Firstly I appreciate this group and the willingness of everyone to help. It is much appreciated. I have a question about insomnia. I came off pramipexole and eventually settled on Tramadol for 6 months , after which tolerance/augmentation started and the Tramadol was no longer effective. While I was on Tramadol I experienced strong heart palpitations and insomnia every night. I averaged 4 or 5 hours sleep each night. I then came off Tramadol and went on to Kratom. I have experimented with different doses and now after 7 weeks I am on just 8g at night and none during the day. The problem is I am experiencing even worse heart palpitations and Insomnia. I am so worn out from lack of sleep. I feel ill on a daily basis. The heart palpitations seems to 'wind me up' and the exhaustion depletes me at the same time - its very trying. From what I read online, Kratom is similar to Opiates and I am one of the few who get palpitations and Insomnia from both. I saw 2 doctors recently, both admitted ignorance, refused buprenorphine, and prescribed meds (one of which was amitriptyline) which made the rls worse. I am hoping to see another Doctor soon about Buprenorphine but I am worried that because its another opiate I may experience the same palpitations and Insomnia with that too? I dread going back on pramipexole so my only option seems to be an opiate. The question I have is this, what can I do about the Insomnia and palpitations? I will need a regular sleeping tablet or something? Does anyone know if there are 'safe' sleeping tablets to take for Insomnia? I am so worn out from lack of sleep to the point I question whether I can continue working.
Insomnia: Firstly I appreciate this... - Restless Legs Syn...
Insomnia
Ambien and Ativan are both good for insomnia and safe for RLS.
Zolpidem is ambien in the UK. I would recommend it first since it is has fewer side effects and less potential for addiction.
Thank you Sue - I will ask my Doctor for that.
Sue I checked the NHS website and they say it will only be prescribed for a short period as it is addictive. That is what I fear - I worry they will not give me a sleeping tablet permanently.
"Ambien a nonbenzodiazepine is typically a first-choice option for treating insomnia because it usually causes fewer side effects than other drugs and without the potential for abuse or addiction - also less likely to be habit forming" per Mayo Clinic. Unfortunately the for short term use is what is normally said, but remind your doctor that sleep is very important to you.
Ok thanks will do.
Ativan=lorazepam: 'for sleep problems take 1mg to 2mg before bedtime (lorazepam will start to work in around 20 to 30 minutes)'.
But, the NHS says, "It's not recommended to use lorazepam for longer than 4 weeks" so you may again face difficulty getting it prescribed for long term use.
Thanks Chris - I will make a note of that one too.
Opioids cause wakefulness/alerting for many people and heart palpitations. Why do GPs appear so lacking in basic knowledge? They should also know that most anti depressants, including Amitriptyline, worsen RLS. I find it very worrying.ncbi.nlm.nih.gov/pmc/articl...
I am on Buprenorphine and experienced heart palpitations which settled down only to become much worse after a Covid infection.
I've had an ECG and a 24 hour halter and an ultrasound of the heart and all came back 'normal'.
If tramadol and kratom cause wakefulness and heart palpitations, it's highly likely Buprenorphine will do the same.
You can counter the insomnia and heart palpitations by adding a small dose of pregabalin or gabapentin. They are sedating meds so will help with insomnia. I also take a non sedating anti histamine ( cetirizine) as it also helps palpitations. I find the pregabalin also reduces the spikes and frequency of palpitations.
Ask for a 24 hour heart monitor test ( my GP surgery has all the necessary facilities to do this) and also ask for a small dose of pregabalin to counter the insomnia.
If you do want to try Buprenorphine and stop the kratom, you may have to see a neurologist who will then advise your GP to prescribe it.
Refer your GP to the RLSUK medications table, the Mayo algorithm and the Massachussetts Opioid study. They need to learn the basics of RLS.
Good luck at your appointment.
mayoclinicproceedings.org/a...
Thank you - that helps. I have noted what you said. The Doctor I spoke to recently said he would have to refer to me to the pain clinic if I wanted Buprenorphine. My Doctor who has walked with me through this for 20 years returns from leave this week so I will see him and ask him to refer me. I have popped an antihistamine and will see how that works. I asked this week for a small dose of gabapentin from the Doctor as I recalled it helped with anxiety. Interestingly, it triggered rls when I took it - just as the amitriptyline did. I imagine they are reacting with the Kratom and possible the Kratom is not the best for my body? Also of interest in my iron blood test was a high spike in my 'Eosinophils' level. It concerned the Doctor I saw and he is seeking advise from Hematology. Google said a high spike can indicate a serious infection such as asthma or excema (i dont have these) reaction to a medication. I wonder if my body is reacting to the Kratom - hence the serious heart palpitations, nausea and feeling ill? Maybe it is not the best for me?
Make sure any anti histamine is the non sedating type. Cetirizine, loratedine are safe options.
Interesting about gabapentin. It doesn't usually trigger RLS so you could be correct in assuming it's an interaction with kratom. Pregabalin or gabapentin are now first line treatment if raising serum ferritin doesn't resolve RLS. They are both sedating meds and would probably be better for you than another opioid. If you do try buprenorphine, I suspect it would also cause insomnia and you would have to add a small dose of pregabalin.
I'm not a big fan of kratom because so many people seem to build up tolerance quickly and have to increase the dose. I would only ever suggest it as a last resort to someone desperate for help during dopamine agonist withdrawal. As it's illegal here in the UK, that's another reason to use it only for short term emergencies.
The Eosinophils could well be your body responding to the kratom, It can be caused by the body responding to many drugs, including amitryptiline and kratom and maybe the haemotologist will advise.
Hopefully, when your regular GP returns, you can ask about buprenorphine again. GPs are allowed to prescribe it, but many do not want to do so 'off licence' in case anything goes wrong. Gabapentin and pregabalin are also 'off licence' drugs with the same issues so I don't understand why GPs will prescribe pregabalin but not low dose buprenorhine. I suspect it's misunderstanding about opioid 'addiction'. If GPs would read studies, they would realise opioids for RLS do not lead to tolerance and addiction in the same way as for pain.The vast majority of RLS patients stay on the same low dose for decades. The Massachussets Opioid study confirms this.
I hope you can find a combination of meds that works for you.
Thanks - that all makes sense. When I tried Gabapentin I recall it was very helpful for sleep and anxiety at first. Unfortunately I could not get it to work for rls. I tried for 6 months increasing the dose. I discovered I was unable to take more than 1200mg as I got really ill every time I got to that level. And it did not help at all with rls. I wish it did. So opiates seem to be the only option for me - or back on pramipexole and alternate with Codeine whenever i experience augmentation which was always every 2 months.
Never go back on Pramipexole or another DA. Your D1 dopamine receptors are probably damaged from decades of use and the augmentation will happen again very quickly.As mentioned in my previous reply, gabapentin and pregabalin will NOT work while you're on dopamine agonists. The D1 receptors are too over stimulated.
They may work very well for you now you're off Pramipexole. Pregabalin has slightly different side effects so you may find it is better for you than gabapentin.
So. If you can't get Buprenorphine and opioids cause insomnia for you, then do comsider pregabalin.
Often a combination of 2 meds at lower dose works better than one at a higher dose.
Adding pregabalin (up to, say 100) can be very effective with a low dose opioid like codeine, or oxycontin .
I take 25mg pregabalin with 0.4mg Buprenorphine. The pregabalin stops my opioid induced anxiety and panic attacks.
Good luck.
Thank you Jools. I appreciate that reply. It makes sense - maybe now that I have been off pramipexole for a year, the Pregabalin may work?? That may be worth a shot. And the combo idea sound sensible too. One question - which is stronger, Oxycontin or Tramadol? Which is better for the combo? Could I use Tramadol?
Tramadol also causes augmentation so in my experience, best avoided. Oxycontin is stronger than tramadol. However, it often doesn't last the 12 hour's it's supposed to cover, so you may have to take every 6 hours in smaller amounts.With RLS, we all react differently to drugs so it is a case of trial and error.
Morning and thanks for clarifying that. I was really interested in your Opiate and Gabapentin/Pregabalin combo idea so last night I tried it. I took 300mg Gabapentin and 100mg Tramadol - no Kratom. What a difference. The Gabapentin calmed the heart palpitations right down and sedated me enough that I slept the whole night with just 1 episode of wakefulness in the night. What a difference. So maybe I wont need sleeping tablets if I did something like this? It makes me wonder if Pregabalin would do the same. When my Doctor is back in the next day or so I will speak to him about a Buprenorphine and Pregabalin/Gabapentin combo. I am also curious if Gabapentin may work now that my brain has recovered from the Pramipexole? Although personally I am leaning towards an Opiate combo - especially if Buprenorphine doesn't cause augmentation. I feel much better this morning - I don't feel ill.
Pregabalin is better absorbed and can be taken in one dose, so might be better.You could definitely try just Pregabalin alone now that you're through withdrawal.
Many people do very well on 2 meds at smaller doses.
As Joolsg mentioned, although you were sick on gabapentin if you took it above 1200 mg and it didn't work, You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The starting dose is 75 mg. Wait 3 weeks and then increase by 25 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS, most patients need 200 to 300 mg (equivalent to 1200 - 1800 mg gabapentin) If you take magnesium don't take it within 3 hours of the pregabalin as it reduces the absorption of the pregabalin. If you try this and it doesn't work, come off it very slowly or you will have withdrawal effects. If you do it slowly enough you won't have any. I just noticed you said you tried pregabalin. If you didn't have the same side effect you might not have taken enough. 450 mg is the maximum dose.
Hi sue. Thanks for your reply. I tried pregabalin - although I cant remember the details - but it didn't help the rls so I came off it. I did not experience any side effects while on it - so that is interesting. I have noted what you said about it and the dosage. Jools mentioned that since I have been off the Pramipexole now for a year - my brain may have recovered and the Gabapentin/Pregabalin may work which is very interesting to me. Jools also mentioned a combo of Opiate and a Gabapentin/Pregabalin dose to offset the palpitations may work. I tried this last night - I took 300mg Gabapentin and 100mg Tramadol and it worked - the heart palpitations settled right down and I slept the whole night with just 1 episode of wakefulness. So that was really interesting. It may be that the gabapentin or pregabalin may sedate enough that I dont need a sleeping tablet? So my options may be another trial of Gabapentin (in case my brain has recovered) or an Opiate and Gabapentin/Pregabalin combo. I will still speak to my doctor about Buprenorphine. I do feel quite dizzy on the Gabapentin. Thanks again for your welp - this group is so helpful.
I feel for you. It's tough trying to work when so sleep deprived. Have you tried pregabalin or gabapentin? I was initially on pramipexole for a couple of years and transitioned to pregabalin which has worked well in the main. The side effects are far from ideal but at least I'm getting sleep.
Thanks for your reply. I was on pramipexole for 20 years - 20 horrible years and tried gabapentin and pregabalin. Neither did anything for my rls. They were both pretty ineffective. Only opiates work really well with me. But as you say they all have side effects. I am really glad pregabalin works for you - that is so good. Much less addictive than opiates I reckon so a big plus for you.
Just to add- pregabalin and gabapentin do not work while you're still on pramipexole. They only take effect about a month after the last dose of dopamine agonist.
I checked - I took Pregabalin straight after stopping Pramipexole. Maybe thats why it didnt work. I took Gabapentin 6 months after stopping Pramipexole and tried it for 4 months without success.
what side effect do you have with oregabalin. I tried Gabapentin and it was a disaster- didn’t help the RLS, felt like a zombie the entire 3 months I took it and got severely depressed. I gain 20 pound in those 3 month and it took a year to get it off and recover from the depression. Don’t want any of those side effects again.
I can't recall what side effects I had with Pregabalin - I stopped it because it didn't help the rls. I seem to recall Gabapentin helped with the anxiety - It made me calm. However it did nothing for the rls. Sorry to hear about your trial - I think all the meds we take have potential to be great or terrible! Mostly terrible I think. IOt is tough. Hope you are over the depression now.
Excessive daytime fatigue, reduced cognitive functioning, some memory problems and a mild flattening of mood. But everyone responds so differently to medication that it's not really until you've tried it that you know it's effects.
Had all of those big time. After three months without improvement in the side effect, I wasn’t going to be to continue working, so I stopped it. I didn’t find it helped the RLSenough to tolerate the side effects. Pregabalin created severe nausea and vomiting . After loosing 8 pounds I couldn’t afford to loose, my doctor pulled me off of it. Side effect profile was about the same for me. Trying iron supplementation.
Almost any medication will produce side effects. Some more severe than others.
It can be a question of staying with one medication for at least 6 weeks to allow the body to adjust.
That is what happened to me with tramadol and then Oxycontin. But i knew ,at that time, I had no further road, so stuck it out.
Ive now been on Oxy for about 7 years, with no further effects, unless the deterioration of my teeth is a factor?? But I'm 76 yrs oooold, and it may just be "age related" 😆
So- I would say, stay with a med for a while, before changing.
All the very best.
Thank you I will remember that. I am curious about your experience with Oxycontin? Have you not experienced tolerance or augmentation in the 7 years? What was your experience with Tramadol and why did you come off it?
No augmentation with Oxycontin. 3% possibility with Tramadol.Tolerance can be an issue, but generally not at the low doses given for RlS. 20 to 30 mg pd.
On Tramadol I had insomnia, itching for 3 weeks, before asking for something else. I was given Oxycontin, and had the same reaction, but knew that eas my last chance.
So I stuck it out, and after 3 weeks it all settled down.
The only issues I had was Oxycontin doesn't last the full 12 hrs for some people (me) so I was able to get oxynorm 5mg to fill the gap.
I've been on this for about 7 years, and am on the Michigan trial along with our esteemed associate, Jools😍 , into 41/2 years now for that trial.
Good luck with your journey.
Ok that is very interesting. So do you take Oxycontin only at night? How did you know to get oxynorm? I have never heard of that? Have you tried Buprenorphine? I appreciate these discussions.
I take Oxycontin 10 at lunch time and at 10pm. And then oxynorm 5mg at 7am. Total of 25mg of opioid per day. Occasionally, if I have taken a trigger, such as msg, I take 250mg of Acetaminophen/ paracetamol to boost the opioid.
Bupren wasn't really around at that time except as a patch, and people were having problems about that not lasting the week. I had bad similar experience with Fentanyl, so didn't want to go down that route.
As I've said, the Oxycontin is going well for me, so I'll stay put.😎
Glad to hear you have a workable solution. Thats great news. And thanks for sharing how you use the meds.
Did predictive text substitute aspartame for aspirin above?
Thanks for pointing out that, Chris.
Can't blame predictive text for once. Just an utter brain f*rt.🥵
Keep up the proofreading!😎
Lack of proper sleep is awful. All of these opioids are addictive. Why can we not become addicted to sleeping pills? I take one every night and sleep for 8 hours.
Sleeping pills such as Ambien (Zolpidem) are not technically addictive, the problem is tolerance and withdrawal. With overuse (which can happen in weeks) they lose effectiveness and cause rebound insomnia.
Opioids are NOT necessarily addictive.Please read the article I posted recently addressing this very misconception.
At the low doses that RlS sufferers are on , there is very low danger of addiction arising
Unless, of course, one is of addictive personality -- in which case all bets are off.😆
Sleeping pills are far more addictive and should only be used for a few days / nights, and certainly not more than a fortnight.
Cheers.
I suffer really badly with insomnia, there are nights I don’t sleep at all and I am up for 36 hours which causes me to feel sick, it’s like jet lag. I take phenergan which is an antihistamine. That helps to knock me out. You can buy it in the uk but I told my doctor (who wasn’t aware of it, it was actually a nurse at hospital that told me about it), and I get it prescribed now. I also take pregabalin & quinine. Hope this helps
I have noted that and will get some thank you!
Phenergan is a sedating antihistamine which makes RLS worse for most. He is lucky it doesn't happen to him. By the way I tried Ambien last night after only sleeping for 4 hours on Sunday and not at all Monday night. This was not for RLS. But boy did I sleep well last night.
I share your feelings about insomnia - its absolutely awful. What medication are you on that causes it?
You're lucky with the phenergan. Since it is a sedating antihistamine it makes RLS worse for most people.
oh really? I find it helps mine. I don’t take it every night tho. Only when I have had a a bad bout of insomnia and my legs are aching and I need a sleep. It’s amazing how medication affects people differently.
Yes it is.
Just to add that I experienced insomnia with codeine but not with tramadol or morphine.So it is not inevitable that you will get it with buprenorphine.Huge good luck.
I am very similar. Augmented on Pramaprexol after 16 years, which controlled my RLS perfectly until the end.
I tried Gabapentin and then Pregabalin for a few months, but they did little. I finally got Tramadol. Like you, I experienced insomnia even though RLS was controlled. I finally added medical Marijuana (Indica tincture 0.5 to 1 ml dropper) and it works great putting me to sleep. I just hope I don't augment on Tramadol in the future.
Good luck - looks like you have many options to try.
Ok - very similar to me. A few people have mentioned medical marijuana - do you get that through your doctor?
Yes, I live in Florida and it is a simple process to get a medical Marijuana card.
Ok. I have no idea how it works here in the UK. I will check...
lyphe.com/I use this clinic for medical cannabis. Ask for the 'pain' clinic, even if you don't get pain with RLS, as the formulae for pain work well for RLS.
My doctor has now left, but pretty sure they'll allocate you a good doctor.
It works out around £2.50 a day.
The Althea Champlain Oil with 20% THC is good for sleep.
That looks amazing. Thank you - I had no idea that even existed.
As I have MS as well as RLS, I knew about the benefits of cannabis for MS pain and spasms so as soon as it was legalised in 2019, I signed up for alerts.There are lots of private cannabis clinics now and they will treat insomnia.
I don't know where you are in the UK, but If it is feasible, I would try to find a neurologist associated with a medical school who also accepts patients. A neurologist who specializes in sleep disorders would be my first choice. At least the neurologists in the U.S. who specialize in sleep disorders usually include RLS in that category. It seems to me that you really do need a doctor who can help you with both the RLS and insomnia.
Thanks for your message. I went to one neurologist here and they were totally unhelpful. I might see if there are any sleep specialist. Thanks for replying.
hi Gary,
I take Magnesium Citrate, Spatone Iron supplement with vitamin C. and 600-900mg of Gabapentin and it’s dramatically improved the quality of my life.
I take all of it right before I go to sleep. The iron supplement is a funny one because my ferritin levels are normal, however my doctor said that my ferritin levels could be normal but I could still have low iron levels in the brain. So supplementation can encourage further uptake in the brain, so since including iron and magnesium citrate I sleep deeper.
Best of luck with it all.
Damian
Doctors will say your ferritin levels are normal, because what is normal for others in not normal for those of us with RLS. Do you know what your actual ferritin number is?
Yes Sue - it is 260.
I'm sure I mentioned this before, but one should take magnesium 3 hours apart from the gabapentin as it reduces the gabapentin absorption, so you might be able to get by with less gabapentin if you took it this way. However 600 to 900 mg is a low dose, so no harm if you continue the way you are assuming it is controlling your RLS.
Hi Damien, thanks for sharing that with me. I appreciate it. I also take magnesium citrate and have tried iron supplements and gabapentin - unfortunately none helped 😔. Im glad to hear it works well for you - its fantastic when you can find a solution. I have to keep at it until I find something that works for me. All the best.
hello I am in a similar position to you terribly insomniac I take pregabalin 200 mg at night any stronger dose and my heart palpitations go through the roof! I take a beta blocker at 10 pm and that seems to help with the palpitations but I can’t sleep because of my rls I have to resort to a sleeping tablet zopiclone to have a chance of any sleep hope this helps
That sounds terrible. So sorry to hear that. Its helpful to know that higher doses make the palpitations worse - I will remember that. Thanks for replying. Hope you find a solution.
I have been suffering from insomnia for a long time! I still don't know how to overcome it forever. I am now taking sleeping pills from canadapharmacy.com/ which work great for me. But when I start a difficult week at work, I can lose sleep again and turn to medication. Perhaps you need to work less and everything will be fine
A quality CBD liquid is extremely helpful for me and many others who experience insomnia. I take 1/2 dropper which is 1,500 mg of full spectrum CBD every night an hour before bed along with 12 mg of a Delta 8 gummy. I get very sleepy with both of these. Prior to this I was using a thc gummy which also worked not quite as well. I have had great success controlling my severe RLS now with 300 mg Gabapentin, 2.5 mg LDN ( low dose naltrexone) and the RLS patching protocol using Lifewave patches. Lifewave is a world wide company that produces stem cell activation patches that are non-transdermal. The patching protocol for RLS uses the Aeon patch ( antiinflammatory) and the Energy Enhancer patches placed on acupuncture points. When I use these patches I sleep long hours with a lot of deep and REM sleep that I was missing for years. These patches have been a real game changer for me, as have the CBD and Delta 8. Prior to using the patches I was smoking cannabis multiple times a night to get any sleep but waking up heavy headed. I’ve been gratefully off Pramipexole for several years now and will never go back.
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