Pots, Born With It Or Trauma?

[lotsicker]

Hi,

I thought I would ask the question of what caused your POTS so that we can see how many were born with it and how many got it later....

Mine was caused from carring twins then having a TERRIBLE delivery(babies were perfect at 5.14lbs and 6/11lbs!). Blood volume was a major issue along with infection. My first full fledged POTS attack occured 14 months later though I never felt quite the same after the delivery.

How about you??

[delphicdragon]

I was probably born with. I have Ehlers-Danlos Syndrome which makes my veins extra stretchy. It took many years of actively looking to finally get that diagnosis as well as the POTS diagnosis.

I think extra stress in college coupled with a strenuous work schedule triggered a few attacks and made me decide to get tested; however I think I've been feeling symptoms since I was 8 (~25 now) when I would black out if I stood up too fast. It was so weird when I found out that wasn't normal.

Sara

[icesktr189]

i noticed symptoms when i was around years old. They were nothing compared to now.. they got a lot worse when i was in college and going to school full time, working full time and thats when I started drinking. I was also taking caffeine pills to stay awake. Im pretty sure that combo did it for me..

[turtlefairy5]

I believe that mine started with a virus that I had during the fall of 2005. I was incredibly sick, and had the worst lower back pain that I had ever had in my life. It was incessant, aching, throbbing pain. I tried Tylenol, Advil, Aleve. Nothing touched it. My vision dimmed, it felt like I was looking through sunglasses, I couldn't make out details, and this lasted even after I had otherwise started to feel better. It worsened when I was in a room (a store, my classroom) with florescent light. I believe that there was damage to my spinal cord. A nurse at the office of the neuro-opthamologist I saw said that my vision problem was due to the virus, and that the virus remained in my system even after I felt better, that the fluid in/around my spinal cord increased and put pressure on my spinal cord which caused the vision problems, and that once this was relieved, my vision would return and I would feel better, it would just take time, there was nothing they could do.

A few months after that, I got pneumonia, then just about every cold that came my way. I was often exhausted, and because of that, irritable. I went through a heavy episode of depression the next school year, and left my position as a teacher. Over the summer, with less stress, I felt better, but had scary episodes of sudden fatigue often. I tried again to teach, at a different school, but again caught every cold and virus that came my way and again, was very irritable and stressed because of the constant colds and exhaustion. In February of last year, I landed in the ER for the first time with a heart rate in the 190's. In March, I resigned from my teaching position. Later that month, I was in the ER again.

Getting my diagnosis was a long and twisted road, and would've never happened had my therapist, who has no medical background what so ever, but does have Mitral Valve Prolapse, suggested what is a poor man's tilt table test.

In any case, since my diagnosis, I have come to believe that I've had dysautonomia for years as a result of that virus.

Amber

[UtahApoc]

Mine is a very long, and yet to proven theory.

When I was born I was smart and did not want into this world. The Dr. was forced to use forceps to bring me out. The forceps had been used to hard (evidenced by two "Frankenstein" bald spots.) Later in life I started to have a nervous tic in which I twirl my head a bit. (imagine nodding yes and no at the same time) My belief is the forceps use caused some motor reflex damage that caused the tic. So I spend my life with a twirling head which constantly is manipulating the neck area. It has been shown that certain neck injuries can bring on the Dys. I started having symptoms (unknown to be Dys at the time) throughout my teen years. I later was diagnosed with Idiopathic Hypovolemia. So is this what happened to me? I may never know, but the few Drs. I mentioned it too seem to feel its a good possibility. Maybe the answer will come if I ever can get to a true ANS clinic.

So in short.... Forceps>>Brain Injury>>Head Tic>>Neck Injury>>Dysautonomia

[erikainorlando]

I had a virus in Sept. Not a very bad virus but took many many antibiotics. I never felt right after the virus. I was miss diagnosed for months and kept getting worse and worse. In Jan I finally got to where I couldn't walk and they noticed the tachycardia. Finally in Feb. a great EP said...I know what this is. We did a TTT and confirmed it.

Good topic..thanks

Erika

[Lizzegrl]

AFter going over my medical history lliterally from birth, Dr. Grubb has said that he thinks I was born with POTS and have had episodes of it through out my life. It ws treated differently at various times to treat the symptoms, but never the underlying cause. They feel my first episode was within a week of birth! I was readmitted for multiple fever, seizure, brain swelling at one week old and was in the hospt. for over a month. I was a month early, so it wasn't that unusual back then. Now, they think it might have been my first autonomic system crisis. I have had years in which my condition was great, hardly any trouble, and then boom. back it comes with a vengance. There is no rhyme or reason to when it happens. I'm in a crisis right now, and am just resting, taking my meds as directed adn waiting for my next trip to ohio to discuss Some new meds, or mast cell testing.

[ajw4790]

Hi,

Mine appears genetic. I started having symptoms very young.

If you are interested in this topic further, it has been discussed many times in different threads. To find old threads use the search feature on the bottom of the page. I just wanted to add this because many of the people who have posted here for a while that have answered this a few times may be less likely to respond. So, to get a better overall view looking at previous posts would be beneficial. There has been polls etc. on the topic.

[Rachel]

My health problems are genetic. I have hypermobility type EDS. Before I ever got POTS I had trouble with the hypermobility. As a child I had joint pain and ligament problems. I've had GI problems most of my life (I don't remember not having GI problems), some of which is probably due to the EDS. I first noticed POTS when I was 14.

I was diagnosed with hypermobility when I was 12, I think. Dr. Grubb also mentioned this when I saw him in 2007. He doesn't believe that the hypermobility is the only cause for my dysautonomia because it wouldn't cause symptoms as severe as mine. However, he said that it certainly can make things worse since it exacerbates the blood pooling issue for me.

A couple of my doctors believe that the root cause of my dysautonomia is a mitochondrial disease, which would be another genetic problem.

My sister also has POTS and hypermobility. There's definitely a genetic connection for the two of us.

Rachel

[lotsicker]

Hi,Mine appears genetic. I started having symptoms very young.If you are interested in this topic further, it has been discussed many times in different threads. To find old threads use the search feature on the bottom of the page. I just wanted to add this because many of the people who have posted here for a while that have answered this a few times may be less likely to respond. So, to get a better overall view looking at previous posts would be beneficial. There has been polls etc. on the topic.?

Thanks...I will check the older polls.? I am sure the older members get sick of the same old thing...I should have checked first, sorry

[ana13sanchez]

I started with syncopes about 2 months after my son was born, i had a surgery (cesarea) and now he is 6 years old, I don't know if dysautonomia was because of this, but everything has becoming so hard since then......

[karakal]

Mine started with a virus when I was 12 years old. But I got diagnosed when I was 23 years old.

[cvincent]

I became sick after an episode of anaphylactic shock that put me in ICU for three days. After that I was never the same. ( and we still arent sure what caused the alergic reaction )

Candace

[Shimoda]

Trauma. Shattered arm because of arm tumor, resulting surgery w/ anesthesia had complications.

[nblocksj@pacbell.net]

My daughter had very mild episodes as a child. Mostly spacey episodes and a dislike of crowds. She functioned very well and was a competitive soccer player. At puberty she started to get severe migraines, mostly aura without headache. She did get headaches daily but not necessarily migraines. She had a particularly bad aura of upper right loss of visual field. It never went away and was diagnosis as a stroke. She went on to have a brain stem stroke or a complicated migraine in her brain stem with lost of strength on the left side, loss of taste on the left, ataxia, tachycardia, dizziness, expressive aphasia. altered temperature sensation, severe right upper abdominal pain, and more symptoms of dysautonomia. It turns out she had a PFO (patent foramen ovale) a hole in her heart that has been correlated to migraines. The hole was closed and her headaches disappeared immediately. She has not had anymore migraines but developed POTS. There is a disagreement between neurologists and all other doctors as to the cause, stroke vs. complicated migraine. She recovered slowly and was doing well until she had an ERCP and had her sphincter of Odi cut. That got rid of her severe pain but brought on horrible POTS. She is slowly getting better but still we live minute to minute with a daily array of dysautonomic symptoms. So which came first ... we don't know, but it all seems related. So after my divergence I guess her is born with it and trama combined.

[carinara]

I had my first bad POTS crash down, shortly after my daughter was born but even before that, i remember that i never felt "right"

As a child and teenager, i remember not being able to stand long without getting dizzy and lightheaded, it was impossible for me to

stand and play my flute (in an orchestra) at the same time, i always pretended that i would do, but didnt.

I also remember feeling out of it, i used to describe it as a feeling of not being 100% there, and this one really scared me back then.

Another thing was the tachykardia i experienced from time to time. Thinking back i remember that i got prescribed my first Beta Blocker

at the age of 14. But i didnt tolerate them at all. But i still had quiet a normal childhood and teenage years, i did what everybody else did,

but very often i felt very bad with it.

[Tammy]

Virus in fall of 2005 started mine but had tachycardia issues only before this.