KathyP

Hi Ramakentesh; I would think if people didn't feel that way in a mall they wouldn't have POTS/Dysautonomia. This is such a typical symptom. Over STIMULATION!!! OOHHH, and I can't stand the feeling of unreality. It's like my nervous system is on overload and I get that feeling of it shutting down. When I finally get out of my POTS hole I want to go to the mall with Tearose!!! I have such a hard time losing weight. I went to the grocery store, yesterday, for the first time since Christmas. I thought I would be daring so I went with my friend. Toward the end of shopping my face was red and my lips were turning blue(?). My heart was racing. But I made it some how. And, I know you will too. Take Care!!! KathyP

Hi Roselover; I am glad to hear about your finding a knowledgable doctor. I am starting to see this happening more and more in this forum. That is such great news for all of us. I truly think that someday this will be a well know syndrome and more with be learned. (sorry if I seem to be day dreaming) Hope is always good! With dysautonomia being so complex it is no wonder that you have an Endocrinologist that is familiar with it. When I first learned about POTS I thought that cardiologists were the main doctors that were familiar with it. This is a very positive sign. My PCP is an Internist and he is working with my POTS. The only thing that still bothers me is those doctors out there that still consider a psyciatrist the only doctor to handle this syndrome. The more we take a stand the more that will hopefully change!! All my best wishes to you. I am glad you found a silver lining!! Take care, KathyP

Hi Linda; I am so glad for you. I am not familiar with Dr. Grubbs. I have only heard about him here. It is wonderful that you found a competant doctor that had the experience of interning under him. I have heard that the Cleveland Clinic is a great place and has top notch doctors. I was first diagnosed with asthma 12 years ago. Sometimes I think that is where it all started. The bad part about it now is with asthma I can't take certain medications that would help me with POTS. I live outside of Toledo. I have found that there are doctors around here that do know about dysautonomia but don't know what to do about it. My cardiologist, from St. Vincent's Hospital in Toledo diagnosed my POTS and seems to be very knowledgable about it. I think you just have to look until you find a good one. You are so lucky and I am so happy for you!! Congratulations on finding your "needle in the hay stack"!!! This great news alone must have taken alot of stress off your shoulders. Take care!!! KathyP

Hi Linda; YOU GO GIRL!!! I know how hard it is to fire a doctor you have been seeing for so long. There are to many out there to stick with one that isn't willing to work with you. I get irritated when doctors try to make you think that they are doing you a favor by treating you and they know more than you do. More doctors need to be taught that they are working for us not the other way around. Eventhough some of us have insurance we are still the reason they are getting paid. Some doctors get too busy to care and they end up pushing you out like you're on an assembly line. You'll find someone who knows what you are dealing with and can work with you. It may take time or this new one may work out for you. Don't be afraid to tell them what you expect them to know and do. I admire your need to know more and your guts to try new things!!!! Take care! KathyP

Hi Merrill; I am so sorry to hear you are having a difficult evening. I can't take bb since I have asthma. When my tachycardia flares up and really gets going the only thing I can do is lie down and put my feet up. It has been so hard for me to get it under control. My resting rate is still over 100. The one thing I have noticed that has really helped my heart rate to slow down is going back on my estrogen. I was off of it for a few months so my doctors could figure things out. I know I talk alot about my hysterectomy but I have noticed that since then my POTS has gotten worse. There were nights, before I knew I had POTS, I felt such hopelessness I would cry myself to sleep. I am not sure what situation you are in or your age, but have you considered a hormone test to see where your levels are? Trying to make sure everything in your system is in balance might help lessen the need for certain medications. I wish I had more advise for you. I know how you feel. When I feel like that I take my xanax, go to bed and pray for a better day tomorrow. And don't worry, it will be. Please know that I am praying for you. I hate nights like the one you are having now. KathyP

Hi LindaJoy; You said you were being treated for a pituitary gland tumor. Are you still being treated for it? If not maybe the problem came back. If you still have the tumor maybe you can talk to your doctor about having it removed. I, myself, get very sensitive about the psychological aspect when it is attached to Dysautonomia. When it is addressed in the book, I think they are looking at it in a psychological way because of the depression, guilt, and anxiety attacks stand-point. I am now trying desperately to overcome Agoraphobia. I got this way because of having so many panic attacks while out in public. It was more comfortable for me to stay home. I dread having to go out. When this issue arises the only thing that doctors can label this under is psychological for the sake of not knowing what else to put it under. I don't feel I am crazy at all. I know that NO ONE with this syndrome is crazy. I talked with my doctor about seeing a therapist. He told me that he didn't think I needed to see one and that I just needed to get my panic attacks under control. He sent me to a psyciatrist to see what she could recommend. She agreed that I didn't need therapy, but she did push more drugs on me. And all those drugs did was keep me in bed with horrible side effects for a week. Needless to say, I don't see her anymore. It is all about trial and error. You need to find out what works for you to make you feel good. Sure, I can't stand all of the labels either, especially the crazy ones. But, if it weren't for the labels then I wouldn't have a clue on what to research and understand what I am dealing with. This syndrome as well as our physical make-up are extremely complex. Knowledge is power!! I know there are people with MVP who don't have Dysautonomia. I know some personally. But, I do know those of us that have both. My doctor seems to think that my MVPS, Dysautonomia, POTS, and vasovagal depressor syndrome are all connected together somehow and there is nothing I can do about it. I know I must have had problems with all of this for a very long time because as a teenager my gynocologist could not figure out why I was having such difficult periods. His first thought was a pituitary problem but then found out that it was an estrogen problem that ended with a hysterectomy 2 1/2 years ago. I am very lucky that God blessed me with 2 wonderful children. So I personally understand that I was born with all of this and the older I get the more the symptoms become pronounced. I don't mean to be so winded here. There are so many doctors that have never heard of Dysautonomia. And some of the ones that do look at it as no big deal because it isn't life threatening and they don't know what it is like to live with it. That is what we have to deal with. All we can do is stay strong, think positive, continue searching for answers and continue to help eachother here. Take care! KathyP

Hi LindaJoy; I have the same book. It is truly enlightening. I read it cover to cover twice. I even took it to my Dr. and he told me that he couldn't believe that I found a book for what I have. I feel like I have told my story so many times so excuse me if you heard it before. When I finally found a doctor that was willing to work with me the first thing he did was a bunch of heart tests, 24 hour halter monitor, EKG, echogram. The very first diagnosis he gave me was Mitral Valve Prolapse Syndrome because along with the MVP was the anxiety attacks and my asthma. Then when he couldn't control the symptoms he did further testing which led to the TTT which proved POTS and vasovagal depressor syndrome. I guess either way you slice it Dysautonomia is so complex that is affects every aspect of the autonomic nervous system. I am sure you have read all of this in the book. The simplest way I understand it is that it all is in blood volume. Eventhough we have mitral valve prolapse it doesn't mean there is anything seriously wrong with our hearts. But, when the heart speeds up or I have palpitations my nervous system automatically thinks something is wrong and I am in danger so the rest of the nervous systems kicks in. I feel like I am in danger and I have to run. I feel faint. If I'm on my feet while my heart pounds fast the blood volume can't keep up so the blood pools in my legs and my blood pressure drops. I could be wrong medically but it sure does feel like it makes sense. With all of the research that I have done as well as reading that book I really don't think anyone has yet figured out why some people with Mitral Valve Prolapse/Dysautonomia have POTS also. It just seems to be something that goes hand in hand. I am glad that you have a diagnosis. The more you learn the better you will feel. I have to ask, what kind of symptoms were you first having when you knew something was wrong? What led you to think you had POTS before you had the TTT? Have you experienced severe panic attacks? Sorry if I'm asking so many questions. When the doctors first told me what I had all of the different diagnosis names were very confusing for me too. Take care. KathyP

Hi LindaJoy; I've been waiting to see how your tilt table test went. Obviously you got a diagnosis of POTS!!???!! I hope the test wasn't a terrible experience for you. I remember how concerned you were about it. I have researched Dysautonomia and I know that my POTS is a factor of that syndrome. Along with POTS I was diagnosed with Vasovagal Depressor Sydrome. When I was diagnosed my cardiologist told me that I had it since the day I was conceived. This makes sense to me because my Dad has Neuro CardioGenic Syncope. As for POTS, it can be a secondary symtom to several different things. Was there any other diagnosis that your doctor gave you during your tilt table test that accompanied POTS? If not, I would have other tests done to be sure there isn't anything else going on. If the doctor at the Cleveland Clinic refuses to do them then it's time to look for one who will. Your insurance will pay for the testing not the doctor and it never hurts to check things out to be sure. I would ask the doctor about the possibility of any heart problems or diseases, and the hormonal balances of adrenelin, cortisol, and estrogen. I've read about POTS being brought on from a virus. So, there can be many reasons why. These are just suggests. I am also the type that needs to know how and why. The more you know the better you will handle what you have and the better you will feel. I was going crazy for 8 years because I had a doctor that just brushed me off and sent me on my way. He never gave me my what or why and never did any testing on me. He just told me I had a panic disorder and pushed drugs on me. I now have a doctor that gave me a why and how and is willing to work WITH me. You'll make it through. You'll find the answers you need. I know what you are feeling and I want to reasure you that you are not alone. Take care, KathyP

Dear Roselover; Katherine and Funnyfrog have excellent ideas here!!!! Start low, baby steps. But you have to keep moving. I was on the couch for the month of January. The only excercise I was getting was going to the bathroom and then back to bed. My husband did everything for my kids. I was so fatigued and totally drained. I began moving little by little. Now I make it a point to at least go outside for a walk. The better I feel the farther I walk each day. I may feel very tired but I feel like I am getting back to something more normal. I love to garden too. Within the last few weeks I realized what hard work it is, but I keep doing it even if it is a little bit each day. One thing I have to mention is about 2 1/2 years ago I had a hysterecomy. Since then my POTS and fatigue was getting worse. Recently I had my hormone levels checked and my doctor found that some were very low, especially my estrogen. I went back on the replacement patch and find that I have more energy. So if this may be an issue for you, it may be worth it to look into. Don't get discouraged!!! You will find what works best for you. The main thing is to keep moving and drink lots of water. Take care!!! KathyP

Hi Mom4cem; I was diagnosed with Dysautonomia by my PC Doctor last year but have been living with it for the past 10 years. I was also diagnosed, by a cardiologist, this past December, with POTS and Vasovagal Depressor Syndrome. I have had what you are experiencing for a very long time. I can't take SSRI's because they make me feel too weird. I can't be on beta-blockers because I have asthma. So, for the last 10 years the only thing I take is a very small dose of Xanax. I have been living with this naturally. BUT EVERYONE IS DIFFERENT! What might work for one might not work for someone else. You were very smart in not getting "freaky" about it. That would have made you feel worse. From what I experienced a high heart rate is extremely common with Dysautonomia. My resting heart rate us usually 90-100. I find that the more exercise I do the better I feel, but I only exercise on the days I feel good and have energy to burn. The more you move the better you will feel. If I may give you some advise, first and formost, discuss everything you feel with your doctor. Make sure you have a doctor that is very attentive to you and isn't afraid to do tests. With this very complex sydrome it is vitally important to have an open and forward relationship with your doctor. Again, if you don't mind the advise, whenever you feel your heart rate speed up like that, SIT Down. If you can, put your feet up. Learn to do diaphagramic or deep slow breathing. Other than medications, this will help to slow down your heart rate. I can't stress enough for people with dysautonomia to DRINK DRINK DRINK. I hope it is comforting for you to know that you are not alone. There are many people that are living with dysautonomia and don't even know it. Hang in there!!! Educating yourself is the best thing you can do!! Take care and I hope to see you here again soon. KathyP

Hi Radha; What MotherEarth said was awesome, "if I am unable to do anything more than lie in bed (during those really bad POTS spells) and fill my mind with compassion and love for myself and every sentient being... that I am doing something worthwhile for all those around me." There is no person on this earth that is worthless. I believe that you have to love yourself and take care of yourself before you can love and take care of others. It is not being selfish!! Feeling guilty is very easy to do when we can't do the same things we did before we knew we had POTS. And just by you saying how much you want to do only proves that you ARE a very caring person that likes to keep busy. I've been where you are! I went an entire month of not getting off the couch. I went days wearing the same pajamas. I felt guilty because I couldn't do anything for my family. Then I set goals for myself. It took alot of baby steps and I even had failures but I kept striving toward my goal. I got up and walked around the house as much as I could no matter how tired and fatigued I was. Then I went outside and walked around my yard (I did change my clothes at this point!) The more I did the more energy I had. When I felt better than I did the day before I started looking for other things to do. I admit I have set-backs and the spells keep me down some days. But, that's OK. You have every right to allow yourself to have set-backs. Getting online and the phone are great suggestions. But excerise is extremely important no matter how minimal it is. Hang in there. Don't lose your faith in yourself!! KathyP

Hi Briarrose; I share your frustration about doctors who don't understand!! I have been to quite a few of those myself. I'm glad you shared it here. That's what I log on here for, to get ideas and share my frustrations about this syndrome. I appreciate the great idea of contacting senators and congressman, BUT, since this is a condition that is not life threatening I am willing to bet it would fall on deaf ears. I think the only way POTS/Dysautonomia will get the attention it deserves is if a celebrity or famous person was afflicted with it. What needs to be done is to throw POTS/Dysautonomia into the media. Have it as a medical condition on a TV series, then people would want to know what it is, even doctors. I know alot of people that refuse to watch TV. But there are alot more out there that have it on continuously. The media has a way of forcing everyone to feel the pain and suffering that others go through whether they want to or not. Why not use it for the greater good?!?!? I haven't used IVs for fluid loading (I've never heard of it either). I don't use sport drinks either because of the high sugar and/or caffeine content. I drink lots and lots of water, and also take multi-vitamins so I don't wash away all the good stuff in my system. Oh, and I increased my salt. I pray for all of you here at this site. It's a very long road but it's easier to walk down when you are not alone. KathyP

Hi Amy; There have been some great suggestions here!!! If you do feel you have a candida problem the safest natural way I found to totally get rid of it is with Oil of Oregano, or Oreganol P73 (this is the purest). You can find it at a health and nutrition store. You have to take it under you tongue because it is very bitter but it does the trick. I had problems with candida. So I got Oil of Oregano and took 5-6 drops under the tongue, with a full glass of water, at night for roughly 1 month. There are NO side effects and it WILL NOT affect your POTS. Some anti-fungals can be very hard on the system. I would also recommend the acidophilius that the others here talked about. You might want to try these since there are no side effects and you won't have to take a perscription if it isn't necessary. I have experienced, with my dysautonomia, that Insulin Resistence can be a problem. My body craves extra sugar to give it a boost when I feel dizzy or fatigued but then I crash and feel worse. When I cut back on sugar my symptoms like fatigue eased up considerably. I was so hooked on sugar I felt like I couldn't go one day without it. I replaced all my sugar snacks with poteins such as salty peanuts (gotta have that salt!), peanut butter crackers, cheese (all kinds), vegetable sticks, fruits (and more fruits). Sure I have sweets once in a while, but I really pay for it if I over do. The one thing that motivates me is deciding if I want the sugar or do I want to become diabetic!!! Hang in there!!! It won't happen over night!! You'll find something that works for you! Kathy

Hi kare; With 4 kids, working and dealing with POTS, YOU GO GIRL!! It is understandable that you would be so tired and fatigued. My first post, when I found this site, asked the question about menopause and dysautonomia. I am in my late 30's, had a hysterectomy and have POTs. I have 2 kids, 12 and 6. I sometimes have a very hard time keeping up and I don't work. I don't know what your age is, but I do know that when estrogen levels go down so does the serotonin level. This throws your system way out of balance and can make you very tired and fatigued. If you have health insurance, you may want your doctor to run a hormone level test. If you are pre-menopausal or menopausal this might help. Estrogen hormone replacement, at a very low dose might be helpful and is less expensive. I looked into some of the great advice I found here, tried some different things and I am feeling much better. I agree with Rita, lots of water, extra salt and compression hose help greatly. Hang in there! KathyP

Hi EarthMother; That was a great explanation. It really put palpitations into perspective. I get them all the time. Thanks for sharing!!!!

THANK YOU to all of you with such great advise!! I am going to look into as much as I can. I do take a magnesium supplement, but in pill form and it just doesn't seem to be hitting the spot. I am getting a good feeling from it though, just feel I need more. I will look into the Natural Calm and the Standard Process. I haven't talked with my doctor, yet, about the beta blockers. The calcium channel blockers are a question for him too. Right now my asthma is controled with Advair. I had 3 doctors tell me that beta blockers are out of the question right now. But I have heard that a very small dose might be OK. Thanks again! I will be checking in again real soon. KathyP

Hi Linda; Mary from OH is right, you will be exhausted afterwards. But, you feel that way no matter what you do anyway. I can't speak for anyone else's TTT. Yes, I was exhausted for a couple of days afterwards, but finding out what was wrong with me was worth it. That's the most important step, understand what you have and then begin the right treatment. During my TTT the doctor was there the entire time, along with 2 nurses. They talked to me in a calming manner when they noticed changes in my readings. I didn't even have to say a word. It was like they were telling me what I was feeling. It was nice to have this because it was the first time that people could actually see what was happening to me. And when they were finished the doctor called my husband in and talked to both of us about everything he found. He then gave us treatment options. I also know that I am not crazy, neither is anyone else with this condition. The general public doesn't realize that this is a syndrome that we suffer from on the inside because there are no outside visual signs. Panic attacks are certainly a private **** that many people have a very hard time understanding. Look forward to your test with happy excitement instead of fearful anxiety. THINK POSITIVE!!!! You will be fine! KathyP

Hi Linda; WOW, you sound like me. And I am sure you sound like alot of other people with dysautonomia. I am in Ohio also. I had my tilt table test done in Toledo. There is nothing to be worried about. You simply lie on the table with a foot rest, that you will stand up-right on. You will be secured and there will be a few people there with you. And believe me, they know exactly what they are doing and they have seen everything that could possibly happen. It is not painful at all. When I had my tilt table test I stood in the upright position for 20 minutes without moving a muscle. Then the cardiologist gave me nitroglycerin (a very small dose) to speed up my heart rate, then monitored me another 20 minutes. The doctor took my BP and pulse every minute. I was also hooked up to monitors. So they knew everything that was happening to me. I was very nervous before I had the tilt table done. But I would have no problem doing it again because it gave me an answer I was looking for for many years. My father has neurocardiogenic syncope (he faints) and has a tilt table test every year. It is nothing for him. My cardiologist also told me that I was born with this syndrome. It gets worse with stress, infections, and trauma. He also told me that it won't kill me (it just feels like it will), but I really do have to take care of myself. I have vasovagal depressor syndrome, MVP syndrome and POTS. As for you wanting to stay home, sounds like you are agoraphobic. I am that way too. I just recently became that way in the last 4 months. It feels better for me to stay home then go through all of the anxiety and discomfort of going anywhere. The only way that I can explain it is that I don't think I am scared to go out. I get so much stimuli with driving, shopping or just visiting that I feel like my nerves are on overload and it whipes me out. I recently quit the best job I ever had. I worked at a greenhouse. I loved planting for spring. Three weeks ago I tried to go to work. When I work there I get alot of exercise and am very busy. I only worked 2 hours, couldn't take anymore, went home and slept for 4 hours. I called my wonderful boss and told her that I couldn't work anymore. I cried for 2 days. Sorry, I am rambling on and on. I hope this isn't too long for you! Hang in there!! You will feel better getting that test done because then you can start treating you symptoms. KathyP

Hi Linda; I agree with the others that you need to consult your doctor. As for experiences with this happening, 10 years ago my anxiety attacks started. The doctor I was seeing back then put me on Zoloft. I was on it for several months which was plenty of time for my body to get used to the new drug. But, the longer I was on it the worse my anxiety attacks got. He tried me on a few different SSRIs that just didn't work, such as Buspar, Celexa, and Paxil. I also gained lots of weight. But as they say, "Everyone is different!" The one thing I have learned about dysautonomia is you never stay the same. What might be working great for you for one year might make you feel completely aweful the next. Hang in there!!! KathyP

Thanks Tearose; I am taking all of the advice I can get here. And thank you for the kind words. I have a feeling I will be spending alot of time at this sight. Thanks to everyone for some really great advice. KathyP

Hi Everyone; I am new here and I am very glad to see that I am not the only one on earth that is afflicted with such a debilitating syndrome. I have 2 sisters, who are nurses, that tell me that it is all in my head. But, I found a cardiologist who diagnosed me with POTS and my regular physician who diagnosed me with Mitral Valve Prolapse Syndrome/Dysautonomia. My sisters tell me that the doctors don't know what they are talking about because they, as nurses, have never heard of these syndromes. Well, needless to say, I don't think I will look to my sisters for advise anymore. I am glad you are here for me to vent and get some great ideas to discuss with my doctor. I am greatful to have a doctor that is honest enough to tell me that I know more about this syndrome than he does but he is willing to help me. Anyway, the issue I am trying to solve is POTS (dysautonomia) and menopause. I had a hysterectomy 2 1/2 years ago. I am 39. I am constantly fatigued, my heart rate is constantly high, not to mention anxiety attacks one right after the other. I am also agoraphobic. I have so many symptoms I don't know what is caused by what. I am planning to go to a pharmacist, with the direction of my gyn dr. to have my blood analyzed for a compounded supplement meant only for my needs. I am hoping this will help. I am currently taking Xanax to help me fall asleep. I am on a very low dose of estrogen. This is all that I am taking because my dr. doesn't want me to take beta-blockers because I have asthma. I am hoping that some of you may have experienced POTS or dysautonomia with menopause. I heard that estrogen levels effect serotonin levels which effect anxiety. I can't tolerate SSRI's. Any good suggestions would be greatly appreciated!! Thanks for listening!! God bless all of you!! I know that we are all in the same boat and pray for our rescue!!! KathyP