At last, a doctor who listened...After getting no response from the email I sent my neurologist, I decided I had to do something. He may be on leave or something. My GP is away until 13 March so I grabbed the first appointment with the first doctor that was available. I hit the jackpot.
The doctor who saw me was VERY brisk and no nonsense and at another time I would have been a bit, actually a lot intimidated. This morning I had all the words at my finger tips (tongue tips actually), and was able to eloquently explain in very strong and persuasive language just what I have been going through since January. Hellish legs and no sleep.
He read the letter from my neurologist in December who had said if the reboxetine didn't work, then the next thing is an opioid, he suggested fentanyl. This doctor asked a few pertinent questions and then went on to prescribe it. I couldn't believe how decisive he was.
Now my question is, what dose is usually prescribed. I was given 25 mcg patches. He felt that as I was on such a heavy dose of tramadol and gabapentin, that it was the appropriate dose. I don't know what you all think? It seems a bit high to me.
Anyway, I put it on this morning. Had a twinge of legs about an hour later and none since. I haven't really been doing any sitting down this afternoon so no telling.
I am going to drop the reboxetine as it made no difference to my legs. Any comments?
Also I want to stop the pramipexole completely while I'm 'protected' by the fentanyl. Hopefully. I am crossing fingers, toes, eyes and anything I can think of as I wait to see if it helps. I feel a bit spaced out but then, I did anyway with very little sleep.
I was on fentanyl years ago for my legs and I had not a twinge of RL. I hope the same will happen now. I will update tomorrow when I know how I get on.
Please let me know if you have any advise.
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restlessstoz
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I am so happy for you. But remain cautious, RLS treatment requires a very individual approach and many things do more harm than good. Keep informing yourself with info, listen to your body and prepare well fir each visit to your neurologist or GP.
And I agree with raffs. Fentanyl is very strong, check out the IRLSSG paper on opioids for RLS for a list that compares various opioids: ncbi.nlm.nih.gov/m/pubmed/2....
While on the fentanyl and if possible nothing else, I hope your symptoms - quelled by the fentanyl - will reduce to their ‘natural’ or ‘normal’ level. But do discuss this approach with your neurologist. Has a follow-up meeting already been scheduled?
As the others have said, Fentanyl is a seriously heavy opiate. I presume your doctor has worked out the coequivalence between the Tramadol and Fentanyl.
You may find issues of the patch not lasting the three days. This is due to the half life of the chemical. It is ok to cut the patch in three ( assuming it is the Duragesic patch) and apply a piece each day. You must be absolutely precise in the cutting.
Use sports zinc tape over the patch if it doesn't stick. I found the shoulder or top of chest were the best sites. Number them if there is a danger of confusion. There should be three "mini" patches at any one time.
All the best.
And, yes! Get off everything else while you have the chance.😎
Be aware that cutting some slow release medication is dangerous. If you cut these in half it does mean you'll only get half the total dose, but cutting it increases the speed at which It's released. There is a risk of overdose!I
I have read at least one site that states, you should not use a fentanyl patch that is cut, damaged or changed in any way. You may receive all of the drug at once instead of over 3 days.
That is why I specify Duragesic, - it is area specific and may be cut( even though the manufacturer advises against) I did it for a year, coming from 80 Fentanyl to zero . Very tough going. But the only effective way to taper down gradually enough.
A top Anesthesist concurred with my approach, but would not put it in writing.🤐
It is extremely important that users of this forum do not make any changes to their medications without discussing with their medical professional first. If you are encountering any problems with your medication you should consult the view of a medical practitioner.
Using Fentanyl seems to me like using a chainsaw when a scalpel would do just fine. IMHO, I think you'd be better off ditching all the other meds and just using 15 mg of oxycontin instead.
Just to reinforce what others are saying. I recently read that Fentanyl is a major problem in the US.
Also, from what else you say, it sounds like whoever prescribed you Fentanyl is not taking into account what other medications you are taking, which seems irresponsible to me. I also believe that you should be offered an opioid monitoring programme.
If you're in the UK, your story sounds strange, Targinact is the only opioid licensed for RLS. You are apparently lucky to get any GP in the UK to prescribe any opioid, it might actually be unlucky if they don't know what they're doing. There are other, possibly safer, alternatives to Fentanyl.
I think that opioid s can be an effective treatment for RLS for some people and if the risks are recognised. I recently read that the opioid "crises", in both US and UK are largely due to irresponsible prescribing by doctors.
I am worried that the joy of getting relief for your RLS may be blinding you to the risks of Fentanyl and in combination with other medications.
If your doctor agreed to fentanyl, which will knock out an elephant, then he will agree to methadone or oxycodone, both of which are well-understood in RLS/WED.
You should be able to drop the prami with relative ease.
In my experience a strong opioid plus prami robs you of sleep, but an opioid alone does not.
This has become somewhat complicated hasn't it. There I was thinking I'd won a battle but in reality is seems I've been diverted to a different theatre of war instead!
I hoped that last night I would sleep, in fact I was sure I would. How wrong I was! I was up more than in bed. So much for no RL. I have however, stopped the pramipexole so that is one positive and hopefully any withdrawal will no be any worse than before, with the patch... if I keep it on.
It was the neurologist who suggested the fentanyl and now I'm all at sea with doubts and confusion. Obviously he isn't as well up with RL as I would have hoped.
I am not in UK. I'm in Australia. I don't have access to any more neurologists than in my small town. Mine actually flies in each month for consultations as we didn't have a N. for many years. I don't know of any doctors of any denomination who know anything about RL.
I'm so tired I can't even think strait and am falling asleep at work. With some family crisis' happening, I don't think I can take any more.
And I am in Africa, with no specialists at all worth a damn, only my trusty GP.
I do know this, for sure (although it surprised me) - when I took pramipexole I never slept - it is a major side effect. It was suicidally miserable, I was a basket case.
When I took pramipexole with methadone I never slept - I was just cool about it.
When I took methadone alone - I dumped pramipexole in one night after about fifteen years - I slept.
So no, you are on the right road, you are just veering off a bit. Twitch the opioid, and dump the pramipexole.
Oz, I think the thing is this - the half-life of fentanyl is short, thus you need a patch in order to cover you over a longer period. This is just whoopeedoo and fabuloso, but it means you are not able to be in control AT ALL, and unable to experiment with reducing the dose as you come off pramipexole.
You can't be snipping about with scissors.
You have no agency, which I find very uncomfortable. You are having medicine done AT you, instead of WITH you.
Methadone has a long half-life, up to 60 hours, and one dose is efficacious for 24 to 28 hours.
I take liquid methadone - the sort that heroin addicts take. At the beginning I took 15mg, then the next day 10mg, then after a week 8mg.
I stayed around 7mg to 8mg for a few weeks, until I was sure the pramipexole was out of my system, then I titrated down to my present 4mg, which is a very low dose.
I could not have taken control with a patch, I would not know where I was. And with liquid and a pipette you can titrate very accurately.
I have just removed the patch. I don't know what I'm going to do now but from what I've been reading here in reply to my post, It wasn't a good thing. I just don't know where to go from here...
wait! with all due respect, I don't think there are doctors on this site speaking to you. Could you call the doctor and have a consult? Perhaps you could print out some points from an expert (Johns Hopkins/ RLS.org), and show your doctor? If you've done any reading in this forum, you know that there is no ONE answer to help everyone. I finally relented and started requip. Not for me as my feet and legs swelled and I was congested AND I had the jimmylegs all day long. ugh. It's just not well understood yet. Don't give up, keep searching. I'll do the same. What choice do we have?!
OMJL says almost exactly what I would say. We’re not doctors. And if your neurologist doesn’t seem up to date with RLS knowledge, feed him. And discuss.
As to not sleeping last night, you made a huge change in your meds, your body may need some time adjusting. And if you feel the fentanyl patch has too much, simply cut it, as others suggested before. Like you would cut pills if you thought the dosage was too high for you.
Finally, insomnia is an independent part of the RLS problem. I have a similar experience to parminter’s, I sleep well on oxycodon, but didn’t on tramadol or ropinirole.
In sum, don’t rush things. Although I can well understand you would have liked to have all your problems solved at once. Maybe tonight...? If not, enjoy at least the quiet legs.
It says not to cut the patch??? … and the 'quiet legs'. No such luck. They're just as noisy and it's those that are waking me up and keeping me awake. I get about 20 minutes sleep before they start again.
And about “not to cut”, many people do, e.g. with Neupro patch. And I did with slow release oxycodon. No problems. But maybe you shouldn’t, as the full patch still doesn’t control your symptoms. You may have changed too quickly and drastically, dropping the last pramipexole (how much were you still taking?) and the other meds all at once.
I have no wise words or good suggestions. Only that I feel for you. And usually it will get better. But hard to tell how long and what it will take. Have you thought about emailing Dr. Buchfuhrer to ask for his advice? somno@verizon.net
That's ok LotteM. I was on less than one half of 0.25 mg. I'd been shaving off a bit more so than the half tablet score so it would have been about 0.1 mg? The only other I stopped taking was the reboxetine which did nothing. I had reduced the tramadol though. and of course didn't take the Targin.
I am going to try and contact the neurologist again this morning. And thank you for Dr B's email. I may try that.
I looked back through your earlier posts. Recently your were still taking a fairly high dose of gabapentin and also of tramadol. And apparently also Targin? That seems quite a lot to me. If you now only take the fentanyl, even though it is a very potent opioid, it may still be ‘downsized’ compared to the combination of painkillers you took previously. Another discussion with your neurologist or advice from Dr. B. (who may be faster) seems wise. Meanwhile, hang it there, you will get through! And post if you need to rant, or a shoulder to cry on, or just some words from people who understand what you’re going through.
I am still taking gabapentin and 100 mg of Tramadol. So the only change is to swap Targin for Fentanyl and drop 150 mg of Tramadol. The reboxetine I didn't think would affect things much at all.
Thank you for your encouragement. It really is a help to know there are such a lot of people who do understand.
As you say... what choice do we have. I will try to find a way to actually talk to my neurologist and see what he says. I've kept links to all the papers etc so can print out or email them.
Meanwhile, doing the yo-you RL dance. To bed, to sleep, awake, up, jiggling legs, distract, legs settle, back to bed, to sleep... awake etc. etc. etc.
I second all the good advice here. DO NOT make any more sudden changes without consulting with your doctor. If you've stopped the pramipexole (and perhaps other meds, too), you are asking for serious trouble if you also eliminate the fentanyl patch. You will go through hell if you try to come off pramipexole without any strong opioid. That said, I agree with others that fentanyl is stronger than most RLS experts suggest. As Parminter said, ask your doctor about oxycodone or OxyContin, or better still, methadone. Methadone is favored by most RLS experts, as it is strong enough, but long-lasting, less chance of addiction, less of a "high", and lower side effects than the others. Please do discuss with your doctor.
Thank you. That makes sense. I guess I'm so tired and despondent it's hard to even work out what to do. I appreciate the advise. I will try not to be defeated. I'll go back to the doctor. I'll take some info. and go from there. It's all complicated by the fact that my own GP isn't even there. I could really discuss with him. However, it's a while before I can see him and I need to keep going until then. Thanks rls_optimist.
I know that may be difficult in the mind fog of rls and sleeplessness, but be aware.
Also, please view Fentanyl in perspective, compared with all the other chemicals you've been taking.
If you end up with 12.5 Fentanyl alone at the end of the day, and controlling the rls, that will not be a bad outcome.
I'm on Oxycontin10/ Oxynorm5 currently, but am actually going to suggest to my pain management team changing to Fentanyl as a better way of controlling the total opiate dose.
It is difficult for you, being bombarded with conflicting views- so, do your research, contact DrB, and make up your own mind.
Whatever you decide, plan it carefully and logically, with your doctors help.
My only success in treating RLS was going on a gluten free diet. After a week or so it worked until my hunger enticed me to get stuck into sandwiches. Now its back to no bread and first signs are good. Here’s hoping.
I too have been gluten free- now for three months. I don't know if it's helped my arthritis, but certainly I have more energy... well, before I became so sleep deprived that is! However, I don't think it's helped my RL although going of pramipexole may be skewing the whole picture. I am also dairy free and nightshade free as the latter can increase inflammation. Good luck to you.
Here we go again! I had a reply from my neurologist late yesterday asking what dose of gabapentin and tramadol was I on? That was all. Then today he sent an article: 'Augmentation of restless legs syndrome with long-term tramadol treatment';
and the words. 'Tramadol can cause augmentation too.'
That was it and although I replied asking for his advise about the tramadol I'm on, I've heard nothing since. I don't know if he's still helping me or if that's his help or what!
Anyway, I've written to Dr B. and was going to wait to hear from my neuro. and then instead of saving it, I sent it by mistake. Whoops. So now I hope that the universe or??? will take that email and let Dr B. think about it for me and give me some advise. I have no faith left that he will or my neuro will or that if I see a GP that they can do anything either.
Now to bed and to sleep and if it's like the last nights, the most I get is 20 minutes between sleeping and waking for the next bout of RL which lasts at least and hour. I know I'm feeling sorry for myself but I'm so tired, as I know you all understand; and don't know how I can carry on like this.
I'm getting head shocks from the tramadol withdrawal also. What to do????
That doesn’t sound good! Not the head shocks,the tiredness or the response from your neurologist. Although, at least he seems to be catching up with knowledge re RLS. Maybe you can feed him some more? Re your accidental email to Dr B. Have a look at what the email looks like; was it complete? If so, he will answer pretty quickly. If not, and he appears rather particular about spelling and not using abbreviations, correct it and send it again. He will come up with good advice.
Meanwhile, I hope you’re sound asleep and do not read this until your morning.
You are joking about me being asleep??? Sorry to disappoint. I'm wide awake, standing up and trying to distract. However, after 1 hour 15 minutes I may be getting to the point where my legs are settling slightly so perhaps to bed in a while.
It was complete and correctly spelt- I'm a bit of a stickler for good grammar and spelling etc. I will cross my fingers. Thanks LotteM.
He has replied!! Dr B has written back to me with his view on what can help me. He agrees that I was probably augmenting on Sifrol/pramipexole, and that now I'm off it, withdrawal may take 1 - 3 weeks.
The high dose of gabapentin is not useful as doses over 600 mg are not absorbed! and he concurs with all of the people here that fentanyl isn't a drug used to treat RLS. He suggests methadone or oxycodone in low doses.
Dr B suggests that it may be difficult for me to find a doctor who can give the appropriate treatment. With it, he believes my RLs could be bearable.
I am so grateful that he gave his time to read my email and consider my treatment. I feel as if I can start at his baseline and try to get the treatment he suggests.
It's also wonderful that everyone on the forum are so well educated about RL and he backed up what everyone is saying. I didn't have any doubts anyway, but it does show what a wonderful lot you all are and that we - the desperate, are so lucky to have you all as a resource. Thank you.
I am so happy for you! 😃 Don’t lose faith in that your life will become better. And take you request and Dr B’s reply to your neurologist to discuss. To substantiated Dr B’s knowledgeability, maybe also include a list of the papers Dr B has (co-)authored on RLS. If you have difficulty composing it,send me a pm and I’ll do it for you. Rather easy with my university access to Web of Science.
Thanks LotteM. I said the same thing to my daughter that I would make a list of all his papers. Great minds... I may take you up on your offer Thank you. Jiggling away now so not good typing as well! Yes, I do believe my life will become better. I think that Dr B has given me hope and that is priceless.
HI LotteM, I've finally seen my own GP. I took him printouts of a lot of medical papers and information on Dr B. I showed him the email from Dr B and he considered the options that Dr B. suggested. In the end, although I hadn't thought he would decide on the spot, he has prescribed 10mg Targin/oxycodone which I now have. If 10 mg doesn't help I can go to 20 mg. There are 28 tablets in the box and I have another appointment to see him on 26th so we will see how I get on.
He even said that he may do some research in case this doesn't help! He was very open the neurologists comments on Tramadol and reducing it at 50 mg per week. Also Dr B who suggested reducing the gabapentin; and see how I go. I will delete the baclofen in another week or two, as he agreed it was the right thing to do, as Dr B said is wasn't as used in the treatment of RL.
If I've been augmenting on Tramadol, maybe I'll see an improvement. If I'm still withdrawing from Sifrol, I may see an improvement in another week or so. Who knows what the gabapentin will do. Dr B. says that above 600 mg, it isn't absorbed so I've been using a lot of gabapentin to no purpose. We will see what happens. It may be that I'm just going to have to deal with life as it is now and if so, then at least I've done what I can to make life as bearable as possible.
I still have diet things to try... so life continues to be a voyage of discovery. Thank you for the support that you have given LotteM as well as all the other RL sufferers and supporters on the forum.
I feel like there is some hope now and I'm thrilled with my doctor's response and my faith in him is
It is extremely important that users of this forum do not make any changes to their medications without discussing with their medical professional first. If you are encountering any problems with your medication you should consult the view of a medical practitioner rather than strangers on a forum.
I will certainly discuss any changes with my doctor and certainly will have to, to get his approval of any changes otherwise I won't be able to access the medication I may seek. However, if I hadn't had the benefit of listening to those on the forum, I wouldn't have known anything about augmentation or other options for medication as my doctor or neurologist knows very little about treating severe restless legs. I would still be adding more pramipexole if the doctor thought that would help as he did twice before- unknowingly increasing augmentation and the hell that goes with it. As well as using a high calibre opioid which he prescribed instead of trying a far less strong one that will have better effect and less risk of addiction, that has long been used as an appropriate opioid for use in refractory restless leg syndrome by those in the field who are considered medical experts.
I am certainly aware that none - to my knowledge, of the people posting on the forum are doctors and have had others raise this issue with me- that these are non medical people, therefore their opinions are from their experience. However, they are backed up by papers written by experts in the field of RL which they suggest I, and others who come for help to the forum, read to get the facts. I do know that without the opinions and self taught knowledge of the strangers I have found on the forum, I would be a lot worse off and far less educated about my condition, from reading the papers they suggest, than if I hadn't come across the forum. I would also be without Hope and that one day I can look forward to a more bearable RL experience without the weeks and months and years of sleeplessness that I have been experiencing. .
I'm grateful for your advice and certainly I will consult my doctor, and indeed have consulted him/them first in the past and present, which is partly why I've ended up, in desperation, trying to find real answers on the forum from people with lived experience and the knowledge borne of many years of studying this debilitating condition. As soon as my doctors have the level of knowledge and experience, of strangers who contribute to the forum, who generously give their time to help others in the same boat, I will gladly approach them first and only them, to find help for the hell that my life has become with RLS.
I am passionate in my defense of the forum and those who contribute to it. I have been supported by them in the depths of despair, in the middle of the darkest night of suffering. It has been the most wonderful experience being at the end of my tether, at an ungodly hour of the morning, to call out to 'anyone out there' who can share the torture and complete isolation I'm experiencing, and be comforted by the support of a stranger with shared experience and knowledge, found on the forum.
I intend no disrespect or to offend however, I must defend that which I have found to be potentially life saving and I heed the caution about discussing with a medical practitioner.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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