RLS Specialidsts and Medication

[scampicat]

Hi there all

I have suffered fro RLs for nearly 40 years. I've been on ropinirole for eight years but it is now augmenting. My Dr has referred me to a neurologist at a sleep clinic with a view to changing the medication. I will see how this goes, but if I have no joy, I would like to see a specialist in RLS (not just a general neurologist).

In the meantime, I would like to know if there are any specialist RLS consultants and where they are. I live in the Midlands, so most places are not too inaccessible, and I;m willing to pay privately if necessary.

Thanks in anticipation

[Joolsg]

i recently saw Prof Choudhuri's team at King's in London. He is supposedly the top RLS specialist in the UK. I don't think anyone gets to see him in the flesh though, as he's always away at conferences. He and his team don't do any private work - I tried that route! His waiting list is really long. It took 8 months before I saw someone - and that was a cancellation.

I saw a member of his team who was very thorough and answered all my questions BUT I didn't learn anything I didn't already know from this website and the members on here.

Also, I was a little concerned that the senior registrar I saw suggested pramipexole when I had made it clear I had augmented on Ropinirole and had had terrible, traumatic withdrawal over a couple of months.I know from this site and the S. California site that if you have augmented on one Dopamine agonist you will likely augment quickly on another ( with the exception of the slow release Neupro patch). I also wasn't very impressed with the view that I shouldn't expect more than 5 hours of very disturbed sleep. She also said I should stick with the low dose of 2 meds I am on.

I have since been in touch with Dr Buchfuhrer in S. California by email and he believes 7/8 hours of good sleep is achievable for severe RLS sufferers and that should be the objective of knowledgable RLS neurologists. He believes my meds should be tweaked to achieve more sleep.

So, although King's are the supposed top people, I believe there are better neurologists out there. I know people speak highly of a female neurologist in Newcastle who has spoken at RLS UK meetings, but I can't recall her name. Someone else may be able to direct you to her.

Jools

[Snowdrop1947 in reply to Joolsg]

On my first visit to Kings college hospital, I saw Professor Chaudhuri but the following telephone appointments are with a registrar ,who I will speak to next week.

I , too, was impressed with Dr Anderson when she spoke at the AGM and will attend the AGM again this year.

It's now 4.40 . Withdrawing from ropinerole.. I am taking nitrazepan to help me through, but RLS always wins in the battle for sleep!!

Sorry if above doesn't make sense. Very weary and miserable.

[Joolsg in reply to Snowdrop1947]

Hi Snowdrop,

I'm awake with the RLS as well. Withdrawal from Ropinirole is really, really hard. I went through it last August. I think you will need more than nitrazepan to help you through withdrawal. Strong painkillers like opiods are needed. I used tramadol and co - dydramol.

What did Prof Choudhuri suggest to help you get through withdrawal? I have a follow up telephone appointment with King's in June. What drugs have been suggested for once you are off the ropinirole?

jools

[Joolsg in reply to Snowdrop1947]

Hi Snowdrop,

I've looked at your previous posts and realise that Prof Choudhuri put you on ropinirole after you had been on pergolide for 20 years. I find that very worrying as the common view on this site is that you should not be prescribed another dopamine agonist after being on a DA that has caused augmentation previously.

Sure enough, you were only on ropinirole for 3 months before it caused augmentation and Prof Choudhuri gave you the highest dose.

I was concerned that his registrar suggested pramipexole to me after I had made it clear to her that I had suffered dreadful augmentation on ropinirole.

It is worrying that the supposed experts at Kings are suggesting dopamine agonists to patients who have already gone through augmentation.

Perhaps we should compile a list of specialist neurologists who have achieved good results for their patients. That is not the case for me with King's and it would appear that it is not the case for you either.

I suggest you ask your GP for help going through withdrawal from ropinirole. Tramadol or codeine or oxycontin. Use the search engine to look up augmentation and withdrawal.

Jools

[Snowdrop1947 in reply to Joolsg]

I also take gabapentin. Does that cause augmentation?

The recommendation is pregablin next and if that fails then tramadol

At least pergolyde ' killed' the RLS.

I will have lots of questions to ask at the next telephone appointment.

[Bkc1777 in reply to Snowdrop1947]

Hi.

Gaba does not cause augmentation

[Joolsg in reply to Snowdrop1947]

I do not think gabapentin causes augmentation, it is the dopamine agonists that cause that. It won't help with withdrawal but it will possibly work for you once the ropinirole is out of your system. I tried it after ropinirole together with codeine, but it stopped working after about 3 months so I switched to oxycontin and pregabalin. They dampen the RLS but it still breaks through most nights so I need to adjust the dose.

Ask Kings for advice on strong opioids to get through the last weeks of withdrawal . Otherwise you will get very little sleep and it is very difficult.

Hope Kings step up and start to help you through this. I have to say, I was not very impressed with their advice, and even less so after reading what you have been through.

All the best,

Jools

[Snowdrop1947 in reply to Joolsg]

I will have to look through my notes as my GP may have prescribed Ropinerole so I do not wish to dam King's on the forum.

I will certainly be discussing the various medications next week but what is oxycontin, does it go by another name.

[Joolsg in reply to Snowdrop1947]

Oxycontin is extended release oxycodone- an opioid. Do let me know who prescribed the ropinirole. If it was your GP, surely Kings would have asked for what meds you were on?

Jools

[Kaarina Administrator]

Hi scampicat

Kirstie Anderson (thanks Jools) spoke at last years RLS-UK AGM and she was brilliant. She will be speaking again at this years AGM too.

One of our forum members has seen her and was most impressed.

Dr Anderson runs the Regional Neurology Sleep Service with a clinical and research interest in all the sleep disorders. She graduated from Newcastle with distinction then trained in Oxford, Cambridge and Queens Square

[Ozxy in reply to Kaarina]

Do you know if she works in newcastle now

[Kaarina Administrator in reply to Ozxy]

Yes. Kirstie Anderson, a consultant neurologist, runs the Regional Neurology Sleep Service at the Royal Victoria Hospital in Newcastle.

[Ozxy in reply to Kaarina]

Thank you I will ask my doctor about her as I live in Gateshead so not far with a bit of luck he might refer me.

[yohlense]

Hi there. I too have been one Ropinirole since my 40's and now in my 60's and also went into the augmentation stage. What I have done has been a combination of various remedies and treatments. First I found the FB page regarding RLS and the supplement Quiet Legs that got me down from 3 mg of the medicine to 1.5mg. I also am using a laser infrared light therapy, increased Magnesium and recently Craniosacral therapy as well as Chiropractic work. This may not work for you, but the combinations seem to have reduced the duration and severity of the symptoms and I get good nights of sleep in longer stints than before all of these therapies. I wanted to share with you and perhaps you can seek some of the therapies yourself. Good luck.

[Joolsg in reply to yohlense]

hi Yohlense,

Are you still on 1.5mg of ropinirole?

Jools

[yohlense in reply to Joolsg]

Yes. I've been attempting to step down, but other health problems have thrown me off schedule. I've run out of the Quiet Legs and awaiting delivery.

[vivimay]

Hi, if you find any I would be most interested to hear from you. Many Thanks.