severe jerking after taking nortriptyline ( Allegron)

[Mason21]

Hi Everyone, first of all I would like to say, thank you so much for sharing your personal experiences with RLS and your in depth knowledge with medication and other intervention to whom those sufferersvof RLS are very very benificial including myself. I have been suffering from this disease for almost 20 years and just like most of you tried every available treatement I have heard here in Australia where I live but still no success. I just finish withdrawing from Sifrol ( pramixole) and eventhough I was in .125mg for 6 years still like most of you suffered from augmentation which lead me to take gabapentin which did not help me completely after I tried titrating the dosage andvwent back to same dose with the sifrol on top of 300mg of gabapentin for almost 3 years which gave me a reasonable sleep occasionaly but then the RLS started creeping back again and now my neurologist recommended ne to a Pain Doctor who gave me Buprenorphine patch 2.5mg to trial for 3 weeks along side with Nortriptyline 5mg a night. first 2 nights I started jerking before I went to sleep and the jerking disappeared and had good sleep. but the second week the jerking came back and this time it is very severe the whole night tobthe point that It is almost impossible for me to fall a sleep or even to maintain sleeping. to cut my story short I am back to the same situation again. Yes, the buprenorphine is fantastic, almost zero RLS but the jerkingvis as bad as the RLS before. I am about to see my Pain Doctor in 5 days time. May I please ask any one if you have any experience like this with the above medication? I am still taking 300mg of gabapentine. I need help please, what should I do? any idea please. thank you

[LotteM]

Sorry about the jerking. I hope the lack of urge to move remains. Why were you (also) prescribed nortriptyline, as it is known to worsen RLS for many?

Also, be aware that often buprenorphine patches do not last the full week. And what is your dose? 2.5mg in a week? As usually dose are given in mcg/h (microgram per hour). Mine is 5 mcg/h, the lowest available dose as far as I know.

[Mason21 in reply to LotteM]

hi LotteM, thank you so much for a very kind reply. The Pain Specialist said that I need to take Notriptyline to slow down that possible resistant that I may develop with buprenorphine. I was doubtingvthis drug already when he prescribed it to me, but unfortunately he is not willing or even open to any ideas even from his own patient. The patch I am using comes with 5mg each and he said I can only use 2.5mg so I have to cut the patch in half which is a bit annoying because the edge where I cut it will not stick to my skin, so I have to re-inforced it with extra adhesive to ensure that that side will adhere to my skin.

[LotteM in reply to Mason21]

Mason, I have been taking buprenorphine daily for more than three years - and hope to continue to do so for a long time. I never heard of the jeed to tale nortrittline with buprenorphine. Not have I seen anyone else on this forum who takes buprenorphine - and meanwhile there are many - that they were prescribed nortriptyline for this reason.

Is there a possibility that your doctor confused it with nalexone? That is an anti-opioid medication, used in O.D. situations and is sometimes added in an opioid medication to help with constipation and the help prevent taling the opioid for euphoric effects. Buprenorphine is combined with naloxone in several specific medications (e.g. Suboxone, Zubsolv). For RLS, we only need (very) low doses and there is no need to combine it with naloxone.

Your 2.5mg is a relatively high dose. I got by on 0.2mg sublingual pills, for many 0.4mg suffices. Generally people need up to 1mg. Although in the US average doses seem to be a bit higher. See the Mayo Clinic Proceedings (?) and certainly the results of dr Winkelman’s opioid registry.

[Mason21 in reply to LotteM]

Thank you LotteM. My patch is rated at 5mg but it only delivers 5 micrograms per hour. As I only apply a half patch at a time I am only receiving 2.5 micrograms per hour. So far for me thankfully it is lasting for the full 7 days. Thank you for the information about nortriptyline. My experience was terrible. Last night my jerking disappeared in the middle of the night and being two days since I last took nortriptyline I am hoping its effects are gone now. Thank you for your reply.

[SueJohnson]

As LotteM said, nortriptyline makes RLS worse and is probably the cause of your jerking. If you are taking it for depression ask for Wellbutrin. (Zyban , Contrave).

[SueJohnson]

Since you have the buprenorphine patch and it is controlling your RLS you can finally come off the sifrol. Reduce by 1/2 the .125 mg every 2 weeks.

By the way gabapentin doesn't help much while you are on sifrol. After you are off sifrol for several weeks you can continue the buprenorphine and stop the gabapentin as you won't need it. You need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.

If you don't want to continue with the buprenorphine patch and instead go with gabapentin, you will need to withdraw from it very slowly too. Increase your gabapentin by 100 mg every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason . Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Mason21 in reply to SueJohnson]

Hi Sue, thank you so much for a very informative and detailed instructions. Finally, It make sense now why the gabapentin did not work for me the first time I trialed almost 3 years ago, so I can get off Sifrol, because, obviously the instruction that was given to me was WRONG! I cannot stop thanking God enough and everyone of you in this forum who has been sharing wealth of knowledge and experience where everyone feel comfortable and safe from the information we are getting. and not to mention a place where, you can vent your frustration and suffering without being judge or ignored but can expect sympathy, support and understanding. Thank you for suggesting some anti-deppressant which hopefully the Pain specialist will consider. Thank you for mentioning the two option regarding gabapentine and buprenorphine, at this stage I am happy enough to continue with patch since at this stage it is been wirking well to control RLS and hoping the jerking will slowly disappeared after I get rid of notreptyline. I am looking forward to slowly tapering once the pain doctor will is happy for me to do so. I just had my TSAt result and ferritin last month and according to the neurologist it is all above normal. I am currently taking 200mg of maynesium daily. again thank you so much Sue your help is very much appreciated.

[SueJohnson in reply to Mason21]

Do ask for your ferritin number because what is normal or even above normal for others is not normal for those of us with RLS.

By the way looking back at my answer I said Reduce by 1.2 the ,125 mg every 2 weeks. That was supposed to be reduce by 1/2 the .125. I will correct my reply

[Mason21 in reply to SueJohnson]

Thank you Sue. Just to clarify, my pain specialist said that I should take nortriptyline to help lessen the chance of the buprenorphine becoming less effective over time. Is this correct? As I already mentioned in my previous post that I suffered terrible jerking all night for five nights while taking nortriptyline and which have persisted for one and a half nights since I stopped taking it. I hope its effect is finished now. Also, is it usual to take another drug with buprenorphine to help slow down the onset of becoming resistant to it? If so, what are the best drugs for this? I will send you my iron studies result as soon as I get them off my doctor.

[SueJohnson in reply to Mason21]

As others have said nortriptyline is not used to lessen the chance of the buprenorphine becoming less effective over time. And buprenorphine does NOT become less effective over time. It is common to need to adjust your dose in the first year but after that you shouldn't need to increase it.

[Sandalsforever]

I’m not sure if it’s different in Australia, but my husband‘s doctor in the states said you cannot cut a buprenorphine patch because the way it is made - different than most other patches. You will not get an even half dose from cutting it in half. It’s worth looking into by asking the manufacturer directly.

The patch really help my husband especially in the last stages of getting off ropinerole, he had to increase the dose at the very end, but has had very little rls if any in the process.

[SueJohnson in reply to Sandalsforever]

Your husband's doctor is wrong. You can cut it and many people on this forum do so.

[Sandalsforever in reply to SueJohnson]

Interesting… will need to bring it up to him. That would be a great help cutting it up and save money too.

[Mason21 in reply to Sandalsforever]

Thank you Sandalsforever for your reply. It is helpful for me to know that I am not alone in this battle. Take care.