JLB

Hi, Steph.

Hi, everyone. Wanted to say hello, wish you all well, and tell you I think of you all often. Hope everyone here is having the best possible summer - Blessings, Jen

Hi, Katherine. I haven't been posting lately, but I saw this and wanted to offer another idea: Are you in your 30's? If so, you may be heading into pre-menopause (very common in the 30's.) It can exacerbate POTS symptoms - especially with the thyroid thing - or, you may be experiencing what you would have gone through in menopause regardless of ANS dysfunction. Your symptoms sound very much hormone-related, especially the groin pain (which is what led me to consider pre-menopause.) Think of you often - hope you're past this quickly... Jen

I'm so sorry, Ernie. You're in my thoughts and prayers. Like persephone said, the love is forever. Please take good care of yourself - Jen

I think your tone is unnecessary and hurtful. I don't feel empowered, I feel torn down by your words. I am also quite aware that posts are not in direct reference to me individually - I am not the neurotic the medical profession has labeled me as being. My symptoms are real, and potentially life-threatening, and Janine's words were placed on a public forum; therefore you, and she, must assume the members will read her thoughts for their own use and towards their own point of reference. Janine is NOT my MD. She isn't anyone's, as far as I know, at least not on this board. If you think her words were necessary, and had no potential to cause fear - just completely benign and informative - then you're plain old mistaken. She could have placed her cautions here without revealing the fact of the many people she's seen die in the ER from heart rhythm disturbances. I don't think you have the right to address me the way you did. It was condescending, not comforting. It reminded me of the way the doctors talked to me, which is why I stopped going to them for so long. And it has served only to keep me from being honest about my fears. I wasn't exactly flooding the board with them in recent weeks; I put my thoughts here today only in response to Julia's saying exactly how I felt. I suffered for over 20 years before finding out what I have, and then was thrilled to discover that it's not a deadly condition. Janine's words took that assurance away from me, and it's impacted me. I'm aware that I don't deal with that fact to your standards of empowerment, so I'll be here only to read from this point on. And I'll keep my fears to myself. JLB, First we have NO guarantees in life. Second your doctor can doa test to see if you have sudden cardiac death probabilities and get a pacer or whatever **** chaney has. Third all of us have heart abnormalities, yet we go on if I panicked everytime I had a run of abnormal rhythms I would be paralyzed by fear. I think you are there. Get the work-up by your new doc, compression, fluids, salt, etc and you will have the best opportunity as the rest of us. Ragging on an ER nurse for telling us that we should be seen when certain things happen!!!!! That is responsible. I think its important for us to not put each post as if it were specific to US.!!!!!!!! It's info that we need to read and "file" and learn more. I don't mean to sound like a mean spirit, but I've read too many posts that attack certain people for sharing their info. Doctors may keep things from some people. However that I know is NOT the norm. Make your list of questions and take it to the doctor. Good luch with your appointment. Miriam And you shouldn't attack the ones who are damaged or bothered by the info. No one has "attacked" her like you have me. And BTW, she didn't only tell us to "be seen" - she went much farther than that. You know, some of us have trouble GETTING decent medical care. I tried for decades. As a result, I have a 20-year history of an "Anxiety and Panic Disorder" dx following me everywhere, and I don't blame myself that no MD will look beyond that. But believe me, I've been plenty tough for the 20 years people have been speaking to me the way you did here - perhaps, at my age and with my body as worn-down as it's become, I'm just exhausted. I really didn't need this whole thing right now. This hurt. Bad. Goodbye, everyone. My apologies for anything I've done to offend. Take care, Jen

Julie, I haven't been the same since this thread. I sink into panic and hopelessness a lot more often than I used to - I wonder if the MDs are lying when they say this won't kill you. I had a close friend, with no apparent problems other than palps and such, die suddenly last January of a heart attack. (She hadn't seen a dr. that I know of, though.) But the thing is, I don't understand anymore how this works - how it is that the heart stopping and starting and messing up won't eventually just give out. Even one of the other posters here had a mom who died in her 40's of sudden cardiac death. I don't come here much in recent days. I'm not sure what's allowable in posting anymore, and I feel so hopeless anyway - Janineern isn't lying, I'm sure, so that means she's posting the facts the doctors don't tell us. She's seen it so many times: People die from heart rhythm abnormalities, and I know I NEVER have a day without dozens - if not hundreds - of them. I'm still planning on seeing the new MD, but I really don't see the point anymore. Thanks for posting what I've been thinking for a while now. JB

I think the personal stories are a must.

Please do. Know how sensitive I am to alcohol? I had a small taste of the Jack Daniels sauce at a TGIF restaurant a few months ago - and I mean, just a small amount. Sauce with alcohol in it... Couldn't be a whole lot, could it? I was SO SICK afterwards, PVCs and arrythmias and the whole thing. I avoid alcohol like the poison it is to my system. Stay off it. If you've been having trouble, get yourself some help.

Count me in. What do I do first? FANTASTIC. Good thinking, Danelle.

No wheelies, Ernie. Congratulations!

You contribute plenty, Radha. Just by being part of the family. Wanted to comment on that allergy thing... I had some nuts on Friday night, and I felt like I had food poisoning within an hour. Really messed me up. The postprandial hypotension is a huge deal for me, too - makes the adrenaline kick in to get my BP back up, I suppose. Have you noticed if your pulse drops before you go tachy?

What's a chamber pot?

You know, as I think about it, I had this WEIRD thing going on with my ears about 2 years ago, maybe less - not long before the crash that led me to understand that I had dysautonomia. It was like I was kind of underwater, sort of - kind of echoing when I talked, and noises affected me tremendously, loud or not-so-loud. I think I'll try to find some info on how this may relate to dysautonomia. Oh, and I get loud, hissing/ringing things going on, too. Not too often, but often enough to be noticeable.

Hanging in there. What things do you do to manage your dysautonomia, other than the betas? I wonder if you're like me, and both sides of your NS are involved. I've read that's pretty rare, but if that's the case, the condition can get tough to manage. What other symptoms do you have?

My last storm went on for a month. Actually, I'm still getting back on my feet - the nights are tough still. The tachy in the morning... Blood pressure is lowest when we sleep. Boomerang effect when you wake up, maybe? I know I often awaken with my mind racing, and I feel the adrenaline start pumping - does that happen to you?