Breathlessness And Shaking Episodes Anyone?

[BeforeTheMorning]

Hi,

I was wondering if anyone else gets episodes like these and if so do you know anything that helps with them.

I keep getting episodes where I feel short of breath and kind of like my breathing is coming in jerks and gasps,

sometimes it feels like the air is being jerked out of me and then I'm gasping for breath, if that makes any sense?

At the same time my arms start getting tingly and numb, sometimes I get a sort of unreal sensation, almost as

if I'm going to float off into space? (Again I'm not sure if that makes any sense or not, lol!) And I also start to shake uncontrollably.

It's like my muscles all tense up and shake. Sometimes it's my whole body and sometimes just part. Also once I start shaking

my breathing comes kind of in jerks in time with the shaking, almost like as if you were sobbing really hard.

I've had these episodes occasionally in the past, but now they are getting more and more frequent, and if anybody has any ideas

of anything that might help, or just have a word of encouragement, I'd love to hear from you.

I hope this post makes sense, I'm really awful at describing things, lol!

Lyla

[Becia]

I've had this happen to me too, normally while being heavily triggered by something (which can be something as seemingly minor as sounds or feeling of something on my skin). It's like my body goes into some sort of freak out overdrive, and it's really hard to handle.

[Chaos]

Here's a video of tremors similar to what I've experienced in the past. Also kind of the breathing issues I've experienced.

I think when you are describing the tingling/numb and "unreal" feeling, it's because of the changes in your breathing that are in effect making you hyperventilate for some reason. I think there is something physiological that happens that causes our breathing to change and then we get these sensations as a results. Because of the change in CO2 levels you get the resulting numbness/tingling and unreal feelings. If you talk to the people in the ER, they'll say you are hyperventilating (probably due to anxiety) and blame it on that. I don't think that's the case. From my experience, I personally think there is something that happens at a biochemical level first that leads to the change in breathing as a compensatory mechanism and thus the sensations that occur naturally from the change in O2/CO@ levels.

[Becia]

That is nearly exactly what I endure! Oh my word, I honestly thought it was just me who felt like that during a bad moment. I do try to do some yoga breathing techniques, count out my breathing to try and slow and focus myself, but normally I end up passing out, stop breathing according to those around me, and then end up gasping when I come back to. I usually feel pain when I come back to, my head usually hurts, I'm assuming from lack of o2, but if it's a bad out (as we call them, when I'm heavily triggered), I will not be able to move and will be extra sensitive to touch. It's not uncommon for me to scream from pain when my friends have tried to lift me or move me to a safer position (I can say passing out on the stairs totally bites).

[Chaos]

Sorry Becia and anyone else who has these tremors! They are miserable. I had them the first couple of years I was sick but haven't had them for the past couple.

Some research indicates that ME/CFS disease changes at the 3 year mark, so if, as some speculate, POTS and ME/CFS are all part of the same spectrum of disorders, then POTS may have a similar course. These tremors etc certainly look (and felt to me when I was experiencing them) more neurological than anything else.

Wonder if the woman on the video still has them.

[Becia]

I agree they do bite the big one. I'm just kinda glad I'm not alone in this feeling? And given everything else I'm enduring right now, it makes me wonder if there's some other testing I need to inquire about for what's going on. We are doing some seizure testing and such right now, which some of the meds I'm on for my pots can cause seizures, but it does make you wonder if there something else going on.

[artluvr09]

It seems as if you have panick attack. Sometiems I get panick attacks out of nowhere. I get very shaky and feel like I cant breath. sometimes when I am at rest or lying down even when I am at the computer I suddenly feel as though I go to breath in and I feel like I cant breath. I always feel unreal and that is mostly cuased by anxiety and if you have shortness of breath of course your going to get lightheaded just try deep breathing. its hard when you have health problems and anxiety because sometimes you wonder if something is wrong with your health but it sreally anxiety.

[Chaos]

artluvr09- yes, it's sometimes very hard to distinguish between panic attacks and the symptoms that POTS causes. Speaking only from my own experience, I can say that many docs and nurses told me I was having panic attacks because my physical symptoms mimic them. Personally I didn't have feelings of mental anxiety associated with the physical symptoms I was having. However, I did have massive drops in BP (like into the 30/20 range) right before having these types of symptoms so I am totally convinced there is a biochemical process that occurs that causes the symptoms. For me, anxiety is not an issue.

Since both our emotions and our physical symptoms from POTS are affected by the same neurotransmitters (dopamine, seratonin, norepinephrine, etc) it's hard to separate out which is which. Unfortunately a lot of us get labeled as being anxious or depressed when that is NOT the cause of our symptoms. For some of us anxiety is very much involved in our situations. For many of us, that is not the case and it's very frustrating for us when docs (and others) try to use those diagnoses and treatments which are not helpful and blow us off otherwise.

I'm glad they have found a diagnosis and treatment which seems to work well in your situation.

More than half the battle in medicine is getting the right diagnosis. Treatment is usually fairly easy after that.....assuming you don't have POTS.

[Chaos]

Beccia- I find it interesting that you do yoga breathing when you have these episodes. I practiced and taught yoga for many years before becoming ill, so naturally went into that habit when I would have these episodes or start to get lightheaded. Ironically slow, deep, controlled breathing almost seemed to make things worse in some ways.

Reading Dr. Julian Stewarts work on hypocapnia/hypercapnia (CO2 levels) in the brain and blood with patients on TTT I think he's onto something, but I still can't quite figure out exactly how it all fits with us. Seems like there is a paradoxical hypoperfusion from vasoconstriction to the brain that occurs when we're upright for some reason (in at least some POTS patients). Usually the body has a self preservation reflex where the brain is preserved at all costs and blood goes there no matter what. We're different and that doesn't seem to happen.

When you've been in the hospital after these events do your blood CO2 levels run high or low? Just curious. Mine always tend to run high so wonder if my body tries to hyperventilate to try to blow off CO2 as a way to change an acid/base imbalance that occurs. That's one way it can do it, if I remember right.

Did you have POTS onset after a viral or bacterial infection? Can't remember, sorry!

[Becia]

They believe the two heart ablations I had for wild pvcs started my pots decline, but they also think I've had it for years prior.

The yoga thing started because I could feel my heart racing with everything, and the yoga sent me to my "happy place" sometimes. There are times it works better than others, lately it's not been very effective, but it's the only thing I now that I can do that shows an effort that I'm trying to regain control of my breathing, and hoping my heart rate follows. Lately I haven't been very successful, lol. Lots of issues. I think it's also a way to stimulate the vagus nerve, if I read this correctly somewhere, which is something a doctor told me to try doing one time during an episode.

And I'm not sure about the co2 thing, because I stop breathing when I pass out apparently, and the only notice people have is the alarms showing I'm declining. Normally takes about a minute for everything to catch up, and I start breathing again normally on my own, although I have had to have help lately in the form of o2 to kinda stimulate me awake. It's all really weird.

[BeforeTheMorning]

Hi,

Thanks for the replies everyone.

Becia, like you I'm sorry anyone has to go through this, but glad I'm not alone!

Chaos, yes for me it definitely isn't an anxiety thing. I generally don't feel anxious at all during these episodes, they're just really unpleasant.

[TCP]

Yes I have them everyday and not always from exertion. I can do very little and get shaky and breathless. I hate the weakness and nausea with it.

[Hope]

This is hard to watch! The poor woman! I used to go through something like this about 2 years ago every morning after adrenaline surges, but not to this extent (I could talk and my body wouldn't come up so far) Now I get them once in a while when I am in a bad POTS episode. I've had a few this week in the morning again, but not that bad.

[Jon6945]

I can very much identify with the breathlessness, gasping, numbness/tingling, muscles locking up, and feeling like I am going to float away. My entire body and existence feels very numb and almost unreal. I used to have this symptom once in a while, but now it has worsened to the point where I have it pretty much all day and night. It is without a doubt one of my worst symptoms.

I believe it to be exactly what Chaos said above... imbalance in CO2 and 02 levels from the dysautonomia. I too was told for many years it was anxiety, depersonalization and all this nonsensical stuff, but I always new it was related to problems with autonomic neurologial and neuromuscular function. Finally 15 years later I have been diagnosed with dysautonomia and a neuromuscular autoimmune condition. But still, despite the diagnoses, I have been unable to find treatment that effectively manages my symptoms. Very frustrating,

I thought supplements that increase mitochondrial function might help..... stuff like Acetyl-L-Carnitine, Alpha Lipoic Acid, and COQ10, but I have never really had any luck with those. I always just get weird side effects and have to stop taking them.

But if anyone else has an idea how to deal with these symptoms I'd love to here some ideas. The breathlessness *****. Its just like i can't get rid of the CO2 in body and therefore can not get any fresh 02 in. So its like choking on stale air all day. And no matter how much breathing excerices I do, it doesn't change it and doesn't even help much. Probably cause these are suppossed to be autonomic functions and you can't really force autonomic function. But I think I start hyperventalating because my body is saying... "i need fresh 02" but my neurological system is not doing what it needs to do to get it. So its a push and pull all day long for what my body needs and what is capabale of doing. Seems like brain damage, but I really hope it isn't!

[Chaos]

I keep watching Julian Stewarts research in NY along with Julia Newton's group in England. They seem to be figuring out some of the connections with the CO2/O2 thing and it's connection to the autonomic nervous system. They are also linking it to cerebral hypo-perfusion which may be why we feel like we're becoming brain damaged- whether or not it shows up on MRIs.

Edited November 13, 2013 by Chaos

[Suds3630]

I get the breathlessness all the time. It's like I'm not getting enough air, like its been sucked out of the room. If I put a fan in my face it helps immediately! Again, it's like I can't get air, no matter how I breathe. My husband just looks at me when I flip the car vents on high and stick my face in front of it, lol. Yoga makes things worse for me, ( hands over head, head down, deep breathing,). also, I can no longer wear a strapless bra, the pressure on my rib cage triggers this shortness of breath episode. And of course hot weather and eating too much triggers shortness of breath.

[Suds3630]

Oh, one more thing, I had a 3 1/2 hour shaking episode last July. It wasn't painful, it looked like a Parkinson's episode, jerking, tremoring and crazy blood pressure changes. I haven't had one since.

[Confusedguy]

I definitely have the breathing issue. In my last visit with my Neuro she explained this is a normal part of the disease.

[gjensen]

More and more, I am having trouble breathing. Today was a bad day.

I have the shortness of breath with the trembling at night, waking me from my sleep. Most often it is soon after I go to sleep. I wake up feeling a need to swallow, which I do not understand. I stop trembling after waking, and it has been that I have been able to get my breathing in order after. That is getting more and more difficult.

The CO2 logic makes sense to me, because most often it has occurred as I drift off to the point where I should be detecting the CO2 levels rise and the automatic breathing kick in.

This symptom seams to be progressing.

[BeforeTheMorning]

So sorry for you anyone who is experiencing this all the time, that must be awful.

Does anyone know of any articles or videos explaining the CO2/O2 imbalances, and how that could cause this? I'd love to know more about it.

Thanks,

Lyla

[Chaos]

This is a link to an article that describes a possible mechanism whereby pH is disturbed in the blood, thereby causing problems with cerebral blood flow and thus CO2 imbalance. If you pull up the full article it has other articles referenced that also describe similar issues.

While the studies are about CFS patients they are investigating the orthostatic intolerance (POTS/NMH) issues that those patients have so these studies are probably relevant to us.

This is a link to one of Julian Stewart's articles on hypocapnia. Again, targeted toward the CFS patient population but looking at the ones with orthostatic intolerance issues. From this one you can find more links as well. This is an older study but he's done more recent ones along the same lines. I'll see if I can find one....

[Chaos]

Well, that didn't work. Not sure why the links didn't get included in my post again. I'll try again here.....

Julian Stewart's study: http://www.dynamic-med.com/content/6/1/2

Julia Newton's study: http://www.ncbi.nlm.nih.gov/pubmed/24179772

[Hope]

Chaos, thanks for posting the links. I as only able to view the second one, but it's good to see somebody is getting an understanding of this thing.

[Chaos]

Hopefully this link to Julian Stewart's study works. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1796865/

He has done several studies regarding CO2 levels (hypocapnia/hypercapnia) and hypoperfusion related to orthostatic intolerance in CFS patients.

[BeforeTheMorning]

Chaos, Thank you for taking the time to post the links, it's greatly appreciated.

Lyla