Mrs. Burschman

Madeline, I don't know exactly what your abilities are as far as working out goes, but I know that that's supposed to be really helpful to burn off some of that extra adrenaline. I know it helps me! Can you do any exercise in a pool? Or maybe some form of yoga or stretching? Like I said, I don't know what your abilities are. Wish I could be more helpful! Amy

mkoven, I got a full back/neck MRI only two months ago. Nothing was amiss. I just wish my body would behave! Amy

Just being my usual worried self today. For the past few days, I've noticed that sometimes I get a burning sensation in the toes in my left foot. I have noticed a few places that have said neuropathic pain can go along with POTS. Have any of you had something similar happen? Everytime I get something new, I get terrified that it will never go away and become chronic (probably because I have so many chronic issues already.) Just seing my doctor isn't really much of a possibility. The neurologist who diagnosed me has a waiting list of a few months to get in. Besides, I'm a hypochondriac. If I went in for everything I worry about, I'd be in there all the time. Any advice? Has anyone ever had burning pain that went away on its own? Thanks. Amy

I had fun on Friday teaching my psychiatrist all about dysautonomia/POTS. She said my next career can be in medical research. I don't mind if doctors don't know about something as long as they're willing to learn! This doctor helped me get an appointment with the neurologist who runs the autonomic testing lab at the local hospital. And she said if there are medications I'd like to try, she'd be more than happy to work with me. And there are a couple more of her patients she said she might send in for autonomic testing because they have a few too many things in common with me. I love doctors like that! Too bad many of them aren't! Thanks for the article, Doctorguest. I'm sure you're one of the good ones. Amy

Sorry you had to come back, but welcome back! Yes, drinking enough water helps. It is not a cure, however. And it is not all in your head! Of course, I've spent the last three years thinking it was all in my head, so I'm still working on that! I don't remember you because I'm new. But I understand the weird symptoms, and I'm glad you now have what seems like a correct diagnosis. We're here for you! Amy

Hey all, I know that research has shown that some forms of hyperadrenergic POTS are inherited. Does anyone know if other forms of POTS are as well? I'm convinced that my great-grandmother, grandfather, mother and brother also have some dysautonomia, but I'm not sure what type. We don't have joint hypermobility. Have you run across anything in your research? Or do any of you also have a family history? Thanks! Amy

Hello all, I've got a cold right now, and I'm noticing that it seems like it's made my propensity to black out when I change positions worse. I particularly noticed it when I was shopping. If I crouch down and then stand up, I get a head rush. I'm not taking anything for my cold (such as Sudafed or something.) Anyone else notice this? Why would that happen? Just trying to determine what's normal. Ha, ha. Amy

Maxine, All I know is that when I attended South Dakota State University (go Jackrabbits!) the weirdest people on campus were the psychology and art majors. No offense if there are any here! Amy

Thanks, Dari. I'll have to check that out. In my mind, since the autonomic nervous system controls so many things, it only makes sense that having it be "off" might lead to other things being "off." Who knows? I've always felt like, for a basically healthy person, I sure have a lot of things wrong with me! Amy

Count me among those who seemed to be helped by BCP. I "blacked out" upon standing less when I was on them. But I stopped taking them because I also get migraines with auras, so birth control pills raise my risk of having a stroke by seven fold, or something like that. So I got an IUD. It doesn't do anything for the head rush, unfortunately! Amy

I'm sorry, Dari! I don't have any great advice. I think what you're describing is really common with people with "invisible" illnesses. I figure I'm going to learn more about that, because I'm going to start attending the local CFIDS/FMS support group. It's the closest thing I can find to a POTS support group! I just wanted you to know that I -- we -- understand what you're going through, and we're here for you. Amy

To all, I've noticed looking at everyone's signatures that if you have POTS, you tend to have other problems, too. From what you've learned, do these other issues (irritable bowel, interstitial cystitis, polycystic ovaries) also have some relation to the autonomic nervous system? Have any of you asked your doctors about this? Just a newly diagnosed POTS-y trying to sort everything out. Thanks. Amy

I once triggered a migraine in myself by getting too PO'd. So I wouldn't be surprised in the least. Amy

I am seeing a counselor for cognitive behavioral therapy. I think I must just need to work on this particular angle more! Thanks all, Amy

I have a problem that I'm not sure what to do about. A little backstory: After taking Paxil for 10 years for what I thought was plain, old anxiety, in 2004 I decided to quit it. That's when I started to get really sick. You know all of the symptoms: tingling hands and feet, "blacking out," dizziness, severe diarrhea, weight loss, chest pain, tacchycardia upon standing, a continuous feeling of adrenaline running through my veins, and on and on. I thought I was having a nervous breakdown. I ended up in the local psych ward for a week, which was entirely unhelpful. I now knew what my problem was: I'm crazy. I restarted the Paxil. Symptoms abated. Fast-forward to 2007: I found a medicine that seemed to help with the anxiety a lot more than the Paxil ever did (Lyrica). So I decided to try to go off the Paxil again. I tapered down my dose over the course of six months. But once again, I started to get sick. This time, I once again thought I was crazy, but I also found information about dysautonomia. I got tested, and lo and behold, I was diagnosed with POTS. I restarted the Paxil. Symptoms have mostly gone away, except for lingering anxiety. Here's the problem: I've spent the past three years convinced that I'm crazy. Loony. A nut job. Now I've found out that a lot of what I experienced was entirely physiological, not simply psychological. But how do I change my view of myself from someone who's mentally ill to someone who has POTS? Amy

I'm new to the forum, so I don't know everyone real well yet, but I do know that Sunfish is a very special part of the support network here. We hope you feel better soon, Melissa. We're pulling and praying for you! Amy

Oops. That should be hyperadrenergic. And to think I'm a copy editor by trade!

Does the fact that SSRIs (Paxil in particular) seem to make an enormous difference in my symptoms give any hints as to what kind of POTS I have? I didn't know if SSRIs help people who have the hyperadergenic form. It sure seems like that might be the kind I have -- I was having nearly constant panic attacks when I was at my worst (not taking Paxil). My friendly local endocrinologist thought I might have an adrenal gland tumor, but -- surprise, surprise -- I did not. If anyone has an answer, I'd be much obliged. Thanks! Amy

Thanks for the link! It's a good article. Incidently, there was just an article a few months ago in Ladies' Home Journal about how his wife copes with panic disorder. Sounds like they make a good team! Amy

Thank you, Dari! I also have a good counselor and also a good psychiatrist, who both agreed with me that something had to be up besides just anxiety. They helped me get the appointment with the neurologist who diagnosed POTS. Now I just need to stop being so scared. Easy to say! Amy

Migraines suck! I wish I knew what to tell you. I take migratine (not sure if that's a brand name or what -- it's a combo of acetominaphen and a vasoconstrictor and a muscle relaxant). That works better for me than the newer (and much more expensive) triptans. I've had migraines triggered by getting really angry, bright lights and (the biggest one) changing my sleep schedule. I nearly always get one on every vacation because of that one! I've never noticed one caused by food, but I know that is a big trigger for some people. Do you have an ask-a-nurse phone line at your local hospital? I've used those before, and the nurse on call has helped me decide if my problem is something I need to worry about or not. I'd try that. Hope you're feeling better soon! Amy

Jennifer in Ohio: I wrote you a personal message, but your inbox is full. I saved it, so clear me a spot! lthomas: I'll have to look into that. Sounds interesting. Thanks for the info. Amy

Thanks, guys! I really appreciate it. Pat: I'm thinking about going to an Emotions Anonymous group that meets here. It's kind of like Alcoholics Anonymous but for people with depression/anxiety/panic/etc. Fargo's a bit far away -- something like six hours! And my counselor is working with me on cognitive therapy. I'm finding that it's hard work to change the way I've thought for 31 years! Mom4cem: That wasn't very nice of the doctor to laugh. He evidently has never had any health anxiety. It's horrible! Thanks again. Amy

Doctorguest, Thanks for hanging out on this site. I know I speak for others when I say that it's nice to have some professional analysis of our conditions and concerns! Amy

Flop, I really appreciate your advice. I am seeing a counselor, but it's also helpful to hear from others who understand! I'm going through a lot of other stress now, too. My job is horrible and keeps getting worse. My husband wants to change careers and more than likely it will involve a move. I think it all adds up. Thanks again for your kind response. Amy