PattiL

Hi Melissa, When people expressed their interest, did you get an idea of where everyone would be coming from? I would be happy to make arrangements at either the Mayfield or Beachwood library if that is convenient for everyone. Either one of those would also be close to a variety of restaurants if anyone would want to do that later as you suggested. Let me know and I will start calling around to see about availablility of days and times, then I could post and maybe have some type of vote on what is best for everyone? Patti

Hey Melissa, It was me that had e-mailed you way back when. Sorry we never set anything up...I'm pretty stumped on where to meet without having to go to a restaurant, or having to pay a high price for a meeting room. I'm still willing to help, or whatever, to try and make this happen. Kim and/or Melissa, if you need anything to get this going, let me know, I'll be more than happy to do whatever. Patti

Hi Diana, I'm so happy for you that you'll be part of Mayo's study. Please keep us all posted. I sent you a private PM concerning this also. Good Luck, Patti

Hi, My daughter Chrissy is in a dorm this year for the first time. I would definitely go to the disabilities office and register with them. Go for an in-room air conditioner, even if they have central A/C--there are so many days where everyone else is cold but you may be sweating to death! Chrissy requested a room near the bathrooms, definitely first floor, and as far as the bathrooms go, maybe there would be a window close by you could open? Her showers also have two separate sections, one with a bench that's in-between two shower curtains and the other with just the shower. You may also want to request a bench be put in the shower. (The school should HAVE to supply both the bench and the separate A/C unit. She also requested a medical single. not only because of the issues of taking naps, etc., but you can also regulate the room temp. to accomodate you. Chrissy was afraid if she had a roommate that she'd freeze them out. Don't be afraid to ask the disabilities office for any accomodations you need, that's what they're there for, to make it easier for you to get through your classes. You can also ask for extra time taking tests, etc. There is another web-site that might be really helpful to you also.... it is http://pediatricnetwork.org/ , click on the 'forum' and it has a lot of helpful information for college age students with disabilities. Patti

Hi Dayna, I'm not sure if the Electrophysiologist will do anything different than a neurologist, but Chrissy has seen both, and I like to get as many opinions as possible. Even if the Dr.'s agree on your treatmen, to me it's more of a peace of mind to know that we're going in the right direction. Chrissy has seen so many specialists over the last few years, and I really can't say that I'm sorry we went to any of them. Even if we didn't care for them, there was probably a little bit of information we got from them to add to our 'notebook of knowledge' about POTS. If your ins. covers it, in my opinion, I'd go for it. Patti

Sunfish, So glad to hear that you're home Hope you're feeling better---keep us posted!! Patti

Actually, Chrissy has had great luck when having to go to the ER. I don't know if it's b/c we go to University Hospitals in Cleveland where Dr. Chelimsky is based out of or what..but everytime we've gone (probably just once a year), they've actually been very knowledgable and helpful. I wish I could say as much for some of our Dr.'s visits though! We've definitely had our share of them telling us 'it's in her head' type Dr.'s. I guess I feel pretty fortunate we live close enough to Cleveland, and have an actual 'POTS' Dr. there, although we've never actually had any interaction with Chelimsky directly at her ER visits, it must be that b/c he's there that the staff is somewhat aware of what to do. Patti

Here's information on Dr. Chelimisky from the Dinet physicians list. My daughter saw him, as have many from the forum, only problem is it might be a long wait to get in to see him. Dr. Thomas Chelimsky, MD Assistant Professor of Neurology Director, Autonomic Disorders Division Director, University Pain Center Case Western Reserve University Cleveland, Ohio Phone: 216-844-3495 Fax: 216-844-7624 Autonomic Lab: 216-844-3496 Pain Center: 216-844-1476 Patti

Melissa, Hope you're feeling better soon. Our thoughts and prayers are with you. Patti

Hi Linda, Just adding my two cents to what everyone else already said--besides telling the bus driver, I would give him information written out, i.e., emergency numbers, what your medical situation is , etc. Hopefully he won't need any of it, but just in case, that would be one less thing you'd have to worry about. Please be safe, be careful and most of all, stay upright! Let us know how everything went. Patti

Hi Melissa, Welcome to the forum! My daughter is also going to college for an education degree, only her's is for elementary ed. We have also tossed her decision around--wonering whether she should pursue early ed or not. She has also had some difficulties with the school, but they have been more with teachers that just don't understand (or care to) the illness. You must be very frustrated with the school pulling something like this on you. I'll tell you what I've told my daughter. Follow your dream. She knows it could be a rough road ahead, but she's always wanted to be a 2nd grade teacher, so I think she should go for it. She is presently a juinor and so far the school has been accomodating as far as her observations and such. They even told her she could take one whole year for student teaching, rather than getting it done in a semester. Unfortunately, she would be unable to go to class in the mornings. I applaud you for working so hard and getting good grades, I'm sure it's not easy at times. I've told Chrissy (my daughter) that even if she's not able to have a class of her own, having an education degree can still be used in so many ways. Private tutors get paid a great amount in our area, you could possibly sub, as lucky charm said. Also, we've heard that there is a great demand for teachers in a hospital setting for children who have to be there long term. Go for it Melissa, finish your degree, and shame on that Dean for trying to have you switch majors when you're to graduate this year! Good Luck, Patti

Sophia, Hi, I've actually had two girlfriends that have had this procedure done and both would do it over again without hesitation. They each had it done on a Friday, had a low key weekend and were back to work by Monday. I myself have been going through something similar (had my period for 53 straight days--very heavy). My Dr. has started me on hormones for now, but, if this doesn't work, she wants to do an ablation. My girlfriends and I don't have POTS, but I thought I'd let you know about their experience. Patti

Hi Nicole, You're right, everyone has a different reaction. The first summer Chrissy had POTS there was no way she could've gone to the beach. Since then, she's been able to go periodically IF the humidity isn't too high. For the most part she's always in a nice a/c room! Even in the winter in her dorm room the a/c is going. Hopefully, where you live you'll be comfortable enough to go and soak up some rays sometimes. One thing that was helpful for her--those spray bottles with a fan attached to them, it really helped cool her down. Patti

Thanks everyone, I called Dr. Grubb's office too, just to be sure. They said there shouldn't be a problem getting it even though she's on florinef..time will tell! Hopefully she'll be reaction free. Patti

Hi, Since Chrissy is going into teaching, she is required to have a TB skin test. She had a TB shot in 1998 and the Dr.'s office says it's good for 10 years, but she needs to have a skin test every year. I was just reading that you might not get a true reading if you are taking a corticosteriod. She's on florinef and can't go off of it for any length of time. Just wondered if anyone with POTS and/or is on florinef, has taken the skin test. I don't know if this is something she needs to bring up to the school or not. I'll call the Dr.'s office in the morning to see what they say. Also, if anyone's had the test, did you have any reactions to it. When Chrissy had the test she didn't have POTS. Thanks, Patti

Hi Diana, Thanks for your quick reply. Chrissy wasn't able to stand the restasis, she said it felt like she was pouring acid into her eyes. They even gave her another drop to take some of the sting out of the restasis, but it didn't help. She couldn't even close her eyes to make them feel better. Her Dr. said the same as you, that it would take 2-3 months for it to have the full effect. She refuses to try again since it hurt so much the first time. We're going in on Thurs., we'll see if there's any other suggestions before going with the plugs. Patti

Hi everyone, The saga continues...Chrissy is still having so much trouble with her eyes. They're constantly burning, red and achy with or without her contacts. She's been to a allergy Dr.--nothing, so we're assuming this must be POTS related like everything else! She's had two shirmer's tests (which determine just how dry your eyes are), she's tried all types of eye drops including restasis. Nothing seems to work. We're seeing the opthmalogist again this week and I think the next step is going to be the plugs. I hope they help, but just wondered if anyone else has had them and with what kind of luck? Patti

Hi everyone, Chrissy also has a twin, a brother, who is healthy. They were also preemies, born at 30 weeks--3 lbs. 11 oz and her brother was 3lbs. 9 oz. I've asked every Dr. we've been to if there is any correlation between being a preemie and POTS and they've all said they didn't think so, including Dr. Grubb. They were in the hospital for about 6 weeks b/f coming home. Up until Chrissy was l5 yrs. old they never had any other problems, except for the normal childhood illnesses. I wonder if they've done any thorough studies on it though. Patti

Hi everyone, Kitsakatsa--Had you tried regular Zofran pills before going to the injections? Chrissy was on the pills for two months and they had absolutely no effect on her. No one ever suggested the injections. In fact, we went to our local cardiologist (our in-between Dr. between Grubb visits) and she suggested taking Benadryl. She said in a lot of patients it actually helps with the nausea. Just wondering about those injections, I've never heard of them. Was it Dr. Grubb who prescribed them? Patti

Hi Shannon, My daughter is 20 yrs. old also, has POTS, and is in a dorm too. She doesn't have a tub in her dorm's bathroom. it does have a shower chair in there, but she even said it's so gross she can't sit on it. I told her to bring a rubber mat (the kind you'd use on the bottom of your bathtub and put it on the chair. At least then she wouldn't be sitting directly on the chair. Ask the disability office if you can have a chair put in the bathroom and left in there. They should provide one for you. I don't think some of Chrissy's friends understand how sick she can get either. She's actually had more trouble with some professors than kids though. I'm sorry your friends made you feel defensive. Chrissy feels the same way. Since you all look great I guess it's difficult for people to understand that you don't always feel great. Are you going to school full-time? What is your major and what year are you in? Good luck, Patti

Hi, The only thing I can help with is a pediatric neurologist. Are they from the Cleveland area? The Dr. we know is in Mentor, which is about 30-40 minutes east of Cleveland. He's fabulous. He's with the UH system however, I don't know if he refers to the CC or not. His name is Dr. Morris Levinsohn 440-946-6725. Patti

Hi Melissa, I totally agree with Dizzygirl. Of course, it depends on where you live and whether you'd want the expense of going and possibly not seeing Dr. Grubb--- but we've seen Beverly a couple of times. She's extremely knowledgable and if you go on a Tues or Thurs. Dr. Grubb is in the office and might be able to stop by to speak with you too. Good luck, hope you can get in sooner. Patti

Wow, I would have never guessed there was such a thing. How sad that there are people out there that must be that bored with their lives to go to various forums and do this! Michelle, Melissa and Nina--thanks for all that you do--whatever you decide I'm sure will be in the best interests of everyone. Patti

Hi, Well, Chrissy tried 10 mg. of Adderal XL and she was totally out of wack! Said she felt high, but her palpatations were better. Dr. Grubb sent another script for 5mg (she only takes one in the morning). She's on her second day now and again, helps with the palpatations, but she doesn't notice any difference with brain fog, concentration, etc. She doesn't feel as 'wired' as the 10 mg, but still not great, also doesn't have much of an appetite. What we'd like to know is--- is this a type of drug that you just have to get used to, or if it's bothering her now, it'll bother her in a week. She's still home from winter break, but starts school on Tues. and we don't know if we'd be quiting too early if she stops taking it now. I don't know if we just don't give her body enough time to adjust to some of these drugs or not. Did it take time for all of you that have been on it to adjust? I've looked up the side effects and it does say that it could take a few weeks for them to disappear, but that's for patients with ADD--didn't know if it would be the same for POTS patients. Thanks, Patti

Assuming you have insurance and want them to pay, I'd call the customer service # on your insurance card and see what they say. But, I would think Morgan's probably right--they might/can't do it w/o a script. Patti