Sudden, brief, intense shortness of breath anyone?

[Young&sick]

Hey all,

First post of this forum. Im 22, and have been sick with ME/CFS since coming down with mono at 19. (Didn't know i was supposed to rest after mono, was playing a sport, which required heavy conditioning, at a competitive level and continued training when i should have been resting, crashed and never recovered).

Over the last year, maybe longer, ive had a weird symptom pop up, and i finally decided to post about it.

When i am resting (sitting or laying down) i will have a sudden, intense shortness of breath. It feels like someone snatched the air out of my lungs. I inhale deeply and feel fine. It happens every few months, but is very disconcerting. Ive had EKG's and ultrasounds of my heart done since being sick which have all come back clean, but none recently. I take daily multivitamins as well well as D-3.

Ive taken valcyte and am currently on my 4th infusion of rituximab, so i have my liver and kidneys tested regularly, and they seem to be fine.

Is this a common symptom? Should i go see my local doctor and get another round of heart checks done? Like i said it goes away immediately and i dont feel any worse than i usually do after, so up to this point i have chalked it up to another annoying, but not dangerous, symptom of this illness. Again it feels like i suddenly have no air in my lungs, and i have to inhale deeply, and it usually causes me to panic a little, despite not feeling anxious at all prior to the event.

Thanks,

M.

 

[Sparrow]

The trouble with heart tests is that with weird things, they generally have to catch it in the act to determine what's going on. So in my experience, unless it's happening frequently enough that you can catch it on the monitors, they may not be able to help you. Can't hurt, though. What you're describing sounds like a significant thing. It's just trying to get a doctor who's able to identify what's going on that might be hard. It does not sound like a common ME symptom to me (aside from the fact that we all have misc weird stuff).

I get severe shortness of breath when my heart rate spikes, but that seems unlikely to be happening while you're resting.

I will also sometimes get the sudden sensation of suffocating that lasts for a second, but that is preceded by a little twitch/stutter in my heart, which you didn't mention, so it seems like it may not be the same thing as what you're describing either.

 

[Young&sick]

Mmm, yeah thank you. I guess that all i can do is take solace in the fact that it only happens every few months. I have called my ME/CFS doc about it and they said they would look into it, ill mention it to my GP next time i see him.

Thanks again.

 

[maryb]

Ditto sparrow -
I get this too but also when resting - my heart rate goes up as well - my doc would just say its anxiety but I know its not.
I 've had heart tests come back normal, but I know its linked.
It goes away when I am feeling better (as in not as bad). I've thought it could be viral or bacterial related?

 

[taniaaust1]

I dont think what you mentioned is a common ME thing. I get breathing issues at times but different to that .. air hunger which is a common ME thing (feeling breathless is another common ME feeling esp during or after any kind of exertion) .. and of late Im getting some kind of reactiving virus thing flare when I over do it (my cough when it occurs sounds like croup), has currently making me have to take an asthma puffer. The reactivating viral thing is giving me an discomfort in my chest.

 

[Ema]

Air hunger is a common hypothyroid symptom.

Hypothyroidism is often missed in the context of ME/CFS because our TSH is often normal while the free hormone levels can be low or low-normal. You really need to find a doctor who is well versed in subclinical hypothyroidism to evaluate this over a traditional endo in my opinion. Important levels are TSH, FT4 and FT3. You can order the testing yourself to do through Labcorp for about $90 as well.

Ema

 

[Young&sick]

Air hunger is a common hypothyroid symptom.

Hypothyroidism is often missed in the context of ME/CFS because our TSH is often normal while the free hormone levels can be low or low-normal. You really need to find a doctor who is well versed in subclinical hypothyroidism to evaluate this over a traditional endo in my opinion. Important levels are TSH, FT4 and FT3. You can order the testing yourself to do through Labcorp for about $90 as well.

Ema

Yeah i take levothyroxine already, is there another set of thyroid tests i should have done? My doctor who deals with my thyroid (which was never and issue before getting ill) is just my GP, is it worth seeing a specialist?

 

[Hip]

If you have anxiety disorder symptoms (very common in ME/CFS), then anxiety disorder can provoke episodes of shortness of breath.

 

[PNR2008]

I've had hypothyroidism since the begining of symtomes and have to stick to synthroid. I get air hunger usually in bed and the first time it was scary, now after hundreds of tests including 3 tilt table, heart monitors etc. I notice it but nobody really has found anything even in ER and after EKG but that doesn't mean you might have another problem, just don't be surprised if it's another weird CFS/ME thing. My thyroid problem was hashimoto's disease.

 

[Ema]

Yeah i take levothyroxine already, is there another set of thyroid tests i should have done? My doctor who deals with my thyroid (which was never and issue before getting ill) is just my GP, is it worth seeing a specialist?

It's worth finding out if your thyroid levels are optimal in my opinion. This is something that you can easily work on with your GP if s/he is amenable.

Do you have recent labs showing your FT3/FT4? Generally men feel best with a FT4 of around 1.4 and a FT3 in the top third of the range. TSH isn't a good measure of thyroid function once you are medicated. I just try to make sure mine isn't frankly suppressed (below about 0.2).

Do you have any other lingering symptoms of hypothyroidism? Do you ever take your temperature?

Here are some good websites explaining subclinical hypo:

http://nahypothyroidism.org/
http://www.stopthethyroidmadness.com/

Ema

 

[TCP36]

I get that a lot. I have sinus tachycardia, but the shortness of breath is caused by the autonomic dysfunction. I have to let it pass and stay nice and calm.