Neurologist Support

[Jauny]

Does anyone in the UK have any experience of privately consulting neurologists that specialise in sleep disorders? I've been considering this but the costs are a bit intimidating. I'd happily pay, though, if there was a certainty of success . I was looking at Dementech Neurosciences in London who have a number of doctors specialising in sleep disorders, including RLS , which I suffer from. Has anyone used any of these?

[Typicallygaslit]

Hi, you might get a response if you post this on the Restless Legs Forum, which is a lot more active than this one!

[Jauny in reply to Typicallygaslit]

Thanks. I'm on there too!

[Cowbsky]

Hi,

_ Just to share.

I am 71. "sleep disorder" since 17; RLS since maybe 7, and UARS (upper airways resistence syndrome) also since 17, I think; and PSTD (found out some two years ago). Everything well managed these days and a rather good life quality;

_ suffered entire life, until some 6 years ago, when I retired and star study deeply all those stuff. Doctors (a geriatry) helped very little, except and very important, just to prescribe me, first time, going to my first PSG (polissonagraphy) some 7 year ago. He said in my first consult: "What?! How can It possible a person suffering for "insomnia" all life, and not never went for a PSG?! This a very primary step!"

_ Well, I confess: that PSG (and 3 more along last 6 years) started changing everything in my life. I have been using a bilevel CPAP since then, which I study deeply and knew to manage everything (pressures, and all dataset analysis that come ou of it, every morning);

_ Only medications I am on: Clonazepam , never more than 0.6mg, for decades (no side effecs; stopping and resuming many times), and since some 1.5 years ago, Lamotrigine (50 mg, no side effects, for my PSTD and anxiety;

_ sleep disorder, I am afraid, is a so broadly term. It would be nice if you be able to narrow it a little what exactly is happening;

_ Summarizing my case and what I concluded: RLS is the main culprit (well managed these days with Clonazepam + mainly some so-called energy techniques); second, come UARS (completely work out with the CPAP); then, third: PSTD (still interrupting my REM stages and bothering me a deal, with persistent nightmares).

l all the best

Marcio

[Typicallygaslit in reply to Cowbsky]

From my own experience and what I’ve read, it’s excess serotonin that disturbs REM stages and causes nightmares. I consistently have nightmares if I take anything that increases serotonin levels at night. Even paracetamol can do this. Buprenorphine has helped with the problem but it tends to keep me awake. From Fitbit I can now see that my REM is usually very poor. I don’t respond like ‘most people’ to drugs so it’s very difficult to get my voice heard by doctors. Could not tolerate clonazepam so have to try and cope using other medications.

[Cowbsky in reply to Typicallygaslit]

Hi, Typically

Thanks. I have been observing for a quite while my nightmares looking for causes. They are, by definition, able to wake me up some three-four times, either at beginning of REM or the end of trucated cycles (can see this very well on CPAP derived curves); serious stuff.

Some one year ago I start thinking on PSTD as main cause. However, by coincidence, just some five days ago, by using EFT and performing Dreamwork, it looks my nightmare could be associated with an accident with eventual subliminar brain-injury (when I was maybe 12). Brain injury, concussion, could lead to PSTD and in turn to nightmares. see literature below

Complicated things. Keeping studying e let us see. Anyway, for while, I have been able to suceed on getting sufficient sleep (most of the days, at least), even with the nightmares, by taking 0.5 mg of clonazepam + 50mg of Lamotrigine + EFT + energy medicine.

all the best.

Marcio

ncbi.nlm.nih.gov/pmc/articl....

ncbi.nlm.nih.gov/pmc/articl....

[Typicallygaslit in reply to Cowbsky]

Thanks, that’s interesting. I’m glad to hear Lamotrigine helps. Seems like a drug they wouldn’t give unless you have a real mental illness but I can see that it could be useful for insomnia. I use a small dose quetiapine, cant’ really cope without it but it also aggravates restless legs a bit. As I understand it, PTSD causes excess serotonin or some sort of serotonin disorder. So it all makes some kind of sense.