Anyone Else?

[mvdula]

OK, I seem to have 2 different types of 'spells'. 1) One is weakness, dying feeling (had this commonly at beginning of POTS, only a few minor ones of these recently) - thank God - these are the suicidally depressing type; 2) the other is this chest pain/discomfort/fullness. I have the chest one now - it is usually precipitated by certain things, bending over too much, etc. Not sure what brought this one one. The thing these 2 types have in common is that they both last about 1.5 hours. Unfortunately, the worry/crying/depression over them can last 1-2 days after. Klonopin helps symptoms and feelings.

I will describe the chest one more: usually starts with a very urgent/intense feeling in chest and also usually GI - have to go to bathroom, feel full, very adrenaliney feeling. Go BM usually....feeling urgent/panicky physically - trying to control mental panic response since this has happened many times - I *think* I am getting used to it. Then the chest part......middle of chest/more left pain?/fullness/discomfort/tightness - right now it also feels it is going through all the way to my back. It is not some intense extreme pain - just scary and very disconcerting. I am about 45 mins in, and know it will go away as it has before.

Anyone have this....or know what the cause is???????????????????????????

Oh, and walking around - not fast tho - actually helps both types of spells (I know, counter-intuitive and odd) - also walking around helps my migraines. This has to be some sort of key here as it makes me think the walking is having some vascular/circulatory effect....any thoughts

Also, I can't sit still or lie down for too long (tho sometimes I feel like it and need to)- doesnt help symptoms, and I can't stand it - maybe bc I need distraction, or because I need to walk to help symptoms....does this make sense to anyone???

[mvdula]

Oh, and I can't concentrate during these spells. Not sure if it is because I am so tied up mentally worrying about how I'm feeling or an actual physical reason. I usually walk around, then flit from one little thing to the other (like putting a book away, then typing email), then sitting and watching tv, etc. Strange??

[Maisie87]

Wow. I know both types of episodes you are talking about... unfortunately no I don't understand them either.

My weak/dying/dizzy ones are usually at night. My body gets so tired and so limp I feel like I'm painted to a bed that's spinning on a turn table. And yes, those are the depressing ones for me, too because I feel I have no control over my body--like I couldn't run out of the house if it caught fire.. you know what I mean?

The chest ones have started recently with me, within the last month. I don't know how to describe the feeling really.. almost as if my esophegus is spasming and then radiates to other parts of my chest. I'll get a weird pulling feeling in my chest.. like someone has a hold on my chest muscles and won't let go. My heart starts to beat in the base of my throat.. I take a few hours to recover as well.

I don't konw if my description makes any sense... but you are NOT alone.

as far as walking around, I did that, too when I was able to walk. Sitting still made the dizziness much louder and more obvious- for me it was helpful distraction.

feel better. i know it's frusterating

Maisie

[MamaTrain]

Definitely know what you mean! The 2nd one especially as it seems to happen the most. It does feel like it's goes right through to my back. Right about where the bra comes together in front and right to the back side! I absolutely HATE it when it happens. I just want it to go away so I can get on with whatever it was I was doing! A few months back it happened when I would eat really bad so I would walk afterwards and it felt better but the whole time I felt like I could just keel over and die! I would even take my cell phone just in case something happened! This is no way to live! Ugh!!! ;-)

KC

[StacyRN]

I think I know what you mean... I get chest discomfort too, kind of a tightness. But my heart is fine. Some of it might be related to heartburn, especially if you notice it after eating.

The thing that really gets me bad is the restless feeling, like I'm trying to crawl out of my skin, and it makes me want to SCREAM, and prevents me from sleeping... I have to sit up and shake my arms or do push ups to keep from going crazy! Does this sound familiar, or is it not what you are feeling? It's like I have the brake and gas pedal on at the same time, I'm exhausted, but so restless, it's a physical feeling, like my skin almost hurts, and I feel nauseated with it too, I even have to yell out sometimes... sound crazy, or familiar to anyone?!?

I have these pain pills, Tramadol, and they're the only thing that I've found that calms this feeling down, but I only have so many left, and I doubt my doctor will refill the prescription, and I'm SO scared of not having something to stop this horrible feeling! It happens in the evening/night mostly, and sometimes I have a low grade fever at the same time.

[snakeshoes]

The chest discomfort feeling sounds similar to what my wife goes through. She describes it as a feeling like it's not hard to breath, but it's hard to make the muscles and bones of her chest move when she wants them to. Hers is more drawn out and less episodic than what some of you are describing though.

One interesting bit of insight that we got the other day from her neurology visit is that her breathing tends to be more rapid and shallow than normal. Because of this, the CO2 level in her blood is lower which changes the pH of the blood and reduces its ability to carry oxygen which tricks the brain into thinking she can't get enough air so she breathes faster which perpetuates this cycle. He thought it was very likely just another symptom of the autonomic system being out of kilter and that the chest discomfort could be genuine muscle discomfort from overuse or a trick of the nervous system. The good news is that it is something that can be worked on with breathing exercises and such. Might be worth talking to your doctor about. It's called (not surprisingly) hyperventilation syndrome if you want to Google it.

I wouldn't be at all surprised, knowing how strangely the brain can be wired, that the anxiety and 'get up and go somewhere' feelings are some how related to the brain getting screwy signals telling it you're not getting enough air. It could also be why walking around helps it - it changes cell metabolism which puts more CO2 in the blood while also changing your breathing rate.

Just a random thought. It could be that what you're experiencing has nothing to do with this and I'm just playing a decent game of pattern matching unrelated things. Still, worth a look.

Good luck and be well.

[mvdula]

Thanks for all the responses! It does worry me that it may be/is my heart. Yes, I've had lots of tests, incl stress echo a couple years back. I don't think it is just a chest muscle thing (wish I could say it was), because of the generally bad physical feeling I have along with it. Like one of the reponses, feels like gas and brake pedal on simultaneously (this is the case w/ most of my bad POTS episodes of any type). I think if it were a chest muscle pain, I would just feel it there, in my chest, and not have the urgency to BM, walking urgency, and general lack of concentration.

I have often wondered (this will sound strange) if maybe there's too much blood getting to my chest - esp bc I have problems when I bend over too much. I can bend over a couple times, but if I keep doing it, I realize (too late), I've made a major mistake and started myself on a 1.5 hr episode of strange chest discomfort/pain with the other general feelings I have described. This would be the opposite of angina, however, as I have read that bending forward can help angina as it sends more blood to the chest/heart area. (you may wonder why I don't stop bending over....I have 4 kids and a lot of housework....so I try to be aware, but sometimes concentrating on a task and momentarily forget that I have to keep my limits in mind!---as time goes by this is easier, as the consequences are nasty)

Feel like I am rambling - these symptoms are so hard to describe.

[mvdula]

also, this does sound familiar:

"The thing that really gets me bad is the restless feeling, like I'm trying to crawl out of my skin, and it makes me want to SCREAM, "

also, I do feel sometimes a strange tightness/fullness below my chest....maybe diaphragm/stomach - but very much in the middle - like a couple of inches under where my breastbone ends. very uncomfortable, tho it does not worry me as much since it is not accompanied by the general unwell feelings of my 'episodes'. I feel the need to push on it to make it feel better. This does seem somewhat related to eating tho - but I don't know what it is. I have also had a similar feeling in (I think) my diaphragm like it is tight or not getting enough oxygen - this one is disconcerting, but not like the episodes. Sorry this is also vague - POTS is bizarre.

[erik]

Sometimes I get an odd tightness in the middle thing that sounds similar to yours. Sort of tense up the abdomen as if bracing myself for something with each move... I'll even grimace, yet no pain, just an odd discomfort and defensiveness... holding myself in or something (responding to abdominal pooling or pressures perhaps???). I get single little baby coughs, like the lungs get a little mis-pressured. Can get a quick single cough right upon standing... or prone to little runs of them usually while staying upright. These sorts of things tend to come around along with my periods of worse orthostatic tolerance, and don't seem to be just lung issue, though I might get some luck with my albuterol inhaler sometimes. I happen to be getting this today, and lately... coming off meds and returning to my old self.

The brake and gas feeling sounds familiar... gears grinding opposite directions. Seems like things could get that way easily enough with dysautonomia... stuff going misregulated this way and that... torturous dyscomboblia. Depending on it's severity it could be akin to akathisia. Diphenhydramine is apparently thrown at that. Ironically, I personally get a nasty angst from taking diphenhydramine and shy away from it as a result but it isn't known for that of course. Toprol Tramadol is really intriguing... it's profile seems like a mild blend of helpful things. I wonder if dysautonomia docs have or would consider it? Obviously meds need caution and folks react differently but breaking out of dysregulated state is a key concern (one could argue it's a loose cousin of Efexor which is already on some of their lists I think).

[StacyRN]

Toprol is a beta blocker, brand name for metoprolol. Seems to help me, Dr. Grubb

Says its helpful in hyperadrenergic POTS. I haven't seen a specialist yet, but my symptoms

Seem to indicate the hyperadrenergic type, like the jittery brake/gas pedal feeling!

[Guest tearose]

I get different types of chest pains and have had to learn what they all are. You can too. It is by trial and era and going to the doc to verify what you think is correct.

It sounds like the pains you are talking about in me would be the kind that comes from too high a sodium level and insufficient potassium. Are you retaining more fluids or swelling? Did you increase sodium, meds or eat salty foods? How is your potassium level? If you have had runs of SVT's you may need to boost your electrolyte balance.

feel better and you know, when in doubt check it with the doc...again.

tearose

[erik]

Oops. Sorry. I got Toprol mixed up with Tramadol... which you mentioned as helping a lot, StacyRN. I meant to say that Tramadol is really intriguing with its profile and mild blend of many effects... not just a simple opioid. Seems like something dysautonomia docs could consider if they haven't already.

[StacyRN]

Thanks, Erik! I wish they would consider Tramadol for this purpose, because

it really does help. I'm going to do a little research on it and hopefully my doc will

listen... he doesn't know too much about POTS...