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Everything posted by Angela
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were you on meds during the testing? your dr. has the same theory as mine i think, he calls my condition idiopathic pots. therefore my pots is an idiot. on that note, i will figure out how to overcome that bastard since i am not an idiot!
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Chronic Headache, Sensory Overload - Dys Or Cfs Issue?
Angela replied to Bayly's topic in Dysautonomia Discussion
but, i guess i shouldn't have posted on this thread since i don't have migraines! (unless silent perhaps, idk ) sorry. -
"thoughts On Future Research Needs"(For Pots)
Angela replied to sue1234's topic in Dysautonomia Discussion
and i would add genes i guess. seems to be a genetic sort, if not pots than something else autoimmune in fam. -
Chronic Headache, Sensory Overload - Dys Or Cfs Issue?
Angela replied to Bayly's topic in Dysautonomia Discussion
labs state i am mag deficient even while taking mag supps, quit taking it and haven't noticed a difference in 2 months.maybe that's just me and my probs tho. -
Starting On Zoloft (Setraline) Tomorrow....
Angela replied to SeattleRain's topic in Dysautonomia Discussion
so i think zoloft is an ssri, good for hyperpots I am told? but I wonder if it is a buildup of klonopin that is kicking in. that is actually what stopped my death feeling surges...every day they lessened. -
"thoughts On Future Research Needs"(For Pots)
Angela replied to sue1234's topic in Dysautonomia Discussion
developmental at what age i wonder? and spontaneous improvement doesn't mean that you won't have flares, right? -
i have a hunch that all hyperpots patients do, i mean, why would mayo be rxing if not so.
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Estrogen, Progesterone, And Aldosterone
Angela replied to Lemons2lemonade's topic in Dysautonomia Discussion
um, so indomethacin is anti inflammatory. prostaglandin F2 stops production of progesterone??? are you saying that pots and anti-inflam's conflict? that mcad isn't related? I don't get it -
Mast-Cell Activation Disorders Blood Test ? Please Help
Angela replied to Achilles2323's topic in Dysautonomia Discussion
yeah, that's exactly what my neuro said about being hard to test. but he still gave me a scrip for gastrocrom. I am trialing wellbutrin right now so I wont try for 2 months but at least he gets that if h1's and 2's are doing something profitable he is not against prescribing a mast cell stabilizer. although, i am on a mast cell granulator (generic klonopin) so don't know how that will fare? -
that's crazy that she said that. even leukemia patients, there dr.'s tell them that hope and perseverance and laughter/humor is sooo helpful in conquering a disease such as that. ignore those words, just get wait for your test results to RULE IT OUT!
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Bella, which meds are you talking about? I thought Issie was talking about herbs. from what I understand wellbutrin is neither an SSRI or SNRI I read somewhere it was classified as an NDRI, a a norepinephrine and dopamine reuptake inhibitor
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Hey Anoj, day 3 and I feel much better. The tired/wired feeling was gone the second day and don't have it today as well (yay) I am a little more irritable today tho, not sure if that is the med or just my mood today.
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update, I hardly got sleep last night, was late to work but no jitters/anxiety today. Maybe that's cause I am tired LOL!
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shoot I wish we had a couch!. I get in trouble if I am late. and I don't drive so it's not usually my fault unless I am having a really bad morning. Me too Rama. Some seem genuinly concerned, others I think they just don't like seeing someone sick or head down on the desk.
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if you have insurance, try not to lose your job. that's my best thought for now at least. you seem young so the chances of you getting disability are slim from what i gather.
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r u supposed to stay on that diet long term?
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um, sorry, didn't think to look at your quite spelled out history. oh well maybe tomorrow is better! thx Chaos.
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shoot, day one in and major side effects i think. not sure about short relief either, more maintenance yeah? Chaos, and are you on generic or actual wellbutrin? I went on so many forums too. *****, they say from what i gather that not having extended release causes huge bouts of anxiety for some. i am primarily trying to quit smoking but was dreaming it would help my pots after looking at old old forums and faces that have been on this and have dissapeared on dinet, i was thinking for the reason they found a cure, i figured cuz they got better. how exactly does this help you with hpots? other than the dopamine factor. does it have to do with NET? why do I feel so "strung out"?????????? Chaos, I think I already know but am too worn out to figure out if you are hyper or hypo but I think my memory recalls hyper but don't experience high bp necessarily? i hope i don't have insomnia/sleepwalk tonight and tomorrow is better. well, i probably rambled long enuf...sure i'll be alive tomorrow like the rest of us:)
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aljames, i don't even have words of advise for you except believe in yourself, your strength. sounds like you got handed a bad deal this round so to speak but sounds like you must have something better coming if you are true to yourself and can let all that go? don't know alot about cancer, just that you need to stay positive which is hard with pots and every other disorder sometimes. your husband must have suk'd for awhile anyway.... right? so hopefully his absence will help in some aspect ( I do understand insurance part tho) i can't even start to understand all you go thru. hope you have a sweet night:) and btw, 5 loyal friends is all anyone needs, i tend to think 3 will do the trick.
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so i started this today, 150 mg 24 hr release to maybe help my pots but i really want to quit smoking. i feel like horrible, like super amp'd wired but can't get myself to do anything, i feel frozen. my neuro started me on the low dose (yes, i proposed the whole thing in the first place due to high bp/smoking is related) but wondering if this is normal. i have the normal side effects he mentioned, not being hungry, a little more dizzy, but when i looked it up it said something about bp going high which is not what i want since i am hyperpots plus causing tachy, albeit he is consistently worried about my bp more than tachy. i know it's the first day, so give it a day or 2 more but kinda freaked out. i've looked it up and saw that several pots patients take it, well at least wellbutrine and they have mostly "disappeared" from the forum. is there anyone out there right now who takes it? I know it is on dr. Grubb's list of meds for Hpots. i dont get it since i also take clozenapam which helps the anxiety effect of POTS for AD surges. don't know how outdated that study was by Grubb. Do know that i am feel like I am on speed tho. my vitals are good, last i tested, but then again i ran out of triple A batteries so who knows.
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Do You Feel Better Or Worse While Exercising?
Angela replied to ramakentesh's topic in Dysautonomia Discussion
yeah, i feel like crappolla even walking but if I do vinyasa yoga i can get dizzy in certain poses but I think because of the focus of breath that saves me. i still feel it the next day but at least I know my body is responding as far as conditioning (FYI HYPERPOTS IDIOPATHIC, NO EDS so far), I am against running, although i have dreams about needing to run, i don't know why for over a year now, i think it is havoc on body long term (knee replacements etc i can't even walk very far etc), yes i used to run long distance in high school and was awesome but it created some sort of anxiety,( idk why, unless i felt compelled that i had to win every run) but i think a major component of the benefits of exercise of any type is BREATH. so don't push yourself too much, just breathe. -
i have found so far that walking 20 minutes at best helps, although it may only be beneficial for psychological reasons i.e. that i can say i did it it, but when I do, it seems that it generally makes me super tired, certainly not noticed benefits the next day. i think it is helpful to stay "conditioned" but I don't believe in the whole levine/exercise/cardiac theory luv yoga, still get tired but in a better way
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so i saw my neuro and once again declined clono. starting wellbutrine low dose and we will see how it fares. one thing I am positive about is the dopamine factor, but i am a little sketch with on the serotonin part.
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Estrogen, Progesterone, And Aldosterone
Angela replied to Lemons2lemonade's topic in Dysautonomia Discussion
I get more potsy the week before my cycle as well as during.