Neurologist post update for RLS

[Keith1231]

This an update on my 'Neurologist' post above from two months ago:

A few months ago, Dr. Rafiq prescribed a small dose of Buprenorphine to address my RLS symptoms. Unfortunately, the medication didn’t bring the relief I hoped for—in fact, it left me feeling excessively drowsy the next day. I communicated my concerns to him via email (facilitated by his helpful secretary), and he responded swiftly.

During a prior discussion, I had mentioned Dipyridamole, an antiplatelet drug, as a potential treatment for RLS. Dr. Rafiq took this seriously and followed up with a phone call to explore the idea further. While he was willing to prescribe it, he had to consult the medical council due to its off-license status for this condition.

Yesterday, he called me with an update: unfortunately, the council declined the use of Dipyridamole for RLS. However, he had already planned the next step forward. He informed me about a consultant from Cambridge who holds a monthly clinic at the Norfolk and Norwich University Hospital and arranged for me to see them before Christmas.

I’ll keep you updated on what happens next, but for now, I’m immensely grateful for Dr. Rafiq’s dedication and persistence.

[Joolsg]

That is such a shame Keith. Did Buprenorphine stop RLS symptoms at all?Did you try reducing to 0.2mg?

I'm just wondering if the excessive daytime drowsiness may have settled after a month.

As others have said, I'm not convinced dipyradimole would work for you. There is one study by Dr BorreGuerrero. And it seems that patients previously on DopamineAgonists do not do so well.

Presumably you are not taking anything at all for RLS at present?

What symptoms do you have? Have you completed the IRLSS chart ?

[Keith1231 in reply to Joolsg]

Hi Joolsg, I tried various dosages, one of the main reasons was I stopped breathing one night and panicked. At 3am I called 111 and eventually spoke to a doctor who said to stop taking the BUP, so I did. I wanted to try Dipy just to rule it out and myconsultant was of the same opinion. I stil get the odd night where my legs and arms move about but it's mostly a sence of pressure and hot lower legs. I have been on furisamode for sometime now thinkng it was water retention, it has helped with the swollen legs but not the sensations. I am not aware of the IRLSS CHART, WHERE DO i FIND IT? sorry for caps lock I can only type with one hand. lol

[Joolsg in reply to Keith1231]

rls-uk.org/symptoms-diagnosis

All set out on RLS-UK website.

Scroll down to severity scale. The chart is downloadable and you can print it and complete.

All doctors and neurologists should give RLS patients a chart to complete. We know they don't.

[Jellylegs61 in reply to Joolsg]

When I click on the above link it states Error 'Page not Found'

[Kaarina Administrator in reply to Jellylegs61]

Does this work OK? rls-uk.org/_files/ugd/7f645...

[Jellylegs61 in reply to Kaarina]

Yes! Thank you Kaarina

[Joolsg in reply to Jellylegs61]

I've edited post so you can click.

[Keith1231 in reply to Joolsg]

I scored 33 on the IRLS form. What it dosent ask is 'what are your symptoms'?

[Joolsg in reply to Keith1231]

The chart assumes you have been diagnosed and your symptoms are RLS.33/40 means you have severe RLS so you do need treatment.

Unfortunately, Buprenorphine side effects seem to be extreme in your case. Methadone and Buprenorphine are known to cause 'air hunger' where you think you can't breathe.

However, Buprenorphine is regarded as the least likely to cause respiratory depression- but it does cause anxiety/panic attacks which can mimic severe lack of breath. That might have been what you experienced.

I took 50mg pregabalin for a few weeks and it completely stopped my panic attacks Buprenorphine.

I do hope you can work with your doctor to find a suitable treatment.

[SueJohnson]

Who is the consultant and which clinic?

[Keith1231 in reply to SueJohnson]

Dr Rafiq, NNUH NORWICH.

[SueJohnson in reply to Keith1231]

I meant who is the consultant from Cambridge who holds the clinic?

[Keith1231 in reply to SueJohnson]

I will find out at the apointment.

[SueJohnson in reply to Keith1231]

I'm concerned because looking at the clinics the closest one I found was one for Parkinson's and the doctors there are likely to suggest carbidopa/levodopa which although not technically a DA like pramipexole acts like one and can cause augmentation. The others to avoid you probably know which are DAs are ropinirole and the Neupro (rotigotine) patch.

Other possibilities for RLS include 1) kratom if you aren't taking a sleeping pill or 2)medical marijuana. I can tell you where to get these. Clonidine helps and it is good for the high blood pressure you have. You are really running out of possibilities. There are a few more that can help if these are not possible.

[Ced60 in reply to SueJohnson]

hi Sue I spoke on the phone to Chris Murphy this week and confirmed that approx 6 months since my last dose of Pramipexole and taking 1mg of Buprenorphine I am still getting daily symptoms . He said that he could only increase the Buprenorphine to 1.2mg and suggested I try the medical cannabis (he can’t prescribe it) . Where is it that you would recommend please ? many thanks

[SueJohnson in reply to Ced60]

You can get it from Curaleaf clinic. Also alternaleaf.co.uk/ or google medical cannabis clinics. According to Joolsg "You fill out a form, they contact your surgery for medical records. You book a zoom tele appointment, pay £45 & they then send a link to a pharmacy who you pay online. The cannabis is then couriered within a week".

Vaping should give immediate results

[Ced60 in reply to SueJohnson]

Thanks Sue x x

[SueJohnson in reply to Ced60]

Most people say that Indica is best.

[SueJohnson in reply to Ced60]

I just found out Sapphire is the old name for Curaleaf clinic so I have edited my reply.

[Marymill in reply to SueJohnson]

Hi, just to let you know it's £50 for first consultation at Curaleaf, second one 3 weeks after beeb accepted is free. Then £50 every 3 months.

[SueJohnson in reply to Marymill]

Thank you.

[DNoda]

hi Keith, just to mention that dypiridamole didn’t help me and marijuana helps tremendously

[Keith1231 in reply to DNoda]

Thank you. I need to ty Dipyridamole it just to rule it out. I have tried medical marijuana but that didnt help. I bought a bottle through the coerrct channels that cost £150 it tasted discusting, all it did was make me hungry....

[SleeplessinNC]

if you dig into the Mayo protocol, I believe, in recent years there was mention that only smoking cannabis helped RLS. I have found that to be true for myself, having tried tinctures, edibles, vapes, etc. Your post sounds like you tried a tincture (drops in the mouth). I am not a fan of smoking but it’s the only form that helps zero out my symptoms and allow me to sleep at times. It might be worth circling back for another try. Best of luck.

[ucdailoi-no-1]

I had the same experience, just as I have had with a multitude of other drugs for other conditions..However, the fact that my restless legs was nipped in the bud when I started with Buprenorphine meant I persevered with the tiredness.

My starting dose was 1/4 of 0.4 mg.... That worked very well.. I have woken during the night if the problem returned, and taken another crumb. The result is truly wonderful. I sleep well and no sight of the RL.. This morning I was still in bed at 9am and dozing.. Thats the 2nd time in nearly 4 weeks..

MY suggestion is to lower the dose significantly and start again..

[Keith1231 in reply to ucdailoi-no-1]

Thank you. Are you refering to Buprenorphine?

[ucdailoi-no-1 in reply to Keith1231]

Yes...

[Bieler]

Have you tried tramadol? It’s been a Godsend for me and others on this forum. Best of luck to you.

[Keith1231 in reply to Bieler]

I broke my back 18mth ago and tried it then but it made my very constipated to a point I had a hospital visit. At the time restless legs was the last thing on my mind. Thanks anyway.

[Bieler in reply to Keith1231]

I’m sorry to hear that. Sounds awful!

It’s funny that is exactly how some people stumbled upon it as a treatment for RLS. They were prescribed it for a broken limb or something and their RLS disappeared.

To me, it’s a “shit” drug for regular pain but it helps with the neurological pain somehow. My dr prescribes it to me off label and I do get occasional constipstion but nothing like yours. I just take MiraLAX and I am good to go.

I do take a low dose of only 50 mg 4x a day.

All my best to you. Take care.

[Keith1231 in reply to Bieler]

Thank you. At the time I broke my back I had several things going on within a 4 to 5 week period. Broken T10 vertibra: Colitis flare-up: Pseudomonas lung colinisation needing 3 weeks in hospital for IV antibiotics. Troublesome times. All in all restless legs I shouldnt complain about.

[ucdailoi-no-1]

Gawd that is dreadful. Priorities suddenly change when you are severely constipated.. I am aware that might happen, so am armed with options. Luckily I have not had to deal with constipation

[maribarosay]

this is what I use and it’s the only thing that works so far. I am on a patch called Ropinole 8 mg. I also take tramadol 50 mg every night. And lastly, I take temazepam 30 mg every night. I also take Tylenol 500 mg and ibuprofen 800 mg as needed.

[Keith1231 in reply to maribarosay]

Thank you,