Inclined Bed Therapy

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

Postby NoDrainer » Sat May 22, 2010 8:38 pm

Thanks for your reply Andrew.

It's not the Serrapeptase. Only started taking it a few days ago and it is relieving the numbness somewhat.

What about using compression stockings? Any other tips/tricks?

I want my IBT!
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Postby AndrewKFletcher » Sun May 23, 2010 1:17 am

Are you sleeping with your legs stretched out in bed or are your knees up near your body?

Are you sitting for long periods during the day and evening? If so are you sitting in accordance with the photographs supplied?

Do you wear compression stockings in bed?

Where do you live (general location) for example river valley, coast, near a lake, on top of a hill, arid, damp, humid?
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Postby gibbledygook » Sun May 23, 2010 3:01 am

I don't think everyone is having such a positive experience of IBT. I've slept on a 6" inclined bed since last year before my stent treatment in June 09. 3 months after the operation I became pregnant and my MS has been substantially worse since then and I suffered a relapse around week 20 of the pregnancy. The IBT has not prevented this deterioration. I also wonder whether I should revert to a flat bed since the jugulars are open.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby AndrewKFletcher » Sun May 23, 2010 4:42 am

gibbledygook wrote:I don't think everyone is having such a positive experience of IBT. I've slept on a 6" inclined bed since last year before my stent treatment in June 09. 3 months after the operation I became pregnant and my MS has been substantially worse since then and I suffered a relapse around week 20 of the pregnancy. The IBT has not prevented this deterioration. I also wonder whether I should revert to a flat bed since the jugulars are open.


IBT should help you to recover what you have lost while carrying a baby. Pregnancy alone would alter many parameters on the IBT experiment and would certainly place an additional strain on your health and welbeing.

If you decide to go back to flat bed rest will you please keep us informed as to any differences you notice?

Now that we understand more about stenosis thanks to Professor Zamboni et al, we may eventually get to learn what happens to a stenosis when the bed is tilted.

Thank you for posting your update and I sincerely hope you find relief in whatever direction you choose.

Andrew
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Postby NoDrainer » Mon May 24, 2010 1:04 am

Answers For Andrew's Q's:

"Are you sleeping with your legs stretched out in bed or are your knees up near your body?" - sleeping with legs stretched out and hands stretched down too.

"Are you sitting for long periods during the day and evening? If so are you sitting in accordance with the photographs supplied?" - yes, way many hours, no doubt. Just got rid of office chair because it was more or less cutting off the circulation in the back portion of thighs. Is there a type of chair that takes the pressure off that area?

"Do you wear compression stockings in bed?" - Yes, just started 2 nights ago - 10-20's.

"Where do you live (general location) for example river valley, coast, near a lake, on top of a hill, arid, damp, humid?" - 8 blocks from the ocean near Vancouver BC.

Many thanks, in advance.
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Postby AndrewKFletcher » Mon May 24, 2010 3:18 am

NoDrainer wrote:Answers For Andrew's Q's:

"Are you sleeping with your legs stretched out in bed or are your knees up near your body?" - sleeping with legs stretched out and hands stretched down too.

"Are you sitting for long periods during the day and evening? If so are you sitting in accordance with the photographs supplied?" - yes, way many hours, no doubt. Just got rid of office chair because it was more or less cutting off the circulation in the back portion of thighs. Is there a type of chair that takes the pressure off that area?

"Do you wear compression stockings in bed?" - Yes, just started 2 nights ago - 10-20's.

"Where do you live (general location) for example river valley, coast, near a lake, on top of a hill, arid, damp, humid?" - 8 blocks from the ocean near Vancouver BC.

Many thanks, in advance.

Seat cushions on Ebay Wedge shaped. Some are useless so ask questions about how much they compress. Mine compresses far too much.

http://shop.ebay.co.uk/?_from=R40&_trksid=p3907.m570.l1313&_nkw=seat+wedge&_sacat=See-All-Categories

Do you have the air conditioning on? and does it regulate the humidity in the home?

Compression stockings might not be much use, but you will be the better judge when you have tried them for a while.
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Postby Jugular » Mon May 24, 2010 10:45 am

Regretably I have terminated IBT after 5 months. After a few trips where I slept on a flat bed again and noticing no ill effects as well as having no improvement in my MS symptoms, I decided to rejoin the flat bed society.

Positive results of IBT for me resulted from the body frame stretching that gravity caused. Years of walking funny with my drop foot set my hips askew. For the first month and a half of IBT I had terrible lower back pain because of this. Eventually it went away completely.

Positive results of returning to flat bed sleeping are that I lost 5 pounds and my gut isn't as bulgy. My BMs are also better with more solid easier to clean up after you-know-whats. I seem to be getting better sleeps and the late afternoon wall at work isn't as hard to get through.

Apart from that I am having just as vivid of dreams and my MS is more or less the same.

Based on my experience, IBT was good spinal alignment therapy but neutral on my MS.
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Postby Jugular » Mon May 24, 2010 11:00 am

I forgot to mention that the Mrs. found these cheap and sturdy bed risers at Walmart that worked perfectly. They are also much more inconspicuous than say planks of wood. Though I didn't do this, you could pack them in your suitcase to temporarily raise hotel beds and such.

http://www.walmart.com/ip/Adjustable-Bed-Risers/5148131
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Reverting back to flat and bed risers suitable for IBT

Postby AndrewKFletcher » Tue May 25, 2010 10:25 am

Jugular wrote:I forgot to mention that the Mrs. found these cheap and sturdy bed risers at Walmart that worked perfectly. They are also much more inconspicuous than say planks of wood. Though I didn't do this, you could pack them in your suitcase to temporarily raise hotel beds and such.

http://www.walmart.com/ip/Adjustable-Bed-Risers/5148131


These look very useful, thanks for the link, I am sure people will find these bed raisers both easy to use and economical at $11 they are a gift.

Thanks also for reporting your experience using IBT. Please continue to add your experiences using a flat bed so that others can learn from your feedback.

Andrew
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First night of IBT

Postby pal » Thu May 27, 2010 6:36 am

I wrote a rather long-winded post asking if anyone had tried the Beautyrest mattress topper, which provides about a 4" head to toe incline. We received it yesterday, and immediately put in on under the sheet.

After one night, the results are seemingly so dramatic I can hardly believe it. I am almost afraid to hope.

My partner has had increasingly severe sleep problems for several months: waking up to urinate, restless and tingling leg discomfort, snoring and anxiety. Mornings brought worse than usual numbness, leaden feet, unsteady gait and, of course, depressing fatigue.

He slept straight through the night. I cannot remember the last time that happened. When he woke up, he moved faster and was lighter on his feet. His urination (after over 8 full hours) was briefer, less urgent and less strained. For the first time in recent memory, he says he feels "refreshed."

We talked about it. We wonder if other things might have played a role -- using air conditioning, a build up of the l-tryptophan he started last week, the softness of the foam, or just pure exhaustion. But I know something is different. I see it in the way he's moving. If these modest gains continue (or possibly even increase) it will be the answer to our prayers. It's the first positive thing that has happened in many, many years.

(and Andrew, we fully intend to eventually find a more durable method)
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Postby AndrewKFletcher » Mon Jun 07, 2010 10:10 am

Pal Any chance of an update on your progress using IBT ?
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Tracy's MS Tracking with IBT

Postby AndrewKFletcher » Wed Jun 09, 2010 12:45 am

http://andrewkfletcher.com/index.php?op ... &Itemid=30

Another update, it has been, I think, about 2 months of raising the head of my bed 6" and middle 3". I am feeling nothing but fantastic effects from IBT. I seriously was down when I started this. I felt crappy EVERY day. Foot-drop, vertigo, fatigue, spasticity. Now, my days are better. I have problems less. I still have the foot drop but less frequently. I am assuming this will keep improving, but since I am not known for being patient, I think I am getting a Bioness. I am 95% better with vertigo, which greatly improves my day in a lot of ways. Still get the knee thing I talked about earlier, but hoping Bioness corrects that, too. It is probably some old damage done to my CNS and will either not heal, or heal slowly. I have more energy, too - which is making my kids happy.

Speaking of which, my son has Psoriasis. He's 8. So of course, we are using IBT for him, as well. It is helping. He flops all over the bed, so I need to figure out a way to prevent him from going sideways, but it has made a difference. I wanted to take pictures of before and after, but he's kind of sensitive about the Psoriasis, and was embarassed.

So, my first Facebook email to Andrew said, "...you're a genius" and I still feel that way!

Also, I forgot to add, I do agree with the whole concept of CCSVI, which is actually how I heard about IBT. I would get the Liberation Therapy, but since I am in the US, I'd have to go overseas. Not thrilled with the idea of going abroad and coming back here and possibly needing follow up treatment. But, IBT has worked so positively for me, that even when I do have a chance to do the Liberation Therapy, I may just be all better then from the $10.00 purchase I made at the lumber yard!
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Postby pal » Wed Jun 09, 2010 5:46 am

AndrewKFletcher wrote:Pal Any chance of an update on your progress using IBT ?


Continuing benefits are hard to quantify. After the initial (and remarkable) first couple of days, insomnia has returned occasionally, though not as bad as before. He seems to have slightly more energy/stamina --at least to me-- but says he feels the same, numbness & foot drop the same. We both agree that it's had a stunning impact on nighttime urination; he often sleeps through the night. So, definitely better in some respects, though not the miracle we hoped for. Going through a very stressful period IRL, so that also has to be factored in. The incline is subtle at rest, and I like it too. Have purchased the Walmart bed risers online and plan on trying them. Any suggestions?
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Postby AndrewKFletcher » Wed Jun 09, 2010 9:03 am

IBT takes a long time to deliver results, it is not a short term fix, although some like you and your partner experience substantial improvements within a few days.
Generally, the first two weeks can be uncomfortable and some people have difficulty adapting to sleeping at an angle.

4 months of IBT is a good target.

Patience is the virtue required :)

Smart move with the Wallmart Raisers, these can be taken on holls in suitcase.
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Terri helps a waitress who has ms with IBT

Postby AndrewKFletcher » Sat Jun 19, 2010 11:58 pm

Terri Harrison 19 June at 13:41 From Facebook
Had dinner where I had previously told the waitress about sleeping inclined. She has used over 8 kinds of medicine, including interferons, for her MS. She didn't see anything wrong with trying the bed - and it didn't cost her anything (her other meds cost more than she makes!!) She is very happy to report that it is working!! She doesn't have the muscle cramping and some of her other symptoms have stayed in remission!! She wanted me to thank you for all your work to get her where she is now - after only a month or two!! (She has been diagnosed for over 15 years) :D
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