Anoj

So the nurse who was actually in the room doing the test with the Dr. Assistant, called me as well! She was very nice, and talked to me for a good 15mins. She said that although I didn't meet the 30 BPM increase, I did (obviously) meet the 120 BPM in the first 10 mins., and it was that way the entire test. She said if it were up to her, she would definitely give me the diagnosis for POTS, and has no doubt that's what going on with me, since I also have the symptoms. She said that the Dr. just might go ahead a diagnose POTS from what was shown during the TTT, and she thinks I should go ahead and keep that appt. to see what he says. Of course she would say that, but she did seem personal at the same time.

I think I will keep that appt, just to see what happens, and I will also make an appt. with another Dr. in Denver, if I get "lucky" with the local, I can always cancel the other, since it will be scheduled pretty far out anyhow.

sounds like you have a good plan in place. sometimes it takes that to help us relax. one of the biggest challenges to me during this whole process has been determining my next move. it's not as easy as it seems, and 1 million variables can go through your head. if this, then that. if that, then this. on and on.

i feel like you need to be very kind to yourself! just remember that you're doing the best you can. in my personal experience, this journey can be long. it took me almost 2 years to get the answers i needed, and even those still are not complete. i still wonder if i will end up at a place like vanderbilt one of these days, but until then i'm just working with what i got.

i remember people telling me to just go to vandy & get it over with (with good intention). i wasn't ready for the upheaval then. still not. you'll do what you need to do when the time is right. you might get sick and tired of being sick and tired at some point and go somewhere else eventually. or, maybe your symptoms will improve and you won't need it. wouldn't that be nice!

hang in there!

we can take this convo to PM if you'd like, but man i can relate to you. i wish i could work 2 days a week! i hate that we need money. i wish my hubbie made 50% more or i won the lottery. life would be so much simpler if we could just focus on taking care of ourselves. it's my first day back at work (from home - ha), and already i'm so foggy i can't think straight, and i skipped physical therapy. i just can't seem to do everything. :wacko: :wacko:

that's the crazy thing about this illness. when i'm not working, i look fine because all i do is sleep and exercise. but when i'm working (pushing myself), i'm symptomatic. i imagine trying to explain that to a disability judge. hrmm..

what's crazy to me is that if i scheduled my life around my sleep and work, i wouldn't have much time for anything else. how are you supposed to get 10+ hours of sleep and hold down a full-time job? get up, work, sleep. get up, work, sleep. how do you do laundry, cook, etc.? much less have any fun. i'm so sleepy today. sorry if i'm not making any sense.

p.s. i really don't like taking medication. i'd hate to have to add another one to the mix.

BP was only high on HUTT (or during an episode). during normal activities, it's normal to low.

i can't wait until someone answers you - this is all ME!!!!! i'm struggling to keep my eyes open right now because i only got 7 hrs last night. working from home and can barely hack it today. i need between 9-12 hours. fun stuff. my doc wants me to do a sleep study. not sure if that will help. even if i have apnea, i doubt my problems are becs of that.

i'm like you, i have major problems with side effects to medications, including coffee or any stimulant, so i don't know what to take when i feel like this. the only answer is SLEEP.

is it possible for you to go somewhere else? i know that would be a PITA, but it sounds like you might need a second opinion? i don't know what's available in your area health-care wise or if your insurance would cover it, but sometimes fooling with people who aren't knowledgeable is a waste of time. whatever you end up doing, good luck!

well, for the first tilt in 2010 i was on nothing (low BP). then recently i had been on florinef and midodrine, but i got off of the meds before the TTT. now i'm on a beta blocker - i seem to have adjusted to it pretty well! the hyper symptoms are much better, but i still deal with the pooling.

The midodrine will increase your blood pressure - so maybe, it wasn't completely out of your system when you had the last TTT. Depending on which beta your on - wonder if it affects NE levels. Are yours high? Pooling is a problem for many of us and - my doc just recently had me go back to wearing compression - despite it making my neuropathies worse. But, it does make my legs feel some better - but, it will also increase my blood pressure. (I don't need for my bp to be higher - I have high bp's.) But, the constriction on my feet and legs - make them more numb - so it presses on the small nerves on the surface more and makes the neuropathy worse. Nurse, told me to just go to a lighter weight compression and see if I can tolerate that.

What did the florinef and midodrine do for you? Did you think they helped?

Issie

i wondered myself if the meds were affecting my BP. i don't know if midodrine/florinef increase NE, but mine were definitely elevated on HUTT. i felt better on the mid/flor combo but am on betaxolol only now. he said not to take the midodrine becs my blood vessels were constricting.

i'm glad you said something about the compression stockings & neuropathy. i wouldn't have known that. i am learning more about my own neuropathy.

Anyone try this drug? My endo wants to put me on it to see if it helps pooling. This is after a recent test showing possible early peripheral autonomic neuropathy in my feet. does anyone think that improving neuropathy would improve pooling? i like that he's willing to try. he wants me on it for a month to see what will happen.

my a1c levels came out ok (no diabetes). i was glad that he acknowledged you can have neuropathy without diabetes.

i'm also having a nerve conduction test (EMG) by a neurologist next week. i don't know what they will do with the information. for people with POTS, how can this information help?

thanks!

lawyer said to go see him if they fired me or gave me a PIP. until then,they HAVE to accommodate me. he also advised me to put up with their nonsense and just do what they tell me. my job should be secure.

it's crazy how job security isn't enough to make me want to stay. the treatment is unbearable at times. i don't know how to cope with this. i've broached the subject with my counselor numerous times and she hasn't helped much. blah.

well, for the first tilt in 2010 i was on nothing (low BP). then recently i had been on florinef and midodrine, but i got off of the meds before the TTT. now i'm on a beta blocker - i seem to have adjusted to it pretty well! the hyper symptoms are much better, but i still deal with the pooling.

amber, i just wanted to offer support and say i understand your frustrations. my personal journey with POTS/dysautonomia has been a long one (probably like many here). my first TTT didn't show much either, other than i near fainted and my BP dropped. the cardio was very well-meaning, but his knowledge was limited. he treated me under certain assumptions for over a year until i found my present doctor, who performed another TTT and gave me a better diagnosis, nearly 2 years later. i just wanted to say hang in there. i truly understand how frustrating it is and want you to know that sometimes it takes a little more time with the journey, and not to give up. keep searching for answers!

pOTS is very specific and not easy to treat even by really smart docs that can almost cure everything else. Regardless of how kind the offer, definitely don't accept any treatment that you dont understamd or are not comfortable with.

this. the fact that jen you are even asking probably means you are not comfortable with this? i agree with the above statement. it's hard enough to get the appropriate "specialists" to treat you properly or understand. it's funny, i went into GNC earlier for something and the guy behind the counter swore i needed to talk to his friend about my problems because he knows a lot. i had to chuckle.

on the other hand, my aunt swears by holistic medicine. she sees a holistic chiro and sends her daughter (who has POTS). she swears it is helping her daughter. however, this chiro is very well-versed in holistic medicine, so it seems like unique way to approach medicine. i tend to go with gut responses in these types of situations.

if i had a nickle for every time i said the word "stuck." i can really relate to how you feel. i relate my life to a square peg/round hole, where things just aren't aligned. in fact, before i got sick, things were VERY misaligned, and i blame my illness on the stress i was under and the fact that i was having repeated "stuck" type of problems. this may be a controversial statement, but for me, i absolutely know that personal stress led to my illness.

i have my own relationship problems. one of those everything looks perfect from the outside, but what goes on behind closed doors is a lot of nothing. lack of empathy, lack of intimacy, lack of trust, lack of honesty, etc. you asked how do you cope? after many, many failed attempts at marriage counseling and personal counseling, i've just kind of given up. i know that's maybe not the answer to hear ... but in my case, a lot of my stress came from TRYING and TRYING and TRYING to make things work. now that i've given up, i save some precious energy. it's not a great solution, but it has to do for me, for now. this results in me feeling empty and lonely. it makes it worse when friendships suffer as well. i am reminded of the recent "friendships being affected" thread. it's enough to lack at home, another to lack socially and another to lack financially and with employment (see my thread on my work issues).

we go through a lot - more than what i think the people in our lives could handle! i get tired of always being strong and not being able to lean on anyone. this forum is awesome for that, though. and in my case, my child brings me great joy, so i just wait for him to walk into the room to feel better.

I know how frustrating it can be. My boss, the owner of our company, did not believe his employees should take sick days. So my became very difficult when either my daughter or I was sick. I was able to complete some of my work from home, but the owner of the company wanted me available at any time for his questions or impromptu meetings.

Just remember to keep all of your communication with your employer positive and professional. I know that is difficult given the circumstances, but you do not want to give them any reason to state why your arrangement from home isn't working.

I know it is a hassle, but the more organized you are for your lawyer, the more likely he/she will be able to determine if you have a case and if you have damages.

I hope everything will work out well for you. Stress is the last thing you need.

Trish

positive and professional ... hmm ... well, i've already screwed that up. i got so tired of being bullied that i stood up to myself recently, and i didn't hold back. i'm kind of embarrassed, but at the same time, i was pushed and pushed and pushed ... and in the end, i think it's why i was given this accommodation. at some point i had to put my foot down, and emotionally the way i was feeling at the time was - i didn't really CARE what happened. i just needed to let them know that something was going to change.

as for the lawyer, i wrote down a very detailed timeline, and i am meeting with him TOMORROW. i'm so excited! i want to know whether i have the rights i think i do, or whether i should go back kissing their butt.

On the cup half full side, that's great that you won't have to worry about maintaining your salary for 2 months! I am so glad you got have an appointment with the employment lawyer for further advice! Maybe your employer is attempting to show "reasonable accommodations" before they do something. I hope the lawyer gives you good guidance!

As far as me, I guess I was still in some form of denial. I had worked at the hospital for many, many years. I always took out and paid for the best insurance... health, disability, life available. I did that in case I ever needed them, but instead of going on short term disability at that point, I was convinced if I just "took it easy" "had less stress in my life" etc etc etc I'd get "my life back". It was the whole....try harder, work through it attitude. Of course, POTS doesn't not work that way. For me, I just had the same bad symptoms of POTS at a different (albeit less stressful) job that also did not have the short term and long term disability I had previously had. If I had known then what I know now, I would have viewed filing short term disability as something I could do and then go off of if I got better. Instead, I viewed it as giving up on getting better and that was crazy!

what do you mean "before they do something," like fire me? make a case against me and show that they have been so nice to me and tried everything to make it work? that's scary.

i hear what you're saying about the less stressful job. i'm in exactly that position right now, where i applied for a less stressful job. after reading your post, i'm going to have to consider it very very hard if it comes through.

When my son developed POTS, the doctors assumed that he was vasodilated. So they prescribed medications that would constrict his blood vessels and all those medications made him feel worse. At the time I had no idea that there were different types of POTS. Three years later he participated in a clinical study on the effect of nitric oxide on POTS. That's when we realized that he was vasoconstricted and falls in the category of "low flow" POTS. He needs medications to dilate, not constrict his blood vessels. He had been trying all the wrong medications for 3 years. So for Dan, learning what type of POTS he had made all the difference. Unfortunately most people dont' have access to the type of testing Dan had.

i agree with this post! i have a similar story ... found out i was hyper recently, and my meds have changed.

ladies ... do you know if the type of POTS change over time? mine started with low BPs and now i've ended up with BP spikes. this changed over the course of about a year in a half. first TTT BP was low (summer 2010). second TTT BP shot thru the roof (April 2012).

Very good info in this thread. I'm so happy for this board.

update: they have agreed to let me work from home for a 2-month trial period. at that time they will re-assess. i'm aggravated about the trial period - i've already more than proven my ability to get my work done at home! i have worked from home half the time during the past year and a half! at this point i guess it's a victory, but it's a hollow one because i had to stir the pot to get it, and now i feel that when i return, i will be in big trouble, or treated badly. (what's new.) i wish my STD had come through before this time period, but i'm still awaiting the doctor to send the friggin paperwork so they can make a decision. if i were on it, i might be more inclined to just stay on it and let the job go.

i will definitely have to start writing things down. i do have some things, but i'd have to go through mountains of paperwork to sort it all out. guess i'll do that before my appt with the lawyer, which is tuesday afternoon!

you know what's weird ... before the 48-hour holter, i never noticed that my heart rate was high. however, the holter confirmed it. i suppose i have been so used to mine being high for so long that i don't know what normal is anymore? does anyone else feel this way? if i don't feel good, i can't always articulate why. or, i think i have adjusted to my situation throughout the years by just not moving around much without knowing why i felt better that way.

i don't think my HR gets as high as those on this board. highest is around 120; average is around 100.

if you go to the ER with high HR, what do they do for you?

my hemoglobin a1c came back "normal" at 5.4 with blood sugar averaging 108. range is <6 and <120. so, i don't have diabetes! maybe that will make him understand that neuropathy isn't necessarily related to diabetes? although my levels are a bit on the high range of the scale.

Oh.... the reason I suggested getting advice from an attorney was not with the intention to sue, it was so that you would know your rights under your state law. If you have the opportunity for short-term and then long term disability at your present company would your income be more than working part-time at a new company? I made a HUGE mistake not doing that when I got sick when I worked as a hospital executive where the short and long term disability benefits were top notch. I chose instead to take a "less stressful" job and push on.... big mistake in my situation and every situation is different. I just wanted to share my experience so that you weighed all options.

I am so sorry you are going through all this!!

thank you so much for your response. i have an appt. with a laywer next week!

i also liked hearing your feedback concerning taking a less stressful part-time job. yes, the insurance i have would be just as good financially as the less stressful part-time job. i would like to remain employed so that there is no gap on my resume, but in my heart i know it would be a struggle even to do that. would you mind telling me what happened in your situation when you went to work part-time? if you'd like to PM me, that would be fine.

i just really, really appreciate you guys sharing your experiences with me. of course, i understand that these decisions are mine to make, but it really does help hearing how others with this condition are dealing with things from a work/financial perspective.

thank you so much!

I have read several articles that postulate that the fatigue is as central as the nervous system itself. Our nervous system is hypersensitive to pain and fatigue, so that what a "normal" person would feel/respond to is bone-crushing for us. We also cannot marshall the correct bodily responses to recover properly since our bodies are always in "crisis"/fight or flight mode. There is also a non-restorative sleep aspect to dysautomia/POTS, where even if we slept all day it isn't the same as eight hours of "normal" sleep. I know that a great deal of my fatigue is from pain and circadian rhythm disruption. I am not as tired when I can sleep to my own schedule.

it's interesting that you said that about sleep. my doc wants me to have a sleep study. i'm kind of annoyed that he doesn't seem to relate all of these things together. can you explain why people with POTS have bad sleep? you can PM me if necessary.

please keep us posted.

so does anyone know if it is possible to have more than one type of POTS? it seems as though i have a combo of partial dysautonomic and hyper ???

i'm looking at this article for the different types: http://www.dynakids.org/Documents/pots_article3.pdf

i really hope you get it. i just want to say good luck and i totally relate to the emotional toll this must be taking on you. HUGS!