JaneEyre9

Hi Nina,

It's so tough to have a POTS crash. I'm not sure which is harder...the physical misery or the emotions that come with the limitations. I want to send my wishes for a very speedy recovery. Sorry you're having such a rough time right now.

Kristen

Steph,

that's fantastic news about your procrit. what a story! I was smiling when you said you made the right friends in college. It's really incredible that you made it happen...and so quickly! Getting paperwork done at my college takes longer than your government ordeal! Way to go! Can't wait to hear you feeling better.

Kristen

Wow...what a story. Even though it wasn't as dramatic as a child-bite, the double injury at one time still wins my sympathy! So sorry, Nina. I can't even begin to imagine the pain. Hopefully this long weekend will give you some much needed recovery time.

Kristen

Karyn-- it's so good to hear that your family is alive! My thoughts and prayers have definitely been focused on the people suffering down south. Thanks for keeping us posted. Hope that you hear from your grandma and uncle soon

Poohbear-- sounds like your food drive is a great idea. it will help as well as get your mind focused in a positive direction. it's so hard to feel helpless and watch the images on tv.

Kristen

I just wanted to add that with my POTS, i get the high heart rate, but my BP stays pretty normal till right before i'm ready to pass out. I've never had a doctor capture a particularly exceptional BP reading on me. In fact, sometimes my systolic BP will climb just a bit before crashing. Diastolic BP starts to fall off at this point.

As for arrhythmias, there's no real way for your doctor to monitor those unless you have some sort of event recorder. I just had one for the past month and was able to press the record button when i was having symptoms. I was usually so out of it that i wouldn't even think to press it, but a couple times i was able.

Hope you can get some answers.

Kristen

Hey Morgan,

Glad your doctor is taking this seriously. It's such an awful thing to have to display all your passing out "talents" in order to get the message across. I unfortunately had to do that at work before they took me seriously. I hope that things start to work out for you. At least you still have your sense of humor Thanks for the laugh about the beautiful doctor.

Kristen

Gwendolyn,

It's so hard to have extreme family stress in the midst of illness. Sorry to hear things aren't going well for your parents. It's a tough thing to be the kid in the situation and not have any control over how things turn out. There are so many fears.."what if" this and "what if" that... I'll be thinking of you and praying for you.

Best of luck with the tests...i hope they give you a way to ease your symptoms.

Kristen

When i don't feel well (dizzy, confused...having symptoms in general) AND i'm in public, I'm definitely on high alert. (Looking for a soft place to land ) Also, I feel on alert if i'm having symptoms and i'm with someone who doesn't know what to do with me if i faint (someone who might not completely understand what's wrong with me).

However if i'm having a good day, with someone in tune, or i'm safe at home then i don't really think about it too much. I only go on alert if my body upgrades from "normal" to "caution" and i don't have a way to deal with it properly if things get worse.

More often than not i'm pretty laid back about trying to do different activities (not held back by fear)....I like to be as independent as possible. I'm one of those kids who said "me do it" all the time when they were 3 years old.

Not sure if it was my bad case of mono at 15 (like sunfish) or a series of serious chemical/mold exposures several years later at 17.

My symptoms became debilitating this year at 24yrs-- after a bad virus that lasted 3 months.

I too am always worst right before my period...so the hormones definitely play a role in my case.

Wow, Nina...you spoke right to my heart on this post. I have so much admiration for you being a full time graduate student and working full time. I just want to say good luck tomorrow and this week as you try out your new schedule.

I, too, felt i had to give up on my artistic side for a way to earn a living...thanks for giving me hope that that might not necessarily be the case What exciting news!

Kristen

Hi Jeff,

Not sure if this would help you or not, but maybe a daily fiber supplement would help you out? Something like Citrucel can help when autonomic issues affect your intestines. It's a nice natural way to help regulate yourself rather than with medication. Maybe you have tried this already, but it sure helps me.

Kristen

Mary,

I'm sorry to hear you're going through these hard times. My mom is caring for her dad with kidney and heart problems and i know how stressful that situation can be...not to mention the other things you have to deal with! Hope your health improves most of all. You'll be in my thoughts!

Kristen

Just a little test you can do on yourself... take your pulse while lying down, then take it a minute or so after standing. If it is 30bpm faster than lying, you can tell that to your doctor and ask for an investigation into POTS. That's what the nurse did for me at a "special syncope clinic." All it took was 5 minutes, and i had my diagnosis Too bad i had to get it all formalized with the TTT, a doctor consultation, and lots of other things. I had been fasting and was sitting there for hours feeling so sick!

Best of luck...glad you found this place. Best thing you can do for yourself is become educated with all the resources here on this site.

Kristen

Hi Morgan,

Sorry to hear about your awful experience with your first syncope. It must have been terrible to feel so sick....struggling to stay "normal looking" for your husband's sake...the whole time feeling on the verge of passing out. I really have to say that i admire your spirit to be there with your husband even when you felt so terrible.

It's awful that doctors have not been able to help you so far. Maybe since they were able to pinpoint a few abnormal things in the ER, someone can put it all together. I hope your doctor can help you on Wednesday to do some detective work.

Also, i want to say on a lighter note that i love your new icon. I'm a huge fan of Westies (had one as a kid). As soon as I'm able to walk one around the neighborhood, we're going to get another one.

Kristen

PS-- have you had your kidney function checked? Hypokalemia without any drug-cause sounds like it might be kidney related.

Hi Gwendolyn!

I'm a fellow flute player I'm 24yrs old with POTS. Glad you found this forum. It's a great place to get emotional support and information.

Kristen

LoL, Steph! I had the same thing going on in college. I would always give my dorm-living friends rides because of my great parking.

Sounds like another case of ignorance, Chrissy. Just one of so many that we get as people with not-so-obvious problems. "oh but you look so good!" is always the best to hear when you feel so lousy.

Kristen

Thanks for the helpful replies.

Poohbear, i didn't know that atenolol was long acting. That helps me understand better why i may be on metoprolol. I have been on it along with florinef...melissa i think that's why it worked for me...it seems like a beta blocker works well when it's coupled with something else. I really have felt relief for the first time on my increased dose of metoprolol...dizzygirl, i have been tweaking the dosages and i finally found one that feels right (either that or i've just had enough time to recover from my last spell) But the insomnia set in right after this increase. I'm thinking that maybe if i just don't take it at night that it might alleviate the wide open eyes at 6am....and 7am...and 8am... not sure.

Do you guys feel immediate relief from POTS symptoms with BB and/or other meds? Melissa, it sounded like you got immediate relief from some of your meds at Vanderbilt. For me it seems to take weeks and weeks to feel just a little better. I'm just not at a really stable place yet. I feel like i'm balanced very very carefully at the tip of a pin....hopefully my first cardiac rehab session tomorrow won't push me off!

Man, Chrissy! You are lucky you were able to catch that heat problem before move in day. I hope they have it all fixed up. Glad you were able to call them on it. I had all sorts of "bumps along the way" when i was going through my first semester of college...then i had to do it all over again when i transfered! Luckily, by senior year there were virtually no bugs. only took 4 years, right? There's nothing i can understand better than trying to get through the college system with hard-to-grasp medical problems.

Sounds like you have everything pretty well planned ahead of time though. You and sunfish are both making me nostalgic! This is my first August since before preschool where i don't have a class starting. It's sort of a crazy feeling! Anyway, i enjoyed reading your story...keep them coming!

Kristen

Hooray Melissa!!

Sounds like you were well prepared and your work paid off! That's wonderful about your classes not being in the morning. And it's also terrific that your wheelchair worked out well. good luck with the long day tomorrow!

Kristen

Which beta blocker to you all use? I've been on Metoprolol since May. Now that i'm finally up to a dosage that helps my POTS, I've been having major insomnia issues. I've heard that metoprolol can cause insomnia, but atenolol doesn't have any side effects like this....does it have other side effects that i don't know about? I'd really like to switch, but i want to know what that may entail. Have any of you switched beta blockers before for different reasons? What are your experiences?

Thanks for your help!

Kristen

I second the Little Italy thing...yum! Have a great day, Melissa!

Kristen

I would like to add my thanks as well. This is a great forum. It's well organized, helpful, and had made such a difference in my life.

Kristen

Just wanted to add that i went through the mold exposure thing. It is disabling.

If the family moved into a brand new home, they could have some sensitivity to the off-gassing of the building materials. Also, if they moved contaminated things from their old house into the new one, they could be having continued lower-level exposure. Being away from the mold source, will help. Also the mold could have made their existing health problems worse.

She might want to check out the fungal research group.

http://www.fungalresearchgroup.com/

Dr. Johanning from that group was the one who saw me for my mold exposure. It was very eye opening to learn that the toxins from certain molds can set off such horrible health problems. My whole family suffered greatly. We were comforted by learning we were not crazy and that we could get help by living in a healthy environment. Hope your neighbor starts to feel better. She is also welcome to email me with questions.

Kristen

Hi Chrissy!

Sorry I'm late in welcoming you! I was relishing some time out of the house recently after a long period of being bed-bound. I'm 24, also a Clevelander...I got a degree from Case Western Reserve not too long ago and have been finishing up a masters there too. I used to drive by John Carroll almost everyday and almost went there instead of Case. I'm so glad to hear you have good support from the staff there. It's really wonderful when people put so much energy into accomodating your health needs. Also super glad to hear you decided to live in the dorms. It's a great experience! Good luck with your move in.

Kristen

Hi Rachel,

Welcome to the forum! Glad you have good medical support. I'm 24 with POTS, MCS (multiple chemical sensitivity), IBS (irritable bowel syndrome)...those are the biggies. I've been a graduate student for the past few years but have been sidelined this summer with POTS. This is a great place to get information and support. I'm glad you found it.

Kristen