MelissaCrystal

Yeah!!!! lol I don't know how to explain that either. I mean, I get a lot of equilibrium problems...but it's as if my whole balance is tilted. Sometimes my head just wants to fall that way, too, so it can be dangerous. I don't know what causes this...dunno how common it is. Is it just a part of being lightheaded or dizzy? Dunno... We talking about the same thing? Like when you get up from sitting sometimes it's like the world is tilted a bit, and it's disorienting?

I go to two diff eye docs but they just would rather blame it on my mysterious nervous system lol It's a shame. I might shop around for another eye doc, just hopefully I can get some kind of referral. Funny thing is, usually when I get a headache, it's intense behind that eye. I've always hated that eye... it gets tired easily, and the bones around it ache. I always seem to get a headache behind that eye. In high school, I'd always ask my mother if I could just get the eye removed cause I'd be fine with wearing a patch lol It's a different shape than my other eye cause of muscle issues, so I've always hated it. Under a black light, the skin around it is all dark and damaged. I have to put makeup around it a bit to make it look like it isn't bruised. Usually with my glasses, people can't tell at all...but I can. I hate pictures because of that eye. I think you've convinced me to find another doc though, there has to be something with that freakin' eye beyond the leakage. It'd be nice to have it fixed before it looks older and more damaged with age.

I used to get pure anxiety right after going to bed at night, and it's very similar to what you described! I don't get it anymore though because I've cut so much stress out of my life. Definitely took a long time to get to that point though, and it could come back randomly if I have something to do the next day that I'm a bit up tight about.

There are a lot of normal people who just faint easily to their reactions to pain---I've noticed that when I'm in pain, my pulse pressure narrows...which makes it hard to find my pulse. I'm sure the response is exaggerated in people like us, but I wonder if the same thing happens to normal people? Dunno.

Isn't it eerie? I always had a feeling that all the numerous things wrong with me (that no one else I knew could relate to) were somehow connected. I remember running across some info that producing not enough tears or too many tears is connected to nervous system dysfunction though. I'm so upset by my left eye though, I empathize about the makeup!! Every single morning it frustrates me.

Oh btw, today I soaked my eye for a long time with warm water, and I didn't put any makeup on, and it seems to have subsided. Dunno if it's a coincidence or if soaking it worked. I go to work tomorrow so we'll see if it starts up again.

Eye doc just said I have a defective tear duct. Different medications and coffee and stuff sometimes make the opposite happen---that eye has HORRIBLE chronic dry eye. There are two kinds of lubricants that the eye produces supposedly, the kind that actually lubricates it, and the tears that wash away stuff. Well my eye doesn't produce enough lubricant, and it leaks tears. The doc has nothing to offer me but a referral to an eye surgeon, but I don't have the money and that sounds terrifying lol He doesn't even know if repairing it will work, because there's no way of knowing if it is linked to my Dysautonomia. It's an annoying mystery...

Yeah, it really is a shame. Whenever I laugh too hard or cry, it starts it and doesn't stop for days at a time. Blehhh

Hey, I've been managing my symptoms pretty well these days but I still have ones that flare up and annoy me really bad. The nausea is still there. But one that really worries me (because I'm vain and care about the way I look lol) is my left eye leaking from the outer edge. This has been going on since I was a little girl, and whenever it flares up it is just horrible. The skin has permanent damage---it's brown, wrinkled, and my eye is a bit droopy there. It's been leaking non-stop tears for about 2 weeks now and it's raw and terrible. Lots of irritation and the pain makes my eye water even more than it already is. It has to be from all the salt or something in the tears. Anyway, I was wondering if you guys had an suggestions, my doctors don't. This is really annoying =/ I wish I could make it stop leaking or somehow protect the skin from damaging further.

Unfortunately most of the docs I've gone to just hand me beta-blockers for tachycardia and anti-anxiety pills because they think anxiety is causing all my "symptoms". Most don't know about POTS or Dysautonomia and they think I'm a hypochondriac for daring to have researched it on the net before-hand. UCSF was nice to me, but unfortunately they don't know a lot about it. At least I couldn't find a doc there that did---if anyone knows one, lemme know. I went to Dr. Friday at Stanford and it was completely worth the wait. And waiting is all I did...bed ridden and unemployed, being taken care of by someone until my appointment. Now I'm working and living pretty normal, managing my horrible daily symptoms like a pro and not having it impact me too greatly. Definitely worth it.

Everyone works differently but I thought I'd add my experience. Prozac is the only one that seems to work a bit, and I haven't ever had withdrawals from it. Paxil didn't seem to do anything for me, even on a higher dose, and it took me months and months to taper off it, and even the smallest taper would cause horrible withdrawals that left me bed ridden. So I stick with Prozac. Lexapro and the ones in that family were pretty benign to me, but they didn't seem to work as well as Prozac.

I just recently became single and moved into my own place, and it has been HARD. Sometimes I simply cannot take care of myself. But my strategy is to plan ahead---for the worst. Always have snacks around, meals pre-prepared while I'm feeling well, and just everything really easy to access and use. Lots of routine and planning involved in living on my own. If I go outside of routine, I travel into danger zone, but I've been trying to push myself so that I can be stronger for when that happens. So far I haven't had to call my ex for help. Though.....I haven't taken out the trash since I moved in. Kind of scared. I already hurt myself the other day picking something [not heavy] up. I live in SF Bay Area so I rely on pub transit. I'm glad, because every day after work there is no way I'd be able to drive myself home. I turn into a zombie after working---well, maybe even during. It's tough...life is way too hard...but I do it. And when I get home I pamper myself as if I'm at a luxury spa, and it makes it all worth it. It's an okay routine for me...I feel pretty good about it. Also, I cannot schedule two things in one day...ever. If I work, I need at least 3 hours before I work to get ready and feeling good, and then 3 hours afterwards to recover. Usually if I work, I don't do anything else that day. If it's something else I've got planned, maybe I'll see friends (if I have any at the time) in the evening, but otherwise I take it easy to prepare for work the next day. I work every other day to give myself recovery days. Unfortunately, it doesn't add up financially, but I'm still working on figuring out how to make more money with my disability... Illustration is my career, but man..freelance isn't looking too good in this economy.

I had no clue! Been having some hormonal weirdness lately so thanks for letting me know! I've been bleeding every day, for over 3 months. It's light, but really annoying because I can't figure out how to make it stop. Me and my doc are working on it.

I wasn't born early, I was healthy, fat, happy, and curious about the world. The only odd things about baby-me, was that I slept through night, never cried, was never unhappy, always full of lots of energy. I slept a lot though, like a good baby....or perhaps a really exhausted baby =p

I bet my doctor hates me---I've cancelled every morning appointment I've had with her for the past 2 years. I bet every time she sees that I've scheduled a "10am", she doesn't count on really seeing me. It's embarrassing.

I get the same exact thing but my doc has never caught me with abnormal blood sugar readings. All I can think of is that it's a BP issue or just that we used up all our resources and need more! I dunno! I definitely get "hungry" after exercising though...like I've been starving for weeks and can barely stand up without eating first. I drink a lot of water all throughout, but the hunger pains come and I feel SO much better after eating protein. Protein before you work out might prevent this from being so severe. It's the only thing that helps me---specifically chicken.

I definitely a sweat a lot with it on lol Haven't found the best solution to that, honestly---I work in a place with no air conditioning, but it's in SF so it isn't AS bad.... still hard ;p

Hey guys, It's been a while since I posted---going through a life change. I'm moving this weekend into my own place, I started working again, I lost 15 lbs, all good things but it's been pretty crazy! The one thing that makes me relapse is going outside the diet I created for myself. I've been eating roasted chicken and some veggies for most of my meals (small meals, frequent), and I've been having more energy and not as many digestive issues. As soon as I go outside that diet, I crash and get tachycardia, low BP, and just have trouble for the rest of the day. Because of the chicken, I've been able to start walking and being on my feet more often---helped me lose 15lbs! That's a huuuge accomplishment for me =) I feel great and I cannot believe that I'm saying that I may actually be happy right now and for the most part healthy. It's funny though that one meal can mess me up for two days though. I have to be SO strict about when I eat, how much I eat, and what I eat. Also, I can't drink anything but water or else my system gets messed up. Anyway, it may just be something that is working for ME, or perhaps I am just in a period of time where my nervous system is able to regulate pretty well. Who knows, maybe I'll relapse again soon lol I'm hoping not though! I'm going to keep this up and keep active and hopefully I won't have to go start trying all sorts of meds again. Another thing I've been keeping up is wearing my compression wear every single day. I really do think it helps. The first month of wearing it made me feel like it was actually worse for me----my legs seemed to pool with blood and I felt a little suffocated. Reminded me of when I was getting used to beta blockers lol But after a while, maybe it got stretched out, maybe I got thinner, but it seems to do its job now. When I walk around when it's off, I seem to be more short of breath----when it's on, I feel secure and slightly higher in BP where it counts. Anywho, thought I'd share these tips for you guys if any of you are curious what works for some people =) It's taken me a long time to figure this out about myself, and I might end up having to adjust my lifestyle when it becomes a little more busy, but it seems to be working for my short days! (I get so tired after going out ;p, but it's great, I've been sleeping!) Another tip is that I always have a rest day after exhausting myself. I just end up relapsing if I push myself two days in a row. If I have one big day of shopping or something, I make sure to do only a little bit of activity the next day. Also, my work days are spread far apart and the day after work I sort of just take care of myself and a tiny bit of housework (which is enough activity to work me out) like laundry. When stress is added to the mix, all this is thrown out the window though unfortunately. Just a tiny bit causes horrible nausea, and I still haven't found a cure for that. I still get morning sickness, but I eat chicken, soak in the bath for 30 minutes, and then I'm great about 2 hours later =) I've also noticed that I felt my best when I wasn't on birth control while doing this whole diet+activity thing. When I started it again, I started having issues again. I'm going to go to the doc soon about it, cause I haven't had a period in 5 months (not preg) and I'm having cramps for like 2 weeks straight. One more thing: I've been checked thoroughly for digestive system-related illnesses and my tract is normal. But I don't know if you guys noticed how we rely on our intake of food and water SO much to feel good. I think everyone should experiment with strict diets to figure out what their bodies like the most. I still have all my little dysautonomia quirks, but they're -manageable- when I'm eating right, which I think is the important part! It's a huge step for me, because just 4 months ago I hadn't gone out of the house for months and was barely able to walk without feeling like death. Definitely hit rock bottom and was extremely depressed. Got a treadmill, started eating only chicken, then graduated to shopping for clothes, and then was able to go back to work (two days a week but that's something)! Life is still very hard, but I'm doing it =)

Just have all your records and I think she'll know what course to take! She'll talk a LOT with you about everything and go over how you feel, so study up on how to describe your day and how you feel in certain situations =) I can't really think of anything else. Tell her comparisons of how you feel on certain meds....diet can be a good thing to discuss cause that can give her some clues on how you feel after certain meals.. Hmm. I'm sure you'll be fine! I'm excited for ya!

I haven't found anything that corrects the morning time horrible-ness, but I've just found things to prevent it from being so severe. At least 10 hours of sleep seems to help, eating right away in the morning even if I'm not hungry (protein), taking ginger pills for the nausea (barely works, but sometimes cuts the edge just slightly, have to take like 5), and taking a relaxing bath before my shower (or making sure to shower the night before). Mornings are so rough... one of the main reasons it's so hard for me to work.

That's the type of nausea I usually get, and it seems to come and go on a monthly basis. Ginger pills sometimes help in large amounts, but other than that, I just have to get extra sleep and be really careful with my eyes or getting motion sickness.

Definitely have to avoid deconditioning, as we're sooo much worse when that happens and get a lot more symptoms if we let ourselves go. So at least walking each day and keeping up and about can prevent that from happening. Standing is soooo hard, and it doesn't seem to be getting easier for me to do as I'm exercising, but I think I've been having more and more good days due to my efforts.

Well, luckily there is stuff here in the bay area, but the competition is bad---that's the problem. If you see a new listing you gotta jump on it. The way I got my jobs is by pursuing a place that I can qualify for. I had worked in chocolate jobs before, so I aimed for another chocolate-related job in the area. I pursued a company that wasn't hiring and they met with me, liked me a lot, and I got the job! No competition =) I didn't bring up at all that I had POTS but I made sure to find out before hand what the job was like---if they let us sit ect. I was lucky that it was my thing. I guess my other jobs I got through referral. But none of them are in business anymore so I can't really help you out =( But I'll keep my eyes/ears open for ya.

Our bodies are SO sensitive that it gets dependent on drugs really easily. At least in my experience. It took me 3 months of shaving down pills to get off something without withdrawing and feeling like I should be in the hospital. I seriously had to shave it down in order to not experience horrible symptoms. So of course the reverse is true for a lot of drugs. Not really sedatives (for me) but any kind of upper or birth control or anything that messes with my levels tends to make me react in weird ways.

This is so hard for me because I was commuting every day by bus and underground train (BART) and would always need to sit or else I'd be standing for sometimes 20 minutes. It's always packed. I've sat on the floor before, and people looked at me and I told them "Sorry, I have a heart condition" and then smiled and gave them a sort of "oh well" kind of laugh. This is so embarrassing for me when I get a seat and people expect me to give it up because someone older than me comes along. I'm 22, healthy looking, so it's hard. I've given in before and said, "Oh gosh, I'd offer my seat but I have a heart condition and I'm nauseous right now, is there another seat for me somewhere...?" And I sort of look around, looking like there has to be some free seat somewhere I can switch to, and someone else usually gives in and gets up for me. I try to be sweet about it. There's just no way I can stand for that long, and I hate actually asking for a seat. I always sit on the floor before I ask for someone else's seat. It makes me look so stupid, but I don't care anymore. I usually just giggle about it so people think I'm cute and not ashamed or something rather than a weirdo or embarrassed about it.