I have just been reading an article entitled as above, by Dr Richard P Allen, unfortunately I cannot post a link for some reason, but I believe that if you google the above title with his name you should be able to find it.
It was very interesting, they have done a study with MRI, and discovered a connection with glutamate in the thalamus, which is responsible for arousal, and think that even in those fortunate enough to have their symptoms controlled, this could be the reason for continued insomnia, which is me a T.
I hope you can understand me, I am not to great at explaining things these days, but I thought it could be interesting reading for you.
The article is published in lots of journals, Neurology today is one I think.
That is the idea of the study I think, to find the cause of the insomnia, not as a side affect of dopermines, but to see what other brain chemicals may be involved to improve understanding and hopefully treatment,
I have just read this article and this is me too. Very Interesting. I will take it to London and give it to the consultant.
I am due to go to GUY`S Hospital,sleep studies unit, London on May 10th for an overnight sleep study. At the moment I am wearing a Actiwatch, They sent it to me a week ago and wear it like a watch. It is a medical device that records motion and light, general activity, sleep patterns, and naps, as well as information about sleep quantity and quality.
I have to do a daily sleep diary. a Epworth sleepiness scale and a Becks inventory [ often used to asses how depressed you are ] While I am there i will have a overnight polysomnogram which gives the same information as the Actiwatch but they will compare the information they have collected while i was at home with the information collected in hospital.
I cant tell you how happy I am to finally get some proper tests and observation, after seeing three consultants, one a RLS specialist who referred me to this clinic. I have had RLS for 30 years and it got worse over the last several years effecting my life to the extent i lost my job. I am both nervous and happy at the same time about this overnight study. I mean can you imagine having someone watching you all the time.
I am going to take my laptop so if anybody is interested I will tell you what is happening through out the night ?
I am glad that I have been of help, I am very interested in your progress, and would love to hear how you get on.
Even before the restless legs started last year suddenly, I have had bad insomnia for many years, even though the RLS symptoms are controlled, I am just the same, I am lucky to sleep 2 or 3 hours a night most of the time. I also get plmd my doctor thinks, and I wake with a very high pulse, also severe palpitations, to the point I have to take 5mg of beta blockers a day.
Good luck, I wish you well, I would love to go on a sleep study at night, I may talk to my GP about the actiwatch and sleep study.
I had to wear the actiwatch for 2weeks but most of the time it was on my desk as i forgot to wear it.on sleepabout.com a dr wrote bcus thr device isnt very smart it will display that ur sleeping is this true?
It was n`t easy, it has taken me one and a half years too get to this point. First I went through several Gp`s before I did a daily dairy of what I was going through and a history of my RLS and how it has effected my life [ I actually lost my job because i fell asleep at work ] and took it to one Gp who I thought was a good Dr. At the time I was getting only 2-3 hrs sleep over a 24 hr period and was so desperate and distressed she read my diary and history and she said this made all the difference. My Gp referred me to one local Consultants who she said had an interest in RLS. He then referred me to another local Consultant who said he could n`t help me. Its their policy to try local Consultants first before being referred to a Specialist. The first Consultant was very nice and took a good history but wanted to refer me to another specialist who saw me for 20 mins and was clearly out of his depth He wanted to refer me to a further specialist in London A waste of the Consultants time and mine and NHS money. I was referred to a RLS specialist in London and he recommended a new medication [ which I did n`t take ] and a referral to Guy`s sleep disorder clinic. So its been a struggle but I am hoping i can get some help for my Insomnia without having to take painkillers and sleeping pills. When I first saw the sleep specialist for an assessment I knew straightway that he knew what he was talking about, he asked all the right questions so I am hopeful and more optimistic for the future.
i was just on another site and found this, they seem to think its connected, ??/ anyone else think so, found it on an rls site
Actually this is BIG news in the RLS circles. It has been posted everywhere on other RLS support groups that i know. It could mean that the dopamine connection to RLS, might not be as they first thought it was. It could also mean why some people cant use the dopamine meds because they do not work for them. They have to do more research and studies on this. But, it also means, even tho we all think that not alot of research goes on, it obviously goes on without us knowing, So, we are not forgotten out there in the research world. There are people working to help us, they are working to find a solution for RLS,
Thank you for posting this..always great to know the doctors are working on something for RLS..in the article Dr Allen cites Gabapentin as a possible drug of choice for reducing glutamate
Hi stephen,
He does, unfortunately for me I cannot take it, as I suffer severe dry mouth eyes and so on, and this drug makes it even worse, I wonder if there is any thing else similar.
I have done a little research, and Gaba is a natural alternative, although I would not want to mix it with my meds without checking with my GP.
I am suffering an attack of something that happens regularly right now, heart racing and missing beats, burning skin, dizzy and the shakes, maybe it is worth asking him if he thought it might help.
Thanks for your input.
Cazx
I also saw another study by the same doctor, about the way the brain uses iron, even if your iron count is normal, it can still be a problem for people with RLS, as their brains cannot take it up, interesting, it has been said before, but he seems to have conclusive evidence, albeit on a small scale
Cazx
• in reply to
i have this problem cazbaz, but it makes no difference to me how much iron i take, it makes no difference to me,
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Hi Tallula,
In the study, it was said the brain could not use the iron properly, so supplements make little difference, could be one day they will work out why, at least it sounded as if they could check this now.
Cazx
• in reply to
Cazbaz, could you put that study up on here about the way the brain uses iron. That could be an interesting read for others. including me, As i have always been led to believe that its the Ferritin Level that some RLSers have which can cause RLS.
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I will try to find it for you Ellisse,
Cazx
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The title of the Article is " Shortage of blood in mid - brain cells might be causing Restless leg syndrome" by Dr Richard P Allen, in a publication called Top News, I can't work out how to post the link with my android tablet! ! Sorry I hope this helps,
Taking Ferrous Sulphate tablets has made a difference to my RLS. It is still rumbling away in the background but I do get some sleep now most nights
I cant take Gabapentin either, and i know a few that have tried it and it didnt work for them. Then there are those who have been taking it for years with great success.
The iron thing has been around for years, its the Ferritin Level that counts for us RLSers, Ferritin should read 70 or above, but that does not work for everyone either, even when taking iron pills, Absorbing the iron is hard work for most of us, to get the ferritin level up, even then if you are lucky to reach a good level, it doesnt make any difference to most of us. There are a few lucky ones who say they have found their RLS symptoms have been reduced. So, we still have a long way to go, but every bit of research goes towards finding out the mystery that RLS is hiding.
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gaba doesnt work for me either, and i dont seem able to absorb the iron either, do you Elisse ? my ferritin level was 6 a few weeks ago
That is a low level... Mine was 25 when i got mine done a few years ago. i took the iron pills but didnt notice any difference, the only difference was the pills gave me really bad stomach ache and constipation. I dont bother to try them now...
I did enquire about getting IV done for the iron, but its not something that they do in the UK for RLS.
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yes i know, they made me have it done again, frowned at me as if i did something to my blood..lol.. and im the same with the nasty effects of iron pills.
I have heard if the iv's but they are done in USA i think ??
Well arrived at the clinic at 6 pm and was greeted by the Sister in charge who showed me to my room, I have my own bathroom. TV and everybody is so nice, the Sister explains what is going to happen and first they give me time to settle in and ask me to get into my night dress and take off all my makeup. I am so far very impressed. The place looks like a private ward and the staff are professional and kind.
I have just realised that i havent had any tea and its 2.30 am so I will go and have something to eat and get back to you later.
hope they find out your problems, and go at least some way to helping you bambisoloved, good luck
I hope the night went well for you, and perhaps they are closer to working out what is going on, and maybe some treatment that will help you, bambisoloved!
I had to wear an actiwatch for 2weeks but most time it was on my desk .on sleepabout.com the dr says bcus the device isnt very smart when u dont wear it and its placed on a surface it will display that u r asleep is this true?
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