k&ajsmom

Oh goodness,i have many. First is to wait patiently for my specialist appointment while increasing my upright endurance, then hopefully get my stamina back enough to return to work. If i could just stop the arthymias and stabalize bp i could get there. It sounds so overwhelming since ive been housebound since october but one step at a time...literally. =) i would love to get well and do the local mud run for charity in two years.

Thx guys, my magnesium levels in december were fine. I connot tolerate magnesium supplements,they make bathroom trips more freq. Lol Ive heard of align...ill have to compare the two..thx zap. And thx for the info. Ive been checked for celiac several times now. Even gluten free bread is rough..any food is hard for me to tolerate really. I know i have some allergies to food but trying to eliminate all of them is hard. My tummy needs help lol

Hey, Was wondering if anyone has had any luck with florastor probiotics. They are a yeast based probiotic which iim not familiar with. I noticed alot of other probiotics have lactose and milk in them and im allergic to milk protiens so was thinking this may be a good alternative. Anyone tried it for their "ibs d" and had any luck? Or mind sharing ur results? Or have any probiotics u recommend? I hate takiing immodium and still not being able to tolerate a simple piece of toast...ugh, Thanks =)

I agree that a diagnosis would probaly not benefit me. However if i can find clues on my pots/ncs and other issues causes, thats really my only motivation and goal. I just wanna be well again. Atleast functional, and i feel there so much going on sometimes there has to be something that has been missed to connect all the dots. I dont think this especially will lend to that "cure" but its interesting how it could possiably be connected. I find the vaccinatioon connection quite interesting.

Very interesting. Ill have to check that author out. I def have sensory issues. Just chalked up to being quirky lol i literally have fits of uncontrolable movements and ticks and clenching if i touch cotton with my nails or fingertips as an example. Its oddly painful and my mom has always giggled at me for it, threatened to make me fold socks if i didnt clean my room,but its yucky how the the brain can confuse something so harmless. I have distracted myself from things like noise and stimuli ei. Conversation even with a close relative with a pain distraction, biting my cheeks when i was little till i needed stitches, ugh i still do this. Not that i may be autistic but just how i must have done these things to distract for whatever reason, even an overactive nervous system, from overstimulation. I cannot imagine how difficult for those with severe autism this must be. There is just so much we have to learn.

Thx guys for all the info. Its all very interesting. And here is the infamous mast cells again...lol i cant escape them in any theory i conjure up

I do have lots of brain fog and general day to day forgetfulness but it returns when im not as symptomatic, however my long term is gone too. Like things never happened. Someone can show me a picture of me and i still wont remember the event. Any of u with long term memory issues had autonaumic dysfunction since childhood?

Im the same as u angela...long time smoker...ive quit a few times and am trying to wean back now but its hard when everyone around u smokes. My first cigg in the am makes me black out a bit..feels like it drops my bp or maybe oxygen deprivation for amoment..yyet the rest of the day it helps calm me down. Im asthmatic from allergies so i know i have to quit but its a powerful addiction. I dont think it helps my hypotensive states at all which it really should since its a vasoconstrictor but im a walking contradiction anyways so? I have noticed afew times i think its triggered runs of pvcs. Another reason to quit.

I have huge issues with memory, not short term but long term. I dont remember huge chunks of time. Years of my life are just erased. I hear stories from friends "remember the time we did this ? Etc..." Or just basically my whole child hood and even twenties is spotty. I have very few memories. Does anyone else have this problem? Im only 31 and its really concerning hearing about things that seem completely fictional to me. My short term however is spot on and overly meticulous. Just curious is anyone has issue with this..thx =)

I would love to find an article in reference to this. I think i may have been born either with dysautonomia or developed shortly after. Ive recently pulled my medical records dating back to 1983 (i was 2 yo) when my symptoms were already pretty alarming. It started with gastro symptoms, then shhortly after, cardiac,bp and syncope along with migranes by the age of 5. By age 8 it appears i had already 5 failed TTT"s and was entered into a study. I have been searching for a cause feverishly since it overcame me last year again but I am beginning to think this is something I may never overcome completely after reading through my records. I must have been an unpleasant toddler to be around...my poor mother ....lol =/ i would to find some gene or answer to what may have predisposed me since my mother has similiar, yet less severe symptoms.

Thats for the info. I never seriously considered seizures but have speculated a little that these episodes feel seizure like in nature. My teeth will clench shut and get very cold. In my case, i do have visual snow or blackening, fuzzy vision but it is no worse than when im not having one of these episodes, as well, my pupil dysfunction seems to be unrelated specifically to these events since it is a constant abnormality for me. So, they may be both related to auto dysfunction but i believe both are symptoms and not directly related to one another for myself.

Hey Rama, I have had about 6 episodes of full tremors similair, lasting about 1-5 hours decreasing in severity from the start of the episodes to the end. Not sure why? I have minor tremors now when I get brady or too tachy but these episodes were different. Much more powerful. I also have severe pupillary dysfunction. I first noticed it last june. My eyes do not constrict fully and "bounce" between partially contricted/partially dialated rapidly. This causes an array of issues with my vision. Its very noticable and get funny looks if someones up close talking to me. I believe it was all sudden onset, however i've had autonaumic dysfunction since a child so its possiable that I may not remember these symptoms as a child and they were laying "dormant" for several years and just waiting for the right circumstances to be unleashed again.....ugh My intuition says its a new symptom though and things may be evolving, just not sure into what. =/

Hi ...my grandmother had addisons, hypotension and my mom has mvp, tachy, and hypotension but no auto testing and my kids ='( are now having symptoms...minor some days but mostly cardiac symptoms and dizzy spells. I appear to be the one most affected for the longest time, since birth, and i hope my kids are spared and grow out of it ...=( ugh

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)

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

Just wanted to bump this.....lemons this was incredibaly hopeful And inspiring to read...thought some other newbies like me woud enjoy it as well. Thank u =)

Hi guys, After reading Bebe's post on trace blood in urine post, it prompted me to look through some of my labs from a while back. I'm not sure what some of them are and was wondering if anyone could interept them for me. I tryed google but have some confusion still lol first one is timed VMA 24 hr urine VMA 3.2 2300 mls. JUst wondering what this was looking for and if it was normal? second question is; I had a u/a that stated; bilirubin small-trace positive with intact trace blood occult isn't bilirubin in the urine bad? could this been from a uti?? my liver panel was normal hope someone can educate me a little...lol Thank u =)

I considered parasitic inf in the beginning because of the severe gi issues and weight loss, but all tests were clean, thank goodness...ewwwwwwwww.....but in a way Id rather have a parasite than pots ...=( ( not sure if I trust the tests though they are so flawed)

thought Id bump this...wish I hadnt made a redundant thread before seeing this..lol so this seems to be common and is why I feel so crumby. One thing with me is narrow pp stays narrow even lying down, could this red flag the hypovelemia issue?? I worry that my hearts not functioning properly because of structure but I hope its just lack of supply. Has anyone found anything that helps widen it?

laying down 65 ish and I have no clue standing...lol I never payed attention pre pots and after its never a "good day" standing but I woud geuss around 70-80 <in my dreams>

Alt, I havent been sick that long, atleast not sick as I am now. I got sick last June and really ill in october. BUT I have done everything wrong, Ive stayed in bed, Ive been inconsistant with meds and fussy about trying new ones. I cant do a bblocker because of other issues and again I have been passive because of fear. Ive had autonaumic dysfunction since I was a toddler and I have lived a great life. I think a combo of things just finnally did me in.( I was a smoker, I worked with chemicals, I ate horrifically, I was an insomniac and I moved right before getting sick) And ssri was wonderful when I was on it!! It really really helped me!!! It took about two months to really see results. I just had a wierd reaction to it that is totally unrelated to Pots I think. So dont give up. Im sorry these posts made u sad, they are more of an outlet for me. Get the negative out so I have nothing but positive left in me. Hang in there, Ive found your posts to be inspiring and very helpful and am glad ur here with us but will be even happier when u dont need us anymore..take care =))

There is a thread on here somewhere about excessive yawning, I wonder if when we yawn excessively its our pns trying to calm us down. Ive been up since 2 am so Im yawning just thinking about it lol

sadly, I cant take benzos they crash me severely....=(( so Im not the only one though....hmmm makes me feel a slight bit better...sorta lol maybe someone can tell us why?

Hi everyone, I have been salt loading because my bp is dragging bottom again. It keeps wanting to sit at 74/60ish and I feel like rubbish cause my hr is sitting at like 155 standing without exertion. So after 3 days salting ridiculously, its still sitting around the same, sometimes higher like 94/80...which looks better but why is the systolic so low campared to diastolic. I feel just as crumby and cant figure out why the two numbers are settling farther apart even with rising. Any ideas what causes this. I get narrow pp alot but it comes and goes, now its seems to be here to stay and Im worried its because of my heart functionting poorly. ( Had a stress test and echo in oct due to high cpk mbs, but things have gonna a little wonky with arythmias since) Ive been feeling a lot worse lately and even some old symptoms that eased up have come back, ie; chest pressure, twitching in my chest, nausea and OMG the anxiety!!! lol anyways thx for any wisdom u could spare...=) ps.. could lack of exercise cause low syst. high dias.?

Bebe, I had to make sure that last post was yours, it sounded like it could have come straight from my mouth lol The emotional battle of this illness is become so my much more than I could have expected. ANd please, please feel free to rant anytime. Its so healthy to let this stuff out and it lets us know we r not alone. {{{hugs}}}