Can you please help me prepare for the appointment. I have augmented and suffered since childhood. Pregabalin caused frequent dizziness and falls. On Gabapentin at the moment, I also have bad balance issues (like being drunk). RLS is not eliminated.Please advise on dosage of opiod, which one would be best to start off with and do I need to wean off Gabapentin (taking 600 mg at 8.30 p.m.)
Thanks in advance for your valuable advice.
PS: I live in the UK and have an appointment with Sheffield teaching hospital
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Moonwalker1967
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It depends who you will be seeing.Opioids are the next step in treatment under the Mayo Clinic Algorithm. But the UK is about 10 years behind the USA and doctors are constrained by outdated NHS and NICE guidance.
You will therefore need a specialist who is willing to listen AND read the research and evidence.
Targinact (Oxycontin and naloxone to counter constipation) IS licensed for secondary treatment in the UK so that is the most likely drug to be prescribed.
However, we know from reports on this forum that Oxycontin doesn't work for everyone. Madlegs takes it and it covers his RLS.
I took 25mg and it didn't cover my symptoms. Oxycontin only lasts for 4 or 5 hours for many people. As it's prescribed every 12 hours- it can cause rebound/mini opioid withdrawals. The main symptoms are increased RLS.
So if taking Oxycontin every 12 hours does NOT work- you can ask for a smaller dose pill (5mg) every 6 hours.
If you're lucky- the specialist you see might be more up to date than most. And might be aware that Buprenorphine works very effectively for RLS because of its 25 hour half life.
But Buprenorphine is red listed in many prescribing areas/local formularly areas.
This means that GPs often refuse to prescribe it.
So first discuss with your GP whether they will prescribe Buprenorphine if the specialist recommends it.
HipHop73 has to travel to collect a prescription of Buprenorphine from his neurologist because his GP surgery refuses to follow the neurologists' recommendation.
If the specialist allows Buprenorphine- start with the lowest dose. 0.2mg sub lingual pills. You can ask for a daily prescription of 0.4mg to start. If 0.2mg doesn't stop the RLS within 2 hours- you can take another 0.2mg. Buprenorphine works quickly.
Average dose on this forum is around 0.4- 0.8mg. The Mayo has an average dose of 1 to 1.5mg.
Common side effects are sweats, constipation, opioid 'alerting' or insomnia and nausea.
The nausea and sweats tend to settle after the first month but you might need medical cannabis or zofran to reduce nausea.
I take 5mg cetirizine to reduce sweats and a small dose of pregabalin.
You can stay on 600mg gabapentin with Buprenorphine. When you get the right Buprenorphine dose- you can then very slowly reduce gabapentin by 10% every 2 weeks. That will hopefully avoid gabapentin withdrawals.
Thanks for your response. It won't be easy. That's ridiculous, they won't prescribe opioids. I only had 2 hours sleep last night. I won't be able to go on like this for the rest of my life!
I agree. The lack of sleep causes comorbidities ( Diabetes, heart disease, high blood pressure, strokes).Perhaps type up a detailed letter beforehand, arguing for opioids. It's easier if everything is written down.
Attach links to the Mayo Clinic Algorithm, the AASM guidance and links to Dr Andy Berkowski's website- relacs.com. And a link to Dr Winkelman's Massachusetts Opioid study.
Curbside allows doctors from all over the world to speak to RLS experts in the USA about treatment. I'd like to think SOME UK specialists would be willing to use it.
Hopefully you will see a compassionate doctor willing to LISTEN and do the necessary research.
"I won't be able to go on like this for the rest of my life!"
That feeling is perfectly understandable but dangerous. Sometimes I get no sleep. I'm careful of how I describe that situation to myself. I use Rational Emotive Behaviour Therapy (REBT) (from books and recordings) to tell myself
"This is unfortunate, damned inconvenient but not awful, terrible or horrible (as it could always be worse). And I can stand it because I CAN STAND ANY DAMN THING THAT HAPPENS TO ME!"
When I'm not in polite company, like here, I will throw in a few swear words to make it more motivational. Albert Ellis, psychologist and the founder of REBT, who never gave a hoot about polite company, would probably add in something like
"So the world is not the way I want it to be, tough shit! Too damn bad. But never awful, terrible or horrible. I don't have to like it but I can certainly stand it! Because I CAN STAND ANY DAMN THING THAT HAPPENS TO ME! AS LONG AS I TELL MYSELF I CAN!"
That's not shouting. (It's 2.30 over here, I don't want to wake people.) That's emphasis. Hope the swearing doesn't frighten anybody. But resilience is not a lightly held thing. It's gotta be strongly embedded. Namby pamby words won't do that.
Resilience is all about what you tell yourself. "Come what may I CAN STAND IT! NO SURRENDER!" Shout it in front of a mirror twenty times. Probably best not in a public washroom. Though it might catch on. Save the world.
And now I'm going back to staring at the ceiling for another 6 hours. I'm a busy man.
I may have told you this before but to come off gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks.
There are better options than opioids. My sister takes Tramadol with excellent success. Methadone is also an option. In my state I don’t have an option to use them.
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