Inclined Bed Therapy

[Wilfy]

Wow its so nice to see all these people not only angling their beds but also giving continuous reports of their experiences!

All a wealth of information and very useful

Thankyou all for helping my dad get the news out about his discovery

Sleeping at an incline is the way of the future

[NewHope]

Hello, dear friends!

I'd like to to report here that I tried inclined bed therapy last night even though I was pessimistic about it and today I am very happy because I am MUCH better! Fist of all, I didn't go to the bathroom at all last night. Usually I go around 1-2 times. Second, in the morning my usual morning stiffness was much less and I didn't have the "jumpiness"/tremor in my legs that I started having in the past few weeks. My stretching exercises were easier to do! Also, for more than a month I had stopped doing my regular unaided walks of 100-300 meters at home every morning. (During the rest of the day I use a walker.) Also for the past few weeks I was feeling tired and lacked the little strength I had before in the morning. I was afraid I am having another relapse. Well, today I walked 120 meters unaided in the morning and I still had plenty of strength left!!! I am doing better during the whole day! I am SO happy! That also shows me I must have CCSVI for which I was hoping very much! By the way, I am not even sure I did the inclined bed correctly because instead of inclining the whole king bed and bothering my husband I made an inclined surface on top of the mattress by using pillows and blankets and trying to have about 15 cm height of the head. My husband is so happy with my improvement that he wants to incline the whole bed during the weekend!
THANK YOU from the bottom of my heart to Andrew, Ericka and everyone who helped develop this great topic and helped this topic to always be on the first page so that every day when I was checking out the forum I was telling myself that I must try this! Indeed everyone must try inclined bed therapy!!!

[JoyIsMyStrength]

Wow, NewHope, that is awesome!!

Wilfy, way to be an advocate for your dad.

Pam

[Cece]

I need to reread this thread to understand more about IBT. When I bumped my bed up to three inches raised, I've been more comfortable sleeping and had several nights now of vivid dreaming. This is very unusual for me and seemed directly related to elevating the bed. So I am wondering what process is at work here! The elevated bed keeps the jugulars open at night so blood is better able to flow and drain from the head...so the brain functions better and dreams are able to occur?

I'll be bumping my bed up to four inches soon, no worries there.

[Wilfy]

Dad... a few questions!

this needs to be tested properly and i am sure there are lots of people on this web page who could help you and point you in the right direction

how can my dad get this trialed under strict medical conditions/controlled experiments/clinical trials and have the real evidence recorded? who can he apply to? who does he need to talk to? how does he go about getting this done?


someone out there must hold the answers

please help point my dad in the right direction!

[Algis]

My feet/legs pain disappeared this mornin, and so far I don't feel any pain there (already 1400). So; good evolution.

[Cece]

how can my dad get this trialed under strict medical conditions/controlled experiments/clinical trials and have the real evidence recorded? who can he apply to? who does he need to talk to? how does he go about getting this done?

These seem like the right questions, I wish I had the answers. He'd probably need to present the theory and convince a doctor-researcher type to spearhead it. Or enroll in graduate school and work on this as the thesis/research project under guidance. He could try applying for grants, landing one, and hiring someone with the skills to pull a study together. None of this sounds easy or likely, it's just off the top of my head.

Study design could be easy: a control group of people with m.s. but no elevated bed, a control group of healthy people with no elevated bed, a control group of healthy people with an elevated bed, and the test group of people with m.s. with elevated beds. You could also have a second test group with of MSers with beds at a different elevation (4 vs 6 inches?). You'd want to assign the MS group to the control or test groups evenly, by EDSS score and/or duration of illness, and randomly...probably there is a computer program to do this. You'd need a reproducible, physical measurement to use to measure results...would this be EDSS score? Or measurements of spasticity, quality of life, whatever IBT is hypothesized to have an impact on.

M.S. is a terribly difficult disease to study because of all the natural remission/relapse that occurs, so it's hard to parse out if feeling better is because these ups and downs or because of the intervention. The longer the duration of the study, the more confident a person could be in its results. Such a study would need to be affiliated or overseen by a university and by someone with training in this or the results would likely not be considered valid. So again, it's back to convincing someone with the capability of doing such a study that it's worthy of time, money and energy and might have some career pay-off.

So how do you do this convincing? Ask cheerleader, she's done it? I suppose you have to come across as grounded and not crackpot. The theory itself has to be thought out...this is not a hypothesis out of nowhere, it's built out of what has been done for people recovering from strokes at hospitals and it ties in with the newly validated (by the Buffalo study) CCSVI theory. Make sure to back up these claims with the specific research studies that are applicable. Keep it short and compelling and not over-reaching...this is hypothesized to be an adjunct therapy, to have a beneficial effect, not to be the cure-all. To convince a researcher, you have to think like a researcher...so find anyone in the field who has done anything related to this, where this might build on his/her previous research; find someone who is accepting of CCSVI and sees how this can build on it. Research how to write up a research proposal and then write one. Expect that if you do find such a person, they're going to want to do the study their way, and you're probably out of the loop and off the credits page.

Just late night thoughts....

[JoyIsMyStrength]

how can my dad get this trialed under strict medical conditions/controlled experiments/clinical trials and have the real evidence recorded? who can he apply to? who does he need to talk to? how does he go about getting this done?

Unfortunately I think this would be very difficult since symptoms are subjective and the only way to study scientifically is to be able to ensure that everyone is following a precise protocol... e.g., exact bed elevation, environment, etc... but since this is self-reported I'm not sure it will be taken seriously. There would have to be a control group, too. Things that can be scientifically measured like blood pressure, urine output, etc. might be useful but I don't know what it would prove. Folks just report feeling better so it may be that the best we can do is provide anecdotal evidence. I'm no scientist though so maybe someone way smarter than me can chime in.

This is why the Swank MS Diet's effectiveness could never be scientifically proven. Diets are variable, there is no way to control the environment, and symptom relief is subjective. Similar situation.

Pam

[Cece]

This is why the Swank MS Diet's effectiveness could never be scientifically proven. Diets are variable, there is no way to control the environment, and symptom relief is subjective. Similar situation.

Exactly...and no money in it either, so no easy source of funding from a drug company as an investment.

There would be ways to run clinical trials on Swank's MS diet, although patient compliance would be tricky...but honestly, throw enough money at a problem, and it could be solved. You could have the MSers assigned to the Swank diet group get meal delivery service that brings it to their door...I know I'd be much more compliant if it were made that easy. (And meal delivery service for the control group too, but of fattier foods!!) There's just no money to put toward such a trial because no investor would have any gain from it.

[Cece]

Unfortunately I think this would be very difficult since symptoms are subjective and the only way to study scientifically is to be able to ensure that everyone is following a precise protocol... e.g., exact bed elevation, environment, etc... but since this is self-reported I'm not sure it will be taken seriously.

You could standardize the bed elevation fairly well by handing out manufactured 4 inch blocks with an instruction sheet of how to apply them.

[facetspera]

The information on iBT has been great. Three weeks ago my son helped me raise my bed. He used a series of 2 x 4s across the width of my bed to go from 6inches at the head, 3 in the middle to zero.

The first night I noticed less icy pain in my feet a couple of hours after I retired. I woke up to two room temperature feet. It was amazing.

I've not needed a heating pad and I have better colour- before one foot was purple and the other pale white. I wake up with flesh coloured feet. My feet do return to the two tones by evening if I have not had a nap and it is early still.

There is more feeling in my feet - resulting in better balance. I feel more "grounded" because I actually can feel the ground beneath me. It's still less than a month so I'll keep track of other changes. But the benefit in the circulation to my feet is enough that I'll never sleep flat again. Thanks so much for all the information posted. P.S. A friend took me for a pedicure at Xmas. When picking out a nail polish colour I asked for something that would not clash with my purple foot. I bet next year I'll be able to choose any colour I want!!

[lilaclomax]

After my first two (awful) weeks (due to a relaspe and infection) on IBT I can now add some more information...

My sense of smell has returned! I no longer sneeze or have a runny nose whilst at my workstation and food tastes so much better. I have always had sinus problems for as long as I can remember and although they had no completely cleared it is a 60-70% improvement.

I seem to need less sleep and I no longer have a lie in which always seemed to make me even more groggy. In the past I needed my 8-9 hours evey night but now 7 hours is more than enough - not sure how long this will last though?

With regards to my MS, I am still recovering from the Trigeminal Neurolgia and have residual traces of pain relief in my system. The lack of sensation in my left arm remains and my double vision still returns in the evening although seems to be less on my journey to work in the mornings. I am still fatigued in the evenings but not sleepy, just the lack of overall energy in my body and brain.

For my husband, he had the feeling of a hard day at the gym for one morning around the second week but has not been affected otherwise. The snoring is completely gone apart from post-alcohol which is to be expected and I can live with this as he rarely drinks

[shye]

Andrew-
I have posted before on how I have gotten color and feeling to my feet since starting IBT--but should I now be concerned about purple feet?
Top of feet good normal color, and bottom (always very pale before) now often purple, not just healthy pinkish.
I know there is a thread (no time now to find and read it) on purple feet-and I remember posters were worried--and these were NOT people doing Inclined Bed Therapy.
Maybe this is transient? Maybe is quite okay? Do have better feeling for sure.
Thanks

[AndrewKFletcher]

Andrew-
I have posted before on how I have gotten color and feeling to my feet since starting IBT--but should I now be concerned about purple feet?
Top of feet good normal color, and bottom (always very pale before) now often purple, not just healthy pinkish.
I know there is a thread (no time now to find and read it) on purple feet-and I remember posters were worried--and these were NOT people doing Inclined Bed Therapy.
Maybe this is transient? Maybe is quite okay? Do have better feeling for sure.
Thanks

Are your feet warm or cold? Colder than before you raised the bed or warmer?

The pinkish colour on upper part of feet indicates better circulation, so could be your feet are dealing with the increase in circulation.

Best thing to detrmin what is happening is to do a pressure test, pressing a finger on the foot to see how quickly the colour comes back. Should be very quick.

The improvements in feeling is expected using I.T.

Another possibility is a closed vein in the feet, unlikely but might be worth getting checked out for.

Andrew

Andrew

[Luvsadonut]

Hi Andrew,
I am raising the bed by 6 inches tonight but
have a few concerns, I have a wooden bed frame and
Im putting bricks under the feet at the 'head' end which
will create an angle for the head rest and foot rest - will
this create undue pressure on the bed frame and ultimately
damage the bed? Also Ive read in previous threads that IBT
may reduce heart BPM, Im currently wake up to 62 BPM and
would not be comfortable if that drops, any thoughts?
Thanks Darren