Mrs. Burschman

Becca, I understand where you're coming from. I quit taking Paxil (Seroxat in the U.K.) four years ago and got really, really sick. Everyone, especially me, thought I had a "nervous breakdown." Well, it turns out that I did, but not of the psychiatric type! It seems the Paxil helped calm down my autonomic nervous system enough that I didn't know I had POTS. I only found out that I had POTS when I (once again) tried to go off Paxil again, this time by tapering it really slowly. I knew something was wrong when a month after I took my last dose, my hands and feet started tingling. I started blacking out. I got dizzy. I started losing weight. I was so nauseated I couldn't eat. I did research and learned about dysautonomia, got myself tested and got my real diagnosis. So now I'm in the process of "rewriting" my view of myself -- I'm not crazy, but I thought I was for three years, so it might take some time to get over that! A good counselor helps. In fact, my counselor talked me into getting the autonomic testing. She knew we were dealing with more than just "anxiety." My psychiatrist also was very helpful. In fact, now that she knows about my POTS, she wants to send a couple more of her patients with atypical anxiety symptoms in for autonomic testing. We're glad to have you here! This board (and the people on it) is a wonderful resource. Books also can help. There's one I'm reading called "Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness" that's good. You also might find books on grief. What you're feeling is no surprise given what you've been through! Hang in there! Things will get better, even if it doesn't seem like it!

Morgan, I've heard you can nicely boost your iron intake by using cast iron cookware -- just a goofy suggestion!

Yes, it's a weird thing to be thankful for, but I'm thankful for my visual migraine aura! I'm glad your test went well and that you're feeling better. Sounds like you have a good ER!

Welcome aboard! I'm glad you found a drug that helps you! And you're right, it's really nice to meet others who understand!

Yuck! I hate migraines! Mine don't get too bad if I can take my medicine within about three minutes of getting the visual aura. But, like you said, that's kind of hard to do when one is driving! I'm trying to keep a water bottle in my pickup just in case. That's easier than trying to figure out where to stop to find something to drink so I can swallow my pill. Good luck on your test. I hope you feel better soon!

I saw this at work and just thought I'd post the link for those of you with this diagnosis. I figure anytime diseases are found to not be "all in their head" is good for us POTSies! Chronic Fatigue May Have a Viral Link Microorganisms May Cause Condition Affecting 1 Million Americans http://www.abcnews.go.com/Health/Germs/sto...6928&page=1

Thanks to all of you. I'm hoping that with time, I will be less scared. It's only been a couple months since my diagnosis, so maybe it's understandable that I'm a bit freaked out right now. I really appreciate the support!

For those of you with POTS, maybe it doesn't really matter, but I've been trying to figure out what type I might have. I was wondering if only those who have the hyperadrenergic brand get those lovely "adrenaline rushes," or if that happens to everyone with POTS, regardless of the type. Also, I'm 99% sure that mine was inherited. For all you experts out there, does that point toward one type or the other? My doctor was no help. His nurse said, "Yep, you have POTS" and told me to eat more salt. He didn't test my norepinephrine levels during the TTT. Hope you don't mind being dragged into my little "Hardy Boys and Nancy Drew" sleuthing adventure.

I'm sorry, Heiseygirl! I think maybe you need to decide what it's worth to you to see the doctor you like. Paying out-of-pocket stinks, and it's not fair that you'd have to do that, but is the price worth it? I know that I would still see at least one of my doctors if she stopped taking my insurance all of a sudden. Also, is it possible that the doctor would give you a break on price to see him out of network? It might be worth asking, anyway. You might also ask Dr. Khruna if he knows of anyone in your network who might take on your case. Maybe he could consult with them and pass on the information he has. We're here for you! Amy

Hi all, I'm wondering if anyone could offer me any advice on the best way to cope with the fears that come with having a chronic illness (Will it get worse? Will I become totally incapacitated? Will anyone still love me if the worst happens?) I am seeing a counselor, but sometimes it's nice to see what other people who truly do understand have found to help themselves, if anything. I'm just scared a lot. Amy

I think some of the doctors don't like it when we research. Of course, if I hadn't done research, I would have never seen this site, would have never thought I might have POTS and would have never been tested for (and diagnosed) with it. I would still just be a psychiatric patient.

I get chest pain, too. Mine often feels like my chest wall is really tight. It comes and goes.

This board is great! Thanks to the moderators and the caring people who post here!

Melissa, Thanks for checking in. We're all pulling (and praying) for you!

This seems really bizarre. My sweating is in the same pattern! When I wake up, I almost always have a wet spot in my middle -- like the sweat's running right down my cleavage. And inner thighs, too. That's really annoying!

Mary, I'm taking Lyrica because it helps me feel less "anxious," as in less fight or flight response. But I'm taking such a dinky dose, it could be a placebo effect.

Pretty girl! Tell her I said so! Amy

Oops. Sorry. I was being Amero-centric. We'll send copies to Britain and Australia, too!

Could we please clone him and distribute copies equally across the United States?

Rachel, Not to be contradictory, but Wellbutrin actually increases dopamine and norepinephrine, not serotonin. The SSRIs increase serotonin. Wellbutrin is in a class of its own. I just didn't want anyone to get confused! Amy

Or you could agree to get a neuropsych evaluation after the neurologist does. Heh, heh.

Angela, Yep, it makes total sense and would be entirely understandable. Coping with chronic illness is really difficult. I know what you mean, too. My mental state is CAUSED by my physical problems. I'm more convinced of that every day. My body feels "anxious," and that makes me anxious. That also explains why talking to a counselor hasn't made a difference. Talking to someone doesn't slow down my heart rate or make my nerves behave better! But now that I know that, talking to a counselor can help me cope with having POTS. Luckily, the counselor I'm seeing seems to understand and does not think that I'm a nutcase.

Angela, After rereading my post, I wanted to make sure you didn't think I was suggesting that you need a psychiatrist. I was just saying that it seems sometimes the individual doctor is more important that whatever specialty they're in. If you feel misunderstood, find someone else, by all means! Life's too short to put up with docs who don't get it!

The cape was for extra padding in case he passed out and fell down.

Nolie, Check out this article. It goes along with what Sushi is saying: http://www.fmpartnership.org/Files/Website...Explanation.htm