MelissaCrystal

I have to slowly, and I mean slowly, taper off every drug I take because I'm so sensitive as well. I remember how frustrated I'd get when I'd start withdrawing only an hour after I've missed my dose. So scary, how it feels like you're dying during that. It took me 6 months to get off one of the anti-anxieties I was on, and even longer to get off the beta blocker. With both, the withdrawal symptoms differed somewhat, but it definitely triggers the biggest POTS-flare-ups I've ever had. It was such a horrible experience. Now I'm sooo careful about what I need and don't need because I'm afraid of withdrawal. Even things that I'm not supposed to be addicted to are hard to get off of because my body feels a change. I bleed whenever I skip my birth control for just a day! That isn't supposed to happen either, and it frustrates all my doctors, as does all of these reactions. I hope you don't take it out on Florinef or other drugs that can do you wonders if prescribed the right dose, we have to remember that our systems are haywire and don't react normally. Patience and persistence are so important to us with everything we do, unfortunately. I wish you luck on getting off the drugs you choose to lose, and getting on the right cocktail to get you back with your family and friends! Try to do everything as carefully as possible and remember that you're not alone in this!

A beta blocker is just designed to keep your heart rate stable--there are a couple different types of BB's, but most of them also lower your heart rate to keep it from going over 100 during times of rest. There are some undesired side-effects, like low BP, inability to enjoy sex, muscle fatigue, and shortness of breath associated with some of them, but for most people they feel a huge difference in energy not having bad tachycardia anymore.

I'm sure it can be a trigger for a person who already has POTS, because it causes a small immune response to teach your body how to fight it if you ever encounter it again. I said small immune response, but for us it's a big one because our immune systems are already somewhat jeopardized. Definitely not a cause of POTS though in healthy people (I say healthy people because anything, even falling on the ground can trigger someone's predisposition to POTS, or a small cold even). Any viral foreign pathogen can technically cause POTS in people if they have the gene or a specific immune response, but vaccines are not "active" pathogens so it isn't supposed to cause a viral infection at all. You may have a sensitive system though just like most of us. Just keep in mind that it is impossible for a vaccine to cause POTS in a regular person unless it was a bad batch or something, but you'd hear about that because there would have been others who got sick. The conspiracy theorists would have definitely used something like that against vaccines but so far they have no real ammunition. Pregnancies always cause some kind of shift in the body with how the nervous system works, and sometimes that doesn't always go back to normal and so it causes dysautonomia. Since pregnancy always develops that shift, sometimes POTS people actually get cured by pregnancies---then again, they could always go back to their dysfunctional selves after the shift, which I guess is your case. It's too bad one can't be pregnant forever! Are you wanting to have more kids? Probably not, eh?

Lots of things can trigger POTS permanently---just giving her more information to look into for her research. The things I posted above I put in a specific order to show that perhaps permanent autonomic disorders can stem from taking geodon, because other perma-neurological symptoms have already been proven to be permanent for some geodon users. There really needs to be a lot more research done on how POTS is triggered because there are so many causes. Maybe even the neurological disorder in the wikipedia article is triggered the same way the one you were talking about is. I guess we don't officially know. But there may be more research to look into somewhere out there.

Note: Tardive means 'continues or appears even after the drugs are no longer taken'. It says that there is one neurological disorder that can be tardive for some people who have taken Geodon, and since there isn't much research on POTS yet, maybe even POTS can be tardive, since POTS is a side-effect of Geodon. Hope that helps.

If you have bad tachycardia, that's all the beta blocker will really help---it's not a treatment specifically for POTS, just for the tachycardia symptom. But if your neurologist doesn't want you to take it---if she has a better idea, something to actually treat the problem rather then the symptom then it is up to you to decide to go with her advice. It's funny because my cardiologist wanted me to take my beta blockers but my neuro was against it, just like your situation. Odd. My Neuro ended up not knowing what to do about me though so she gave up and referred me to other people. She also thought I didn't have POTS, she just thought I had anxiety. Which I don't. She wanted me to just take Paxil and pretend all the other symptoms were all in my head. Ugh. BTW the only reason my neuro didn't want me to take beta blockers was because it has a tendency of lowering your BP, and my BP is already too low.

Pain and anything that alerts or stresses the nervous system can theoretically cause a flare-up, and for some people, taking a serious fall can even cause POTS---so it's definitely possible that a fall like that could cause symptoms to appear.

There are TONS of medications that can cause temporary POTS but as others have already said, there is still a lot we don't know about what makes it non-temporary. I can imagine that something that can cause temp-POTS can also cause a long-term nervous system dysfunction, especially if your body got used to running abnormally on the drug. But I don't know, hopefully they'll study more about it.

I assume people aren't going to care what POTS stands for and it also sounds really silly, so I always say I have "Dysautonomia, which means dysfunction or deregulation of the nervous system." Then that usually gives them an idea of how vast the symptoms can be, that is if they know anything about the nervous system.

Didn't realize how diverse this board was! =)

Why haven't I ever heard of the Wiggles? Is it something old or new? Are you guys familiar with it because of involvement with kids? I'm just wondering if anyone I talk to in my life will know what the Wiggles are...is this a well-known group?

I wonder if his nervous system isn't activating that muscle spasm that holds the urine? Sometimes mine doesn't work right and I have to use all my focused energy to tighten that muscle during an urge to urinate. Maybe his isn't working right? I hope you guys can solve this mystery. It definitely sounds out of the ordinary, like something to do with his nervous system.

Be confident, come prepared with questions and a straight-forward story, and have all your medical records organized in a way that shows them that there is NO confusion about the seriousness of your condition. =) Try not to talk too much though or else they might judge you, and try not to talk too little or else they won't take you as seriously. Try to seem like you are professional seeking the help of another professional so that there is mutual respect. It's interesting that you're trying to figure out your focusing issues----I have something similar going on and I've been told by a glaucoma-opth and a cornea-opth that there wasn't anything I could do about it because it was related to my dysautonomia. You're making me want to find another doc now =(

That was definitely me as a kid, all the way until 10. My parents tried SO much stuff---even this little panty-liner that beeped at me when it got wet. My parents would hear it beeping at night but I'd always sleep through it. I tried bladder training, timing, controlling liquid intake. Nothing was "normal" with me, so my parents eventually gave up and figured I'd grow out of it. They assumed I was just a heavy sleeper with a small bladder. I slowly grew out of it----this is how it progressed: At nights, I'd still wet my pull-ups, but eventually I started noticing right before I'd pee and I'd wake up and usually stop it. But since I had my pull-ups on, I'd just continue and go back to sleep---it was very familiar to me and I was sleepy/lazy and I never remembered peeing once I woke up in the morning, so I thought nothing had changed. Eventually I decided enough was enough so I wore panties to bed for the first time ever. I'd wake up and stop right as I was about to urinate, and then I'd realize I was wearing panties and I knew how uncomfortable it'd be if I wet them, so I went to the bathroom instead. That's how I stopped wetting the bed. It was annoying going to the bathroom 3-4 times a night, but I was angry with myself that I didn't realize all I had to do was switch to panties. Took me quite a few years to realize that I actually could wake up before I peed at night, but I'm glad I finally realized it and put a pair of underwear on to keep myself from lazy-wetting.

That is pretty high. Was he uncomfortable? My brother has a "runner's heart" that actually has an extra half-beat, and it reads as a really really high HR, but it turns out to be harmless. I doubt he has what my brother has, but I guess my point is, there's a chance it isn't POTS. But I would definitely watch out for other symptoms, and if ever feels uncomfortable or fatigued or anything out of the norm, I'd see about getting him some treatment before it effects his development and physical health.

Don't try to move a lot---really try to prevent yourself from throwing up. Flexing all those muscles and losing all those fluids is like running a deadly marathon for POTS people. You need to keep your heart from getting too stressed out or else your episodes will never end. I'm so sorry that you're sick. Definitely keep hydrated with something like Gatorade. When you lose fluids, you shouldn't just replace them with plain water, you also need electrolytes. Hope you feel better!

^Wow, you totally reminded me of the caffeine intolerance I had while I was a kid. Give me any small amount of soda or starbucks mocha, and I was a drug addict awaiting a devastating crash. It was never pretty.

Definitely depends on your dilation (which changes) and the thickness of your skin/fat too---soooo many variables, especially for us. Was just going by the general rule of thumb though, and then the POTS person can add their special variables, hehe. My veins are very small, so most doctors can't do the pulse in my wrist---but I guess my neck is still good. When my PP is low though, it's freaky, I might as well be dead. If I pass out during low PP I'd really fear what the medics would think if they picked me up. Scary. With high PP sometimes your veins can be so stiff, there's barely a quiver of a pulse. So it's definitely complicated!

I'm so thankful all these new clinical strength deodorants have come out recently, I have found a couple new favorites. I used to depend on Secret Platinum Protection since high school, but it looks like they're phasing that out for the new stuff.

How do you feel at 90 over 50? I'm just wondering because 90 over 50 feels fine for me and I don't mind being at that pressure at night even though it is technically the start of hypotension. It's when it drops below 70 that I get scared in the morning--and usually I feel really weak. I noticed that my BP doesn't drop low if I eat right before bed (yeah I know, that isn't a great idea if you don't want to gain weight, but it does make me feel better). Especially if it is something salty. Be careful with taking salt tablets before bed though, at least I have to be careful of that because for some reason the horizontal position makes the salt tablets irritate my stomach and give me more heart burn than usual. Or maybe it's acid reflux, I really don't know. I don't have the best advice, but my goal in eating before bed is just to get my blood sugar at a good reading and my BP as high as possible. A lot of us also keep saltines next to the bed and if we wake up feeling nauseous (also a sign of low BP) we eat some and it can help you get up better in the morning. Btw--here's something that my doc recently taught me. Subtract the top number of your BP from the bottom (systolic-diastolic) and that will give you your pulse pressure. Anything below 25 is a sign of low cardiac output (not enough blood pumping through your body) and something between 60-80+ is mostly associated with the dangers of hypertension. My BP was 110 over 98 the other day and I felt like I was dying---my doc said that can happen at night often and that is what I should worry about the most, not low blood pressure. In us, our docs don't worry as much about the low BP (unless of course you go wayyy low), mostly just the low pulse pressure. We could have a heart attack or go into shock if it goes too low, and we could have organ damage or a hemorrhage if it goes too high while we sleep. I hope that helps. Wikipedia says a normal pulse pressure is around 40, so I think you might be overall pretty safe in that area, but if that diastolic number gets too low and your PP gets too high, you may need to get that under control so that it doesn't stretch out your veins for the morning-time. In case you were wondering what a low and high pulse pressure is like--- a low pulse pressure you can barely feel your pulse, and no matter how fast your heart is pumping, not as much blood is flowing through your veins. A high pulse pressure is easy to feel when taking your pulse, because your veins will be tight and stiff and pumping a large amount of blood through your system. High pulse pressure is associated with hypertension because it causes the same kind of damage---so you can have hypertension even if your systolic number is in the normal range. Low pulse pressures are associated with hypotension no matter if your systolic number is high or not, because people with blocked arteries and whatnot have low PP and can go into shock or states of hypotension if the PP dips too low. (systolic) - (diastolic) = (pulse pressure) which is more critical to know for a POTS patient worrying about a crash.

I had frequent urination as a child and I also wet the bed every night until I was ten. Around 6 I'd have trouble with shortness of breath, noticed especially when my mom would take me shopping for school clothes---I'd constantly have to eat snacks, drink water, and sit down for little breaks. Even then, I was always complaining that I couldn't breathe. Then when I was a pre-teen I was constantly fatigued after school and would sleep sometimes 13 hours a day. Also, extreme motion sickness every time I got in a car, no matter how short the ride was.

Yesterday I looked in the mirror and it looked like I had applied lip-gloss to my mustache. So gross. I sweat a lot there even when I'm not moving.

I think it happens to most of us---the warm water dilates your veins and makes your blood pool faster, so you are more symptomatic. Standing really doesn't help the whole pooling problem either so it's the worst combo =(

Sometimes pregnancy can actually cure pots! It's so unpredictable. I'd definitely get a special doctor though to make sure your health and your baby's health is fine during development. Always better to be overly safe.