Last week my husband saw his neurologist for an update. His dose of Gabapentin was raised to 1200mg at night (2 x 600mg) - only other meds are Bisoprolol and Escitalopram - taken for over 15 years. Since raising the dose of Gabapentin his condition is getting worse. His PLMA is so bad, when he goes to bed he lays there for about 15mins and then it starts, he has to get up and starts pacing around the house and walking the streets and the next time he goes back to is about 5am, a couple of times he managed to get 2hours sleep then but then his legs start and he gets up until bed time. Life is becoming unbearable (suicidal for both of us) We are unable to do anything (luckily we are retired so do not need to work but we cannot visit our family or go out for the day because he is so tired but cannot rest for fear of his legs starting. Any advice please.
Update - suffering worse: Last week my... - Restless Legs Syn...
Update - suffering worse
When did his RLS /PLM start? Recently or has he had it for years?You mention bisoprolol and Escitalopram, both of which are known to worsen RLS.
Clearly, the bisoprolol is needed for High blood pressure, but if you can control the RLS, good sleep will probably reduce the blood pressure and he may be able to reduce the pills.
Escitalopram is an anti depressant that triggers RLS but there are safer alternatives. If it's for depression, trazodone or wellbutrin are safe options. If it's for anxiety, a benzodiazepene might be better.
Discuss fully with the GP.
I'm shocked the neurologist hasn't mentioned that the 2 meds your husband is taking are known triggers for RLS. You need to raise this with him.
In the meantime, as 1200mg gabapentin isn't helping at all, the options are to increase OR switch to pregabalin or a low dose opioid.
Was your husband ever prescribed Ropinirole or Pramipexole or the Neupro patch before gabapentin?
Hi, my husband has been on escitalopram and bisoprolol for over 15 years. The trouble only started last March when he was on co-beneldopa (they thought he had Parkinsons). We think this is the pill that started the problem, he was then put on ropinerole and clonazepam. Both of these drugs made the problem worse and so far although he has stopped taking these he is just as bad.
I was going to write that there are alternatives to bisoprolol for high blood pressure if this was causing the problem...
But perhaps as you say the co-beneldopa triggered the issue, and then the longstanding treatment of a beta-blocker and a SSRI have kicked in to continue the problem.
My consultant knew that I had RLS which may be why she never put me on a beta blocker (although she was ignorant on the subject of statins).
I was first on perindopril which gave me a cough, but then went onto losartan. While some people have said that losartan also exacerbates RLS, I have not found this to be the case: I was on 25mg/day for months and now 50mg for the last 2-3 weeks with no RLS at all.
As Jools has said, there are safer alternatives to the SSRI.
Thank you but he has been on Bisoprolol for over 25 years with no problems and the Escitalopram 15 years, again no problems. Problems only started on Levodopa which was a high dose and probably not needed.
Indeed, but I'd wonder whether the combination of levodopa that apparently triggered RLS followed by ropinirole may have made him vulnerable to two known RLS exacerbators which he'd previously been able to tolerate.
Just a theory, but in such apparent extremis for both of you it might surely be worth trying alternatives for the beta-blocker and the SSRI? Possibly one at a time. Just something to discuss with your doctor.
Forgive me, I had forgotten the whole story. Your husband developed RLS after high doses of levodopa and Ropinirole.It may be time to take legal advice.
Why did they think it was Parkinson's?What were the symptoms to make them believe it was Parkinson's?
I suggest you see a different neurologist and ask for a full medication review.
Now that your husband seems to have full blown RLS and gabapentin isn't helping, another opinion may shed some light on things.
The neurologist may prescribe a higher dose of gabapentin or switch to pregabalin or prescribe low dose opioids like Oxycontin or Buprenorphine.
Bear in mind gabapentin takes 3 weeks to be effective for RLS so if he only started 1200mg last week, there's still time for it to kick in.
In the meantime, can you get medical cannabis? That really helps with sleep and can control RLS for a few hours.
I was told that Gabapentin does not stay in the body so why does it take so long to become effective. Sorry clutching at straws now.
drugs.com/medical-answers/l... am not sure why it takes weeks for gabapentin to become fully effective. This article doesn't give the reason, but confirms it can take 4 weeks to become fully effective.
Can you tell me if red vein kratom is any good please
It certainly worked for me in 2020 until it gave me panic attacks after 5 weeks so I stopped. And it is illegal in the UK since 2015 so be aware of that.If you do decide to buy from kraatje.eu they post quickly and discreetly.
It works like opioids but has caused problems for some. It can cause tolerance so people advise switching strains regularly. It tastes disgusting so best taken mixed with orange juice. Start low, 1/2 teaspoon and then 1 teaspoon in orange juice.
Just to confirm, I really think your husband needs an urgent referral to another neurologist.I'm not sure kratom will help him if there is an underlying neurological condition that needs different treatment.
And kratom can quickly cause tolerance for many and getting off high doses is very difficult. I would only ever suggest using it on an emergency basis to get off dopamine agonists. I would not suggest using it as a long term solution to RLS. It's legal in the USA and many European countries but is illegal in the UK.
I would suggest you see Prof. Walker at Queen Sq, London. He does phone consultations, but in your husband's case, he would probably need a FTF to discuss the Parkinson's misdiagnosis and the drug induced pain and RLS he is now suffering.
So sorry y'all are having such a hard time. My last 3 weeks of getting off Requip were difficult. After being off Requip for that time, I started Gabapentin 900 mg. It took a few weeks to notice any real difference with Gabapentin. It is now nearly 2 months and I am able to sleep with almost no RL problems. I take 300 mg around 8pm and 600 mg around 9:30 pm. I have taken Lexapro (Escitalopram) for anxiety and OCD for many years. I know it bothers some but so far it hasn't effected my RL. Otherwise I take nothing that is known to aggrevate RL even over the counter meds. Hoping you find some answers soon.
Is he taking 600 mg 1 to 2 hours before bed and the other 600 mg 2 hours before that? Being on that high dose of levodopa may have damaged his dopamine receptors so that gabapentin isn't working. Or it may be a coincidence that his symptoms got worse when the dosage was increased and he came off the levodopa and ropinirole too quickly and he is still suffering from DAWS. In either case the solution is a low dose opioid. Kratom can help in the meanwhile but is not recommended for long term use. Delta8 gummies can help. Has he tried clonazepam for sleep or if that makes him tired the next day Ativan or Ambien? Has he had his ferritin checked? Has he tried taking magnesium glycinate?
Yes he is taking them as you state, but it has only been a week on this higher dose. Perhaps we are expecting too much. He was on Clonazepam after Ropinerole and it made things so bad he ended up at emergency hospital because he could not stand the pain etc. Ferritin has been checked and his alright. We have tried the Magnesium but to no help. Kratom is too expensive for us to import to the UK but we could try Delta8 gummies
You can get a 25 g sample pack of red vein kratom for 5.95 pounds from kratom.co.uk to see if it works.
Joolsg buys kratom from kraatje.eu/contents/en-us/d... You might ask her about it. I'm sure she would have better advice than I do.
Kratom is illegal in the UK since 2015 but many people still buy from The Netherlands and they send it discreetly as 'herbal tea'.I used it when going through withdrawal in 2016 but clearly bought from the wrong place.
I bought from kraatje.eu in 2020 and it worked well for 5 weeks until I developed panic attacks so I stopped.
I just think your husband needs a full review as there's something happening and the neurologists have made his condition far worse, not better.
Perhaps try Professor Walker at Queen Sq.
I remember now - he did have ferritin checked and doctor said was OK. However what is OK for others is not OK for those of us on RLS. Find out what it was.
ferritin was 165, Neurologist said it was ok.
Yep that is fine.
Ephemera: I wrote to you 5 days ago, as your pure hell and desperation upset me. Now you mention suicide, which most of us totally understand. I gave you the kraatje.eu website (thanks to Joolsg, and as I do for everyone in the UK as they don’t know where to get kratom) and told you to order it as tea and how it stops RLS in mere minutes.
I know you saw it before it was deleted-unbelievably someone turned me in as an advertiser or spammer when it is easy to see that I try to be helpful on this site. So now here you are, suffering even more-there is NO reason for anyone to suffer this much. Use it until you figure out your meds, as I said before.
PS-Delta 8 gummies will help you sleep but will not cut the RLS. Sue found a great kratom price. When I checked for someone else on this site, I think it was next day air for $80 EU. So, worst case, next day delivery and to get your sleep and sanity back tomorrow night!!! If it is too much, then you probably aren’t to the edge yet, which is good.
Thank you for your reply. Would you say the Kratom will get rid of the severe PLMA as that is what is driving him insane more than RLS?
Absolutely-I have both, as well. It is amazing and works so quickly-it has totally saved many of us. But, you have to be careful with it, too.
I going to get some red vein. Do you just make tea with it and how much per cup.
Start with 1/2 TEASPOON in water or whatever liquid you want. It tastes terrible. (I think they just sell it as “tea” so it can seem legal.) Then add another 1/2 teaspoon, and another, until you have relief. Most people are covered with 1 teaspoon, at first, but you may need it every few hours overnight. There are also capsules you can maybe try later.
I just mix kratom with 8 oz of milk and a packet of Nestle's Breakfast Essentials (used to be called Instant Breakfast) and it makes palatable any amount of kratom up to 10 grams (5 level teaspoons). Yes, most folks report that red vein Borneo is a favorite. Of course, start off with smaller amounts of kratom in order to gauge how sensitive you are to it.
Dear Ephrmera,
I , and am pretty sure all of us are feeling for you— and feeling you and your husband’s desperation . If you do have some money I think it may be worth making a video call appointment with Professor Chris Earley at Johns Hopkins in Maryland USA. as I don’t know any really good expert in the U.K. You would need to first send him a full timeline of the symptoms and medication that your husband has had over the years so he can understand in detail the problems in order to make best use of the appointment. For International patients the phone number to make an appointment is : +1 410 502 7683. There are other docs in the U.S. such as Mark Buchfuhrer but I don’t know if he/they would be better than Chris Earley. It’s just an idea and you should certainly not have to spend such money nor seek advice thousands of miles away . But yours is a tricky RLS (I guess as are many) and desperate times… etc. Lots of LOVE to you both
Or you could google ‘make appointment with Professor Chris Earley’ and then you can read a bit about him first
I can HIGHLY recommend Dr Earley at Hopkins as well. I am now off of all anti-depressants as well as Neupro with no RLS meds needed. Tapering off was a nightmare but I can finally sleep!
How do you manage your symptoms without medication?
And do they tend to be mild, moderate or severe?
I had been on Mirapex then Neupro for 13 years. I experienced augmentation and was barely hanging on. I was also taking the maximum dose of Cymbalta. I went to see Dr Earley and agreed to detox off of the Neupro, I also separately tapered down then discontinued Cymbalta. Dr Earley said it was possible that once I got off Neupro I might not need anything….and that’s what happened. I have just about zero symptoms and now fall asleep medication free. It is possible. I have my life back. The medication was truly causing the symptoms.
Wow - that is great !
Gabapentin was useless for me. Ropinerole helped, but caused bad nausea and stress worrying about augmentation. My current Dr. tried me on a low dose of Methadone. Saved my life. No episodes in that last several months. No side effects.
where do you live kcraig? In USA or U.K. . Trying to get methadone in England is nearly impossible. I’ve been to discuss with drug clinics and writing to many important groups and we haven’t made much progress. I am not giving up . Methadone used carefully and correctly definitely has a great place in the treatment of refractory RLS . Fantastic for you .👍👏. Maybe a solution or partial solution for Ephemera 🤞🤞🤞
We hear you. My husband could be your husband's twin when it comes to RLS. Stay strong.
When I was placed on gabapentin it also caused the PLMD, which I had not experienced previously. In addition it caused severe dizziness, loss of balance, and mind fog. I started at 100 mg, eventually got up to 1200 mg. My doctor removed me from gabapentin. I had to wean off of it slowly. There is a FB group dedicated to the horrors of gabapentin, it is not a medication that every person can benefit from. I realize it is a miracle drug for many and can relieve RLS symptoms, but it is just not for everyone
I suggest a low dose opioid also, it may work amazingly? 5mg of oxycodone at night on top of my Norspan patch settles me enough that I can sleep. The patch on its own no longer works for me as it did.
Seems to be the only thing that settles me, luckily my gp in Australia is prescribing this for me, I also had no luck with my neurologists.
Hope you find a solution
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