Inclined Bed Therapy

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

Postby ErikaSlovakia » Fri Nov 27, 2009 1:35 am

VICTORY :!:
My second night on inclined bed again. I woke up with NO headache at all.
NO nausea - I had my breakfast.

Andrew, tell your wife her husband has very good ideas :D

Thank you!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Erika You are a Brave person

Postby AndrewKFletcher » Fri Nov 27, 2009 2:22 am

Thank you Erika your reports are indeed valuable.

Now we have established that it is Inclined therapy relieving your headaches and nausea, over the next 4 months providing you avoid sleeping flat (use anything to tilt a bed when away from home) we should be able to learn whether your optic nerve damage is completely restored and your other ms symptoms follow the same route as your nausea and headaches.

If the many reports from people with ms over many years are anything to go by you are in for quite a few surprises.

Please keep a diary and note down anything unusual, whether you think it is related or not.

And please inform Dr Simka and your consultants about what we are doing as this will help prevent them from skewing results with the stent procedures. This is very important Erika and needs to be pointed out to Professor Zamboni also.

If we don’t do this then when others repeat the stent procedures and fail to get the same results as when a person with ms is sleeping inclined, it will appear to falsify any results that unwittingly included IBT as part of the regimen.

To gain an understanding of what is likely to happen to you, read this letter from Terri Harrison who for 11 years has remained virtually symptom free. Terri is on my Facebook account friends list, feel free to contact her she would love to hear from anyone.


http://www.msrc.co.uk/downloads/npwm_2002_0011.pdf
Pathways Magazine: Multiple Sclerosis Resource Centre: MSRC

What was published:

Bed Raising Helps
Dear New Pathways,
Since sleeping with the head of
the bed inclined 6" higher than the
foot, I have been in remission for
longer periods of time - with
instant relapse if I sleep flat.
Teresa (Terri) K. Harrison



What Terri Wrote:


Dear Ms. Graham, (Editor of New Pathways Magazine)

I have been asked to write to you to describe how I have been
successfully dealing with my Multiple Sclerosis symptoms. I communicate
regularly with those who are certain that the ABC drugs are the only way to
assure no further progression, yet I feel that they are overlooking something
completely safe and effective which has helped me greatly!

I was diagnosed over three years ago with relapse/remitting MS. This was
after some ten years of strange symptoms that went undiagnosed. My symptoms
began with numbness/tingling (pins and needles sensation) from my shoulders
down. That lasted several months. I went to a massage therapist that said
my muscles were tight and had me lie on small rubber balls along my spine to
help stretch those muscles. Whether that or simple a remission helped, I'm
not certain.
The tingling was accompanied with a strange sensation when I tilted my
chin down to my chest. I found out after the MS diagnosis that this is
L'Hermitte's sign and was nearly an assurance of MS. I wish someone had told
me that then! My family doctor has little experience with MS and didn't
refer me to the proper specialist with such strange erratic symptoms.
About five years ago I had a problem which came on suddenly as I was
driving. I experienced double vision. I immediately went to an optician to
get a pair of glasses. Yet I complained that they didn't help much when she
prescribed bi-focals at age 33! After a few weeks a changed to a pair of
single vision lenses that I wore for some time.
Other strange feelings from the on-set was a feeling that my skin was
burned. It was super-sensitive to the lightest touch. My doctor diagnosed a
muscular problem and gave my muscle relaxers. They only made me sleepy and
the problem would come and go erratically. I noticed that a chill would
bring this feeling on and taking a warm shower with gentle massage could get
it to pass more quickly. Sometimes the feeling would take weeks to pass and
I could get it down to days or hours with the warm massage.

The queerest thing that happened to hasten the MS diagnosis was when I
woke up one morning totally without central vision in my left eye. I went to
the hospital and they did a CT scan and other tests with no diagnosis. A few
weeks later I got an appointment with an ophthalmologist. After observing that
I had no pupil reaction to light with no other problems, she asked if I had
ever been diagnosed with MS. I told her I has no diagnosis and she suggested
that a neurologist would most likely agree with her that that was the correct
diagnosis. She told me I was experiencing Optic Neuritis and that it would
like pass in another three weeks. She was precisely right!
After a second episode of Optic Neuritis with the same eye and not quite
such a drastic loss of sight, I had an MRI of my brain. The radiologist who
read the results gave a certain diagnosis of MS. I followed up with a visit
to a neurologist.
I was terribly fascinated with the MS diagnosis. I knew very little
about this disease and read everything I could. While I was looking for
information on the internet, I was looking for specific suggestions about
relief from a hot, burning sensation, different from anything I'd felt
before.

One link took me to a page when Betty Iams was suggesting a possible hint
for MS sufferers. She suggested that she had this burning feeling and she
had a great deal of trouble walking. I had been noting a little trouble with
walking, but a great deal of this burning. She also indicated that the need
to get up to urinate during the night interrupted her sleep. I had a little
trouble with this too. She suggested a study that she was involved in for
people with MS who were not on any other medications. She had tremendous
results and it seemed silly not to give it a try.

Betty's suggestion was from Andrew Fletcher. Andrew has done extensive
research, which originally began when he discovered how trees raise water.

Andrew found a way to use gravity to lift water higher than was originally
thought to be possible using current physics theory!
Through extensive research, Andrew took his theory further by relating the new
laws of physics to how our human bodies function. His theory is that all of our
bodies contain mineral salts and sugars and that when we lie flat they accumulate,
without being circulated or removed by the bladder.
These minerals may be what is "eating away" at the myelin causing
the MS symptoms. Andrew's thoughts suggest that sleeping with our body
inclined slightly, we increase the body's own circulatory system washing away
the minerals that are at fault.
My first thought was one of confusion over the scientific principals, but
that the notion of simply raising the bed seemed so simple that I had to TRY
it. I placed two plastic crates under the frame of the bed. I measured and
that was only 5 inches higher at the head than the foot, but was the best I
could do easily. The first night I tried this, I noted that the burning in
my leg was gone and I didn't get up during the night. My husband hated it
since we slid down to the foot and wasn't going to do it again. I put us
back flat and went back to the burning feeling right away. The next night I
was ready to send him to the couch! I was going back to inclined. I did add
a footboard to ease the sliding down problem.
For three years I have been sleeping in this position. I have had no
further major symptoms with MS. I do have an occasional problem usually
aggravated by stress or lack of enough sleep time. I had an occasion to
sleep flat in a hotel for one night and I had an episode of Optic Neuritis
that passed the very next night I was back to my own bed! The bed has helped
my husband with his gastric reflux and we both snore much less! Neither of
us would go back to sleeping flat. I have modified the plastic crate method
of raising the bed. We now are using plastic PVC pipe that the legs of the
bed simple fit into and the frame rests on top as if we'd simply extended the
legs. The head of the bed is 6 inches (15 cm) higher than the foot of the
bed.
The only medication that I take is .5 mg of Xanax to assure a solid
night's sleep and cholesterol medication, 20 mg of Zocor. Sleeping inclined
was certainly helpful for me. I recently had another MRI. "There are no
enhancing lesions to suggest acutely active plaques and no other
contrast-enhancing lesions are depicted on the MRI". This is in stark
contrast to the MRI three years ago! My only lingering symptom is some loss
of feeling in my left hand. Increased use and exercise seems to improve its
condition slowly.
Last edited by AndrewKFletcher on Fri Nov 27, 2009 3:26 am, edited 1 time in total.
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Terri Harrison today after more than 11 years of I.T.

Postby AndrewKFletcher » Fri Nov 27, 2009 2:48 am

Previously Posted: Mon Jun 01, 2009 7:41 pm

Post subject: Replies from 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.

What he 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!) Smile

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 endeavor. 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!

Feel free to contact me at tharri8896ATbex.net if you have other questions! Replace the AT for @ to talk to Terri

Terri Harrison
USA

Quote:

Terri,

Curious minds would like to know . . . What has it been like to spend 11 years with MS on a tilted bed? Smile

How old were you when you started? How has it helped you? Has your MS progressed at all since you began this therapy?

I am looking forward to hearing from you, and I am sure that others will find your experience interesting and encouraging, too.


Terri Harrison
28 May at 03:35
I was 34 when I was diagnosed with MS. I was lucky enough to find about about the tilted bed right away. My husband complained about falling off the end, but I found an old headboard and we used it as a footboard and that stopped the problem.

I have experienced some occasional flare-ups, but nothing that hasn't passed completely. I occasionally "play" with the height at the head, but if something flares up, I go for a higher setting for a few months (or more) and it ALWAYS works!

"Marrital" relations are a big more challenging on an incline, but who says we can't use a different bed (the guest bed?) for that? It's not like I intend to SLEEP. Sleep is serious business to only be carried out on the inclined bed for my nightly MS therapy.

Even on vacation, I take my PVC pipe pieces to prop up the head. I have wondered what the airline screeners thought about the pipes in my suitcases!

Feel free to contact me with other questions - tharri8896ATbex.net

Terri Harrison
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Foreverspring update on sight improvements.

Postby AndrewKFletcher » Sat Nov 28, 2009 4:47 am

http://www.thisisms.com/ftopic-6755-135.html

Erika Have you read Foreverspings latest update?

Her sight is also improving significantly and she has not had the stent implants.

Andrew
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Re: Foreverspring update on sight improvements.

Postby ErikaSlovakia » Sat Nov 28, 2009 5:31 am

AndrewKFletcher wrote:http://www.thisisms.com/ftopic-6755-135.html

Erika Have you read Foreverspings latest update?

Her sight is also improving significantly and she has not had the stent implants.

Andrew

No, thak you, I just have read it now.

I also wrote nice report to the German site - I am sure Dr. Schelling will read it as well.
Some patients from Slovak and Czech Republic tilted their bed as well.
Of course I must inform Dr. Simka in January about this.
In case my optic berve gets better we will never know what was the exact reason, if it was only the stent, only the bed or combination.
I am just a simple patient, I will be happy for any improvement.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby topper » Sat Nov 28, 2009 8:22 pm

Hi everybody.

I'm new here. I'm Canadian and found this site on Sunday after w5. I was diagnosed July 2006. I've been lucky. Only weakness and numbness in hands and upper arms. When I found this site I was shocked to see the stories much like mine about the neck leasions. I have proped up our guest room bed tonight and am starting inclined therapy. I am a big headache morning guy as well as tomato face hot heat in the afternoon. My wife who is a nurse thought it was Job stress or blood pressure issues but I'm convinced it is ccsvi. I was on betaseron but had bad "trips". Stopped that a year ago and am now not going back. I've crammed and am up to date on the board. Nobody outside of my immediate family knows about my dx. It feels liberating posting to this community. Thanks.
Go Tigers!
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Maybe a bed wedge would be useful

Postby hwebb » Sun Nov 29, 2009 12:11 am

I am going to try the inclined sleeping position. I notice that when I fall asleep with my arms above the covers...they go numb. When I keep them under the covers, and straight....just minimal numbness in my fingertips the next day (arms fine).
I also have been unable to sleep with a pillow since diagosed - feels too uncomfortable in my neck. Holding me head downswards to read etc is also uncomfortable.

I'll try raising my bed-head...but think something like this bed-wedge for people with gastric problems may be a solution too:

http://www.the-pillow.com.au/more/bed_wedge_more.php

This would disturb my partner less (possibly ???)

Helen
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Postby AndrewKFletcher » Sun Nov 29, 2009 1:31 am

Hi Helen the wedge pillow will not bring about the same affect, the whole body needs to be tilted to a five degree angle.

If your partner does not like it your partner will have to get used to it or sleep on the couch. This is your life Helen make the most of it.

However, that said partners usually find great benefit from sleeping inclined. You don't have to be unwell to benefit from Inclined Therapy.

:D

Besides $200 for a foam wedge???? use blocks of wood they are free!

There is a drawing on the first post of this thread that shows how easy it is to tilt a bed, even those that join in the middle can be tilted safely.

Castors off the bottom prevent the bed moving around and falling off the blocks.

Please tell us more about your problems with ms so that we can understand better when you update us on your progress should you wish to do so.

Andrew
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Postby AndrewKFletcher » Sun Nov 29, 2009 2:25 am

Erika

Thank you for posting information about Inclined Therapy on the other forums, it is a great help for me and for people that need to find an alternative to the drugs.

I am a little concerned that you are spending too long sitting at the computer trying to help others. This cannot be good posture, so take some time out and move around more.

You are so considerate in helping as many people as you can, you might forget to look after yourself in the process and we don't want anything to interfere with your health.

You are indeed a special person, take care.

Best

Andrew
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Postby AndrewKFletcher » Sun Nov 29, 2009 2:37 am

topper wrote:Hi everybody.

I'm new here. I'm Canadian and found this site on Sunday after w5. I was diagnosed July 2006. I've been lucky. Only weakness and numbness in hands and upper arms. When I found this site I was shocked to see the stories much like mine about the neck leasions. I have proped up our guest room bed tonight and am starting inclined therapy. I am a big headache morning guy as well as tomato face hot heat in the afternoon. My wife who is a nurse thought it was Job stress or blood pressure issues but I'm convinced it is ccsvi. I was on betaseron but had bad "trips". Stopped that a year ago and am now not going back. I've crammed and am up to date on the board. Nobody outside of my immediate family knows about my dx. It feels liberating posting to this community. Thanks.


Hi Topper

Thanks for joining us and tilting your bed.

Be patient it takes around 2 weeks to begin working properly and up to 4 weeks to see changes. 4 months or more is not an uncommon amount of time that nerve damage takes to repair for most people althugh there have been some far quicker responses.

You should be able to define the differences between flat and inclined bedrest easily.

Best wishes to you and your family

Andrew
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Postby healthymama » Sun Nov 29, 2009 1:09 pm

I just inclined my bed 2 nights ago. I no longer feel like I am going to black out when I get up in the morning. I used to have to sit on the edge of the bed for quite sometime before rising. No complaints from my husband! I think I will incline the bed on vacation next week too!
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Postby Shannon » Sun Nov 29, 2009 1:39 pm

My husband has been working hard today to build a plywood and 2X4 incline for our mattress. He also has sleep apnea, and I also have GERD, so it's been a long time coming for us to do this anyhow. I hope of course to the most improvement in my MS symptoms. Be well.
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tried the inclined bed last night

Postby hwebb » Sun Nov 29, 2009 2:13 pm

I tried the inclined bed last night. Certainly feels more comfortable - I usually toss and turn as my neck feels uncomforatble lying flat (and even worse with even a low pillow under my neck). So I woke up without a stiff neck, which is good. I'll keep going with it, to see if I have more improvements.

Helen
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Postby sewwhat » Sun Nov 29, 2009 3:24 pm

Hi all
I have been sleeping on a (little over 5"inch) inclined bed for over a month now.

I have noticed great relief from my morning headaches. I used to wake up at least twice a week with a headache and vomiting. I have only had one headache since starting the incline and it was not a morning headache. It was a headache from a long stretch of not eating, so it doesn't really count.

Also have noticed that I am ready to go start my day as soon as I wake up. Even though I don't sleep much, there has been no groggy morning fog. I feel more refreshed and truthfully so grateful that I wake up feeling no pain in my head.

Another plus..I used to wake up with the feeling of fluid pooling in which ever hip I was lying on. I don't know if anyone else gets this but it was a strange feeling that sometimes hurt upon waking. Well I have not had that feeling since starting the incline.

Problem is my husband does not like it! He constantly wakes with a numb arm. We are hoping that goes away after awhile?

I am hoping to sleep on an incline forever because it is really helping the pressure in my head. But if husband doesn't get better I don't know..we may have to put two beds together one on a incline and one without, that would look pretty weird but it maybe the only option.
Could the adjustable beds work for us?
I thought I read somewhere that they are not comparable and that you can't achieve the correct incline with them? Is that true?
Thanks :)
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Postby topper » Sun Nov 29, 2009 3:42 pm

Andrew,

Thanks for the kind words. First night update: went to bed late, woke up early and energized. I haven't seen 7:30 on a Sunday morning forever!!! Lol. It might be the placebo effect. I'll keep everyone posted.
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