Anoj

i pool in my feet and especially my toes. it looks weird. my toes get red. my son calls me "sausage toes."

thanks for writing, mcblonde ... i do remember your posts in my other thread. thank you so much for your viewpoint. it is really important for me to hear all of these things, all sides of the coin. my interview it tomorrow. my biggest concern is that this is all the way across town. i think i will be fine working. i'm more worried about driving there. to make things more confusing, my current job offered a me a new responsibility, which i really wanted. i'm still struggling with giving up so much $. anyway, i am really bad about making decisions! i could waffle back and forth and back and forth. i will just have to wait and see how things go tomorrow. thanks everyone for lending an ear. i appreciate everyone's input!

alcohol was the trigger when i had my POTS crash. 3.5 beers, and i ended up in the ER. i have not tried to drink since. i'm jealous of whoever can drink! i say go for it (slowly) if you can tolerate it, but be careful!

i feel for you. that's a long time to wait for answers, and then, it doesn't seem like you have much answers now? the first TTT i had done was by a well-meaning cardiologist who didn't know all of the specifics of dysautonomia. to him, the results were either "positive" or "negative." it was either faint or no faint. not much info there! fast forward to 2 years later, and i found a doc who did blood tests for catecholamines, and i now have much better answers. when the old doc sent the new doc the results of my previous TTT, he didn't even send the HR or BP numbers! it just said that my TTT was "positive," and my new doc sorta laughed. i am assuming that you don't live near a proper center/doctor or that you are unable to travel. maybe you just have to work with what you've got, which is what i did for a long time. you can try the main medications, which i think are: Florinef, Midodrine, beta blockers and SSRIs. beyond that, i really don't know what else there is. sometimes i think even the docs at the extra good super awesome places like vanderbilt can only do so much for us. wouldn't it be so nice if we could just be fixed!?! perhaps your best option right now is to experiment with medications and try to find what works best. the most important thing is if your doctor(s) are wiling to experiment a little. i was so lucky that my first doc was compassionate and willing to try a few different things with me. he was also very good about helping me get disability when i needed it! so, doctors can be good for more than diagnosing things. he didn't know everything, but he was great nonetheless. i wish you luck in your journey! p.s. my new doctor isn't perfect either! lol

tbh, my heart rate isn't as much of an issue for me as pre-syncope. however, i do feel that betaxolol lowers my heart rate and adrenaline surges. it does help me. a few years ago i tried metropolol and propanolol, and i noticed immediately that they made me short of breath! i could not tolerate them at all. it took a few years, testing and trial and error for me to find this one. betaxolol is a beta1 receptor blocker, so it only affects the heart and another organ (i forget which one), instead of slowing down your whole body. i think this is why my doc has found more patients tolerate this one better. it did take me a few weeks to get adjusted, but now that i am things are going smoothly. at first i felt like a ton of bricks. i'm glad i stuck it out.

thank you all so much for your replies. i'm at a very emotional/tumultuous time in my life right now. truth be told, i'm scared. we are a 2-income household. my husband alone doesn't make enough to support us. however, my new salary would give us enough to survive. it just ***** because for the first time in our lives we have extra cushion. we've worked so hard for this for so many years. currently, if an appliance broke, we would be able to replace it. with this new salary, we would have to charge it and pay it off. we won't be able to save the way we do now. so, although we will be tighter, we will not be starving. i am trying to look at it as a temporary thing. maybe for the next year or two until i'm better (which hopefully will happen). i guess i can always be a corporate gangster later? i'm also scared about whether i can make it physically. i'm more worried about driving all the way across town than i am actually sitting there and doing the work. i am pretty sure i can do the work. i think my fear is more due to my own mental problems than actual reality or facts. basically, i'm a worrier, and i hate change. my current job is going so badly, i just feel this is a no-brainer. lately i've been feeling like they're trying to phase me out. i'm being cut out of meetings, and my work seems to be drying up. i've been set up to fail many times (my ideas are ignored, then months later someone else picks them up and takes the credit, i'm belittled on conference calls, was told my performance was not high-performing, etc. etc. etc.). i hired a lawyer, and now he won't get back to me. the latest is my current job is letting me work from home, but they wanted me to sign an agreement saying that working from home could affect my performance! UGGGHHHHHH. no. i just can't take the abuse anymore. so anyway ... i'm interviewing for this thing on friday. it's not actually in the bag, but the guy remembered my resume from about a year ago from a stack of 60-70, and we know mutual professionals, so it's looking good!

why would fever be related to CFS? i don't get it. i dunno, i went thru the infectious disease doc at the time i had the fever, too. in fact, i went to 14 dr.'s in all! no one could really find the cause. i also had a bout of colitis from taking some antibiotics. they said that could have caused fever too. i went through a very bad phase during this time of my life. the fever felt so bad. i became depressed because no one took me seriously. a lot of my docs said 99 wasn't a fever. regarding mono, it was determined that i tested positive for EBV, but it was from some time in the past. there wasn't much to do about it. i did take some chinese herbs to try to clear it from my system. but, i ended up just getting on an antidepressant and trying to block out what was happening. eventually, my fever went away. it wasn't a sudden thing. i was practically suicidal over it. now, i WISH i could go back to the days when that was my worst health problem! HA. in a way, it is what prepared me for going thru POTS. i kept telling myeslf "you got over that, you can get over this." now, almost 2 years after POTS hit, my hope is diminishing. i don't know if i've helped you, photographerm, but i posted in this thread because i do remember how awful life was when i had the fever, and i empathize with you greatly!

Some of you may have seen about my work issues, which I have written about on this forum. I have a new opportunity to work part-time. I really want to do it. In fact, have pretty much already made up my mind. The best part is it is 30 hours a week / 6 hours a day. I think I can handle this. It's also in my field and at an awesome place where I want to be. Another great thing is that they pursued me. Networking had a hand in this. I want to know your experiences with working part-time. If I take this job, I will have about half of my current salary. I also will not have the same benefits. However, I will have my soul back. I will be home with my kid every afternoon after school. I will not face the same discrimination. I do not have job security or happiness where I am. It's a constant battle. I've hired a lawyer. I'm miserable. People get laid off there all the time. I think I need to take this leap of faith. The only thing I can't get past is the money. Not because we can't afford it - we can. But because I'm worth so much more. It's hard to put myself in the mind-set of the salary range of an intern or recent grad when I have more than 15 years of experience. I am struggling with getting over this mental hump. Has anyone else here had to take a "lesser" job just to survive - physically and mentally ... and how did you deal with that?

i take betaxolol and it works pretty good for me. my doc says in his experience, his patients complain less about this one than others.

ohhhhhhhhhh man. i got this once. it lasted for 2 years!! i never figured out what it was. at the time i had a bladder infection. after it went away, the fever remained. i ended up being diagnosed with interstitial cystitis. this was years before i had POTS. i often wonder if all that back then was dysautonomia creeping up. body temp is included with autonomic regulation, so ... who knows?

nevermind ... found this. http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory it's a lot to take in, though. i'm interested in the EDS/full head feeling connection.

how do you know if you have EDS? what kind of doc diagnosis this? can you have it without any symptoms? i have never felt "hypermobile," but lately my TMJ is getting worse and worse. my jaw has started locking up, painfully. sometimes it takes hours for it to slide back into place. it occurred to me suddenly that - DOH - this could be EDS? what do you think?

Are you thinking about Dr. Driscoll's theory? Anna, posted a thread on this awhile back, with the full head feeling with bending over. It seems most of us with EDS have this reaction. That would make Dr. Driscolls theory make sense. Wouldn't it? Issie can you link some info on this? i get this sensation even when i stand up. weird because it's supposed to be empty of blood, but i feel lots of pressure in my head when i stand up. i just don't understand these things.

how do you know you don't have pooling? you could be pooling in your abdomen and not know it. i'm not sure whether pooling v. not pooling will give you the info you need. i am having the same dilemma with my SSRI. it helps, but i hate the side effects (weight gain). i think the SSRI helps because it does something to your autonomic nervous system, which to me is treating more the root cause rather than the effects of the condition (for example, florinef artificially increasing blood volume).

i would love to know which ADs cause the least weight gain, from your personal experiences. i have gained 80 lbs on zoloft, which is why i am getting off of it now. problem is, it works so well for dysautonomia. so now that i am getting off, i'm suffering from what i call inertia. just can't seem to move. i would like to know if SNRIs are OK for hyper POTS. i'm really confused about the norepi issues. i have too much when i have a spell, so does that mean i should stay away from SNRIs? however, i have also heard of NET deficiency. does that mean low norepi? i've read a bunch of threads on this forum and still confused about norepi.

when i have fainting episodes, i usually get diarrhea. i thought it was very weird before i got diagnosed, but my doc explained to me that it is part of the adrenaline reaction. so is vomiting and sweating.

i have always wondered about this; i think it's an excellent question!

Nowwhat! How do you know if you have joint hypermobility? Is it possible to have EDS without having symptoms? I don't believe I have this symptom, not that I notice, anyway.

One more question - you said there were some treatments for sfn. Can you explain what some of them are? Thanks!

Such a great explanation, thank you so much Arizona girl. I'll look into finding a different neuro

this happened to me, but i'm not sure i have any information you can use. when i was initially struck with POTS, i couldn't drive for 4 months. then, i gradually started making short trips. even now, if i have a setback, i cannot drive for weeks or months at a time. it seems to come and go. and take its own sweet time! nothing i did or didn't do seemed to make a difference. wish i could help more.

20000.00 ... as in 20K??? omg

puppylove, since you're so young, i hope that you outgrow this condition. it seems like you have a pretty good chance? i got stuck with this in my late 30s. i can totally relate to what you're saying about missing out on stuff. for me, there is also a mourning that goes with missing the person i used to be. i was slender, highly employable, a musician with "fans" (which is a total trip!). i really miss being on stage! even if i could handle it, which i can't, i would never put my fat gross self out for the world to see, take pics and post on the internet. LOL aside from that, i have just been able to travel successfully for short trips, which i couldn't do before. so, now i can go visit relatives nearby, and that makes me very happy. i really hope that your situation falls into the category of having it young and therefore outgrowing it. crossing my fingers for you!

Is she expecting you to get MS??

yeah ... i was reading, and noticed that - pain. hmm ... he didn't say the drug would help pooling. he was hoping it would. kind of an experiment. what do you mean large fiber nerves? is there a small kind? should they be looking at something else?