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Hello everyone! This is my 1st post and I hope it will bring me a lot of insight into our condition. According to this one study I found on Dinet.org, Shortness of breath is a symptom of 27.6 % (Grubb, 2000). So it seems pretty common. This is my chief symptom and my scariest one, so I hope I get a lot of responses because I want to put together a list of who has this symptom, what type of POTS they have (i.e. Hyperadrenic, Neuropathic, etc..), what underlying cause they are aware of for POTS or the shortness of breathe (if they feel its separate) and what medications are working for this symptom. If you want skip my story straight to the bottom 3 questions :)

Here's my POTS breathing problems story. In 2005 I has pretty normal and healthy. I had decided that after years of inactivity (because of lower back injury in High School while playing tennis) I would start to get back in shape and I started biking long distance. After the spring, summer and fall of 2005 I could just about bike 20-30 miles. I was feeling great about myself.

In the winter of 2005 I got food poisoning from chicken and then a stomach flu in December of 2005. I lost a little weight but recovered. Then I decided to paint the basement where I had been renting an apartment so I could move some exercise equipment downstairs to make more room in other parts of the apartment. Big mistake, i painted myself and the room was not well ventilated and I used a thick special paint to coat the cinder blocks with.

2 weeks after the painting I decided that it was too cold to bike so I would try my new treadmill. I started running and after 5 minutes I noticed my pulse went up to 190, and I was way too overheated even with drinking water and then all of a sudden I couldn't breath. I instinctively ran outside took off my shirt to cool off in the freezing weather and it worked to help my breathing. Then about 2 weeks later it snowed and so I dressed very warm and was excited to start shoveling (it was pretty outside). I started shoveling very fast and again found that I was super overheated and could not breath, so I had to undress in the snow and again that saved me. At this point I knew something wasn't right but I ignored it again. one week later I went to bed late, a little dehydrated and I woke up 3 hours later with my pulse racing and I found it hard to breath. I took a shower and it didnt help. That was my 1st trip to the ER.

In the ER they gave me Albuterol nebulizer and tested my heart. My heart rate was 150-160 initially and for 24 hours would not drop below 120. Wow I was scared and worried. After 20 hours they gave me a Xanax I passed out from exhaustion and they said while I slept my heart rate was 80-90. But when I woke up it was back to 110+ and still not breathing great, but they sent me packing with some Xanax. I got home and then 4 hours later went to a different ER. Same thing another 24 hours they sent we walking having me thinking it was anxiety. But along with the heart racing and breathing, I was completely disabled and fatigued with chest weakness for 3 weeks+.

I went to a Cardiologist, he didnt find much besides the racing heart after all the typical cardio tests. I saw a shrink didnt do much, he actually fell asleep during one sessions haha. Then about 4 weeks after the attack my breathing was still suffering so I saw a Pulmonologist. He told me the tachycardia was because of Albuterol and that I should switch to Xopanex. He gave me a powdered inhaled steroid (Asmanex) and tried me on Singulair. I wasn't feeling any better so he told me to keep increasing my Asmanex until it works. I upped it from once a day to 4 times a day. It was a miracle, It started working and I recovered. I hadn't had a major attack until January of this year and if my breathing acted up I would just take Asmanex. I stopped Singulair after 6 months and i would carry around the Xopanex but never use it because I didnt want the tachycardia.

Fast forward to this year. I've had 6-7 attacks, mainly walking to the train from 10 blocks away. The first two helped me to lose my last job. The last two are what helped me diagnose myself with POTS. I ended up in the ER 5 weeks ago, my Asmanex wasn't helping or at least enough, so I finally used 2 puffs of the Xopanex (which irritated my trachea) and both were not helping. I was driving, and the nearest hospital was 20 minutes. I willed myself to get there and almost passed out a few times. When I got there, I was very tachy and my breathing was like breath hunger. My oxygen level was good. They treated me for asthma. But everyone thought I was crazy. I felt like an elephant was sitting on me I could barely move. After two days they basically kicked me out. I went home and my body shut down, it was scary. I researched and researched. I got an oximeter. After a week of doing breathing flow meter readings I stared to write down my pulse. I thought I had IST but then I realized the huge differences in pulse in positions. Yup like many of us I figured it out on my own, then I made a POTS specialist appointment and the Dr. confirmed it for me, but that same day I wore myself out at this new job 2 hours away and ended up in the ER 1 week ago.

Back to my Post subject. So I have tons of POTS symptoms, but now I'm on the hunt for something that will help me especially with breathing. My breathing is worsened by heat, walking, walking upstairs (I'm trapped on my 3rd floor walk up apartment), fatigue (especially at night), dehydration, stress, Allergies (for the first time I counldn't breath after touching a dog, I grew up with a dog and cat and never happened before, I'm a big animal lover), GERD and exercise.

Right now I'm taking 6 Asmanex inhales a day (doesn't help that much), I started Singulair again (1 week so far), And Prednisone from 5mg-30mg (that seems to help the most but gives me really bad acid reflux and makes my breathing worse. I'm taking Nexium and Zantec to help with that). I take B-12 1000mg for fatigue (helps a little). If I have really bad breathing I take Xopanex nebulizer (it helps a little not not completely, but gives me tremers , makes me lightheaded but only makes my heart beat go up 10-15, that's another reason I learned I had POTS, it doesnt make me as tachy for that long as the pulmonologist said).

I'm going to find a top Pulmonologist to look for COPD, ILD, Sarcodosis, and Lung Caner and an Allergist for mast Cell disease. Maybe check out my Liver which could affect breathing. If anyone has any of these can you let me know your story. I've read that some of these can cause POTS..

Can everyone list:

What type of POTS do you have (i.e. Hyperadrenic, Neuropathic, etc..)?

What underlying cause are you aware of for your POTS or the shortness of breathe?

What Medication are working for this symptom?

Thank you everyone!

Rich

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Hi Rich, I have POTS and mast cell activation disorder which is causing my POTS. I have a lot of breathing issues myself and very similar to yours. I find mine is aggravated by any physical activity, being hot, eating certain things, and being near things I'm allergic too. What helps me are mast cell meds which may be a nice experiment for you if you think you have a mast cell issue because mast cell meds are all over the counter and wouldn't hurt to take them (just check with your pharmact/doctor to clear you with any meds you're taking). So, an H1 blocker like benadryl, claritin, zyrtec, allegra plus an H2 blocker such as zantac (may help that GERD) or pepcid. I haven't med a person yet with mast cell issues that can tolerate pepcid.....I'm sure they exist but I notice on the mast cell forums most people take zantac. Anyway, those are easy things to try when you are out of breath to see if they help you (along with resting). My breathing issues have been so bad I couldn't walk from my bed to the bathroom, sing, or read a short book to my son. With my meds now, I can tolerate more walking (from my car into the grocery store)/activity, a little singing at church and a few books :). Now I have a clear CT scan, lung scans, pulmonary function tests, and asthma test (all normal) and my mast cell doc says all my breathing issues are mast cell related. I would pay really close attention when you get shortness of breath. Being hot & exercise can cause mast cell activity. Now I'm not a doctor but this is just my experience. Also, an allergist will very likely rule you out for mast cell problems because it's very under researched and unheard of in the medical community. I have had a million doctors say I don't have this before I got with the experts and they helped me get better. An expert like Dr. Grubb (knows a little about mast cell stuff) or one of the mast cell experts (Dr. Afrin, Dr. Akin, Dr. Castells, Dr. Schwartz) would have to be the ones to diagnose or rule out as they are the only ones that really know about this stuff. Shoot, I went to Mayo for a week and they couldn't even find it. Nevertheless, I take Singulair 10 mg twice a day and that helps a lot. Even still, if I do too much or I'm around animals, dust, mold, whatever,.....just forget it. I will be short of breath. www.tmsforacure.org is a great site to read the symptoms of mast cell. Just wanted to give the mast cell side for you and maybe the other members on here can provide their take. Take care Rich and I hope this helps :)

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Hi Rich-

I also have MCAD & suspect you may as well. Breathing is an issue for me too- at times. I take daily singulair and use Atrovent vis nebulizer when I need extra relief. Albuterol & Xopenex didn't help me at all.

You, like many, have already stumbled upon a pretty good MCAD med regimen out of necessity- with the exception of an H-1. You certainly are displaying allergy symptoms. Why not talk to your docs & consider adding a zyrtec in the AM and something stronger at night, like benadryl. If that helps, you want to begin working with a good allergist and consider a stronger (prescription) H-1 at night, like atarax or doxepin.

You already have the H-2 and singulair covered. Some end up also needing mast cell stabilizers, like gastrocrom and ketotifen.

If it is MCAD, you should get some pretty decent symptom relief once you tweak your meds.

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hiya, here's my answers- :)

What type of POTS do you have (i.e. Hyperadrenic, Neuropathic, etc..)?

Not sure what the name of my PoTS is but it's secondary to my Ehlers-Danlos Syndrome.

What underlying cause are you aware of for your POTS or the shortness of breathe?

i have asthma but not 'true' asthma as none of the preventer medications work. part of my breathing problems are due to all my tubes being rather floppy so they constrict to varying amounts when i breathe out. unlike in 'true' asthma, i struggle to breathe in but breathe out with relative ease, was told that i have to force open my tubes when i breathe in;

part of it is 'air hunger' cos my oxygen saturation likes to dip when my blood pressure drops & heart rate spikes. consultant said it was just cos my blood tends to pool in my legs, arms and abdomen rather badly and the more blood thats down there means there'll be less available to get sent to the lungs for the gas exchange to happen. and so my o2 saturation drops. if i stop what i'm doing and take action to return the blood to my heart and lungs (ie lay down, fidget arms and legs etc) then it pops back to normal almost immediately so i'm in no danger. but the lower my saturation the more air hungry i get, which is rather counterproductive cos it makes me breathe faster and less deep so i eventually start hyperventilating which just makes the whole situation worse. and for me, a small part is anxiety based (but totally subconscious). at a primitive level my body panicks when i cant breathe, or if i get too hot and cant cool down without help from the conscious part of me, or when blood pressure suddenly plummets etc and i expect this is to make me pay attention to it and take action to help rectify the situation.

i also get spasms in my lungs and get areas of intense pain, that i assume are just pleurisy pains.

What Medication are working for this symptom?

i take ventolin for the spasms and when i get very wheezy from the airway constriction and take buscopan for the spasms. i have to use both sparingly as they naturally lower blood pressure and encourage venodilation so they usually make my other PoTS symptoms worse and i'm at a high change of fainting. i find that if i have a very high salt and water intake then my pooling is not as bad and i loose a little of the wheeze and breathlessness.

i also do breathing exercises to open up my lungs and make sure i'm using all of my lung and not just the top. at the moment i find the easiest way to do this is to sing. it's very hard for a few mins and i get close to fainting but after a few mins my lungs open up and breathing is much easier.

i have an allergy to fungal spores and at this time of the year it's quite bad (and makes me wheezy) so i take an antihistamine. loratadimei tihink

ooh, just thought- my breathing gets very bad if i reflux up into my mouth with no proton pump inhibitor meds in my system, dr said its the relatively heavy tummy gases irritating the lining of my airways. but they are nowhere near as irritated when i take my lasoprazole!

fi

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Hi Godsgal, Thanks for your post! What test did they run to figure out that you had Mast Cell issues, I'm seeing a allergy/pulmonary office on Wednesday? How did all those other places esp Mayo miss it, so I know what to ask for? Any of those Mast Doctors in the Philly,NJ or NYC area? Even though Mast cells control histimines I'm beginning to think anti-histimine meds are not great for our POTS, because they affect our heat, dehydration, raise our tachycardia and can cause orthostatic hypotension (one symptom I dont have). Have you tried Cromolyn? Do you know of any allergy meds that don't have these side effects? Claritan for example completely dries me out.. Have you ever tried to up Singular to 20mg+/day? Have you ever had to use an Epi-pen, I'm worried because our tachycardia is so high it would go over 200 from that stuff?

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Hi Mack's Mom, Thanks for your post! Does Atrovent work well for you, it's usually used for COPD but I asked my dr in the hospital for it, haven't used it yet, but got the nebulizer form? I tried Clariton but it completely drys me out is Zyrtec or Allegra better? I get very over heated and dehydrated easily, but know I have allergies. I bought a mattress zipper cover, whirlpool air purifier, silk pillows and some dustmite stuff. They help a little, not that much.

I don't like drowsiness like from nyquil or Benadryl do the stronger H-1's make you drowsy? I wonder if the anti-histimine they use for nausea and dizziness Meclozine, would help...

Have you tried the Mast Cell Stabilizers, what are the side effects if so?

Thanks!! Rich

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Thought I would add in a little.

Not sure what type of POTS I have. I suspect that I have hyperPOTS, but that has yet to be tested.

I also have asthma, but it came on before I had POTS (at least I think it did). It hit me all of a sudden.

I woke up one day unable to yawn and it went on for 24hrs. Went to the doctor and they did chest xrays which showed that my lungs do not fully expand - ever. I have about 80% lung capacity. It was while I was in the dr's office that I had my first asthma attack. They sent me home with a ventolin inhaler, and another one that I don't remember the name of. For the next few months I was constantly in and out of the ER with asthma attacks that weren't responding to a rescue inhaler or a nebulizer (status asthmaticus). We're talking 10+ attacks per day without any known cause. It was extremely scary and at one point I was hospitalized for 3 days because they couldn't get my airways to remain open longer than a couple of hrs at a time. I couldn't leave my house because I had become so reactive that every little thing would cause my airways to close up. I got in with a good pulmonary group and they put my on a dulera inhaler - 2puffs 2x a day, along with my good ol' ventolin inhaler.

The Dulera was literally a life saver for me, although it is EXPENSIVE (roughly $200 with insurance).

Around this time is when I noticed my POTS symptoms - which I believe I have been experiencing moderately since childhood.

With every bad POTS flare came a bad asthma flare.

My cardiologist reluctantly put me on a cardio selective beta-blocker due to the severity of my OI (roughly 30 faints per day). The BB has been horrible for my asthma, and I personally recommend anyone with bad asthma to stay clear.

This is where I am today. The asthma was under pretty decent control until I began the BB - I'm back to using my rescue inhaler several times per day, which is likely going to cause me to build a dependence on it (sigh).

Also, I use a special pillow made for people with asthma.

I'm back to the docs next week and hopefully will get some answers. I'm curious about MCAD, as I believe it is a possibilty.

...I'm not sure that was of any help. Truthfully, I can't even remember what this was all about now. I should really be going to bed haha The joys of brain fog. :rolleyes:

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hi Rich, like you, shortness of breath is by far my worst symptom. In fact, if it wasn't for that I might be far more functional than I currently am.

I am still in the process of trying to work out if the mechanism behind my shortness of breath is related to my POTS or whether it is a completely different disease process. I get shortness of breath even when my HR and heart rate are completely normal. The only consistent triggers I can find for my SOB are: eating, exercise, heat/humidity, stress.

I do not have traditional asthma. I have been seen by immunologists and pulmonologists.

With the heat it feels like my lungs are collapsing and I have to really suck the air in. But other times it is quite the opposite where I find it hard exhale rather than inhale. Sometimes my SOB is so bad I can't talk, swallow or eat. Singing is definitely off the cards and has been that way for 2 years since I came down with POTS. The chest weakness you describe is something I can really relate to.

I tried ventolin (albuterol) and it only helped briefly for 20 minutes but gave me tachy.

I tried Sodium Cromoglycate and that made my airways close up.

The major thing that has helped is H1 and H2 blockers (claratyne and zantac). I never thought I was someone who could possibly have mast cell disease as I do not flush normally, I don't break out in hives or rashes, and my GI complaints are my least problematic. However, strangely enough the H1 and H2 blockers gave me significant relief to my air hunger. I also threw in Quercitin which is a natural mast cell stabiliser. I am seeing a haematologist in late December to hopefully get some answers.

I agree with Godsgal that there is little harm in trying H1 blockers. I did notice I am more tachy if I take therapeutic doses of Claratyne for treating Mast cell problems, but if I stick to baby doses several times a day I seem to be okay.

What makes you think liver could be involved in breathing issues?

To answer your question - I have no idea what 'type' of POTS I have. In my country most specialists I have encountered don't believe that categorising patients according to POTS subsets is useful in forming a treatment plan, therefore none have ever bothered to test me.

I have heard that other mechanisms that could potentially cause breathing problems could be related to acetylcholine. Some people have been helped by increasing their acetycholine levels. I am also trying to investigate this but having a very difficult time knowing what tests to have done. Unfortunately I can't get the acetycholine receptor antibody test done in my country and the blood sample has to be sent to the States or the UK ($4000 or something ridiculous like that and my insurance won't cover it).

Something else I recently discovered is that some people with EDS also have breathing problems, related to lax lung tissue vessels. I am not a flexible person and don't believe I have this problem but that is another path I'm thinking of going down to investigate.

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I think the breathlessness may occur in all forms of POTS and has to do with the over-responsive chemo receptors from venous pooling and/or postural hypocapnia.

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Rama- if it's postural hypocapnia, why do I get SOB and gasp for air when I do something as minor as try to roll over in bed on days when I'm in a flare? And why can't I talk while lying down without being so SOB I can't say more than 2 words at a time? I get the same thing when I'm upright of course, but it strikes me as odd that if it's only postural that it doesn't improve when I'm lying down.

Like Lotusflower, I don't have traditional asthma (although both my sisters do) and I sometimes have this symptom when my BP and HR are pretty normal. I also have the SOB and breath hunger triggered by eating or talking and there are many days where I can't say much at all because I get so light headed I feel like I'll faint because I'm so SOB. When I'm in one of these flares, I also find I can't feel my legs very well and walk with a wider base of support because I'm unsteady. If I try to force myself to move at my normal pace, I simply CAN'T.

I have intermittent exercise induced asthma but I think that's more related to seasonal allergies. I had the acetycholine receptor antibody test and it was negative.

It seems like all my symptoms seem to rotate between which are the worst at the moment. This SOB and breath hunger are certainly one of the more debilitating symptoms I have though when they flare up.

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Wow, everyone, this is exactly what I was looking for. We all are adding great insights. The more we share the more we can educate each other and conquer this!

I went to a new Pulmonologist today, he's smart (I always look up a docs background before I go, their med school, internship and fellowship and if they are on CC Top Doc list), but his specialty is sleep apnea (he was the only local doc I could get on such short notice) ( I was running out of prednisone). He told he doesn't think I have asthma, but ordered a pulmonary function study (third one ever). He says because I don't wheeze and don't really cough during my attacks it's probably not asthma, or that I may have minor asthma on top of whatever else I have. I threw at him a whole list of things I want to get tested for. Even though his office has an allergist, they don't do Mast Cell testing (so I guess that will have to wait until I see an immunologist). He gave me a script to get a High Resolution CT with contrast, he said that will cover almost everything. The contrast will check for clots, which he said are unlikely because in the hospital my Echo cardio was okay and my D-Dimer was okay. I'm not thrilled about the contrast injection that can make breathing worse... But the High resolution is good to test for Lung Fibrosis, a Lung mass, COPD, and most other Lung issues. He wouldn't give me a PET scan, which tests for small types of lung cancers... He said he feels that because of my fatigue, maybe my breathing is Neuro-Muscular disease, has anyone heard of that? But he also said to see a good Endocronologist to rule out everything adrenal, thyroid (which the basic test in the hospital came back okay). He said he might run me a on treadmill to see how my breathing acts up down the line.

I made him give me tons of new meds. He wouldn't give me Zyflow because he thinks its the same as Singulair (it's not exactly). He gave me tons of Predinose because I told him if it's any number of other things than asthma, they would prescribe me prednisone anyway. I asked him to try a new inhaled steriod so he gave me Pulmicort Flexhaler. Anyone ever use this and Asmanex, if so how do they compare? I asked him for an anti-anxiety med so he gave me Zoloft (but don't really want to use it, they all have bad side-effects that I think make our POTS worse) Any one ever use this and has it helped breathing? I also got him to give me a long acting beta antagonist, forget the name because the pharma had to order it for Friday. Any use one of those? He wanted to give me a combo but i told him i wanted to test them separately. Not sure how much of the Pulmicort i should use. I was using 6 inhales of the Asmanex 220mcg and Pulmicort is 180mcg, both powders. Any ideas?

I also bought Zyrtec, tried half a pill to test it out, so far it's okay, can't tell..

Once we get some more posts I'll start making updates and organizing like symptoms with like medications and % of success if you list them.

Cheers!

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Hey Alyssa, sounds like we have the same symptoms, I'd be curious to know all the times the your breathing is at it's worst. Like fatigue, night, being hot, aft eating, etc.... Have you tried plain ol prednisone pills? My doc just ordered me a long acting beta antagonist, never tried them. The problem with Albuterol (ventolin) and the long acting beta ant (Dulera, is a combo long-acting and inhaled steriod) is that they can mask regular breathing problems, so you should not be using them constantly. There are warnings for both Ventolin and Durela that say there is a high mortality (death rate) with people who use them continually. So I only use my Xopanex (a ventolin, with less tachy affects) unless I'm thinking about the ER. You should try a separate inhaled steroid and try upping the dose, there are very little side effects because they stay in the lungs and most steriods have bad side effects in the blood. For example high dose prednisone cause bone lose, water retention, glaucoma, weight gains, etc... but inhaled doesn't. Plus you should really see which is helping more the inhaled steriod or the long-acting beta. The long acting beta is really the same as the Ventolin (which is a short-acting beta). hope that helps and let me know what happens! best, Rich

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Hi Lotusflower, me and you have to stay in contact! Sounds like we have exactly the same symptoms. I'll add you as a friend! I get the same type of SOB problems, I have a theory that our POTS dehydrates our lung. Most POTS ppl also have colder extremities but really a really warm body. I think our lungs are loosing hydration somehow. I also get with when eating and allergies but I think that is slightly different. So maybe we have two types of asthma or more and Mast cell to boot. I take Nexium, sometimes Zantac at night before diner. I don't like claritin, it drys me out so I'm testing half doses of Zyrtec. Someone emailed me about everything the liver does to help us and one thing it does is act as a filter for airborne toxins. I think I got my POTS and Asthma from inhaling toxic paint chemicals so maybe my liver got damaged. I looked up acetylcholine and it looks rare. 1st I'm ruling out some basic lung disease and fibrosis, neuro-musculor issuses and adrenal/hormonal/diabetes type of things, then I'll go after the rare things if it comes to that. But one things for sure that if one of figures this out then the other one will benefit :) I don't think we have EDS either, I'm not flexible.. I want to maybe see Dr. Grubb down the line, maybe he can have an answer..

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I think the breathlessness may occur in all forms of POTS and has to do with the over-responsive chemo receptors from venous pooling and/or postural hypocapnia.

Ramakentesh, what makes you think this, it has been observed, but was it observed in you? Can you give us more background?

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Rama- if it's postural hypocapnia, why do I get SOB and gasp for air when I do something as minor as try to roll over in bed on days when I'm in a flare? And why can't I talk while lying down without being so SOB I can't say more than 2 words at a time? I get the same thing when I'm upright of course, but it strikes me as odd that if it's only postural that it doesn't improve when I'm lying down.

Like Lotusflower, I don't have traditional asthma (although both my sisters do) and I sometimes have this symptom when my BP and HR are pretty normal. I also have the SOB and breath hunger triggered by eating or talking and there are many days where I can't say much at all because I get so light headed I feel like I'll faint because I'm so SOB. When I'm in one of these flares, I also find I can't feel my legs very well and walk with a wider base of support because I'm unsteady. If I try to force myself to move at my normal pace, I simply CAN'T.

I have intermittent exercise induced asthma but I think that's more related to seasonal allergies. I had the acetycholine receptor antibody test and it was negative.

It seems like all my symptoms seem to rotate between which are the worst at the moment. This SOB and breath hunger are certainly one of the more debilitating symptoms I have though when they flare up.

Hey Chaos, thanks for reporting in, looks like you are in the same boat. What have you tried that has helped and what hasn't helped? What meds if any that work for it? Do you get overheated, dehydrated, fatigued, etc..?

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I have these breathing issues too. One of my first things was my inability to sing - and that is one of my favorite things to do. It kept getting worse as my POTS symptoms got worse. I find that a puff on Albuterol does help - what it does is dilates the blood vessels and helps to carry oxygen. It also has a connection to NO. So, for us with HyperPOTS - it could possibly help allot of things. But, if you use too much it will cause your tachy to be worse. Fine line between a help and a hinderance. I don't have asthma either - no signs of it. But, sometimes I can not catch my breath. So docs gave me the inhaler since it does help.

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The only medication that has really relieved my shortness of breath has been nitroglycerin. I was also on Imdur (a 12-hour nitro) for awhile, and also got the same relief from the air hunger and it cleared up my brain fog! However, it made standing up more difficult. :rolleyes:

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Rich - my asthma doesn't really have a time that it's at it's worst. It is triggered by cold food, hot food, allergies, exercise, coughing, strong scents, humidity, singing, etc. Basically, my airways are just over reactive.

They tried a long list of different inhalers and this is so far the only combo that has worked. I believe it is the fact that Dulera is a combination that makes it work as it seems that each on it's own doesn't do much.

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I'm starting to think the SOB issues are a combo of Pooling (after standing or eating), fibrosis of the lungs (getting a high resolution CT scan to test for this, there are many many causes, chemical inhalation being one cause), slight asthma (which may be Mast Cell related and/or allergy related some other syndrome related. But I also want to rule out Liver issues, hormonal imbalances and neurological/muscle issues...

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The only medication that has really relieved my shortness of breath has been nitroglycerin. I was also on Imdur (a 12-hour nitro) for awhile, and also got the same relief from the air hunger and it cleared up my brain fog! However, it made standing up more difficult. :rolleyes:

Yes, NO is nitric oxide - which would also be nitroglycerin. Albuterol helps to up NO.

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The cause of your SOB could be muscular in origin. Since acetylcholine plays such an important role in POTS and seem to be in the low end for the most part. This could be preventing your respiratory muscles from contracting efficiently enough to fully expand your lungs. Is that what it feel like ? Like you can't expand your lungs fully. I have this same problem and after a thorough evalution by the pneumologist, he suggested the problem could be muscular in origin. He found nothing wrong with my lungs and could be seen or measured. Does using mestinon help with sob ?

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Beggiatoa, one of the members here mentioned she had significant help with SOB by taking Mestinon, causing her to think the mechanism behing her POTS is related to acetycholine. Nicotine can also apparently help SOB for similar reasons. I haven't yet been game enough to try patches, but will if I become desperate enough.

Interesting what you say about SOB being muscular in origin. My Osteopath has noticed than when I inhale the diaphram muscles which contract to expand the lungs to cause inhalation are quite weak compared to her other 'normal' patients, and she postulates that that is why I don't feel like I can ever take a really deep breath (and also probably why I can't sing properly anymore). My respiratory guy also couldn't find anything wrong with me after doing lung function tests, etc.

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Beggiatoa and Lotusflower...interesting observations. I've felt all along that it was more of an "energy" issue than a lung problem with my SOB, breath hunger and intermittent hyperventilation. A problem at the ATP/ADP level would certainly fit that scenario.

Does anyone else notice that they lose their voice/ become hoarse/have laryngitis type symptoms when they have the breathing problems?

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