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Angela

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Everything posted by Angela

  1. that's what i was told by a m.clinic dr. I don't buy it or don't discredit it completely. I didn't have a perfect childhood (who does) but for those who have gone thru testing or not of causes to rule out idiopathic pots, do you think post traumatic stress disorder could be a factor. seems not likely to me, but would just like input for interest sake.
  2. bp meds are hard to control. me, personally, that's why I am not on them. for example, when I am resting my bp is low, but standing very high. I never wanted to get in the mess of trying to figure out what was doing what and what med I had to take to compensate. my first bb caused me havoc. That said, I know many who go to a pots specialist and his words were apparently, if your bp is 150/100 for 1 week straight, go to the er. you have lived this long, without even having a dx (i think for her it was at least 10 yrs) so you are not dying. i don't know what to take out of that tho. my neuro wants me on some type of bp med, but i just don't feel it.
  3. my goals are to function enuf for work, take loving care of my son, and be happy, need to start yoga again (i've slacked for a minute). anyway, i think that your diary is going to be so helpful, may even determine food allergies for you. for me, i am starting to believe that my pots flares are stress related on top of something else, which i thought was bs in the beginning. idk, tho. i know there is another element mixed in. waiting for 23&me, if my brainfog can't figure it out maybe someone else's good day will!
  4. my aunt said, and she is a doctor, but gut flora should go thru the vagina canal. I don't think drugs that stop your period are good for you, i mean, we were designed to be the way we are so if that part is still working it's trying to do it's job, ya know?
  5. and again i say, underlying conditions, vaccines cause pots, (related??? in a sense of something we don't yet get?) and thus maybe there is somewhat of an underlying cause for you.
  6. just a thought. http://thestir.cafemom.com/toddler/149858/vaccine_court_awards_millions_to
  7. yeah, my neuro gave me a cd called "Coherence" it's pretty easy. haven't used it for awhile finding time to, cause i work 40 hrs a week and have a 3 yr old. but does lower blood pressure and is calming for sure.
  8. i have a day or two now that symptoms go and I feel almost normal, times where I don't notice the effects so much but still am not my prior self, and then really bad flares that get longer each time.
  9. yeah, maybe we have to trick our minds a little. I'm not really into self help books. I was always pretty positive before pots. I think I still am, considering how I feel but it helps having a son and reminding myself of all I have accomplished. I agree with Mom2G, breathe therapy is important. has anyone googled email apnea?
  10. cardio or weights or yoga? I guess what you define as exercise. I feel bad even just going walking, but I can tolerate vinyasa borderline ashtanga yoga. I get dizzy in some poses but can pull thru. pilates is okay too since it is mostly mat exercise, not a lot of standing involved. both yoga and pilates focus on core a bunch which is good, and promote blood flow.
  11. me too Issie, I'll take my chances and wish as a mommy that I could have had more authority re: that with my son. I think it's a pharmo money scam when you look at the rates of what US forces us to vaccinate our children compared to other countries. no offense america, i still love you, just not corruption:)
  12. but vaccines can cause pots for sure http://drblitshteyn.com/articles/Gardasil_and_POTS.pdfhttp://drblitshteyn.com/articles/Gardasil_and_POTS.pdf
  13. i used to take ephedrine too, like over 11 years ago because I am so weight conscious and it gave me energy. but it also gave me tachycardia like crazy and other weird symptoms. Yeah, I love the energy it gives since you are not hungry, you are not eating so you need energy from somewhere, but overall I kinda knew what I was going thru wasnt good for my health. I am 5'9" and weighed 110. yeah, its nice to be size zero but sometimes I wonder what the **** that did to my body in whole. it did make me super energized, in a jittery bad kinda way. but maybe in small doses it may have some value as far as brain cog? my sis is on aderol which i've read is like basically legal meth, the dr.'s in indiana are pushing it on several people I know who don't have pots but other issues. I believe drug co's promote things to dr's and they get some kinda perk for convincing patients to try it. I took aderol once and started hallucinating basically it was horrible. I hate aderol as it pushed my sis into drinking way too much (i think there was other influences too but no proof) but she ended up loosing her kids for awhile. furthers my hatred for that "med". it is supposed to treat A.D.D. and I think some pots people take it so please do not be offended....just hate what it did for my sister and my experience with it wasn't happy (that was prepots), as well as another friend from Indiana who is very intelligent, masters degree but no pots, (i think crazy allergy issues tho) but her dr. was basically pushing it on her (she'd been rx'd and taking it for a while ) and she kept saying no. She is doing so much better now...just moved to florida and her flushing/allergies have gone away. and she has been off aderol for a year, she says.
  14. yeah, i think i had that done in my ans testing and it didn't bother me too much so ruled out neuropathic pots
  15. maybe the reason they don't have the science to back it up is because of the vaccine companies having so much control.
  16. well on second thought I couldn't say certainly for sure cause I do have some of the symptoms described. but the article describes it as this: " Breathing causes the vocal cords to open, allowing air to flow through the windpipe (trachea) and into the lungs. With VCD, the vocal cords close together, or constrict, during inhalation or exhalation. This leaves only a small opening for air to flow through the windpipe and causes asthma-like symptoms." I just feel like my mind is not telling me how to breathe so I forget how, it's not like I am wheezing or gasping for air like I invision asthma patients do (on tv, lol) I wonder if that's what people with asthma feel like? I couldn't say since I don't know anyone. It would be interesting to compare descriptions of how it feels.
  17. for me, very certainly not vocal chord disfunk unfortunately. but funny, some days i can sing, some days i can't. i've been like that since i've been young, age 6 they wanted me to sing when my adopted parents found me playing the piano without lessons and singing; but i have figured out that i am inconsistent, some days I am so on key and can let it out, sounds good somedays not. i was in a band when i was 18 as vocal/keyboard and somedays I sounded awesome vocally the others, it was like i forgot how to sing, others i couldn't play the piano like i felt. it comes and goes.... like pop stars right? (sarcism) but the forgetting how to breathe is entirely dif.sensation. btw, no means do i claim to have vocal skill such as an opera singer! i'm more like mazzy star as far as vocals.
  18. yeah, he was a kinda old school neuro, mainly focused on Parkinson, said he didn't treat pots when he referred me to a cardio who dx'd me.
  19. what? oh, i see it is categorized as am azapirone but yet did nothing for me.i also see that it doesn't require tapering off of. my neuro had me taper a little tho.
  20. got my son the nabi II tablet for christmas, it is priceless age approx 2 some earlier some later depending on the child I guess and are perfect for bad days when they want interaction with a human - my son loves showing me all the stuff I download and how he knows how to play, puzzles, numbers, words, it even reads stories if you are dizzy or short of breath and that's not an app you have to buy. most apps are free that I have (this is not an advertisement!) When I feel well we play ninja, nerf sword fight dance or go for short walks.
  21. so do all ssri's cause weight gain? why is that? i know many who say florenisef causes weight gain too. just saying, i don't run marathons so dont want to have issues down the road from an ssri due to weight gain. i know you are supposed to "trial" and if you have to get off you have to wean off like benzos. i was put on a snri buspar before dx'd and had no probs weaning off.
  22. camp out on the couch, hold my son if he will sit still ha ha....
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