Breathing Problems

[Sarah4444]

I was reading the stuff on the site that Julie posted regarding Chronic Fatigue Syndrome and the author mentioned trying to increase oxygen levels by using a rebreather. According to him, breathing oxygen didn't help the brain fog experienced by people with CFS, but breathing the combination of oxygen and CO2 in a rebreather did. He said that for a cheap alternative people could wear a painter's mask an hour a day. I think his theory was that increasing O2 levels in the blood helped to fight chronic infections and also helped increase cerebral perfusion.

I think I have a couple of different breathing issues. Sometimes I have episodes of iching, trouble breathing, tachycardia and flushing that I associate with MCAD and which are helped by Benadryl. At other times though, I just get the feeling that my breathing isn't "right", that I have to concentrate on my breathing and it doesn't come naturally. I know this sounds silly, but it feels "slippery", like my breath is going in and out without being used properly by my lungs. I remember trying to read some of Dr. Stewart's work - something about POTS patients having abnormal NO levels or something and this may contribute to exercise intolerance.

Can anyone give me any info about this whole area? I have no history of asthma or allergies and have never had to think about my breathing until I got so sick last year. What does NO do in our bodies? I often get the same feeling that I'd have if I blew up way too many balloons, a kind of light-headedness/brain fog I attribute to cerebral hypoperfusion. What causes that in POTS? I've read various reports of decreased cerebral perfusion in POTS - is that supposed to be simply due to gravity/blood pressure problems or might there be other causes as well?

Any info would be welcome. I wonder if it would do any harm to try wearing a painter's mask and see what happens. Like I don't look silly enough already with the compression hose, abdominal binder, orthopedic shoes...real glamorous.

[juliegee]

Hey Sarah-

I want a photo of you with all of your gear

I've been through a rough patch recently since my brief bout with cc blckers. It seemed to have set off my MCAD & autonomic symptoms big time. YOU perfectly describe one of my breathing problems. It's like it's no longer automatic. I have to consciously remember to breathe & my lungs do not seem to get the benefit even when I try really hard. Funny, you mention a rebreather. I may have read about that & I have cupped my hands over my mouth and nose at times to see if it will help. I am not hyperventilating during these spells, but I seem to get the symptoms of hyperventilation. HOW is that possible??? Now with my diastolic dysfunction & weird pulmonary test results, I worry this is something more... I think I chalk too much up to my dysautonomia & MCAD w/o seeking real answers.

I, too, have been pouring over the Lassen stuff. He seems to chalk up alot of our symptoms to hypoxia- lack of oxygen. Indeed, many here, (Mack & I included) have weird misshapen red blood cells that go along with this theory- not to mention my two failed pulmonary tests. i suspect I an chronically hypoxic.

Here's a pretty good description of the NO deficiency from the DINET site:

Nitric Oxide deficit may play a role in POTS symptoms. Nitric Oxide (NO) is a very simple molecule whose job it is to control blood vessel size with changes in blood flow, changes in blood vessels during inflammation and blood vessel leakiness (Stewart, 2005). Some POTS patients have a deficit of nitric oxide (Stewart, Taneja, Glover & Medow, 2008.). This deficit may relate to the nitric oxide synthase molecule called nNOS, but it also has a compelling relationship with the hormone angiotensin-II. Together angiotensin-II and NO may help to regulate sympathetic nerve activity in the brain and also in certain peripheral nerves (such as the splanchnic circulation). Moreover, angiotensin-II can result in increased oxidative stress which can itself reduce NO (Dr. Julian Stewart, personal communication, November 28, 2007).

Researchers have found that NO levels can be increased by blocking the most important receptor for angiotensin-II. This may lead to treatments in the future in select groups of POTS patients.

Sorry, I'm not much help. I'm trying to sort all of this out myself. I just wanted to add a big ME, TOO!

Feel better-

Julie

[abnel]

Hi Sarah, I totally sympathise with what you are going through and I know exactly what you mean about breathing no longer being automatic. I find this to be one of the most frustrating symptoms of all and am finally going for a lung function test and to see an immunologist to sort these issues out.

When I posted last month about my breathing problems, someone kindly explained to me that a defect in the acetylcholine receptors can be the mechanism that causes breating difficulties in some POTS patients. If this is the mechanism that causes breathing difficulties, then substances like Mestinon and (strangely enough) nicotine can apparently help. I really don't know what this all means but thought I would share it with you in case it is another piece in the puzzle you are trying to solve...

[issie]

I know I don't breathe right. My husband is always reminding me to "just breathe". I think I hold my breath and then I get those "hyperventalating" epoisodes - where I can't seem to catch my breath. These eposidoes totally wipe me out. It makes me so weak I feel like I can't even pick my arms up. I don't know the answer. They checked my NO and mine was fine. NO can however be increased with natural supplements. I'll have to look it up as right now I can't remember which ones.

[hilbiligrl]

Hello all again,

As im trying to rest up from some appts, i just HAD to at least leave a comment. The breathing issues that each of you describe, is EXACTLY one of my main to bothersome symptoms and always has been from day one. It is utter torture. I never could describe it correctly to any doc. I finally started describing it as if my diaphram muscles werent working on its own and i have to concentrate hard and continuous to keep the breathing from stopping perhaps. But, as mack's mom says it, it is no longer automatic. That would best describe it for me. That phrase was exactly how i described it to my new doc yesterday (ill be posting about that soon.... lol... im slooooooow these past few weeks). He said he had never heard a breathing problem described like that.

I did have a pulmonary function test done a few years back, only for me to have passed it and i was never diagnosed with asthma, but given combivent inhaler. The inhaler doesnt work either. So i just have to pant, and try my best to keep breathing. Ugh... horrible.

All these ideas, even the Hughes syndrome of the sticky blood, to the painter's mask, all seem very worthy of looking into. I have thought to myself for the past year, if wearing a breathing mask might would help. I think i may be trying it, as im trying anything.

Why oh why can't they find the mechanism that causes this?

So grateful for all the suggestion and articles on here, cuz i bookmark them all, jot them down and am taking them to the new doc when i see him again. He's looking into the sticky blood and hughes syndrome as well as others, but i'll post more on that when i post aobut my appt with him yesterday.

Just letting you know im in the same boat.... i have to go out into the cold air alot this winter just to breathe halfway alright.... but like you all say 'it's just not right' and i can't quiet put my finger on it. The weakness/exhaustion and breathing have always been the main culprits for me since this all started years ago.

hilbiligrl

[issie]

I had pulmonary testing too. It was off some, but not real significant. (Except for sleeping at night - I need oxygen.) But, I told the doctor that Albuterol helps me. He couldn't understand why it would, but gave it to me for emergiencies. When I get real bad, I'll take a puff off of it and that helps. It increases the blood flow and increases oxygen. There is a new study in regard to MS and the fact that albuterol is helping with MS too. They do want to check me for MS with a spinal. But, I'm not ready to go there, just yet. I'm doing the diet for MS and autoimmune issues to see if that will make a difference.

[juliegee]

I had pulmonary testing too. It was off some, but not real significant. (Except for sleeping at night - I need oxygen.) But, I told the doctor that Albuterol helps me. He couldn't understand why it would, but gave it to me for emergiencies. When I get real bad, I'll take a puff off of it and that helps. It increases the blood flow and increases oxygen. There is a new study in regard to MS and the fact that albuterol is helping with MS too. They do want to check me for MS with a spinal. But, I'm not ready to go there, just yet. I'm doing the diet for MS and autoimmune issues to see if that will make a difference.

Issie-

Look into Anti-phospholipid/Hughes Syndrome. It can very closely mimic MS.

Julie

[issie]

Look into Anti-phospholipid/Hughes Syndrome. It can very closely mimic MS.

Julie

It sounds interesting - but I've not had any blood clots. I know my blood is too thick though and I have allot of the other symptoms. I have real bad vascular issues with varicose veins etc. I have the miagraines it spoke of and the easy bruising and the splinter finger nails, I also have the MS type symptoms. So, there is enough for me to ask for the two blood test to at least rule it out. I think I'd let him check for that before I have a spinal tap done. I have had what seemed to be TIA's - could have been POTS symptoms - before I got that diagnosis. It supposedly runs in families and my dad has had three strokes and has artherscloris and terrible miagraines, my mom has had blood clots and has lupus type symptoms - but doesn't check positive. So, it is a possibility.