Our Demographics Part 2

[mwise]

I got the flu real bad in Feb-March of 2010 and spiraled out of control til diagnosed in December 2010. I really believe it all started in Nov. 2005 when I had my gallbladder out. I never was right after that. I felt fatigued all the time, had IBS and still had stomach discomfort. I managed to have some normal life from 05 until the last flu in 010. It finally caught up with me and with a big passing out at work & being transferred to the hospital to finally get the diagnosis of OH Dysautonomia & Autonomic Neuropathy.

[sandymbme]

I have EDS (type III) which causes my POTS, so I said I have had it all my life. The earliest I recall having symptoms is when I was 17. (Side note: I got up to get a drink while writing this, and had a full syncope episode on my way to the kitchen. Fortunately I passed out while still in the living room, and over carpet. But I bruised my knees and hip in the fall. Curses!) And my symptoms pretty much disappeared for my twenties, only to re-appear with a vengeance in my thirties. I am 36 now, and totally disabled, I haven't been able to work in over a year, and will not be going back ever unless things change dramatically. Which looks unlikely. But my life works better for me, and I am FAR happier then I ever could have dream. My illnesses has forced me to address and confront issues that has been haunting me for years. With therapy and a fantastic support network, my life is better than I ever could have dreamed, even if my health is terrible.

Sandy

[wyominglacey]

I marked my "trigger" as pregnancy because it's very ironic that it just came on right afterwards and after my complicated delivery. The other ladies who have POTS/dysautonomia as their trigger. Did you have complicated deliveries, large blood loss, etc?

Thanks, I was just curious about your situations and was wondering if it was anything like my own!

I think a lot of mine was triggered by pregnancy as well. I had a normal delivery and pregnancy. Pregnancy is also what triggered my thyroid to go crazy, which i had removed, and I think that is a reason as well. It got even WORSE after having the thyroid surgery.

[Libby]

Sorry Libby - I just saw your post. I added "puberty" as a trigger, if you still want to vote.

Thanks.

I think my trigger was puberty. I know that I started blacking out (but not passing out) on standing around 13.

But I have had some symptoms which could be attributed to dysautonomia for as long as I can remember. I know I've had a fast heart rate (high 80s/90s resting) since I was a kid. I remember being in grade school health class and lying about my pulse because I didn't want to be in the 'out of shape' range. lol. I've always hated heat and I always been easily fatigued - or, as my parents would have said, lazy. It wasn't until college that I really had a problem with tachycardia, though.

And part of me suspects I have a mild case of Marfan's Syndrome, so genetics may play a part in there as well...So either puberty, genetics, or just I had it all my life. Or maybe there really was no identifiable trigger and it's all coincidence. Hm. Looks like I'd have done better if the poll asked what definitely did NOT trigger my POTS. lol

[targs66]

I have neurally mediated hypotension. To be honest, I've never completely understood if that's the same thing as NCS, or whether it's in its own category!

[misstraci]

thank you to those who answered my pregnancy related question

[Yolaclover]

may have been caused by celiac, malabsorbtion/dehydration

[peregrine]

Diagnoses: POTS (or something like POTS, but they won't send me to Neurology because of the arrythmia), plus an atrial tachycardia (based on the p wave morphology on my Holter).

Originally thought to have been triggered by Cymbalta (for fibromyalgia and hypermobility syndrome pain), but now they're not sure.

[MomtoGiuliana]

The other ladies who have POTS/dysautonomia as their trigger. Did you have complicated deliveries, large blood loss, etc?

I had large blood loss -- required emergency c-section under general anesthesia. I definitely already had POTS at delivery--2nd half of my pregnancy I had severe POTS. Was not diagnosed though until much later. Anyway, POTS got even worse after the delivery and I was quite sick for months.

[sandymbme]

I voted "other" for trigger. I have EDS (Ehlers-Danlos Syndrome) and that caused my POTS. Lucky me!

Sandy

[rubytuesday]

Did I get all the major forms of dysautonomia? - I drew a blank after the 1st three. Should be interesting to see our results all grouped together like this (if lots of people answer - I hope, I hope).

Naomi,

Under what type I have, cardiac specialist told me definitely orthostatic hypotension but that my autonomic nervous system was failing (and there would be more fainting episodes without warning. Hopefully the Rxs will at least keep the BP up, but he added to expect a pacemaker down the road as the heart rate is no longer tachy when the BP drops).

Under what triggered the beginning symptoms, I put trauma or surgery. It is a tough call. My symptoms with the near syncope started Jan 2009 and they progressed to syncope too many times to count until finally getting in to cardiac specialist in Oct 2011.In March 2003 I hemorrhaged after a sinus surgery and then became very debilitated from C-difficile infection from being on antibiotic so long before and after the surgery. In Apr. 2004, I was struck by a car and received a lot of trauma--to this day I have pain every minute of every day in my SI since being struck. It was not until Feb. 2011 that they discovered that my glutteal muscles and tendons were ripped off the hip bone when I got hit. In Nov. 2006 I had a solidified mass of infection (2nd attempt to remove) in my sella turcia (from a transphenoidal hypophysectomy in 1982) removed with a piece dislodging and embedding in the bone. The neurosurgeon/ENT thought they had removed it all, but I was deathly ill with respiratory/sinus infections and pnuemonia until it was decided they did not get it all and in June 2007 I had to return to surgery for another debridement. But the fact is once the infection is introduced into bone, the organisms seed themselves and it is impossible for the infection to be totally removed with debridement. Ergo, I have osteomyelitis (and am immunocompromised). In Sept. 2010 I had an osteotomy/bunionectomy on one foot and bunionectomy on the other--both incisions of the 'bunionectomy' foot split open before even leaving recovery room. I hemorrhaged with both feet. The foot that dehisced had to have the cast removed within days (while ortho had planned on keeping them on a few months). I had to have legs elevated and could only use heels to walk until Dec. 2010. This was when I really noticed the heaviness in my legs. I started the treadmil as soon as ortho gave the ok, and stationary bike until warmer weather, then back on my standard bike (always rode 10 miles/day). I couldn't understand why the legs were so heavy still and I was so winded and the heart palpitations so strong. I had a couple of episodes on the bike, so I put that away until they figured all this out. So I was really not sure. I had fibro diagnosis in 1998. I am a bleeder (life long). Things really took its toll on my body when I got hit by that car. I don't know if it was a slow progression or if the osteomyelitis keeping the body in stress or what.

The questionare said to explain below but there wasn't a place I saw to let me explain.

[Kirsti]

I chose other for my trigger because mine could have been caused by an accident, illness, genetics, or puberty.

[Lackadaisy_baby]

I chose "no identifiable trigger" because I haven't had enough testing done yet, although my B12 levels may play a role.

Diagnoses: POTS (or something like POTS, but they won't send me to Neurology because of the arrythmia), plus an atrial tachycardia (based on the p wave morphology on my Holter).

Originally thought to have been triggered by Cymbalta (for fibromyalgia and hypermobility syndrome pain), but now they're not sure.

I had a similar arrythmia issue with my tilt-table test. HR went up like it should with PoTS, with sporadic bursts of some kind of other tachycardia. I'd had two holters before that though, and it didn't show up there - or if it did my cardio. didn't think it was frequent enough to cause concern. Very frustrating...

[bellgirl]

Does that mean we can delete and resubmit? Just asking??

[bellgirl]

Sorry, I didn't look through all the answers on page 2 and 3. Why do I always do this? Dysautonomia, maybe...lol

[bellgirl]

Oh, btw, for the ladies with the pregnancy issues. I bled heavily after my second child, and the year before that I had a miscarriage of twins at about 4 months...so now I wonder whether I had it all along, but it was triggered severely by a virus, thereafter...I did near faint, blacked out, when I was a child twice, too!