MelissaCrystal

Well, it's pretty simple---business majors and people who don't have active jobs generally don't exercise, if you wanna look at statistics and see how little of the population actually work out. So it's pretty typical that it is the dancers and active people who notice they are not 'normal'. On the other hand though, I discovered I could no longer stand my condition when I became deconditioned from working on artwork indoors all day, everyday without getting up or being active. So it seems like it's easier to discover our conditions if we are not active at all or very active---maybe the in-between type of jobs make it harder to notice there's something wrong because they just go about their lives dealing with it and avoid being deconditioned or too active.

I found one of those at rite-aid--it was a little expensive but it sure is convenient isn't it? The one I have reads your HR continuously without having to press anything, it's really neat because I can see how much my HR fluctuates by the beat. I'm confused though, were you measuring your HR with the BP monitor? That must've been a pain---you do know how to measure it from your neck right? Count for 15 or 30 seconds and multiply it by 4 (if you do 15) or 2 (if you do 30). My doc said not to have the thing inflated on my arm too long because it can cause damage, plus it influences your BP and HR to have the thing inflated for too long.

She had a bunch to say about it because I really, really wanted it and was being somewhat stubborn about being talked out of it. It's just sort of her policy at her office not to give it to her patients because of lack of research on it and proven adverse effects on young patients. It might just have been my age that bugged her, I'm 22 and probably still growing. She also said there was absolutely no research on whether or not it causes breast cancer, which is important with birth controls because hormones are the lead cause of cancer period. Her biggest complaint though was that if I had an allergic reaction or some kind of health complication because of it, it takes 6 months for it to be completely out of your system. The birth control effects from it last 3 months, but it is detected in your system for 6 and will complicate any pregnancies for up to 18 months. If I were to get accidentally pregnant, the baby would be compromised no matter what because the progesterone is in your system for so long---most women are forced to get abortions or have premature babies that have health conditions. Most of the patients she gave it to gained a lot of weight and became really depressed with horrible mood swings for months on end, and she spent more time treating their side-effects than anything else. So I guess her experience with it was really bad, so I understand why she doesn't like it. If it were just some of her patients that this happened to, she said she'd be okay with it because it'd be like any other BC. But she said 90% of her patients had problems so that showed her it just wasn't ready for the market yet no matter how cool of an idea it was. She's frustrated that it has been around so long without having enough research on it or adjustments to it. It's really hard to say no to the convenience of the shot... I've been hearing so many good things about it from you guys. I'd love to have the shot. I'd definitely regret it though if I had an adverse effect to it---6 months, whew. I don't know. It's a tough decision---and I'd have to go to another doc for it unfortunately >< I wouldn't be able to hide it from my primary though lol

Prozac and Yasmin through periods---though my period has been malfunctioning as of late, not sure I can skip it like I wanted to. Seasonale made me bleed for 3 months straight and it looks like Yasmin is doing the same. I'm not saying this would happen to any of you, they're awesome birth controls, I just have a stubborn uterus I guess >< My doc refuses to give me Depo because she says all her patients have had health problems because of it, so I'm surprised to hear about it here! I would love to do Depo =(

Hah, I know exactly what you mean. My boyfriend and I had to promise each other not to ever talk online when we're upset with each other, no matter how small it is. Helped a lot! Things can go downhill fast when emotions are misinterpreted online, that's for sure.

Morgan, I hope you don't think I was referring to your post---I was just referring to negative comments with the jist of "I hate when posters say this", because I don't want -anyone- to be afraid of posting their feelings (about not wanting to work), especially when it isn't meant to offend anyone at all.

I definitely feel for you^ I've had a couple crashes at my last job. I have to be sooo careful not to contribute to the bad days. The hardest part about working is getting ready for work (showering, dressing, trying to do this all at a pace I can tolerate). I have the most trouble in the shower. I also get morning sickness every single morning, so I work from 4pm to 9pm every other day to try to avoid that. Seems like I'm always late though no matter how hard I try =x Such a hassle though, like everyone here, I'm so sick of struggling with whatever I do. I can't wait to find a good treatment =)

Awww! Your husband got to stay with you, that is so nice. They sound like a really nice organization (I don't know much about them). I'm glad to hear there are researchers out there that are working for us.

I'm a digital illustrator for book covers and magazines (I've done a Nature Magazine cover and inside content for a Stanford University study, stuff like that), although I get motion sickness when I'm on the computer for too long, so I can't make that my sole income. My second job is a really easy job---sitting for 5 hours educating people on gourmet/artisan chocolate from overseas. It's really slow, barely anyone comes in because the economy is so bad (our chocolate is extremely expensive). So I'm able to take lots of breaks, sit all the time, and eat anytime I want. It's perfect for dysautonomia. The bathroom is also like 4 feet away. I've been losing my voice though on the busy days (and by busy days, it's not actually busy, just busy for me) =x I'm usually exhausted after one 30 minute conversation. Doesn't happen too often though--but it should pick up around Christmas. Nervous about that! On really bad health days, I struggle, but I get through it. I'd be sitting at home anyway, might as well sit somewhere else and make money. I had to take a 3 month break though because my health went really bad. I would've preferred to have temp disability because I had to depend on my boyfriend's small paycheck. It was scary times. I didn't have any doctors who knew anything about dysautonomia at the time though, so disability was out of the question. It was hard to even get to a doctor let alone find one. I'm glad I'm able to get to work now, I've got a lot of debt to pay off. 80k from school, and 5 full credit-cards.

When you're one of those people who can barely stand to get out of bed, but can't qualify for disability, it's really unfair to tell them to stop wishing for disability, don't you think? I think this is really unfair. What if you, being definitely disabled in your own eyes, didn't qualify for disability for some reason? What if a doctor said "well, you can be a telecommuter, you've got your voice, so you can work from home." There are a lot of suffering people out there who are poor and have children to feed that wish they could qualify for disability because every day they feel like they are dying. I know that there are people who are suffering from worse, but it's just like saying what we're going through doesn't compare to those people in Africa. I hate statements like that. Everything is relative for -everyone-, and not everyone shares your view. I personally empathize with the people who wish they didn't have to work. I don't think it's fair to tell one kind of person to stop wishing for a better life for themselves just because another person doesn't like the fact that they didn't have control over their life change. For some people, not working IS a luxury. Not all disabled people are bitter about that, and I'm very sorry that you are. My dad is disabled and he is a very unhappy man, so I do understand. But I also know many other disabled people who enjoy their lives and are glad they never have to suffer through working again. This post isn't just directed at the original poster but some of the replies, because some of the statements were unfair to the non-disabled & suffering. I hope it doesn't offend anyone, but I just don't want people to feel guilty for sharing what they really want. We don't need to start a war between disabled and non-disabled just because either side is jealous of the other. It's silly to even talk about it. We are all mature, caring people here, and no one group needs to be singled out just because other suspects a phrase might have double-meaning. I understand that when you can no longer work, it means you simply can't work. But there are many people who are fired from jobs over and over because of their health problems, and who pass out and are in and out of the hospital because they continue to try and work. They can't work, but they have to, there is no choice for them either. I know that it may be the same exact case for people who aren't working, because life itself is work, but just think about it. Their lives would be better if they had a day to recover where they didn't have to worry about losing another job and being broke, risk being homeless, etc. It shouldn't make us feel guilty to wish out loud for these things, especially on these forums.

It says on the main Dinet site that not all POTS patients have a drop or a change in blood pressure upon standing. So no, not all people with POTS have BP issues.

An inner ear problem definitely can cause dizziness, but if it is the cause of the dizziness it is in no way related to pots---that's what's I've been told. It's either something related to the nervous system or something related to the inner ear, and if it's both, then you're really unlucky but it's very unlikely. I personally have a lot of issues with my ears because water likes to get stuck in them and cause infections. I've always been prone to them since I was a little baby. It's mostly in one ear. I really don't think it's related to POTS at all, and if it is, it's some very small and unusual connection like my ear swells in reaction to water and traps it or something, who knows. Most of my symptoms would be something for Dr. House to solve, as you'll find with many of our other unusual symptoms. Definitely go to an ear specialist and see if you can find out where the pain is coming from. I really don't think it's typical of POTS, but that doesn't mean it isn't typical for people -with- POTS. We have so many issues because we're like stacked cards (I don't know the saying, but take one away and other parts of us falls). So who knows. No one can really say what is related =) Too little research.

It makes it SO frustrating to try to explain to doctors exactly what is going on when it isn't consistent. That's usually when they suspect me of somatization (sp). I feel for you, for sure. I have not found any clues about what exactly causes the changes in my symptoms except that I need 10 hours of sleep and many many high protein meals throughout the day (and I have to avoid sugar).

Your bp goes up when you stand? Yeah that's funny. What does that feel like exactly? Because when I stand up I feel dizzy and my vision goes out, but when I sit down, I get this weird flushing feeling like there is pressure in my head. I'm wondering if my BP goes up when I sit down. It doesn't feel good. I'm really sorry you're struggling with your heart. I have to deal with it too, just like so many others here. Definitely keep trying to find a cardiologist who will pay attention to you, and forget the ones that think you're normal. There may be something they can prescribe you that will help a LOT to keep your heart stable. Beta blockers did that for me for a while, but they made my bp too low. I heard that there are many alternatives though, I just haven't been back to the cardiologist because she thinks most of my symptoms are due to anxiety, which isn't the case. Good luck! Just try to take it easy during your episodes =) More sleep always helps me. When I don't get 10 hours of sleep at night, my heart goes crazy during the day.

The thing that causes me the most energy loss is going up and down because my blood pressure drops and causes my system a lot of stress. My heart rate doesn't go insanely high but having it in the 90s at all times is tiring.

When I'm really exhausted I get the chills/nausea/diarrhea urge, but usually if I move at all, I throw up in my mouth, even when I'm not full. It isn't as bad as it sounds, but it's embarrassing and annoying, and burns my throat. =/

I get tonsillitis and my neck-glands swell up really really bad EVERY TIME I cry. The tonsil problem usually lasts 2 weeks, and it usually doesn't turn into a full blown head or chest cold, just the swelling happens. I'm not a huge crier, and I try to avoid because I know I'll get sick, but sometimes I just can't help it when I'm pmsing. My tonsils in my throat swell up which makes swallowing very painful and difficult, and my neck gets all swollen and angry usually on my right side. I just can't find any information about this on the internet and my doctors either don't believe me or really can't think of an explanation. Any creative thoughts on the subject? This is really annoying. I'm allergic to crying, pretty much. I'm trying to figure out ways to prevent the flare-up (other than trying not to cry), but I can't really think of anything. I try not to let drainage run down my throat but that's pretty much all I can think of that would irritate me. I'm so annoyed right now because I cried the other night and I know I'm going to have to put up with these swollen tonsils for a while. I've been going on job interviews, and I'm going to really hate going on more while I sound like I have something stuck in my throat. I'm trying to figure out a way to reverse the swelling. I've had doctors suggest to me to take my tonsils out, but I've had just as many say that I shouldn't. I'd rather not because I have trouble with anesthesia so the procedure would be difficult. Btw, it's DEFINITELY the crying that triggers this. I've got it down to a science, trust me. Oy. Anyone else have anything similar happen to them? I'm tired of being a strange case, as I'm sure all of you are.

Does this prove that POTS is genetic or do you have something that causes POTS that is also genetic, like Familial Dysautonomia? I'm just curious. I'd hate to pass this on to my children if I have any. Edit: I read that you have Autonomic Nerve Dysfunction, is that genetic? I guess I can go look it up. How unfortunate =( I'm so sorry this has happened =( I hope there is a cure someday or I hope that you find what is specifically causing this in you and your son if you haven't already. I hope it isn't permanent. And if it is, at least he has you, who has experience with it. He's lucky to have you =/

=( You're on a lot of meds, maybe you should go in to get them adjusted to either give you a boost in mood or stamina? I hope you are seeing an actual specialist, because a lot of people struggle more than they have to just because they're not seeing the right doctor. I'm so sorry you're so down. I hope we can all get through this and enjoy life as much as possible =(

The skin and muscle on my butt and legs sometimes fall asleep while sitting. Sometimes weird things fall asleep even when I feel like I wasn't putting pressure on it. There's a distinct difference in feeling when things are actually numbed and when things are asleep (think as if someone administered anesthetic to the area). Hopefully you can tell the difference. If you don't think you can, see a neurologist to give you a checkup to make sure you aren't developing nerve damage anywhere. If the skin was just temporarily asleep and now it's back to normal, I don't think it's much to worry about because it's not permanent. You may have a blood flow problem though so if it happens too often, get it checked out to make sure it's not a clot. That's kind of an odd place to get a clot though...I'm not sure I'd worry unless you're a diabetic or have blood issues. You should probably make sure you don't have those, but I'm sure you're working on that anyway. I've had my face fall asleep before when I slept on my hand. Do you think you were sleeping on your hand on some part of your head or neck? That could definitely cause it.

A lot of times I try and talk myself into going to the ER but I don't because I always regret it. They usually call me a hypochondriac pretty much, send me home with a pain killer for stress, and then give me a large hospital bill. Always call your doctors though, and if you start getting the signs of a heart attack, rush to the hosp asap. Take your blood pressure also and make sure it doesn't get too low. Eat and drink a bunch to keep it up while you're feeling icky. Make sure to relax and try not to talk so much or breathe too hard.

I get it only in my left eye socket. So annoying =(

None of my doctors are too interested in looking for the cause because some of them don't realize how many things can cause POTS. There are tons of curable causes for POTS and I want to make sure mine isn't reversible before I start covering up the evidence with treatments. Deficiencies can cause POTS, Adrenal issues can cause it, all kinds of stuff that is directly treatable (rather than treating the symptoms) and curable with surgery or corrections. I want to make sure I have no options before I start treating the symptoms. My docs are more interested in doing it the easy way though.

I've learned to say to doctors, "trust me, I know when I'm feeling anxious, because with anxiety added on I'd be feeling 100x worse. I feel like **** right now but it's not anxiety." Tired of doctors saying it's all anxiety and it's "crazy what anxiety can do to the body." Yeah, it is crazy what it does when I'm having a panic attack, but I know when I am and when I'm not having one. Grr!

I've tried so many things with my eyes, but yeah, still get dizzy and nauseous on my comp. Some days it is worse than others. This is the biggest thing preventing me from graduating college =(