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Faye, thank you. You're right about baby stepping, I just hate baby stepping backwards >_< Nothing to be done about it, though. Katybug, oh my gosh, thank you for remembering. It feels like a lifetime ago, but at the same time, when I had the episode during the interview last week, it felt like it had just happened. As much as I wanted a "real" career, I guess I just can't handle it now. And my cardiologist says that my heart rate gets so high that we need to do everything we can to keep it low and preserve it. Realistically, forcing myself to work full-time is going to elevate my heart rate all the time. I think now is the time to ease off, as much as I hate it. Yet I'm also at a point where I'm so tired of trying. I feel like, with this illness, we aren't even allowed to want anything for ourselves. Even though I'm functional on a daily level, doing chores or going to the grocery store, there are still huge limitations and it's making me incredibly depressed. I feel like I don't deserve the things I once wanted to work for. I have no motivation left. You're right, there is no right or wrong answer.. I am fortunate in that my parents are willing to let me live at home and even help me out with an apartment if I want, near their place, despite the fact that I'm now in my thirties. I am grateful for that and I'm trying to focus on the things I'm thankful for. JustaSpark, thanks so much for your comment and hugs Even though I've never met anyone from this forum and don't post/read every day, I feel lucky to be part of such a wonderful, supportive community. Thank you!

*hugs* You and me both. I wish I could tell you it gets better, and it might, but the fact is that it. just. *****. I hope your doctor is versed about dysautonomia, but try not to be too frustrated if he hasn't--it is still a "rare" illness, after all. I hate complaining about it, too, but lately it's hard on me as well. I'm right there with you! I want SOMETHING concrete and stable in my life! I know we need to "play the heck out of the hand we're dealt" but it's SO HARD some days! I'm comforting myself with the thought that spring will come soon. Sounds like you could use some sunshine as well. Hang in there. We are right here with you and rooting for you!

I also want to add that I can't tolerate beta blockers, and I've done Zoloft and Wellbutrin and do not like how they make me feel (especially Zoloft). Neither did a particularly good job of stopping these symptoms, anyway. I take a very low dose of Xanax on occasion, and it helps somewhat, but I don't want to take it regularly. I hate medications and am VERY sensitive to them.

Hi everyone, I posted a couple years back when I attempted to work full-time in a new office in a new city, and the environment had my HR up near 200 nearly the whole day, I was fighting not to faint, and the fluorescent lights and constant ambient noise were giving me adrenaline surges. I quit after one day because I knew I couldn't do it. I'm attempting again to do full-time office work, and have had some interviews and even an offer, but I am getting more and more depressed because I feel like I can't do it. During one interview, I had an episode and had to stop. I couldn't hide it. They told me I looked like I needed to lie down. My HR was through the roof, I was nauseous, and my vision was starting to go (pre-syncope). I am prone to anxiety, too, which just makes the adrenaline surges worse, which triggers the cascade of POTS symptoms. One of the issues is that I can't sit still in a crowded room (like in a business meeting) without getting a surge and feeling like I'm about to be sick to my stomach or faint. And it doesn't go away, even after I've been at a place for months. I'm so much better than I used to be, but it's incredibly difficult to juggle freelance, unreliable gigs, especially since I am divorced. Have others given up on full-time work? Has anyone been in this situation? I'm so sick of well-wishing friends giving me pep talks, because they just don't understand. I am depressed from all of this and have very little motivation or desire to even keep looking for something, even though I'd like a real career I guess I just need someone to listen.

I have seized while unconscious after fainting. It was documented during my TTT by the doctor and nurses. I am also prone to hypoxic? seizures. Not sure of the name, but there was a video of this floating around a little while ago. It's like a full-body tremor that comes and goes in waves while you're conscious.

I can't do caffeine hardly at all these days, either. I used to be ok with iced tea, but the other day it gave me crazy palpitations. Argh.

I haven't found anything that is a quick fix, although I would desperately like to. I take Xanax but only very occasionally because benzos scare me. It also makes me quite drowsy a few hours after taking it. I've tried essential oils (lavender) and I find the smell too strong. I don't ingest them, just use them as aromatherapy.

I agree with navyblue, start an exercise program. You ARE stronger than you think. It's going to be horrible and so difficult in the beginning and may make you feel worse in the short-term, but it is SO beneficial in the long run. Invest in a cheap HR monitor so you can see what's happening when you exercise and create a log of it. I also set a limit for myself--if my HR gets around 180, I slow down or stop exercising for a while until it comes down. If you walk outdoors, you should also look into getting a medical bracelet. I have a Road ID one just in case something should happen. For me, it's also helped to do muscle toning, not just cardio. Compression socks also help a lot with circulation and recovery after working out. It's definitely worth it to get a tilt table test. That seems to be the definitive test for most of us. It's how I was finally diagnosed after going through a barrage of tests and being misdiagnosed for years with anxiety. I am still not "normal," but I live a fairly normal life now after being all but bedridden 4.5 years ago. Hang in there!

Happy Turkey Day everyone!

RichGotsPots, I was not throwing up, just had extreme nausea that kept coming and going for a few hours. My HR was up and down during that time, but I didn't measure BP. That's interesting about chemical sensitivity--I am extremely sensitive to cigarette smoke, and all of the neighbors on my floor (there are 4 units on this floor) seem to smoke, and I can smell it in certain rooms in our apartment. I had attacks like this come in the middle of the night when I first got sick, but they mostly tapered off over the years. It probably is a combination of factors considering the life changes. I'm sorry to hear that you had a relapse after divorce, too It seems like the stress from life changes are just magnified for people like us. Not fun.

Yes. I was not satisfied with my cardio and I had some neurological issues. For example, when I cover one eye, my vision in the other eye gradually goes dark. I also struggle with a lot of brain fog issues and have a hard time with fluorescent lighting, so I thought I'd try a different approach. They did a brain scan to rule out a tumor (since I was showing symptoms) and did some memory testing. In the end, the treatment plan was similar to what my cardio had been doing, but the benefit with my neuro was that his wife coincidentally has POTS, so he really understood the fatigue and weird array of symptoms. He also respected my desire to take as little medication as possible and focus primarily on diet and exercise as treatment. I think it really comes down to the luck of the draw as to whether one type of doctor is better than another. It's definitely a good idea to find out if the neuro has experience with POTS, though.

Yes! You are definitely not alone. When I have an episode, my gut goes into "everybody out!" mode and I have to go a lot--loose stools and I have to urinate a LOT. I find that on bad POTS days I can't keep fluids in me.

angelloz, so sorry you had this reaction. Your description is not unlike what I have experienced at the dentist. Did they use non-epi local? Hang in there! Be gentle with yourself today. Lots of us have difficulty with stress and change, especially if it's accompanied by a dental procedure! Thinking of you

I love this idea. I'd definitely be interested in joining a Skype group. I don't do Second Life and don't know much about it, but I wouldn't mind trying it out for something like this. Not all of us live in places where there are lots of dysautonomia patients, so this would be great.

In general, I've been doing much better for the past 1.5 years after being nearly bedridden and fainting often when I was first diagnosed 4.5 years ago. I'm able to exercise and even jog a few miles, I can drive without worrying about passing out, and I even worked in an office part-time for over a year. However, last night I had a huge attack. It was like ones I had early in my diagnosis, which I haven't had in a very long time. I recently made some huge life changes--I'm at the tail end of a 2-year divorce process, and I moved to another state to move in with my boyfriend a month ago. Prior to that I had gotten pretty used to living alone, and I think what triggered the attack last night was being woken up by him putting his hand on my stomach. I suddenly freaked out and got a huge adrenaline surge and bad nausea. I went out to the living room and sat on the couch, but the nausea and rapid heart rate continued and I felt trapped and claustrophobic. I had to keep using the bathroom because everything suddenly went right through me. After half an hour or so, my heart calmed down somewhat, but I still felt weird. I spent the next 4 hours sleeping on and off on the couch. I'm wondering if all of the changes in my life are finally catching up to me. For the past few days I've felt nauseous and had little appetite, although this is the first full-blown attack I've had since 3 weeks ago when a dentist visit (getting a filling) triggered one. Does this seem like a POTS attack caused by panic? Does anyone else get these? It's so frustrating, and my boyfriend is amazing but I also feel pressure to be "normal" since we're new at living together and I do fear losing him, even though he has been really supportive and understanding so far. This morning, I just can't fake it, though. Usually I make breakfast for us, but I have zero appetite and couldn't bring myself to do anything but get a glass of water. He was super understanding and said he would just take some fruit to the office and told me to just rest and take it easy. He's known about my POTS and arrhythmia since we started talking 1.5 years ago, but I still worry.

I have horrible, horrible issues at the dentist, even with non-epi local anesthesia. Even that lasts 6+ hours for me and sends my heart rate through the roof, induces nausea, and gives me tremors. I've had terrible experiences with dentists in the past (fainting in the chair), so part of it may be psychological. I think the numb feeling makes me a bit panicky, which sets off the whole cascade of adrenaline surges and other symptoms. I dread going

I get horrible twitching in my calves. It seems to sometimes be induced by certain kind of exercise, especially movements like jogging in place. I also get extremely painful nocturnal leg cramps pretty regularly, although eating bananas and taking magnesium seems to help a bit.

I hope you're feeling better now. Maybe it's the alignment of the stars or something, because I'm having the worst day I've had in a very long while today. Not sure about gerd, but sitting with my knees up helps me sometimes. Also, wearing PC glasses that block blue light have helped with dizziness/wooziness caused by TV screens and computer monitors. Hang in there!

I did some searching, too, and had the same issue.

I had to quit my PhD in 2011 due to brain fog, excessive fatigue, and adrenaline surges and fainting spells. I worked part-time from home as a research assistant for several months, then added another part-time online job. These days I work three part-time jobs: one in an office 20 hours a week, and two from home/online. I tried to do a full-time office job last summer but failed miserably from the stress and fluorescent lighting. I've given up on my dream career of becoming a research professor because I have neither the mental capacity nor stamina to pursue it anymore. I'm overqualified and underpaid for all of the jobs I do now, but I am grateful that I have them. They still leave me feeling exhausted, but for the most part I'm able to handle it and I can rearrange my schedule to some extent when need be. The office job I do is in a law office. I think the legal field is a good option as long as it isn't in a high-stress firm (like litigation).

I haven't seen it before, but I'd love to read it if you manage to find it since it describes me

You're not crazy or a hypochondriac. I think we have to be our own biggest advocates, because who else is going to do it for us? I agree with everyone here, keep looking. It took me a few years to be diagnosed and several more years after that to finally find a doctor who listened to me and put me on a treatment plan that I like. It turns out that my doctor's wife has POTS, so I think I got extremely lucky in that regard because he's so personally familiar with the illness Prior to that, doctors had brushed off my concerns as anxiety and panic disorder. Well, sure, I have anxiety because I'm always worried I'm going to faint! I have also struggled a LOT with the middle-of-the-night attacks. For me, it's been a hallmark symptom. When I am less symptomatic, I don't get them as much or at all. You might even want to print out this thread when you go to a new doctor as a way of lending support to what you're saying. It's also worth it to stop the doctor if they're trying to rush along or brush you off and ask more questions. You are paying for a service and they need to hear you out. I'm also a very private person and very shy, so I understand how hard it can be. But trust me, it's worth it. I have come so far since finding a decent doctor. When I was first diagnosed, I had trouble getting out of bed at all for months. One thing that helps me is to prepare a list of things I want to discuss before the appointment. Don't bring tons of research, but mention a handful of specific things that indicate why you think your symptoms may be due to POTS. It's also been helpful for me to explicitly say that I am not typically an anxious person, I practice yoga, exercise, etc to deal with stress. If you don't like a doctor for ANY reason, do not be afraid to ditch them. Seriously. As patients, we need to feel comfortable and confident that we are receiving proper treatment. Best of luck. Keep us updated

Good morning everyone, My neuro recently changed my treatment. I'm completely off of Zoloft and Wellbutrin and am taking Mestinon. He started me on a low-dose beta blocker (metoprolol) last week. This is my fifth day on it, and I am as exhausted now as when I was first diagnosed years ago. I'm feeling awful and my blood pressure is bottoming out--90/60 even after vigorously cleaning the house for an hour. I also went to bed at 10 last night and got up at 7:30 this morning and am still feeling completely wiped out. I usually need a lot of sleep anyway, but not to that extent normally. I'm currently taking only 12.5 mg but it's having such a huge effect. Are these effects something that wears off? I'm also worried about keeping my BP that low. Honestly I was feeling "ok" (for a POTSie, that is) with just the Mestinon when it was my only med for several weeks. Do beta blockers work for you? Have you had these side effects?

Yes! I did this to work up to more strenuous exercise. The Wii is great, and so is doing circuits- jogging for 30 seconds, walking in place for 1-2 mins, etc. Whatever feels comfortable. I also love this indoor jogging video: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCEQyCkwAA&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DzBrAbpOt-WY&ei=EsIrVY-9KYqrgwT8noCoBQ&usg=AFQjCNF-o0f6NjIrYYeqZHX5a14IFdWhRQ&bvm=bv.90491159,d.eXY You can easily slow to a walk and tailor the workout to fit you And I like the instructor's style a lot.

I also get the non-epi injection. I don't know if it's just me, but it seems to take a while to wear off--longer than the dentist predicted. Maybe because of low blood volume? I had a severe reaction to the epi injection, and a moderate reaction to some topical numbing stuff they put on my gums and tongue before they did the injection. Now I get the non-epi shot only, no numbing beforehand. I seem to do ok with this.