PattiL

Brye is on the same page as my daughter Chrissy. Zofran is the drug of choice and I don't know what she'd do without it!

Thanks everyone, we'll look into these sites!

Has anyone been able to purchase their cooling vest at a retail store, or are they all from online? I'd love to have Chrissy try one on b/f buying. I've tried calling sporting goods stores, medical supply places, etc. I've heard they're used by people with MS and many football players, mascots, characters at amusement parks--do they all purchase them online too? Just wondering. Patti

Chrissy has had great luck with tilting her bed. I think it's been about one year since we tilted her bed (6")and the thing it helps the most with is her nausea in the morning. It took her awhile to get used to it--maybe about 1-2 weeks, but it was well worth it. We bought bed risers from Target or Walmart, here's a link...of course, we only used two for the head of her bed. http://www.target.com/Plastic-Bed-Risers-S...4-3566611-44295 Patti

Hi, I've sent you a private e-mail. Hugs to you and your daughter. Patti

Stace, We've had the same problem. Dr. Grubb's office canceled Chrissy's appt. last August and said we have to wait for a call back or see Beverly. We started seeing Dr. Robert Shields at the Cleveland Clinic who we just love. Chrissy sees him every three months and for us it even more convenient than going to Toledo. He's very patient and knowledgeable like Dr. Grubb and he is head of the Autonomic Laboratory, Department of Neurology at Cleveland Clinic, Here's some info on him. http://my.clevelandclinic.org/staff_direct.../Staff_505.aspx Hope this helps some. Patti

Hi Melissa, As Chrissy just said, if she's feeling better, we'll be stopping in to see you this week, lucky you! Hopefully YOU'LL be feeling better and won't be there! Wishing you all the best and lots of (((((((())))))). Hope to see you soon! Patti

Thank you so much for this link. Wouldn't it be great if all major cities would do a segment on POTS? I'm sending this to some of my relatives, the more info they have the better. Patti

Wow, what fabulous results! How did you hear about it? After reading your post, am I understanding correctly that you're not on any medication right now? Why haven't any of the Dr.'s ever mentioned this? Can you find it in a drug store? I'm going to call Chrissy's Dr. and ask him what he thinks of it and whether it would be an option for her. Thank you for the information, very interesting. Patti

We're with Melissa on this one. Dr. Robert Shields at the CCF is wonderful. In fact, since Dr. Grubb hasn't been so available lately, we've been seeing Dr. Shields every three months. He'll take his time with you (similar to Dr. Grubb) and is very knowledgeable and understanding. Hopefully you won't have to wait too long to see him. Patti

Hi, Are you talking about going to the CC for a TTT or going to the Clinic to see a specialist? If you can, check past postings on Fetnat Fouad-Tarazi, M.D. She does the TTT for patients, but isn't the greatest on follow-up care. Here's her web-site. http://my.clevelandclinic.org/staff_direct.../Staff_637.aspx. Chrissy see Dr. Robert Shields there, he's a neurologist and we love him. We were just there yesterday, he's very helpful, listens and doesn't rush you. I'm not sure how long of a wait it is to see him though. I hope this is of some help to you. Patti

This kind of stuff makes me absolutely crazy!! Chrissy received a ticket at her own college for the same thing. There were no spots in the student lot so she parked in a handicapped spot, with her handicap sticker and lo and behold the almighty rent a cop gave her a ticket. They're not worth the time or energy, but if cost weren't an issue, wouldn't it be nice to make a photocopy of EACH AND EVERY piece of medical information you have on yourself (MRI'S, CAT scans, lab work, etc.) and throw that at them! I'd love to see their faces! Although knowing the arrogance of most of these schools, it won't phase them. (I'm not too bitter, am I?!!!) Like I said they're not worth it, it just makes me so angry that you have to prove yourself to them. Good luck with appealing---don't let them get to you and whatever you do DON'T PAY!! Patti

I copied this from "Prohealth's" message board. I searched our site and there was some talk about methylation back in Feb., but nothing since. If anyone has the time to read this, do you care to decifer it? REVERSING AUTONOMIC NERVOUS SYSTEM DYSFUNCTION BY POTENTIATING METHYLATION" It basically explains that Autonomic dysfunction can be helped or even reversed by forcing the continuous process of methylation. Here is the abstract - the article is long, so skim through if you like. http://www.freepatentsonline.com/y2008/0045448.html Patti

Sorry, I just saw the link on the Chit-Chat forum--We're listening now! Patti

As I was searching Echinacea, I saw that a few of you have had trouble taking it and some of you have taken it w/o any problems. Is there a specific reason why it would bother someone with POTS? How about Vitamin C. We thought they might help kick start her immune system Anyway, seems like chrissy's POTS doesn't care for it much, or at least we're blaming it on that. Chrissy just went to an allergist/immunologist again at the recommendation of her ENT Dr. He's so *&^%&*(( arrogant! Her ENT Doc suggested she get her immune system checked again since she's still having 'sinus infection symptoms' w/o having a sinus infection. We also mentioned Mast Cell Activation Disorder and he proceeded to tell us that he's never heard of it AND that it was pretty ridiculous that we even think that she has any type of mast cell disorder. He had the attitude of the 'how dare we question his knowledge'. Anyway, he ordered the blood test and 24 hr. urine test to pacify us and shut us up. My feeling was to just get the test results and go to another Doc at the Cleveland Clinic who specializes in Mast Cell. We see him at the end of September. Chrissy has many of the symptoms of the disorder, but of course, 'there's NO way she could have this', especially, since 'I've never heard of it! ARGH PATTI