Inclined Bed Therapy (IBT) Feedback Request

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

Re: Inclined Bed Therapy (IBT) Feedback Request

Postby AndrewKFletcher » Fri Jul 27, 2012 3:20 am

Link to this post 01 Jul

Haven't been here for a long while, but never forgot about this site or its importance!

It's been more than two years of IBT for me with no other forms of 'treatment'. I have had zero relapses and am much steadier on my feet, have normal heat tolerance, and no longer worry about becoming 'overheated' when exercising.

In fact, I have figured out that as long as I am doing some form of exercise that is fairly vertical, I'm ok. This has been heartbreaking for me as a wannabe masters swimmer, who swam in high school and college, but if I want to feel that "OMG, my head is going to explode from the pressure of too much blood flow to it with no escape" feeling, all I have to do is swim four or five laps without stopping. It's amazing that no other form of exercise gives me that terrifying sensation. I attribute it to being flat while swimming. I tried once again about four months ago, and never again. I'm terrified of having a stroke. I wonder if anyone else has ever noticed this?

So walking and biking, it is.

I'm sorry I never did all the measurements and regular check-ins that would have been really helpful here, but I just never made the time. I am thrilled with my results from IBT! I wish I could figure out how to get the letters MS out of my medical records as I now know that vascular issues have been my problem and my immune system works fine. I had seriously considered having the angioplasty surgery, but no longer feel a rush to do so. It would be great to sleep flat again, but having surgery in order to be able to do so? I think not.

I am very grateful I learned of this therapy. I feel it has really worked for me and prevented further problems of progression. When I speak to others who have MS, I am always surprised at how resistant some can be to the idea of this simple, non-invasive therapy... Why NOT try it?

Anyway, husband's complaints not withstanding, I loved my raised bed!
Lisa

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Re: Inclined Bed Therapy (IBT) Feedback Request

Postby 1eye » Fri Jul 27, 2012 4:42 am

AndrewKFletcher wrote:Link to this post 01 Jul

Haven't been here for a long while, but never forgot about this site or its importance!

It's been more than two years of IBT for me with no other forms of 'treatment'. I have had zero relapses and am much steadier on my feet, have normal heat tolerance, and no longer worry about becoming 'overheated' when exercising.



I don't worry about it either because my exercise is done either in air-conditioning, or when outside, in the wind. Heat is still a problem if I go for long stretches without shade, but I can manage, as long as my neck cooler lasts. I get inordinately worried when I am led over unfamiliar paths and find there is no shade.


In fact, I have figured out that as long as I am doing some form of exercise that is fairly vertical, I'm ok. This has been heartbreaking for me as a wannabe masters swimmer, who swam in high school and college, but if I want to feel that "OMG, my head is going to explode from the pressure of too much blood flow to it with no escape" feeling, all I have to do is swim four or five laps without stopping. It's amazing that no other form of exercise gives me that terrifying sensation. I attribute it to being flat while swimming. I tried once again about four months ago, and never again. I'm terrified of having a stroke. I wonder if anyone else has ever noticed this?



I can't swim. Haven't been able to for years. Same experience when I tried to skate. It's my balance. In water, I lose the sense of which way is up. I think I would do will with the tongue-hat or it's descendant, but so far no-one has offered, Maybe my loss of up is fear-related and I am afraid of my head exploding, but I don't think so. I think my wife is more concerned than I, when I almost drown.

So walking and biking, it is.

Trikeing is great, with toe clips for my drop-foot. If I could only walk.
I'm sorry I never did all the measurements and regular check-ins that would have been really helpful here, but I just never made the time. I am thrilled with my results from IBT! I wish I could figure out how to get the letters MS out of my medical records as I now know that vascular issues have been my problem and my immune system works fine.

If only. I have had maybe 2 colds in the last five years, no flu, mostly minor skin infections, from dirt, and no throat infections. I take Amantadine in winter.
I had seriously considered having the angioplasty surgery, but no longer feel a rush to do so. It would be great to sleep flat again, but having surgery in order to be able to do so? I think not.
The benefits can be amazing. If only I'd had it ten years ago! Don't wait until your walking is gone!
Anyway, husband's complaints not withstanding, I loved my raised bed!
Lisa

I would, but my wife hates it. Who wears the dress in my family? :smile:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Inclined Bed Therapy (IBT) Feedback Request

Postby tiltawhirl » Fri Jul 27, 2012 6:42 am

1eye wrote:I would, but my wife hates it. Who wears the dress in my family? :smile:


I hear flowery prints are coming back! :lol:

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: Inclined Bed Therapy (IBT) Feedback Request

Postby williamducey » Sat Jul 28, 2012 6:07 pm

AndrewKFletcher wrote:
As of last June I have been sleeping in an inclined bed (30 degrees avg)every night. It has been almost a year. I have over that time regained my continence (don't wear diapers any-more) my sense of balance has been regained. I do not twitch any longer. I have an MRI that I will pick up Monday. It will have conclusive info. I have worked on this for a year. It will be a form of therapy for some with "MS"


Hi William, thanks for posting your update. This is indeed excellent news, can you share with us the results from your MRI?


Kind regards



My last MRI showed no active lesions, no new atrophy..but did show evidence of a small increase in so lesions.This however was based on comparison to my last t Mikes MRI 2+ yrs. I could not get my doc to compare to my most recent MRI (1 yr ago). I am starting to use a walker occasionally and have more energy almost every day it seems.
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Re: Inclined Bed Therapy (IBT) Feedback Request

Postby AndrewKFletcher » Mon Jul 30, 2012 2:30 am

Hi William,

thank you, your MRI results are interesting and would be even more interesting compared to the last MRI scan. It may be worth writing to your GP and ask again for a comparison? Nevertheless, your report reflects the same pattern that Terri Harrison reported, she also had no active lesions and no new atrophy, she no longer considers herself to have multiple sclerosis and has remained stable since 1998.

From New Pathways IBT article:
Terri Harrison
I truly have had a wonderful experience sleeping inclined since February 1998 when I was diagnosed with Multiple Sclerosis. At that time I was looking for information and ran into someone with similar experiences to mine - I found someone who had some pain and other symptoms. She was recommending sleeping inclined and put me in touch with Andrew Fletcher.

What Andrew offered involved no pain or money (my kind of therapy!!) I used a couple of large books to prop on the frame of my bed (how easy!!) The very first night, the symptoms subsided. That was amazing - but my husband complained about sliding down. I thought - no problem, it worked. I removed the books and slept flat again. The pain came right back! I suggested my husband could sleep on the couch or get over it.

We have both been sleeping inclined ever since. My neurologist asks me during my annual visit how I'm doing. I've had subsequent MRI's and there is no sign that I'm progressing negatively. The doctor reminds me that MS isn't supposed to get better (but I appear to be!)

Beginning in a few days I'm going to start toward a degree in nursing. My doctor is encouraging my studies - he doesn't foresee any problems with this rather serious endeavour. The MS is not a problem for me. I try to stay in touch with my body and take it seriously if it tells me I'm tired or too hot or cold. The best thing for these "problems" is to go to bed and get some rest. It has never failed to restore me to where I was before I was ever diagnosed with this "debilitating" disease!


From New Pathways Post Bag: Inclined Bed Therapy = No
Loo Trips At Night!
Dear New Pathways,
A couple of weeks ago I started
using Inclined Bed Therapy, having
seen it in New Pathways. I’ve got
an adjustable bed so have been
experimenting with height and
about 6 inches seems to work
best for me.
I’ve had a couple of nights with
NO toilet trips, my energy levels
have gone through the roof and I
haven’t had to sleep during
the day!
I would recommend it.
Vanessa Earle
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Re: Inclined Bed Therapy (IBT) Feedback Request

Postby AndrewKFletcher » Thu Dec 13, 2012 10:26 am

http://www.esa.int/Our_Activities/Human ... _some_rest

Checking bed angle in bedrest study
Checking bed angle
12 November 2012

Why are 12 volunteers about to spend 21 days in bed, lying with their heads tilted below the horizontal? Their experience will help to understand and address changes in astronauts’ bodies in space as well as in bedridden people on Earth.

Far from being a period of rest and relaxation, the volunteers in this bedrest study will undergo regular and intensive daily activities, including tests and examinations at the French institute for space medicine and physiology, MEDES.

They will not be allowed to get up, not even once, for a breath of fresh air, a change of scenery, a shower or to use the toilet.

The volunteers in this study are expected to repeat their 21-day ordeal twice in the space of one year.

As we age, our bodies lose bone density and muscle strength. Astronauts in space suffer similar changes but at a much faster rate than on Earth.

Finding ways to combat this process is important to space agencies, hospital patients and everyone who plans on growing old.
Hide continue

Bedrest psychological test
Bedrest

In the name of scientific progress, the participants will be scientifically scrutinised to see how they adapt to staying in bed for long periods.

The research is part of a wide range of international bedrest studies that aim to develop and test countermeasures to the challenges of living in space, ageing and long periods of immobilisation after illness.

This study is co-funded by French national space agency CNES and is part of ELIPS, the European Programme for Life and Physical Sciences.

Putting people in bed lying with their heads 6° below the horizontal for long periods causes their bodies to react in similar ways to being weightless, but is cheaper and safer than sending them into space.

In this study the 12 volunteers are divided into three groups to test a set of countermeasures to muscle and bone loss.

The control group will spend 21 days in bed without any countermeasures, while a second group follows a schedule using resistive and vibrating exercise machines.

The last group will use the exercise machines and eat nutritional supplements of whey protein – a common supplement used by bodybuilders to train their muscles.
Exercise machine

Although the properties of whey protein are well known to bodybuilders, will the protein help to maintain muscle strength without hours spent in the gym?

The healthy volunteers will participate in all the regimes one after the other over the course of the entire experiment of more than a year.

After the first 21-day session starting today, they will return to the clinic at MEDES in Toulouse, France, for another session and once more in 2013 for a final session.

The volunteers will have four months between each bedrest session to recuperate, get some real rest and appreciate getting out of bed in the morning.
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6 degrees of Inclination "Upside down of course"

Postby AndrewKFletcher » Thu Dec 13, 2012 10:28 am

http://www.esa.int/Our_Activities/Human ... nclination


Bedrest volunteer on resistive vibrating exercise machine
Ready for exercise
4 December 2012

Stay in a tilted bed for weeks with your head at the lower end and your body starts to change as if it were ageing prematurely or living in space. Twelve volunteers in ESA’s bedrest study are enduring the testing experience.

The ‘pillownauts’ have to stay in a bed for 21 days that is inclined at 6º. The rule is that at least one shoulder and their hips must be in contact with the bed at all times, even when they eat, wash and go to the toilet.
Bedrest exercise on a resistive vibration machine
Bedrest exercise

As their muscles diminish – one participant has lost almost four kg – medical staff at the study clinic MEDES in Toulouse, France monitor them closely.

“We want to find the best possible solution to counteract the effects of staying in space or being inactive when muscles and bones are not used regularly,” explains ESA specialist Vittorio Cotronei.

Two groups of volunteers follow a short but intense exercise routine on a vibrating plate that exercises leg muscles as they absorb the up-and-down motion. Straps pull them onto the plates with a force equivalent to 100–200 kg while the pillownauts perform upside-down leg-presses for a few minutes.

The exercise routine is repeated every three days. “It is not a lot of time but you definitely feel it,” says Eddy, from the exercise group.

One group is doing the exercise and taking protein supplements just as bodybuilders eat to increase their muscles. The third, control, group is being monitored to compare results.
Bedrest staff checks on volunteer
Checking fluids

Regular scans, blood tests, muscle biopsies, backaches and endless questionnaires can be a chore but the participants are in good spirits.

“Some people think of us as guinea pigs, but we know exactly what we are doing and are far from being laboratory animals,” says Marc from the exercise and nutrition group.

The pillownauts have access to the Internet and all agree that social contact is keeping them motivated.

Rooms are shared by two volunteers and procedures are discussed between all volunteers in group chats. The experiments are run by doctors from France, Germany and Italy, Austria and Canada.
Bedrest volunteers eating a snack
Bedrest snack

“The medical staff are passionate about their experiments and very friendly,” says Marc. “We are in regular contact with family and friends as well as our bedridden colleagues and this keeps us going.”

The study is part of ELIPS, the European Programme for Life and Physical Sciences and co-funded by the French national space agency, CNES.

Nicolas, from the control group, advises everyone to volunteer for future studies: “Bedrest is an opportunity to learn more about yourself and a great way to participate in humankind’s space adventure.”

Eddy adds, “The research results will be used in everyday life and that makes me proud.”

The volunteers are looking forward to the end of the year, when they can leave their sloping beds after 21 days for four months of rehabilitation. They will return for another two 21-day stints, each time taking part in another of the three groups.
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