Angela

i have done two 24 hr urine tests which showed nothing, i think they were trying to rule out pheo tho and also a tryptase (sp?) blood draw I cant remember right now what that was for. My neuro told me that mcad is super hard to catch thru tests so we didn't pursue, I just started h1's and h2's on my own and found it helped a lot of my symptoms. I don't really have flushing symptoms, although heavy perfumes girls at my office wear started bothering me this year and other than my clavical/upper chest/kneck has remained pink in color for over a year now, I don't really have any other indications of mcad but if I miss a dose of my h1 and h2's i feel worse, more tinnitus and tingling in extremeties...even tachy/adrenal surges are worse. LOL, I wish my chest grew, still a b:)

what a complete ****

http://www.hellenicjcardiol.com/archive/full_text/2004/3/2004_3_132.pdf

low 90's during the day, sitting at my desk at work. but I am not on beta blockers. i just read a study today that was actually from 2004: indicated beta blockers do nothing for us pots patients in the long run. I am uncomfortable when my bp is lower or higher than normal, or my hr is over 115 sitting without activity.

Hey AZ Girl, I actually didn't know Saperstein did skin biopsies, he never mentioned it. He had the lady who works there do the autonomic testing on me, the valvasa manuever, sweat test, and one other test that I can't recall at this time. All came back normal but I wasn't as symptomatic that day as some. I know I have a hard time trying to blow up a balloon so the valvasa coming back normal was a little surprising for me. He checked my blood flow and a couple other things on this weird computer thing he had...pretty high tech I thought. He also checked a little into EDS, noticed I have some hypermobile joints but others are the opposite (I can't straighten out my elbows:)) so we kinda let that notion go. I havn't been back to see him for several months as I am managing my symptoms at this point without adding on medication. He is the 3rd neuro I have been to and my favorite so far and I am impressed with their setup. I have also been to an EP and cardiologist of course but stopped going to them as it was a waste of money to me and the EP was not very communicative as far as I asked him to contact Saperstein before putting me on any meds and he never did. I was always in his waiting room (the EP) for over an hour for a 10 minute consult. I know Dr. Fry has had some discussions with PNA (not sure what docs specifically or what their reactions were). But he has been invited to do lectures all over the country for different types of doctors, addressing the diet and how it has shown to help significantly with autoimmune and chronic illnesses. My move was over a year ago, I have been in Phoenix for 10 years now but was renting, I bought my first house last November. I think the stress involved with that was what sent me into my worst pots flare I have had so far.....but I am slowly feeling better. Also think the antihistamines helped, along with klonopin for my adrenal surges. My previous pots flares I was undiagnosed and I just worked my way out of them without meds.

Saperstein is my neuro:) I like him a lot so far. I brought him info on dr. driscoll but he read it and wasn't into dr. driscoll theory at all....never had skin biopsy but he did autonomic testing on me which didn't show anything irregular. still dx'd me with hyperpots based on vitals and symtoms he witnessed. Overall, I am glad that I got his second opinion of my dx other than the ep i went to who called me "pots girl".

yet there are different types of parasites, some are single cell and don't appear as worms or detected in stool.

derekliz, I am wondering why they have you on klonopin if you do not have adrenal surges? or are you just asking me what mine feel like when I do? If so, it's just basically what I would describe as a panic attack, a feeling of terror, doom, something's wrong but IDK what, shortness of breath, disorientation. i'm not sure it my bp or heart rate has much to do with the surges, they usually now only happen when I am trying to drive so I couldn't say exactly what is affecting my vitals, the noise distortion and confusion, or just my bp/hr going crazy affecting my vision and hearing, but I know klonopin helps me the most in the a.m. when both are up and I experiencing all the symptoms of first standing up after being flat for so long . I notice at night I feel most uncomfortable if I have unexplained tachy even when lying down-since recently when that happens my bp drops but not my hr and i don't know why. So that's when I take my occassional .5 at night- but that's not so often. when I used to wake up in early a.m. between 2 and 4 am with unexplained feelings of terror and rapid hr, I so wish I had klonopin then! but that symptom hasn't really happened since I've been on klonopin. Not sure if it's cause the klonopin is already in my system and has a long half life or just my pots ever changing? But, klonopin works so well for me and I won't try changing unless I start experiencing negative side effects or it stops working like it does....maybe you need to try out a different benzo or ssri? Also, I am on the generic of klonopin, not sure if that makes a difference.

i've been on klonopin 4 over a year, and have not experienced that. whether I take .5 or 2 mg it doesn't seem to affect my sleepiness although other's on this forum seem to have a different experience. I would go very slow, maybe shaving off 1/4 of what you are currently taking at a time, wait 2 weeks and then see, since it seems to have such an effect on you......ask your doc? Also, unlike most I rarely take it at bedtime, usually in the a.m. when I am tachy with big bp flux's. But, like I said, it doesn't make me sleepy at all, just makes me relaxed and able to focus on the task at hand by calming my adrenal rushes.

check out issie's thread, new doctors, new ideas.......

yep, he hypthosizes that the protozoa causes issues with blood flow to the brain and then back down to the heart, which causes many of our issues with heart rate, blood pressure and dizziness, air hunger etc. he also definitely thinks a major part is the ccsvi...the vein issues of the kneck out of wack so then i felt comfortable enough mentioning the dva in my left temporal lobe...same area where my eeg noted brain slowing first dx'd as siezure activity, and I noticed, although he didn't comment this way or that, he wrote that down as if he was pondering something instead of disregarding like other docs I have seen in the past. hopefully this didn't post 2x, when I tried to first post it said "saving post"

Hi, just wanted to jump in on this subject, I got my tests results back yesterday and I am positive for protomyxzoa rheumatica as well. It appears, from the picture my white blood cells are trying to attack the protozoa so that's good. Doctor Fry has prescribed me minocycline, which is a very gentle antibiotic, used to treat many for acne but he has had success treating the protozoa with this along with the very low fat vegan diet. His first indication to test me for protomyxzoa rheumatica was due to Sonora Q lab autoimmune testing showed inflamation. He believes that most autoimmune and chronic illnesses are caused because of this type of bug. Ann F. Corson is another doctor who treats the protomyxzoa rheumatica. Below is a link and it actually shows pictures of what the protozoa/biofilm can look like. http://protomyxzoa.org/images/Protomyxzoa_rheumatica.pdf

i agree, especially since you are hyper if I understand correctly, it may be long term illness vs. other pots; i think you will have really good days to combat the bad, especially once your hormones balance out more u will c much improvement:) not that you aren't going thru **** right now.....it will get better, promise.

i was first dx'd with siezures before pots, due to abnormal slowing on my eeg left temp. lobe, if you do a search on siezures you may find some info. I was on keppra for 3 months too, until my dx with pots. The doctor who reevaluated my eeg/suspected siezures believes the slowing siezure activity = lack of oxygen to brain.

hey mamma, maybe this is not the right one for you....listen to your body and mind and tell your doctor. you, in fact, are your own best doctor as you know what you r going thru, they don't know exactly how u r feeling, reacting, etc. bb's did the same to me. there are alternatives. not just benzo's u have to find what is right for u. some pots people only do natural supplements! who knows

altruism, I also think this could be thyroid related or postpardum dep. things get better, just hold on tight. I don't know if you have a supportive partner but listen to your child breath, most beautiful thing I have ever heard...other than rain and thunder:). luv ya....hope you are doing better. you know u can pm me anytime.

yay dani!!!! so incredibly happy for you, do you have any advise for K&J'smom?

yeah, I tried to describe that sensation in a previous post and I wasn't on medication when it first happened....like a roaring vibrating pulsating pounding band of pressure around my head above my ears, and sometimes this crunching sound of paper ripping or an ocean tide type sound radiating in my head and ears. Very hard to explain the sensation. It happened to me again last week where I also later experianced tachycardia that didn't go away after laying down 3 hrs even tho my bp dropped. I do know I have had abnormal eeg's tho and was suspected to have simple complex siezures for awhile before pots dx.

from what i understand hyper have a worse dx as far as recovery, but it s possible. plus, with hyper especially i think there are more components so the sooner youn can get to the root cause the better, that being said, anything is possible!!!!! from my experience and reading a lot we go thru good periods g00d & bad..not talking aunt flow here, but you will have better times and worser,,,,so wait and it will happen 4 u, i am sure you will be off this forum soon:)

klonopin is also a seizure med and rx'd 30 mg per day!

I don't get spaced out or sleepy at all - there have been very few occassions when I have had to take 2 mg and I do it over the course of day/night if my symptoms don't get better 1/2 pill at a time. Typically, I just take 1/2 in the a.m. when I am supertachy and feel my bp fluxing and getting myself and son ready for the day. if I have to drive farther than 10 minutes and there is a lot of traffic I know to take another 1/2, that's the only way I will make it to my destination withought having to constantly pull over! an adrenal rush for me is what I assume a panic attack feels like, I get very shaky, cannot form thoughts/words, extreme sense of doom/fear/almost like hysteria trapped inside me. I don't get it just upon standing, most worse occassions are when driving and I have woken up in the middle of the night, while laying flat in the middle of a rush.

my md thought due to my symptoms I was having simple complex siezures, knew I was having issues with adrenaline when I went for my visit. he rx'd me with klonopin generic .5 mg then as it has a softer set in yet longer 1/2 life then other benzos such as xanax, which the first md dx'd when he thought I was having anxiety due to vertigo. since then, about a year and a 1/2, on bad days I will take up to 2 mg half at a time but on good days, only .5 in the a.m. when I am super tachy. neither the epc nor my neuro think that is weird or wrong, i guess they get it. i always start with a small dose but if i am having major adrenal issues i will taper up, a quarter or 1/2 at a time depending on how severe my symptoms are. and even if i have to take 2 mg one day (which i do rarely) if I only take 1/2 mg the next I don't feel anxiety or addiction issues.

ache, from what I have read ever Guiliana is like american "julia" yet it's italian and I think somehow tied to ""unsual" or "exotic". hope that what i have read is correct:) has nothing to do with your topic tho....lol

the head noise sensation came during the day, when I was up and trying to stay active, although I didn't feel so horrible or fatigued otherwise...it wasn't when laying down with the hr still going. last year with my major pots flare I didn't get that sensation....(I did in 2011 early spring but didn't know I had pots, and about 5 yrs before same sensation, more like a ripping noise inside my head) but last night with the high heart rate not compensated by laying down came later, around 7:00 p.m. when I was trying to relax, prep for work in the a.m. and get my son asleep. I was watching a game show on tv, nothing to absurd and had eaten good dinner and had plenty of fluid yesterday... i couldn't sleep tho cause I felt my pulse going but knew something (bp) wasn't compensating as usual). I don't think my neuro would have an explanation. I can't really think of why to go on a bb when my bp drops drastically suppine, I think that would cause me more anxiety at best, (although dx'd hyperpots) so I am just confused. already had my blood volume tested, that came back normal. same as catecholamines which I have had tested 2 x and came back normal. same as sweat test, although last night I woke up drenched...icky.

i won't say too much other than i wouldn't mention dr. fry to dr. d. i'll pm you tho