I apologize for how long this is probably going to be. I’m so desperate for ideas I just don’t want to leave anything out.
So I’ve been having terrible breathing problems for since last September. It started out only when laying down but by mid November it had evolved to 24/7 and I have not gotten a moment of clear breathing since. It’s hard to inhale and exhale - like the airways are constricted. I get a wheeze one exhale and very seldom inhale but the wheeze sounds like it’s coming from the upper airway. Not sure though. Often feels like I csnt get a deep satisfying oxygenated breath as well. I do want to stress this isn’t episodic but 24/7. I’m only 29 and a non smoker. I’ve been to the ER so many times.
I have had multiple CT scans and X-rays that cannot find the problem. Echo good no Pulmonary hypertension Bloodwork always normal. I’ve tried all the asthma meds, allergy meds , prednisone (which seemed to make me worse) and all of that. Vocal cords seemed fine when checked.
My conditions include things like POTS, MCAS , EDS , I had small PEs about five months into the breathing issues (had multiple clean CTs before they were there and they are gone now) Myesthenia gravis also ruled out.
Here is a list of things I’m considering -
1. Chronic carcinoid or Serotonin syndrome
So I had a very tiny carcinoid in my lung that was found during the bronchoscope . It was removed a couple months ago. Usually if it were carcinoid tumours when you get rid of them the symptoms resolve but mine did not. I had a urine 5-HIAA test that was negative. BUT I have a homozygous mutation on the MAOA rs6323 which is known to drastically lower the enzyme that breaks down serotonin. I have a crazy amount of fasciculations , muscle weakness , excess saliva production. I fell from my muscles being so weak at my pharmacy about a week before my breathing issues turned into a 24/7 thing. I’ve been trying cyproheptadine but I read somewhere on this site (a photo I’ll attatch at the bottom ) of needing upward of 100mg a day fro carxinoid and the most I have taken so far was 50 and I’m hesitant to go higher. I’m not on ssris.
2. Acetylcholine overload ?
So when this all happened I was taking Huperzine A and a quercetin compelx with Ingredients also used to increase acetylcholine. And sometimes even alpha gpc While on these drugs is when the breathing problems started. Very shortly after Huperzine actually maybe a matter of a couple weeks. Some of the symptoms above I mentioned for cholinergic crisis - but especially the muscle paralysis I would wake up with sometimes where it felt as though I’d had a stroke. I’d regain movement after several minutes. The fasciculations could also be explained with this. But I’ve been off that stuff almost a year now and it hasn’t subsided with breathing. Atrovent which is an anticholinergic kind of helps a little but not even close enough for me to function. Can I rule out acetylcholine causing bronchoconstriction if even atrovent doesn’t alleviate it? Inside of my mouth also swelled up on this stuff (buccal mucosa of my cheeks). I’ve only been taking the atrovent a few days so maybe I need more time.
I still get muscle fasciculations and perhaps that’s a sign that either serotonin or acetylcholine is still too high.
3. Cortisol problems
I was on Fludrocortisone as well when this began and ceasing that didn’t help. But man oh man did prednisone make Me worse. When I started out on 60mg I was awake for FOUR days straight with major adrenaline dumps and my body would not let me sleep. I truly thought I’d die at the end of it. It made whatever issue I was having worse. I’ve had clavicle area swelling akin to cushings for years and am wondering if that just put whatever cortisol issues I had into overdrive. Cortisol always normal in urine test, maybe slow COMT and MAOA gene mutations make the results not accurate again ? I know there’s an issue with hormones , especially since I have zero labido for years now and I’m so young
4. Relapsing Polychondritis.
This one really scares me and I think the possibilty at this point is very real. Tracheobroncheomalacia is something I’ve considered because my ears will turn red and burn and wake me up with pain. My nose cartlidge is damaged and droops down to either side I lay on. Switching sides and positions alters the severity of the breathing. I had a month long pain right down my sternum a week before the breathing issues started. I started the Huperzine around the time this pain subsided. I’ve had a bronchoscope that said it was fine but I’m still not convinced they did it properly. Rheum is unconvinced this is my problem. Also no chronic cough.
5. Airway remodelling or fibrosis not being picked up on scans ? I have some kind of autoimmune issue. I know I do. Tested positive for Sjogrens but they won’t diagnose it since my “eyes aren’t dry enough”. My CRP is always elevated at 4.6. Could I just have damaged my lungs with constant inflammation? If it is fibrosis or airway remodeling how do I reverse it if I can?
6. All this BS started right after an asymptomatic covid case. I hadn’t gotten sick in years either due to an autoimmune system in overdrive or just not working. But I never get acutely sick. Could covid have damaged phrenic nerve or something? Permanent airway damage even without bad lung infection?
7. I was also taking high does of magnesium at the time around 1000mg. It was pretty overkill. A calcium issues? Blood calcium is always fine though.
8. Iron issues?
My iron serum was 12 nmol, iron sat was low at 17% and ferritin was 144 nmol but I have raised CRP so maybe even that’s low. But I don’t know if low iron would cause wheezing.
9. An interesting one - Methemoglobinhemia? Someone taking my blood commented how brownish black it looked. It’s also very slow to come out and I’ve alreayd clotted. I’m taking vitamin c around 3 grams a day to see if it can reverse it but so far not much luck.
I’m terrified how long this issue has persisted without any help. Doctors don’t know what to do and aren’t a great help. I’m depressed I may have done this to myself with all that acetylcholine stuff. I don’t think I can handle this being permanent.
I’m just looking for out of the box ideas about this and will not assume it’s medical advice , but at the same time id love to hear your opinions on what I could do next.
So I’ve been having terrible breathing problems for since last September. It started out only when laying down but by mid November it had evolved to 24/7 and I have not gotten a moment of clear breathing since. It’s hard to inhale and exhale - like the airways are constricted. I get a wheeze one exhale and very seldom inhale but the wheeze sounds like it’s coming from the upper airway. Not sure though. Often feels like I csnt get a deep satisfying oxygenated breath as well. I do want to stress this isn’t episodic but 24/7. I’m only 29 and a non smoker. I’ve been to the ER so many times.
I have had multiple CT scans and X-rays that cannot find the problem. Echo good no Pulmonary hypertension Bloodwork always normal. I’ve tried all the asthma meds, allergy meds , prednisone (which seemed to make me worse) and all of that. Vocal cords seemed fine when checked.
My conditions include things like POTS, MCAS , EDS , I had small PEs about five months into the breathing issues (had multiple clean CTs before they were there and they are gone now) Myesthenia gravis also ruled out.
Here is a list of things I’m considering -
1. Chronic carcinoid or Serotonin syndrome
So I had a very tiny carcinoid in my lung that was found during the bronchoscope . It was removed a couple months ago. Usually if it were carcinoid tumours when you get rid of them the symptoms resolve but mine did not. I had a urine 5-HIAA test that was negative. BUT I have a homozygous mutation on the MAOA rs6323 which is known to drastically lower the enzyme that breaks down serotonin. I have a crazy amount of fasciculations , muscle weakness , excess saliva production. I fell from my muscles being so weak at my pharmacy about a week before my breathing issues turned into a 24/7 thing. I’ve been trying cyproheptadine but I read somewhere on this site (a photo I’ll attatch at the bottom ) of needing upward of 100mg a day fro carxinoid and the most I have taken so far was 50 and I’m hesitant to go higher. I’m not on ssris.
2. Acetylcholine overload ?
So when this all happened I was taking Huperzine A and a quercetin compelx with Ingredients also used to increase acetylcholine. And sometimes even alpha gpc While on these drugs is when the breathing problems started. Very shortly after Huperzine actually maybe a matter of a couple weeks. Some of the symptoms above I mentioned for cholinergic crisis - but especially the muscle paralysis I would wake up with sometimes where it felt as though I’d had a stroke. I’d regain movement after several minutes. The fasciculations could also be explained with this. But I’ve been off that stuff almost a year now and it hasn’t subsided with breathing. Atrovent which is an anticholinergic kind of helps a little but not even close enough for me to function. Can I rule out acetylcholine causing bronchoconstriction if even atrovent doesn’t alleviate it? Inside of my mouth also swelled up on this stuff (buccal mucosa of my cheeks). I’ve only been taking the atrovent a few days so maybe I need more time.
I still get muscle fasciculations and perhaps that’s a sign that either serotonin or acetylcholine is still too high.
3. Cortisol problems
I was on Fludrocortisone as well when this began and ceasing that didn’t help. But man oh man did prednisone make Me worse. When I started out on 60mg I was awake for FOUR days straight with major adrenaline dumps and my body would not let me sleep. I truly thought I’d die at the end of it. It made whatever issue I was having worse. I’ve had clavicle area swelling akin to cushings for years and am wondering if that just put whatever cortisol issues I had into overdrive. Cortisol always normal in urine test, maybe slow COMT and MAOA gene mutations make the results not accurate again ? I know there’s an issue with hormones , especially since I have zero labido for years now and I’m so young
4. Relapsing Polychondritis.
This one really scares me and I think the possibilty at this point is very real. Tracheobroncheomalacia is something I’ve considered because my ears will turn red and burn and wake me up with pain. My nose cartlidge is damaged and droops down to either side I lay on. Switching sides and positions alters the severity of the breathing. I had a month long pain right down my sternum a week before the breathing issues started. I started the Huperzine around the time this pain subsided. I’ve had a bronchoscope that said it was fine but I’m still not convinced they did it properly. Rheum is unconvinced this is my problem. Also no chronic cough.
5. Airway remodelling or fibrosis not being picked up on scans ? I have some kind of autoimmune issue. I know I do. Tested positive for Sjogrens but they won’t diagnose it since my “eyes aren’t dry enough”. My CRP is always elevated at 4.6. Could I just have damaged my lungs with constant inflammation? If it is fibrosis or airway remodeling how do I reverse it if I can?
6. All this BS started right after an asymptomatic covid case. I hadn’t gotten sick in years either due to an autoimmune system in overdrive or just not working. But I never get acutely sick. Could covid have damaged phrenic nerve or something? Permanent airway damage even without bad lung infection?
7. I was also taking high does of magnesium at the time around 1000mg. It was pretty overkill. A calcium issues? Blood calcium is always fine though.
8. Iron issues?
My iron serum was 12 nmol, iron sat was low at 17% and ferritin was 144 nmol but I have raised CRP so maybe even that’s low. But I don’t know if low iron would cause wheezing.
9. An interesting one - Methemoglobinhemia? Someone taking my blood commented how brownish black it looked. It’s also very slow to come out and I’ve alreayd clotted. I’m taking vitamin c around 3 grams a day to see if it can reverse it but so far not much luck.
I’m terrified how long this issue has persisted without any help. Doctors don’t know what to do and aren’t a great help. I’m depressed I may have done this to myself with all that acetylcholine stuff. I don’t think I can handle this being permanent.
I’m just looking for out of the box ideas about this and will not assume it’s medical advice , but at the same time id love to hear your opinions on what I could do next.