Inclined Bed Therapy

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

Postby AndrewKFletcher » Sat Apr 10, 2010 12:39 am

Hi Karl

Thanks for adding your experiences to Thisisms

If you can add your tracking Journal to the IBT forum, using the template provided here: http://www.inclinedbedtherapy.com it will be even more helpful.

Cheers

Andrew
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Postby homefront » Wed Apr 21, 2010 1:55 am

Andrew

sorry to be a pain, but it is not always easy when full time job and looking after my wife (ppms), to get time to search through everything.

Do you recall from journals or threads on TIMS, anyone with Primary Progressive MS showing inprovements from IBT?

This would be good to give my wife encouragement.

Thanks & Best Regards
Peter

wife dx ppms 2007
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Spread the word about Inclined Bed Therapy for P W MS

Postby AndrewKFletcher » Thu Apr 22, 2010 12:11 am

homefront

Have sent you a pm in response to yours to save going over the same ground here again.


The answer to your questions is yes IBT has been shown to work with PPMS and SPMS

Patches shared results on tims so sent you the post in a pm.

I agree with you that the thread has become too difficult for people to follow everyone’s progress.

This is why I set up the new forum on http://www.inclinedbedtherapy.com
We have begun to see some reports there but no where near the number of people who have been reporting results on thisisms..

Unfortunately also many who have reported on here have not mentioned which form of ms they have so it makes it very difficult to find their posts.

So for ease of searching could everyone at least add either RRMS PPMS or SPMS and IBT to their subject headers on each of their posts? [b]

This will at least help people to use the search engine and locate posts from their particular diagnosis of ms.

We also have a huge amount of posts from the two previous pilot studies in a thread on the new IBT forum, the results from which have now been validated by the repeated success on thisisms.

[b]I'm not asking anyone to abandon thisism, just to place a copy of his or her posts negative or positive on the new forum.


I can even help to do this by helping to copy the posts once a thread has been started in the IBT tracking Forum. I can make anyone a moderator also so they can help me to compile the data.

When people ask me for help, I always try to give 199%

Sadly this is seldom the case when I ask for a little help with this important research, hence 17 years of my life has elapsed helping others and I am not sure I can afford the time to continue much longer.

:idea: If everyone using inclined bed therapy would help to get the word out to people with ms and spinal cord injury my work would be completed.

It is clear that a controlled study is not going to be forthcoming from the medical profession in the foreseeable future so "People Power" and word of mouth is the only way forward and it sounds so much better coming from the mouths of people with ms who have experienced the predictable results using it.

:idea: Perhaps some of you could contact local and National newspapers, ms groups, charities, television or radio stations to let them know what has happened to you after you propped your bed up?

I really need some help here people.
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Postby Wonderfulworld » Sat Apr 24, 2010 11:54 am

Andrew
I'm really sorry to tell you this but I've used the IBT for 2 months now and I am not improving at all. I did feel better for about 2-3 weeks but I'm now actually feeling worse. I am gradually getting more and more tired, my speech has started slurring again and my right leg has got weaker. I'm disappointed - I really thought IBT might work but it's not for me. I do believe you are a sincere man who is very motivated to help others but in my case, it doesn't seem to be helping.
:(
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby AndrewKFletcher » Sun Apr 25, 2010 12:18 am

Wonderfulworld wrote:Andrew
I'm really sorry to tell you this but I've used the IBT for 2 months now and I am not improving at all. I did feel better for about 2-3 weeks but I'm now actually feeling worse. I am gradually getting more and more tired, my speech has started slurring again and my right leg has got weaker. I'm disappointed - I really thought IBT might work but it's not for me. I do believe you are a sincere man who is very motivated to help others but in my case, it doesn't seem to be helping.
:(


No need to say your sorry for not improving, we need to understand why and you can help me with this also.
Can we learn a little more about the area you live, climate, humidity, valley,hillside etc, no need for an exact location, just describe the area.

Also describe the type of housing. Is it damp? does it have air conditioning? Do uyou use a dehumidifier?

How long have you had your condition and which form of ms lable have you been given.

How long since your last downturn in helath before tilting the bed?

It is also entirely possible to have a relapse while on IBT and others fortunately have provided us with insight into the differences between sleeping flat and horizontal while enduring and recovering from a relapse.

It is also possible to get a viral infection which could cause a significant downturn.

There have been others that reported a worsening prior to improvements around the same 2 month period.

By all means put your bed flat to see if it is IBT that is causing these new problems, if it is then your helath should improve within a short space of time sleeping flat.

If not then we need to figure out what is causing these problems.

I know I have said this time and time again, but we need to be able to follow everyones progress more easily than having scattered posts in huge threads. :wink:
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Postby Wonderfulworld » Sun Apr 25, 2010 4:08 am

Hi Andrew
I was thinking over things last night and I have had a few viruses and infections in the last 6 weeks. I had a flu-like virus first, then my son got a vomiting bug and I got it, then I had a chest infection. It's been a rough six weeks! So it is entirely possible that the worsening of my MS is due to this awful run of infections and not the IBD.

I've decided to continue with IBD for the meantime and will post again in a month with how I am then.

Can we learn a little more about the area you live, climate, humidity, valley,hillside etc, no need for an exact location, just describe the area.

Also describe the type of housing. Is it damp? does it have air conditioning? Do uyou use a dehumidifier?

How long have you had your condition and which form of ms lable have you been given.

How long since your last downturn in helath before tilting the bed?


I live in a Suburban area in Ireland, mild climate - few extremes, low humidity, on a plain. Housing not damp, no need for air-con as not hot - house nice and cool. No dehumidifier needed either. MS 11+ yrs, RR-MS officially but I suspect it is moving towards SPMS in the last year. Last major relapse 1.5 yr ago but minor ones since.

I think my downturn is probably from the infections. I'll hang in there! :wink:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby pmouse » Wed Apr 28, 2010 5:26 am

Hi Andrew

I really intend very soon to announce my IBT improvements on your forum.

Major things:
- always warm limbs
- much more energy
- much easier to stand out of bed
- better sleep, vivid dreams
- improved walking (longer distances with walking sticks)
- no need for toilet during night), maybe once a night

Maybe I forgot some but me and my wife intend to sleep inclined even after CCSVI procedure.

Thank you Andrew
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Postby Cece » Wed Apr 28, 2010 10:36 am

Just a follow-up to encourage anyone to try IBT if they have an m.s. diagnosis...I have been doing it since January and I too feel better in the mornings. This is one of the very few things I've tried that have made a difference with this disease...not a radical difference, but still a difference.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Wonderfulworld » Thu Apr 29, 2010 6:46 am

Hi Andrew
I've noticed something that's happened since I started IBD - my heartbeat is thumping in my ear (deaf in the other one!) and my heart feels like it's pumping hard. Is this normal?
thanks
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Muscle density, heart beat and Inclined Bed therapy

Postby AndrewKFletcher » Thu Apr 29, 2010 7:28 am

Wonderfulworld wrote:Hi Andrew
I've noticed something that's happened since I started IBD - my heartbeat is thumping in my ear (deaf in the other one!) and my heart feels like it's pumping hard. Is this normal?
thanks


Muscular atrophy from sleeping flat for many years takes place and this also affects the heart which is a muscle after all.

When sleeping on an inclined bed the heart muscle becomes stronger along with muscles in the rest of the body. This became apparent when a girl with cerebral palsy who had never walked up to the age of 12 not only walked but began to exhibit muscle mass that her parents became concerned about saying her legs looked far too masculin.

This confirmed the increased circulation was having a long term beneficial effect on the muscles.

Would I be right in thinking you sleep on your right hand side when you hear this strong heart beat and it goes away when sleeping on the left side?

Also you should get a check up to make sure your blood pressure and heart is as it should be.
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Postby Wonderfulworld » Thu Apr 29, 2010 7:31 am

Would I be right in thinking you sleep on your right hand side when you hear this strong heart beat and it goes away when sleeping on the left side?

No Andrew it's the opposite. It's when I lie on my left side I hear it. My right side is deaf to up to 80 decibels.

I will be talking to my GP very soon as my report from the CCSVI Doppler scan came through and it needs analysis. Will get him to check out heart/blood pressure too at that visit - normally I had a tendency to low blood pressure in the past.

If I gained super muscles whilst sleeping I wouldn't be complaining :lol: :lol: :lol:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Thanks PMouse

Postby AndrewKFletcher » Thu Apr 29, 2010 10:19 am

pmouse wrote:Hi Andrew

I really intend very soon to announce my IBT improvements on your forum.

Major things:
- always warm limbs
- much more energy
- much easier to stand out of bed
- better sleep, vivid dreams
- improved walking (longer distances with walking sticks)
- no need for toilet during night), maybe once a night

Maybe I forgot some but me and my wife intend to sleep inclined even after CCSVI procedure.

Thank you Andrew


If you need some help adding the template I can do that for you.
Be sure to edit in your wordprocessor each time you update your journal as this prevents you from having to retype everything if it fails to post first time. I usually hit the post button again if it's not responding and it works fine.
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Postby AndrewKFletcher » Thu Apr 29, 2010 10:21 am

Cece:

Thanks for the update
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MSRC New Pathways Article

Postby AndrewKFletcher » Thu Apr 29, 2010 10:24 am

Busy helping with the New Pathways IBT article.

Ian Cook has asked if more people would be interested in helping with the article by adding your own experiences using IBT?

Andrew
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Thanks PMouse for posting your Journal

Postby AndrewKFletcher » Fri Apr 30, 2010 12:43 am

Was delighted to read your journal on the IBT forum.

Fantastic progress so far and considering your Primary Progressive ms diagnosis it is even more remarkable. :)

Over the months you should continue a slow but steady improvement. You may even revert back to relapsing remitting and yses this has been reported by others over the years.

It makes sense that older symptoms should surface from time to time if we are seeing a reversal of PPms.

Some may choose to believe this is not possible but at least you and I and a few others know this to be the case now and thanks to your journal more people will learn from your experience what tilting the bed can achieve for people with ms.

The forum is starting to look interesting already and over time more people will be adding their own experiences.

Hopefully once the New Pathways article goes out we will see a lot more interest in the site.

Thanks again Pmouse
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