This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Andrew,

I'm new here and find this fascinating. I am trying to help my lovely and amazing daugher who is an MSer -- who would thrill to a non-drug related therapy.

Before I tell her about this please tell me what happens, do you know, if you adopt this practice and then must on occaison sleep on a flat bed (e.g., while traveling)? Is it likely to have a very deleterious effect if done only occaisionally? I am worried it might undo all the good.

In my daughter's case her first attack was noticed upon waking in the morning -- and I've heard this from others.

Does anyone know if this is the norm -- that relapses and attacks are more common in the morning following a night spent horizontal?

swibe,

Absolutely! I have awoken with numbness in my leg that never went away (like it was shot full of Novacaine), a bladder that wouldn't do squat despite being first thing in the morning, and the start of optic neuritis. I know it's anecdotal, but if the pattern fits, it can't hurt to collect more evidence.

~ Sandra

_________________
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I too am fascinated with IBT, and am just trying to get up the gumption to modify the funky bed that I made before MS. It would be simple if I felt good...

Regarding time of day of onset: I first noticed something odd about colours in the late afternoon. By evening, I was asking others if the TV seemed dim, and the following morning, everything had turned dark grey in my left eye. It got worse, and took years to resolve. My left eye is still a bit pallid 16 years on, but about 98%.

Oddly, when I was a kid, I noticed a difference in my eyes.

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My name is not really Johnson. MSed up since 1993

My report.
I still have onla mild or middle headache very often no headache.
I am glad I do not have the strong headache.

- my back still can not ged used to the bed - I have alwas backache in the morning. But it goes away after 15 minutes. It is certainly not as bad as my headache.

Some of you maybe know that I am "step back" - my fatigue is worse again.
I wait for better days. It is only my day 37 after the procedure.

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

Erika

I was expecting you to step back / feel worse after you slept flat for 7 days. Was surprised when you said everything was as before except for the headache.

The fatigue should resolve over a few weeks.

Your backache is probably down to a poor quality mattress together with the traction the incline places upon the spine.

This can also be the cause of backache as the posture becomes more upright over time, but should ease.

To test to see if it is the mattress, wrap a quilt / duvet or a thick soft blanket around the mattress and under the bottom sheet.

Thanks for the update.

Andrew

Dear Andrew!
Thank you very much for you advices. No, my fatigue came back only 3-4 days ago. Many people have this after procedure - better-worse.
I am answering e-mails and some posts basicly whole day. I start in the morning and finish in the evening around 10 pm.
Maybe it is not good for me. I do not know.
As soon as I get healthier I start to work and I will buy new bed. I do not have any other choice.
I think I need more time. I am only 37 days after the procedure.
I swear I did not feel the fatigue the first 33 days.
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

Swibe

We could set up a poll and ask questions about the time of day when people felt / feel their condition deteriorating and at the same time ask what the weather was doing.

These are questions I asked in the pilot studies, the results were strongly in favour of damp / humid weather (which fits with the evaporation part of the theory) And a definite increase in symptoms during the night and first thing in the morning.

But, let's also remember the wheelchair posture designed to keep people in a wheelchair and which is also doing a grand job of preventing people from walking.

So a person using a wheelchair may also find their symptoms worsening during the daytime IMHO.

The answer to your question about reverting back to a flat bed is "why would you" when an angled bed is making life easier?

But yes even one day can bring it home and several days sleeping flat can reverse some of the gains and it can take 4 weeks or more to get back to where you were before sleeping flat.

Proves the link between horizontal bed-rest and a screwed up nervous system though, albeit debatably still anecdotal.

Any theory begins as an hypothesis. Then it is tested and if predictions are proven, it becomes a theory awaiting others to test it in a controlled environment.

Sadly this has not happened, despite many people saying it would.

So we set up another pilot study involving many people and prove the results again from the previous pilot study and again more people make empty promises about conducting an illusive controlled study.

Third time lucky? Yes this is the third time a pilot study is being conducted but not to confirm what is already known but to bring this therapy to those who need it now rather than in sixty years time when the MS Charities, medical profession and scientists finally bend to pressure from the people benefiting from it.

So your reports here in this magnificent forum will reach everyone with ms one way or another, and when they read what is unfolding here they too will begin to ask "why no one informed us about this earlier?" "Whose vested interests kept this from us?"

None more so than the Foundation For Sudden Infant Death Syndrome!

Erika

Please avoid sitting at computer for long periods, this is not good practice.

Limit yourself to an hour max and then move around for half an hour if you must return to the computer.

Make sure your seat is higher than your knees so the incline can still work during the day.

Andrew

Sandra
Johnson


Thank you for adding your voice. You are not by any means alone in experiencing problems during the night and in the morning.

And MS is not by any means the only neurological conditons that follows the same pattern.

Andrew

Dear Andrew,
yes, this is only my fault because it is only up to me to make longer brakes.
I made my chair higher only now.
I aslo have to say that the weather three days ago was really bad - cloudy and raining. Even healthy people were complaining about beeing tired.
Of course I can not blame the weather all the time.
On the other hand, it is sunny now and I feel better.
I thought only old people are complaining about bad weather.

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

For the first night, I slept with my arms downhill. It was very hard! I am not used to this position at all, but because of how weak my arms were getting, I decided that it had to be done. BOY DO THEY FEEL GREAT! I've been up for over an hour and the numbness and tingling still have not set it. Plus, they feel so strong that I think I could keep them up in the air for a very long time today (not that I will)!

I feel a cognitive difference and there is no headache. My husband has reported feeling better as well. He takes Provigil and Ritalin for "hypersomnia" during the day, and he says that he doesn't need the afternoon dose until almost evening, in which case he doesn't take it because it will keep him up at night.

We have a little home blood pressure monitor. Would you like me to take his blood pressure daily? he is on medication for this.

Shannon, the Blood pressure readings will be very helpful if you can post a weekly review of BP once a day it would be great to see his bp readings.


Clearly from the posts we have received from people with ms who have recently tilted their beds there is an effect that reflects the pilot studies perfectly.

I just wanted to chime in - we have been on IBT for almost two weeks now, a week at 4", and the past 5 days at 6". So far no changes either good or bad. It was surprisingly easy to get used to the incline.
I want to comment on mattresses, since we have been using a 'Swedish memory foam' type mattress for the past 8 years. If you can afford one, these mattresses are incredibly comfortable, and very kind on your back.

We have been on the incline 10 days now.

Blood pressure (day 5) 107/71
Blood pressure (day 8) 108/74

I take Avapro nightly for high blood pressure. These readings are lower than I remember from my pre-incline levels.

Like Erika, my back has been worse upon waking the past 3 days. I fractured my back (at T12) 3 years ago and the pain in my back is in the same area. I have increased vit D to 5,000 to see if it helps my back.

I have also had quite a few long stretches of wakefulness after falling asleep for the past few days. Falling asleep is not a problem, but it certainly was in my pre-incline days.

Last night I tried to keep my arms down and was mostly successful. No differences in sensation today.

Interesting research we are all doing!

~ Sandra

_________________
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

tzootsi

Thanks for chiming in Welcome onboard.

The first week at 4 inches will not count, other than helping you to adjust, but no doubt better than sleeping flat.

Second week you should be able to determine the difference between sleeping flat and sleeping on an incline.

Weight distribution for example, we noticed the mattress seamed softer, we also felt warmer in bed and over 4 weeks a general feeling of well-being with more energy and waking up feeling rested. But this was for two people that did not have ms.

Later began to explore changes by running around, walking up local hills where we needed a rest with heavy shopping, yet for some reason this was no longer the case.