Inclined Bed Therapy

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

Re: Inclined Bed Therapy for people with multiple sclerosis

Postby ErikaSlovakia » Mon Nov 23, 2009 4:53 am

AndrewKFletcher wrote:Hi Erika

How is sleeping flat compared to sleeping on an inclined bed comparing? Have you noticed a difference recently?

Best

Andrew

I woke up with headache yesterday again but no nausea whole day. My balance is getting better.
I woke up with light headache this morning - so far no nausea.
Otherwise I feel the same as 5 days ago.
I do not like the pressure in my head while sleeping flat and of course I do not like the morning headache.
I will sleep flat 2 more nights, after I incline my bed 10 cm. If it is not enough I will incline it 16 cm as before.
All the better things after the procedure remain so far.

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 ErikaSlovakia » Tue Nov 24, 2009 1:03 am

After night 6 report:
I woke up with strong headache but no nausea. It feels like somebody put some spicy powder into my brain - especially the forehead and also part of the face.
So, one more night and I will definitelly sleep on inclined bed again. Flat bed is not good for me at all.
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 gibbledygook » Tue Nov 24, 2009 12:47 pm

Erika, I also think an inclined bed helps. I'm about to go away for 3 weeks and it will be interesting to notice if I feel a difference sleeping on a flat bed.
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 ErikaSlovakia » Tue Nov 24, 2009 12:58 pm

gibbledygook wrote:Erika, I also think an inclined bed helps. I'm about to go away for 3 weeks and it will be interesting to notice if I feel a difference sleeping on a flat bed.

Oh, I can not wait until tomorrow. I even had some nausea during the day.
My headache did not stop even after the pills.
One more night :D I will sleep on inclined bed for sure!
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 ErikaSlovakia » Wed Nov 25, 2009 2:29 am

After night 7:
I woke up with headache, I still have it, it will be whole day like that, I still did not have my breaksaft - 3 hours after waking up, I feel little nausea, I do not feel I am hungry.
I will incline my bed for sure tonight.
I will try to sleep flat again before I go to Poland, so I can tell Dr. Simka about it.
The other improvements after the procedure remain the same.

Conclusion: I do not like flat bed at all!
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 » Wed Nov 25, 2009 2:59 am

Thank you Erika, you have shown clearly that there is a difference for a person with ms sleeping on an inclined bed compared to sleeping on a flat bed.

It must have been very difficult for you to go against your comfort zone to help others understand the differences.

Please can you tell us if you noticed a change in your body temperature sleeping flat compared to inclined? Did your hands and feet warm as quickly?

Did you experience improvements while sleeping flat?

This is important because you are about to revert back to sleeping on an incline and your observations returning back to and inclined bed are going to be equally important.

I can't thank you enough for what you have done and no one can pretend you are not a real person because we have all seen you on the video having your stent procedure.

Regarding your headaches and nausea returning.

We can now attribute the improvements reported by you previously relating to headache and nausia to I.T. And reverting back to an inclined bed should make it concrete evidence.

What should be concerning anyone reading this is what are these headaches and are they part of the ms process, if they are then could this also indicate that sleeping on an incline is assisting the body to overcome it?

We need more people willing to try Inclined Therapy over a minimum of 7 months to confirm the Multiple Sclerosis Resource Center MSRC report titled Raised Bed Survey.

If we can get a few more people who revert back to report their findings during sleeping flat, we can show the forum what I have seen and the people who have benefited like Foreverspring have seen using Inclined Therapy.

If you are waiting to have the stent procedure, surely it is worth considering testing the raised bed method while you are waiting surgery.

Erika and all the people on this magnificent forum, Thank You for taking the time to read about my research and if you are sleeping inclined, Thank you for your trust.

Best wishes

Andrew
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Postby HelenMSRC » Wed Nov 25, 2009 7:45 am

Andrew,

You now have me completely confused with this comment

Was it a coincidence that the now curent manager featured on the youtube video from the MSRC called me out of the blue to tell me that he was not scared of me? then put the phone down leaving me bewildered!


Current manager - the person in that Youtube video is Lawrence Wood the PREVIOUS chief executive who finished at the charity in May 2007. Again as I have stated in my post previously (on a separate CCSVI thread) I cannot comment on what my predecessor may or may not have done. I can also not condone making such a statement in a public forum

I can however state that I am sorry if ANYONE at our charity has caused you injury or upset - this is not something we would tolerate or expect from any of our current team here at MSRC.

Helen Yates
Chief Executive MSRC
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Postby Algis » Wed Nov 25, 2009 8:42 am

Andrew:

I'll start to test the inclined bed procedure as soon as I get the fixture. Please tell me if you'd like to have any record 'before' I proceed and if you have a dedicated page or else where all that is recorded.

Please note however; that my answers might be delayed due to my time frame (GMT+8 - SE Asia)

Cheers!

Algis
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Re: Erika You are a Brave person

Postby ErikaSlovakia » Wed Nov 25, 2009 11:07 am

AndrewKFletcher wrote:
Please can you tell us if you noticed a change in your body temperature sleeping flat compared to inclined? Did your hands and feet warm as quickly?

Did you experience improvements while sleeping flat?

- the body temperature - I must explain you something. The hause of my parents where I live is about 110 years old - it is cold house. My room is north-west - so it is the coldest room in the house. If you sit in my room in August and it is +40°C outside, your feets and hands will get cold anyway. We do not have any AC of course. So it is normal to have cold hands and feets often in my room. So, I think it was the same, but as I have this hard conditions it is only ???
- I tried only twice not to take the sleeping pill - it did not help I had to take it 3 hours later anyway

As for the headache, my MS headache was often very strong. I have been having middle strong headache whole week - even now.
The strong headache stopped maybe after 5 days after the procedure. I did not have any strong headache during this week, biut constant middle headache and often nausea.

My brother helped me to lift the bed - I have it now 11 cm. I will see after couple of days if it is enough.
I will report you tomorrow for sure.

Actually I started to have saome hot flushes after the procedure. I still have it sometimes. But my bed in hospital was flat for sure, in the hotel as well.

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 AndrewKFletcher » Wed Nov 25, 2009 11:19 am

Algis

Thanks.

It will be very useful if you can read the posts here, Have made a list of parameters to monitor.

http://www.thisisms.com/ftopict-6755.html

If you can write down all your problems with ms, level of sensation etc and keep a diary reporting back as and when you note changes positive or negative we should be able to see clearly any effects.

Do not hesitate to contact me


Andrew
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Postby Rose2 » Wed Nov 25, 2009 3:33 pm

Hi!
I am sorry if this has been asked already, but does a wedge pillow (like for GERD) work in the same fashion or does the entire bed need to be angled down to the toes?
Thank you, Rose
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Postby AndrewKFletcher » Wed Nov 25, 2009 11:40 pm

Rose2 wrote:Hi!
I am sorry if this has been asked already, but does a wedge pillow (like for GERD) work in the same fashion or does the entire bed need to be angled down to the toes?
Thank you, Rose


Afraid not. The whole bed needs to be tilted for this to take effect. having half of the bed elevated compresses the spine, tilting the whole bed applies a gentle traction to the spine.

The main circulatory improvements from tilting the bed correctly far outweigh any compromises.

It is easy to tilt a bed however, let me know if you need advice on achieving this.
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Postby Algis » Wed Nov 25, 2009 11:54 pm

Thank you Andrew.

Symptoms and effects of my MS are too numerous to just spit all of them without giving it a deep thought. I also have memory or other cognitive defaults; I would like to lie to myself but I still objective enough to be sure of that. No mood swing nor derision (I hope) but some 'holes' in coherent thinking if that is understandable...

And my only valid hand / arm is getting quickly tired after typing few lines; so it always take forever.

I can tell I have no varicoses in legs; no obvious venous problems. Tho reading previous posts I may think my toe's nails and perpetual cold feet mostly indicate a leg's venous flow problem.

I will write more when that comes to me and keep you informed. I hope I can find someone soon to help rig my bed.

Cheers!

Algis
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Postby AndrewKFletcher » Thu Nov 26, 2009 12:27 am

HelenMSRC wrote:Andrew,

You now have me completely confused with this comment

Was it a coincidence that the now curent manager featured on the youtube video from the MSRC called me out of the blue to tell me that he was not scared of me? then put the phone down leaving me bewildered!


Current manager - the person in that Youtube video is Lawrence Wood the PREVIOUS chief executive who finished at the charity in May 2007. Again as I have stated in my post previously (on a separate CCSVI thread) I cannot comment on what my predecessor may or may not have done. I can also not condone making such a statement in a public forum

I can however state that I am sorry if ANYONE at our charity has caused you injury or upset - this is not something we would tolerate or expect from any of our current team here at MSRC.

Helen Yates
Chief Executive MSRC




Dear Helen

Obviously I had not realised that management had changed again at the MSRC and therefore none of my comments relate to you personally.

3 directors including yourself have been in place while I have been fighting to have the “Controlled Study” conducted for people with MS. The same study that John and Jean Simkin’s assured myself my family and two colleagues would be simple to set up and that the MSRC wanted to be involved form the onset and offered their support and guidance.

A tremendous amount of effort money and time was invested in providing the pilot study results for the “Raised Bed Survey” A protocol was put together, after all we are talking about simply tilting a bed and monitoring 50 people with ms sleeping inclined and 50 people sleeping flat and as John suggested a double cross over would provide concrete evidence one way or another whether Inclined Therapy is effective for people with ms or indeed not.

A controlled study or rather the lack of a controlled study has been the main defence of the medical profession and indeed charities like yours against this simple paradigm.
Therefore the likelihood of the study going ahead was always going to be controversial.

I put it to you that as the director of the Multiple Sclerosis Resource Centre you should seriously re-consider the promises that were broken by the MSRC all those years ago and pick up the challenge to conduct this vital study, not for me but for all of those people with multiple sclerosis who could be making use of this research to improve their lives.

Publication of the Raised Bed Survey on the MSRC website in it’s entirety would be a good start.


Ask yourself would anyone continue to work on a theory for 16 years in the face of adversity and contempt prior to investigation unless they had observed sufficient evidence to support it?

On this Erika’s Inclined Therapy thread right here where you have posted. The double crossover experiment is unfolding for everyone to observe. Admittedly reverting back to flat bedrest should take place following 6 months of using an inclined bed to sleep on but even in this short space of time we can see from Erika’s posts that there is clearly an effect.

The question is are you willing to work with me and see this through to a rightful conclusion by helping to set up a controlled study?

Andrew K Fletcher
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Postby HelenMSRC » Thu Nov 26, 2009 2:48 am

Andrew,

Given the serious nature of the allegations you have made with regards to MSRC, I think that any further "conversation" should be conducted via email or telephone.

You are welcome to email me on info@msrc.co.uk or to telephone on 01206 505444.

Helen
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