Help! Is this asthma? I'm frustrated..

[mom61508]

Hi all,

I'm a 30 year old momma with know child hood asthma ever. However for the past 5 weeks I've been having strange symptoms that no doc can figure out. I was in Japan when it all started. I had intense presure headsches for 2 weeks then those went away for the most part. I suddenly developed constant shortness breath, heart palpatations, weakness and fatigue.Going up stairs would cause my heart to race and it was hard to breath. Night time seems to be the worse where it's almost like i forget to breath and it wakes me up or stops me from sleeping. I also get adrenaline surges from this. It's awful! 

I've been to 3 cardiologists who have done every test besides actually looking inside my arteries. I've had extensive blood work that all came back normal besides thyroid. TSH was a 3.78 I feel better around a 2. I also have Hashimotos. My cki was slightly elevated at 382 but all other heart enzymes were negative. I had a chest CT with dye that was normal as well. Now I just saw a pulmologist who did preform a breathing test who said it looked normal but when I used the inhaler I did show slight improvement. She said it seemed as if my short airways are inflamed. Gave me a low dose inhlaer and sent me on my way. Well last night I had a really bad time breathing. It got really bad I almost called 911. I used my inhaler and it did help but not that much. So my the doc prescribed a week of oral steriods and a different inhaler to use. I hate taking anything! I'm scared and concerned this will never go away. 

I'm just not sure this is asthma. Cold this be allergies?????? I thought coming back from Japan to Arizona would help but I'm not getting any better and I've been home for 2 weeks now. Any ideas or help?

 

[mumkimum]

OP - I'm going to ask dh later (as he's had asthma all his life).  But my ideas are - has anyone had you use a peak flow meter?  DH has one to monitor his asthma, and I wonder whether it would get used to evaluate whether or not you have asthma (I suspect it would?).

Dh also has sleep apnea - and if you're getting symptoms when you're sleeping like you describe, I'd be curious whether that's actually the issue.  (He had extra fatigue, weakness, and waking up while sleeping for some period of time and a breathing machine helped immensely).

[mom61508]

Thanks for the reply! No I've never heard of the peak flow meter. I'll have to ask my doc about that. The pulmologist didn't think it sounded like sleep apnea as I have the same symptoms all day too. I hoping some other mamas have more ideas :(

 

[sbgrace]

I'm sorry you aren't getting answers. I'd be scared and frustrated too. This doesn't sound like "just" asthma to my experience but I hope it is.

Some thoughts:
1. You are describing symptoms at night that sound like sleep apnea. Most people with sleep apnea also have disordered day breathing so having day symptoms does not mean you don't have apnea. I disagree with your doctor there (I have day and night breathing issues and wear a mouth device for it even during the day; this is information on the day issues from my doctor http://www.centerforsoundsleep.com/blog/oral-systemic-balance/). However, I wouldn't expect that stuff to suddenly hit a person. Still, I would want a sleep study in your place because your symptoms are consistent.

2. Cardiology sounds like they have been thorough. I can certainly see why they were suspecting cardiac issues as your symptoms are very consistent. I have read a lot lately about tests typically done though not being effective at catching women's heart issues. I can't find the article i read recently but I did find these. http://www.npr.org/templates/story/story.php?storyId=5552425 http://abcnews.go.com/Health/HeartDisease/standard-heart-attack-testing-work-women/story?id=14608193#.T-Tf3oG0bTp That one talks about an intravascular ultrasound for example for women. Beyond that they did image your heart I assume, right (heart echo?)

3. Pulmonolgy. I hope it really is just asthma maybe a viral induced flare. Did pulmonolgy image your lungs? I mean looking for things like sarcoidosis. http://my.clevelandclinic.org/disorders/sarcoidosis/hic_overview_of_sarcoidosis.aspx. I'm guessing they looked for pulmonary hypertension? Other things would be rare at your age but this lady (young) was in the news recently with http://en.wikipedia.org/wiki/Idiopathic_pulmonary_fibrosis this for example which usually hits old people. I'm sure it's not that but I'm hoping they did image to look for any lung damage.

4. I wonder if ENT might be a place to try if nothing else pans out. I was thinking things like http://en.wikipedia.org/wiki/Laryngospasm this which can be related to reflux. Reflux alone could be responsible.

Anxiety is another thought. This experience would be enough to make anyone anxious.

I so hope you get answers and this resolves and very, very soon.

[mom61508]

Originally Posted by sbgrace 

I'm sorry you aren't getting answers. I'd be scared and frustrated too. This doesn't sound like "just" asthma to my experience but I hope it is. 
Some thoughts:
1. You are describing symptoms at night that sound like sleep apnea. Most people with sleep apnea also have disordered day breathing so having day symptoms does not mean you don't have apnea. I disagree with your doctor there (I have day and night breathing issues and wear a mouth device for it even during the day; this is information on the day issues from my doctor http://www.centerforsoundsleep.com/blog/oral-systemic-balance/). However, I wouldn't expect that stuff to suddenly hit a person. Still, I would want a sleep study in your place because your symptoms are consistent. Yes it was very sudden. Maybe this is something I should look into more. 

2. Cardiology sounds like they have been thorough. I can certainly see why they were suspecting cardiac issues as your symptoms are very consistent. I have read a lot lately about tests typically done though not being effective at catching women's heart issues. I can't find the article i read recently but I did find these. http://www.npr.org/templates/story/story.php?storyId=5552425 http://abcnews.go.com/Health/HeartDisease/standard-heart-attack-testing-work-women/story?id=14608193#.T-Tf3oG0bTp That one talks about an intravascular ultrasound for example for women. Beyond that they did image your heart I assume, right (heart echo?)  I'm still concerned it's my heart. I've had 4 EKGs, 3 echograms,stress test which they said my heart looked good but I had a rough time breathing and I wore a holter monitor which showed some tachycardia and irregular beat but nothing that seemed concering they said. My BP is always good and cholesterol is good too.My CKI was elevated at 382 but all other heart enzymes were negative.

3. Pulmonolgy. I hope it really is just asthma maybe a viral induced flare. Did pulmonolgy image your lungs? I mean looking for things like sarcoidosis. http://my.clevelandclinic.org/disorders/sarcoidosis/hic_overview_of_sarcoidosis.aspx. I'm guessing they looked for pulmonary hypertension? Other things would be rare at your age but this lady (young) was in the news recently with http://en.wikipedia.org/wiki/Idiopathic_pulmonary_fibrosis this for example which usually hits old people. I'm sure it's not that but I'm hoping they did image to look for any lung damage. I've had a chest x-ray,CT scan with Dye is that what you mean image of the lungs? It was normal. would fibrosis be seen on CT? I had a point a couple nights ago where I felt so short o fbreath I almost called 911. I took a puff of the inhaler and it did help but not to the point where I could breath great so my pulmologist prescribed me a week of predisone that I've been hesitant to take. I'm scared it will mess with my heart or something. This is keeping me up all night. I'm scared to be honest. 
4. I wonder if ENT might be a place to try if nothing else pans out. I was thinking things like http://en.wikipedia.org/wiki/Laryngospasm this which can be related to reflux. Reflux alone could be responsible.
Anxiety is another thought. This experience would be enough to make anyone anxious.
I so hope you get answers and this resolves and very, very soon. Seeing an ENT sounds like a good idea.  I feel a lot of pressure and palpatations in my neck and throat. My symptoms are just so odd. I also get random head pressure but I've had MRI and CT of the head and all was normal there too. Could this be realted to Hashimotos at all???

I appreciate your reply. It's very helpful. :)

 

[mumkimum]

I spoke with dh a bit, and generally he felt like your description sounded more like his sleep apnea than asthma (though people's experience of asthma can vary quite a bit - he says).  From what he & I recall, dh was having bad headaches just before getting diagnosed with his sleep apnea, and your description of getting out of breath when going up stairs, as well as general all-day fatigue & weakness was very much what he experienced.  He'd fall asleep easily, any time of day (possibly your anxiety or general daily habits prevent this?).

IF it is asthma-related, the prednisone is what dh ends up doing for a week or two and it helps immensely (like if he's had a bad or long-lasting cold and his lungs have been weakened).  It may also help your inhaler usage be more effective if it currently isn't.  If it doesn't help, may help rule out asthma.  I do understand being hesitant to use it without being sure asthma is the issue or not.    

He did say that a peak flow meter is what they'd use to help diagnose asthma - they'd have an electronic kind of sorts if you'd end up being evaluated in office.  IF that is difficult to get to, and you happened to know someone with asthma, there's a simple at-home plastic kind (that my dh has - not sure if you can just go pick these up anywhere, but you might) and you could probably use easily to self-evaluate and bring your results in to someone, just for the sake of having something to do with figuring out what's going on.  It's simply something that you breathe into and it'll measure how strong your breath is - so nothing that's going to affect you or you'd need supervision for, just a general explanation of how to breathe into it.  

  Hope you're able to figure something out. 

[mom61508]

Thank you so much! I hope your DH is better now! 

 

[Peggy O'Mara]

I sure hope you get this figured out. It must be so scary for you not to be able to breathe and you must be overwhelmed by how quickly this all happened.

I'm amazed at your detailed response, SBGrace. I was also thinking sleep apnea and reflux too.

Could you have picked up a virus in Japan? Maybe 2 weeks is not enough time to feel back to norma. Do you think that your health care people are not doing enough or is it just the frustration of the situation? My dad had good results going to Mayo Clinic for intractable things. There's one in Arizona.

Hope you get some relief soon.

[heatherdeg]

Originally Posted by Peggy O'Mara 

Could you have picked up a virus in Japan? 

This is what I was thinking.  That or your body needs to detox (which would also throw your thyroid out of whack).  Absolutely by all means--the things suggested here for apnea, pulmonology and cardio should be exhausted but I would see if I could simultaneously find a good naturopath (or even an infectious disease Dr.) that could run parasite and environmental toxin levels to see if you were exposed to something over there that has thrown your system out of whack (I'm thinking toxin as opposed to parasite, but worth ruling out).

[mom61508]

Originally Posted by Peggy O'Mara 

I sure hope you get this figured out. It must be so scary for you not to be able to breathe and you must be overwhelmed by how quickly this all happened.

I'm amazed at your detailed response, SBGrace. I was also thinking sleep apnea and reflux too.

Could you have picked up a virus in Japan? Maybe 2 weeks is not enough time to feel back to norma. Do you think that your health care people are not doing enough or is it just the frustration of the situation? My dad had good results going to Mayo Clinic for intractable things. There's one in Arizona.

Hope you get some relief soon.

Wow thanks Peggy for your insight! SBGrace gave such information. I have had thses symptoms for  5 weeks now. I think it's both I mean I've had every heart test possible besides actually looking inside my arteries. I've had MRI of brain and chest CT with dye. I'm so anxious about the situation I'm starting to think I have some serious illness :( I have an appt with a mayo clininc doc thursday so I'm hoping this will be promising.  The last two nights I actually had some burning in my stomach have slightly still. The burning is not in my chest but in stomach and my throat burns a bit too. My ears feel sore too inside. When My ND looked inside my throat today she said it looked fine...weird.

 

[mom61508]

Originally Posted by heatherdeg 

This is what I was thinking.  That or your body needs to detox (which would also throw your thyroid out of whack).  Absolutely by all means--the things suggested here for apnea, pulmonology and cardio should be exhausted but I would see if I could simultaneously find a good naturopath (or even an infectious disease Dr.) that could run parasite and environmental toxin levels to see if you were exposed to something over there that has thrown your system out of whack (I'm thinking toxin as opposed to parasite, but worth ruling out).

This is interesting. It's a possibilty I guess. the air was not so great there. Anyone know how to rule out gerd or reflux???  

 

[mom2anangel]

It could certainly be asthma. As Munkimum's DH said asthma varies.  I was diagnosed in childhood and have had it for 20 years now, but I know people who have had a sudden onset triggered by allergies.  I spent a year in S. Korea and was affected by the yellow dust.  This is a link to the yellow dust levels in Japan around the time you were there  http://www.survivingnjapan.com/2011/05/yellow-sand-in-japan-how-does-it-affect.html.  When I have an allergic reaction to anything I have all of the symptoms you are describing, and they usually last 1-2 months depending on exposure.  My asthma is the type that is allergy induced.  I wish you luck in finding the cause of your problems.  Also you can go to almost any pharmacy and purchase a peak flow meter from refill counter.  I highly recommend using it 2-3 times a day and charting your results, especially before and after inhaler use.  Again good luck in finding the culprit.
 

[MotheringBliss]

Try Pleurisy....I went in For EKGs ect, turned up nothing....Took supplements to reduce microbial count, enzymes & alkalizing minerals, cleared it up!  Worked on adrenal issues too.

http://en.wikipedia.org/wiki/Pleurisy

[mom61508]

Originally Posted by mom2anangel 

It could certainly be asthma. As Munkimum's DH said asthma varies.  I was diagnosed in childhood and have had it for 20 years now, but I know people who have had a sudden onset triggered by allergies.  I spent a year in S. Korea and was affected by the yellow dust.  This is a link to the yellow dust levels in Japan around the time you were there  http://www.survivingnjapan.com/2011/05/yellow-sand-in-japan-how-does-it-affect.html.  When I have an allergic reaction to anything I have all of the symptoms you are describing, and they usually last 1-2 months depending on exposure.  My asthma is the type that is allergy induced.  I wish you luck in finding the cause of your problems.  Also you can go to almost any pharmacy and purchase a peak flow meter from refill counter.  I highly recommend using it 2-3 times a day and charting your results, especially before and after inhaler use.  Again good luck in finding the culprit.
 

Wow thanks for that site! wish I had it months ago lol! It's been about 6 weeks now but I've been having more symptoms. Burning stomach,nausea,loss of appetite and pain on my left ribs when I press on them.could be completely non related tho. 

Originally Posted by MotheringBliss 

Try Pleurisy....I went in For EKGs ect, turned up nothing....Took supplements to reduce microbial count, enzymes & alkalizing minerals, cleared it up!  Worked on adrenal issues too.

http://en.wikipedia.org/wiki/Pleurisy

I wonder about this. Ihad a chest x-ray and ct and they didn't mention anything about pleurisy. What did you do for adrenals specifically?

 

[MotheringBliss]

To "rebuild" adrenal function I've increased all mineral intake & lots of mineralized salt, minimized stimulants, adrenal supporting herbs, disciplined sleep cycles, (no more all nighters!) and do not put  myself in potentially (unnecessary) stressful situations.

With the chest pain, I've come to believe the vunerability was caused by unresolved grief due to the relinquishment of my first born for adoption.  Maybe there's something trying to get your attention?

[sbgrace]

Usually if reflux is suspected they recommend a trial period of a reflux med. Often it's a PPI (prevacid or prilosec for example). It takes up to two weeks for a PPI to work. I think the H2 blockers work faster (zantac for example) though I'm not sure. These are available over the counter now. If symptoms resolve it's indicative of reflux. Now how to treat it (drugs or natural methods) is a whole other thing from diagnosis. There are more invasive ways to check for reflux. At least in kids they don't do that. Those other symptoms do make a person think reflux might be behind this. H. pylori causes burning stomach pain too FWIW.

[mom61508]

Originally Posted by MotheringBliss 

To "rebuild" adrenal function I've increased all mineral intake & lots of mineralized salt, minimized stimulants, adrenal supporting herbs, disciplined sleep cycles, (no more all nighters!) and do not put  myself in potentially (unnecessary) stressful situations.

With the chest pain, I've come to believe the vunerability was caused by unresolved grief due to the relinquishment of my first born for adoption.  Maybe there's something trying to get your attention?

I know my adrenals are shot I'm sure. I have slept since I had my second child so 16 months now. the last 6 weeks has been the worst with no sleep. these sensations of not breathing keeping me up all night. So naturally I have anxiety about even going to bed at a decent hour.  It's not really pain it's a constant pressure and tightness in my chest. You're right tho someting could be trying to get my attention. I was very stressed in Japan before all this started. DD2 got sick with a virus for 5 days with a temp over 105, then DD1 got  a nasty cold with pink eye, husband is gone through all of this, had a hard time finding healthy eating choices so we ate more sugar and carbs than normal, I was worried constantly aout where we were sourcing food because of Fukishima, no family around and not speaking the language. 

Originally Posted by sbgrace 

Usually if reflux is suspected they recommend a trial period of a reflux med. Often it's a PPI (prevacid or prilosec for example). It takes up to two weeks for a PPI to work. I think the H2 blockers work faster (zantac for example) though I'm not sure. These are available over the counter now. If symptoms resolve it's indicative of reflux. Now how to treat it (drugs or natural methods) is a whole other thing from diagnosis. There are more invasive ways to check for reflux. At least in kids they don't do that. Those other symptoms do make a person think reflux might be behind this. H. pylori causes burning stomach pain too FWIW.

Sbgrace do you know If these meds are ok with nursing?  I'm currently nursing my 15 month old. Debating on whether or not I should contiue:( with all my current health issues and I'm 104 pounds currently my norm is 113. I'm over 5' 5" so I'm very thin right now. I get scared the weightloss is not contributed to nursing but something scarier like cancer :(  I'm doing a barium swallow tomorrow to check for a hernia. I'm haaving tenderness in the upper abdomen and a little towards the right. 

 

[sbgrace]

Originally Posted by mom61508 

Sbgrace do you know If these meds are ok with nursing?  I'm currently nursing my 15 month old. Debating on whether or not I should contiue:( with all my current health issues and I'm 104 pounds currently my norm is 113. I'm over 5' 5" so I'm very thin right now. I get scared the weightloss is not contributed to nursing but something scarier like cancer  I'm doing a barium swallow tomorrow to check for a hernia. I'm haaving tenderness in the upper abdomen and a little towards the right. 

 

Super "hugs" to you. I can see why you're scared.

You can do those meds while nursing, yes. Children your son's age and younger take them directly. My son started PPI's at 6 weeks (when he spit up blood and stopped eating ) and was on them until 3.5.

[mom61508]

So barium swallow didn't show anything besides some reflux. mucosal lining looked good tho so no damage there either. Next I'm dong an OATS test. My bloodwork for other autoimmune issues came back negative. Hashis antibodies are non detectable. 

I wonder how accurate the OATS test is? 

What other tests can I have done?