Inclined Bed Therapy

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

1 yr out on IBT

Postby kc » Thu Jan 20, 2011 9:18 pm

I am one yr out from ibt and 6 months out angio. I continue to sleep inclined and will for the rest of my life. Oh oh oh are things so much better. In every way fatigue is 95percent gone, spasms 85% gone.

I am working on my muscles to improve them. It is happening slowly.
Last summer after angio I went into my pool and could barely get out of it. I was alone and was trying not to get scared. I was convinced I had restenosed. But I didn't/. This morning I decide to take a nice hot bath and filled that sucker right up. I was ok while I was in there but I had a harder time that I should have getting out. And for the rest of the day I had little energy and felt kinda outside of myself. These are two very distinct instances with are making me wonder if I can handle. I don't have a problem with just taking showers and never using the pool.

I have improved to greatly over the 6 months but these two water things knocked me right down on my ass.

I just cannot figure it out. any one else go thru this?

kc :oops:
User avatar
kc
Family Elder
 
Posts: 116
Joined: Sun Jul 03, 2005 3:00 pm

Advertisement

Postby zap » Thu Jan 20, 2011 10:08 pm

I've been sleeping inclined for many months now, and I gotta say - I recommend it. I used to wake up frequently with my head all pressurized and horrid feeling. I never do now.
User avatar
zap
Family Elder
 
Posts: 326
Joined: Mon Apr 20, 2009 3:00 pm

blood temp

Postby 1eye » Thu Jan 20, 2011 10:16 pm

I am very interested in this whole problem. To me, it is basic to 'MS'. I have a limited air temperature range in which I am comfortable. Water temperature seems different. Showers are better, or I would have to take sponge baths. It is the responsiveness of the temperature control in the shower. I have time before I fall down, to make it colder, and the temperature of the shower has relatively little thermal inertia. I have a very specific water temperature above which I dare not go.

I think you are more immersed in a bath or a pool. But it is probably the mass of the water that makes the most difference.

I don't know if it is the thyroid temperature control or not. I get good results by keeping my neck cool. But blood temperature makes the most sense to me. Few studies of viscosity (or is it no studies) ever omit temperature because it is so dependent on it. I think there may be a viscosity change that happens at a unique temperature, above which the blood is thin enough to allow worse reflux. I cannot bend my head down when I am in the shower, as I will fall. Once down, with hot water pouring on me, I cannot get up. Would be afraid to go in a warm pool without a life jacket.

I wish this could be further elucidated. Somebody said it is the body's way of making blood stay inside organs when the skin is cold, and go to the skin to prevent organs from overheating. But this does not happen to me at any temperature extremes. It is at about 73 F for me, air temperature. 74 is intolerable without neck cooling.

Maybe it's easier for thinner blood to get through flaky valves. I don't know and I wish I did.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2895
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby mazza » Thu Jan 20, 2011 10:53 pm

It's been a year since I started sleeping inclined and the most noticable improvement has been in leg spasms when going to sleep. It doesn't happen anymore. I also feel less sinusy in the morning. As IBT is my only "therapy" apart from a Swank type diet, I'm sticking with it.

Low temperature is an issue for me if I shiver when I walk. The muscles in my weaker left leg do not work very well until I stop shivering. I only have showers so don't know about high temperatures in a bath. Hot weather doesn't seem to impact on me.
User avatar
mazza
Family Member
 
Posts: 25
Joined: Wed Nov 11, 2009 4:00 pm
Location: Sydney, Australia

How much longer before a controlled IBT study is conducted?

Postby AndrewKFletcher » Tue Feb 15, 2011 4:41 am

Thank you so much for keeping us up to date with your experiences using IBT.

To move forward we need a PHD student to conduct a simple 4 week study on changes in circulation, heart rate and respiration rate using IBT.

Not a lot to ask is it?

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Postby Perky » Tue Feb 15, 2011 6:18 am

I had my bed inclined for several months, through pieces of wood that my husband fixed to the bed, but got him to take them off around 3 months ago as I didn't feel it was working anymore, and I wanted a fancy headboard that didn't work with the inclined bed, and also I slept on a flat bed on holiday and felt much better while I was there.

However, I think I've felt worse since going flat again and I want to try inclined therapy again. My husband is not happy about fixing the pieces of wood back on though as it was very difficult last time and he suffers with a bad back...I would like to try another way of raising the bed, perhaps by some kind of caster risers...preferably something easy and not so permanent as nailing wood to the bed.

Can anyone recommend something I can buy to do this? (bear in mind I am in the UK :) )
User avatar
Perky
Family Member
 
Posts: 39
Joined: Thu Jan 21, 2010 4:00 pm
Location: Black Country, UK

Postby nagsy » Tue Feb 15, 2011 8:50 am

Hello all,

I inclined our bed for my wife to 2.5 inches for about 4 weeks and then to 5 inches in Jan 2010. There was an immediate effect on my wifes trips to the loo at night. Previously she would go several times to the loo and most times get to the loo and not want to go. But as soon as we started IBT these trips to the loo stopped. She only went to the loo once or twice and sometimes not at all. We both got much better sleep - my feet felt as though they swelled for about 3 or 4 nights but after that I was fine. At that time my wifes leg spasms were also much worse and these also calmed down somewhat.

In June my wife had her op for CCSVI and has been doing much better. However over the last month or so she gets a cramp like pain in her leg at night every other day. A couple of weeks ago we went on holiday and slept on a flat bed and my wife had no cramp-like pain in her leg. When we got back to the UK we slept on our inclined bed for 3 nights and each night the pain re-occured. It has now been more than 7 nights that we have been sleeping on a flat bed and she does not get any pain any more.

Just thought I'd let you know.

Cheers,

Pinda
User avatar
nagsy
Family Member
 
Posts: 26
Joined: Thu Sep 24, 2009 3:00 pm

Postby nagsy » Tue Feb 15, 2011 9:04 am

Perky wrote:Can anyone recommend something I can buy to do this? (bear in mind I am in the UK :) )


A good find by fellow MS'er (on FB) David Leven was the following:

Plastic Bed Raisers
<shortened url>

Cheers,

Pinda
User avatar
nagsy
Family Member
 
Posts: 26
Joined: Thu Sep 24, 2009 3:00 pm

Postby Vivianne766 » Tue Feb 15, 2011 1:50 pm

nagsy wrote:
Perky wrote:Can anyone recommend something I can buy to do this? (bear in mind I am in the UK :) )


A good find by fellow MS'er (on FB) David Leven was the following:

Plastic Bed Raisers
<shortened url>

Cheers,

Pinda


wow.
Where can I find a similar product in US ?
User avatar
Vivianne766
Family Elder
 
Posts: 164
Joined: Sun Mar 07, 2010 4:00 pm

Postby tzootsi » Tue Feb 15, 2011 5:53 pm

Vivianne766 wrote:
nagsy wrote:
Perky wrote:Can anyone recommend something I can buy to do this? (bear in mind I am in the UK :) )


A good find by fellow MS'er (on FB) David Leven was the following:

Plastic Bed Raisers
<shortened url>

Cheers,

Pinda



wow.
Where can I find a similar product in US ?



I would think you could just use some blocks of wood, or a few books.
User avatar
tzootsi
Family Elder
 
Posts: 369
Joined: Sun Nov 22, 2009 4:00 pm

Postby dlb » Thu Feb 17, 2011 10:29 am

Vivianne,

I think they can be purchased at WalMart. My son has found some at Home Sense in Canada as well. They are really good to take for traveling as well. I miss my inclined bed if I'm away from home! We have used those aluminum jack stands (automotive) as well at my son's house. One has to be imaginative!! LOL
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

IBT verses flat bed

Postby AndrewKFletcher » Thu Feb 17, 2011 11:26 am

Pinda


Thanks for the update.

Regarding cramp like pain you mentioned.

1. Potassium levels could be too low. Easy to test by eating a baked potato or banana to see if it is potassium.

2. On an inclined bed one tends to let your legs stretch out. The opposite tends to be the case on a flat bed as many people raise their legs up, rather than stretching out. This may be due to body temperature being lower when sleeping flat so curling up to keep warmer is often practised.

Cramp might become more frequent if tendons are stretched by the inclined bed. Logically if a wheelchair is used then a person curls up in bed, the tendons tend to adapt to what is now a "normal posture"

It's odd that the cramp came after surgery, presumably you slept on a flat bed at the place the surgery was performed and the cramp was not there before?

Interesting post

Thanks

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Re: IBT verses flat bed

Postby nagsy » Fri Feb 18, 2011 4:47 am

AndrewKFletcher wrote:It's odd that the cramp came after surgery, presumably you slept on a flat bed at the place the surgery was performed and the cramp was not there before?


Hi Andrew,

The cramp was intermittant pre-IBT and pre-CCSVI as well.

Last June on day 2 after the CCSVI operation the cramp/pain happended with a vengence, Sandi was absolutley screaming for 20 minutes - this was when we were on a flat bed in the hotel in Poland. I then got loads of pillows and propped her up for the remaining 4 days we were in Poland and she was fine. Having got back to the UK we remained on a inclined bed with no issues until about November. And its now that the cramp/pain appears to have stopped since we are on a flat bed again.

Very weird hey?

Cheers,

Pinda
User avatar
nagsy
Family Member
 
Posts: 26
Joined: Thu Sep 24, 2009 3:00 pm

This might be a good sign of nerve regeneration

Postby AndrewKFletcher » Fri Feb 18, 2011 5:11 am

Many people using IBT for ms have reported shooting / stabbing pains, like electrical pains which are not always in the same place. This appears to be a sign that nerve pathways are opening up again and could indicate significant return of function / sensitivity is imminent.

Stay with the IBT and see what happens when the pains subside, could prove very interesting.

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

IS IBT useful following Liberation Surgery?

Postby AndrewKFletcher » Mon Feb 21, 2011 2:24 am

99.99999% of all stenosis took place using a flat bed.

Inclined bed therapy has been shown to reverse ms symptoms without surgery.

So IBT should be safe to use after surgery. Angioplasty from what I have learned causes valves inside the veins to be damaged as the endoscope is inserted through them. This would certainly have some adverse affects.

The ballooning also damages the vein walls and would IMO make them more susceptible to re-stenosis in the future. Think about trying to blow a brand new balloon up and how much resistance is there. Then release the air out and blow the same balloon up again, we have all done it and remember how much easier it is to re-inflate a balloon rather than inflating a new balloon. The elasticity of the veins must be compromised in the same manor as the balloon analogy and we don't really know for sure that the body can restore the elasticity in the damaged veins over time.

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service