Anoj

I am not sure where to start. My grandmother has had uncontrolled high blood pressure for many years. It got so bad that her kidneys are going. Her blood pressure numbers were so high (almost 200), none of the doctors could control it, even with clonidine patch and other medications. Her numbers seem to have settled down recently. However, she did faint a few times. It got me thinking that maybe some of her problems could be dysautonomia instead of just what you would consider normal things that happen to seniors. I want to research this for her but don't know where to start. I have seen discussions on this forum about kidney function in relation to dysautonomia, but to be honest a lot of the stuff posted here still goes over my head. The last time I was at her house, I asked to see her numbers and discovered that she has an EXTREMELY wide pulse pressure. Here are some of her numbers: 131/55 157/65 122/56 143/59 131/61 118/54 I don't know what this all means. If anyone can point me in the direction of what to research, I'd be grateful. She doesn't have the internet, so she won't be able to. Maybe I'm barking up the wrong tree with my theory on dysautonomia. If dysautonomia is basically the body's inability to control blood pressure, maybe this fits her? It seems like she's either been way high or way low. Thanks in advance for any feedback.

Well, I'm just curious because Adderall was shown effective for hypers in a recent study. I guess there's the mystery of dysautonomia. It doesn't always make sense.

Lightheartedness when upright, even while sitting. Dizziness, especially upon any exertion. Fatigue upon any activity. Somnolence

Thanks for posting this! Would this be similar to something like Adderall? Does anyone know if this drug would help/hurt those of us with hyper tendencies?

1. Weaning from Zoloft 2 years ago. Drinking 3.5 beers 2 years ago. 2. Being around loud music.

I agree with the previous comments about epinephrine. I request the shots without epi because I get major POTS symptoms with it. There is also some sort of relaxant/downer shot they can use as well. I stay away from both of them and just get the regular shot. I would ask what type of numbing agent they are using.

yep, i sure did. i went from midodrine + florinef to a BB. my doc does leave something to be desired. my BP raised so much, though, it was obvious there was some type of hyper response going on. these were my numbers. based on them, it doesn't look like i meet the criteria, if judging by NE alone. what about the others? catecholomine? why did the epinephrine jump? Baseline: Catecholomine, plasma 480 (ref range <504) Norepinephrine 442 (ref range <420) this was high-out of range on baseline Epinephrine 38 (ref range <84) Dopamine <30 (ref range <60) Upon HUT: Catecholomine, plasma 611 Norepinephrine 479 Epinephrine 132 Dopamine >30 i think i was confusing catecholomine earlier with NE.

well, that was a bust. it got delayed. lol.

do exact numbers really matter? imo numbers are just a range. my NE wasn't up to 600, but when i did the TTT, it jumped dramatically (several hundred points), and my adrenals "kicked in with a vengeance," according to my doctor. so, i don't really go by what the numbers are, i just know that when i stand up my BP and NE rise dramatically and i have pre-syncope/dizziness. so i'm being treated accordingly, as hyper POTS. same with POTS. i didn't get the 30 pt. rise in BP ... can't remember whether it was 20 or 25 ... i asked my doctor point blank if i had POTS, and he said yes. i don't think i fit the clinical criteria, but i know i have some form of dysautonomia. i'm not really sure how much of an expert my doc is, anyway.

i don't take any sleep aids, and frankly i wouldn't want to. i'd probably be near comatose. i just see this as a PITA. i see whatever sleep problems i have as related to POTS, and i have a strong feeling these people will look at it in the narrow tunnel vision of sleep apnea only. i just look forward to coming home tomorrow.

My pattern is late - I like to stay up late & sleep late. Unfortunately, that's not very convenient.

Are there any particular things I should be asking them or looking out for? I mean, in relation to POTS/dysautonomia. I don't expect them to understand my condition, but I want to get the most out of this experience, in light of my illness. My previous holter monitor found that my HR was extremely high upon waking, but I don't know what that means. Thanks in advance!

Sleeping is oddly the only "quick fix" for me. When I get overly dizzy, extreme sleepiness is usually associated. If I sleep 10+ hours a night, I usually have a good day the next day. My SSRI keeps dizziness in check. Recently I added Adderral into the mix, and it instantly made the dizziness better. I have some issues with the drugs, and it's not always convenient to sleep. So, nothing is perfect. Everyone is different. Just some ideas.

This may sound like a dumb question, but what are the consequences of not sweating, both immediate & long-term? And, is this the only consequence of SFN? I am under the impression that the neuropathy is what causes the veins not to work right. I'm sorry you had a bad experience with the doctor. I think you're right to take the test results and progress on your own. It's very similar to my situation, in which I went to a certain doctor just to get the test results/info, but his treatment leaves something to be desired.

i did take the article to him. he's just my GP, but he's willing to experiment and has a great bedside manner. he knows i'm not a druggie - in fact, i hate taking anything at all. he gave me a really low dose, but i split them into quarters. to my amazement, i tolerated it well. usually stimulants cause me to be dizzy/sleepy, but this didn't. i did quit taking them today however, because i'm weaning myself back onto my zoloft. once that settles, i'm gonna try the adderall again.

that's awesome! go find a cure for us. lol.

i have gained 80 pounds, which i attribute to zoloft, not POTS.

FYI, i tolerate Allegra well. it seems to be the best one (for me) without side effects.

well, i left my dr's office today with a small dose of adderall (5 mg). it's the only thing i haven't tried yet. well, basically.

i have a tendency toward depression. i noticed it got a little worse in the beginning but my body adjusted to the florinef. i got down to half a pill every other day. that was the minimum that i needed to keep me going.

what is the treatment for SFN? i have that too.

i just read that! thanks for posting the article... i found it very informative. so adderall at 100% means everyone who took it had good results? i get dizzy when i take stimulants, so i don't know if that would work for me. it is basically the ONLY type of med i have not tried. the article also seems to indicate that hyper patients respond well to SNRIs.

i am going to my doc today to discuss my SSRI. my main problem is weight gain. i have heard that SNRIs aren't as bad for weight gain. but, i'm hyper POTS, so does that mean i should stay away from an SNRI? has that ever been stated by any doctors or research? i was on effexor a long time ago for postpartum. if i was late with my dose, i got horrible brain zaps. then, i started getting the brain zaps earlier and earlier, even if i wasn't late on my dose. this is scary to me. they say these drugs aren't addictive? then why was my body building up a tolerance? at the time, i didn't know better so i got off cold turkey. it was so bad. anyway, i don't particularly want to deal with SNRI withdrawal again. i have found that getting off of zoloft is way easier. if i could just find some way to deal with the constant hunger, i'd be ok. i began weaning off of zoloft to try to get my weight under control. i'm at half dose now. but my POTS is much worse! i have come to the conclusion that i need to be on some sort of AD.

thanks for all of your responses and concern. it MEANS A LOT. every little bit counts.

you guys, i just thought to come here as a place to vent my frustration! i got the rejection email today! i am so beyond confused and disappointed!!! :angry: :angry: :angry: :( :( :o :o i had decided to take a chance on this job and go for it. i had the interview last friday, and it went really well! fast forward to today and i get the rejection email. they went with another candidate. i emailed him back and asked why (politely). the crazy thing is, i didn't even APPLY for this job. they had my resume on file from 6 months ago and remembered me from 70 candidates. plus, we had mutual professional acquaintances. maybe they called around and found out about the fainting? i don't know! i just feel like giving up now! this is maybe the 4th job that hasn't worked out since i got sick. i have had all these opportunities dangled in front of me (low-stress, work from home, or part-time opportunities) that didn't work out for one reason or another. my salary requirements were too much. or whatever. rejection. too sick to work up to my qualifications and leave the current hellhole. not sick enough to get disability. etc. etc. at this point i am afraid to even LOOK or apply anywhere. it's not that big of a city, and i have interviewed around town so much that i'm afraid when it's really time to leave i will have burned through too many options. i am employed right now and working from home, so i know i'm in better shape than a lot of people with POTS. i am abused and treated badly where i work, so i have been desperate to leave. i just feel like giving up now. how much disappointment can a person take? for the past 2 years of this illness, i've worked so hard at maintaining a positive attitude and trying to stay healthy, but things just keep going wrong. i think a person can only take so much before their attitude starts to suck! i mean, my marriage is bad, my job is bad, i keep getting things dangled in front of me then taken away ... i go to physical therapy all the time and KEEP gaining weight (from meds that i can't get off of). etc. etc. etc. sorry, but i can't find a reason to smile today.