Trouble Breathing

[kclynn]

I know this is discussed a lot. I know it mostly that the ANS is affecting this, though from what I have read of studies it is poorly understood just how it is doing that. But my son has had so much trouble with this lately, and I am sure once it starts that he then gets anxious about it and it all gets worse. Dr. says to increase his Clonidine, which he has been taking just a small amt of and doing good on it. But I can hear him coughing as as well as he is struggling (he isn't turning blue or having significant oxygen deprivation that is visible) and what I am wondering is if he could be having asthma issues? Anyone else?

[puppylove]

I have been feeling like I can't catch my breath on and off for the past three days. I dont cough or anything so maybe it's not the same thing...

[Katybug]

I have been tested for asthma several times and am negative on the breathing test for it. My shortness of breathe definitely is related to dysautonomia.

I did have a lot of trouble when the doc tried me on Topamax for my migraines. I got to the point that I couldn't say more than two full sentences without starting to cough/choke. Has he had any changes in meds that may be causing the change in this symptom?

[Godsgal]

Could singulair be of any help? I have had lots of breathing issues related to my MCAD/pots stuff. I take singulair 10 mg twice a day and that helps a lot! Plus my MCAD regime.

[yogini]

Some shortness of breath is normal for POTS, but beyond that i am not sure it is a ANS problem. A lot of people here have breathing problems because they have other conditions like allergies and asthma. If this seems like more than a little SOB I would press the dr or get a 2nd opinion.

[abnel]

One of my POTS specialists insists it's "just POTS" and there is nothing anyone can do for it.

The other POTS specialist I have seen thinks that more than just a little SOB is definitely something that should be investigated further as in his opinion the vast majority of POTS patients do not experience the severe SOB that I do periodically.

I've had to take matters into my own hands and request referrals to others after my POTS and respiratory physicians have added little value.

[kclynn]

He has an appt with his family Dr. on Thursday. I am really beginning to think it is related to reflux/GI issues. He also burbs, had had nausea, GI trouble pretty badly for the last year when his POTS is symptomatic. I had been thinking of asking for a GI referral and none of the POTS Drs we have seen really want to address it. We don't live close to them so I understand. They say see a GI Dr. at home. He has lost 35 lbs in the last year and a half, some of it was intentional in the beginning. He was a little heavy and now is perfect for his height but we are concerned that he has lost much of this weight through not being able to eat. 16 yr old boys usually have big appetites. Anyway I have read how the reflux can be causing symptoms of coughing, his is worse at night, when he lays down, then he has trouble breathing and I guess the throat can close some because of trying to protect the lungs from the acid. His Dr. over the years has prescribed zantac every once in a while, so it isn't a new thing. Thanks for the replys.

[Katybug]

Interesting you brought up the reflux. I didn't think of it but my Mom did develop asthma from having severe reflux from a severe hiatal hernia. It was for exactly the reason you state according to the doc...stomach acid was coming up far enough at night that she was asparating some of it in her sleep and it was irritating her lungs enough to cause asthma. Now that the GI issues have been addressed her asthma is much better. The doc said it would take her up to 1 1/2 yrs for it to really resolve as lung tissue can take a while to heal.

[rubytuesday]

I had been feeling (for a few years now) that I just wasn't getting in good air (for lack of better way to describe it. I have intrinsic and extrinsic asthma and COPD. It isn't like my asthma events so I thought perhaps due to COPD? I was at immunologist/pulmonologist/allergist at Cancer Center Mon. and we were discussing my sinus surgeries/repeated infections and she did pulmonary loop function test that showed I have Vocal Cord Dysfunction. It's usually missed by docs and ER docs since it mimics and triggers may be same as asthma in so many ways (I can tell difference and I've been living with this since late spring 2007).

There is a nerve under the vocal cords that is regulated by the autonomic nervous system--hum? And things like my frequent dry cough or post nasal drip or GERD can also cause irritation. EDS can play a role (making ligaments/muscles more lax) which I have. I'd noticed hoarseness off and on and the lack of the ability to control the force/projection of my voice when I speak, lector at church or sing. I thought that might have been due to multiple sinus surgeries. Now I am being sent to otolaryngologist who is one in handful in US who does phonetic surgery (not that I need that). I believe the standard is some speech therapy to teach diaphragmatic breathing and muscle relaxation.

I also learned that the larynx is the most sensative part of the entire respiratory system and when anything irritates it, it sets it into spasms. These spasms cause your airway to close as you try to breathe in (in some cases) or breathe out (in other cases). The specialist at University Cancer Center told me that typical 'Pulmonary Function Studies' do not include this loop study that catches this. I believe mine to be chronic at this point as some of these factors are not controllable by meds/modes/diet tried with me for the drip and gerd. And I didn't have respiratory infection, nor 'cold air' in doctor's office (like outdoor cold air that is an irritant). I had filled out neurology questionnaire and called it to neuro's attention the fact that I sometimes have difficulty swallowing and feel like I am going to choke at night in bed. I'd mentioned it to PCP (IM) too but nothing was ever explored--just dismissed.

Just planting food for thought as you watch and learn your body with this.

[JWPotsMom]

My son has acid reflux and the feeling of something stuck in his throat brought on by POTS. The Ped GI did an upper GI, and declared my son to be perfectly healthy aside from minor reflux damage (he prescribed PPIs and hypnotherapy). No PPI medication helps--I'm assuming because it's not really GERD, it's POTS. He will reflux horribly, but only with other POTS symptoms.

He also frequently says it feels like an asthma attack while POTSy--he's been checked out and there's no asthma, it's POTS again.

These things need to be checked out just in case there's relief to be had, but I can verify from our experience that it can be 'just' POTS.

[rubytuesday]

My son has acid reflux and the feeling of something stuck in his throat brought on by POTS. The Ped GI did an upper GI, and declared my son to be perfectly healthy aside from minor reflux damage (he prescribed PPIs and hypnotherapy). No PPI medication helps--I'm assuming because it's not really GERD, it's POTS. He will reflux horribly, but only with other POTS symptoms.

He also frequently says it feels like an asthma attack while POTSy--he's been checked out and there's no asthma, it's POTS again.

These things need to be checked out just in case there's relief to be had, but I can verify from our experience that it can be 'just' POTS.

When I was researching this new diagnosis of Vocal Cord Dysfunction (symptoms and triggers mimic asthma), I learned that one trigger is GERD (which I have and PPI is no help), but one could also be triggered by larygeal regurg. I'd have him checked by ENT/Otolaryngologist.

[JWPotsMom]

When I was researching this new diagnosis of Vocal Cord Dysfunction (symptoms and triggers mimic asthma), I learned that one trigger is GERD (which I have and PPI is no help), but one could also be triggered by larygeal regurg. I'd have him checked by ENT/Otolaryngologist.

Thank you!

[kclynn]

JWPotsMom and RubyTuesday,

Yes I would agree about the ENT or another GI because there maybe more they can do. What I would be concerned about that GERD, regardless of the trigger, is causing damage over time. This is my concern. My husband was just arguing with me this point this afternoon that it is "just POTS" but I think it needs to be looked at. Hubby doesn't want to drag him to yet another Dr. which is very distressing at this point to my son. I understand that but I worry about 1. the possible damage and 2. overlooking a solution that could make him feel so much better. Sometimes I don't know what to do. With the IBS stuff along with this he is pretty miserable...

[JWPotsMom]

We could start a whole new thread on children traumatized by POTS, doctors, medication reactions, tests, and ERs! But that would just be miserable, so let's not. : ) It's a tough choice whether or not to continue the search for answers, but we parents do our best for our babies and that's all we can do. I was compelled to continue through dozens of doctors and ERs through three states--and ended up with big bills, a traumatized sick kid, and not much else.

Yes, on-going reflux can cause permanent damage to the esophagus as well as lead to esophageal cancer.

In DS's case, nothing helped the reflux except the POTS flare quitting. There is nothing we can do about it.

[kclynn]

A few days ago I started giving him generic Pepci AC and the nausea hasn't changed, really, but I am not seeing the coughing and throat constricting, trouble breathing at night. Interesting....coincidence? It has only been a few days, though...

[Katybug]

kcmom and JWPotsMom,

My reflux started when I was 5 y.o. and after many docs, one finally believed my mom that I threw up every morning upon opening my eyes and often had uncontrolled nausea through the day. When he scoped my esophagus, it had been ulcerated from the constant reflux. Since that was years ago, the drugs were totally different. He put me on Urecholine (http://www.drugs.com/cons/urecholine.html) twice daily and I also had to take a dose of liquid Gavascon (OTC antacid) twice daily to coat/protect my esophagus. I hated taking the Gavascon but it really did help as did the Urecholine. After 9 years, I was weaned off the Urecholine. I didn't have GI issues after that until college.

[kclynn]

Here is what happened. Dr. is concerned that he doesn't eat from 9 at night to 3 the next day often. When he does it is maybe a small protien shake, small snack, sometimes a burrito, but not early enough calories for a 16 yr old boy. She thinks maybe he gets nauseous from his insulin not working right, nothing there for the insulin to use, so body makes more insulin thinking something isn't working right, and so on and so forth. She said that is one posibility, low blood sugar along with that (his was 75 today at 11 AM and he had not had anything to eat). So possibly his bad brain fog is at least part of that?) She totally gets he has pots but also doesn't want to "miss something" just thinking it is part of pots. I love her She is also conservative so a trial of Nexium (which my insurance won't pay for so we are trying Prevacid OTC per the pharmacist till we get a preapproval straightened out possibly) Insists he try to eat a little every morning, even a chocolate milk, applesauce... something like that, not so many protien shakes 1st thing. I think it is a good start. His nausea has been there since he got the POTS last year, though and I am not sure if he doesn't eat because he is afraid of being nauseous or if he truly has no appetite. Usually when he finally does eat, more than half the time he has at least some nausea. Good start, after a couple of weeks she will think about more intensive tests for him. She told me she has read all the papers from Dr. Grubb and Beverly Karabin That made me feel good.