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Air Hunger


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Hi,

I have had moderate to severe air hunger for the last two days. I have it even at rest. At what point do I seek professional help? My neurologist is too far away for this kind of thing. I suppose I could try and make an appt with my regular practitioner? If I went to the ER, would they even be able to help?

Should I just deal with it? I mean, I don't think it is causing too much harm, other than being uncomfortable and tiring. I do occasionally get chest pain, but it is fleeting and mild.

These are the symptoms that drove to seek help in the beginning.

I am on Midodrine 7.5 mg twice a day.

Thank you,

Julie

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I'm not downplaying your symptom but I get this often. As a matter of fact, I had it so bad last night that I couldn't sleep. I have no clue what brings it on or how to deal with it so I just try to ignore it. If you have a pulse oximeter, check your oxygen levels. If they are normal, it is likely your Dysautonomia. If it is low (93% or lower) then seek help. If you "feel" like you need to seek help or that "something is just not right", you definitely should seek help. I agree with the others...a walk in clinic may be better than the ER. Please let us know how it goes.

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I think for me it seemed more exacerbated at rest for some reason.

It was like all those intercostal muscles between the ribs were just weak and it was such an effort to breathe.

It was difficult to imagine ot could get better.

I worked in a nursing home so I saw people with breathing issues that were just chronic or got progressively worse.

Same with my heart when it raced so so fast I just couldn't imagine that it would ever slow down.

I looked at my husband and cried and said these things don't get better,

Well I'm happy to say I was wrong.

I have improved that way.

In fact my heart feels so quiet at times now that I actually feel my carotid or use my bp monitor to check out my pulse and it's totally normal...

I still have POTS issues and it's always changing right now it just seems mostly to be affecting my stomach digestion and or making it difficult to eat a lot of foods. I seem to react to many foods and not tolerate them like my system is just way too sensitive.

It's hard to turn around and give my kids the same food that does that to me.

I think ---how in the world do they eat that???

I look back now and wonder why I didn't report more of my symptoms....

Or try to get help and even with that be evaluated for whether I should even be trying to work as sick as I was....

That is why I don't want you to have to feel that you just have to assume this is a normal part of POTS that you have to live with.

I wish I would have done more for myself....no harm done I'm okay...but it can just be scary and isolating to not know.

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You're asking a very good question. Wish we could get a very good answer! ;)

I've asked my doctor the same thing.(He didn't have an answer.) The one and only time I went to the ER, I was sent there by an urgent care MD. THAT was a total waste of time and money. When they sent me home, after doing NOTHING (and I do mean that literally..like not even an EKG) they gave me a list of symptoms that would warrant returning to the ER for further care. I had 75% of the symptoms on the list at the time of discharge and they completely blew them off. So I pretty much told my husband, unless I'm unconscious, don't even THINK of taking me to an ER from now on.

As far as the breath hunger... it's miserable. Have had it last for months during my worst spells. Glad you've found the antihistamines to be helpful. Hope they continue to help you out.

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Thanks, everybody. After doing some reading around the site, I tried a Benadryl and it worked! Within two hours of taking it, I feel able to get air normally. That makes me think I better learn more about this MCAD thing.

Julie

Wow....maybe I should try that. See, that's why I love this place: ask & you will find answers (or at the least, camaraderie).

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LOL!!! I've had the same experience with the ER that you just described like 3 or 4 times (prior to my Dys diagnoses). Of course, one of those times I really needed to go b/c my potassium was low and causing cardiac arrhythmias. But my Dys Doc warns me to stay away from the ER as much as possible. He doesn't want them messing me up. :D

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What dose benadryl do people take?

Years ago I took it as a sleep aid but could only do 12.5 mg (half a dose) - makes me nervous to try it if it is going to knock me out

I took 25mg, but that was all we had in a liquid cap. I knew I would be in bed with my DH right there, so I wasn't too worried to at least see if it made the air hunger better. Besides, I was miserable with the air hunger and needed to get relief somehow. I weigh 135 pounds.

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[What dose benadryl do people take?

Years ago I took it as a sleep aid but could only do 12.5 mg (half a dose) - makes me nervous to try it if it is going to knock me out

If I ever take it, I'll start with 12.5mg or lower. My doc tells me "slow & low" and I mean, a very low dose!

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Before my dx and "proper" meds, I was taking 25-50mg of liquid Benadryl every 4-6 hours. It never sedated me, but then it never had. I was told that Benadryl has some yet unexplained effects on the central nervous system, it's antihistamine properties are actually more of a byproduct. Until the Propranolol, it was the only thing that would control my tremors. The liquid works faster than the pills. I keep a LOT on hand since my son has severe allergies.

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I have also had the feeling like I have a ball wedged in my throat. I have wondered if this might be related to esophageal inflammation, which apparently is common in mast cell disorders. It has improved since I began the meds listed below, but is still annoying when I lie on my back.

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I have also had the feeling like I have a ball wedged in my throat. I have wondered if this might be related to esophageal inflammation, which apparently is common in mast cell disorders. It has improved since I began the meds listed below, but is still annoying when I lie on my back.

I didn't have that as part of it. It was more of a need to take such a large breath that it was tiring and painful to get enough oxygen. There wasn't a feeling of obstruction in any way. I am glad your symptom has improved with meds.

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Could be the barometer also affecting your feelings of being air hungry. When it gets really rainy or snowy here, I know that there is a good chance I will feel oxygen deprived. Typically if I take Xanax (very small amount), it really help to take away that feeling and it's like I can breath again -- probably works similar to benedryl by decreasing the activity of the sympathetic nervous system.

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Could be the barometer also affecting your feelings of being air hungry. When it gets really rainy or snowy here, I know that there is a good chance I will feel oxygen deprived. Typically if I take Xanax (very small amount), it really help to take away that feeling and it's like I can breath again -- probably works similar to benedryl by decreasing the activity of the sympathetic nervous system.

Not sure. I have started a journal since this happened, so that if it is something triggering it, maybe I can put my finger on it. Although, I hadn't included weather, lol. Might have to add another column!

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LOL. You sound like me. I have a chart I fill out every day to try to track trends in my symptoms. My husband laughs and says I have the best documented disease he's ever seen. :P

I definitely have noticed an increase in breath hunger associated with barometric pressure changes, but then I also get migraines from that too, so I may just be sensitive to it.

I also get that feeling of pressure in my throat intermittently. Feels like it's right behind my thyroid and presses against my throat. Doesn't feel like it interferes with my breathing, just uncomfortable.

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