PattiL

Hi, Does anyone know of any electrophysiologists in the Cleveland area, Ohio, surrounding states? Chrissy normally sees Dr. Grubb, unfortunately lately he's not even returning phone calls from her reg. Dr. Dr. Chelimsky of University Hospitals in Cleveland (don't know if he's an electrophysiologist) but it's about a 6 month wait to see him. We don't know where to turn to next. We are seeing a Rheumatologist/immune Dr. next month to see if she can help with Chrissy's fibromyalsia. Is there any other Dr.'s that anyone knows of that deal with your immune system? Chrissy's so much worse during this last sinus infection that won't go away. She can't tell if it's just her sinus' or POTS symptoms or both that are making her feel so terrible. Nausea, not wanting to eat or drink and weakness are really bad this time. Thanks everyone. Patti

Hi everyone, My daughter Chrissy still has her sinus infection from over a month ago. Her pediatrician (she's 19, but he knows her history so well we still go to him) ordered a CAT scan of her sinus' and lo and behold, he said it's the biggest polyp he's ever seen. Do POTS people ever do anything half***! Anyway, tomorrow we see the ENT Dr. for the good news (Ped Dr. thinks surgery). Just wondered if anyone has had this surgery before and how bad it is for POTS patients. We've spoken to a couple of people who've had it and they said that the surgery wasn't fun, but it really has helped with their sinus infections and pain. Maybe this is what is causing her eyes to burn? and the pressure around her eyes? Chrissy is also having her wisdom teeth out right when she's done with school in May--gee-- maybe we could have them both done in one day!?--just kidding. Any info would be appreciated. Patti

Hi Lynna, My daughter was 16 when she was diagnosed with POTS. We live in Ohio and are quite lucky that we have University Hospitals and the Cleveland Clinic for testing. If you do want testing, I would go to to UH and see Dr. Thomas Chelimsky. My son also started seeing him when he was 13 for a milder form of POTS. In my opinion he has a much better bedside manner than the Dr. at CC. We also see Dr. Grubb. We had an appt. in Feb. that they cancelled due to his illness and has not been rescheduled yet. Unfortunately, I believe that there is quite a long wait to see Dr. Chelimsky now also, maybe due to the fact that Dr. Grubb is out of commission for awhile? I know Dr. Grubb is seeing patients, but I do not know if he is seeing anyone new. He is an absolutely wonderful, compassionate, caring Dr. your son would love him. My daughter was unable to walk unassisted when we first saw him. Our first consultation with him was 2-3 hours. I hope you can get in to see him. Try to make an appt. no matter how far into the future it may be and then still search around for another Dr. in the meantime. Hope this helps. Patti

Hi. Katherine, exactly what does an electrophysiogist do? That's one of the few doctors that we've never been too. Thanks.

Hi everyone, My daughter Chrissy, who's 19, seems to be having more problems lately with her POTS. She's presently only on florinef twice a day, but she says it almost feels like she's not taking it at all lately. This last sinus infection of hers is lasting over a month and she's been on two treatments of antibotics, still isn't getting her strength back. Dr. Grubb is who she usually sees. She was suppossed to have an appt. in Feb. but they cancelled it b/c of his cancer (understandably). My son sees Dr. Chelmsky in Cleveland and he has to wait until Sept. to see him. Does anyone have any suggestions on who would be their next choice of Dr.'s. I've read a couple of posts where people have been disappointed with Dr. Low at Mayo, who's next? We'll go anywhere. I know we'll have to wait awhile for an appt., but I might as well make one now. Will Grubb confer with our reg. Dr. to figure out what to do next? I've left a message with Grubb's office. Thanks for any input. Patti

Hi everyone, I looked up past posts on Provigil and couldn't find any info on how long it took anyone to notice any significant changes in their level of fatigue. Chrissy has been on 25 mg. for one week and now 50 mg. for about 10 days and hasn't noticed any changes at all. She's not feeling well again, but sometimes we never know whether it's a new drug she's taking or if she's truly getting sick! Do you guys thinks 2-3 weeks is enough time to give the medication, or should she keep taking it for awhile longer? We're going on flight out of town next week and don't know if she should quit now, in the hopes that if it is the drug that's making her feel crappy, she'll be better by then or if she should just stick with it. Thanks guys. Patti

Hi Morgan, I'm so sorry to hear this med is causing you so many unpleasant side effects. My daughter (who has POTS) has just started taking it, so far no improvement with energy, but thankfully no side effects yet either. I posted on the topic of Provigil on February 14th, you might want to look up the post that Mighty Mouse wrote, it was very helpful for us. Patti

Thanks Nina and Kristen. We went to Chrissy's Dr. today and he prescribed it, so we'll give it another shot. Hope for the best! Patti

I thought I saw this as a topic before, but I can't find it anywhere. Has anyone had any luck with Provigil? It is suppossed to keep you more alert and hopefully eliminate some of the brain fog and trouble with concentration. Dr. Grubb prescribed it for Chrissy over a year ago and at the time she was taking a combination of meds, so she doesn't really know if it was helping her or not. She's only taking florinef now, so we were going to ask her primary Dr. to give it another shot. Any comments would be appreciated. Patti

Hi, My daughter got hers from www.laurenshope.com. The company started making these after being approached by a little girl with diabetes and her mom asked them to design a medical ID braclet because the regular medical ID's were 'ugly'. They are beautiful, but unlike the others, they are NOT connected to any type of medical alert number. It has on it that she has Postural orthostatic tachycardia syndrome and a list of all her allergies Patti

Hi, My name is Patti, but it's my daughter Chrissy that has POTS, here's her info: 1. Chrissy 2. 19 yrs. old 3. Dx in 2001 with POTS after a bout of bronchitis. Missed her entire sophomore year of high school and was home schooled by a tutor that year. Went to school part-time in her juinor year, went full time in her senior year and is now a full-time college student. When she first became ill in Oct. 2001, she couldn't walk unassisted, take a shower or go to the restroom. After seeing Drs. at the Cleveland Clinic and University Hospitals still wasn't doing very well until we went to see Dr. Grubb, he changed her medication and she slowly began getting somewhat back to 'normal'. 4. 16 yrs. old 5. Chardon, OH 6. Brain fog, dizziness, fatigue, light headed. Terrible time in the mornings still. Has all afternoon classes. Extreme burning in her eyes every morning--can't wait to get Lasik surgery when she's old enough!Nausea. Very symtomatic in the heat, indoor or outdoor. 7. In the afternoon and evening she functions the best. Loves the cold weather. 8. Reglan--ER visit for us, she got a distonic reaction from it. Beta-blocker--made her feel worse, anti-depressants, also made her feel worse. Can't remember all the other meds that they had her on. 9. Florinef--only med she's on right now and seems to help the most. Patti

Thanks for all your replies. Chrissy has been checked for her thyroid before, but it has been awhile. Maybe it's time to have it checked again just to make sure. I hope at least the weather stays around the same temp. for awhile, that should help. Patti

My daughter and I used to post on NDRF (we posted as Chris85). Chrissy hasn't had a lot of difficulties, she's 19 yrs. old with POTS, but the weather does seem like an ongoing problem. We live in the Cleveland area, which lately has been around 10 degrees. Last week we were in the 60's in the afternoon and then it went down into the 20's. When it does that I can understand why she doesn't feel too great, but lately the weather's been so cold but she goes out to her car without a coat, has to turn on the a/c and open a window. She says she can't really feel the cold at all (she explains it as kindof being numb to it) and just feels really terrible. She hasn't mentioned her heart rate going crazy during these times. Could she be somewhat dehydrated? She's absolutely terrible about getting enough fluid in. I don't know what to do for her. We keep our house at a cool temp. for her (low 60's), she has a ceiling fan in her bedroom and bath and yet she's still so hot--especially in the morning when she's getting ready for school. She is currently only on florinef. We were to have an appt. with Dr. Grubb in a couple weeks, but they wrote to cancel the appt. I'm wondering if we should call an get in to see an associate, or just wait until he is better. Any suggestions on why this is happening and what I can do to help her would be appreciated. I dread the summer, as does she, she is so much worse then! Thanks so much! Patti