RLS help in Scotland

[99selkies]

Hello everyone. I have suffered from RLS for over 20 years Controlled at the moment by Gabapentin. No idea what I will use when that stops its effectiveness Does anything know RLS sympathetic neurologists in Scotland? My nearest large hospital is Aberdeen but I would be able to get to Glasgow or Edinburgh or in fact anywhere if my GP was willing to refer me

[Joolsg]

Hopefully someone will post a reply soon. I only know of specialists in the S.E of England but Kaarina keeps a list of specialists mentioned by members so you could message her.Fingers crossed the gabapentin will keep working for a good few years.

[vonnie1947 in reply to Joolsg]

To Joolsg, I live in the south west in Worthing. Please can you tell me who to contact for help with chronic rls. My GP can't help.

[Joolsg in reply to vonnie1947]

Hi Vonnie, first can I ask you to join our campaign. The reason your GP can't help is because RLS isn't taught anywhere during medical training in the UK. Until it is taught, RLS patients will continue to suffer. Kaarina keeps a list of specialists.

Her last reply included these.

Text

[Kaarina Administrator in reply to vonnie1947]

You could try here, vonnie.

This is a recent recommendation that I have received.

Goring Hall Hospital, Goring by Sea, Worthing, W Sussex, BN12 5AT

Private

Dr Angus Nisbett, Specialises in Movement Disorders

Cost is around the £200 mark for a one hour appointment.

The link Joolsg is referring is here: healthunlocked.com/rlsuk/po...

[Vvalerie in reply to vonnie1947]

Ask for A referral to a specialist your GP should know who to send you to failing that to a pain clinic gabapentin is an excellent drug for me it works and that’s what counts.

[Jdmurph]

I'm glad it is working for you. I'm in the US/Texas. I developed cramp-fasiculation syndrome after receiving the Pfizer Covid vaccine. It's been extremely aggressive. I have found relief with high dose antioxidants, vitamin C, Turmeric, B complex, and extended release Gabapentin- Horizant 600 mg once a day. I have had a flare up recently and had to increase the dose to 900 mg. It has helped me tremendously. I hope this helps you.God Bless.

[Vvalerie]

Hi why do you think they will stop it ,? I have been on Gabapentin for years, I have mine for Chronic Pain /nerve pain ,I’ve never heard of it stop working. Hope this helps.

[BromazepamBrother]

You can come through the entire forum and you will find the same answers over and over my friend. There are three basic treatments you will usually see recommended which are one being Gabapentin. The second one would be benzodiazepines as they had me taking 20 mg of Diazepam AKA Valium add bad time and another 20 mg if I woke up or couldn't get to sleep from the r l s. The third one is not recommended and I don't know the appropriate term but it's a group of medications that inject dopamine into the body because at bedtime the body's dopamines drops in order to prepare for sleep but if it drops too low wish it does in some people for many different reasons depending on the person that is what causes the rls2 start at bedtime. This medication I was told they will not use in my location of Canada in Nova Scotia province because they say when they take you off it you get rebound are LS and it's worse than it was before being placed on the dopamine boosting drugs so you will have to remain on it for life to keep the rls at bay. The only other thing I can tell you is you need to boost your dopamine and for me a combination of taking Tylenol number one which is purchased here without prescription I take two tablets which each tablet contains 8 mg codeine so 16 mg of codeine at bedtime will help and the thing that tops it off or the cherry on top is to use a TENS machine. One of those devices you stick on your body and wires run to a controller which sends electricity to the muscles causing them to contract and then release and you can adjust the intensity and speed and pattern but they run around $100 or more but my wife's mother had one and it work better than anyting else I read on any forum and eventually I didn't need the tens just the Tylenol number one or I think paracetamol is the name for Tylenol in Europe but it's with codeine. I taper down to one tablet after I was fine with two and then went from one after I vote three months and started sleeping with none and my RLS was gone but mine was do 2 being taken off of a drug and that was a side effect of stopping the medication rls was but it doesn't matter why it all is from the same situation which is the body locking dopamine or not up taking or allowing it to be absorbed and it's causing you to have low levels if you're not absorbing it properly. You may see people say Lyrica may work as well but Lyrica and Gabapentin from what my doctor told me are almost identical if you look at the molecules or atom which is usually shown on websites like Wikipedia but anyway the only difference is one isotope or the design being slightly different so slightly that they are basically the same drug with slight differences like maybe onset of action or time of effectiveness but are both used to treat neuropathy and our LS bought drls here in Canada is an off-label use meaning it's not meant to treat it they just believe it helps from what they know. Good luck my friend I went through hell and almost committed suicide from my RLS and I hope you find a working solution and then can regain your usual self and happiness in life. Good luck my friend and last of all I must say I am not a doctor I am just speaking from my own experiences and what doctors here in Canada told me as I researched it for months on end.