Angela

I was going thru old posts to see if I could find any info on this but was taking awhile so thought I'd start new post. I have been more tachy for the past week and a half and contributed it to aunt flow last week and extra stress. no change in my meds, just klonopin as needed and h1's and h2's. Last night, my hr wouldn't go below 120 - 130 even after laying down flat for 3 hours. Yet, my usually high bp upon standing dropped to low 100's over 60 suppine (sometimes at night it goes lower but so does my heart rate). i'm sure someone else experiances this and was wondering if there was some explanation they might have to offer as to why my hr wasn't going down although bp was suppine? I was'nt dehydrated, I checked my nails and my urine was clear as I had been drinking plenty of water. The only other weird side effect I experianced was this roaring shaking type sensation I felt in my ears/head which was going on during the day, although I didn't feel particularly bad otherwise, that sensation is really hard to describe and hasn't happened to me for awhile. This morning, after the first hour of tachy and higher bp when standing it is now 147/85 hr 105 sitting.....this is more normal for me, a little high as usually this time in the day I am more in normal bp range sitting and hr around 90-s to 100 sitting. ?

i started having night driving issues way before other pots symptoms, at least 4 years ago. I couldnt see the yellow lines in the road, well, i could see them but my mind couldn't determine exactly where they were. and I hated headlites in the rearview or in front of me, thought i was going to go head on into a car all the time. I remember how curvy indiana back roads are....couldnt imagine doing that now but not so bad out here yet now peripheral from all the cars aside me these days really screw with me too. Daytime driving is bad now, especially when it is bright out which it often is here in az. on cloudy overcast days I do better.

even people who don't have pots have issues with getting the flu shot as i have observed...often they still get a flu, sometimes i believe when they wouldn't otherwise and still the flu shot doesn't cover every version of flu out there. there are too many flu viruses and they are always metamorphosing every year so i don't understand what the point is. i think the shot is derived and successful out of fear. just my opinion tho.

hmmm..... i'm sorry you sound like you have tons going on,on top of pots. hope you are doing ok tonight ok? take it easy, i wonder if there is more going on then relationship and pots? luv ya...gn

parasite infection are described as leaving the host with air hunger. maybe check into that. same as mold toxination from what i've read. i def have air hunger. it's scary

maybe try taking them together? that's when I noticed the biggest diff even if you try to do half of each pill at a time morning/nigh or whatever. but i never thought i had allergies, it's so weird for me to be on what I considered allergy meds.... since pots and after going on mcad forums and seeing how similar symptoms were. but it has seriously helped! I mean, at least I am not going to er or callin 911 right now. wasn't the case before that, for me. and i find it interesting that it is now what mayo is prescribing out here (antihistimines and gastrocrom, which the latter I do not currently take)...hope it was ok to say that about the mayo....even tho i dont go there i have respect

i have to knock on wood here and i am gratefull- my immune system functions well as far as this topic, i hardly ever get sick from flu or whatever, even with pots. getting sick with flu and such was one thing of the things that terrified me most when i got dx'd since we are supposed to be so succeptable to such. i go to work with people who get the flu every year and they even get flu shots, which i don't, and i have a son in daycare where there is a huge pit of stuff you can catch. i don't get it!!!! but something has to be ok in me at least

i have floaters

yeah, I totally relate. I pm'd you on this subject

atenelol is a bb that doesn't cross blood barrier, unlike propranolol, so it seems to be a treatment for hyperpots people as it also is for hypertension....klonopin and lexepro help with adrenal surges, Doxazosin works by relaxing blood vessels so that blood passes through them more easily. This helps to lower blood pressure...is an antihypertensive. I venture this person is a hyperpots. and I wonder too if he is still on those meds? I love yoga, never had acupuncture as insurance is so stupid and won't cover. I wonder why both klonopin and lexepro tho, they are both benzo's...? mind asking that person? would like to know.

I take whatever h1 and h2 is cheapest on sale, 2x per day taken together at the same time. I was on a mcad forum and read that works better. I didn't notice much improvement until about 1 month after starting. I began only taking the h1 in the am and the h2 in the pm to start, and increased it a couple months later. I also take generic clonopin. What I think the h1's and h2's help me the most with is noise/vision issues, tinnitus, and tingling numb electrical feelings in feet and hands. when I forget to take at night occassionally I notice I feel worse the next morning.

CAN YOU GET TO SOMEONE WHO KNOWS HOW TO DO AUTOIMMUINE PANEL AND KNOWS ABOUT HR BP SUPPINE AND LDOWN - MAYBE TEST FOR CRP?. AND DON'T TAKE ANY MEDS WITHOUT RESEARCH CAUSE YOU ARE THE ONLY ONE TO KNOW WHAT IS RIGHT FOR YOU. UNCAP! CAN 7 TRY 4 2 WEEKS TO DOCUMENT HOW YOU FEEL, WHAT YOU EAT, AND YOUR RESTING TO RAISING HR, I HAVE CALLED SOME NEUROPATHIC DOCS OUT HERE AND THEY R NOT CHEAP. much love:)

i think there is a relation. my big sis has ms although no OI heart rate issues. I have pots but apparantly, not ms after 2 mri's and some other weird test that they did where I had to stare at a dot in a screen hooked up to an eeg where they monitored brain response. But, my big sister thinks there is very likely some related reason to why we all have issues, my little sis has abnormal eeg's as do I, has fainted and has vein problems and chronic fatigue, horrific bruises for no reason, but not OI that she knows of. we all have the same mother, my big sister has a different father than me and lil sis and per standards for ms she doesn't fit the typical type that would be at peril for ms at all.

hope you fared well this past several days, will be thinking about you tomorrow and keep us "posted" lol:) I really have a feeling the surgury will go well, you will be okay, and I hope you find more relief when surgery is said and done.

nope, in my case I am against bb's, tried one, made me so sick. also, one of my friends with hyperpots who takes propranolol and florenisef which I know I mispelled also has fluctuating bp's (high and low) and constantly has to trying to switch figure out which med to take according to fluctuating bp. gets very complicated and not my cup of tea, when you are constantly trying to figure out which one to take due to your current vitals. My neuro wanted my on clonodine (sp again?) due to hypertension but I declined. H1's and H2's have helped some, as well as motherwort for the high bp. I am not so worried about the low bp, as it is usually when I am laying down and my heart is still beating at a normal rate. I also dont salt load, but I do drink tons of water. used to do the gatorade, but didn't notice any change when I switched to plain old water except I was saving money.

I have low bp when laying (approx 100/54) but I am dx hyperpots, pretty high bp when standing 150/100 and higher. and I have the adrenal rushes that you post about although have to say benzo helped me. I am not on meds currently other than klonopin (generic) but I take some supplements and motherwort when I get high bp's and tachy. H1's and H2's, have you tried them? my adrenal issues got better, as well as other neuro symptoms tinnitus and hot/cold/tingling/numb sensations.

me too...will be thinking of you, meanwhile listen to relaxing music, read a good book, watch funny movies. I can't comprehend how scared you must feel but I look forward to seeing you posting in the future about getting thru this and not having to worry about that anymore.

clonazepam has helped me with the adrenal issues(fyi, it is also used in mcad treatment as it is a mast cell degranulator) with the help of taking h1's and h2's, not prescribed by my neuro although he knows about it and wasn't against it, I think I sorta get the not being able to breathe correctly. also, as other hyper's have noted the bb's made me worse. maybe ask your dr. about trying a sort of mcad regime and see if it helps? I also had bad visual issues that have gotten80% better since the h1's and h2's. The clonazepam was huge relief for adrenal episodes, especially in early a.m.

Not sure if this belongs in this or the chit chat but just found out that one of the girls I've met who lives here in phx and has pots (doesn't frequent this forum) came down with pneumonia and another one of my good potsie friends who has known her for some time has not been able to get ahold of her for awhile which is unusual and worrisome. Much appreciate any prayers and/or good thoughts her way for healing. She has had pots all of her life, they believe since the womb. Thank you.

well, I know I've read some people feel better, more energized when they exercise via cardio. The only thing I can do is mat yoga/pilates and I do feel better, maybe tired yet energized but anything else, even a 20 minute walk with my son to look at holiday lights and I am out within 15 minutes of return home. Not sure why. Wish I could get better endurance but just doesn't seem to be happening for me, for right now at least.

ukwildcat, that is interesting thought as I had tonsilitis for most of my 11th year, I was in bed for weeks at a time and as soon as it cleared up thru penicillin it was back again 3 weeks later. after a year of being in bed for much of the year they finally took my tonsils out. Then, when my son was born and everyone talked me into breastfeeding I developed mastitis and didn't respond to antibiotics, they had to do surgery to remove the cyst.....by the time I was in for surgury it was more painful than giving birth.

maybe wrong about the second article about speaking on protozoa when I skimmed back thru I will try to find what I was trying to get down, I think that one I just included cuz I had several articles pulled up and my laptop wasnt letting me post so I had to keep trying and got in a hurry....was saying "post saved" however not posting anything and my son was "pulling at my skirt" got a little rushed. anyways, please refer back to post #69 by gypsysoul anyone who is interested in this topic:) hope you didn't skip that part - her story is interesting

Both of these are on vaccines ---maybe you got the wrong links????? These would be good on the vaccines thread. I've read the first one before. Issie both talked about connection between vaccines and protozoa...first one discussed FL1953 protozoa as well which is how I found Dr. Fry....remember??

for some reason I have had to repost this 3x....idk why. http://autismapocalypse.com/ http://vran.org/about-vaccines/general-issues/doctors-speak/the-truth-behind-the-vaccine-cover-up/ not medically published docs but think Erin Brockovich. post what you think, if opposed or if it makes sense in your case.

did i just write interesting reads 2x in a row, lol. anyway, talking about what protozoa can affect.....sound familiar???? http://www.ncbi.nlm.nih.gov/books/NBK13541/ also read a lot about blood pressure and parasites (single cell parasites too (protozoa)) but didnt save the links.