seaboardbc

I used to love amusement park rides. In fact, I would wait in line for the first car on the roller coaster. Now, elevators and escalators can "do me in". When I saw your post, I felt sick. Sorry for the dramatics, but I think that I have indirectly answered your question. \Bren

I have POTS and Raynauds. I have told my rheumatologist that it's like my body doesn't know what the temp is outside, it just does what ever it wants. In fact, I live in Minneapolis and we are having a really hot summer and I'm seeing the rheumatologist this week because my Raynauds has been so bad the last month or so. Bren

I was born in Cleveland and grew up in Columbus. I moved away from Columbus in 1980 (same thing goes for my siblings). Both of my parents are Ohio natives (my dad is from Cleveland, my mom's from Zanesville). Do you know where does that leave us? Bren PS Both of my parents have health issues. My dad has so many, I tell people that he must really be a cat because he has surely had 9 lives in this life time.

How about card making using stamps? My friend got me into this when I first got sick. I was never a crafty person and I thought the stamping thing was so dumb. Guess what...I really got into it. I think because when I do it all I think about is what I'm making. If you want to find out more you can go to www.stampinup.com. I know that you can buy stamps locally, too. Bren

My symptoms were so bad when I got my period that I usually ended up in the ER during that time. Now I am on birth control pills 365 days a year, so I never have a period. It's not a cure for POTS, but it's made my ER trips less frequent. Bren

I purchased this article and I can e-mail it to anyone who would like a copy (I'm not trying to infringe on copyrights, I'm just sharing my copy with those who need to read it). I'm being tested for mastocytosis right now. Bren

Hi I have the same problem with my heart rate. I'm on several meds, but the beta blocker that I take is Pindolol 5mg twice a day. It helps a bit, but very seldom is my heart rate "normal". I'm also take birth control pills 365 days a year because when I would get my period my heart rate was through the roof. This at least helps with the really high spikes. I hope that this info is helpful. Bren

I really appreciate all of the replies. I do a ton of things and I'm sure to the rest of the world I look like I'm doing very well. When I was first diagnosed I went back to school and I'm working (slowly) on getting a PhD. I hope to get it and be well enough to do medical research on this crazy illness. Then I won't feel that all I've gone through has been in vain. I'm feeling better (emotiionally) than I was a few days ago. The best way to describe how I was feeling (and how I feel sometimes) is to equate it to how I felt after 9-11. I was in NYC on 9-11 very close to the world trade center. For awhile after that I felt like I was only "existing", it was very difficult for me to think about a future because after having our world as we knew it pulled out from under us, I was so gun shy waiting for it to happen again. I went for counseling after that and although I can see it every time I close my eyes, I'm in charge of my emotions instead of my emotions being in charge of me. So that is sort of how POTS has been for me, each time I'm feeling sort of comfortable with it, the "rug gets pulled out from underneath me" again with some new symptom or ailment. So when I dream about my future I start to wonder if I will have one (although I desparately want to live to be a ripe old age). Stacey, I like the idea of changing your perspective (your husband sounds great). Today I got up and said to myself, what guarantees does anyone have in life? I feel better because I feel a little more "normal" now. I just hate when I start to look at myself as being unhealthy, because that is so not my attitude. So as your husband calls it, I changed my perspective...I got up early, got dressed nice, and was out of the house by 10 am doing errands. So what if I was on my way back home by 11:30 am and on the couch the rest of the day...for a few hours I was just like everyone else and I was happy for that.... Thanks everyone Bren

I was diagnosed with POTS 3 years ago. For those of you who know me, I have managed to keep a jovial (well maybe that's a little strong), okay positive and upbeat attitude through it all. Oh sure, I have bad days, but I'm always able to pick myself up and get going again. But now I'm at my wits end. I'm functioning, but I feel like a robot going through the motions. What do you guys do when you've had about all you can take? I'm looking for "non-medicinal" suggestions. Although I am a fan of counseling, I don't really want to go to someone and talk about my medical problems, I spend enough time dealing with my health issues as it is....and Steph if you read this don't worry about me, I'll get through this I promise and I'll be my humorous self again (I would just prefer that it's sooner than later because right now I can't even stand being with me, but I have no choice, so I can only imagine how everyone else feels). Thanks Bren

I was wondering if anyone here has a confirmed diagnosis of mastocytosis. I have read a lot about it on-line and I would just like to know more about it from someone who actually has it. I was diagnosed with POTS almost 3 years ago. Then in February I found out that I have severe osteoporosis (I'm 44yrs and I haven't gone through menopause and the doctors don't think that it's drug induced). Shortly after that I was "unofficially" diagnosed with Meniere's disease after experiencing several episdoes of vertigo. Now I'm undergoing a series of tests to figure out what's causing my osteoporosis. My doctors suspect mastocystosis. Any firsthand input would be greatly appreciated. Thanks! Brenda

I jsut ran across this article and I thought it might be helpful to some... Mayo Clinic to Offer Discounts to Uninsured Patients

You're in my thoughts. Hang in there you have all of us and that's a lot of support! Bren

Julie I am so sorry for you. I know how difficult it is to feel awful every day and then have to fight for the rights that you deserve. Please know that I'm sending you the strength to fight and to get your name cleared. As for the Doc, he should lose his license!!!! Bren

Thank you everyone for all of your replies. Morgan, I have had a few different tests so I'll call my ENT and find out which ones and ask him to do the one you mentioned, if he hasn't done it yet. I would just like to figure out what is causing it so that it can hopefully be treated. I would like to describe what happens to me and see if it sounds like what happens to you. First of all, it hits me like a truck. I feel like I just got off a boat ride from **** and literally I can't tell which end is up. I will lower myself to the ground because I'm afraid that if I don't I'll fall over because I can't even tell if my feet are on the floor. Changing positions doesn't help at all, it just makes me feel safer if I am laying down. I lie on the floor because I'm afraid that I will fall out of bed. Closing my eyes doesn't make a noticeable difference in how I feel. When I was in the ER I couldn't follow the light that the ER doc was shining at me. Does this sound like one of your episodes? Thanks Bren PS I don't take Florinef

Morgan No, actually I mentioned it briefly in a reply to my own post. So it's not you. Bren

Morgan, I decided to start a new thread for Meniere's. I think that I might have had a Baer test. My ENT said in order to give a definitive diagnosis of Meniere's I need to have 3 hearing tests that are different from each other in either direction. He said that I did exhibit all of the classical signs of it down to how I described what happen to me (I had never even heard of it). I have hearing loss in my left ear. I also have horrible shrill ringing in my left ear. He gave me 3 different meds to keep with me me in case it happens again. The episode that sent me to the ER lasted about 5 days. I've had minor episodes since but nothing that would hold a candle to that one. Is there any connection between POTS and Meniere's? It's ridiculus, how many differnet things can be wrong with one person?!!! So if anyone out there has info on Meniere's, I would love to hear about it. Thanks Bren

I had a regular bone density test. My spine was -3.0 and my hips was -2.3. I am undergoing additional tests. I have an appointment with my rheumatologist and also a nephralogist (sp?). Does anyone know the dosage and length of time you need to be on prednisone to link it to osteoporosis? Bren

Hi Steph Thanks for your reply. I never took Florinef. I was searching a lot last night and I found a connection between osteoporosis and familial dysautonomia but I think that if you have that, the symptoms manifest themselves at birth (although it is a Jewish genetic disease). I was supposed to see Dr. Grubb in November, but my appointment was cancelled because of his health. I have tried to reschedule it and Shari tells me it's better to stay on the reschedule list (I'll get in sooner). My doctors here are treating me, but it's the same old thing and now I have lots of new symptoms. I was in the emergency room a few weeks ago because I had vertigo so bad I couldn't tell which end was up. They think that I might have Meneire's disease. On top of everything else, the insurance company is questioning my disability. Right now, I'm hanging on to the end of my rope by my teeth and I'm trying soooooo hard to remain positive.... Bren PS At least I forwarded stupid e-mails to you now and then

Bones are always aching somewhee in my body, though more often in my back, neck and arms. You might want to read my post about osteoporosis. Bren

I'm back in school very part time and I haven't had any problems with my math classes (and I've taken some advanced classes). But I do think that my math classes caused some problems with my POTS. One of my major syptoms is angina and when I was taking math classes I often experienced angina during the class. This didn't happen so often when I took other classes. I told my cardiologist about it (I thought maybe it had something to do with the room temperature). He told me that their was a study done and working math problems caused angina in people with heart conditions!!! Go figure, I love math and it's easy for me, yet I missed more math classes than any other subject. Bren

I haven't posted for awhile. I wasn't blowing you guys off. I just wasn't feeling too well and it was hard for me to be my upbeat self. But here I am, with a question for anyone who might have some answers... I was diagnosed with POTS 2 1/2 years ago at age 41. Yesterday I fould out that I also have osteoporosis. My t-score was a -3.0. I guess this is pretty unheard of in someone my age. So now my doctors are doing more tests to see if there's another underlying cause of the osteoporosis. I have taken prednisone off and on the past couple of years for the POTS, but more off than on and at relatively low doses. I know that prednisone can cause osteoporosis, but does anyone know if there's a connection between POTS and osteoporosis? Thanks Bren

I love the idea of "Shamas Night"! Here's a link to a fun, little Chanukah ditty (for lack of a better word). Be sure to have your audio on while watching it. (Please cut and paste the link and enjoy!) http://home.nc.rr.com/keehyun/stuff/jew-heyya.html Happy Chanukah! Bren Hey Steph, I am around and thinking of you!

The police investigation into the disappearance of Jim Cockman is continuing with the announcement by the Greenville County Sheriff's Office of a $50,000 reward for information about two "persons of interest" being sought. The individuals are described as a white male, about six feet tall, with shoulder-length brown hair, tattooed legs, and a full beard; and a white female, about 5'7", petite, with reddish brown hair in a ponytail. The two were last seen in an older model white sedan containing two children at about 6pm on Monday evening, Sept. 13th. A special tip line is available at 1-866-839-6241 for those who believe they have information about these individuals.

Businessman's Disappearance Now Considered Possible Abduction $50,000 Reward Now Offered For Information GOWENSVILLE, S.C. -- Investigators are releasing new information about the disappearance of a retired Greenville County businessman, an incident detective are now calling a possible abduction. James David Cockman, 71, was reported missing Tuesday afternoon after he went to meet a person about selling a silver 1996 Chevy Suburban. The incident report states that after a phone call, Cockman met with someone at the vehicle, parking in a vacant lot at the interchange of Highway 11 and Highway 14, shortly after 6 p.m. Monday. The man gave Cockman a $100 down payment, and arranged to meet him again at 10 a.m. Tuesday to pay a balance of $8,400 for the vehicle, according to the report. Cockman left his home at about 9:45 a.m. Tuesday for the meeting, and was seen purchasing a cup of coffee a short time later at a convenience store near where the Suburban was parked. Deputies were notified when Cockman failed to show up for another appointment later that day. Investigators released a description of the two people they believe Cockman was to meet, saying they would like to speak with these people about what they may have seen: The man was a white male, six feet tall, weighing 250 pounds, with shoulder-length brown hair, tattoos on both legs and a full beard. The woman was a white female, five feet, seven inches tall with a slender build, with reddish-brown hair in a ponytail. The two were seen in a white sedan with two or more children inside. Cockman was last seen wearing dark pants and a white polo shirt with H.L Hunley on it. The green 1999 Jaguar deputies believe Cockman drove to the meeting was found in a parking lot at Highway 11 and Highway 14, but the Suburban being sold was missing. The Suburban has South Carolina plates, number FM79075. At that crossroads, the sheriff's office is setting up a 24-hour command post and asking people to drop by with any information they may have on the disappearance. Anyone with information can call toll-free at (866) 839-6241. Cockman is a former chairman of the Greenville Chamber of Commerce, a former Sara Lee executive and co-owner of Brains On Fire in Greenville. Friends and family have put together a $50,000 reward for any information that leads to an arrest and conviction in this case. Deputies said that evidence found in and near Cockman's car indicates that he probably did not intend to leave the car behind, and as a result, they are beginning to suspect foul play in his disappearance. Investigators are reviewing videotape from a surveillance camera that overlooks the parking lost where Cockman's car was found. "We're hoping that (the tape) is going to be instrumental in helping us with this case," said Michael Hildebrand, of the Greenville County Sheriffs Office. Officials said Cockman had no known medical conditions that might account for his disappearance. Friends and business associates passed out fliers in Gowensville Wednesday afternoon, hoping someone who regularly drives through the area may have seen something. "Nobody has contacted the sheriff's office or members of his family to make any kinds of demands," Hildebrand said. If anyone has any information, call the Greenville County Sheriff's Office at (864) 467-5157.

Thank you so much