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Dysautonomia Breathing Related Issues And Treatments

Dysautonomia, breathing related problems and treatments  

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Aspirin may not work for you then. But, I did a search for alternative things to lower PGD2 and posted it on another thread today - under "Follow-up with Dr. Afrin". I have about decided that the aspirin isn't the best for me either - but, some of these other things are helping - done something different for two days now and feeling better.

Issie

The A and I in NSAIDS, which is what asprin is, stands for ant-inflammatory. Prednisone is also an steroidal anti-inflammatory. I've heard of them using prednisone in bad allergy or anaphylaxis cases but not asprin, still I read all the mcas material and only saw anti-histimines, singular and epi mentioned..

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I had an alternative physician years ago when we were trying to figure out what was wrong. He believed in adrenal fatigue and with a saliva test to an alternative lab it was found that my cortisol levels were low. I used cortisol for several months two different times. With any surgeries I have - I also have cortisol administered IV. It really keeps me from crashing. I do believe in low, dysfunctional adrenal function and think more doctors should look into this and realize that even if we may not show a complete adrenal function failure there are varying degrees of dysfunction and support sometimes makes us feel a whole lot better.

Rich, the research I did on PGD2 is listed in a post very near the end of the post I mentioned. This is something I found with a whole days worth of research. So, you won't find it listed on any of the sites - because I read tons of forums and also papers on PGD2 and ways to down regulate it. I was finding that the H2's and aspirin were not agreeing with me. Still doing fine on the Claritin - except for it making me really sleepy. But, needing to find alternative ways to block the H2's and also PGD2. That's what I found - that I listed on that thread. Just another way to possibly work with the issues - but from a different angle.

Issie

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Low cortisol is tested by endochronologist and they treat it. I don't know if I personally would trust an alternative docs testing but if it help great...

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I recently found a great endo who first and foremost believes my story and symptoms....and has just begun to run a gamut of tests. I'm starting with some bloodwork that hadn't previously been done...autoimmune stuff and I haven't ever been ruled out for Lymes. Also having a pituitary MRI because I am producing breast milk (sorry for that little tid bit but it's just one of the weird things my body started doing this summer). Some may know from my previous posts that I've been a decent responder to hydrocortisone. I'm down to 2.5mg/day....slowly weaning. I have had a little surge of symptoms following my menstrual cycle (not uncommon) but I love the steroid for helping reduce them and I'm just not willing to bandaid this with the wrong drug anymore. However, once off the HC I can start to get retested for adrenal stuff....she believes my symptoms are actually pituitary not communicating with adrenals....hopefully my adrenals still like me once off the HC and I can find the right meds for me. Today symptoms are right ear pain, right facial pain, feel funky with noise, smells and light, lightheadedness, low am BP, nighttime tachy (feels like adrenaline surges once I lay down). Right hand veins popped out and difficulty breathing. MRI is Tues, bloodwork should be late next week once totally off HC. Will post if new endo offers anything new.

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Ive stopped telling doctors i have breathing problems. Non POTS doctors think youre talking about anxiety every time.

I describe it as "feeling like im having to work to hard to breathe"

I had trouble choosing one category as the trigger----big meal, flares, sleep apnea, MSG/cafffeine,/chemicals, being overly tired, blood pooling, bad drug combinations, a little too much benzo, allergies,heat, excercise intolerance, lifting heavy objects ..........all cause problems. Im very careful.

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Guest mattgreen

Agree with Spinner. I mention to my Doctor I get shortness of breath.

"It's normal, with your symptoms to suffer anxiety."

Um, who mentioned anxiety? I even told him it was only upon activity. But nope, still anxiety!

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I had trouble choosing one category as the trigger----big meal, flares, sleep apnea, MSG/cafffeine,/chemicals, being overly tired, blood pooling, bad drug combinations, a little too much benzo, allergies,heat, excercise intolerance, lifting heavy objects ..........all cause problems. Im very careful.

Spinner, you can choose more than one answer..

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Could you add "caffeine" to the last question, and "none of the above" as well as "other" generally?

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Could you add "caffeine" to the last question, and "none of the above" as well as "other" generally?

Unfortunately I reached the limit of options or I would add tons more..

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I find my symptoms worse at night, before or I fall asleep and sometimes during sleep (that wake me up). I have had the occasional issue while eating, and it doesn't seem to be any sort of food in particular. I get breathless singing in the car, and I've also noticed that blowing my nose (more than once in a row) can trigger a reaction, which I find strange. (I recently had a cold and this seemed to make the breathing stuff ten times worse.) Oddly enough, I find that once I start to panic and I get an adrenaline rush from that, it actually seems to help my lungs feel like the oxygen is reaching them again. I also find when it happens to me in the car, that I have to roll down the window, take off my sweater, and get cold air on me and it helps. If I'm in the shower I have to stick my head out to feel like I can breathe again. I think caffeine and alcohol also have a tendency to make my symptoms worse, which ***** since I love both coffee and wine! :(

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Hi Rich. It's been a while since I've been on the forum. Hope this finds you in a good moment.

Went to the Mastocytosis conference in Greenville recently and was surprised to find a large majority of patients, well over 50%, had POTS, NCS or OH. I was surprised because I have heard all along that real MCA in POTS is very rare. In fact, the young lady who did that interview w Dr. Grubb about Hyperadrenergic POTS and MCA was there. By the end of the conference I had patients asking me more about Dysautonomia because they didn't know that NCS was a form of Dysautonomia. What is interesting and most notable is that these were not just MCAS patients, these were patients with Indolent Systemic Mastocytosis, Smoldering SM AND Cutaneous Mastocytosis. No one is talking about this, to my knowledge. I don't know of any study really digging into this. The only one that comes close is the one done a while back at Vanderbilt by Shibao, et al. (where they just used a Methylhistamine test to isolate MCA- which at that time may have been all that they had.)

So I come home from the conference with this obvious awareness gnawing at me. There has got to be a connection between Mast Cell issues and dysfunction of the ANS. Had you been there, you would have seen it as plain as day just in looking at this wide cohort of patients with various either proliferative or overactive mast cell abnormalities. And, so I'm discussing this with my Autonomic doc and he is thinking there is probably some ANS function that causes some mast cell abnormality. So I text one of my new physician friends, Dr. Theo Theoharides, and I ask him if there is any way the ANS could cause either mast cell degranulation and/or exocytosis. He texts back, "Aceytecholine can.". So I start digging and I find this paper, which makes me think of you. Of course because I know how much you love breathing and how much you enjoy reading nail biting edge of your seat medical research. :)

Would love your thoughts. Feel free to PM me back. I posted this on your big breathing poll thread because I thought there might be others with breathing issues or Mast Cell knowledge that might want to weigh in.

http://www.atsjournals.org/doi/full/10.1164/ajrccm.156.2.96-12079

Edited by Kellysavedbygrace

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Kelly-unfortunately the article says more acetylcholine the less overreaction from mast cells, but the major acetycholine activators like Evoxac have a warning on them for actually making breathing problems worse. More Ace=more mucus. More mucus usually means more histamines released or think blobs of mucus like in cystic fibrosis. There is a COPD inhaled med called Atrovent which is a pure acetycholine inhibior that they use for breathing problems. That med of course has the warning or causing dryness.

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I have had breathing problems since around 2006 and they have gradually got worse. I found out last week that I have partial collapse in my lungs...so that makes sense. Looks like I won't get any chat with the specialist as he isn't issuing a follow-up appointment which I think is wrong as an explanation would be handy as to the cause and what I should do about it.

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