CCSVI - do you think exercise would help?

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

Postby CRHInv » Sun Oct 18, 2009 11:25 am

vendredi5h - I wonder about this too, but my experience is that I am at my best while I am moving. Lying down isn't bad, although I wake up congested and with a slight headache. Sitting is really not so good, especially at the computer, or head down doing paperwork. Moving is good. If I wasn't so tired, I would try to walk around all day, but of course that isn't going to happen. I go for a good walk/run every morning. I even had a moment awhile ago where my head just cleared. No more sea shell noise. I feel so much better, although my thinking is still off.
So, maybe, it depends on each persons degree of stenosis. Just a thought.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby TFau » Thu Feb 04, 2010 9:02 am

Hi Everyone:

I'm just wondering, for those who have been treated for CCSVI, have you noticed that you can exercise a bit more than before, and can you tell if you are having any lasting benefits, such as less foot drop, for example, for the workout?

Thanks,
Theresa
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Postby ErikaSlovakia » Thu Feb 04, 2010 11:01 am

TFau wrote:Hi Everyone:

I'm just wondering, for those who have been treated for CCSVI, have you noticed that you can exercise a bit more than before, and can you tell if you are having any lasting benefits, such as less foot drop, for example, for the workout?

Thanks,
Theresa

Hi, yes I can exercise more but I am sleepy almost whole day and my fatigue is worse.
Next week I go 3 times and then I must have more rest.
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 LR1234 » Sun Feb 21, 2010 12:20 pm

Hey all,
How many of you are able to work up a sweat before the pain of your limbs sets in? I am trying to get my exercising going since my CCSVI.
I have noticed after exercising for the first time today that I don't seem to be getting dizzy like I used to. (I hope that lasts)
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Postby kc » Sun Feb 21, 2010 12:48 pm

I noticed that my exercise tolerance depends on the weather. Too cold too hot ut oh. But Last summer I made myself do our exercise bike. I needed help getting on it and my feet would "pop" off. Well I have since done it almost everyday since. I have to pedal backwards though until like the last 3 or so weeks. I think this may have something to do with ibt (since 12/10/09)
Now just yesterday I did two miles with a combo of both front and backwards pedaling. (Then I was able to go to the movies AT NIGHT) I can tell when my legs need more circulation, they start to hurt. Also, through out the years I have done my chi machine. (where u put your ankles in slots and the machine moves them back and forth while you r laying down). I remember yrs ago how much easier it was to get up after i did my chi machine.
I def. think that exercise helps but then I wonder if the extra blood back up is hurting me. I look forward to the bike.
When the weathe is good i have this BRIGHT RUSTY YELLOW adult tricycle that I ride around the block. I got to the point where after 3 years of antibiotic therapy I could not even get on it. But since stopping abx 1.5 yrs ago I did ride it last summer. I look like a nut job but I love it.

So yes exercise.

kc :)

ps the exercise helps my pain
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Postby LR1234 » Sun Feb 21, 2010 1:26 pm

Thanks for replying KC.
So what other things have you tried?
So you have tried Abx
LDN?
Best Bet Diet?
Klenner protocol?
Niacin Flushes?

I have never really exercised before, I am very small and thin and people think i must work out a lot but I am sooo unfit! I just hope that exercising will help x
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Postby onesickrace » Sun Feb 21, 2010 2:22 pm

for what it may be worth. i was diagnoesd in june of 07. my balance was one of my few and mild symptoms to go. so after 21 years of skateboarding, i could no longer participate in that activity and to be honest, i really did little or nothing else as far as exercise goes. i was fit and in shape and now looking at yoga, gym memberships anything to keep up my physical abilities. i tried yoga and became to fatigued to get thru more than 20 minutes of it and then to frustrated to continue, so i tried swimming laps... and it wasnt the same enjoyment i had grown with as a kid with a river as the southern border of the family farm. so, i only went twice. fast forward 2 stagnent years and i just started stretching a bunch, doing push ups, taking a daily vitamin, and eating more health conscious foods. vegetarian on the edge of veganism. im not one to push or preach either, but i havent felt this good since i was diagnosed. energy level is up, alertness is much more refined although my feet and hands are still always next to frozen solid... i have no complaints and difinitely will continue to do my little regiment. best of luck to you...
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Postby LR1234 » Sun Feb 21, 2010 3:16 pm

Thanks one, I think I will give the exercise a go.
I am pleased to hear it has helped you, I will keep going through the pain!!
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Postby kc » Sun Feb 21, 2010 3:35 pm

LR1234 wrote:Thanks for replying KC.
So what other things have you tried?
So you have tried Abx
LDN?
Best Bet Diet?
Klenner protocol?
Niacin Flushes?

I have never really exercised before, I am very small and thin and people think i must work out a lot but I am sooo unfit! I just hope that exercising will help x


Let's see I have done the swank diet, Avonex, Copaxone, abx tx, colonics, acupuncture, amalgam removal (bye bye 20 grande) metal detox, reike, energy healing, massage, essential oils, 10s of thousands in various supplements, a program with a naturopath in ca, prokarin, and have been on 2.0mg of Low dose naltrexone since 2004. Oh and also the Niacin flushes, at first it worked great then I thought I was going to have a heart attack. 8O
I have recently gained about 20lbs. This is good I was/am 5'5 and was 109lbs.
OMG I almost forgot one of the main things that has helped me... high dose vitamin D. I took a 50,000iu of d3 and went to bed because I was scared. Within 5 minutes the muscles of my thorax relaxed. Come to find out it is a vasodilator! (among other things)
I also learned that ldn promotes angiogensis. (making of new veins).

I must say tho that I think the ibt therapy has helped a lot until I can get liberated.

I have felt better before ALSO but not ever at this time of year! Ever.

Also I have noticed thAT I can see my veins in my hands and arms again.

Pretty much betting with my history that I def have something wrong with my veins.

good luck\\

kc :D
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Postby LR1234 » Sun Feb 21, 2010 3:51 pm

Thanks KC:) So out of those apart from IBt which ones do oyu think made a difference?

This is my list so far:
LDN
ABX (which helped but liver hated it)
IBT (can't have it too high though as fiance gets swollen feet)
Best Bet Diet
Supps: Vit D 5000iu, Niacin, Multi vit omega 3's,probiotics (a few other supps)
Realised I am allergic to green tea (everytime I try drinking it I get worse)
CCSVI procedure

Currently trying
Sulphur supps and detox (including DMSA)
Infared sauna
thinking of trying Chi Machine
Exercise (yes never done that properly before)
Would like to try Klenner protocol

Is the Chi machine worth a go?
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Postby kc » Sun Feb 21, 2010 4:12 pm

Lr,

I highly recomend the chi machine. My friend paid around $400.00 for it but I got one for around $100.00 on ebay.

The things that help me: vitd, krill oil, chi machine, exercise (what I can do) ibt, ldn, proper sleep, not eating red meAT. Also I take a supp made from vegetABLES for cal mag potassium. The latter esp helps me with twitching/pain.

I taKE ambien at night for sleep, I do not want to get off it now because I know it will be hell.,

kc
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Postby Lelo » Mon Feb 22, 2010 3:12 am

The excericise is essential for me as the stretching before and after exc.
I do it in the morning when the strenght is better. The coolest place in the house is best for me for excercing. I am very heat sensitive and always during excercises I feel worse. But the feeling of nice circulation and strenght will appear soon after the last stretch.

My best advice is stick to BBD and Excercing, stretching and avoiding people that upsets you.
Love, Peace and Harmony
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Postby shye » Mon Feb 22, 2010 2:21 pm

kc,

what benefit do you get from the Chi Machine? How does it affect you?
How often do you use it?
Thanks
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Postby Cece » Mon Aug 01, 2011 3:00 pm

http://jp.physoc.org/content/545/2/697.full.pdf
Inadequate heat release from the human brain during
prolonged exercise with hyperthermia

Lars Nybo, Niels H. Secher* and Bodil Nielsen

Department of Human Physiology, Institute of Exercise and Sport Sciences and *Department of Anesthesia, Rigshospitalet and CMRC, University of
Copenhagen, Denmark

Brain temperature appears to be an important factor affecting motor activity, but it is not known to what extent brain temperature increases during prolonged exercise in humans. Cerebral heat exchange was therefore evaluated in seven males during exercise with and without hyperthermia.
Middle cerebral artery mean blood velocity (MCA Vmean) was continuously monitored while global cerebral blood flow (CBF) and cerebral energy turnover were determined at the end of the two exercise trials in three subjects. The arterial to venous temperature difference across the brain
(v–aDtemp) was determined via thermocouples placed in the internal jugular vein and in the aorta. The jugular venous blood temperature was always higher than that of the arterial blood, demonstrating that heat was released via the CBF during the normothermic as well as the hyperthermic exercise condition. However, heat removal via the jugular venous blood was 30 ± 6% lower during hyperthermia compared to the control trial. The reduced heat removal from the brain was mainly a result of a 20 ± 6 % lower CBF (22 ± 9 % reduction in MCA Vmean), because the v–aDtemp was not significantly different in the hyperthermic (0.20 ± 0.05 °C) compared to the control trial (0.22 ± 0.05 °C). During hyperthermia, the impaired heat removal via the blood was combined with a 7 ± 2 % higher heat production in the brain and heat was consequently stored in
the brain at a rate of 0.20 ± 0.06 J g_1 min_1. The present results indicate that the average brain temperature is at least 0.2 °C higher than that of the body core during exercise with or without hyperthermia.

Heat is released from the brain via the jugular venous blood.

A reduction in cerebral blood flow leads to a reduction in release of heat from the brain, combined with higher heat production in the brain. In this study, measuring hyperthermia and exercise, there was a 30% reduction in the ability to remove heat (22% from reduced cerebral blood flow and 7% from higher heat production in the brain).

I have a theory as to why increased heat affects us the way it does.
The lowering of
the head skin temperatures was not associated with a
reduction in RPE, and the degree of exertion during
exercise in the heat did not appear to be directly related to
the perception of thermal comfort. Rather, the subjects’
rating of perceived exertion seemed to increase in parallel
with the jugular and arterial blood temperatures
.

Hot brains = increase in tiredness.
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Postby Cece » Mon Aug 01, 2011 3:11 pm

another good article on the effect of exercise on cerebral blood flow (initially a 25% increase in CBF, then an eventual decrease in cerebral oxygenation due to hypocapnia and arterial desaturation.
http://jap.physiology.org/content/104/1/306.full
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