Please Help With This Symptom

[mvdula]

I have had this symptom before....usually refer to it as a chest episode, as it is different from my weakness episodes, but lasts about the same amount of time, usually 1+ hrs. It started today (late morning is typical) as a racing heart - I get this a lot at this time of day accompanied by major thirst. It kept racing and my chest started hurting - actual pain that seemes to move around and radiate - no shortness of breath, though I was trying to slow my breathing/exhale slowly so as not too freak out. About 30 mins into this came the next part of the episode: kind of an entire body raciness and urgent need to have a BM. I did go to the bathroom and have a BM, which was not diarrhea, just normal. This did not relieve the chest pain, however, which continued to wax & wane and move around/radiate (maybe a 4 on a 1-10 scale). It did somewhat relieve the general racy feeling, but I was struggling to keep myself from super-anxiety. During this time, I was walking, sitting, and driving. About 1.5 hrs later, it was over, but I still have a little bit of racy heart and feel on edge.

Does anyone have any theories or have you experienced this. I HATE it. I have had my heart checked and been on monitors many times, and they never found anything.

[lieze]

I don't know what it is-I do this too the whole toilet thing only usually I get a bit of relief after that but still feel wired.

I think you did the right thing to try to calm yourself down.

It seems to be the thing I always notice is I get so hyper during this I could just scream right out loud.

[daisy]

Hello,

I can definitely relate to what you are experiencing. My Dr. has told me it is due to my having an overactive vagal nerve....and vagal stimulated POTS and heart arrythmias. Bowel movements (or just the process of the bowels moving through the digestive tract) is a big trigger of vagal nerve sensitivity. I will often get a racing heart, lightheaded, nauseous, and feel like I'm going to black out prior to going to the bathroom. If it's a bad bathroom episode (I'll spare you the details!) it's not unusual for me to actually go into afib (which is a separate arrythmia issue for me but still can be stimulated by the vagal nerve problem). I've actually started to pass out on the toilet. It's pretty darn inconvenient! As for the chest pain, it is not an uncommon POTS symptom when our hearts are racing and even sometimes when it's not. It's a symptom I fortunately don't get too often because I HATE it! Anyway, you are not alone!

[StacyRN]

Read my other recent posting... it is my opinion that anyone with chest pain, hypertensive episodes, and hyperadrenergic POTS should have a pheochromocytoma ruled out... because they are FATAL. My oncologist told me that, because I have had all these things over the past year of being diagnosed with POTS, and I have an adrenal tumor which they are pretty sure is a pheo, and I'm having a MIBG scan this month to for sure diagnose it before they remove it.

I feel so strongly about this... they should NOT just say, oh well, it's part of pOTS that you have chest pain and hypertension! It could be a pheo, and it could be damaging your heart. I'm an RN, and I say most docs are wrong on this, and I think they'll find it out in years to come, but it will be too late for us. We need to be proactive NOW! Make them check for a pheo!!!

[mvdula]

Thanks, StacyRN. Sounds like you have worked hard to research and firgure this out for yourself. I did have my catecholamines checked and they were normal - can't remember the numbers, but I will pull them out and look. My norepi did not go up very much if I am remembering correctly. I do think though that something is being missed about my 'episodes', of which I have a couple different kinds. They are intense and episodic, not all day long at all, nor every day - provoked by exercise, heat, and sometimes hormones or nothing. They include some combo of: chest pain, feeling hot, feeling very weak, feeling wired, feeling like something is very wrong but I can't put my finger on it, it is a scary feeling that seems dangerous. My bp is higher than usual during these episodes - like 80/120+ (I know that is not that high), normally it is much lower like 70/115-60/90......and I feel fine with this bp. My hr does not change much, at least not sitting, usually 90-115. Any thoughts you can offer me as far as testing to pursue, etc. I would LOVE to find a fixable reason for my episodes!!!!!!

[StacyRN]

Thanks, StacyRN. Sounds like you have worked hard to research and firgure this out for yourself. I did have my catecholamines checked and they were normal - can't remember the numbers, but I will pull them out and look. My norepi did not go up very much if I am remembering correctly. I do think though that something is being missed about my 'episodes', of which I have a couple different kinds. They are intense and episodic, not all day long at all, nor every day - provoked by exercise, heat, and sometimes hormones or nothing. They include some combo of: chest pain, feeling hot, feeling very weak, feeling wired, feeling like something is very wrong but I can't put my finger on it, it is a scary feeling that seems dangerous. My bp is higher than usual during these episodes - like 80/120+ (I know that is not that high), normally it is much lower like 70/115-60/90......and I feel fine with this bp. My hr does not change much, at least not sitting, usually 90-115. Any thoughts you can offer me as far as testing to pursue, etc. I would LOVE to find a fixable reason for my episodes!!!!!!

If your catecholamines were normal... did you have them supine and standing? They're usually normal lying down, but go up when standing to at least 600 if you have hyperadrenergic POTS (according to Vanderbilt). I would ask my doctor if I could try clonidine for these episodes, I don't know if that's what you have going on if your cats are normal... but clonidine is what helps me with the hyperadrenergic symptoms... don't know enough about your case, but looks like you see Dr. Grubb, so you should be in good hands! Also, maybe get your thyroid checked? It can cause hyperthyroid symptoms that are much like hyperadrenergic symptoms. Otherwise, sounds like POTS... and I'm finding out that no one is the same, we're all a bit different in how our POTS affects us.

[mvdula]

Just looked up my catecholamine results. They took them after 30 mins of resting: lying down, sitting & standing. Here are my results, which look fine to me....anyone have any input?: (all pg/ml)

Lying:

Epi 38

Norepi 323

Dopamine (too low to report - under 10)

Sitting:

Epi 28

Norepi 332

Dompamine same

Standing:

Epi 39

Norepi 417

Dopamine same

[StacyRN]

Too low to be hyperadrenergic POTS. Probably the other kind of POTS (partial dysautonomia, PD type).

[mvdula]

Yep, I think so. The more I think about it, the more I think my POTS was caused by my ablation - see my poll on ablation. I wish it were a more 'fixable' cause, but who knows. It would explain a lot of my symptoms....esp that bending over now causes a lot of fullness in my chest (my SVT was triggered by bending over) and feeling bad - can't do it much. The things I am not sure it explains are: problems with heat/hot weather and my weakness episodes that last over an hour........these episodes may be explained by it though, since they are sometimes triggered by exertion - I cannot do any real form of exercise, have learned that the hard way. I hat the mystery of it, but have not had many responses to my poll. I have a feeling that there is a subset of us out there that ended up with POTS bc of ablation. I can't remember, but I think CatLady had an ablation too, and has similar symptoms....haven't seen her on the board for a while though...maybe I'll post to see if she's here...