.

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Just because you can doesn’t mean that you should. Sounds like a dangerous idea

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why don't you investigate this before giving yr opinion. I suggest that you log onto the Pernicious Anaemia Society and then u will see how clueless drs really are.

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academia,

Please read our forum rules healthunlocked.com/rlsuk/po...

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I have been managing RLS groups for almost 3 decades on and off line. I can assure you that many people on here, including me, HAVE done our research. But, it would be irresponsible for us to hand out medical advice. We can say what we know what works for most people, what may NOT work and what DOES work for us.

THAT is how one runs a responsible SUPPORT forum. This IS a SUPPORT group.

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You could have written. we are unsure re warfarin and B12.

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I am NOT unsure. I just do NOT know your history, and neither does anyone else. But don't accuse us of being irresponsible

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I can believe that, I should have said you can't legally get it.

In any event, unless you have pernicious anaemia, there's no need to have B12 by injection, tablets will do.

People who have pernicious anaemia cannot make "intrinsic factor" in their stomachs, which is essential for absorbing B12 from their gut. No point in them taking it orally. They need it injected.

People who don't have pernicious anaemia, do have intrinsic factor so can absorb it. So can take it orally.

Whether you can get B12 injection or not, whether you need the injection or taking tablets is sufficient, if you're taking warfarin then I guess you have some fairly serious issue. In which case it's not advisable to take anything without checking that it's OK.

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I can appreciate that our health can be a quite emotional and possibly anxiety provoking thing for people. I accept that sometimes people on here might get angry at something I might write and with their own good reason perhaps. I'm not really sure what your reason is in this case.

You asked me a question and I took the time to answer it with the intention of being helpful. It would have been wrong of me to say it was OK for you to take B12 injections without knowing your full medical history and all the medications you're taking.

If you perceived it as rude to offer answers to your questions with some explanation of the reason behind my answers, then it would have been better for me to not respond at all.

You are right in thinking I'm not a doctor, but I was a Registered nurse for 40 years and for much of that time I was a nurse tutor, then university lecturer in nursing.

The information I wrote was perhaps simplified but not inaccurate. I always check such information before writing it and could if necessary give references to my sources.

Irrespective of that, I'm sorry if my attempts to help have angered you.

There are many members of this site who offer inaccurate, irrelevant or even sometimes unsafe advice. Most of them do it with the best if intentions. Some like yourself get angry, possibly for understandable reasons.

With this in mind and with regard to the ethos of this site, I try not to take exception to what people might accuse me of. Sonetimes, I accept they may be right.

This thread was started by Jay48 who was looking for help with their RLS. Your posts are not helping him.

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I too have several nursing qualifications.

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I studied psychiatric nursing, with a minor in chemistry. And, I work for the Pain News Network, plus many other organizations, FYI, and 30 yrs of managing RLS groups.

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Right, Manerva. :) Jay's thread got hijacked. If someone wants to ask a different question, they should start a new post.

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Academia, Please read the pinned post re forum rules. You are being unnecessarily blunt and rude. When you post something on a forum you will get replies, some of them you may not agree with.

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after you talk to your doctor.

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I did he does not know the answer neither does the acc .

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Well, then you need another doctor. We have to say talk to your doctor (disclaimer)b :)

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YOU can research this yourself, too. We cannot be expected to do it all for you. And, Warfarin and B12 have nothing to do with RLS. Do you HAVE RLS, and what do you do for it?

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Manerva, I second your comment regarding neurologists. A couple of years ago I saw some one at Kings who doubled my dose of Ropinerole. The onset of Augmentation was one of the worst experiences in my life!

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Hopefully you've now got over that, despite your neurologist!

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Jay48 sorry your post got hijacked by someone asking a different question, i hope you got some answers which helped you.

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benzos cause neuropathic pain, painful muscles and joints plus a host of other side effects. You would be well advised to stop taking them as they are also habit forming. Drs are only supposed to rx them for 2 to 4 weeks and then only in extreme cases. Pls see NICE Guidelines.

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that is not true for everyone. I take it with my other meds, and always make sure to take a break. You cannot just make a blanket statement like that. Everyone reacts differently. I did not have clonazepam for 2 months, no withdrawal. Everyone DoeS need to do their own research, getting off of dopamine meds for example is compared to withdrawing from cocaine, according to MANY experts and studies. But there ARE always exceptions.

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for SOME people, again, academia, there ARE exceptions. What is one person's experience is not necessarily the next person's. In the US, we do it in a case to case basis.

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I have NEVER heard of benzos causing those problems. I CAN give you a list that will help with FACTS, though. From the Foundation of Peripheral Neuropathy. meds that CAN cause the issues you mentioned- 1. Meds for HIV-Aids 2. Chemo meds 3. Anti alcohol meds 4. Vincristine 5. Amiodarone (BP med) 6. Cipro, and many other infection fighting meds. 7.Thalidomide 8. INH 9. Napsone (meds for skin conditions 10. AND, ALL statins. That is a summary, BUT the Foundation for peripheral neuropathy, and I think they would know, mention ZERO about benzos in this context. Just thought you would like to see this. It is on their web site.

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Please , please do not embark on going down the benzodiazepine route. It is a road to disaster. C clonazepam is more addictive than heroin etc. It takes years to get off and furthermore it only works for 2 weeks.

Drs are only supposed/allowed to rx benzos for 2 to 4 weeks pls see NICE Guidelines. My dr tells me he would be looking more at 2 weeks.

For verification of the above pls google NICE Guidelines. The Ashton Manual. Benzo information Coalition. Beating Benzos and other sources of information.

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depends on the person. I take clonazepam, and can stop it when I want to, I do not have to take it every day., Some people have personalities that are more addictive than others. The NICE guidelines are just that guidelines. One size does NOT fit all. Clonazepam has been on my PERSONAL med list for over 14 yrs. I have a GP, 5 surgeons, a gastro doc, and 2 neurologists. NOT ONE of them have a problem with me taking it that long, and I can stop it for days, and then go back to it. ONE size does not fit all. :)

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Interesting you didn't even mention the gut (IBS & Sibo) when it is a well known cause of RLS. I had RLS for several years, I also had Sibo, now I have neither..

One study found that 69% of RLS patients also had SIBO, compared with only 28% of controls. They also found that 28% of RLS patients had IBS, compared to only 4% of controls. ncbi.nlm.nih.gov/pubmed/215...

There's approx 38 diseases associated with RLS that are also associated with SIBO.

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Hi Mr. Penguin, I have RLS, but not SIBO. The test for SIBO is an amazing non-invasive test. The first time they just checked for hydrogen gas and then the second time they checked for both hydrogen and methane. Now I think they may even check for a third gas? How did you rid yourself of SIBO which I read is near impossible? I don't think that SIBO is the "root" cause of RLS. I think of RLS as a genetic mistake or shortcoming - we have smaller and fewer dopamine receptors than the average person and thus a lousy dopamine transport system possibly caused by improper brain iron metabolism or worsened by this fact. I imagine us dancing on the head of a pin and a good portion of us for a good portion of our lives have relatively mild, intermittent RLS symptoms. But still, we're on a tight rope and any little thing can push us right off, including SIBO. Correct the SIBO and we're back on that tight rope inching along. Then maybe your doctor prescribes an antidepressant and boom you have all out RLS symptoms. Or you have a full bladder or a full colon and there goes those legs. With SIBO I think it might be a very complicated provocation. The SIBO might cause a release of hepcidin (an amazing anti-iron hormone) which prevents absorption of iron from intestines or release of iron from stores in an effort to starve out the SIBO critters which need iron just as we do. No iron means full blown RLS.

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I was diagnosed with Crohn's, then Inflammatory bowel disease. I knew something was behind this & I was right, it was SIBO which resulted in leaky gut which set my immune system into attack mode attacking my intestines. The RLS was rife in the 6 months leading up to diagnosis & for 2 years after till I got a handle on things & started focusing on my diet & gut microbiome.

I'm not only RLS free, I'm free of Crohn's & IBD.. Whether it's possible to be actually free of them I don't know as I was told they were life long diseases but it's looking good. No symptoms whatsoever, no meds, best health of my life.

From my own experiences, it's inflammation which is behind the RLS when it comes to SIBO or any other gut issue. Doesn't need to be SIBO, could be Gluten senstivity, intolerance, undiagnosed coeliac disease, Inflammatory bowel disease, Crohn's, Diverticulitis.. Anything which results in inflammation around the nerves or nerve pathways or which sets the immune system off attacking the areas around the nerves running through the small intestines which then interferes with the Vagus nerve signalling.. There's studies showing stimulation of the Vagus nerve alleviates RLS ncbi.nlm.nih.gov/pubmed/174...

"The vagus nerve provides parasympathetic innervation to the majority of the abdominal organs. It sends branches to the oesophagus, stomach and most of the intestinal tract – up to the splenic flexure of the large colon."

You mention Iron deficiency, I can believe it as any of those issues with the gut could cause absorption issues for many nutrients.

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Hi mrpenguin, sorry I can't make out what I've written that you're replying to. Understandable since this particular thread has become very complicated.

i suspect you may be new to the site and perhaps you're replying to something I've written in another thread. If that's the case then it would be better to reply in that thread, not this one. I suspect it might be the thread about bladder trigger.

In any event, you're right, I haven't mentioned anywhere about the gut in relation to RLS. I didn't know there was any connection!

So it's great that you've told me.

I've only been on this site a few months, but it's amazing how much I've learned in that time about a condition I've had for decades.

So thanks for the info :-)

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Lots of RLSer's have no gut problems. They are studying it, but it is not "well known". RLS is a neurological sleep disorder.

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Hi,

I will re- read thanx.

I’m pretty good at not building up the anxiety of not sleeping, I meditate for 30/45 mins before bed and have Buddhist philosophy so just accept things, however, this is becoming increasingly difficult! Especially because I suffer in the day and I get it in my torso and arms!

Yes, agreed early days and I need to do the research myself and not rely on medical professionals!!

Thanks again 🙏🏼

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Amitriptyline can help with sleep IF you don't have RLS. Unfortunately it is poison to the vast majority of RLS sufferers.so I would also recommend getting off it asap.

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I agree with Manerva & Pippins- get off the amitriptyline. My arrogant neurologist put me on it, RLS went ballistic & when I mentioned it he said ‘Oh yes, that can sometimes happen’

It’s clear from this site & the USA site that the overwhelming majority of people with RLS will have increased RLS with amitriptyline.

If you stop that, you may find the Gabapentin begins to work. Avoid magnesium 3 hours before or after Gabapentin as they interact.

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Hi Joolsg

I took people’s advice last night - I stopped Amitriptyline. I had RLS but only for an hr or so before bed. I’ll continue and see if the Gabapentin kicks in.

Thank you everyone who took the time to reply

X

Neil

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gabapentin was never researched google Reuben Scott and Lyrica, anaesthatologist jailed for academic fraud

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Interesting comment but it would be more interesting if you attached a link to the article.

Most drugs used to treat severe RLS have side effects and we have to weigh up the pros and cons when deciding to take them.

With severe RLS, we often have no other choice.

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These drugs are soon to be strictly controlled so that begs the q what happens then?

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They already are strictly controlled here in England.. We have to double sign for them in the same way we do for opioids. It’s simply because drug abusers are selling them on the streets to get high. That doesn’t mean they are bad for RLS. Idiots will always abuse drugs if they are that way inclined.

Paracetamol is a dangerous drug if abused.

Most people on here are aware of the side effects of drugs but there is no other choice for those with severe RLS.

The alternative is no sleep and constant twitches.

I know which path I choose.

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Sorry but NICE guidelines recommend the use of Gabapentin - Garcia-Borreguero et al 2013 and Garcia- Borreguero et al 2012a

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Full articles - European guidelines on management of RLS report on joint tsk force by the European Federation of Neurological Societies, the European Neurological Society and European Sleep research Society - European journal of Neurology- 2012, Nov; 19,(11) 1385- 96

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The long term treatment of RLS/Willis Ekbom disease: evidence based guidelines and clinical consensus best practice guidance: a report from the international restless legs syndrome study group. Sleep medicine. 2013 Jul; 14(7): 675-84

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Gabapentin HAS been researched. National Institute of Health in the US.

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avoid benzos they are bad news is my recommendation. benzoinfo.com/

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Wow, you get it during the day and in your arms and torso. I have been there, but only when I have taken an RLS provoking substance such as Benedryl or Tagamet - an antacid. The list of drugs and supplements that can provoke RLS symptoms is quite long. People on here have complained that everything from statins to metformin to hormone replacement can trigger their RLS. And even certain supplements (melatonin, 5HTP, uridine) that increase serotonin, thus antagonizing dopamine (which is in short supply in our central nervous system), can trigger symptoms. I take ferrous bisglycinate at night on an empty stomach (never during the day) and it works for me.

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Hello Jay

Sorry to hear about your current situation. However, it sounds as though more time and effort is required on the part of your specialist in determining the correct dosage of Gabapentin to start with. Your dose can be titrated up to a recognized safe level but that brings improved control.

Also, you may benefit from additional or alternative medication if Gabapentin is not effective on its own.

This all requires of the specialist looking after you, his/her time and effort to obtain the correct drugs and dose balance. This can take some time I.e. several weeks but it is worth investing the time both for you as the patient and the specialist doctor who will ultimately require seeing you at periodic intervals.

Kind Regards

Pierre Hervé.

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gabapentin and lyrica its sister drug are addictive with serious side effects . They also destroy brain synapses. Pls research.

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Have you got any articles on human studies? I have only seen animal references re synapses. I believe that its addiction risk is generally quoted as being low in comparison to, for example, opioids .

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drugawareness.org/neurontin...

Please feel free to google lyrica and gabapentin destroy new brain synapses. These is a massive amount of info on this as well as forums . Lyrica and Neurontin are not analgesics they are anti epileptic drugs . Drs are rx them off label. Pziser were heavily fined. Reuben Scott was jailed, struck off heavily fined.

Lyrica causes Long qt syndrome and cortical myoclonus amongst other conditions. Gabapentin is its sister drug.

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The article re synapses is the one I’ve seen before...based on studies in mice.

Gabapentin, as you mentioned to me, is an epilepsy drug which as I understand dampens excitatory neuronal mechanisms . It does not claim to be a painkiller other than for neuropathic pain.

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Did you not see my references?

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Jay48 this has become a complicated post! Is this reply for me?

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Ha ha, no, academia - which is an ironic name, consider he she doesn’t appear to be very academic in the respect of not reading academic research 😂😂

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They mess with "DEVELOPING brains", academia. Meaning fetuses and young children. NOT adult.

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Have you been through all the diagnostics?

rls.org/understanding-rls/s...

I ask because dopamine agonists are considered diagnostic for RLS - in other words, if they work then you have RLS.

If you are puzzled at all , then why not get a second opinion?

ncbi.nlm.nih.gov/pmc/articl...

This article has a good section on diagnostics, as well as a paragraph on conditions which mimic RLS.

It is possible your doctor is wrong - most doctors, the vast majority, are very little trained in this condition.

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I’m not sure about your statement that if dopamine agonist work you have RLS?

They don’t work for me and I definitely have RLS.

I have been through diagnostic criteria and I tick off all symptoms for RLS.

I’m not sure what other condition closely resembles RLS, but I’m 99% certain what I’m feeling is RLS.

I see that many people with RLS don’t respond to Dopamine agonists, my symptoms got worse on them!

🙏🏼

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Yes, everything gets worse after a while as one augments on DAs, for almost all of us, at least 70% after eight years (I think they will find it is 100% after a longer period when they have the longitudinal studies) - but the first few doses usually help wonderfully. It is just very rare for DAs not to work AT ALL. And as you will see from the paper I cite, short-acting DAs like pramipexole can be used to clarify a diagnosis.

If you are one of the rare few for whom this is not true, then your first line of defence is to get your ferritin levels up really high if they are under 100 - probably with IV infusions - oral iron cannot get you high enough. (Those sufferers who have posted their successful results on this site have usually improved hugely at a ferritin level of about 350).

Then, if nothing else seems to work and the disease remains intractable and your quality of life is nil, you need opioids. But if you are in England I believe that will be difficult. I hope not, no-one can live like this.

I was one of the intractable ones - but now I have had several IV iron infusions, raised my ferritin levels up to about 250 to 300 (from 20), and I take methadone after suffering all the hells of DAs for more than a decade - But I am not in the UK.

There is a solution, but many of us here have had to fight hard for aeons to get to it. It took me many suicidal years, but I got there by doing all the research and convincing my doctor.

Spend your time researching during all those sleepless nights, get really smart, then take control. Gather good papers on all aspects of the condition, join organisations like the Restless Legs Foundation, send an e-mail to Doctor Mark Buchfuhrer of Stanford University via the rlshelp.org site. He will reply.

If the condition came on suddenly, rather than being inherited, you need to know why. The most usual for a man would be a kidney condition, not necessarily obvious.

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Hi again Jay.

Parminter does have a good point. One of the criteria for diagnosing RLS is that all other possible explanations for the symptoms have been eliminated.

IF the gabapentin doesn't work, there would be no harm in asking for a health "MOT" with some routine blood tests including FBC, renal, liver, thyroid function and hba1c. I would imagine that you would have other symptoms however, but might not have noticed them.

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I have an appointment with my GP in 3 weeks and will get another blood test, I had one over 6 months ago, my folic acid was low, and cholesterol slightly elevated (which I was surprised at my bmi is 22), my GP said my iron levels were fine, but I’m not sure whether that included ferritin? I will ask for full MOT.

I should have added earlier the dopamine agonists I took, initially worked but only for a very short period but then the symptoms got worse and I was advised to increase dose, which again worked for a short period (days) before the symptoms got worse again. I then stopped them.

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Hi Jay, a normal blood iron test, Haemaglobin will not detect Brain Iron Deficiency (BID).

Even if your ferritin level is "normal" it does not mean that it is high enough for someone suffering RLS

"Normal" levels are based on "normal" people under "normal" circumstances. I have a blood test every 6 months for another condition and am constantly told that the result is "normal" because it is within the "normal" range. This is a bit frustrating since, having had the offending organ surgically removed, it should be zero, which it isn't. I therefore need he actual result number.

If you do have the ferritn test therefore, don't accept being told simply that it's "normal" get the actual figure.

As regards the Dopamine agonist (DA). The effect of taking a DA for RLS is truly amazing if you have RLS. My personal experience is that the first night I took the lowest dose I had no RLS symptoms whatsoever.

However, DAs are known to cause "augmentation" where paradoxically the DA starts to make the RLS worse. Intuitively it seems you should therefore increase the dose. The effect of this is to make the RLS even worse. Counterintuitively, the way to deal with augmentation is to reduce or even stop taking the DA and replace it with something else e.g. Gabapentin.

I don't know when you stopped taking the DA or how fast you stopped it. It's not advisable to stop it suddenly, withdrawal symptoms can be very nasty. If you stopped recently, you may still be experiencing withdrawal symptoms and secondly, some say that the Gabapentin will not work until the DA has completely left your system.

That you had a DA and it did work initially confirms the diagnosis of RLS. You very quickly experienced augmentation. It was right to stop the DA and start Gabapentin. Again, I'd give it some weeks before deciding it isn't working, then if so, take it from there.

A useful link

rls-uk.org/augmentation-reb...

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Dopamine agonists NEVER worked for me. ever

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New knowledge, thank you. Do you know what percentage you represent?

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I have replied to many on rls treatment....leg stretches quinine in indian tonic water...one thing I can guarantee will cause rls in some people is having ANYTHING sweet before going to bed ...drinks, fruit,puddings ...ANYTHING SWEET...TRY IT.

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Ferritin levels should be the FIRST thing you look at - From Johns Hopkins... "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency. Professor Nordlander first recognized the association between iron deficiency and RLS, and reported that treatment of the iron deficiency markedly improved, if not eliminated, the RLS symptoms." hopkinsmedicine.org/neurolo...

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Hi DicC, although the statement you quote is absolutely correct so far as it goes, in the interests of balance and just in case madlegs goes ballistic reading your post, there are some rls sufferers who have very High ferritin levels (madlegs actually had hemochromatosis).

As I understand it, the apparent anomaly arises because the problem for rls sufferers is brain iron levels. For more than 50% of sufferers increasing ferritin in the body seems to have the effect of shoving iron across the blood brain barrier so that brain iron levels also rise and symptoms are alleviated. For others, however, treating with iron doesn’t have this effect and unfortunately raising ferritin levels is not an effective treatment for them.

It is nonetheless wholly correct that raising iron (in the US often done by iv transfusion), is now the first port of treatment for rls experts and we should all ensure as a primary consideration that our serum ferritin is well over 100.

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I am glad you said this, because i always tell people taking iron is not everyone's answer for RLS. That they need to know their ferritin level BEFORE taking any iron supplements as they might not need extra iron. I see in other groups for RLS people just taking iron supplements and when you tell them they should find out what their ferritin level is they have no idea what i am saying . One comment said she found out she should never take any extra iron, her doctor phoned her to tell if she was then to stop straight away, her ferritin level was very high.

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We have to be so careful about how our inidividual experience informs the suggestions we make. I suffered needlessly for years because I did not appreciate the role of iron. I am one of the lucky ones who respond to iron. Accordingly I am inclined to beat that drum loudly. I hope I always remember to tell people to check serum ferritin before embarking on supplementation. It is something I learned - from yourself and madlegs primarily - when I first joined this forum. Also to moderate expectation as it doesn’t work for everyone. I have found that disappointed Hope is a very difficult aspect of rls treatment.

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I glad it has helped you and i know it can help some other sufferers. Yes, i agree finding out that something hasnt worked for you is a big disappointment, some put all their hope on it working.

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I had iron infusions and they never helped my RLS one bit.

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You and a fairly substantial cohort of others, sadly.

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Ditto for the amitriptyline making it worse. I was prescribed a low dose for nerve damage and my legs took off running.

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Hi Jay,

Here are things I have done that have worked very well.

Things you can do easily. They may not work for you, but they've

worked for me. No harm trying . The cost is low, and the physical

downsides are zilch. Ready...

1. no alcohol, or cut down a lot

2. no caffeine, or cut down a lot

3. no artificial sweeteners

4. liquid potassium supplement 99mg (one dropper-full, in water 3x daily)

5. liquid magnesium supplement 400mg (one dropper full, in water

in the morning, before coffee, and one dropper full in water 2 hours before

bedtime). Each dropper full has around 100 mg, but it can make you a tad

nauseous so I recommend just 200 mg total per day, and maybe work up to more.

The above steps got me significant results in 3 days.

Also, if you can get it, add CBD oil to the mix.

I used it before the above mentioned recommendations, and while the CBD

oil did not help with the RLS, it really helped me with my near suicidal night

anxieties. The CBD oil I use has no THC in, so I don't get high. Just a little relaxed.

But I cannot rave enough about it's impact on my anxiety.

Good luck Jay.

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Thanks Ken

🙏🏼

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I would agree with most of what you say, but personally would never recommend anyone take potassium supplements. Normal potassium levels are maintained by the kidneys, so why take supplements. If the kidneys are not fully functioning then potasium levels will build up dangerously. If your kidneys are OK, why take potassium, if they're not, taking potassium is dangerous.

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People need to look up the "Drugs to Avoid" list. if in the UK go the UK Foundation. rls.org is the US Foundation and they will have the list, as well as all the REPUTABLE RLS sites.

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My family called rls "silly feet" and it is only in recent years I knew the proper name. Mine has been reasonably severe and eventually I went on Sifrol, dopamine agonist in Australia. After a few months 0.125mg was not enough. Increased to 0.25mg and, again, after a few months it stopped working well. This is the maximum dose for rls. In desperation I consulted a naturopath. This was last October. Within a couple weeks I was almost rls free and continue to be so unless I get a dose of food additives and even then easily controlled by a short walk. The naturopath prescribed 1000mg magnesium chelate 3 x a day and 2 capsules twice a day of Nature's Sunshine Gotu Kola which I take with midday and evening meals. I still take the Sifrol at night. I have experimented with different types and dosages of magnesium over the years. I was unaware of this herb. It is a brain and nerve tonic and not an opiate or anything like that. I have tried any number of treatments! My ferritin is very high so not that. have not had B12 tested. I cannot tell you how wonderful it is to have no symptoms at all most of the time. No pacing the floor all evening and up to 2 or 3 am. No arms going crazy. So while this might not be what you need I can only suggest you think about consulting a good naturopath. (Mine is in Bacchus Marsh, Victoria, Australia.)

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Hi I am so sorry to hear this RTLS is a horrid condition as I know only too well. Gabapentin causes depression pls see PIL and.or insert.

May I ask u how the rls was diagnosed? Did u have anyt nerve conduction tests? THanks

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Hi I had Ropinorole a while back for mine it’s ok but if I ate after taking it I felt sick , tramadol helps mine not had any bother for ages with them ! Hope u get it sorted it is an awful feeling to have I hate my rls 🙂

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Hi Jay, I see you've had 85 replies to your post, now 86. That's quite a lot.

Sorry to say that a lot of them have been off subject, some not pleasant, but intriguing.

I hope you've got something from it that has been helpful.

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Hi Jay,

I had RLS so bad I was struggling to work, and was put amitryptolin that would knock me out for two days, lyrica that sort of helped but made me so tired, lethargic and then was out on Iron infusions for another condition and my RLS disappeared completely. There is much research that shows iron infusions specifically relieve RLS. So I would inquire with your physician about this as a treatment every 3-4 months. Alternatively, there is an off-label use for a prescription called pramipexole that was a wonder for me when my iron infusions were interrupted. Pramipexole is designed for Parkinson’s but is amazing for RLS. Good luck.

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Thank you

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Ferritin levels are very important to address RLS. I don't read this much in these fora and don't know if people are tested properly for it? I was found to have normal levels albeit on the lower end of the range but my young doctor told me that for my RLS condition I was below the range required. I had by then been suffering from RLS for a few years and on the whole managed by just walking around for a while and then would go back to sleep. Then suddenly I suffered for about six weeks to a point I would only sleep at any one time for about an hour at night and may be 3-4 hours in total... So I went to see this young doctor who referred me for a blood test (I am also a vegetarian). I have to say that as I was awaiting to speak to him over the telephone for the results the GP practice contacted two days before and suggested a face-to-face appointment with a 'visiting' doctor who was in his 50s if not older. As soon as I described my condition he prescribed me one of the drugs that needs to be taken in increments before they don't work anymore. He also told me this was for life. Thankfully I had by then extensively read on fora about the conditions from other sufferers. I never bought the prescription and I am glad I insisted to keep my telephone appointment with the young doctor. He prescribed me 20 times the dose of ferritin you usually get if you buy the stuff from the pharmacy as a supplement. After 1 month the condition had dramatically decreased in intensity. It's been a year and I am still on the supplements (68mg/day) although occasionally I do take a break for a few weeks. I am still suffering from it in so far as I do wake up at night but only once. I put ice under my leg (wrapped in towel) and spray with magnesium too and I go back to sleep pretty instantly now. I hope this can help others if ferritin has not been considered properly.

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Thank you for you reply 🙏🏼 I have recently been prescribed Gabapentin 300mg three times per day. I stopped taking the daily doses very quickly (1 or two days in) and now have 600mg about 2 hours before bed. Touch wood it has been successful and I have only had 3 night RLS out of around 30 days. I think the reason I had those nights was due to taking dose too early then staying up a little later than normal (well a few hrs). My GP said my last serum ferritin levels were normal but I had another blood test today and will wait for results.

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Hi Jay. Make sure you get the actual (printed) results of your blood tests. The ferritin needs to be at least 75, but higher is often better for about 50% of people with RLS.

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I will do, thanks 🙏🏼

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