I was recently referred to a neurologist for RLS, he put me on ropinirole 1.5mg which didn't work and made me sick, i reduced the dose to 0.5mg but anything higher made me sick so i was told to stop it. The neurologist has now put me on amitriptyline (tried to anyway!), i had a look through some posts and i already had a background knowledge on the drug so i wasnt happy about taking it. I asked my doctor if i could try mirapex or some other drugs such as rotigotine & gabapentin. He told me that gabapentin is no use for rls and i might as well use amitriptyline first if im wanting those drugs. I've told him im not sure and i would ring him back if i did decide i wanted to try amitriptyline. A bit of a ramble! but any advise? I don't think he will give me the drugs i wanted so is it worth trying amitriptyline?
See the list of Drugs to AVOID on the treatment page of rlshelp.org or other reputable RLS web sites. Gabapentin IS used for RLS and it is used all over the world. Also, Amitriptyline is absolutely on the "no no" list and very high up at the top of it. It was the worst RLS I EVER had when my doc tried me on this for migraine prevention way back before I knew what RLS was/is. It was the ONE time in my life, my RLS was soooo bad, suicide was an actual option. I cannot stress NO enough, and there are many stories like mine. Like you said you have been reading posts on here, and nowhere is there a positive post about it, maybe 1% and that is being generous. So in my humble opinion absolutely NOT, do not give in. It is only going to make the trial and error period longer for you. if you are in the UK, have the doctor look at the RLS-UK Foundation web site. The web site I listed covers the US, and the doctor who maintains that site is one of the top researchers in RLS and has a very active practice, written several books, and so on. Clinical Treatment of Restless Legs Syndrome , 2nd edition is the gift all my doctors got last year for Christmas. It could not make things any clearer and in the clinical sense, as from one doctor to another, and he co-authored that book with several other major researchers and MD's.
You are right, for most people with RLS amitriptyline aggravates their
symptoms more. I have pretty mild RLS and it is intermittant and when I was put amitriptyline for a year, nothing to do with RLS, I had no side effects from it but I understand this is unusual.
If you would like to take a look at the following page which is from the RLS-UK site it states that amitriptyline is one of the many drugs to avoid. Perhaps you would like to print the page out and give to your doctor and neurologist. You could point them in the direction of the FOR Professionals page to on the site too as it appears they need to know more about RLS.
I would strongly advise you to avoid amitriptyline. It will probably not help you, possibly intensify your RLS and quicken augmentation, which is not pleasant.
I took that drug along with Ropinirole for sometime and had terrible time. I have also been on Mirapex (dizziness and vomiting problems) , Rotigotine (nu pro patches) - had problems with the patches and it wasn't a solution for me. A Neuro specialist put me on Clonazepam which stopped me getting RLS when driving , sitting in Cinema - but had a heart attack recently, and that drug with the heart tabs didn't mix well.
My current Neuro Specialist prescribed Gabapentin for me along ropinerole. This combination is working well for me and the two don't interfere with my heart drugs, and vica versa.
Regarding Ropinerole, there are two types and two NHS offerings - The NHS has a generic version and has also ARdartrel and Requip (US name). The Ardartrel is what many doctors start a patient with at 0.5mg and then over a period could increase to 4mg per day.This drug is standard release, take it and it gets into your blood stream asap. The Requip is a modified tablet , that is slow release into your system to provide better tolerance and relief over the day/night. I have taken this version - 2X2mg every 12hrs and it did not work for me. I went back to 3mg of Ardartrel a day along side the Clonezepam (1mg per day).
NHS ropinerole is bog standard formulation - I think that Ardratrel is better - but now I take 2mg (0.5mg - am, and 1.5mg at night) of NHS generic Ropinerole, and the reason for that is that when I am in hospital Ropinerole is available but if you request Ardartrel or it's prescribed , then it will take time for the Pharmacy to obtain and you are left without any relief.
I think that there is a lot of confusion with Doctors over the modified and standard version of Ropinirole. and I you suggest that before you give up on it try a different version.
I am currently taking 1.5mg of Gabapetin daily with 2.0mg of Ropinirole and my quality of life has much improved. Gabapetin alone may be sufficient for you or, like me you may need both.
I decided to try Gabapetin when I noticed that my RLS diminished when taking Paracetamol - but as you can only take 8 tabs daily - that wasn't a solution for me.
If you also try Paracetamol and see some improvement in your RLS then Tramadol or Gabapetin maybe sufficient for you, either on it's own or along side Ropinirole.
No two persons have the same symptoms that exactly the same - they may be similar, but both will need a different drug solution, and therefore it's a matter of trying various drug options until you find one that your happy with.
hi, Doversoul, what is the dose of Gabapentin again? 1.5 is not a gabapentin dose in any disease. it comes in increments of 100 or 300 mgs, and the dose can go quite high, and it does not come in a dose that low. 1.5 mgs of Gabapentin does not exist. Also, please read the new warnings on Ropinerole/Requip and.or Pramipexole/Mirapex, by the Federal Drug Admin in the US. VERY strong warnings on heart damage. I only mention that because you said you had heart attack. You really need to read up on it. fda.gov
Sorry about the incorrect Gabapetin dose - I take 1X300mgs am, midday, and at night =900mg a day. I am prescribe to increase the daily dose by 300mg each week until I reach 6 tabs = 1800mg pd.
I am ok with the 900mg, no plans to increase. Tried to reduce to 600mg and I suffered bad RLS during the day/ early evening.
Gabapetin along side Ropinierole has improved my life and is the best
medicure I have ever had to help me deal with RLS, although the Gabapetin is responsible for an upset stomach and regular visits to the loo.!
I wouldn't say that it was the solution for every RLS sufferer, but could be the answer for a lot of people.
OH good, as long as you do not need to titrate up on the Gabapentin or any drug, the lowest dose possible is always the best idea.
Thank you all for the feedback!
When i talked to the doctor & mentioned the other drugs i would rather try, i feel like he just shot me down completely, he told me gabapentin was an anti-epileptic drug and would be no use to me and if i want mirapex, rotigotine ect. i might as well use amitriptyline. I'm not sure how to talk to him again about this, i've mentioned rls-uk.org to him before and he just looked at me blankly. On the phone he told me that the neurologist and himself would not prescribe me a drug if it was contraindicated... I could print him some things out but i feel like it would be a waste of time.
I'm definitely not going to take the amitriptyline, i feel like i should explore some more home remedies & take cocodamol on the really bad nights.
Furthermore, i'm only 19, in education and currently in my placement year, which is 40.5 hours a week, i can imagine trying these different drugs and continuously trying to bribe him into what i actually need will be very stressful and time consuming!
Tell that doctor that RLS is sleep related MOVEMENT disorder, so an anticonvulsants makes total sense. Your doc needs to do some reading. Drives me crazy. Tell him to look at the treatment page on rlshelp.org IT will take 5 mins out of his day. Unfortunately, it is all trial and error when you are first starting out with meds, because some are sooooo different than others. Good luck with that doctor, and with school too!
I was put on Amitrityline when I and my doctor thought I was suffering from chronic insomnia (before tests established that it was RLS). It was no help at all even when I increased the dose. On the other hand, for me, gabapentin is working reasonably well for my RLS and gives me a fair amount of sleep on its own. I get a better result combining it with 50 mg of tramadol.
That doesn't make any sense. Is this guy a real doctor? How can he say the dopamine agonists (Mirapex, rotigotine, etc.) are the same as taking an anti-depressant (amitriptyline)? The only thing they have in common is they're both likely to make your RLS symptoms worse. Gabapentin is also used to treat neuropathy pain. This can't be the first time he's heard of medications for one disorder being used to treat another disorder. Has he heard of horizant? That's an FDA approved RLS medication that's basically gabapentin! Has he heard of Lyrica? It's used a lot for fibromyalgia and is basically gabapentin dressed up for another patent. There are so few options for RSL sufferers to try... for a doctor to take any off the table should be criminal. You should try to find someone with more experience dealing with RLS. Is there a sleep specialist you can see?
Good for you for mentioning RLS-UK to your doctor even if he did not comment. He sounds pretty ignorant about RLS and not party to listening to his patient who knows much more than him about it. I really would print out the relevant page(s) and highlight the appropriate parts relevant to yourself, so that he does take notice. The neurologist appears to be ignorant regarding RLS too. There are only about 4 RLS specialist neurologists in the UK. He is definately not one of them.
The doctor and neurologist it would seem do not want to think that you being so young know more than them about a condition that you have. Knowledge is power, Amberr. You have the backing of the charity with this information.
Have you called the helpline and talked to Bev? She is great and will help you all she can. The helpline is open Mondays and Thursdays from 9:00am-11:00am. Tel No: 01634 260483, or you can email Daragh: chair@rls-uk.org who will be happy to help you too should you contact him.
I have no idea, i thought he would be more understanding.. he originally didn't want me to try any drugs, he said at such a young age the side effects could be worse than the restless legs. I thought having some background knowledge and showing that i'm willing to experience such side effects just to have a normal sleep routine would encourage him.
I'm currently studying as a veterinary nurse, so i do have some knowledge about these drugs and conditions closely related to RLS, although, i feel like he see's this as you just said kaarina , as if i don't know anything about rls or the drugs used to treat it.
Thanks for the numbers, i think when my next neurologist appointment is made i will take some printed information with me and explain to him why i refuse to take amitriptyline until i've tried better options.
Good for you Amberr, please do take printed information from a reliable source (even highlight certain sections) and how can the doctor/neurologist argue with that? Hold your head up high, you know more than these two put together, about RLS and the various options that are available. Of course we expect the medical profession to be understanding and at least to listen but sadly this does not always happen. We should be able to work as a team with the doctor/neurologist but some are very blinkered. You appear to be a very sensible person. You have done your homework well and this can only be good because we have one body and sadly we often do need to keep one step further or abreast than the medics regarding RLS. Keep refusing to take amitriptyline, so many say it makes the condition much worse, that it must be true.
Please let us know how you go on. I wish you all the best with your studying.
ANY doctor that tells you are too young needs to be quiet and go do some reading. wow, it still amazes me. Amitriptyline is NOT anything like the dopamine meds, but I think you said, Amberr, that he compared THAT to Gabapentin. Ropinerole and Mirapex are dopamine meds or Parkinson's meds. Gabapentin is an anticonvulsant, also used for nerve pain. That is nowhere NEAR what Amitriptyline is, which is tricyclic antidepressant, and it is 99.9% surely going to make your RLS worse. You will know right off the first night is the AMI is going to set off your RLS worse than it is now. That is the med that made the 4th floor window look like an "option" for me, it made my RLS sooooooo bad. Your doctor knows nothing about RLS, and precious little about meds, apparently. All of this is EASILY googled, or having been through med school, I am shocked at your doctor.. and his LACK of knowledge on simple meds.
Thanks for the help everyone, I have no idea whats going through their minds.. the being to young thing really annoyed me, he said if i was 40 he'd happily prescribe them and joked about coming back in 20 years.. i thought maybe the impact might be too much on liver/kidney but i can't see to much on that and it seems to be more about the trail & error.
I was due a neurologist appointment this month, which i was told would be booked for me as i said i could do any day any time, unfortunatly they didn't do this when i rang to check when my appointment would be.. they have no appointments until september now!!
I've been relying on very hot baths every night now, then sleeping with heat pads and occasionally compression socks.. in the morning i apply a cooling leg gel. I've just been using cocodamol on the really bad nights and forcing the boyfriend to give me leg massages! ahah
Persuaduping doctors to prescribe what we’ve researched can be a nightmare. After my 2nd time being on Amitriptyline, I made my decision to stop it. I also became intolerant of Butec patches. I asked my doctor about retrying other meds, as my intolerances have altered overtime, so wanted to retry gabapentin or pregablin, but he’s giving me a different patch, Butrem, which he says should help my neuropathic pain. Trying to find something that helps everything is proving a nightmare. I’ve currently cut back on paracetamol, as a neurologist told me not to take it regularly, as it can actually cause, rather than prevent pain. Until I get it right, I’m taking ibuprofen & CBD oil & awaiting the new patches. I also swear by volterol cream for pain.
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Also, please read the new warnings on Ropinerole/Requip and.or Pramipexole/Mirapex, by the Federal Drug Admin in the US. VERY strong warnings on heart damage. I only mention that because you said you had heart attack. You really need to read up on it. 
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