Information Overload Help?

[k&ajsmom]

I received today my records dating back to 1982 in regards to autonaumic dysfunction and abdominal "issues". I have to give my childhood docs. Some credit as they seem to have been ahead of their time. I have had many years of mild symptoms before last year when pots hit me and i did not remeber anything about these tests so i am trying to interupt them the best i can. Would love any feedback u guys have.

Firstly, i was hospitalized at 3 yo. For abdominal bleeding and internal vomiting...diagnosis was as follows: allergic entorpathy: reflux, esphogitus, carbohydrate intolerance, sucrose particularly. Suspect also; milk protein,lactose,corn and wheat (would have been nice to know this )

To speed up alittle i then at 5 was admitted for a week long study for autonaumic dysfunction in response to 6+ times a week neurocardiogenic syndrome.

Orthostatic testing:

Dopamine levels supine 23/ norepi levels 130/ epinephrine levels less than 20

Standing dopamine 26/ norepi levels 324/ epinephrine levels 52

At time of syncope after 11 mins tilted: dopamine 23/ norepi levels 255/ epinephrine 80

After being placed supine catecholamines were norepi 160/epi 132/dopamine 25

Does anyone know if these are normal or indicative or ..anything ?lol clueless#blink

I was then over time repeated on this ttt protocal every 3 months and had similar responses.

In notes it also says patient remained tachycardic with profound hypotension except upon one instance of mild brady with profound hypotension out of proportion. Brady appears to be secondary not the trigger and it is in response to syncope.

Also observed grade II/VI musical systolic murmor with superventricular ectopic beats at an average of 6 sve an hour with 1.18 seconds R-R intervals

Thats seems to be where they stopped althoug they recommended more tests i think my mom dropped the ball when i improved with meds. 8 was on .3 florinf Qid ( what!) And sodium and several stomach meds. The wierd thing is i dont remember so much of my childhood clear up to adulthood and i was never told about these findings. I have several more months till my specialists appointment and was wondering if anything stands out of importance here. Thanks guys; sarah

[Angela]

sarah, try going off diary/gluten one at a time in order to see where the intolerance is? maybe both or just one? my aunt is a doctor and she recently went thru a food elimination test and she always tended to tell me that she could eat lean meat, but found out she was allergic to all meat, including fish and dairy... thus now she is vegan. not the same for everyone and testing is expensive I guess. i am not hypotensive except suppine, right now, so I am not going to take bb's or florinef. I also have miscarried, lost my water at 3 months but son didn't want to leave me I suppose so it was 7 months of mind fk where I was only allowed to lay flat for over a month, feel my son who was going to die move inside me ( i was at a catholic hospital), except for bathroom and occassional shower. i didn't feel any signs of dysautonomia during that point, kinda started 1 year later i guess? I went back to work after 2 weeks, i needed to pay my rent, not sure if i ever sufferred ppd, I volunteered at a nursing home for a minute to take my mind off of things but didn't feel very valuable at that point, like they were just trying to create activity for me. I think I am infertile in many senses, have not been on birth control like forever....and have only been pregnant 2x that I know of ( i guess some gals don't know if it's miscarraige or aflow), regardless, i have 2 sons, one lived, one is in heaven. when i see your levels they dont qualify for hypo pots but anyone can correct me as I have never had that testing, i was only dx'd by neuro/epcardio based on symptoms/vitals and I would like to add that for most those vary day to day.

So here are yours, based on a certain day, certain symptoms;

Orthostatic testing:
Dopamine levels supine 23/ norepi levels 130/ epinephrine levels less than 20
Standing dopamine 26/ norepi levels 324/ epinephrine levels 52
At time of syncope after 11 mins tilted: dopamine 23/ norepi levels 255/ epinephrine 80
After being placed supine catecholamines were norepi 160/epi 132/dopamine 25

those are not "normal" statistics of hyper-pots from what i understand but def. show something is going on.

[k&ajsmom]

Bless ur heart...i cannot imagine. I went into labor with my daughter at 20 weeks but they stopped it in time to get another 7 weeks . U are very strong, i know sometimes its outta sheer nessicity but u made it, some would have given up. Hugs))

Now these reults were from 1983 and simialrly till 1990 off and on. Things are much worse now so im anxious get new tests done but was looking for clues from my past. I didnt think it look hyper...i think thoses levels are much higher? ? I also am not passing out like i used to either. But other than that...? Lol i found it intersting how much florineff i was on for over 3 years atleast.... .3 qid holy moly! Isnt that high for a kid especially!? They were also treating me with h2 blockers..hmmmm?

Im just so frustrated that i was living ignorantly to all the signs of this rearing back up....had no clue i was that sick as a kid. I geuss at 4 i was on amitryptiline for migranes!!! ***! I mean i remember passing out and migranes and tummy aches but i thought it was normal..till it went away and came back.

Anyways now im just venting lol thx for feedback angela ( sorry if my grammer etc is awful im on my phone lol)