Trouble Breathing/ Shortness Of Breath

[Jen]

Jamies33, yes I do eat vit k foods, a lot of cooked cruciferous veggies, kiwis, etc. A couple of years ago when I got these symptoms (though not nearly as bad), I could see how stress might have played a factor but right now I don’t have any major stressors, honestly things are really good aside from my health taking a turn so I don’t know what (emotionally) I’d be able to contribute that to.

Bart1, I don’t know where my cortisol is right now and am hoping a doc can check that when I finally get in to one. I agree it could have to do with histamines, haven’t tried cypro but I have taken antihistamines in the past and for about a week after this happened, didn’t seem to make a difference. I’m not familiar with cypro, am open to anything that might help. I am leery about just adding things into the (already a mess) mix so I have to be picky about supplements or treatments at this point, but really want to learn about which ones would be most helpful because I’ve got to find something soon.

Pinacolada, I’m happy to see an endocrinologist once I can get a referral, and will gladly tell them that to get the ball rolling. I think I may get in to a new dr today due to a cancellation which would be SUCH a relief.

 

[Jen]

Thought I needed to follow up here since I figured a bit out.

Last week I finally made a connection between the breathing trouble/pounding heart and COLLAGEN. Or gelatin/glycine...

For the last month I have been cutting out all supplements and going back to basics and introducing things one by one to hopefully find what made any differences. When I added some collagen powder back the breathing issue and heart/adrenal symptoms got bad immediately. I avoided it and things slowly improved again. Then last night I ate chicken drumsticks with the skin and apparently that was enough collagen or gelatin to cause the same reaction- I had difficulty breathing right after and couldn’t sleep, waking up with the same symptoms. The one time in the past I had these issues was when I tried the gaps diet for autoimmune which relied heavily on bone broth and gelatin as well so that makes sense now.

I’m happy to figure out the worst of it but I’m so confused as to WHY I’m getting this reaction from it (a google search found I’m not the only one who’s had a reaction like this to collagen but most people, obviously, get the opposite-nice benefits, better sleep, etc...)

Any ideas on what the heck is going on? Everything I’ve read and every doc I’ve had suggests using collagen/gelatin/bone broth for gut and body healing. If that’s out, I’d love to know why or what to do about it.

 

[LUH 3417]

Thought I needed to follow up here since I figured a bit out.

Last week I finally made a connection between the breathing trouble/pounding heart and COLLAGEN. Or gelatin/glycine...

For the last month I have been cutting out all supplements and going back to basics and introducing things one by one to hopefully find what made any differences. When I added some collagen powder back the breathing issue and heart/adrenal symptoms got bad immediately. I avoided it and things slowly improved again. Then last night I ate chicken drumsticks with the skin and apparently that was enough collagen or gelatin to cause the same reaction- I had difficulty breathing right after and couldn’t sleep, waking up with the same symptoms. The one time in the past I had these issues was when I tried the gaps diet for autoimmune which relied heavily on bone broth and gelatin as well so that makes sense now.

I’m happy to figure out the worst of it but I’m so confused as to WHY I’m getting this reaction from it (a google search found I’m not the only one who’s had a reaction like this to collagen but most people, obviously, get the opposite-nice benefits, better sleep, etc...)

Any ideas on what the heck is going on? Everything I’ve read and every doc I’ve had suggests using collagen/gelatin/bone broth for gut and body healing. If that’s out, I’d love to know why or what to do about it.

I think bone broth is high in histamine. Especially if it’s cooked for a while. I always see it listed on the avoid list of histamine intolerance diets.

 

[Jen]

I read up on histamines and this made sense. I have been taking antihistamines and avoiding the collagen/gelatin and symptoms were better. I was so happy, at least I felt like I had some control.

THEN tonight I am falling apart again. Despite taking antihistamines now. I have a pain in my chest and it feels like I can’t catch my breath, I can’t sleep, am jerking awake because I stop breathing. I don’t know what to do. I feel SO bad.

I will point out that this is happening again on day 1 or 2 of my period, same as my ER trip in February. Both times I had just started my period. The first time was after taking progesterone and getting a suffocating feeling. I thought both progesterone and estrogen were low at this time. I don’t know if it’s hormone or histamine or both? I searched and found a thread of other women saying the same thing but zero answers: Shortness of breath with PMS - Women's Health - MedHelp

Any insight would be appreciated. I’m too afraid to go back to the ER and be told it’s anxiety again, they didn’t see anything in ekg or blood tests that stood out and don’t listen. My chest and back are killing me and I’m honestly feeling terrified, really don’t know what to do.

 

[LUH 3417]

I read up on histamines and this made sense. I have been taking antihistamines and avoiding the collagen/gelatin and symptoms were better. I was so happy, at least I felt like I had some control.

THEN tonight I am falling apart again. Despite taking antihistamines now. I have a pain in my chest and it feels like I can’t catch my breath, I can’t sleep, am jerking awake because I stop breathing. I don’t know what to do. I feel SO bad.

I will point out that this is happening again on day 1 or 2 of my period, same as my ER trip in February. Both times I had just started my period. The first time was after taking progesterone and getting a suffocating feeling. I thought both progesterone and estrogen were low at this time. I don’t know if it’s hormone or histamine or both? I searched and found a thread of other women saying the same thing but zero answers: Shortness of breath with PMS - Women's Health - MedHelp

Any insight would be appreciated. I’m too afraid to go back to the ER and be told it’s anxiety again, they didn’t see anything in ekg or blood tests that stood out and don’t listen. My chest and back are killing me and I’m honestly feeling terrified, really don’t know what to do.

Sorry to hear you are not doing well. Have you been able to have BMs?

 

[Jen]

Yes, been okay there

 

[TeaRex14]

Hey again, I'm sorry your issue continues to linger. What you describe is almost an hallmark case of low CO2 and lactic acid buildup suppressing respiration. I know I briefly touched on b vitamin status with you a while back, did you ever take the b complex? You may need much more thiamine then what a complex offers you. A typical complex gives what, about 50-100mgs on average? Someone with chronic builup of lactate needs much more. I would try dosing pure thiamine hci at 1,200mgs, split into 300mgs dosages 4 times a day. Morning, late morning, early evening, and evening are great dosing times. That way your tissues stays saturated throughout the day. Taking pure biotin 5mgs twice daily, and 500mgs of niacinamide three times daily will also greatly assist this whole process of restoring CO2. If you're symptoms are still bad or getting worse, then you don't have anything to lose in trying it. A person also mentioned bag breathing, that may help in emergency situations as well by increasing serum CO2. But increasing cellular CO2 will have the best and most profound benefits.

 

[Jen]

I was taking a (weak) complex but doubt I’m getting these levels. I will go this morning and get the pure versions separately and dose as you suggest. You’re right, I really have nothing to lose and I’ll do anything at this point. Thank you.

 

[TeaRex14]

I was taking a (weak) complex but doubt I’m getting these levels. I will go this morning and get the pure versions separately and dose as you suggest. You’re right, I really have nothing to lose and I’ll do anything at this point. Thank you.

Great, I hope it helps you. B vitamins work fairly quickly, so by tomorrow you should already notice some improvement if this is the issue. You may notice a slight improvement within the first few hours, hard to say.

 

[komorebi]

I'm sorry to hear you're going through such a hard time. I had a similar experience a couple of years ago that lasted for a month, and it was the worst thing I've ever been through. I still experience shortness of breath sometimes, but it's rarely more than a nuisance now.

@Rafael Lao Wai and @pinacolada have already mentioned intestinal irritation and pressure as potential causes, and I'm pretty sure that's the primary cause for me as well. The main trigger in my case is fiber. Carrots, bamboo shoots, and mushrooms are tolerable and even seem to help in the medium- to long-term, but every other fiber I've tried triggers an attack. Even the residual fiber in no-pulp OJ is a problem, so I let it settle and avoid drinking it. The effect can be delayed by hours and last for at least a day afterwards, so the causal link may not be obvious.

Eggs, oysters, gelatin, and more than 1 oz per day of beef liver are also triggers, so I suspect that histamine and other biogenic amines are also a factor. Incomplete digestion could also be the problem with the gelatin, and with any meat that's not cooked in such a way as to be tender. Cold milk can cause problems; I heat my milk and OJ to the maximum temperature that's comfortable to drink.

Wishing you the best, I hope you find something that helps and feel better soon.

 

[Jennifer]

Hi @Jen, may I ask how you're doing? Did you figure out what was causing your symptoms?

 

[Jen]

Hi, I am much better now.

I think what caused the start of my issues were histamines. I had kinda jumped into peating and started eating a good amount of carbs after years of keto/paleo. Then I added a collagen/gelatin powder and I’m guessing my body couldn’t handle the histamines in it. I had been running on adrenaline and cortisol for so long, had had ibs-d for all of my adult life so digestion was bad, and then probably very low on all my vitamins due to poor absorption, high estrogen, unhealthy liver as I had no glycogen storage. I was a mess.

The shortness of breath was the first symptom after I started the collagen and then it just snowballed. My biggest issue being what I think was super high cortisol keeping me awake, shaking, racing/pounding/skipping heart, cold sweating...all of the worst symptoms. My body would seriously jerk awake violently whenever I fell asleep, it was awful.

In all honesty the very first thing that helped me was a Xanax. I had about 3 scripts for it by then from docs who said I was just having panic attacks. I remember being mad with that result but in desperation one night took one and it calmed my system enough to rest a few hours.

Then from the advice here I started eating small amounts whenever I felt bad including every time I woke up in the middle of the night which was a lot, continued getting enough carbs and protein, upped my salt intake. It wasn’t easy to even eat at first because I felt so sick but it helped and got easier. I also took b vitamins which helped a ton (I had already been taking magnesium,vitD,vitK2) Added coffee back in slowly, kept up with the antihistamines until my symptoms went away. Sat in front of a heat lamp or in the sun whenever I got cold. And then eventually added some protest-e which helped with the estrogen symptoms slowly (and if I understand correctly, helped with the histamine issue). After a month I had improved a lot. I feel great now, although I have put on 15 lbs and carried it for almost a year. Small price to pay for the improvement in how I feel so I’m just being patient and letting my body heal. I’m currently taking:

Morning-
200 mg magnesium
5000 iu vit D
100 mcg vit K-2
B vitamin complex

Evening-
500 mg niacinamide
100 mg thiamine
200 mg magnesium
100 mcg K-2

Before bed-
220 mg zinc
1/2 a cynoplus tablet

I also focus on diet, getting enough protein, vitamins from food, especially vitamin c, carbs and salt. Milk wasn’t easy at first but now I drink it with no problems and rely on it a lot. At first I had stuck to only the few most peaty foods but now I eat a wide variety and regular meals including well cooked veggies. Still stay away from PUFA and wheat.

When I first started taking the cynoplus (1/4 tablet) I couldn’t even handle it, the adrenaline symptoms came back. I gave myself a little more time and b vitamins, coffee, anything to help liver and eventually was able to work up to a half tab.

Im still not sure if the doses/supplements I’m taking are right, I just figured since I’m feeling good, I wouldn’t change anything. When I try different things constantly it’s too hard to decide what’s working and what isn’t.

I’m still open to opinions about what I’m doing as I’m by no means an expert on any of it but I figured I’d put down all the info I could in case it can help someone else. The help I got from this forum (and nathan hatch who I reached out to and was kind enough to email me back with help at that time also) really meant the world to me. I didn’t know where to turn and the doctors I had seen were no help (actually made me feel like I was just crazy.) SO grateful for the community and information here. Hope that helps.

 

[Jennifer]

Oh good! I'm glad to hear you're doing so well, @Jen! I was having the same symptoms as you (plus, passing out), and even had the same experience at the ER, but it seems the cause was different. My doctor prescribed me l-theanine (said it's like a natural Xanax) and I tried Benadryl, but both brought on adrenaline attacks. I finally convinced her to prescribe me NDT and within the first dose the attacks stopped — they started after a bought of sleepless nights from taking B vitamins — but it has been over 4 months and the shortness of breath has only gotten worse (as well as my CO2 and oxygen saturation) to the point that my hands are now turning blue.

Unfortunately, I go to the hospital and I'm told that everything looks perfect and there isn't anything they can do for me beyond the standard tests, that I would need to see my doctor but when I call my doctor's office, her nurses tell me I need to go to the hospital so while waiting for my doctor's appointment mid January, I continue to bag breath, go out for long car rides at night to get cold air into my lungs, get lots of easy to digest sugars and nutrients from fruit juice, coconut water, herbal infusions, shellfish, eggs and gelatin, salt etc. Anyhow, it sounds like you're doing right by your body. I'm really happy for you. :) It's a frightening thing to go through.

 

[Jen]

I am so sorry to hear all that. Getting passed around between doctor and hospital visits without answers is the worst. Not being able to breathe is scary and if your hands are turning blue I’m saddened to hear they aren’t taking it more seriously. I wish I had an answer for you. We don’t sound that different though, when things were bad I was passing out as well. NOT a good feeling.

Every now and then I still feel some adrenaline symptoms or short of breath but so far its short lived. I turn to salt when I get the adrenaline. I use maple syrup and fruit a lot more than white sugar now too. The sugar was a problem in the beginning, don’t know if it was competing for something or what but maple syrup has a lot of little extras (like manganese) that helped me feel better. I’m glad that thyroid seemed to make you feel better, for me it made me feel worse at first but only because I was deficient in vitamins/nutrition. If we look at food as medicine, maybe sometimes these peaty foods work too well- I dove all in to the peaty foods and think it was too much all at once. I was focused on only eating shellfish, gelatin, beef, dairy, OJ, etc... maybe my body wasn’t ready for it? I think a lot of people in this forum are really restricted with foods but I felt better when I stepped back, ate more balanced like I used to, and added the peat focused foods in slowly.

I really wish I knew what else I could tell you to help. I still feel like I have a lot to learn from this forum but I’m really glad I was able to turn here and get help when I couldn’t find it anywhere else. Hopefully someone can give you some more scientific based suggestions of things to do. I hate to hear about anyone going through this. I look forward to hearing of your improvement.

 

[Jennifer]

Thanks for your response and for caring, @Jen. I appreciate it. :) I'm so glad to hear the adrenaline and shortness of breath are short lived now. That's wonderful news! I'm happy to say I no longer resemble a smurf and can finally breathe. Things had gotten so bad that just the act of eating had me on my knees gasping for air so after 12 years of fighting to overcome injury and illness, the last 5 months of them fighting just to breathe, I was so worn out, emaciated and in pain that I finally gave myself permission one day to stop trying and started packing up my belongings so family wouldn't have to if I passed away. I ended up going all day without eating and by evening, I found I could breath. It turns out that the food I thought relieved the shortness of breath actually caused it. I changed my diet and have been breathing fine ever since. Not only am I feeling incredible, I ended up achieving a dietary and lifestyle goal I had been working toward for years but with a heavy heart, had to abandon almost a year ago.

 

[InChristAlone]

Thanks for your response and for caring, @Jen. I appreciate it. :) I'm so glad to hear the adrenaline and shortness of breath are short lived now. That's wonderful news! I'm happy to say I no longer resemble a smurf and can finally breathe. Things had gotten so bad that just the act of eating had me on my knees gasping for air so after 12 years of fighting to overcome injury and illness, the last 5 months of them fighting just to breathe, I was so worn out, emaciated and in pain that I finally gave myself permission one day to stop trying and started packing up my belongings so family wouldn't have to if I passed away. I ended up going all day without eating and by evening, I found I could breath. It turns out that the food I thought relieved the shortness of breath actually caused it. I changed my diet and have been breathing fine ever since. Not only am I feeling incredible, I ended up achieving a dietary and lifestyle goal I had been working toward for years but with a heavy heart, had to abandon almost a year ago.

Great to hear you can breathe again Jennifer! Did you go back to fruitarianism? How emaciated are you? The health community just lost a lady to orthorexia/anorexia so I just hope that isn't happening to you. She would only eat health food and was very emaciated for years.

 

[Jennifer]

@sugarbabe — Thanks, Janelle! :) And thank you for your concern. I'm sorry to hear about that woman's passing. So sad. I do still eat predominantly fruit because it's what I crave but unlike before, I can now eat a variety of other plants (even fibrous veggies and starch) without suffering, I suspect because of the NDT. I dropped more than 10 lbs from this whole ordeal but thankfully within days of changing my diet, food stopped going right through me so I no longer look like the walking dead. My period also returned within days and the burning pain in my spine disappeared so things are definitely moving in the right direction. I want to trial eggs again and a specific concentrated plant protein in the near future but other than that, I think I found a good balance with my diet, at least for now.

 

[InChristAlone]

@sugarbabe — Thanks, Janelle! :) And thank you for your concern. I'm sorry to hear about that woman's passing. So sad. I do still eat predominantly fruit because it's what I crave but unlike before, I can now eat a variety of other plants (even fibrous veggies and starch) without suffering, I suspect because of the NDT. I dropped more than 10 lbs from this whole ordeal but thankfully within days of changing my diet, food stopped going right through me so I no longer look like the walking dead. My period also returned within days and the burning pain in my spine disappeared so things are definitely moving in the right direction. I want to trial eggs again and a specific concentrated plant protein in the near future but other than that, I think I found a good balance with my diet, at least for now.

I'm glad to hear you are on the mend! Sounds like fruit is where it's at for you!

 

[Barry]

I feel the best way to treat shortness of breath is to SLOWLY move towards a very high carb diet. you need to track your calories in cronometer to do this. fruit, honey, sugar, some coconut oil, milk. this is the diet. absolutely cut out pufa, to less than 2g per day. mixing a lot of fat and carbs leads to danger for me.

 

[Jennifer]

I'm glad to hear you are on the mend! Sounds like fruit is where it's at for you!

Thank you! Yep, it seems so. It's the one food I've been able to count on. Not always the most satisfying when it was all I could eat, but thankfully that's no longer an issue.