Anoj

thanks. i would just love to be able to explain why i can't be active in any way shape or form without hours of rest in preparation or hours of rest after the fact. even to myself. lol.

thanks for your response. i agree with you 100%. i found a website on workplace bullying, and it definitely fits the bill. that's one of the hardest things about this whole situation - being abused. i'm not the best at stoppping this behavior, but i'm trying. right now i'm trying not to freak out becs i feel like i've tapped the hornet's nest by insisting that they let me work from home full time. but after forcing myself to go in for the past year and a half, i feel like i have put my recovery at risk by pushing myself too hard. emotionally, this is the pits. it's just a toxic, dysfunctional situation, and frankly i'm desperate to get out. i feel stuck between a rock and a hard place.

they can fire you if your FMLA runs out and you cannot return to work. if you return before FMLA runs out, your doctor needs to release you, and at that point the release lists limitations and/or accomodations. in my case, i believe working from home is a reasonable accomodation under the law. i have considered a lawyer many times. the past year and a half has been an up and down roller coaster. i feel like they want to keep me on my toes and not let me get comfortable. they have let me work from home, but there was always a consequence. (eye rolling behind my back in front of the rest of the team, pressure to return, total lack of respect as an employee, etc.) so, they may argue that they have been accomodating, even though they have treated me like total crap. at that point i feel like the situation is muddied. i'd have to prove retaliation in court, with documented events of them saying my work is bad, etc. i'm sure they have their own documentation of my work performance, which remember, they said is not "high performing." i have been extremely well-respected at every job i've had except this one. in fact, at my current place of employment, i am well-liked and respected by co-workers and peers. it is just one supervisor (who has a lot of power) who has no respect for me or my work, and she is calling all the shots. in fact, she isn't even following the company's HR policies, which i am very familiar with due to the nature of my position! i suppose it would at least be worth a consult with a laywer, to at least be prepared for my conversations with them. my mother is a paralegal and says a legal battle would be extremely difficult. then i think about mental energy spent - do i really want to sue someone? not really. i put in an app for a job i was offered last year. it would be a HUGE pay cut but a lot less stressful. they liked me, and it's in my field. i'm considering asking them for work from home status or part-time at the salary they're offering for full-time. after having a previous work from home job offer rescinded, i am not willing to reveal my condition. it would be total chance whether or not i could physically handle this new job and whether or not they would be flexible or understanding. i just don't know how any of you who can't work cope financially. we are a two-income household, and both my husband and i are starting to get scared.

Is there anything we can pinpoint to help explain to others? Perhaps to help educate other doctors? Or educate our family members, etc.? Is this caused by lack of oxygen to the brain? Are we worn out because of the tachy? It is because of lack of blood circulation? Is it positional? I would love to be able to explain this articulately. I would also love to avoid the term "chronic fatigue," as I feel this condition (POTS/OI) is what causes my fatigue. Thanks!

mine was on the low side when i first started having problems. then when i had POTS crash, it was very low. months later, i noticed it was "normal." even more months later, mine rises when i have issues. i was recently dx with hyper POTS. i'm still kind of in shock about this new development.

Above post ^ good info. I see it in my toes mostly. I have always thought that was weird. My son calls me "sausage toes." Libby, you have neuropathy too? I can't remember if we've discussed this before. I'd love for my cardio to think this wasn't becs I'm obese and understand that it is part of dysautonomia somehow.

This is long, but I'd really appreciate a read. Out of everything I've been through the past 1.5 years since POTS - including not being able to perform as a musician anymore, missing family functions, not being able to travel, fainting everywhere and feeling like crap - the worst thing by far has been the treatment I've received at work. I work for a very large corporation. We have employees all over the world and tools like VPNs, instant messenger, live meeting ... anything you can imagine to facilitate communication among employees. I am a corporate writer. This is a total desk job. However, I am sick enough to make driving in heavy traffic to and from work, riding the elevator and even sitting upright in a chair for hours at a time difficult. Working from home, however, poses no problem. I have a home office and can easily work from a lap desk. After being wheeled out of work on a stretcher and hospitalized, my boss agreed to allow me to work from home half days and in the office half days. Sounds reasonable, but it wasn't without a fight. At first she said it was OK for me to work from home, then she changed her mind. Not only did she change her mind, she gave all of my work responsibilities to another employee. The employee just had a baby. She was allowed to reduce her hours and work from home doing MY old job - but I wasn't. (Because working from home with a newborn is so easy, but having to sit in a recliner isn't?) Additionally, SHE received a BONUS for the project that I was supposed to be working on once it was complete! Anyway. I agreed to the half-day arrangement because we are a two-income family and I was desperate to remain financially secure. When I returned, I was lectured about not "complaining" about my condition to anyone. (WT...? I am the same person who tried to HIDE my problems.) When I returned, it was made clear that they would have to "find something" for me to do and re-integrate me back into the team. I guess so, since I was stripped of my former responsibilities. Even though I felt shaky physically, I went ahead with the arrangement and dragged myself into work every day. To this day, I wonder if I should have just stayed on LTD through my insurance. But no, I wanted to try to make it. Since returning to work in the spring of 2011, I have had numerous setbacks and fainting spells at work and had no choice but to work from home. Since I had already demonstrated that I could accomplish my tasks during the half days that I was at home, I was allowed to work from home full days when I had setbacks. Problem is, my setbacks last for two months at a time!!! Here's where it gets tricky. Although I was technically "allowed," there was a lot of pressure to return. "We'd like you to return. We'd like to see you in the office. We want you to return healthy and strong and working full-time." (Would you tell someone in a wheelchair that you'd like them to return to work feeling strong and without their chair? Gee, I would love to return healthy and strong too, but I have this little thing called a DISABILITY!) I am always encouraged to take sick when I have a setback, even when I am technically able to perform my job at home. Once, amid fussing and yelling, boss tells me I have to take sick days. "WHY ARE YOU WORKING FROM HOME TODAY? I AM NOT GOING THROUGH THIS AGAIN. IF YOU'RE SICK, TAKE SICK." I am pretty sure this is ILLEGAL, so I called HR and explained that there are emails I cannot answer and work I could be accomplishing, except my supervisor has ordered me to take sick. Magically, I was later informed that the sick days I was forced to take would not be docked from my time. Hmm. I figured they had realized that under the ADA, telecommuting is considered a reasonable accommodation. At least, it is the way I'm reading this: http://www.eeoc.gov/...s/telework.html Where I'm coming from is - I make really good money, and I can perform everything at home. So why not fight for my job? I am afraid that if I just let it go and pursue the disability route, I will have trouble demonstrating a disability. You're a writer, you can do that from home. However, after years of abuse at work, I'm wearing down and don't know if I can stomach the atmosphere anymore. It is truly toxic and extremely stressful. I cry frequently. A second woman who had a child was also allowed to reduce her hours and work from home. And, another woman who got engaged to a guy in another state was allowed to work from our office in that city, hours and hundreds of miles away! And work from home when she has her period! ("No one cares where I am, as long as I'm getting my job done.") And work from home when traffic is too bad! I have brought up these inequities a few times to my immediate supervisor and to HR, but nothing has changed. I am now on my second round of FMLA. While away from the situation, I see things more clearly. I have decided that I need and DESERVE permanent work-from-home status and made that clear to my supervisor, who is taking that back to HR. I am awaiting the decision. However, I am at a place emotionally where I CANNOT do this anymore. It's hard enough fighting for your health, then to have to fight people who are obviously trying to get rid of you. I mean, really, that's how I've felt ever since I got sick. This boss is horrible to begin with. I counted 15 people who left our team in the past 2 years. Honestly, it wasn't working out before I got sick, and now it's just even worse. I've applied for STD through insurance and am awaiting their decision. This time, I am thinking of just riding that train (if it comes) and not fighting for this job anymore. It really burns me up that people who do not have disabilities are given permanent work-from-home status, seemingly on a silver platter with no restrictions, and yet I am constantly being guilted and berated because of it. ("Mom No. 2 is working from home on a limited basis. Please respect her schedule." But for me, it was "Don't complain if you feel bad.") I could list some more ways that I've felt disrespected and abused, made to feel inferior and treated like a second-class citizen. Like being called on last in meetings as if I'm the least important person in the room (conferenced through phone, like half of our team!), berated in front of others for not presenting material exactly the way she wants it - petty stuff, trust me - and finally giving me a mediocre performance review and being deemed not a "high-performing employee." (Based on her dislike of ridiculous things like my use of "for example," "such as," and "through." SIGH. Do you guys think I have any legal grounds for working from home based on ADA, the link above? Would you personally pursue disability rather than a toxic, stressful job? Obviously I will do what's best for me, but I do want opinions from people who have been where I am. I feel as though the last year and a half I have pushed myself to work and as a consequence may have actually impeded my health progress. Although now I know I have hyper POTS and apparently this is the kind that is least likely to improve??? I am torn up about my situation and constantly worrying about $. It's going to dry up soon if I don't return to work or get approved for STD. My hubbie makes good money, but I'm not sure he can support us. I'm going through all the worst-case scenarios. Thinking of refinancing our house, selling a car, etc. I just really DO NOT want to go back to work there. In case you were wondering, work-from-home writing jobs don't pay well. I am also looking into part-time employment, but again - most of what I'm seeing is low pay, not to mention, I'm not very confident I could consistently make it into an office, even for a short time. Also, I had an opportunity to work from home recently. I decided to come clean about my condition because I couldn't stand the guilty conscience, and the job offer was withdrawn! It's a cruel world for people with disabilities!!! :( :( :( :(

i am a writer/editor too! i've been drafting my own post about work in my head all day. i may start another thread because i have some specific issues to discuss.

same question ^ where did the experts come from? my current doc thinks my POTS is from deconditioning, so i'm not sure i would be successful with SSDI. CONGRATULATIONS on getting it. that's awesome. does anyone know what happens if you happen to be on a disability claim from an insurance company?

Monstrosity, please keep us posted.

It doesn't help, it's horrible lol. If I had a cup of coffee I'd be in bed for the rest of the day. What I would really like to know is why is this dizzy feeling identical to dizziness from SSRI withdrawal. It's the exact same feeling. You said dopamine ... Maybe this is something I will explore.

It's hard to say becs I'm not sure I understand your question? I get little warning about the sleepiness. I don't really collapse becs I limit my activity so much. I just lie down in the couch or in a chair & the next thing I know, I'm out. This is MUCH different than pre-dysautonomia tiredness. I can't think or speak well when this happens. It's out of my control.

Lucky for you that you don't experience much dizziness! I notice that when I get dizzy it is accompanied by strong sense of sleepiness. If I take a nap, the dizziness decreases. Actually, I should say WHEN I take a nap, becs when it comes on, there is no stopping it.

I get dizzy & sleepy from any stimulant, including caffeine and Synthroid. No tachy. Wussup with that.

I had this for a while and was on H1 & H2 antihistamines. I suspected it was an allergic rash from gluten but could not get that confirmed.

You gained 45 lbs back from Zoft in three weeks??? I have heard Lexapro is the best as far as weight is concerned & that Paxil is the worst. I am weaning off of Zoloft now after 2 years due to 80 lbs of weight gain. At this point the negative=weight gain outweighs the benefit of this drug. If you search my posts you can see more info on SSRIs. I have. Een discussing them lately. Everyone is different, but in my experience, I have gained obscene amounts of weight on both SSRIs and SNRIs. I have friends who have been able to maintain and control their weight on SSRIs, but it takes LOTS of work. Idk how they do it.

seeing an endo who will treat you based on symptoms is optimal. lab numbers aren't one size fits all. i tried the armour (T3), and it didn't help me, so i'm back on synthroid (T4). but at least my dr. was willing to try. now that i'm on the beta blocker, i wonder if i don't need to up my dose? (people take betas for hyperthyroid.) i plan on asking my endo about this. i have always had a problem upping my thyroid medicine, though. i'm very sensitive, and it made me dizzy. with my current weight problems and low thyroid, he may suggest upping it again. this time i will try to stick it out if that's the case.

to the original poster, i could have written a similar post myself. after seeing all the responses, i have come to understand that this may be common for those of us with a chronic illness. at least we understand each other. i see that your friends at least still keep in touch with you, although it may not be the same. in my book, that's great! at least you're getting something. i have a few very close friends who simply will not call, or even return my calls for that matter. and, i wish they would very badly. especially on bad days when i'm stuck in bed or can barely function. i've had days of feeling alone and crying. when my POTS hit, i was at a friend's house, doubled over on the floor of his bathroom. he offered to send me to the ER. i declined. (i shouldn't have.) the next day i had the same problems and really did end up in the ER. i texted him to let him know where i was and NOTHING. that was the beginning of the end. repeated texts/voicemails and no returns. it really, really hurt. we were very close. another friend who suffers from chron's takes the attitude of "it'll get better, i was in bed for 9 months so you will be fine one day." well, i'm happy for him, but it's been a year and a half for me, and medicine doesn't make me functional the way it does for him. also, a lot of his time spent not functioning was because he didn't have a diagnosis. once they figured it out, it's been uphill for him. like dana said, i recently defriended some folks on FB. i didn't want to, but the bottom line was i was tired of seeing their faces, their words and not to mention their friggin good times while most of them seem to have forgotten about me. i have a total of ONE friend from my previous life who actually calls me, so i have been really lonely. i want to surround myself with things that make me feel good, and being ignored on facebook just didn't feel good. the funny part is that even i am sick of my own self talking/thinking/worrying about dysautonomia. so i can understand why someone else would, too. i just think some people don't have the maturity to handle things when it hits the fan. and, as issie said earlier, that is NOT my personality at all. i tend to extend myself greatly in relationships, which usually result in them being being one-sided. i find it difficult to even get the support i need from my spouse, much less friends.

this is good advice. i'm tucking this away in my brain in case i ever apply. (hopefully i'll be able to retrieve the info. haha.)

this is my plan for now. staying on FMLA. (this is my 2nd round in the past 1.5 yrs!) applying for STD from my health insurance co. getting doc to sign paperwork (PLEASE GOD, don't let him put "deconditioning" on the form!) if and when i return to work, plan on requesting telecommuting under ADA with my HR department. my supervisor lets me work from home at her whim but gives me loads of grief about it. i want to ask for permanent telecommute status. will see my endo. will possibly follow up with a neuro. (my options locally are not super wonderful.) one last thing, renewing my handicap license. i think i'm writing this post for myself, lol. sometimes it's hard to sort out a plan for each detail.

i can't believe you went off of paxil cold turkey. it has the shortest half-life, which makes withdrawal the most difficult of all the SSRIs. whether my body is ready or not, i'm getting off of the Z. i can't have all these meds causing weight gain - especially since it's not hitting a plateau or stopping. it just keeps going! i'm already dizzy from the withdrawal, but i plan to perservere. all i've done so far is take a half a pill every other day, twice, and i'm already super dizzy. i googled SSRI + neuropathy and most of what came up was that it is used to treat neuropathy. mainly, i want to understand how neuropathy could be related to dysautonomia, especially in the presence of a possible sleep apnea dx. i don't know if any dr. can answer that for me. it may be dots i just have to connect myself. i don't know what made him say the blood vessels constrict very tightly or how he measured that. i think he was able to demonstrate it with one of the tests. i think it happens after the pooling. my body goes haywire trying to correct the pooling.

Prozac has a longer half-life than most SSRIs, so you should feel the effects/benefits a little later than with other SSRIs. The good thing is this one should be easier to wean from when you're ready.

Is POTS worse in the morning? Why would my waking HR be so high?

Woah. One of the things my dr. and I discussed extensively was sleep. The holter monitor showed a waking HR of 120, which he said was indicative of apnea. I wonder, though, if it's more of a POTS symptom than an apnea symptom. I am overweight now, but I've had sensations of forgetting to breathe before I got sick and gained weight. This seems like central sleep apnea to me, which would make sense in light of dysautonomia. I will be having a sleep study done soon.

It says " infectious agents such as the Epstein-Barr virus and vitamin D3 are able to alter the functions of the autonomic nervous system." sounds like they are saying D is an infectious agent?