PattiL

Just wondering if anyone's had a menningitis shot and if you had any adverse reactions to one. I wrote to Dr. Grubb today asking him if it's ok whether Chrissy gets one or not, no answer yet, guess I'll call tomorrow and see. Patti

We live in Concord, OH, about 45 min-1 hr. east of Cleveland. Right next door to "heart of the snow belt" Chardon, OH!!. Patti and Chrissy

Hi Steph, My son was diagnosed with this about 2 years ago after years of testing, although he never once vomited?!?, but did state that he had abdominal migraines. He will be 16 years old soon. He was diagnosed by Chelimsky at University Hospitals in Cleveland after a TTT. He's had stomach aches since he's been about 4 years old. (I don't know if his diagnosis has anything to do with his sister having POTS also). Anyway, he was put on florinef and then effexor. Within a couple of months his pain stopped. He's still on both meds. Dr. Grubb agreed with the dx of abdominal migraines and that the meds were fine for him to be on and were definetly helping. I haven't looked recently, but couldn't find much info on abdominal migraines at all. Would you mind sharing who the new neurologist is that you're seeing at CC. I'm always looking for new Dr.'s for Chrissy, especially since we haven't been able to get back in to see Dr. Grubb. Patti

Hi everyone, I've looked up past posts on this, has anyone recently had their's out? She's had a lot of dental problems including root resorption, Nina I know you've had this too--don't want to get into details. Chrissy had hers out on Monday, 4 impacted, surgery went well. She came home, ate, drank, took her pain meds (vicoprofen) she got worse yesterday, which i heard was normal for the third day, but today, the fourth day, she's still so blah! She's suppossed to go to her graduation ceremony Sat. for her associates degree(even though she has a couple of summer classes, the ceremony is Sat.). Now I don't know if she'll make it. She took a shower tonight for the first time since Mon. and is totally wiped out. I know everything takes longer with POTS (recovery I mean). Do you guys think this is normal. I've heard of people w/o POTS being out of it for over a week after this procedure. She's still in pain but didn't want to take any more pain meds, just tylenol. Bleeding stopped after one day. Thanks everyone. Patti

Hi Alicia, Welcome to the Forum. My daughter (Chrissy) is also 19 with POTS. She was diagnosed when she was 15 1/2 and has improved greatly since then. She just had her wisdom teeth pulled on Mon. , so she's not in a mood for much of anything right now, but if you'd like I can have her e-mail you. She's just finishing her associates degree from our community college and will be staying on campus at a university nearby in the fall. You may have quite a bit in common. Chrissy has decided on Early Childhood Education for a career, I think she should follow her dreams, BUT I've also told her she should probably go to the career counseling office of her college for advice. I would think there's other things she can do (career wise) with this degree, but she should make sure if POTS gets in the way. We're from Ohio. This forum has been very helpful to us both. Read past posts and ask any question and someone is bound to either know the answer or send you in the right direction! Patti

Hi Steph, Good Luck to you today! We'll be praying for your quick recovery! Patti and Chrissy

Karen, Sorry to say for us, but we also had an appt. in early Feb. and were told the same. I've tried calling a few times, no luck. We're getting a little desperate too, so we are going to see a new cardiologist this month, we'll see what happens. Last time I called they said Dr. Grubb was only coming in once a week or so, I don't know if that's changed since or not. I hope he's not tiring himself out too much. Patti

Thanks everyone for your replies. Now I just have to check to see whether it's covered by ins. to go there or not! We're seeing a new cardiologist next month, I'll try getting a referral from her. Lots of good information though, thanks. I'll let you know what happens. Patti

Chrissy's not complained of blurred vision--at least that I can recall--but, definitely dry eyes. (People with large eyes are said to have drier eyes) In fact, her opthomologist just checked her a couple of weeks ago b/c her eyes were burning and there was pressure behind her eyes. (Partially due to allergies, we think) He said she only has about 15-25% of the amount of tear that she should and for one month gave her special eye drops and told her to take Flax seed oil supplements. They both seem to be helping. He also said if they don't help he'll place silicone plugs in the tear ducts which will block the outflow of tearing and keeps the tears in the eye for a longer period of time. My girlfriend had this done (not a POTS patient) and had terrific results. Patti

Hi everyone, I've noticed these posts, recently one from Jenn202. Exactly how do you 'get into Mayo". As I've mentioned before, Chrissy has been having some difficulties lately and Dr. Grubb hasn't gotten back to her reg. Dr. in a couple of weeks. (I've tried calling also). We've seen Dr. Chelimsky (Cleveland) b/f we saw Grubb and even as a follow up appt. for him it'll take 6-9 months. Is Mayo just for additional testing? Is Dr. Low (Mayo Dr., I believe) good about cooresponding with your primary back home?Chrissy's already had two TTT (one at University and one at Cleveland Clinic). Do you have to have a certain degree of the illness to be looked at by a Mayo Dr.? Chrissy can function fairly well on some days, not so on others. I'd love your opinions on this. Thanks, Patti

I am writing under my mom's name - she's better at checking the discussion boards more often than I am. I have to make a name for myself on here! But I have very bad nausea that comes and goes. Try buying those bracelets for carsickness at AAA. They just push down on pressure points on your wrists - usually helps a lot. Cost about $8 or so. Otherwise, saltine crackers seem to help a LOT (especially late at night because they're not heavy). Sad, I know, that these are the things that work ... after all the medicines we try to end the nausea -- and it all comes down to some Zesta crackers and 'wrist accessories' I wonder too why we have the nausea also. Who knows - another POTS mystery! Hope This Helps~ Chrissy

Wow!! You guys are great--such wonderful ideas. Cnm1-how lucky you are to live so close to such a great college! We live not too far from Lake Erie College (we're in the Chardon area), but of course Chrissy didn't want to go there. We're lucky also that we have relatives about 10 minutes from JCU--so should an emergency arise, they could get there a little sooner than us. We'll definetely have to try out Pizzazz--wonder if it's owned by the same people that have a Pizzazz on Rt. 91 in Mayfield? That one's great! Thanks again everyone for all your ideas, we'll keep you updated!! Patti

What an interesting article. I've never heard of this before and don't remember Dr. Grubb mentioning it either (although I don't remember much these days). Morgan, you mention the possibility of the damage being done in utero. I have oftened wondered the same. Chrissy is a twin, her brother is 'normal'--no problems whatsoever. They were 10 weeks premature, yet every Dr. we've brought this up to doesn't think it has anything to do with anything. I find it hard to believe, although Chrissy didn't get POTS until after an outbreak of bronchitis at 15 1/2 we often wonder if there were underlying POTS episodes that we just didn't pick up on at an earlier age. Patti

Thank you all for your replies. They are all very helpful. We were wondering whether a laptop or desktop computer would be more beneficial, good idea about a recliner and laptop--I didn't think of it before. Hopefully John Carroll University will be as accomodating as OU was for you Steph. It should be an interesting journey for Chrissy and I!!! Patti

Hi Steph, How brave of you to keep up your studies at a large school such as OU!! I agree with you 100% about Chrissy letting her prof's know about her condition, for the most part they've been absolutely wonderful. What she did the past couple of years is just to type out a page about POTS, briefly what happens to her body under certain conditions and what they should be aware of. MOST have been very supportive. Did you dorm with someone or did you have a single. If you did have a roommate, how did you deal with needing quiet, needing the room colder than normal, etc. I'm very surprised OU was so accommodating-being such a large school I would've thought you'd just be another number to them. That's one of the reasons Chrissy choose a smaller school. That, and the distance. I think it will be very reassurring to her and her father and I that she's so close should a medical problem arise. How did you cope when you didn't feel well? Thanks so much for your input. Patti

Hi Steph, Chrissy has always thought she was crazy when not being able to sense when to eat. The Dr.'s seem stumped. I don't know if she's ever mentioned this to Dr. Grubb or not. It's so difficult to get her to eat sometimes. For some reason, late at night when the nausea seems to come full force she always has to have something salty and spicey. Like nacho chips and salsa! Go figure! She's a normal weight for her height, but she says she really doesn't ever feel hungry. She has always had a difficult time with drinking too. HATES water--says she feels like gagging when she drinks it. Is sick of pop, but sometimes the carbonation helps. Gatorade, powerade and juices--she tries to alternate between them, but she never really wants them. She's lactose intolerant so milk is out of the question. Have you always felt that way about eating, or did it just start with POTS? Patti

Lynna, I'm so sorry to hear about your son. It is very frustrating for us as parents to watch this happen to our children and for us to feel so helpless that we can't 'make it all better'. Hopefully you will find some answers in Dallas. Does he have any brothers or sisters near his age? My boys were a tremendous help when Chrissy was at her worst. Even just telling her the silly things that went on in the lunchroom--anything to make her laugh. My daughter was diagnosed with POTS 3 1/2 yrs. ago. I was a terrible time until we found the appropriate meds/Drs. She was unable to walk unassisted at the time and I literally went into the shower with her for her to take a shower. We also had to put a make -shift bedroom for her on our main level--it was much too difficult for her to walk up the stairs, even with help. She also missed her entire sophomore year of high school and was home tutored. She still has her bad days but, she is now finishing her associates degree (she's 19), drives and has a part-time job. Lots of prayers to you. If you need to talk, e-mail me please. We all know what you're going through. Patti

Hi, Chrissy has decided (she thinks) that she wants to stay in a dorm this fall. The college she's going to is about 40 minutes away (in good weather) and everyone knows since mornings are tough, she thought she'd have somewhat of a head start by not having to drive everyday. We've requested through the disabilities office of the college for a single room with A/C and as close to the campus as possible. Oh, and elevator access hoping that she's not on the first floor. Is there anything else we should do? Anything else we should request? Chrissy will have finished her associates degree by the end of summer from our community college so she's a little familiar with college life. The college she will be attending has about 4,500 students (to give you an idea of the campus size). It's a private catholic college, if that should matter with how things are run, I don't know. The school has suggested that we/she go to the first available orientation to get the class times that would accommodate her best. We else do you suggest? Thanks everyone. Patti

Hi everyone, Chrissy had her skin allergy testing today. They pricked her about 36 times in the forearms and the only thing they found was that she 'might' have some allergy to dust mites (Great!} and trees! They do a round of needle injections, wait ten minutes to see if there's a reaction, then go to stronger injections, wait again, then stronger yet. The 3rd and 4th time the injection site got red but the size didn't get big enough to consitute a 'real' allergy. Nonetheless, I went out and purchased all hypo-allergen pillows, mattress cover, pillow covers, and basically scrubbed her room down! It'll be interesting whether or not any of this helps her. It would make sense that her eyes are burning if there's dust mites you would think. Anyway, I figured it can't hurt! Thought I'd let you all know. It'll be interesting to see what the ENT Dr. has up his sleeve next since he doesn't think she's been having sinus infections all these times. Patti

Hi, My 19 yr. old daughter has had POTS for 3 1/2 years now, and her number one complaint has always been the nausea. It does comes and goes with severity, but I don't think it is ever completely gone. She has purchased those elastic wrist bands from our AAA store that seem to help her. (They're the ones for sea sickness, with a pressure point on them). The AAA lady says a lot of people purchase them when they're on chemo and they seem to help them also. Sometimes saltines help her, sometimes they don't. She should definetely drink more fluids than she does--I don't know if it would help the nausea, but it can't hurt with the POTS. She also never really has an appetite. I don't know if that's related to the nausea or not. But I have to remind her to eat (wish that was my problem!). All the Dr.'s are stumped about the nausea--"It's gotta be the POTS" is what they all say. If you find any remedies--PLEASE share them with us. Patti

Thanks for the advice on the Claritin. I have to look thru Chrissy's records to see if she was ever on it and then ask her Dr. about it on Mon. I'll let you know how the testing goes when we get back. Patti

Thanks everyone, I made an appt. with Dr. Dorostkar at University Hospitals, it's not until the end of June--but better than nothing! We'll see what she has to say, I'll keep you posted on what happens the next couple of weeks with Chrissy. Patti

Hi, My daughter Chrissy is taking .1 mg 2x daily, although she feels that this doseage needs to be tweaked a bit higher. It has really helped her these last couple of years. Patti

Chrissy and I just returned back from the ENT Dr. and he doesn't think there's any need to remove the 'larger than life' polyp that Chrissy has. Finally some good news! In fact, he doesn't think she's been having sinus infections at all. He believes that most of her problems stem from allergies. (nausea, burning and pressure in her eyes, weakness, fatigue). Of course, some of these symptoms are also from POTS, but maybe some of it can be brought on by allergies. She has had a blood test for allergies before, but Monday they are going to do a skin test, which he says is much more sensitive. I'm hoping that once all the antibiotics get out of her system her nausea will go away. Are allergies common for POTS sufferers, or is this just an 'extra'? Thanks, Patti

Thanks to both of you, Morgan, I can't say why I want her to see an electrophysiologist. I guess we're just a little bit desperate right now and are willing to see anyone who might have a clue about POTS. Her pediatrician is wonderful (she's 19), but unfortunately clueless about POTS, but he's willing to help in any way. I just remember someone saying on a prior post about this type of Dr. and thought maybe it's something we should try? Do you know of a particular Dr. at the Cleveland Clinic? unfortunately our insurance won't cover our going there anymore, but if it'll help, we'll try. Thank you so much. Louise, We saw Dr. Dorostkar right when we were discovering what was wrong with Chrissy--at the time she told us to pick between Dr. Grubb and her b/c she felt it would be too confusing going to both Dr.'s and possibleygetting different info. We really liked her though. I didn't know she was an electrophysiologist. Do you feel she's helped your daughter equally as much as Grubb? How old is she (your daughter)? Thank you very much for recommending her? Patti