LindaJoy

Thank you, Brenda. I am so sorry to hear that you're suffering so much, too. Have you had the tilt table test yet? I'm sure you have, but I just wondered. What doctors have you seen? Do you take any medicines? What helps you? I also have the adrenaline rushes that precipitate the shaking. My mom stayed with me last week for two nights since my husband had to work, and I was shaking so badly in the middle of the first night, that I woke my mom up. I took a Xanax and after an hour, it helped to calm everything down. I don't feel like they're seizures, but I guess I don't really know what a seizure feels like. I always thought that you sort of fogged totally out during a seizure and I don't do that--I stay fully aware. I can even talk, although my teeth are chattering so hard during these spells that I'm afraid I'll break them. I'm shaking, like I'm freezing, but yet my feet and hands are sweating. It's so bizarre. Please hang in there, too, Brenda. What a fun time we all have, huh. LindaJoy

Hi. I also have a lot of allergies and low tolerances to drugs and chemicals. (I was diagnosed with POTS ten years ago, but have an appointment in April to test for whatever else I may have along with it. Hopefully, that's it.) I didn't the allergies and insensitivities that strange since I read the article, "Postural Orthostatic Tachycarida Syndrome: Patient's Report on Causes, Symptoms and Treatment," found at http://home.att.net/~potsweb/POTS.html How many of you have read this? I think it's good. It gives a great deal of information. In it, the author, Christopher Calder, who suffers with POTS himself, talks about many POTS patients having "common allergies, uncommon food allergies and are highly drug and chemical sensitive." Further along he writes, "Patients with a history of bad drug reactions should be doubly cautious when considering drug therapy." If you've read his article, what have you thought of it? If you haven't, it might be worth your while to peruse it. It helped to ease my mind a little about all the weird stuff I experience with POTS. Let me know what you think. LindaJoy

Persephone, that is such exciting news. I was an English major in college, with a minor in creative writing. My literature focus was mostly poetry, and I loved it! I love the time period you'll be studying. How awesome for you! Best of wishes to you. LindaJoy

Thank you, EM, Mary and Kathy, I appreciate your honesty and support. I figured I would feel pretty bad afterwards. That's why my husband and I got a hotel room right at the Clinic for that night, so I wouldn't have to travel four hours home, feeling so bad. Right now, I'm mixed. I know this is it: I'll finally know all that I'm facing and be able to start dealing with it. But, on the other hand, I'll finally know what all I'm facing and have to start dealing with it. I know you've all been where I am and understand. I'm so very thankful you're here. Everyone, have a great Easter this weekend and know that all of you have been in my thoughts and prayers since I joined this forum. LindaJoy

Thanks, Everyone. Stacey, you asked a good question. I'm not afraid of the world at all. I used to love to go places, before this hit me. Now, when I go out, I come home and feel lousy for the next few days, so I don't want to go. Plus, I am afraid of having an attack in public and everyone staring--"You don't look sick." I get that a lot. Thanks for the words of assurance about the tilt table. I'm always afraid of things that affect my heart. I have been reading all I can about dysautonomia. I'm so glad for this forum and for all of you who are willing to share. For the first time in years, since I began having symptoms over ten years ago, I feel like I'm not crazy--I hope that doesn't offend anyone. The weird symptoms I have and report to my doctor to the response of, "It's stress, anxiety, there's nothing wrong with you, how's your marriage?" I now know are a part of this. That makes me feel better. But, I will feel a lot better (I hope) once my official diagnosis comes through in April. Does anyone know, how soon after my tilt table test will my doctor have my results and tell them to me? I know everyone's different, but I'm seeing Dr. Fouad in Cleveland, so anyone who has had her, did she tell you right away? I want to know as soon as possible. I think the stress of not knowing is really getting to me right now. Linda

You know, Black Wolf, my body does a lot of weird things, but fainting isn't one of them. I'm so thankful for that. I'm sorry for you! Take care of yourself! I understand about being stubborn. When this bout began about a month ago, I determined to find out what was wrong with me and learn all I can about it, thinking then that I could control it. Ha! I guess with this stuff, the closest you get to control is just becoming at peace that this is the way you're going to be and learning how to deal with all of the weird turns your body takes. Thanks, ya'll. Linda

Hi. Thanks for the responses. Ann, I haven't been in the loop much these days--spend a lot of time sleeping or with my feet up. I'm not sure what the new warnings are about SSRIs. Could you explain? Thanks!

Hi, everyone, I was just wondering if anyone's Zoloft or other SSRI has ever actually caused awful anxiety symptoms? I've been on Zoloft for a few years now, and I've noticed that I've begun to experience anxiety symptoms after taking it. Last night, the anxiety was pretty bad: feet and hands sweating, shaking, fingers crawling up my spine, increased heart rate, trouble getting a deep breath, etc. But, after a couple of hours, it got better. I take 100 mg an evening. Does anyone else have any experience with this? Any suggestions? Thanks! Linda

Thank you, everyone, again, for your support and encouragement. I have read a great deal about POTS, Dysautonomia and other autonomic disorders. I didn't realize there were so many. I typed out all of my symptoms and diagnosis for my Cleveland Clinic doctor so I'd be sure not to forget anything while there. I wondered if anyone else has a fear of leaving your house because of your health condition? I haven't been out of the house for a week, and that's just fine with me. The last time my mom took me to the store, I came home and slept for two hours. I was exhausted. I had a very hard time in the store, even though I held onto a cart the entire time and Mom cleared bottom shelves off so I could sit and rest periodically. Now, my husband wants me to go to the grocery with him, and I'm terrified that I'll collapse in the store or come home feeling absolutely awful. Does anyone else worry to the point of never really going anywhere? I know this sounds like I'm developing an irrational phobia, but I don't think so. I think I'm very rational in my fear, but I don't know what to do to overcome it. I just don't feel strong enough yet to venture out, but I don't think my husband gets it. Thanks for listening. Linda

Hi, there, I had an electrophysiology study back in 1998 because I began going into fibrillation, but the doctors couldn't find where my tachycardia was coming from. My doctor said that he could see overactive cells running around in my heart, and he debated blasting each and every one of them. Thank GOD he didn't because he would have blasted 1/4 of my heart away, and if he missed even just one cell, he said, I would still have tachycardia, so he just sent me home on a calcium channel blocker. Now, after reading what everyone here has written, I am so very thankful that the doctor did not ablate. I have had two severe tachycardia spells this month, one with beats around 200 that sent me to the hospital. They upped my heart medicine and sent me home. Since that time, I've had one spell but it didn't last long. I've yet to be officially diagnosed with dysautonomia (I was diagnosed with POTS 10 years ago but wasn't told anything about it). I've simply listened to my body, read a lot, asked a lot of questions and followed a lot of advice from people who have been there with this. The only people who I've known to have had a successful ablation are those who had the extra piece of skin in the heart that was causing the tachycardia but had no other POTS symptoms, or those who had a dual pathway (Wolff-Parkinson's, of which I have but it doesn't react) and had one pathway ablated AFTER doctor's saw that the tachycardia was being caused by the second pathway, and who had no other POTS symptoms. It's up to you and your doctors what is best for you, but if you have POTS and tachycardia is your body's way of trying to help you cope, then I'm not sure I would have an ablation if I were you. There are plenty of meds out there that will help with the tachycardia once the POTS calms down. Take care and please let us know how you're doing. Oh, and I had my fibrillation episode in February of my senior year in college. It had taken me six years to get through--went through a very ugly divorce and a severe bout with POTS that put me behind--so when I began with the fib, I was so afraid that I wouldn't make it to graduation and would have to drop out again, but I made it, and you will too. It may take a little more time, but you'll do it, and when you do, it will mean all that much more. Blessings to you. Linda

Hi, Christine, Hi, Frank, I'm new to the forum too, but I read your letter and I felt, even though I don't know very much about myself yet, that I wanted to write you and give you some support and encouragement. I was diagnosed with POTS ten years ago, but I was never given any information about it: what it even was, let alone its symptoms or what to expect. I have also been diagnosed with fibromyalgia, which causes me a great deal of pain. Christine, yes, I feel nauseous when someone touches my shoulders and especially the back of my head, when they are both in pain. My scalp becomes tender, but I think that's more from the neck pain and stiffness pulling on my scalp and making it appear to be in pain. I have many, many of the symptoms you have, and there are many days I am terrified that I'm not going to make it, but I always do. I, like you, have a husband who is very supportive, and that helps so very much. I find myself living minute to minute sometimes when I feel so bad. But, I've read many of the letters from others who are suffering and have taken their advice. I've added more salt to my diet and I drink gatorade daily. Both seem to really help. I eat small meals througout the day and make sure to not stand for very long. I prop my feet up as much as possible. I do make sure to walk some, though, as lying around will make it worse, I think. I currently take Cardizem CD, a calcium channel blocker, for my tachycardia, Zoloft to help slow me down and Xanax when I feel a really bad spell coming on. I have an appointment at the Cleveland Clinic Foundation on April 6th for a tilt table test to see what kind of dysautonomia I have--hopefully we'll find out then and be able to really start dealing with it. I pray the same for you, Christine, that you will find answers and be able to start getting back on your feet. It will happen. In the ten years that I've struggled, there have been only a few, maybe four, really rough times for me. I have symptoms every day, but most I can deal with. I've been blessed when I compare myself to some people whose stories I've read. Please know that there is help out there. Continue to search out a doctor until you find one who is willing to listen to you and help. Frank, continue to be Christine's rock because there will be days when she cannot be strong and will really need you to support her physically and emotionally. Blessings to you both. Christine, it will get better. You'll be in my prayers and on my heart. Please remember that, even though it feels like it, you're not alone. Linda

Thank you, Mary, Amy and Dawn for your support and encouragement. Right now, since I've yet to be diagnosed, my mind is leaping to all sorts of negative conclusions, which is very easy to do when my heart takes off or I have pain in different places all of the time. But, thanks. I'll try to stay calm. My endocrinologist seems to think that my tumor does have something to do with this, or at least he did years ago, but now he says he thinks I do need to see Dr. Fouad and see what's going on, so I'm not sure he blames the tumor anymore, especially since it seems to be in remission and has been for some time. I have learned a lot from all of you. I feel so badly that so many people seem to be suffering with some sort of dysautonomia. I've been through so many doctors over the past ten years, most of whom told me that I was suffering with simple anxiety, or that I needed to go to church more (honest, one of my area's supposedly top heart doctors said I needed to go to church more and I'd get better, which I know God can heal, but I really don't think that's what he meant,), or that I was nuts--I was sent to a psychiatrist more than once for all of my "stress." Anyway, I will keep you all posted. I go for a tilt test on April 6th. I'm very nervous about it, for one, I don't know what to expect and two, I'll know more of what's going on, and maybe I'd be better off not knowing. There I go again. Anyway, thank you for being here. I'm sorry that you are, for you and what you're going through, but thanks.

Hi, everyone. My name is LindaJoy. I've been reading your messages for most of the day and am so happy to know that I'm not alone. Ten years ago, my endocrinologist at the Cleveland Clinic said that I have POTS--he manually checked my blood pressure and pulse as I layed down then stood up. But, he never said anything, then, about it, such as what symptoms I should expect or what POTS even was. Since that time, I've been diagnosed with fibromyalgia, irritable bowel syndrome, an active pituitary gland tumor, reactive hypoglycemia, raynaud's syndrome, gastritis / acid reflux, tachycardia, anxiety disorder, mitral valve prolapse, Wolff-Parkinson's syndrome, severe food allergies and medicine intolerances, eye strain (pain, too, so got glasses) and low blood pressure (drops at night). I also have severe night sweats, chronic fatigue, a buzzy feeling all the time (like adrenaline rushes), buzzing in my ears, breathing problems (like I have to think about getting a deep breath), tremors, dizziness, fuzzy vision, confusion, tingling especially in my calves and calve pain, irregular periods, a hot face but no fever, frequent urination, headaches, neck pain, weird body temperature fluctuations, cold hands and feet yet they sweat too, difficulty swallowing at times, itchiness especially in the cold or after a hot bath or exercise. I feel like I'm falling apart. I see Dr. Fouad at the Cleveland Clinic the first week of April for a tilt table test and diagnosis. Does it sound like POTS is to blame for all of my symptoms and syndromes to all of you, or does it sound like I have other things going on? I'm scared to death that I have Shy-Drager Syndrome or MS or Parkinson's. What do you all think? Hope to hear from you all soon.