Dizzy Dame

Sorry to hear there are so many broken toes around here! I guess when it rains, it pours Hope you feel better Stacy and Morgan. -Lauren

Good to meet you kristen. Everyone here has been so nice It's good to know there's a place for all of us POTS heads -Lauren

Ithomas, so witty (lol) ! I was also diagnosed with panic disorder, well, first the doctors though I was being "clumsy" when I starting falling down all the time. Then they saw my high heart rate and grabbed the "panic disorder" stamp. However, for me it was a grave misdiagnosis. The doctors put me on xanax (which can lower blood pressure). The first time I took it, my bp dropped so low that I couldn't even say my own name. The second time I took it I passed out, and the third time I took it I had an allergic reaction so severe that I had to spend the night in the ER . Fortunately I'm no longer on it and the doc's know that I have a "blood in the brain" problem. Still, it's infuriating! - Lauren

Hi Melly, I live in Hawaii, so I haven't been able to go to any well-known places for a diagnosis. For along time, the ER and my old doctor pawned my sypmptoms off as anxiety disorder. However, I went to see a psychiatrist and talked with him for an hour and he said that there's no way my symptoms are related to anxiety. I got him to write a letter saying that I DO NOT have an anxiety disorder and I carry that letter with me every time I go to the hospital or go see a new doctor. It has really helped. So perhaps that's an option for you if you haven't or can't go to the bigger, more impressive clinics. Hope that helps -Lauren

Ooooh....what period? Oxford has some of the best manuscripts in the world! I can't wait to get my paws on them! Have a look at www.english.ox.ac.uk <{POST_SNAPBACK}> I'm most likely going to study 20th and 21st century forms. I think it's just too exciting to see poetry evolve right before my eyes! and so fast too! Plus it's really cool to be able to write the poets I'm studying Still, I may go for an MFA in poetry if I can get into Iowa or Cornell, because while I love theory, writing is my passion. I'm a ways off though. I need to graduate with my BA first, and while I was on track to graduate in a year, now it looks as though it may take longer. Still, Oxford would be wonderful. Thanks for the link, I'll check out (and probably slobber over) thier programs. - Lauren

Happy Birthday Persephone, sorry it's a little late -Lauren

Thanks steph, and great to meet you I actually do sleep with a big, fluffy pillow, so that's probably the culprit. I'll start eating salt before I go to bed and sleeping with my head flat and see if that works. Thanks for the tip Lauren

Dizzy, That sounds so scary and awful! I'm so sorry you've been having these freaky episodes lately . I wish I could say more to comfort you, but just know that you'll be in my thoughts. Good news on the apartment though! Could you take a cab when you have those scary episodes? Or is the hospial too far away? Sorry to hear you've had such a rough week. - Lauren

I've recently (about two weeks ago) began to wake up in the morning with a splitting headache ( very similar to a hangover headache). I usually sleep through most of the night, but start waking up at around 5am in pain. I'll go back to sleep and wake up again every 1/2 hour or so. The headaches usually go away if I drink a bottle of gatorade. Does this happen to any of you? Do you know what causes it? Thanks, Lauren

AHHHHHHHHHHHH! I'm going through similar problems right now with my school. They don't seem to understand what it's like to be sick and on your own. Plus I'm on my cycle and things always get much worse this time of the month. Today, every time I get out of bed I grey out and fall, I can't even walk the ten feet to the bathroom! And the ER is sick of seeing me. They officially told me last night that they don't know what to do with me anymore but give me fluids and monitor me. And I'm sick of having purple and grey arms from all the needles Ok. I feel much better now. Thanks for the opportunity to get all that muck off my chest. Hope things work out for you as you get ready for Oxford -Lauren

Good stuff. I've actually been cosidering Oxford for post grad studies. Let me know how you like it when you get a chance - Lauren

Forgive my ignorance, but I thought that the pain associated with lyme disease was different from fibromyalgia. Am I wrong? - Lauren

Hi bamagirl, I thought it was just me! I usually get the shakes when I'm hypo (I usually get tachy as well). My mother says that my hands actually get cold to the touch when this happens. I usually shake for a few minutes (sometimes so hard that I have a difficult time breathing). I've learned that lots of warm blankets usually bring me back around. What you're going through sounds different though, since you don't feel cold. I'm not a doctor, but I'd be willing to bet it's a bp thing. Anyway, you're not alone. I guess the shakes are just another wierd symptom of POTS (how come all of the symptoms seem to be wierd and random ) Take care, Lauren

Baby boy, I agree with persephone about trying to stick out this semester. I went through the same thought process when I got sick and almost quit school. However, my classes have become a good distraction from my illness. If I wasn't in school, the only thing occupying my mind would be my symptoms, and I imagine that would make things worse. However, only you know how bad you feel, so the decision is entirely in your hands. I hope you are able to find someone (a professional) to talk to about this and hopefully you can start to feel better when you're outside. Take care, Lauren

Hello all, I joined the blog yesterday and spaced on introducing myself. (I'm a blond so I have an excuse). I'm 23 and was diagnosed with POTS and Orthostatic Hypotension two months ago after several months of ER visits (I would "fall" "randomly" and they kept telling me I was "clumsy".) The doctors are still in the process of figuring out exactly why I have these conditions, but they've already ruled out everything but autonomic dysfunction (I suppose they're still trying to figure out just HOW dysfunctional my autonomic system is). Before I got sick I was obsessive horse rider, and swimmer (I live in Hawaii so there's not much else to do). Now I'm a bed jockey. I still go to school, but I could only do three classes this semester and I've missed alot of them between hospital stays, doctors visits and days where I can't get out of bed. I still have my poetry though, my only invincible passion, so I guess things could be worse. It's been rough, but the experience has grounded me and I know I've grown as a result of it and hopefully will continue to grow through this mess. I stumbled onto this website when I was trying to find a doctor that actually knew something about POTS beyond how to diagnose it. I'm glad I'm here: You guys know what I'm going through, and I feel like I'm not alone in this. Hope to have many conversations, Lauren

HI faith, You responded to my question about BB's and Hypotension yesterday and I really appreciated it. You sound like you've had a pretty rough time, but you have a wonderful, supportive family and that means alot. I look forward to talking with you. - Lauren

Sit up, glad to hear you're feeling better. I read your post yesterday and I felt for you. Dizzy, glad to hear you're getting some wheels and won't have to walk to the bus stop anymore! I don't know what to make of the BP. I've never had any wierd numbers (other than really, really low numbers). But you survived it, so I guess it isn't deadly If you do find out what the BP means let us know, I know I'm curious to see what numbers like that are caused from. - Lauren

hi bamagirl, I've noticed that my worst symptoms come and go, but I get tachy almost every time I stand up for more than a few seconds. I've noticed that most of us are saying that our worst problems come at night, the same is true for me. I can actually tell how bad my night is going to be based on how my day is, and my worst hours are between 8-10pm. I wonder why that is? Anyway, I don't think fluctuations in the severity of symptoms is abnormal based on what everyone's been saying, and from my own personal experience. Hope that makes you feel better. -Lauren

That sounds poopey, but I'm sure you'll have good days again. I wonder, though, if the fear of having another tachy episode made your adrenaline surge. I know that I sometimes get so afraid when my heart begins to race, that I make it race even more. I sometimes get massages to help get the adrenaline out of my system after a really bad week. I've heard that the lactic acid produced when someone has an adrenaline surge stays in the muscles and makes them achy. Maybe getting a massage will help get all that nasty stuff out of your system so you'll feel better faster. And even if it doesn't help you for that reason, at least it'll feel really good. -Lauren

Thanks guys for responding. I think I'll wait to try the beta blockers, I don't mind the racing heart as much as I mind the hypotension. I know it's a choice of one poison over the other, but hey, who said any of this was ever easy? - Lauren

I agree with what others have said about keeping the phone nearby and staying in bed or sitting. I've also been looking into is those senior monitors: You can purchase the service for about $30 a month in my area and they seem like a good thing. Right now, my mother's staying with me so I don't need the service, but when she leaves I'm getting it. Still, even if I'm left alone for twenty minutes or so I get nervous, but I tell myself that I haven't died yet, even when my symptoms were awful, for some reason that makes me feel better. -lauren

I've noticed this as well. I'll feel dizzy, and short of breath; my heart-rate will be through the roof but my bp's normal. Other times, I'll feel really crappy and bp and heart are normal (heart rate can be a little low). I've noticed that I tend to feel crappy w/ normal bp when I'm laying down with my legs up. I have no idea why this is, but judging from the responses of others, this isn't out of the ordinary. Hopefully someone has an explanation for this, although sunfish had a good point.

I suffer from POTS and Orthostatic Hypotension. My doctor wants to put me on Beta Blockers for the POTS, but I've heard that they lower bloodpressure. Is there anyone who is on Beta Blockers with Hypotension? Did they make it worse? Better? I want to try to control my heart, but I don't want to start greying out again because of a hypotension relapse (my blood pressure has just gotten under control).

Sorry to hear you're in such a rut. I know I've been exactly where you are now, and still find myself in that dark place at times. Being sick is horrible. It's never easy and never fun. Forgive me for trying to impart advice, but this is a quote from the Dalai Lama that has become my mantra through my illness: "If there is a way to overcome the suffering, then there is no need to worry; if there is no way to overcome the suffering, then there is no use in worrying. " I hope this helps you, or if not, perhaps there is a different philosophy that you can adopt to make things easier.