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Old 10-13-2006, 10:43 AM
Lauren88 Lauren88 is offline
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Default Pulsating sensation when lying stopping sleep - any ideas?

The title says it all - as you can see from my profile I have CP and hydrocephalus, and this started about 5 years ago when following a shunt infection it was found I only needed one shunt so only one was put back in (right side.) I used to have one on my left, which is where the pulsating is worst. I'm currently taking amitriptyline which has improved things a lot but I would love to get rid of this! or even have a name so people won't just think I'm being lazy! Cts and MRI have shown nothing and docs have no idea. Any ideas? Thanks ***
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Hi I'm Lauren from the UK. I have CP and hydrocephalus (done the gauntlet, 1 shunt, 2 shunts, back to 1 shunt and now an ETV) as a result of an IVH following birth at 26 weeks gestation. Both traumatic at times but they make me who I am. Reasonably stable now except for long-term trouble sleeping due to pulsating sensation when lying down but taking one day at a time and doing well.
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Old 10-16-2006, 03:19 AM
uvamomb uvamomb is offline
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Default Hi, Lauren

Lauren,
This may be way out in left field, but I have restless leg syndrome, which makes my legs feel like things are crawling inside them. They gave me Requip, which is a drug used for Parkinson's disease. It stopped it. Just a thought, maybe it or some other Parkinson's disease drug would help your situation.

Hope this makes sense and hope it helps. That must be a miserable feeling.
Take care,
Kathy
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  #3  
Old 10-17-2006, 03:04 PM
Lauren88 Lauren88 is offline
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Default Thanks Kathy

what is the generic name for that drug please? I am in the UK and know things can have different names so I need to know what I'm asking for, especially since this is not a diagnosed thing

I really appreciate the input though and thanks for replying - sleep-deprivation sucks whatever its causes but Restless Leg Syndrome must be a pain (literally and metaphorically) as well so I hope you're able to keep that under control if not get rid of it altogether, in an ideal world
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Hi I'm Lauren from the UK. I have CP and hydrocephalus (done the gauntlet, 1 shunt, 2 shunts, back to 1 shunt and now an ETV) as a result of an IVH following birth at 26 weeks gestation. Both traumatic at times but they make me who I am. Reasonably stable now except for long-term trouble sleeping due to pulsating sensation when lying down but taking one day at a time and doing well.

Last edited by Lauren88; 10-17-2006 at 03:10 PM.
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  #4  
Old 11-05-2006, 01:23 AM
Rolly Rolly is offline
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Default Rls

Hi,
I was told that I had RLS and he said that it was not related to Ms.

My legs dont jump but about 20 minutes after getting in beg, I get this acking feeling in my lower legs. I get up , take an advil and I'll sleep athe rest of the night.

During the day, my legs are weak and calves are a bit sore.

So what do you think.
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  #5  
Old 12-04-2006, 09:49 AM
Traveler Traveler is offline
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Default Generic Requip

Lauren,

The generic name for Requip is Ropinirole Hydrochloride. Medscape.com says it is a nonergot-derivative dopamine receptor agonist. The FDA in the U.S. has just approved Mirapex for Restless Legs Syndrome also. It is another Parkinson's drug. The generic name for Mirapex is Pramipexole Dihydrochloride. It is also a nonergot-derivative dopamine receptor agonist.

I wrote the RLS forum here recently to say that my sister has severe RLS, and had tried many meds including Requip. She couldn't tolerate Requip. A nurse practitioner recently prescribed a combination of Klonopin and Ambien and that night my sister slept 8 hours for the first time in months. The most she could sleep at one time lately was one and one-half hours. At the age of 77, she was going downhill fast.
Traveler
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  #6  
Old 12-13-2006, 05:16 PM
Traveler Traveler is offline
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Default Sister doing better

My sister with severe Restless Legs Syndrome reports that she is sleeping again after starting a prescription of Ambien and Klonopin. In addition, about a month ago I gave her a bottle of Methyl B 12 because she was having numbness and tingling in her hand and foot. She called this week and said the numbness and tingling are gone. She sounds like a different person and is praising God (and of course the people in her life) for being able to sleep and to be rid of these annoying sensations. Thank you, Rose and others who told me about this several months ago. I too had numbness and tingling and started the methyl B12 and within a few weeks, it was better. I have found that the numbness returns quite quickly if I don't take it.

Can anyone tell me if B-complex is available in a liquid or chewable form? I have so much trouble swallowing them and as a result, I don't take them. (I have Parkinson's also.)

Traveler
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  #7  
Old 01-30-2007, 03:36 PM
jordal jordal is offline
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Default

i have the same thumping problem i also get achy. i often use earplugs to sleep but that dosnt help thumping... not all the time but more and more frequent lately.... i have aneurysm, fibro, and other issues also.... im also on amitriptilyne but i can sleep all day and night if i could. i wake at 7 get kids ready and to school go home asleep @ 10 wake at 245 to pick kids up from school awake til about 10 again and all over. they said i stop breathing when sleeping and dont get deep sleep? not sure what all that means but i tired all the time. if u find the suggestions helped let me know... drs are not dealing with anything now till aneurysm clipped. good luck... sweet dreams... jordal
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Old 02-12-2007, 10:20 AM
Lauren88 Lauren88 is offline
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Default

Hey jordal thanks for your reply - it's good to know I'm not the only one! Oi have tried using earplugs because I also have intermittent tinnitus but I don't like wearing them to sleep because it makes the pulsating worse, as if there is a pressure in my head. How much amitriptyline do you take? I take 40mg. Have you had a diagnosis of what your pulsating is? Nobody knows with me I hope your aneurysm clipping goes OK with minimal pain and you recover quickly!

Take care
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Hi I'm Lauren from the UK. I have CP and hydrocephalus (done the gauntlet, 1 shunt, 2 shunts, back to 1 shunt and now an ETV) as a result of an IVH following birth at 26 weeks gestation. Both traumatic at times but they make me who I am. Reasonably stable now except for long-term trouble sleeping due to pulsating sensation when lying down but taking one day at a time and doing well.
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  #9  
Old 08-01-2007, 10:48 PM
UKPilgrim UKPilgrim is offline
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Default Lauren

Does the pulsing / throbing change, or is it constant ??

I have also been for MRI scans, which have not revealed anything, except a pineal cyst, so I was told that it was stress !!!!!

As the diagonisis came from a professor of neurology, in Central London, I decided to investigate alternative treatments.

I visited a cranial osteopath, Martin Pidd, in Golders Green, later the same day, and after taking my medical history which included having an accident whilst attached to a parachute some 25 years ago, he performed some manipulations on my body, including stretching exercises, to my neck, and cranial work on my sinuses / skull.

I left the surgery feeling better, and without the pulsing / throbbing sensation to my head.

Therefore, I would suggest to anyone that they seek the advice of a cranial ostepath. It may not solve the problem, but it may provide some relief.

As I have now been referred to a speech Therapist, by another neurologists, and after a conversation wiith the speech therapist, she informed me that she thought the problem was a trapped nerve, rather then anything else.

From conversation with other patients at Papworth Hospital, Cambridge, where I have been provided with a CPAP (continuous positive airway pressure) to treat obstructive sleep apnea, it would appear that a lot of the patients have suffered from head type injuries, ie whiplash, etc.

I hope that the above helps.
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  #10  
Old 01-13-2008, 11:18 AM
Lauren88 Lauren88 is offline
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Default

UKPilgrim - THANK YOU for your reply - as with Jordal it is so good to hear I'm not the only one who experiences this! Sometimes it is so bad it feels like a timebomb in my head!

In answer to your question, the pulsating does vary - it's mostly always there when I'm lying down, but the pattern of thumping changes sometimes and also sometimes I will get it when upright for example if I have walked upstairs or a distance, but I'm not out of breath or anything. It affects both sides of my head but is worst when lying on my left hand side and sometimes I still get it when lying on my back but it tends to be less severe. It's so unpredictable though

I have had MRIs but nothing has shown up. When I was getting discharged from my neurologist he said there was calcification on my brain and mentioned something like AVM but no detail and haven't heard anything since.

How did you go about finding a cranial osteopath? I'm interested in anything non-invasive that might help, especially since I am sleeping badly at the moment - a combination of worse pulsating and living in halls of residence

Thanks again
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Hi I'm Lauren from the UK. I have CP and hydrocephalus (done the gauntlet, 1 shunt, 2 shunts, back to 1 shunt and now an ETV) as a result of an IVH following birth at 26 weeks gestation. Both traumatic at times but they make me who I am. Reasonably stable now except for long-term trouble sleeping due to pulsating sensation when lying down but taking one day at a time and doing well.
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