Hi everyone and Merry Christmas! This is my first post to the forum and I'm sorry it's quite a long one. I'm hoping that someone can advise me about a change of medication. I've had RLS since a teenager (now in my 50s). I augmented on Pramipexole about 5 years ago and went through hell to stop. I tried Pregablin which didn't suit me and I'm now on 300mg Gapapentin, 50mg Tramadol and 10mg Amitriptyline nightly. I also take 2 x 30/500 Co-codamol before bedtime but this wears off quickly and I know it's not a good idea to take the co-codamol. I know I need a drug holiday or to change my meds around but my GP hasn't a clue (and relies on me for a steer). I'm wondering if I should increase either the Gabapentin or the Tramadol since I'm on fairly low doses. I don't think the Tramadol made much difference when it was introduced but I know it won't be that easy to stop it. I hate the idea of increasing anything but I still have to work at a desk job 9-5 and as everyone here knows it's incredibly hard when you only occasionally get at least 6 hours sleep. If it wasn't for the great advice provided by this forum, I would have increased my pramipexole by a factor of 5 (on the advice of a Neurologist that I waited 2 years to see)! I'm wondering if I should increase the gaba and wean off the Tramadol? Would appreciate any advice at all.
No support from GP - need to change meds - Restless Legs Syn...
No support from GP - need to change meds
Amitriptyline will make your restless legs worse. The best antidepressant for RLS isWellbutrin(Bupropion). Have you had your ferritin checked? 300 mg gabapentin is a very low dose. I would try increasing it by 100 mg every 3 days until you get to a dose that works. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Guidance on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily" By the way if you are not familiar with the Mayo Clinic Updated Guidance on RLS you should definitely check it out. And I would refer your doctor to it.
Hi Sue, thank you for your comments. I tried to get my GP to prescribe Wellbutrin last year rather than Sertraline but unfortunately it's not licenced for depression in the UK. I asked to be switched to Trazodone as I'd read it was also RLS friendly but it made me really ill and I had to abandon it. I'm on the lowest dose of Sertraline and can't manage without it. I also take iron bisglycinate every other day and have my levels checked (but I'll need to get these updated because I'm not sure what they are at the moment). Iron infusions are also something that is most likely out of the question in the UK.
I take your point about increasing the gabapentin every 3 days to get to a level that works. Should I stay on the Tramadol as well? I seem to be quite sensitive to any medications and I'm worried that increasing the Gabapentin will result in more dizziness and other side effects. It seems with RLS that there are only hard choices!
I saw the recent post about the Mayo Clinic updated guidance and I'm going to print off a copy for my GP.
Thanks again. I really appreciate your advice.
I have had an iron fusion in the UK twice, the second time my ferritin was down to 8. The infusion made a huge difference, but that was a year ago . My last blood ferritin test was in the 60's range, but the Haematologist refused. I am going for a blood test today band hoping it is low enough as my RLS is returning rapidly. I take Cocodamol and Clonazepam at the moment and until recently it worked quite well. I , too, am on Sertraline(100)
I really hope you can get some informed help.
Kind regards
Nonnie
Thank you so much for your post. My neurologist prescribed clonazepam at one stage but I was worried about the long half life and because I had lost faith in their advice I didn't try it. If you don't mind me asking, how much do you take and long was it effective? Good to know that you have had iron infusions in the UK.
So sorry for late reply. I went upstairs to check on my dose and somehow got distracted. My tablets are 500mcg. I am to take one, half hour before sleep time, and if I am still awake half an hour later take another one.
I take 1.75 and find that sees me through as a rule.
I also take two of the higher dosed Cocodamol, but I take these four times a day for pain anyway.
I have to say I am very very slow to come round in the morning, so I suppose that is due to the long half-life. Please could you tell me what the half life is, please, for Clonazepam.
Of course, it doesn't help day/evening RLS.
Nice to talk to you and wishing you a calm New Year.
Thank you for your reply. That is the same dosage prescribed to me. It looks like the half life is around 30-40 hours which means it takes 1-2 days for half of it to leave your system. Going on your experience it sounds like it would make it difficult for me in the mornings. Happy New Year to you too. Good to talk.
I was just saying to my husband that Clonazepam wouldn't be any good for anyone that works. No wonder I can happily sleep for hours in the afternoon if I dare let myself.
Many thanks.
The dizziness and double vision on gabapentin will eventually settle. I found that after 2 or 3 months all the side effects did settle.
So true about the amitriptyline making it worse!
I have RLS and have been prescribed NEUPRO patches which I apply every night. I think they help although I still have some hellish nights but not as many as before.
As Nightraven sufferered bad augmentation and withdrawal from Pramipexole, all other dopamine agonists should be avoided as they will quickly cause augmentation again. The Neupro patch is a dopamine agonist.
Hope you don't mind me saying this, but I note you were on pramipexole before the Neupro patch. If you're still having hellish nights that indicates the dopamine agonists have failed and you're suffering augmentation of symptoms, where the D1 receptors are over stimulated and screaming out for a dopamine hit. Until you get off DAs, the RLS will remain severe and become even more severe. Read all you can about augmentation, ensure your serum ferritin is above 250 and that you're not on meds that worsen RLS like anti histamines, cough and cold meds, anti depressants, statins, anti nausea meds, PPI meds etc.Dopamine agonists are no longer first line treatment because of the very high risk of augmentation of symptoms and there are other meds you could be prescribed like pregabalin or low dose opioids. Several experts have made videos to make sure the message about augmentation gets out to the medical profession.
I really don't think it does much as if I forget to take it there are no ill effects.
I suggest you ask your GP to increase the gabapentin to 900mg initially. If that doesn't help, 1200mg is the average dose. Take 300mg at 9pm and 600mg before bed.Tramadol also causes augmentation ( the only opioid to do so) so ask for a small dose of codeine or oxycodone instead.
Amitriptyline and sertraline worsen RLS so it will be a balancing Act. If your RLS is unbearable, can you switch to an anti anxiety drug instead? Diazepam and clonazepam are RLS safe.
Iron infusions are available in the UK. I've had one. You should write to your local hospital haematology department and attach articles to prove your case.
I've added links below.
kumel.medlib.dsmc.or.kr/bit...
karger.com/Article/FullText...
cks.nice.org.uk/topics/rest...
Thank you for the good advice about Gabapentin and the links re iron infusions. I will definitely pursue this. It's not easy getting a call back from a GP these days but we have to keep trying. Last set of blood test results did not include serum ferritin that I had requested. It's an uphill battle all the way.
Hello like you I to started as a child with RLS long before it was known about and am now in my 70s over the years exercise and Iron tablets have kept it at bay except when as a student nurse on night duty it was very bad about 3am in those days they called it 'Night nurses paralysis'. Last year I had a Whipple's operation for cancer with most of my digestive system removed I did not eat or drink for 6 months ( fed through a tube into my small intestine) and my RSL got very bad all over my body after they stopped the post op opiates which I had for 6 weeks. My Ferritin levels dropped below 35 and the RSL was continuous night and day. I then tried pramipexole which made it so much worse and it took 3 months to stopped them I also then tried pregabalin which very soon made things worse. Exhausted I decided to go cold turkey and look after myself.by this time I was able to walk 2-3 miles a day and have a diet of low sugar and carbs virtually veg in the form of home made veg soups and veg with chicken I also had 3 Iron tablets a day taken before rising with a high vitamin C it has taken a year for this to work but now I have RLS for about 4 minutes twice a week at night. The neurologist I eventually saw did not have a clue and just suggested trying stronger drugs. All I can say is coming off the prescribed medication was hell and took 3 months but self help has worked for me as my Ferritin levels are now well over 400 and I walk at least 8 miles per week in the country lanes and stick to the low carb low sugar diet. I think self help for me was the only way forward. I do wish you luck
Thanks for your post. I am sorry to hear you have been through so much on top of the RLS. It is really encouraging that you have been able to manage through diet and lifestyle. I believe that diet is definitely a factor and I am avoiding sugar as much as possible. Like others I find that icecream often makes it worse. I have also noticed that when I am getting more exercise and have less stress it helps too. Take care and good luck for the future.
PS I meant to ask what type of iron you used to raise your levels so successfully!
Hi I take Ferrous Fumarate 210mgs x3 tablets with Eff Vitamin C 1000 every morning when I wake and at least 1/2 an hour before I eat. I believe taking high dose Vit C and before any food on a really empty stomach is what raises the Iron levels for me.
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