KathyP

Thank you Everyone for your kind words and good advice. I went to my Doctor yesterday and we discussed everything. He told me to continue my female hormone compounding with my GYN, since this is the only aspect that has been working. As for the Thyroid, I was on such a low dose that the pharmacist told me to break the pill into pieces. My Doctor told me to STOP taking the synthroid, because he seriously thinks that I don't need it. And, if I continue to take it it will cause more problems. He had a very good point. Dysautonomia mimicks several disorders including hypothyroid and hypoglycemia. He checked all my blood levels that my GYN did and still thinks that I shouldn't mess with the thyroid. He then told me that when my body levels off with the estrogen/progesterone/etc. then all the other hormones will follow suit. My body is recognizing an imbalance somewhere and is in an uproar. So all of the other hormones are trying to compensate to repair the problem. It is best to level one set of hormones at a time. That way we can see how the others will react. So I think, for right now, I will take it slowly and see what happens. I tell ya, since I am off the synthroid I am feeling so much better. Thanks again, KathyP

1. KathyP 2. 39 3. MVP/Dysautonomia, Inappropriate Sinus Tachycardia, Vasovagal Depressor Syndrome, Severe Panic Disorder, Depression. 4. Formally diagnosed at age 39, but have been living with symptoms all my life, which have been gradually getting worse over time. 5. Oregon, Ohio 6. Symptoms at worst: HIGH ANXIETY Palpitations that throw me into severe panic attacks. Dizziness; Homebound, terrified to drive or go anywhere. Agoraphobia Extreme depression and fatigue. Tachycardia and weakness in arms and legs. Feeling of unreality. Exercise intolerance. Over stimulation of the senses. 7. Symptoms at best: Tire easily, somewhat off balance. When I am at my best I tend to over due and pay for it the next day at my worst. When my tachycardia flares up I can control it. This is how I know I am at my best. Mild anxiety 8. Meds/Treatments that didn't work: Zoloft, Paxil, Celexa, Buspar, Effexor, Florinef, Metformin and Synthroid. Screaming and cursing. Feeling sorry for myself and praying that this all disappears. 9. Meds/Treatments that did work: Xanax, Toprol XL - 25mg per day, increased salt intake, DRINK DRINK DRINK, green olives, getting as much sleep as I can, walk and exercise as much as possible, keep cool, doing things spur of the moment instead of sitting and thinking about the negatives of it, and most importantly LIVE for my kids, husband and myself. (This is a great topic tread!!)

Hi Everyone; A little over 2 months ago I, along with the advise of my GYN, decided to try hormonal compounding. It has been almost 3 years since my hysterectomy. I had my bloodwork drawn and hormone levels studied. I was then given Metformin, and my female reproductive hormones in a cream. I was doing very well with this. I started feeling so much better. I was extremely excited about it. Then I started with synthroid because my TSH (thyroid stimulating hormone)levels were very high. After taking this I started feeling very symptomatic to the dysautonomia with mind fogginess, tachycardia, palpitations, sweating, and fatigue. The synthroid also made me even more heat sensitive. It was aweful. At first I thought it was the Metformin, which was given to me because of my insulin resistance. I was doing more physically and stay away from sugars. But, after stopping the Metformin, I started experiencing more symptoms from the synthroid. So I talked with the pharmacist that is doing the compounding and he suggested that I cut back on the synthroid. I decided to stop it all together. I am now feeling better. I am going to my regular primary care doctor tomorrow and will talk to him about it. I am now only on the estrogen, progesterone, etc. I am on a beta-blocker which is working quite well for me. I now have a better understanding for dysautonomia. It has so many different aspects to it. It affects every part of the body to the point of me being extremely sensitive to everything. I have learned that, yes our bodies are each unique, but each has it's own way of regulating itself. What is a normal hormonal level for one person may not be the right hormonal level for someone else. I have also learned that it wasn't my hormone levels that were off balance. I just need to slow my nervous system down so my levels can balance out themselves. And, no matter what I seem to do, I can't seem to do anything about the panic/anxiety attacks and the agoraphobia that come with it. When I explained the way I was feeling to the pharmacist he told me that he never heard of dysautonomia. He then told me that he thought I should get a CatScan to check for Multiple Sclerosis. I took that with a grain of salt (no pun intended). He is, after all, just a pharmacist, not a doctor. So this is the short lived trial and error for trying out hormonal compounding. Like I said, what works for one may not work for someone else. Dysautonomia is such an unknown syndrome. I will always look for ways of making it known and finding ways to fight it. Take care!! KathyP

Hi Dizzygirl: All I can say is: YES YES YES, every day of my life!!! We should call it the Sleeping Beauty Syndrome! I'm still wondering what apple I ate. You are truly not alone!! If you ever find a good remedy for this, please post it!!! Take care. KathyP

Hi Persephone; I get chest pain all the time. It gets more intense when I am panicy or under some stress. Ten years ago, when my dysautonomia symptoms started, I would have such painful chest pain that I would go to the hospital only to be sent home. I once went to see my doctor when I was having an anxiety attack, so he could see what I go through. He explained to me that when my body is in a panic or stressed all the muscles tighten up. During this we have a hightened awareness of our heart rate so we can also feel the surrounding muscles more also. He then gently pushed on the center of my breast bone with one hand and his other hand in the middle of my back. I almost went through the roof. He told me that is chest wall pain. It is scary, and my panic gets worse the more I think about it when it comes on. Stay strong!! KathyP

Hi Christine; I don't know if I have felt like I am on top of the world but I can relate to a similar "drunk" feeling with dysautonomia. I was not diagnosed with POTS, but I do have IST, MVPS/dysautonomia. I get brain fog quite often with feelings of disconnection. But my body goes into alot more panic when I feel this way. I can't stand that feeling. I would guess that your feeling this way much more since you aren't taking any medications. It would be a good idea to talk to your doctor about this feeling. Ask him if your heart rate and BP can give you symptoms like this. Good luck on trying for a baby!! KathyP

Hi Janine; WHAT IS IT ABOUT WAL-MART??? I get very symptomatic when I am there also. I have had so many panic attacks and dizzy spells that my symptoms start when I am in the parking lot. I really do think it is because the store is so big! There is way too much stimulation in there for me. While walking around the store I feel like I am walking a couple of miles. My Cardiologist told me that when I go shopping I will only be able to go in, get what I need and then leave. I don't think anyone can do that going into Wal-Mart. I feel bad for you for having such an aweful experience, but I am glad that you are OK now. Your comments were so funny, especially the IV one. And I am sure you knew more about what was going on then the EMS did. I will use the motorized carts from now on. I had a difficult time the last time I was at Wal-Mart. But I have to "get over myself" too. Heh, that's what they have those carts for anyway. Why go through the stress and suffering. Take care, KathyP

Dear Kite 7; HERE HERE!!! WELL SAID!!! I couldn't say it better myself. Obstacles are a part of everyone's life. That which does not kill us makes us stronger!! KathyP

Hi Chrissy; You say you have pain below the bellybutton, a bad odor, irregular menstrual cycles and it is not from urine? To me it sounds like a gynocological problem, possibly an infection. It would be a good idea to see your regular gynocologist, who does your pap tests, to do an exam. Take care! KathyP

Hi Carmen; Sorry if I misinterpreted your question or what you are looking for. Since you are a masters level therapist I would love it if you can give me some pointers on how to help me as well as my children understand my illness. I would like to know the details of where and when your support group is in place. I am sorry if this is a dumb question but is your example hypothetical? Children of potty training age usually don't have that much of a grasp of understanding a parent's illness and using it as a compromise. I don't think their thinking is that far out of the box. Potty training age is usually between 2 - 3 years old. If the child were older, say 5-9, I could see where being open and honest would help with this dilemma. Again I apologize for seeming scatterbrained, but, it isn't quite clear to me what you are looking for. Are you looking for coping mechanisms from a childs point of view in regards to a parent's chronic illness? Or, if certain difficult or abnormal behaviors of children are attributed from a parents chronic illness, and how are these dealt with? As I mentioned before I can only give from my own experiences. Everyone raises their children with the best of their abilities. I feel children adapt to what they know. Speaking as a child of an ill parent I can tell you that I was raised respecting my parents. And we did what had to be done. I felt very bewildered and alone when my mother died, understandably so. As with raising children, I think people handle things on an individual basis pretty much the same whether there is chronic illness in the family or not. With both parents around children will find normalcy through any obstacle. Children only know what is normal by what they have lived. Each stage is a new experience for both child and parent. What else can they compare things to. Each child is different, apple to oranges, even in the same family. There are good days, and there are bad days whether we are rich or poor, or sick or well. I remember doing a study in my college psyc class, many many years ago, about coping skills of Latch-Key kids. I am sorry if I am so off base here. Sorry if I can't help in any way. Melissa's post on her book recommendations sounds like a good place to start your search or in the archives as Tearose suggested. Good luck in what you are looking for. KathyP

Hi To All; I was reading all of the post to this subject and felt I needed to put my 2 cents in!! I have been here since March, or around that time. I have read the forum rules when I started and since then I have read updated clarifications of those rules a few more times. The rules seem very clear cut to me. This is the DYSAUTONOMIA INFORMATION NETWORK. I understand that it used to be POTS place and that some of you have been here for a very long time. I understand why Michelle changed it from POTS place to DINET. From what I read all of the post here have been very informative and extremely supportive. ALL of the REGULARS here seem to be very friendly, loving and supportive people who really care about helping others. After Michelle posted her explanation here, again, and explained her extremely hectic schedule I hope everyone understands the complete task she has before her. And, with having POTS herself should help to put everyone in her shoes to see what she really has to tackle. I hope I don't offend anyone by saying this, but, the referance to NEWBIES and OLDIES should not be used. I'm sorry but this puts a stigma on people new to the site and it also divides members into 2 catagories. WE ALL bring something to the table to make this forum a helpful tool for people newly diagnosed with Dysautonomia. Someone may know all there needs to know about POTS, but they might not understand about irritable bowel or NeuroCaridogenic Syncope, which are also factors of Dysautonomia. I don't think anyone did anything wrong to cause the clarification about the rules. If I may use a metaphor it would be this: The Dysautonomia Information Network is like a train. We all get on this train looking for answers and support from others who have the same situations as we do. At first we were scared. We were just passengers. Then we learned more and gain confidence to become a boxcar, or a passenger car filled with experience and information ourselves. Which is very important here because this is the train a new comer with Dysautonomia wants to get onto looking for new information. And remember, the tickets are free!! Also, when we, ourselves need information or support we rely on eachother. Now this train is growing longer and longer. Each seperate car has something to offer to new passengers, which is equally important to the other cars. Michelle's job is the Engineer and Nina is the conductor helping Michelle. Michelle has to drive the train, look out for oncoming trains, make sure that the tracks are clear from debris so we have a smooth ride, and has to check out all new boarding passengers. She also has to follow the rules of the national railway system. She does all of this and has to find time for her own life with her family and other aspects of her life. I think the recent misunderstanding stems from some people feeling that they have done something wrong. My guess is that no one has. NO ONE HAS CAUSED A TRAIN DERAILMENT!! One of Michelle's jobs is to make sure that HOBOs don't get on the train for the wrong reason, and that some of the cars don't jump the track. I feel that this car has and is still chugging along smoothly. But, and I hope I don't offend anyone, each of us as cars is not solely owned by DINET. We can stop and sit in a train yard somewhere and visit with other cars. OR Someone can even become an engineer of another smaller train and cars can go from trainset to trainset. (meaning getting together in a seperate chat rooms somewhere else to visit with eachother or getting personal e-mails and conversing that way on a more personal level) But with Michelle's hectic schedule, she may not have any time to set chat rooms up. I am sure it is also expensive to add this feature to this site. That doesn't mean that it can't be done. There are plenty of us here to go off and start these different kinds of things. I feel that DINET is a wonderful place with some very wonderful people. Michelle should be commended for getting the train rolling. And now because of this site there are much more people that know even more about Dysautonomia. And if some of us want to branch off and start chat rooms, support sites or heck even cyber card playing leagues that would be wonderful. The more we spread the word about this illness and the more we support eachother the better. But I do agree with Michelle, this site is for Dysautonomia Information. This is the hub and it is a great place to start. KUDOS to Michelle!!!!!! Again, I hope I didn't offend anyone. Take care!! KathyP

Hi Carmen; GREAT QUESTION!!!!!!!!!!!! As a child, my mother died of cancer when I was 8 years old. Back then it seemed like NO ONE talked about anything. It wasn't until I was much older that I fully understood what she went through. But, one thing was for sure, no matter how sick she was I knew she loved me because she was there as much as she could be. A large part of her is still with me today because of that. Now as a mother of 2 children, ages 12 and 6, and myself having dysautonomia, I find it very difficult to be flexible and fast paced as other families are now a days. When it comes to my illness, I am very open and honest with them. My daughter lets me know when I over explain things and reassures me when I get disappointed that we can't do fun things I'd like to see them do. Guilt is not an option!! Children should be allowed to feel angry, disappointed, and sad, but should be taught that parents feel that way too. What is most important is that everyone's feelings count. Honesty is best! If they can ask the questions they are old enough for the answers. And it is really surprising what and how much they really understand. Compromise! What you can't do in the hot sun, you can do in the cool of the evening. If you can't go for a walk with the kids, take them to the park and watch them run. If you can't be there for them physically you can always be there for them mentally. Either way, just being there is what stays with them always. Having an understanding and supportive husband, who is a great father helps tremendously. If not, loving and supportive friends and families works well also. This is all I have right now. I don't know if you are a parent yourself, Carmen. But being a loving parent should come naturally whether you have a chronic illness or not. No matter what the situation love and understanding is what helps children the most. Good Luck!! KathyP

Hi Mom4cem; I have the exact same thing you have. I have MVP dysautonomia, but I was also diagnosed with vasovagal depressor syndrome and IST (Inappropriate Sinus Tachycardia). I have never thought of what I have as adrenaline rushes. I was told they are anxiety and/or panic attacks. I am thinking that it is the same thing but either way I can't stand them. They make me feel completely debilitated when I am in one. "Knock on wood", I have not fainted, blacked out, or lost control in the past 10 years of having these spells, but I am so terrified that I am going to. I have gotten to the point of total agoraphobia!!! I am fighting my way back little step by little step. I feel so guilty being like this. I have 2 children, a daughter 12 and a son 6. My daughter plays softball and I love watching her, but a couple of weeks ago I got that rushing feeling out of the blue and had to lie down in the van until she was done playing. Now I can't stand the thought of going back to the ball diamonds because I don't know what triggered it. When I have an attack I have xanax to calm me down but it makes me so tired it defeats it's purpose. I can't say that these spells have gotten worse over the past 10 years. They feel the same as they did the first time. I think that my fear of them has gotten worse. I still get them out of the no where and when I worry. Everytime I have to go somewhere my adrenaline starts rushing, my heart starts pounding and I get this overwhelming feeling of terror. It is like I am living a nightmare while I am wide awake and there is nothing really to worry about. I now know exactly what you are talking about. I now know these episodes won't kill me. I now know I don't have anything to worry about. But I still can't stand these rushing feelings of fear. I was just diagnosed with dysautonomia within the past year. I am also trying a hormonal balancing compound to help keep my system completely balanced. This seem to be helping so far. I truly feel that going to a very incompetent doctor in the beginning of my symptoms and not knowing what was going on made me so terrified for so many years that it has become ingrained in my thinking. I am trying so hard to get past all of this worrying about every little twitch and pain. This is how it can get worse for you, WORRYING ABOUT IT!!! Now that you know what you are dealing with take the steps to keep your system balanced. Find a good doctor you feel comfortable with that knows about dysautonomia. I too used to love to go out and have a few margs, (their one of my favorites) but haven't in a long time because I am terrified and that just thinking about going throws me into another panic. Eventhough you can't drink like you used to at least you can go out. Embrace that!!! LIVE!! I don't mean to sound like a downer. I get so depressed because my worry made my symptoms worse and I wish I had a way to go back to the beginning knowing what I know now! I have been getting out slowly but surely. I do plan on getting back out and having a small margarita real soon, oh, with extra salt please!!! REMEMBER, SOMETIMES THE SYMPTOMS CAN GET WORSE IF YOU LET THEM!!! Thinking positive helps. Take care!!! KathyP

Hi Diana; I don't know how much your husband likes to drive, but my favorite vacations, with my family have been ones we traveled by car to see sights. My husband loves to drive and go on road trips. We prefer renting a car to do this, with unlimited miles. The cars are usually brand new and it will save on the wear and tear of your own vehicle. They usually have great running air conditioners in them also. This can be the least expensive way to vacation. We stay in hotels with swimming pools and free breakasts (so you don't have to rush in the morning). If you live on the East Coast: A great family destination for this type of trip is Gettysburg PA. There is no time limit, go at your own pace, and walk as much as you want. There are cassette tapes available, at stores in town, to take the battlefield tour in your own car. Very educational!! In the same vicinity is Lancaster, which is Amish country and, of course Hershey. Eventhough you can't eat much chocolate with dysautonomia, you can at least smell it when you enter the town. And Hershey Park would be great for the kids. I do know that Hershey Park is wheel chair accessable, and may even have them available. My favorite place out west would be driving around the Black Hills of South Dakota. There is alot to see out there. We were just there last summer. All the sights are easy access. There is Mount Rushmore, Crazy Horse and Deadwood. There are also many other sights to stop and see along the way. I do know that the farther north you go the cooler the temperature. I have alot of problems with fatigue, and anxiety, and these 2 place were no problem for me. My family and I travel this way alot to see the many sights in the US. I hope you find an enjoyable vacation you will cherish for a life time. HAPPY TRAILS!!! KathyP

Hi Trails; Welcome to the site!!! Morgan hit the nail right on the head. You should talk to your doctor about giving you an idea of where you baseline BP and heart rate are. Morgan; WOW!! Your description of the Vasovagal/Heart Rate response is the best, clearest and easy to understand explanation I have heard. Doctor are so much wrapped into medical terminology it is hard to understand when they explain things. Thank you for that!!! KathyP

Hello Everyone; Thank you so much for all your wonderful suggestions. I knew I could count on you!! I have been searching the net for the cooling vest and cooling neck wraps. I have found allot of options and will be having something on very soon. I have a swimming pool, but it is in full sun. I wait until evening to swim if the mosquitoes don't eat me alive first. I get allot of exercise with swimming. Mary from OH, I live in Oregon, just outside of Toledo. We really have the dramatic change of seasons here in Ohio don't we? Ethansmom, I feel lucky after picturing you in southern Florida right now, and being 9 months pregnant. My hats off to you!!!!! Laura, sure, I'd love to come to Canada. When I take summer vacations with my family we go anywhere north because it is much cooler during the summer. Canada has breathtaking scenery also. Thanks again everyone!!! KathyP

Hi Kit You are so funny!!! I have tried that spray tan stuff before I was diagnosed. It did work pretty well, but it faded too fast. I have reserved myself to the fact that I can't tan like I used too. So I figured that I am better off without a sunburn to add to my discomfort. Anyway, THANKS for you kind words. KathyP

Hi Julie; I had this same question posted roughly a month ago. I had a bad reaction to the first dose of the Z-pak (Zithromax - 5 day) which my Dr. prescribed for me. The first day dose was 500mg. That was all I took. I was so drained and fatigued I couldn't function. I was whiped out for almost 3 weeks. On my thread, alot of members suggested talking to the doctor about trying another antibiotic or taking a smaller dose. I ended up letting the Zithromax wear off and didn't need anything else. My infection hasn't returned. I hope you find what works best for you. I would suggest bringing it to the attention of your doctor so they can make a note of it in your chart and help you find something that works. KathyP

Thank you Steph and Dizzygirl; I plan to try the ice pack around my neck. I went outside in the evening and even soaked myself with the hose. I have a feeling that I am going to be nocturnal this summer. Take care, KathyP

Hello Everyone; Now that summer is, well almost here, I would love to hear about some experiences and suggestions with dealing with the heat and humidity. Along with my dysautonomia I have a severe panic disorder. I have never been able to go into saunas and hot tubs are out of the question. But here in Ohio, the past few days have been in the 90's and is quite unbearable. It feels like a sauna just stepping outside. I am not sure if I am just very sensitive to the heat or if this is another obstacle with dysautonomia. Eventhough I am a winter loving person, I used to be able to handle working in the garden or just sitting outside during the summer. I don't remember the last time I had a nice tan. Grant it, I do function much better in cooler months I seem to be getting worse with the heat. I get very depressed when I can't go to my daughter's softball games or play outside with my kids. These past few days I have been taking salt tablets and loading up on the water and sports drinks, but I still feel so drained. When I am cool I feel pretty good but I can't stay inside the entire summer. I would appreciate any input. Thanks for listening, KathyP

WOW! What a great idea. It is so interesting to see where everyone one is from and to understand how wide spread we are. With all of our world wide coverage, we can really get the word out as well as find others that need help also. I live in Oregon, Ohio, just east of Toledo. I grew up in East Toledo. I am extremely thankful for the cool breezes off Lake Erie. I do prefer cold weather to the hot summer. In this area there is a saying, " Wait 15 minutes and the weather changes!" I have heard alot of people talk about Dr. Grubb. I recently found out that there are people I know that see him at the Medical College of Ohio in Toledo. But, right now I feel that my team is doing a good job of getting my dysautonomia under control. But it is great to know that a man of his expertise is in close distance to me which is why I feel this map is an excellent idea. KathyP

Hello Everyone; I have been on a beta-blocker for almost 2 months now. I am on Toprol XL, 25mg per day. I have asthma which is controlled with Advair, which my doctor slightly increased when I started the toprol. I was really worried about the effects beta blockers have on asthma. Once I got used to the initial adjustment to Toprol XL I was feeling better and my heart settled down quite a bit. But, the strangest thing happened to me today. Usually when I come into contact with animals I get severely asthmatic even when I use Advair. My family and I will be adopting a new puppy soon so we decided to go to see the 3 week old litter. The house we were in has both dogs living in it as well as the puppies. Even with the dogs the house seemed very clean. Before the beta blocker I would have been totally asthmatic after 10 minutes. But, I was amazed that I played with the puppies and their mom for over an hour and not once had a asthmatic reaction. I can't tell you how excited I was about this. I love dogs and to be in a room with so many of them, and being right down on the floor with them without having an asthma attack was very exciting for me, but unusual. Is there anyone out there that has had any similar reaction. I asked my doctor several times about asthma and beta blockers. I told him how worried I was. He told me that certain beta blockers at low doses don't have any effect on asthma. This proved true for me. I hope maybe this can help someone else. So if there is anyone out there that might be afraid of beta blockers with asthma and haven't tried them yet, please talk to you doctor about all of the different beta blockers that are out there and which low dose can work for you. I have found that beta blockers are a great tool to slowing the tachycardia and are well worth it. KathyP

Hello Everyone; Roughly a month ago I wrote about my doctors wanting my blood tested to see where my hormone levels were. With dysautonomia being an imbalance of the autonomic nervous system both my internist and GYN thought it would be wise to make sure that all natural hormone levels, in my system, were in balance. It was found that I did have low levels of estrogen, testosterone, and progesterone, especially since I had a hysterectomy. BUT, they also found that my thyroid and insulin levels were off as well. These results were sent to a pharmacist that specializes in hormonal compounding. He made up creams for me to use because I am very sensitive to new medications and have difficulty with side effects. I have now been on my hormonal compounding lotion for one week and I can already feel a great difference. I have NOT had to nap during the day all week. I also have much more energy. After the following week, and when I am feeling that my body is used to the new levels the pharmacy will give me the thyroid cream to add. This way I am not introducing all at once and I can tell what I would have reactions to. The reason I feel excited to share this with all of you is because, since my big dysautonomia crash in December, I am starting to feel a little better. I am hoping to feel back to my old self some day soon. There are some things that work for one person but may not work for another. This type of testing is usually covered under insurance. I want to share this with the hope that you might benefit from this type of testing also. Treating Dysautonomia is a balancing act. It would stand to reason to try to balance as much as you can within your entire system. My internist didn't know a great deal about Dysautonomia. Now, with constant questions I give to him, I have noticed that he does do research about tests or treatments and discusses them with me. There have been many suggestions I have brought to his attention from here. My GYN has been suggesting Hormonal Compounding to his patients for several years. But, it doesn't only include the reproductive hormones. It involved insulin, thyroid, cortisol and adrenilin also. All the hormones work together and work off eachother to help the body work properly. With my experience with this I hope this is one path someone suffering with Dysautonomia might want to look into. As always, I believe in discussing the benefits of any testing with your own physician. Thanks for listening; KathyP

Thank you Michelle!!!

Thanks Merrill and Ernie for you responses. I was not suggesting seperating into any kind of sub-groups. When a new person to the site logs on to this site they don't look for archives, they look for new information. I am no longer considered a "Newbie" here but still find new information being advanced. I hope I didn't ask the same questions over and over that irritated the "oldbies"(?). As long as I am not functioning normally with Dysautonomia I will always be looking for new solutions to better my life. Merrill, I was never diagnosed with POTS. My doctor diagnosed me with dysautonomia and he ordered a TILT Test with a cardiologist. That cardiologist diagnosed me with IST and Vasovagal Depressor Syndrome which are only 2 aspects of my syndrome. I also have agoraphobia, Mitral Valve Prolapse Syndrome, Polycystic Ovarian Syndrome, thyroid problems, Insulin Resistance as well as a severe panic disorder. I was told that these are all factors of Dysautonomia. The cardiologist told me to look up Dysautonomia and I landed here. Please Michelle; Let me know if I am at POTSPLACE.COM or Dysautonomia Information Network or DINET.com . Maybe that's my problem. I may have landed in the wrong place looking for information. If I am in the wrong place I apologize. I will inquire again with NDRF.com where I can find the information I desperately need for DYSAUTONOMIA. There is not many places to go for information about this syndrome. Now I clearly see why there is a need to clarify things at this site!!!!!!!!!!!! KathyP