Has anyone suffered from brain shakes.

[Weepats1980]

Hello I'm new here and was 1st diagnosed with rls when I was 19. Then it was only my legs and now it's my whole body and I even feel as if my brain is shaking. My arms and legs can also jerki quite suddenly. I haven't been to the doctors yet about this as I feel they don't take me to seriously but I am going to make an appointment this week as it's quite worrying. I also forget things quite a lot and was wondering if this could be part of rls.

[Hidden]

I have gotten that but only recently and after I had developed M.E.

I was really frightened as my whole body was shaking and since then on several occasions I get what I call seizure sleep as I am really tired/dropping off to sleep and it feels like by brain is bouncing in my skull.

A member of the M.E. section told me it was my body's way of letting me know I needed to slow down - I was worried I had developed epilepsy!

It was very frightening at the start but I find it quite interesting now! In saying that I would urge you to speak with your Dr.

Can I ask, have you had any other symptoms? Have you been very tired and easily confused?

[Weepats1980 in reply to Hidden]

I do feel really tired and sometimes confused. I feel when I start to fall asleep I go into some strange dream but I know I'm not totally asleep. Then I sit up and can't think or explain the dream. Its weird

[Hidden in reply to Weepats1980]

Those symptoms are similar to what I experience with ME, particularly that where you are not quite asleep.

You could try resting up plenty, (and that means lying down to rest not watching TV or reading facebook), and see if that eases things. It would also be worth doing a lot of exercise/work and see if that results in excessive tiredness.

Have a wee read of this:

phoenixrising.me/mecfs-basi...

see if it rings any bells.

Good luck.

[Weepats1980 in reply to Hidden]

I'll have a wee read thanks very much ☺

[nightdancer in reply to Weepats1980]

Sleep deprivation will make you feel that way, too.

[nightdancer]

RLS causes sleep deprivation, and hence forgetfulness and "fogginess" Sleep deprivation disrupts a lot of things in our systems. RLS is neurologically related sleep disorder, so do not feel "weird" going to the doctor about it. you said you got RLS when you were 19, so how many years have you had RLS? So, I take it you are not on any meds for RLS. Could you be on ANY meds for ANY thing at all? There are several over the counter meds as well as prescription meds that can make RLS go wild, as in many cold meds, allergy meds, and OTC sleep meds, anything with Diphenhydramine in them (Benedryl) and they should all be avoided by people with RLS. Also, many antidepressants, muscle relaxers, anti nausea meds all can and will make 99.9% of us worse. See the list on rlshelp.org on the treatment page. Lists meds to uses, plus some alternatives, and also the list of meds to AVOID.

[Weepats1980]

Hi night dancer I've had rls for 16 years and I'm on pramipexole 18mg I was taking a lower dose a few years ago buy they uped the dose as it was effecting my arm but now I feel it everywhere and even during the day. I'm also on citalopram due to depression and panick attacks I get a scared feeling all the time. I'm also on lisinopril for high blood pressure. I think I'm just worried incase there's an underlying condition that is causing this but I'm going to phone the doctor on Monday. Thanks I'll have a look at the link now.

[Pippins2 in reply to Weepats1980]

Weepats could you go and check exactly what dose of Pramipexole you are taking? You are displaying symptoms of augmentation.This is where you up the dose and are ok for a while and then that dose stops working so well.Other signs of augmentation are symptoms starting earlier in the day and spreading into other body parts

[Weepats1980 in reply to Pippins2]

Hi pippins2 I'm on 0.18mg of pramipexole. It's driving me nuts.

[nightdancer in reply to Weepats1980]

First of all PLEASE tell me that 18 mgs of Pramipexole is a typo? That is way into Parkinson's doses, which are WAY tooo high for RLS. Starting dose of prami is .125 mgs, so you can see you would be several doses just to get to ONE mg. So, you are probably augmenting on the Pramipexole. The high therapeutic dose set by the IRLSSG (International RLS Study Group) is .88 mgs, so not even a full mg. You have some issues on that med for sure. Not a good idea at all. A high dose like that is going to make your RLS augment, which means get WORSE in the context of RLS.

[nightdancer in reply to Weepats1980]

Citalopram WILL make your RLS worse, to the point where some people just cannot take it. There are other things to try. But the class of SSRI's (your citroprolam) antidepressants and also the tricyclics will make 99.9% of us worse and I do mean incredibly worse. Please check the web site I posted on this thread.

[Weepats1980 in reply to nightdancer]

Yes I had a look at the website. I'll definitely be seeing my doctor. Really can't be doing with it getting any worse as if it's not bad enough.

[Weepats1980]

On my file it says Glenpark 0.18 mg tablet (pramipexole)

[Pippins2 in reply to Weepats1980]

Which country are you in Weetpats? Whatever you dont let your doctor up your dose any further. Put augmentation into the search box and stuff will come up.Once augmentation happens the only thing to do is get off the Pramipexole .Dont just do that without a doctors supervision as you will need strong painkillers to do it , many find Tramadol helpful others need even stronger meds.Do you see a Specialist?

[Weepats1980 in reply to Pippins2]

Oh I see. I'm in Scotland and although I've had this for sometime I don't really know alot about it. It was just recently I started getting worse then I came across this site. I'm so glad I did. Should the doctor change my rls med. My legs have already been getting sore but was just taking paracetamol which didn't work. I never knew it was the rls making me sore

[Pippins2 in reply to Weepats1980]

A good website you can go to which is a UK website is

RLS-UK.org , there is also a section for doctors.Tell your doc you have augmentation from the Pramipexole (he probably won't have heard of it) You could print off information to take to the appointment as that is a reputable, official website . Otherwise tell him to research Augmentation from Dopamine Agonists .Good luck

[Weepats1980 in reply to Pippins2]

Thanks very much pippins2 for all your help. I'll go and have a wee look now ☺

[Weepats1980 in reply to Pippins2]

Sorry. No I don't see a specialist I was thinking I should ask my doc to refer me

[Retren]

Wee pats I don,t know wether this is the same the worst attack I ever had which was horrendous was on a flight to Brazil We could not go to our room at the hotel and we were driven around Rio from 8am onwards I thought I would go mad it was even in my head and in the cathedral I was even banging my head on the walls and trying to keep still it kept recurring the entire time we were there and at that time I had no medication I put it down to bleached bread on the flight and prayed I never had anything like it again.Some dr suggested Brewers yeast it wasn't until my spouse got me some codeine that helped me.i thought I was the only one to have it in the head. I hate to say this but it is a considerable relief to hear others have had the beastly thing.