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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Breathing.

Fuzzyhead

Senior Member
Messages
372
Does anyone else feel like they can't get a full breath? I think it's anxiety but it scares me every time. I feel like it's hard work to breath and the back of my throat feels like when i have been exercising hard. (Don't know if that makes sense?)
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
This has been one of my most concerning symptoms, long-term.

To me, it feels like I am taking a full and complete breath -- that my lungs are expanding all the way, in other words -- but that this still isn't enough air. I did extensive health diary work to determine if this symptom was related to anxiety and I determined that it is related to:
  • weather
  • time of year
  • hormonal cycle
  • immediate environment / air quality
...but not whether something had been stressful in the past 24 hours.

I can tell when it's coming long before I breathing is noticeably difficult, because my rib cage aches: I attribute this to trying to take deeper breaths than is 'normal'.

Eventually, I also figured out this was related to:
  • food allergies!
...particularly milk. Dropped milk and the issue didn't drop off my radar, but it became so much easier to breathe! Apart from that, it may well be a cell metabolism issue for me.

I take Vitex agnus-castus to help regulate hormones, but it's also reputed to be a mitochondrial protectant, and an anti-inflammatory specific to the lungs. It is one of those supplements I (maybe literally) can't live without. If I drop it a few days in a row, the problem has 100% returned.

The other thing that I've noticed has helped is high doses of Coenzyme Q10. That makes me think it's a cell metabolism issue, in part. If your cellular respiration, which requires oxygen, is flagging, your body may be sending you signals saying you're suffocating... even when too little oxygen isn't actually the problem.

Just my 2 cents -- be well aware that coenzyme Q10 is really a cofactor in cellular respiration and Vitex has some research saying it does the above, but the connection to ME and why these work is based on my own speculation.

-J
 
Messages
8
Location
Alabama US
I would describe it differently. Sometimes I am so exhausted that I can feel the energy I use with each breath. Sometimes I even feel I don’t have the energy to draw another breath, scary!

For me it’s not related to anything but exhaustion, so tired I have to plan my steps to the fridge or bathroom, I don’t have the energy to waste a single step or motion. This is why I keep peanut butter and crackers on my kitchen table. At times like these directions on a microwave dinner are too complicated. I simply watch the shadows creep across my walls as the sun moves across the sky, willing myself to breath.

Yes, I understand what you are describing... :(
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
Does anyone else feel like they can't get a full breath? I think it's anxiety but it scares me every time. I feel like it's hard work to breath and the back of my throat feels like when i have been exercising hard. (Don't know if that makes sense?)

Anxiety can make it worse, but I don't think it's anxiety that's the primary issue.

I have experienced this as well, even during times of total relaxation. I'm now "anxious" to try high doses of Co-Q10 as mentioned above.;)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I had a lot of breathing issues until I was finally diagnosed with MCAS. being on meds for that illness, plus using a mask if around chemicals/perfumes, if able to clean I no longer have any breathing issues at all

Two years ago I spent three months sitting in a chair struggling for each breath, the Drs could find nothing worng with me, but we now know it was caused by the MCAS - it was VERY scary.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I used to feel this quite often until I realized it was related to OI, low BP, and staying upright too long. Since I have been bedbound so much more I haven't had this problem unless I stay up too long. If OI is the cause for you then it might be related to lack of blood in the upper organs.

When this effect happens I don't get any feeling at the back of my throat but do have the inability to take a deep or satisfying breath. Sometimes I can sneak a deeper breath by suddenly inhaling. Lying down is the best remedy since the breathing problems are a sign that my body needs to lie down so the blood can circulate properly.
 

Dechi

Senior Member
Messages
1,454
Does anyone else feel like they can't get a full breath? I think it's anxiety but it scares me every time. I feel like it's hard work to breath and the back of my throat feels like when i have been exercising hard. (Don't know if that makes sense?)

Yes, I had that about 10 days ago, and it lasted 4-5 days. In my case it was anxiety driven, but it took ,e a while to realize it. The more I stressed over it, the worse it was.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Sometimes I can sneak a deeper breath by suddenly inhaling. Lying down is the best remedy since the breathing problems are a sign that my body needs to lie down so the blood can circulate properly.

I know I have POTS, but when I lie down I feel worse, like I'm fighting against a weight on my chest. (Sounds like congestive heart failure, I know. But so obv not!) It does seem to get better when I'm less active, though. When it was worst, I'd go lie down, but propped up on a bunch of pillows.
 

me/cfs 27931

Guest
Messages
1,294
Low-dose Naltrexone (LDN) helped my breathing and other ANS symptoms. I'm currently on LDN 9mg/day.

I didn't notice the benefit until I had reached 4.5mg.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I know I have POTS, but when I lie down I feel worse, like I'm fighting against a weight on my chest. (Sounds like congestive heart failure, I know. But so obv not!) It does seem to get better when I'm less active, though. When it was worst, I'd go lie down, but propped up on a bunch of pillows.

Could your BP have risen when lying down to cause that effect? Some people can't lie down when they take too much of certain BP raising meds because their BP rises too much when they lie down.

I don't have POTS. The closest description I can find is 'Orthostatic narrowing of pulse pressure' which means that when I'm upright, my pulse pressure gradually narrows and my heart rate very slowly rises to try to compensate for lack of blood in my upper body. My BP when lying down averages 80/50. It rises a little when upright but then the narrowing of pulse pressure starts. I can be upright for roughly 45 mins before other symptoms (such as the start of shallower breathing) warn me that I need to lie down for at least an hour before I can be upright again.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I shouldn't, but sometimes I use OI and POTS interchangeably! (oops) For those who aren't sure what I mean, POTS is a kind of orthostatic intolerance. It's the kind I have, so sometimes I use it more generally than I should.

Could your BP have risen when lying down to cause that effect? Some people can't lie down when they take too much of certain BP raising meds because their BP rises too much when they lie down.

I just read that high blood pressure when lying down is a sign of adrenal insufficiency! (What? Why?)

I also encountered this: "However, people with postural hypotension due to neurological disorders usually have higher blood pressure when lying down." (Okay... why?)

This also happens in something called autonomic dysreflexia, which occurs after a spinal cord injury. https://www.ncbi.nlm.nih.gov/pubmed/?term=autonomic+dysreflexia

Interesting -- might be something to look into for that small but significant percentage of us whose issues started after a serious injury.

-J
 

Gondwanaland

Senior Member
Messages
5,092
Eventually, I also figured out this was related to:
  • food allergies!
...particularly milk. Dropped milk and the issue didn't drop off my radar, but it became so much easier to breathe! Apart from that, it may well be a cell metabolism issue for me.

I take Vitex agnus-castus to help regulate hormones, but it's also reputed to be a mitochondrial protectant, and an anti-inflammatory specific to the lungs. It is one of those supplements I (maybe literally) can't live without. If I drop it a few days in a row, the problem has 100% returned.
Whenever I have the "asthma" feeling (and I don't have asthma) I know it is from salicylates / phenols / nitrates. Estradiol is a phenol... I think Vitex inhibits aromatase and lowers estradiol production.

The only things that help me with salicylates (plant hormones) is magnesium oxide and B5. Phenols deplete B1, and there will be a need to replenish it, but I have not yet ascertained whether B1 directly helps with food allergies.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Whenever I have the "asthma" feeling (and I don't have asthma) I know it is from salicylates / phenols / nitrates.

But this blows my mind @Gondwanaland ! Phenols would be in every fruit and every veggie! How would it be possible to avoid such a thing?

Estradiol is a phenol... I think Vitex inhibits aromatase and lowers estradiol production.

Estrogen is lowest right before menses, which is when my breathing problems are worst. We'd be seeing a drop in breathing problems at that time if this were the case. When I take Vitex, it helps with this.

The only things that help me with salicylates (plant hormones)

But salicylates are really ubiquitous too.

Phenols deplete B1

Cite!

I know you've done lots of research on this stuff, but I'm a primary source kind of gal. ;) <3

-J
 

Gondwanaland

Senior Member
Messages
5,092
How would it be possible to avoid such a thing?
I don't think anyone should avoid them, but must be careful if deficient in nutrients that help to process them.

https://medlineplus.gov/druginfo/natural/965.html
Are there interactions with herbs and supplements?
Areca

Areca (betel) nuts change thiamine chemically so it doesn't work as well. Regular, long-term chewing of betel nuts may contribute to thiamine deficiency.
Horsetail
Horsetail (Equisetum) contains a chemical that can destroy thiamine in the stomach, possibly leading to thiamine deficiency. The Canadian government requires that equisetum-containing products be certified free of this chemical. Stay on the safe side, and don't use horsetail if you are at risk for thiamine deficiency.
Are there interactions with foods?
Coffee and tea

Chemicals in coffee and tea called tannins can react with thiamine, converting it to a form that is difficult for the body to take in. This could lead to thiamine deficiency. Interestingly, thiamine deficiency has been found in a group of people in rural Thailand who drink large amounts of tea (>1 liter per day) or chew fermented tea leaves long-term. However, this effect hasn't been found in Western populations, despite regular tea use. Researchers think the interaction between coffee and tea and thiamine may not be important unless the diet is low in thiamine or vitamin C. Vitamin C seems to prevent the interaction between thiamine and the tannins in coffee and tea.
Seafood
Raw freshwater fish and shellfish contain chemicals that destroy thiamine. Eating a lot of raw fish or shellfish can contribute to thiamine deficiency. However, cooked fish and seafood are OK. They don't have any effect on thiamine, since cooking destroys the chemicals that harm thiamine.
http://www.medicalnewstoday.com/articles/219545.php
Interactions with vitamin B1
Tea and coffee contain tannins, chemicals that may interact with thiamin, making it harder to absorb.

Some of the chemicals in raw shellfish and fish can destroy thiamin, potentially leading to a deficiency if eaten in large quantities. Cooking destroys these chemicals, but it destroys thiamin too.

Foods containing vitamin B1 should not be overcooked.
Thiamine deficiency and its prevention and control in major emergencies WHO (page 28)
Thiamine is water soluble and is susceptible to destruction by several factors including:
  • neutral and alkaline conditions
  • heat
  • oxidising and reducing agents
  • ionizing radiation
Thiamine is stable at low pH (pH under 7), but decomposes when heated particularly under nonacidic
conditions. Protein-bound thiamine, as found in animal tissues, is more stable. Thiamine is
stable when stored frozen; however, substantial losses occur during thawing.

Table B, Annex 3, shows examples of thiamine losses in food processing. Losses of thiamine
during the commercial baking of white bread, which is between 15 to 20%, is partly due to the yeast
fermentation which can convert thiamine to co-carboxylase which is less stable than thiamine (Berry
Ottoway,1993). According to a study reported by Marks (1975), the loss in the crust was 30% and
that in the rest 7%; rusks, baked twice, lost 40–50%.

Thiamine is very sensitive to sulphites and bisulphites, especially at a high pH. Consequently there
are large losses of the vitamin in vegetables blanched with sulphite, and in meat products where
sulphites and bisulphites are used as preservatives. Berry Ottoway (1993) reported a thiamine loss
in cabbage of 45% in sulphite-treated blanching water compared with 15% in untreated water.

Where the pH is low, such as in citrus fruit juices, thiamine losses are considerably less. The
practice of adding sodium bicarbonate to peas or beans for retention of their colour in cooking or
canning results in large losses of the vitamin due to the alkaline environment.

Thiamine is also decomposed both by oxidizing and reducing agents eg. in the presence of copper
ions. A comprehensive study of heat processing in tin and glass containers showed significant
losses of thiamine; 50% of thiamine was retained after processing and the levels reduced to between
15–40% after 12 months storage (Berry Ottoway,1993). Prolonged dehydration of fruits and
vegetables resulted in a loss of 30–50% of thiamine (WHO, 1967).

Thiamine is also cleaved by residual chlorine in proportion to the rise in temperature, rise in pH and
...
p. 31
Heat-stable thiamine antagonists occur in several plants; ferns, tea, betel nut. They include polyphenols; these and related compounds are found in blueberries, red currants, red beets, brussel sprouts, red cabbage, betel nuts, coffee and tea (Hilker and Somogyi, 1982). They react with thiamine to yield the non-absorbable thiamine disulfide. In addition, some flavonoids have been reported to antagonize thiamine as well as haemin in animal tissues. (See Table 15).
ThiamineWHO.jpg
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
p. 31
Heat-stable thiamine antagonists occur in several plants; ferns, tea, betel nut. They include polyphenols; these and related compounds are found in blueberries, red currants, red beets, brussel sprouts, red cabbage, betel nuts, coffee and tea (Hilker and Somogyi, 1982). They react with thiamine to yield the non-absorbable thiamine disulfide. In addition, some flavonoids have been reported to antagonize thiamine as well as haemin in animal tissues. (See Table 15).

I see; thank you @Gondwanaland -- I just don't see how a human could avoid polyphenols in the diet. I guess as they say, you might want to avoid drinking strong coffee with your vitamins, but polyphenols and phenol-based compounds are impossible to avoid altogether.

:)

-J
 

Gondwanaland

Senior Member
Messages
5,092
I just don't see how a human could avoid polyphenols in the diet.
https://www.ncbi.nlm.nih.gov/pubmed/27695291
In a diet devoid of carbohydrates (bread, pasta, fruit, and rice), free from goitrogenic food, and based on body mass index, the distribution of body mass and intracellular and extracellular water conducted for 3 weeks gives the following results: patients treated as above showed a significant reduction of antithyroid (-40%, P<0.013), anti-microsomal (-57%, P<0.003), and anti-peroxidase (-44%, P<0,029) Abs.
Food for thought.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
V. interesting @Gondwanaland! But I don't see any mention of phenols or polyphenols there, and what the carbohydrate-rich foods mentioned have most in common (or at least on the surface of things) would appear to be their carb content. It is super-fascinating that this seems to decrease signs of autoimmunity though -- I wonder why?

Here is their explanation:

It is worth to note that 83% of patients with a high level of autoantibodies are breath test positive to lactase with a lactase deficit higher than 50% (personal communication). All these support our results, because the reduction of simple and complex carbohydrates in the diet, as we have done in our dietary plan, probably reduces the translocation of the ChREBP protein, a phenomenon necessary to induce transcription of genes involved in lipogenesis. In fact, a recent study reported that ChREBP is necessary to induce L-PK and ACC glucose-dependent genes, suggesting the probable existence of other transcriptional regulators in the liver different from LXR.3036

After all, glucose is not only a primary carbon source for anabolic and catabolic purposes, but also serves as a signal in the regulation of metabolic gene expression. In this sense, ChREBP is a transcriptional factor that responds to glucose signaling.37,38

ChREBP mRNA is most abundant in tissues in which lipogenesis is highly active.3942 In hepatocytes and adipocytes, ChREBP-α expression is induced by glucose.4246

ChREBP regulates a high number of genes encoding glycolytic enzymes, most of the genes involved in NADPH generation, and genes that play roles in regulating metabolic and energy homeostasis.47,48 In summary, ChREBP/Mlx represents the principal transcription factor in the upregulation (in a glucose-dependent manner) of genes involved in glucose uptake, glycolysis, and lipogenesis in metabolic tissues such as the liver and brown and white adipose tissues.

Understanding the role of ChREBP in the various tissues will provide important insight into the pathogenesis of metabolic syndrome.