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Everything posted by Angela

  1. if you are on medications that causes dry mouth which can be a cause.
  2. 34. been sick since 30 with the more scary flares but had symptoms in my 20's that were short lasting and mild
  3. klonopin works wonders for me for the adrenal surges. It doesn't make me drowsy at all. welbutrin, on the other hand screwed me up royally when I was on a very low dose
  4. i would agree with the sleep issue being a factor or possibly a trigger. I started sleepwalking after getting pots and my pots kicked in hardcore not during pregnancy or right after but actually when my son was a baby and not sleeping thru the night plus working full time, I got horrible sleep.
  5. this is why yoga is awesome....it will do wonders for your posture. I recommend vinyasa and concentrate more on your posture and breathing than keeping up with the moves. Just be careful and listen to your body as before I was dx'd with pots I almost passed out in downward dog....I think the blood to my brain turned everything black.
  6. you can buy yoga dvd's and do at home at your leisure. I recommend vinyassa . I like Christine McGee....she says "nice"a lot. but she is good at telling you when to breathe
  7. I would venture to think that asthma attacks and air hunger are part of dysautonomia. I never had allergies until pots but my 3 yr old for sure has allergies...freaks me the f out. but wouldn't do anything to discomfort yourself....my hr was 150 today but some days it is only 100 standing; my doc is not figuring this out albeit\ maybe because I refuse to try any med out there. where do you live? I heard there is a good cardio in Cleveland ohio dr. Muhammad oli who treats pots patients. I have also read some of his political articles, although not republican or etc. he seems very intelligent and kind.
  8. I have had this problem for the last week. I don't know why....nothing changed diet wise and I take antihistamines daily. I think this is just part of changing weather and dysautonomia.
  9. i was dx'd with ptsd too and was told that is what triggered my pots and also was abused as a child. I also suffered whiplash not sure how that has to do with it but my pots kicked in within 1 month later I would say. my vitamin b levels were off the roof according to my doctor, he said not to take vitamin b supplements anymore as too high vitamin b levels are now being linked to cause cancer.
  10. I've never fainted but it causes me to collapse
  11. my bp swings too, tends to be high dialostic during the day even sitting but drops at night and at some points during the day too at a point which is what is considered normal. my neuro rx'd me this almost a year ago, never filled the prescription. somehow i just don't feel its right for me? idkw i have that feeling except maybe that my tachy is not that bad, never goes above 130 140 that i clock anymore. i don't take it standing anymore either tho. if u decide to try, let me know how it goes! interesting tho that Afrin is rx'ing it.
  12. thank you, that was interesting. also, 23&me can possibly tell you what you are intolerant of, for example it showed the blood thinner walfarin, i need to warn my dr.s about as i am "not tolerant". (in case I need surgury) so happy you are so strong and pulled thru. Wow, all cuz of yoga? do you have eds may I ask? I plan on starting yoga again and i was wondering how you got herniated disc? I am betting overexertion? but if not, than what?
  13. yeah good bump. not much meds after 2+ yrs help so far and so i vote with the worse. living a normal life is nothing the quality as what well people can do. i mean, if you HAVE to take meds, they should def help. Right? like make you able to function, work, raise a family. I work, i cannot go thru drug trial after trial to make me sicker. not my neuro's fault by far, just i wish more would be invested into research.
  14. yeah, no my tremors were well before on meds of anysort. I was not dx'd
  15. well it is a seizure med at a much a higher dose, but assume you already tested for that. and NO, my pots was not from decondintioning and all my heart tests showed normal, both from regular card year half ago. and ep.
  16. http://radiopaedia.org/articles/developmental-venous-anomaly not noted on my 1rst mri when I was getting tested for ms 3 years ago,,,,,,,,,,,,but one year later this. no carn. mass. think possibly ties into the whole ccsvi theory.
  17. yeah, sound similar, when i came down with pots bad I was doing vinyasa/power yoga and the real kicker was after shower, trying to blow dry my hair, hence lifting up my arms. idk, cuz i could somewhat tolerate bridges tho, hands crossed underneath? it was a harder move for me as far as yoga went, but blowdrying my hair much worse go figure! btw, did you mean clonazepam i think? that controlled my total body shaking completely if so. I only take 1mg. if that is what he was on, how many mgs?
  18. http://www.drjohnm.org/the-mysterious-athletic-heart/ maybe we were overconditioned and now on too many meds. lol. this was faintly insteresting I thought
  19. yeah, i guess right now other than high bp smoking is the least of my worries. I know that sounds terrible. thanks tho!
  20. beta blockers don't really help pots from what i've read.
  21. wow, that's amazing. am depressed and excited at the same time. ty for sharing.
  22. aren't you techincally catagorized as a HP? maybe I recall wrong!
  23. ugh. i hate my laptop. this is the second post i have had to retype. i always google meds and side effects, i'm sure you do too, but if you feel strongly against something definitely follow your instincts.
  24. i just wrote a longish message and somehow it got messed up by my laptop. anyway, have you tried taking an h1 and an h2 AT THE SAME TIME every a.m. and p.m. 10 mg. of each is what i take every morning and night. i def think it helps me....the tingling sensation in my feet and hands is gone now. my neuro said mast cell is very hard to catch. cmy hr is lower, not sure if it is because of this tho. bp still messed up:{
  25. so wikapedia reports if you are responding to antihistamines it probably isn't a factor...i skimmed thru this as it is quite interesting, i worked in a restaraunt 10 years ago and it was weird, both patrons and employees were exhibiting the symptoms described as well as rashes on face, this is when i first experienced presymp. seeing stars and vision issues, didn't last long, just a month or so, normal blood workup showed nothing. also developed a rash on my torso at that time.
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