Any one consulted Prof Mathew Walker ( UCH London) ?

Good morning everyone!

Wondering if anyone in the UK has consulted Prof Mathew Walker (UCH) in London?

If so what are your thoughts.

I'm biting the bullet and seeing a private doctor.

[Joolsg]

I know someone else on this site has visited Queens Square ( Prof. Walker works there). I think it's Martino.I would just say to do your own extensive research first. You have been on Ropinirole and pregabalin and clonazepam and you were taking Prozac which makes RLS worse.

If you're still on Prozac or Ropinirole, you will know from the information on this site that the Prozac should be replaced with an RLS safe anti depressant.

Be wary if he suggests another dopamine agonist if you had augmentation on Ropinirole and it would seem you also experienced augmentation on pregabalin so perhaps low dose opioids like Oxycontin or Buprenorphine would be the way forward.

Do let us know what he says. Finding neurologists who know anything about RLS is rare in the UK.

[Hidden in reply to Joolsg]

Thank you for your reply.I'm not taking prozac anymore which is good.

I'm so depressed with the lack of knowledge from the medics!!

My GP who has more or less told me there's nothing else he can do. I was in quite a state and most upset so he was eager to prescribe an antidepressant ( Mirtazapine ). When I collected this from the chemist and read the leaflet one of the side affects is restless legs. You really couldn't make it up could you?

Good Luck for the radio slot tomorrow... is it going ahead.

Many thanks again.

[Joolsg in reply to Hidden]

It is depressing. If you have a decent GP willing to listen & read the research papers we send you're lucky. Otherwise it's totally unacceptable and leads to poor treatment & serious adverse consequences for the patient.Every GP practice should be made to read the NICE & NHS info and buy Dr. Buchfuhrer's textbook.

Still no dates for radio broadcast but I'll post links when available.

Good luck.

[Hope61 in reply to Joolsg]

Hi there Do you know if there is a list of meds that can cause RLS. I take something for BP, cholesterol and Sertraline

I just started Gabapentin and I'm weaning of mirapex. Thank you !

[Joolsg in reply to Hope61]

Sertraline makes RLS worse so discuss replacement with your GP.Here's the list of meds that worsen RLS and safe alternatives.

Text

[Hope61 in reply to Joolsg]

Hi JoolsgI can see that too blurry can you send me a link ? Thanks

[Joolsg in reply to Joolsg]

It sadly doesn't work on laptops or computers fro some reason. If you have a smart phone , you can click on the image and it's clear.There is no website link as it's from the Nightwalkers magazine and I took a photo.

However, it basically says avoid all anti depressants except trazodone, wellbutrin, lamotrigine, carbamazepine, oxcarbazapine & depakote.

Safe anti nauseates are Kytril, transderm scop patch, Vistaril and Zofran.

safe anti histamines are Allegra, Claritin and Clarinex.

The list doesn't mention blood pressure tablets /cholesterol but you could search the med and whether it makes RLS worse.

[ELECTRONTRAV]

Hello,I contacted Prof Walker a few months ago now, he seemed very knowledgeable about RLS and knew all the right questions one would expect. He suggested I should try temgesic but unfortunately it had very bad effects for me, I seem to be very intolerant of opoids so I am back to the usual methods of dealing with RLS.

[Hidden in reply to ELECTRONTRAV]

That's great! I'm not intolerant to opioids. You've given me a bit of a boost and I'm going to contact him tomorrow. Thanks so much

[Joolsg in reply to Hidden]

That's fantastic that Prof. Walker is willing to prescribe Temgesic/Buprenorphine.

[Joolsg in reply to ELECTRONTRAV]

Did you have extreme nausea on temgesic? I had really bad side effects at first but managed to deal with them all within 3 weeks. (extreme nausea and vomiting/ panic attacks/sweating/racing heart.)I'm so glad I did as I'm now 0/40 on the IRLSS instead of 36/40. Most Temgesic side effects settle within 3 weeks.

[ELECTRONTRAV in reply to Joolsg]

Hello Joolsg, about 30 minutes after taking the Temgesic I started feeling very out of control of my body and and started hallucinating. and as someone who likes to be in control of me, it was very unsettling. Eventually I went to sleep, but it was not something I wanted to do again.

[Joolsg in reply to ELECTRONTRAV]

Not pleasant. I had severe panic attacks/anxiety & like you, hate feeling out of control. Luckily a small 50mg dose of pregabalin stopped the attacks.Hallucinations doesn't sound pleasant at all! My dose is 0.3mg. I use a pill cutter. I'm hoping this low dose will keep working.

It's a shame you suffered Hallucinations. That must have been scary.

[Munroist]

Matthew Walker has written an excellent book called Why We Sleep which is well worth a read and probably a lot cheaper than a consultation, especially if you get it out of the library like I did. I don’t recall him saying much about restless legs but maybe he didn’t have space to go into it.

[HappyGreenBean in reply to Munroist]

Different Matthew Walker. One is an Australian living in the US and I believe works at Stanford the other is a Professor in London, UK who currently runs a private practice and an NHS practice specializing in epilepsy but also seems to be knowledgeable about RLS. I doubt a book would supplant a prescription though! But, the book is a great read nonetheless.