LindaJoy

Hi. Just wanted to share the phone message I got the other day from a doctor at the hospital where I was treated so terribly a few weeks ago by one of the ER doctors who said I had stress and not POTS. I had sent the hospital a whole packet of information on POTS. Friday, May 13th, 3:37 p.m. Telephone Message Yes, hi. Good afternoon. My name is Dr. Tucker. I?m the medical director of the emergency department at St. Rita?s Medical Center and this is a message for Ms. Linda Parsons. Ms. Parsons, I just wanted to take a moment to thank you for sending that information to the hospital. It?s a lot of information. I have not gone through it all but I did read one of the articles and I wanted to thank you. Very interesting?We do know about this syndrome but I generally think about it as only causing an actual syncopol event. And so this information you sent will make me a better doctor and I will pass this information on to my partners in the emergency department. But, I just wanted to thank you for taking the time and effort you did to get this information to us. This is a very intelligent approach and I admire what you did. So, I just wanted to take a minute to thank you. If you see (?) any reason to call me, please fee free to. My office number is ____. And, once again, thank you. Wow. I tell you what, that message put a smile on my face! I'm so hoping they begin to take POTS more seriously around here. I got a letter from one of my old doctors who I sent information to, too, and he thanked me for the info and said he would use it in his practice to better help future patients. I'm sooooo glad. I am really fighting feelings of worthlessness right now since I've quit my job and can't really work or do much of anything. Now, I feel like I've done something to help people, and it's a good feeling. Hope you're all having a great day. LindaJoy

Hi, Ariella, I'm not sure what' causing my stuffy ears right now, if it's the POTS, the Florinef that I just started, or the coming off of my Zoloft. I think it's the Zoloft, in my case, because I didn't have it before I started to wean off of it and read that that is a symptom of Zoloft withdrawal. I wouldn't be surprised, though, if other POTS patients have this feeling due to their POTS since there's not enough blood going to the head most of the time, which leaves us feeling foggy and the eyes distort, so it only makes sense that it would affect the ears, as well. Hope others can help more. Linda

Last night, I had a migraine so bad that I wanted to cut my head off, no kidding. I think, between the new Florinef, coming off of Zoloft and being on my period, my head is not coping well. I will have my husband pick up magnesium today and start taking it. Thanks for the advice, Karyn, and thank you, everyone, for your responses. Linda

Hi. Just wondering if anyone experiences migraines that start late in the day, last until you fall asleep, that are accompanied by dizziness and a feeling of fullness in your ears? Thanks, Linda

Hi. I've been on Florinef for a few weeks now, and I was feeling really good at the beginning. Then, I crashed due to overdoing it. Anyway, for the past four days, I've had a headache that begins in the afternoon and lasts until I fall asleep at night. Along with it, I have dizziness and I feel like my ears are full. Has anyone else experienced these symptoms on the Florinef? Thanks. Linda

JLB, I'm glad you asked the question because I learned a lot from this, too! Runnergirl, thank you for the clarification. It's hard, while in the midst of heart irregularities, to not worry about them, but while my heart is calm, I don't want to worry about the "what if's." Thank you for taking the time to calm my nerves! I agree with JLB: this forum has been the best thing to come into my life in a very long time! LindaJoy

Persephone, I am glad you went and had a great time. I don't know that I would have had the courage to, especially after all of the blood pressure problems you experienced, but you did and it's something you'll always remember. You're right, life is short, and so much of our lives are given to this awful condition. It's awesome when sometimes you can just spit in its eye and do what you want anyway. Yes, you'll pay for it later, but what a freeing feeling while it's going on! You deserved to celebrate, and I'm so glad you did. Keep us posted on your bp progress. Oh, yes, I've had the heavy, hard beats without them being fast. It's like my vasovagal is kicking in or something, trying to keep me under control, or maybe it's my heart medicine keeping the tach at bay but the hard beats still come. It passes soon, though. Thanks for sharing your news. You sound so much more upbeat. Good for you!! LindaJoy

Kathy, I've never heard of this, but it sounds like it may be something that's worthwhile. Yes, please keep us posted as to how you respond to your cream medication. It may be worth looking into for all of us, then, too! I hope it works for you. How wonderful that would be!!! LindaJoy

I'm confused. I don't mean to come across as ignorant about POTS, but I thought that irregular heartbeat was one of the common symptoms of POTS. Doesn't everyone experience off heart rhythms who has POTS? Mine goes flippy all the time. I used to worry, but then I read that irregular heartbeat was one of the common symptoms that every POTS patient seemed to suffer with, so I quit worrying. I even read that a lot of POTS patients throw PVC's that are harmless, so I quit worrying. Should I think about it more now? Should I worry a bit when my heart goes a little wacky? Does every POTS patient have this symptom? Dysrhythmia is a slow heart beat. How slow is considered slow or abnormal? Mine has been in the 50's a great deal since I started the Florinef. Is this something I should be concerned about? Linda

Oh, my, this one's even harder than the favorite movie question. I love so many kinds of music. While going through my divorce, my theme song was the Eagles' "Get Over It." I love "What a Beautiful World" and "California Dreamin.'" I also like "Total Eclipse of the Heart." I like Josh Groban very much, especially his versions of Oh, Holy Night and "You Lift Me Up." I like The Trans Siberian Orchestra's CD, "The Christmas Attic." Has anyone heard it? I play it now all of the time! Linda

Linda, I am soooo sorry you are feeling so poorly! Here's a get well hug for you! I'm worried that you may be dehydrated, especially with not being able to keep down anything with the vomiting, and on top of that, not wanting to drink fluids because of the throat pain. It may be best for you to be on IV. I know it's a pain, but I think it may be the best thing for you right now. Keep us posted, and don't wait too long to get additional help with your condition! Pneumonia is nothing to mess with!! About the sweat test. The way the Cleveland Clinic did mine was, they put these electrodes on four places on my left leg: my foot, two on my lower leg and one on my thigh (?) I'm not sure about that fourth one. Anyway, they then ran current through them--it stung a bit--and my leg began to sweat. The patches on my leg monitored the amount of sweat and sent a reading to a computer to evaluate. Apparently, under such conditionns, you should sweat so much, and that amount will then be analyzed by the equipment. Some people are covered in powder and put in a box to sweat. You should turn purple where you're sweating, then this is evaluated. I think I would rather be stung than put in a box!! Good luck tomorrow, Linda. And, please take care of yourself. With your POTS, you cannot get dehydrated. That will make you feel so much worse. Please let us know how you're doing. LindaJoy

Hey, Roselover, which dancer in A Chorus Line was your schoolmate? I haven't seen Dirty Rotten Scoundrels, but has anyone seen that movie with Diane Keaton and Jack Nicholson: Something's Gotta Give? I love that movie. I haven't laughed at a movie like I did at that in a long time. We borrowed in from my husband's nephew a long time ago and haven't returned it yet. I've watched it twice and want to watch it again before we return it! Linda

Oh, as if my list wasn't long enough, I thought of a couple more movies I love: Disney movies, especially The Little Mermaid (the music is great) and Beauty and the Beast. A Chorus Line (the movie, not the Broadway rendition). I think that's it of my favorites. Enough, huh? You can see what I do with my time. Linda

Stacey, I am sooo sorry you're having such a rough time right now. I know where you are. It took me over 10 years of specialists and tests to find my POTS doctor and get my POTS diagnosis. Now, I'm on another quest for a family doctor who knows about POTS and will talk to me about it!! Hang in there. I know it's hard. I've been down with this latest bout since the end of February, and it gets more frustrating each time I can't do something that I want so badly to do. I just want to give up. But, I know I can't, and you won't, either. You're strong and have support, here and at home. Know we're here to listen and support. Take care and hang in there, Stacey. Linda

Thanks, Dancing Light, for the link. I wasn't sure if it was the milk and whey powder that set me off the last time, but today, I had sour cream--quite a bit of it--and some cheese, and I had some problems tonight, along the same lines as the night I had to go to the ER. This time, I figured, because of everyone's help here, that it was just the dairy intolerance and didn't worry. This, too, will pass in a few hours, hopefully!! I am feeling better--had the dairy around 3:30 this afternoon and am starting to feel a bit better now. Guess I will know to stay clear away from dairy some day, huh! Thanks, again, everyone. Linda

This is a HARD question! I LOVE movies. My dad used to watch movies all of the time, and he kept a little black book full of the movie titles he'd seen, along with his own rating system, in stars, and in words--uh, he liked movies in which women showed a lot of cleavage. As I got older, I used to watch movies with him. Anyway, I'm a movie addict, so my list is long--and probably a little strange. Gone With the Wind--I love Scarlet O'Hara. She's such a brat but so strong. Jurassic Park--It seems so real and the special effects are awesome. Predator--With Arnold Schwartzeneger--great special effects. I love nearly all musicals, especially The Sound of Music and Oklahoma! It's a Wonderful Life Miracle on 34th Street White Christmas A Charlie Brown Christmas (I love the scene when Linus recites from Luke) Blade (with Wes. Snipes) The Lost Boys (Keifer Sutherland is so hot!) Far and Away--Nicole Kidman and Tom Cruise Miss Congeniality--with Sandra Bullock (I don't know why, but I love this movie) Finding Nemo Jeepers Creepers 2 (so scary and great effects) Creature from the Black Lagoon Glory--with Matthew Broderick--no matter how many times I watch it, I cry The Scream series--Parts I, II and III The Nutty Professor--with Eddie Murphy The Sixth Sense--the writing is excellent! Shrek--the first one Jaws--the first one Now, you all know how strange I am. My taste in movies is very diverse. Linda

Thanks all for your support and caring words. I'm still not up to where I was before my overdoing it day, but I'm better. You are all so very important to me. Linda

Oh, Jesse, please don't compare me to a great man like Moses!!! I'm just a tired, irate POTS patient who is fed up with doctors telling me I'm crazy and not helping me!! Moses listened to God, I listened to my aching head! Anyway, I'm sooo glad you're calling that doctor to let him know what's going on. You will be helping so many patients who come after you, who need a proper diagnosis and help. Maybe if each of us tells at least one doctor about POTS, we'll soon have all of the earth's doctors covered!! Take care. Linda

Hi, Roselover, I too have fibromyalgia and have been on Zoloft for over 7 years. My new family doctor is now weaning me off of the Zoloft because she doesn't think I need it as my old family doctor is the one to put me on Zoloft for panic disorder, of which I don't have. I'm not sure if SSRI's do any good for fibromyalgia. I too have heard that some doctors will prescribe them for fibro, but personally, I'm not sure they do any good, nor have I heard any fibro patients praising them. I'm sorry, this hasn't been much help. What I"ve noticed with the Zoloft is that it gives me anxiety symptoms, which in turn, probably make my muscles tense which gives me more pain, so for me, it may be a good thing to not be on it. Hopefully, you find the answers you need to help you get along better! LInda

Ernie, I will never, ever complain again that two of us in my family have POTS!!! Well, at least you should have a lot of understanding relatives! Linda

Hi, Janine, My doctor is taking me down on my Zoloft dosage because I'm on 100mg a day, and it's actually been giving me anxiety. She doesn't think I need it at all. I do, but in a lower dose. The doctor who originally prescribed my Zoloft prescribed it for panic disorder, of which I don't have. She didn't, and still doesn't, know anything about POTS. Anyway, I do want to try a lower dosage, like maybe 25 or 12.5, as I've read that SSRI's, in lower dosages, are very helpful, but my family doctor now is new, and I haven't really had much luck with her listening to me. I've been on 50 mg. for a few days now, and I'm still getting anxiety symptoms from it. That's why I think I should go down on the dosage, but I'm not sure how far down yet. I do know the 100 is way too much. I can't sleep when I'm on that much, and it gives me restless leg syndrome badly. Linda

To all of you mothers out there: One day, as God was walking in His garden, he came upon an idea; yes, a very wonderful idea. Soon, He was hard at work, gathering all of the finest qualities He had created. Together, he mixed cupfuls of love, compassion, forgiveness, protectiveness and honor, added dashes of beauty and respect, whole scoops of strength and joy, then a few tablespoons of fun and life. God then created man, but His mixture didn't seem fitting to bestow upon this creature, so He waited. Not long after, God created a second creature: woman. "Yes," God said, "she is what I've been waiting for." Then, God blessed woman with his glorious mixture, bestowing on her the greatest qualities He could offer. Soon, this woman, God's most endeared creation, became what God had envisioned when he first began to mix: a MOTHER. Happy Mother's Day, everyone. You are God's greatest gift to the generation's. Linda

It just keeps getting better. About a month ago, my brother passed out at his workplace. He was experiencing high blood pressure along with the passing out. He's had problems for years, just like me. He's had numerous diagnosis, but continued to experience problems. He just got back from his cardiologist, one I'm going to look into getting, who knows all about POTS and said that is what my brother has. He's doing a tilt table Tuesday to confirm, but he's sure that's what's wrong with Terry. I told Terry weeks ago that I thought he had POTS. He didn't want to hear it. He said that after seeing what I've gone through all these years, he didn't want to have what I do. I think he's mad at me, like I wished this condition on him. Anyway, my father was adopted, so we don't know if POTS came from his family or not. It didn't come from my mom's side. My other two siblings have no POTS symptoms. Just us lucky two. Does anyone else here have siblings with POTS? I've read about parents and children having it, but any siblings? I worry that my two kids are going to end up with full blown POTS. They both exhibit symptoms. Is it really that hereditary? Does anyone know? Thanks. Linda

Hi, Sue, Yes, I've had episodes when my mind is actually blank. I never believed that a mind could actually go blank, but mine has, especially with this latest POTS episode. I can't remember what I was doing or even names of close family members. I guess this is a symptom of POTS that's talked about at http://home.att.net/~potsweb/POTS.html. It says, "A poor memory is a major symptom of POTS, and many patients will have a difficult time just remembering their own symptoms while conversing with doctors." Cognitive impairment is one of the symptoms Dr. Grubb lists, with difficulties with concentration, brain fog, memory and / or word recall as explanation. I would suspect that loss of reality for a moment could fall under that, as well, or loss of where one is at. I guess this only makes sense if a large percentage of blood is in one's legs instead of the brain, where it needs to be for us to be able to think. Does this make sense? Linda

Hi, Kathy, My POTS episode this time actually came on after a flu virus. I was put on an antibiotic for bronchitis (which I didn't have), and that med set me into an irregular heartbeat that led to tachycardia and hospitalization. I don't do well on antibiotics, either. Hope you get straightened out! Take care. Linda