PattiL

Hi Kim, I'm assuming you saw Dr. Fouad at the Cleveland Clinic--if not, disregard what I'm saying. If it was her, we had the same experiences with her as have many others. She is great at diagnosing--but not follow-ups. If you live in the Cleveland area, have you tried Dr. Thomas Chelimsky? He's much better at follow-up and his assistant has been helpful also. If you want to see Dr. Grubb but have to wait until summer, I would try seeing Beverly, his assistant. You can get in much quicker and if you go on a Tues. and Thurs. you might even get to see Dr. Grubb. Hope this helps. Patti

Congratulations Jessica!!! How exciting for you both! Have you picked a date yet? Alex is gorgeous! Good job!, Keep those pictures coming and keep us posted on when the big day is. Patti

Hi Elizabeth, I'm so sorry you're going through this, especially around the holidays it must be very difficult. My daughter has POTS and was dx'd prior to her 16 b-day and also missed her entire sophomore year. She is 20 yrs. old now. My youngest son, who is now 16, had a lot of extreme stomach pain until he was about 14 1/2, and he too saw Dr. Howard Hall. To this day, he'll still say that was his favorite Dr. of all time. The breathing techniques, bio-feedback, etc. didn't do much for my son either. He was put on florinef and elavil, and felt relief almost immediately. This was after years of not knowing what was wrong and countless Dr.'s later. Have you had MRI's, Cat scans and the like done? Can you go to either UH or CC? How about Dr. Cohen, he's the pediatric neurosurgeon at UH. If you live on the east side of Cleveland (at least I'm assuming you live in Cleveland), we have a wonderful neurologist we see in Mentor. Maybe a second opinion would help? He's very aggresive as far as getting to the root of a problem, he has never let us down and he isn't shy about ordering tests. Could his pain be related to something as simple as a pinched nerve? Or some type of siatica (sp?) If you believe in any way that your son may have POTS, call either Dr. Thomas Chelimsky at UH or Dr. Fouad at the CC. They will do a Tilt table test and are both very thorough, if you need other testing done they will do it. Dr. Fouad isn't the greatest at follow-up, although some people have had better luck than others. Once you get a TTT--and if it's positive, I would make an appt. with Dr. Blair Grubb in Toledo. Bring all your test results to Dr. Grubb or Beverly (you can probably get in to see her fairly quick). We have had the best luck with Dr. Grubb as far as which meds have worked best for our daughter. If you need any phone numbers or would like to talk...please PM me and I'll give you my phone number. I wish the best for you and you son. Please tell him to hang in there. My daughter was so upset b/f we had a dx's too, it WILL get better. Hopefully it won't take too long to find the right Dr. that can help him. Patti

Hi Corina--Beverly said it should help quite a bit with Chrissy's fatigue and concentration. It is suppossed to constrict the blood vessels and pump more blood up to your brain. It is an amphetimine (sp?) and you have to get a script for it from your local Dr. on a monthly basis. It is normally used for people with ADD or ADHD to calm them, but has the opposite effect on POTS patients. According to Bev, Dr. Grubb has prescribed this for a lot of his patients with great success. Chrissy's going to take her first dose today. I'll let you know how it works for her. Patti

Lisa, Chrissy and I were there yesterday also. I'm so sorry we missed you. Our appt. with Bev was at 3:00, but I think it was after 4:00 before we actually saw her. She's such a sweetheart. Our next visit is in 6 months, but when we left Sherry had already gone home so I don't have a date yet. Next visit will be with Dr. Grubb, we'll see how the new meds work for Chrissy. Hope your new meds work for you too. Patti

Hi, We saw Beverly at Dr. Grubb's office today and she prescribed Addreall XL 10 mg for Chrissy. I've read all the past posts and it seems like most of you that are taking it say that it's really helped tremendously. . Has anyone had any bad side effects from this drug that has POTS? One of the posts from someone in Canada (sorry, don't remember who it was) said that it was taken off the market there b/c of the deaths linked to it. I'm always leary of trying new meds, but Beverly assured us that this med was safe. I've been reading other articles about it, but wanted to check in with everyone here to see what you thought of it. Chrissy's just been soooo tired these days, it would be great to see her get a boost of energy. Also, I noticed that alot of you take it really early in the morning. The earliest Chrissy ever gets up is probably 9:00 am, more like 10:00-11:00 am--will this be too late where it would be difficult for her to sleep at night? Does it also help with getting yourself moving quicker in the mornings so you have more daylight hours in your life? Thanks everyone, Patti

Hi Nina, Glad to hear you're feeling better. Don't push yourself by going back to work too early. You'll be in my thoughts and prayers. Patti

Thank you so much for your replies. The situation with the professor actually ended up working out. Chrissy contacted him at the time he wanted her to come in and told him AGAIN that she could not enter the building w/o feeling ill. Somehow his superior contacted him and must have shook some sense into him, b/c the next time the disabilities person called him and said that they would watch over Chris in their building, he said he'd have the test sent over asap! He still needs many lessons on how to handle these situations though. He was speaking to the disabilties personnel on the phone in his office, used Chrissy's name and was discussing the whole situation in front of another student. He must have missed the class on confidentiallity!! India--we did provide all necessary documentation in the beginning of the year. They have been very accomodating as far as dorm room location, a/c in room, etc. This one particular teacher is the biggest problem right now. I will definitely look into the school's ADA policy though. Sally--Thank you so much for the links, very helpful. We're going to Dr. Grubb next week and I'm going to see if we can get more documentation than we already have from him. Patti

Ok guys...problems again with same professor. Chrissy was suppossed to take her final today at 1:00. She was studing in one of the buildings with some other kids from her class and she called me saying that she was getting extrememly sick from the heat. I could tell from her breathing and she said she was sweating even though she had on a thin t-shirt and everyone else was studying with their coats on. She went to talk to the prof. explaining that she couldn't be in the building any longer or she's pass out, or who knows what. He says' oh, you're going to have a seizure?" no, I feel too hot and I might pass out, "oh, well I'd call that a seizure or an episode". OMG. anyway, he says she could come down to his office at 3:00 and she could take the test in his office. She was standing in his office during this conversation and was too hot!! what couldn't he understand. Anyway, here's my question. Disabilities is pretty much saying that the professor has the right to dictate where and whom will proctor the test. I don't know if the girl in disabilities is running away from the problem b/c she's afraid of the old hoot or what. The prof. wants Chrissy to take the test in his office, which he says is cooler b/c HE has to wear a sweater. Well, most 75 yr. olds are cold in a sauna! I am so upset right now. My husband told Chris to call the prof at 3:00 and tell him that disabilities wants her to take it in their office (they did suggest that). But, we know he won't leave his building b/c of his disabilities. He can't walk, needs a walker and can't drive, his grandkids drop him off and pick him up from school. Are we getting the run around, or can they not accomodate her in a cooler setting b/c of this idiot? If he won't budge hubby is going to call his boss immediately and see if something can be done--what are Chrissy's rights? THANKS SO MUCH!! pATTI :

Hi, My daughter Chrissy also got POTS from a viral infection in 2001 after a bout of broncitis. Her symptoms were mainly weakness, fatigue, fainting and the general flu-like feelings. She got sick in Oct. and was dx'd through a ttt in Dec. The process was pretty quick for her I think b/c we live near Cleveland and there are a few Dr.'s available to us that specialize in POTS. The first Dr. put her on a beta-blocker which really didn't help, then Dr. Grubb took her off that and put her on florinef. That was a great turn around for her. Chrissy also missed most of high school. This happened in her sophomore year, which she ended up being tutored (at home) and she basically never went back to high school. She spent her jr.and sr. years at the community college, they were great in accomadating her with afternoon classes and most anything else she needed. Chrissy's symptoms come and go--she definitely goes into a POTS hole every time she gets a cold, sinus infection, etc. Her symptoms seem to change too--and I don't know if it's a sign of getting worse or better. Her nausea has either gotten better, or she's so used to it that it doesn't bother her as much. That's all I know is that Dr. Grubb told us four years ago that she should outgrow POTS, b/c she did get it after a viral infection and he said by her early 20's he was hoping it would be gone. We're still waiting!!! We're going to see him next week, so I'm going to ask him about this. Patti

Miriam, I am so sorry for your loss. My thoughts and prayers will be with you. Patti

O.K. guys, you've convinced me not to wait. I'm waiting for Chrissy to send me a copy of her conversations so that I have all the information I need in front of me before we call. My husband will proabably be the one calling, he's much more articulate and seems to be able to get under people's skin better than I. To add salt to her wounds, another one of her teachers yelled at her today for not coming in to speak with her. This teacher sent all the kids in the class an e-mail stating they could come in today (which is their normal class day), or tomorrow between 9 and 1:30. Chrissy called her for whatever reason I don't know and mentioned to her that she'd stop in tomorrow. The teacher started yelling and said "tomorrow is only for the students who have class tomorrow--not for you, I just didn't specify that on my e-mail b/c it was simplier to write this way" WHAT?!?!?!?! Where are these idiots coming from. This is a private school for crying out loud--stupid me, I thought b/c we were paying out of our *** we'd have quality teachers? ARGH!!!! I'll let you know what happens after hubby speaks with them. I know I wouldn't want to be on the other end of that conversation! Patti

Thanks for all your comments guys! I think I'm going to respect Chrissy's wishes for now and stay quiet. She should get some more information on Thursday when she has the class again. I just hope and pray he doesn't say any other unkind remarks. He's older (in his 70's) and should know better--but it takes all kinds I guess. I just don't want her to fail the class. We're actually both hoping for an incomplete, then maybe she could finish everything up during Xmas break (just what she wants to do!) Thanks again for your support, it really means alot to both of us. I'll keep you posted. Patti

Hi everyone, Flames are shooting thru my veins right now. Chrissy had an appt. with her Math Prof. late last week to try and work out how she should catch up on her missing work. MOST of the prof's have just given her a little extra time since she was out for probably a good three weeks total. It just happened she missed more of this class b/c it's a morning class AND not feeling well. (He himself just missed 6 weeks, I believe due to illness). She went over the POTS situation again (Disabilities and she herself gave him info in the beginning of the semester). She also gave him one of the new POTS pamplets, which he glanced at and gave right back. He then said, "Have you considered the fact that maybe you just don't belong here and shouldn't be attending a four-year college!" "Just my opinion". She said it took everything in her not to start crying . She's trying so hard. She did very well in community college and will be getting A's or B's in her other classes. I don't want her to have this idiots comments stick with her. I am furious---but keeping my mouth shut for now. She and some other students spoke to the head of the Math Division at the college today and then she privately told him her situation. (He gave them a test today, a week before finals, which I guess is not permitted unless it's on the sylabus, which it wasn't) Of course, I'm sure for legal reasons, he didn't comment too much on what the Prof. told her, but said he'd speak to him and try to work something out for her. BUT, he said the final decision would be the Prof.'s. Which I find hard to believe. I would love to write a letter to the dean of the school, disabilities, head of math dept. and an attorney, if I need too, but Chrissy (wisely I think), says to wait until she gets some type of answer back from the head of the dept. Have any of you run across anything like this? I will wait until she gets a grade, maybe she'll get an incomplete. Who and what should I do first. Thanks guys, Patti

Hey Jennifer, Great News . This is a great time of year to go there--we went in December when our kids were little too. Short lines, not too hot, etc. So glad you had a great non-potsy vacation!!!! How encouraging!! Patti

Hi everyone, I am just wondering, as a caregiver, how do you manage working? I've been very fortunate that I really haven't had to work while Chrissy was at her worst, but it's time I start. Chrissy is staying at a dorm and that is so much better than commuting, but there are so many days when Chrissy is unable to go to class, much less able to drive herself to her Dr.'s appts.. I fear that if I get a job I'd get fired within the first few weeks from taking off so many days to take her. My background is secretarial/ad. asst. I'm thinking I could probably work for a temp. agency and just go by a day to day basis. Have any of you done that? How about those of you that work full-time? Are your bosses just very understanding? My husband can take off once in a while, but, he's not 'into' the POTS as much as I am and I'm afraid he'd miss something. I love being available to her whenever she needs me and her college is only 40 minutes from home. She loves being on her own and has definitely become more independent in so many other ways. I am so proud of how she has handled everything with her professors, etc. I'd appreciate any suggestions/ideas. Thanks, Patti

Nina, Happy belated birthday! Hope you had a wonderful day and THANK YOU for all your insight and work you do to help those of us with our many. many questions! Patti

Hi Melissa, Though I haven't been posting recently, I have been lurking . I would love to meet all/any of you--I'm sure Chrissy would love to also. Weekends would probably be best for us..she has Fridays off of school for now, but I'm not sure what next semester brings. We live in Lake County, but it wouldn't bother me one bit to travel wherever. Whatever is most convenient for everyone else is fine with us. Mornings would not be good..hahaha, a restaurant would be fun, but we really wouldn't care. It would be great to just meet a lot of you!!! This is a great idea, I hope it can be pulled off. Let us know when and we'll be there! Keep us posted!!! Patti

Hi Louise, Same boat here. Chrissy called me the other night crying about projects due and she can't get them done, doesn't feel well, doesn't know what she's going to do, etc. etc.!! She has one professor I'd like to bang against a wall. Everytime she's missed his class he has told her to get information from another student so she can catch up. She's tried e-mailing him each time with no response. THEN I told her to call disabilities and see what they can do. She did and lo and behold, he said "I'd be more than happy to help her anytime". She's written him twice again--still no response. Then her last e-mail I told her to mention the disabilities office and he answered immediately. I'd like to think he just can't place Chrissy with her illness and the disabilities office, BUT I BELIEVE otherwise. Round and round she goes. With most teachers she hasn't had a problem and they really do try to help her. It just seems that she has to remind them repeatedly about the situation and for what we're paying at JCU this shouldn't be happening!! It is very stressful for me (I know for her as well, of course), when I can't do anything about it though. Last week I had to run down to the school because Chrissy hadn't sleep all night b/c she said her chest hurt and the palpatations got so bad she was really scared. I did intervene then and called disabilities myself to tell them that I'd be taking her to the ER and if she could contact the teachers for us. That worked out great. I would like to find some way that these teachers don't need to be reminded constantly. They have a letter from Disabilities, they have a very detailed letter from Chrissy and she's spoken to each professor individually---but there's still some kinks in the system. Louise, if you find something that works--PLEASE let me know. Patti

Hi Jennifer, There's been some posts on this recently I think.....if you're seeing Dr. Fouad she's great at diagnosing, but not so great with follow-up. If you're seeing someone else there, then I don't know what they're like. Dr. Thomas Chelimsky is at UH, he will also dx, but he is much better with follow-up care. It is still very difficult to get in to see him though. Dr. Parvin Dorostkar doesn't do diagnostics (sp?), but we see her for follow-up. She is very open to working with Dr. Grubb, and since it's so difficult to see him, she's been a great back-up. She is listed as a pediatric cardiologist, but she will see adult patients with pots (at least she was doing that). She is also very familiar with POTS. Hope this helps some. Patti

Paige, Please take care of yourself. I'm sure your family wants what is best for you and they love you deeply. YOU ARE NOT A FAILURE. Most of us have gone through these feelings at some time or another. Please get some type of help to make yourself feel better. Talking to the right therapist is definitely a step in the right direction. Please, please take care of yourself. You are going through a difficult time right now, things will look better. I will be thinking about you and am sending lots of prayers your way. TAKE CARE () () () () HUGS Patti

HI, When my daughter became ill in her sophomore year, her school was fabulous. I contacted her counselor immediately when she first became ill, even b/f we knew she had POTS. They worked with me from day one. She started feeling ill in October 2001after a bout of broncitis and never returned her entire sophomore year. The school was the one that suggested using American School for correspondence classes. There were only so many credits per year she was allowed to take through them---I'm sorry but I can't remember how many. She didn't feel well enough at all to have any tutoring or correspondence classes until about Feb. 2002. She then had a tutor come to the house (school paid for in its entirety)--we paid for any American School classes she took. In her junior and senior years of high school she went to our local community college part time and took classes thru American School. She received high school and college credits at the same time (all paid by the school district including books). She is now in college staying at the dorm and is doing much better, although still has her bad days AND she can't wait for the COLD weather!! There is another forum that deals alot with school-age children that have POTS, fibro, CFS that might be helpful to you also: it's www.pediatricnetwork.org. You can e-mail if you have any other questions also, I'd be glad to help with what I can. Take Care, Patti

Hi Melissa, Although she is a cardiologist, not a PCP, Dr. Parvin Dorostkar is really great. She IS mainly pediatric BUT, she has many adult patients also. She is very familiar with POTS and will work with Dr. Grubb. Chrissy is seeing her as a secondary cardiologist. She is at Landerbrook (which is off Cedar Rd. by Brainard) and at Rainbow (UH). I don't know how easy it would be to get in to see her if you need her on a regular basis, but I just thought I'd pass her name on. Her # is 216-844-3275. Good Luck with your appt. with Dr. Grubb--glad you got in!! Take care, Patti

Hi, I don't know where you're going for your TTT, but both of my kids had theirs done at University Hospitals in Cleveland and neither had any type of IV. My daughter also had another one done at the Cleveland Clinic, no IV. So, I agree, call the testing center where you're going to see how they plan to do the procedure on you Take care, Patti

Hi, My daughter is 19 yrs. old and has POTS. You will find soooo much useful information on this site. I don't know what I would've done without it. Welcome, Patti