Anoj

just had blood volume testing done today. it took them an HOUR AND A HALF to get good veins.

thanks for asking this question, it's something i've wondered myself. i do not want to be on zoloft forever. i've gained SO MUCH weight on it. that's the main reason. i'm not going to attempt to get off of it until my body feels much more stable.

i was in physical therapy for 3 months. the staff didn't know anything about dysautonomia; i had to teach them. they just had me do light weight-lifting and ride an excercise bike. the more things she can do sitting the better. there is definitely a balance. if i overdid it, i felt worse. but, when i engaged in regular, light exercise, i felt TONS better. the key for me was having light, regular exercise. by light i mean i rode a bike for 6-8 minutes, then did some rotations with different machines with the weight set to a moderate setting, then rode the bike again. i felt the worst during the first week. by the second week, i noticed that i had a lot more energy for a few hours after the sessions. looking back, i think i felt better then than i do now. that actually prompted me to renew and go back for PT again. it's been about a year since i went the first time.

thank you for your responses. <3 i have a propensity for anxiety anyway, so this is all a bit much. i've been off of midodrine for 2 days. it's actually not as bad as i thought it was going to be. i do seem to be feeling gradually worse. i was worried about vestibular testing messing me up a few weeks ago, and it wasn't as bad as i thought. i guess i need to just quit worrying! going for blood volume on thursday ... wish me luck.

i have something similar, except mine takes a week. i know that probably sounds weird, but i've put the clues together. my problems are with loud sound. i used to be in the music industry. i used to be comfortable with loud sound systems, but now if i go out to hear music, exactly one week later i have pre-syncope, and then i'm down for the count for 1-2 months. i don't think it's unusual at all that you have delayed symptoms.

Hello all, I have written about my various upcoming testing in a few other scattered posts. Sorry if they are disorganized. This one is mostly about my emotional feelings concerning testing coming up. I have barely hung onto my job for the past year and a half. Have been discriminated against and treated horribly. Now, I am preparing myself to get the appropriate testing beginning on April 12 (blood volume) and then TTT on April 16. I am pretty scared at what's about to happen. I realized today that on Monday I am supposed to stop taking my Midodrine in preparation for the tests. I am also to stop the Florinef. I only take half a 1 mg a day. A few weeks ago, I stopped that. It took only 3 days before I felt like I was going to pass out in a meeting at work. I'm just really scared and need a cyberhug. I'm worried about what my body is gonna do without the medication. Then, the hour-long car ride to the hospital. Then, the testing. I am preparing to take FMLA from work (again). This will not be good for my current situation there. I feel that my body will be shocked from not having the medication. Despite what they say about Midodrine lasting only 4 hours, I feel that if I do not take my medication regularly - exactly as the routine, every day, the same exact way - my body freaks. I'm just SCARED, y'all.

once mine leveled out, it really helped and still does. in fact, i don't know how i could function without it. but, as one poster said, everyone's body is different.

great. maybe i shouldn't have asked. i'm having anxiety about the tests coming up, so i don't know if this is helping me.

i don't remember how this affected me when i first took it. i was laid out in the hospital and miserable, so i'm not sure which sensations i was feeling were coming from what. i have tried to increase the dose a few times with unpleasant side effects, but i've wondered if i just stuck with it if it would go away. this morning i accidentally took 2 doses and ended up having to call in sick. first time i've ever done that. went from 5-10.

thanks for your responses. i mainly wanted to know if you are placed in an enclosed machine. my dr. asked me if i were clausterphobic ... didn't know why, but i think he was referring to the vestibular testing.

so what do you do, just stand upright against a wall for awhile?

hmm ... i am pretty sure that under ADA you are protected from having to disclose this information. in my case i was taken out of work on a stretcher, so everyone knows, and the results have not been good for me.

Can anyone here tell me what's involved with this? I've googled and can't seem to find what I'm looking for. I want specifics like, do they inject you with something? Do they put you in an MRI machine? How long does it take? Does it make you feel funny? I'm just trying to figure out what to expect, as I'm having this done soon in a nuclear medicine center. Thanks in advance!

is there any place on this website that explains what they're testing and what they're looking for in specifics? also the possible diagnoses? idk much about hyper vs. hypoadrenic issues, etc.

yep, it's hard enough dealing with the illness, much less discimination on top of that. i like the fact that there are forum members here who have understanding bosses. that's got to help some.

Very sorry to hear this. It is definitely a loss that I am sure you will mourn. I throught I lost my job several times during this orderal, and each time was devastating. I am glad that you have disability insurance!

i don't think this guy is gonna stop before syncope. he called it the "torture chamber" and said they wouldn't stop. i know that sounds bad, but in the context of the conversation it was kinda funny.

oh my gosh, i can definitely relate to your struggles. i could write a book about the things i've experienced at my job. like you, i took STD and went back to a semi-functioning level. they let me work half days in the office and half days at home. eventually i got good enough to start going in full days. then, unfortunately i had 4-5 setbacks, and each time i need to work from home for weeks, sometimes months at a time. i'd say i've been in the office about 50% of the time the past year. it's very unnerving to have these setbacks because i take for granted when i'm feeling good, then all of a sudden BAM! i work in a very toxic, dysfunctional environmnent. i think my boss tried to use my illness to get rid of me. i had to fight for my job and go through HR. i'm a writer, so i was able to threaten them with the ADA, which says telecommuting is a reasonable accomodation for a disability. at times, i think about getting back on STD and taking FMLA again. i was lucky that my insurance policy didn't give me any trouble about my claim. at one point boss forced me to call in sick when i was capable of telecommuting. after i complained, they were forced to give me the time back! that's when i thought they figured out what they were doing was illegal. in addition, she is letting other females work from home because they had babies. so, disability is a problem but having a kid isn't? it's tough out there. anyway, my biggest concern would be whether they would fire you before you have a chance to claim your STD again. if they fire you, i don't believe you have that protection? i'm always worrying about their perception of my performance. it's STRESSFUL. a couple of times i asked them point blank if my performance was in question. they said no, but i got an average performance review and no raise. i think it's most important to file for STD if you think there is a high risk of being terminated - BEFORE it happens. i don't know all the details of your situation, but that would be my advice. also you mentioned that you couldn't afford a reduction in hours. idk, isn't that better than NO job? i worry that if you keep pushing yourself it will not be good. we all know how that turns out, right?! sorry you're going through that! i wish you the best.

wait - i googled this. scary! your heart can stop? how do they fix that?

oh yes, someone is definitely driving me! in my case, my sickness related to the car ride is more from motion, not positioning. for some reason the faster i go, the worse my symptoms get. the only way i can survive a long car ride is to have someone drive me as slow as possible on the interstate. 70 mph is too much. at 55 i feel better. i also fixate on one object, by say reading a magazine. i think it tricks my brain into thinking it's still. i guess his theory is that all of the stimulation is causing a vagus response? thanks for your reply!

ok, this is all very, very good info. thank you so much! does anyone know exactly WHAT they are monitoring, besides heart rate and blood pressure? aren't there dopamines or something like that, too? he mentioned the vagus suppressor as a form of treatment if the tilt table showed his suspicions were correct - that i have an overactive vagus response. this wasn't in reference to during the TTT. i think what he was saying was to get my vagus nerve to stop freaking out all the time. i rarely get tachy, although i have sometimes, so i'm pretty sure i don't have POTS.

when i had the original TTT done, they didn't monitor any chemicals (dopamine, etc.?) i still have no idea how that works. my heart rate and blood pressure went down after being administered nitroglycerine. i almost fainted and "made" the nurse put me down. :/ they said my TTT was "positive." no other details.

i had very few fainting spells. leading up to this, i was living life 100 mph and very stressed out. this all started when i began weaning off of zoloft and got the dizziness/electric zaps in brain. after that, i drank a little bit of alcohol and crashed. before that, my only symptoms were bad fatigue and some shortness of breath in the shower.

oh - also he said he thinks my problem is related to the vagus nerve and said i may need a "vagus suppressor." what is he talking about? a beta blocker? i thought vagal supressor = fainting, so i'm confused.

I am still trying to wrap my brain around my appointment yesterday. I have spent the past 16 months seeing a well-intended cardiologist and am taking Midodrine, Florinef and Zoloft. Long story short, he recommended I see an electrophysicist who in turn recommended a guy about an hour away. Said he was involved in fainting studies in the 1990s. Turns out the guy makes weekly visits to my town. I was able to see him yesterday, and I am floored! Apparently, this guy started a lot of the research/testing that is currently being used now in Cleveland. ! He knows Dr. Grubb. AND HE'S LOCAL. OMG! I have done extensive research and have never seen this guy's name. I think he, like many cardiologists, don't go into the field to treat fainting, however he is willing to work with me. (He called this "public service" - in other words, this is not what he would prefer to be doing.) I am now going to have what I assume to be a proper workup. Here's what's on the form: Head up tilt Head up tilt with Isoproterenol Head up tilt with NTG stimulation He writes under patient's diagnosis: Syncope (fainting) Near-syncope (severe dizziness) Chronic fatigue (?? do not like) Autonomic Dysfunction Apparent Seizure Disorders (???) Risks: Syncope (fainting) Seizure (convulsions) SERIOUSLY? Hypertension/hypertension arrhythmia and conduction disturbances Part of me is like - do I really need this? It sounds horrible! Other part of me is very excied to find out exactly what kind of dysautonomia I have. I know I have it, just not the details. I am really scared about the tests! I don't have frequent fainting, but when I do, it takes at least 2 months to recover. The past year I would say I've been functional maybe 50% of the time, if I'm lucky. I realize that my case could be worse, but it's still life-altering to say the least. No meds a week before the tests? TERRIFYING. Recovery time? TERRIFYING. One-hour ride to the hospital - with no meds? TERRIFYING. (I have terrible near-syncope during long car rides.) Please tell me what I can expect from all of this. Please please please, I need some words from someone who has been through this. I have so many mixed emotions - excited, scared, etc. Meanwhile I will do some research on TTT. I had one done before, but not to this degree. Thank you!