CCSVI and breathing issues/problems

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

CCSVI and breathing issues/problems

Postby Kar1 » Sat Mar 27, 2010 5:28 pm

I have been diagnised with CCSVI and am awaiting procedure. In the last 6-8 weeks my breathing has been concerning me. I am aware of my breathing now as before I was never conscious of it before. I feel I am unable to take deep breaths now, every 3-4 breaths I need to take a deep breath but that does not come naturally either after 3-4 attempts I am able to. I have become I suppose breathless and has reduced my ability to function. My Doctor said maybe its asthma but I have never had asthma and my Neurologist doesnt seem concerned when I have mentioned it to him twice in the last month. I am trying to find out if this would be related to stenosis in my jugglers. Any information is appreciated.......
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Postby jozee » Sat Mar 27, 2010 7:26 pm

I also have similar breathing challenges. Have not had testing for ccsvi yet. I do have a ms diagnosis. I find holding my nose and clearing my ears, as when you are flying on a airplane, helps restore my breathing. The breathlessness can be scary and causes a panick. I've found this technique to be helful. I hope this helps.

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Postby zen2010 » Sat Mar 27, 2010 9:29 pm

Hi Kar1,
I was also diagnosed with CCSVI and I also have breathing issues

One week ago, I tried to sing a song I like but I could not as I could not breathe enough!
The way I speak is also affected by this problem.

The idea from Jozee looks interesting as I saw many soccer players using small bandages to hold their noses in order to improve their breathing capacity.
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Postby muse » Sat Mar 27, 2010 10:07 pm

Hi Kar1, I have regularly (daily) breathing issues (elephant on the chest) as well and all is standing in direct connections with my body position (e.g. sitting in front of the pc) and the extent of my fatigue. The problems are mostly triggered by brain work and some light exercises like to get up and walk a bit around, cool pads around the neck/chest or a little amount of alcohol (1-2 glasses of wine) at night do help to getting better.

p.s. My brainstem is free of lesions and I don’t have any panic attacks. I was diagnosed with a massive stenosis (LVJ)/CCSVI in Nov. 09, no treatment yet.
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Postby Kar1 » Sat Mar 27, 2010 11:05 pm

Thank you everyone for your replies, its good to know there is a reason, because I have been panicing. I will try the hold your nose and see if it helps and yes I am an MS person who has CCSVI.
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Postby Asher » Sat Mar 27, 2010 11:33 pm

dear Kar1, undoubtedly a considerable discomfort, but thos is a common complaint among 'healthy' people too. There are a number of factors that can cause short breath. Over weight, smoking poor diet and poor overall fitness (airobic activity) are very common. But the primary cause is often stress. And stress is not in short supply for us MS patients. I would certainly experience elevated stress and anxiety in the runup to my liberation. The good news is, your breathing issue will spontaniousley fix itself.
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Postby Acheron » Sun Apr 11, 2010 11:50 am

For the last 3 weeks I have been experiencing the same breathing problems that you describe. A very annoying sensation, although I also think is anxiety related. How are you guys doing? Have your breathing problems resolved by themselves?
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Postby annad » Sun Apr 11, 2010 12:04 pm

I've had that same feeling! I didn't know what to make of it! I only get it a few times a year but that's how I described it . . . laboured and not something that I feel I can do without thinking about it. It would eventually clear on it's own after some time. If and when next time it happens, I will note my postural position.
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Postby ndwannabe » Sun Apr 11, 2010 12:35 pm

Kar1, we were just having similar discussion here

And although I agree that other factors can cause this problem , for me most of those do not apply - I am a healthy weight, do not smoke, try to exercise to my full MS-ridden ability, eat healthy and on and on and on.

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Postby Kar1 » Sun Apr 11, 2010 2:05 pm

Hi everyone, things are going better, not sure if it is related but the temperature has dropped considerably as summer comes to an end and with it most of my breathing issues. So is it related to heat or is it related to IBT. I started it a week ago and so far it is very encouraging, better sleep , less pain, more refreshed when I wake up etc. So time will tell. Thanks for everyones replies.
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Postby AMcG » Sun Apr 11, 2010 2:33 pm

I too experienced this and was helped greatly by accupuncture, massage and cupping. With me it was stiffness in the intercostal muscles in my mid and lower back. I had been stiff as a board all down my back for a long while and was treating it with accupuncture and massage. The thing that took longest to clear up was this mid/lower back thing. But I suddenly felt it give when I was on the table and having the cups. When I got home I did my peak-flow meter and my breathing went from 400 to 600! And I stayed above 500 until I got the next cold. I am currently 450 (after yet another infection) but determined to get back above 500. The treatment can be very expensive. But I would certainly recommend it if you can afford it.
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Postby jimmylegs » Sun Apr 11, 2010 2:48 pm

i have had that a few times in the past and found it would clear up nicely with a few days taking magnesium.
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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breathing and reflux

Postby 1eye » Mon Apr 12, 2010 3:27 pm

I have read here that reflux happens when you take a breath (so don't breathe, I know). To me this indicates that the heart muscle contraction normally there only to pump blood into your lungs, is partly being used to push venous blood the wrong way up your jugulars, to your brain, and that for some reason any valve that should prevent this is open. Breathing and heart beats are not always synchronized, and heart beats are not voluntary.

But your heart responds to a deep breath. Does it beat faster or slower? Harder or less hard?

An operation that restores the valve? It should be open when the brain is draining. Maybe the heart is pumping venous blood toward your brain when you take a deep breath.

I think the red reflux dot I saw on Zamboni's Doppler machine on TV was small, and in the middle. It indicated blood going the other way (pumped by the heart?). So maybe a valve that should be open when you're draining blood from upstairs is sticky any takes too long to open. Or close.

I think many problems can be solved by opening veins. Some of these I have seen pictures of seem to be below the jugulars. That's the kind of thing they should be studying, not whether CCSVI has anything to do with MS. It IS MS.
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