LindaJoy

Thank you both for your replies. Kayla, it's so nice to talk with you. I'm so sorry you are so young to have to deal with something like POTS, but you are very brave, too. Angelloz, I don't think any of us truly understand what others go through, ever, until we have to deal with what they do. And, even then, it's not the exact same thing, but we can come pretty close, at least, to empathize. It's great we have these kinds of groups to help us. My mom once told me that the one good thing my illness has done for me is brought people into my life I normally probably wouldn't have met. I think it's helped me, too, to become more supportive of those with illness, a greater understanding of their pain and struggle and a respect for what they go through. Like I said, people who deal with chronic illness every day and keep trying every day to make a life for themselves and their families, are heroes to me. You all take care. Lindajoy

Hi, everyone. Firstly, Happy Memorial Day, the day of the year we celebrate and remember all of those who have worked so hard to keep us safe and free. Their sacrifices and dedication should never be forgotten or taken for granted. Now, what I want to say to each of you is, yes, we have military heroes that we celebrate each Memorial Day. Many of you may be related to one. If so, you must be so proud and please, thank them for us. But, I want to tell you, too, that during the course of chronic illness, I've come to firmly believe that the real heroes in life, besides those who give their lives for us, are those with chronic illness, those who, every day, no matter the odds, no matter the pain, no matter the hopelessness for a cure, get out of bed and try again. I don't believe someone should be a hero simply because he or she is an actor or a professional athlete. I do believe those of you who live in spite of pain, work in spite of great illness, socialize in spite of great distress, love in spite of emotional and physical limitations, are the real heroes. I was reading the thread here on how we all feel in the mornings, and my friends, what you all go through each morning, each day, each evening, each night, and continue on, accepting your plight and trying to make the best of it, makes me proud to know you and makes me say that I know real heroes. What's that saying? Courage does not roar. It is that still, soft voice that whispers, "I'll try again tomorrow." That's all of you, and I'm so very proud to know all of you. Thinking of you on the Memorial Day. Lindajoy

This is terrible, since I was an English Literature major in college, but I can't remember most book titles that I read. Isn't that awful! But, I have a lot of authors whose books I usually enjoy. Barbara Delinsky (my favorite, The Summer I Dared) Linda Howard Iris Johansen Lisa Jackson Janet Evanovich (Stephanie Plum series) Books about Amish ways of life (can by about Amish families, relationships, mysteries, etc. Very good without being smutty) Dean Koontz (Odd Thomas, my favorite) I love children's books: Are You My Mother? Owl Moon Love You Forever Green Eggs and Ham

I'm with you all with this. I was here one day and saw "Facebook" was on. I thought, "Oh, my gosh, is what I'm saying going to go on my Facebook timeline now?" which would not have been good because it was that discussion we all were having about our marriages. I'm a bit afraid now of what I do on the computer for fear it will show up on my Facebook page, like this discussion about my marriage here while "Facebook" was watching. Yeah, kind of creepy! Lindajoy

Hi, everyone. I've been here since 2005 and I've always had a "generic" icon. How can I get my picture uploaded to appear with my posts? I went to edit my profile and have tried to download a photo, but it keeps saying, "File is too large." Am I doing something wrong? Thanks, everyone. Lindajoy

Mornings are lousy. I feel tired, sick, headache-y, tachycardic, hurt all over (some mornings, like I've been hit by a truck), anxious, shaky, warm. As I get up and move around, I feel better, usually. Lindajoy

Welcome, Mark! Glad to meet you, sorry you have POTS. It's great you have a clear diagnosis and a doctor who is helping you. Blessings, that's for sure in the midst of this condition. I'm assuming you live in Columbus, Ohio? I live in Lima. My son lives in Columbus and my daughter works there. Anyway, just wanted to welcome you. Hope you continue to do well and feel better soon. Lindajoy

I've always wanted to do ballroom dancing. I've done mostly choreographed song / dance moves for my performance group. Too much now, that's for sure. I would love to be able to do the ballroom dancing. That is so awesome. I'm glad you're able to. Have fun. Thanks for sharing that. Lindajoy

I wrote on the other post about this, but please let Kayla and her family know her POTS friends are all thinking of her and wishing her well. Thank you. Lindajoy

Hi, Littleangel. Welcome to the group. Glad you found us, sorry you had to, though. Wow, six tarantulas. Sorry, stopped me for a moment. As far as meds and treatments go, I think we all have been evolving in that department because it can take quite awhile to find what works for you. Hang in there. One thing I think you'll find, as you read more here, is that finding a doctor who believes you is the first blessing, then to find one who will work with you to help you with this condition is another one. Many of us here have docs who may not know a lot about POTS, but who believe we are ill and who are willing to learn with us to try to help us. Sometimes, that's better than what we get with the "experts" on the subject. I hope your doctor continues to be an asset to you and your health and you two can come up with a treatment plan that gives you a great amount of relief. My daughter is a critical care nurse at a busy Columbus, Ohio hospital. I cannot imagine doing what you do and having to deal with POTS at the same time. I couldn't do it. I have all the respect in the world for you for even trying. I'm sorry it's such a struggle for you. Bless your heart for continuing to work at it. I'm sorry your friends aren't as close. I know that feeling. My family and friends have left me behind because I can't go out to eat, or shop, etc. anymore. They don't seem to realize that I can sit and play Scrabble or watch a movie with them. I'm sorry about your boyfriend, as well. We've all been talking here about our spouses and our relationships with them. It's hard when you have a chronic condition. Please hang in there. It's hard, but we're all here to talk with. I went through the grieving my old life, as well, I think for six years. I just kept saying, "I want to get back to my old life." And, that's what I worked for. It took a very long time to realize there was no old life to go back to, and moving forward with the changes was what I had to do. Again, it's hard, but it can be done. I'm sorry for your grieving. I know how painful this all is. All I can do is give you a virtual hug and let you know we're all here to help you as much as we can. Take care, and again, welcome. Lindajoy

Oh, and dancing? Forget it. And, I used to be a dancer. Was in a dance group, met my husband at a dance, danced once a week. Now, I'm lucky to shake it a bit to the radio. Last time I tried, I couldn't breathe for an hour! I repeat, ugh.. Lindajoy

Hi, all. Yes, I have trouble singing, as well, If I'm driving and trying to sing along with one of my CD's, I need to stop a lot since I get so dizzy, I may pass out behind the wheel. Not good. I can't sing and do any housework or anything else at the same time. I used to sing publicly, as well, for years, but can't anymore. I'm just not as good as I used to be. It's funny, Dana, that you have more problems with your chest voice? Mine is my head voice. I really start to swoon if I sing in my head voice, but I can go a lot longer in my chest. Can't say others want to hear it, though! Do all of you have trouble talking on the phone and walking or doing housework, too? I do. I can't talk on the phone and do any walking, dusting, anything else, or I don't have the breath for it. One by itself is fine, sit and talk on the phone or dust or walk, whatever, but not together. Ugh. Dysautonomia. So much fun. Lindajoy

Please keep us posted, Kaybers Mom. Bless her heart, she's been struggling with her GI stuff for a while now. I'm so sorry it got so bad for her. I understand. I've been there, and it's not fun. Could you let her know we're all supporting her here? Thank you. Lindajoy

Carrie. Welcome. I'm sorry to hear that you are struggling so, but I'm glad to meet you. While reading your post, I was reminded of me, several years ago. While going through a divorce, I developed many of the same symptoms you are describing. In fact, it was then that my endo at the time first mentioned "POTS" to me. I was in excellent shape physically, no health problems whatsoever, worked out all the time (which was probably the problem because, due to stress, I had become obsessed with exercise), ate like a horse, yet weighed little, sweat a great deal of the time as my body's metabolism would not slow down. It got so bad that, just starting across the room to maybe go to the restroom, my body would speed up as if I were out for a jog. I got all of the same responses from docs as you have: there's nothing wrong, you're in amazing shape; there's something wrong, we just don't know what; it's just anxiety because you're going through a stressful time. I knew something was wrong. I couldn't shut down! I hate to say it, but what finally helped was Zoloft. It slowed me down so I wasn't burning the midnight oil within myself all the time. Later, I had to add others meds, like an inhaled corticosteroid and antihistamines, for allergy problems that I had. I've also had a heart ablation because it was found that I had two pathways in my heart. And, three years ago, it was found I have adrenal disease, so I am on oral corticosteroids three times daily for that. Please don't think I'm saying that stress is your problem and you need an antidepressant. I'm not. I was under stress when this happened to me, and an anti-depressant helped me. That's what I'm saying. I don't know what the problem is for you, and I certainly don't know what would help, but maybe my experience can be helpful to you. If so, I wanted to share. I honestly think there is something wrong with me that my body can't handle stress--yes, some kind of severe dysautonomia for which I now wear a clonidine patch and do better with it--and I go into these symptoms as well. I feel for you, Carrie. I'm assuming you've been tested for POTS, for tumors, etc., all the things we all get tested for while trying to rule in or rule out POTS. Take care. Glad you came here. The members here are experienced (unfortunately) due to having to deal with illnesses for so long, knowledgeable thus, and so willing to share their knowledge, experience and compassion. Lindajoy

Sunlight never used to bother me. I used to crave it, like many of you here. I was always tan. But, last summer, I began to have symptoms in the sun, heat and humidity. The last few weeks, I've been able to be out in the sun for a few minutes at a time, but then I start to have symptoms. I just can't take it like I used to. Don't know why. Maybe a med I'm on? I don't know. I hope my body will change again some day and I'll be able to be in the sun like I used to be able to be. I used to really like the feel of it, too. Lindajoy

Oh, shoot. Too many 0's. I meant, 2 thousand dollars. Sorry. Lindajoy

Hi, everyone. I hate to ask, but do any of you know of a good dentist within a two hour's drive of Lima, Ohio (I am exactly one hour south of Toledo, Ohio, and one hour north of Dayton, Ohio, and one hour east of Fort Wayne, Indiana)? Maybe in Columbus, Cincinnati, Toledo, Fort Wayne? I had a root canal done several weeks ago. I had pretty bad pain and infection in the broken tooth. Anyway, I got very sick from all the work, medications, etc. It took weeks to recover. The dentist, then, would not put my crown on because he said he wants to work on all my other teeth first, re-filling broken fillings and cleaning my teeth. In other words, he's holding my crown hostage until I agree to all this other work. There's nothing I can do about it. He won't budge. Lately, I've had bleeding in this dead tooth and pain is starting again. I'm sure it's getting infected again. Too, I've already paid this dentist over $20000.00 for what he's done with the root canal, and that is without the crown, and with no work to the other teeth. I truly can't afford him (I have virtually no dental insurance). So, can any of you recommend a good dentist around Northwest Ohio? One who will care about my health conditions, too, that we have to be careful of when giving meds? Thanks. Lindajoy

You know the worst for me, though, was when I worked in a prison (I was a prison librarian for three and a half years and loved my job), and I would have health problems and need to get out of the facility quickly. Well, there's no "quickly" to trying to get out of a prison facility! Used to make me a nervous wreck because the nurses in the prison weren't, well, very good--I had a bp of 154/45 one day, felt awful, was about to pass out, and one said, "I wish my bp was that good. That's a great blood pressure." Really? Anyway, I couldn't pass out in front of a room full of inmates, so I'd have to hang on until we could clear the room during "count," then I could be as sick as I needed, until count was over and the inmates came back into the room. Then, I'd have to be absolutely strong and healthy again. Glad I don't work there anymore, although I loved my job. I, too, wish I could work again. I miss normalcy, like having a job I can complain about! Lindajoy

Yeah, someone started a post on here about service dogs. I love dogs. I would love to have one, but with my being in the hospital so often, it would be a disservice to the dog. That's one of the things I want some day, when I'm stable: a dog. Lindajoy

Well, to me, it sounds like you may have seen a doctor who truly was not as familiar with POTS as he should be to give that diagnosis. Do you know his reputation for having POTS patients, for knowing about POTS, for treating it? Sounds to me like you definitely could have hyperadrenergic with those test results, but I'm not really up on the ins and outs, but I'm sure there are others here who can be more helpful and accurate. Lindajoy

Oh, I'll definitely keep her in my prayers. Please let us know how she's doing. Hugs, Lindajoy

I've had ovarian cysts for eons. Mine grow huge before my periods and cause a great deal of pain. I've been told to have ultrasounds over and over due to them, but all they say with each ultrasound is, "Yep, ovarian cysts." Then, I'm told to go back in six weeks for more ultrasounds (outer and inner--ouch!). Lindajoy

Ophilialit, Welcome. I'm sorry you have to deal with this dratted condition, but I'm glad you found this site. You're right--great place to talk and feel comfortable in your own dysfunctional skin, and organs, and bones, etc. You do have a great sense of humor with all you deal with. The Itchy-Scratchy type cat you have as your icon is a treat, too! I just wanted to tell you, I have wonky vision in my right eye a lot, especially in the mornings. I've had doctors do everything to it but biopsy it in order to find out the problem with it, to no avail. It hurts, too. No idea. And, I'll be awed, too. 60 hours a week? I used to work 60 hours a week, then POTS took me down to, I'm happy if I dust my house once a week. Wow. You are driven, bless your heart. Oh, wanted to ask you: how were you diagnosed with POTS? Were other things ruled out, like carcinoid, pheochromocytomas and Addison's? I'm wondering just because of the shaking you get. I get that, too, but it's when my cortisol is low. I have Addison's along with Dysautonomia, along with a lot of other stuff. In fact, I have all you've listed, except the inflammatory stuff, which I probably have but don't know specifically. Well, I've rambled on enough. You take care, glad to meet you, and I look forward to talking with you. Lindajoy

Wow. I wonder if I could train a dog to detect low cortisol levels in me, for my Addison's. Sometimes, I don't "get it" until it's too late, and I've let myself deteriorate into a full blown adrenal melt down. Not to sound stupid, but I think I've heard that some service dogs can even be trained to call 911 if necessary? That would be great if I'm in a crisis, home alone and can't get to a phone. Good ideas here. Thanks for posting this. Lindajoy

Welcome. I'm glad you found the forum. Lots of great information and support here. When you wrote, "I can't even figure out why I would get POTS," I just smiled. How many of us have said the same thing, and continue to say it?! I say it all the time, I know. "How did I get this? What happened to me? I was healthy, I was in shape!" Ugh, the human body is complex. One never knows. But, good that, when we do develop something like POTS, there's a great group just right here on your computer to come to, to help. Again, glad to have you here. Not glad you've got POTS, but glad to meet you, just the same. Take care and hugs, Lindajoy