KathyP

Hi Finette; I have been practicing deep, relaxation breathing for the past 6 months and I will say that it has helped tremendously. It truly helps calm the inside. I highly recomend it. KathyP

Hi Dawn; I love the show HOUSE. It is extremely interesting. I would love to see them do an episode on POTS. That is the boost we need. I was shocked to hear Hugh Laurie speak in a British accent. Now I notice that he speaks in a low, deep, mono-tone voice on the show, but does a good job. Anyway, the show seem to do not well known illnesses so maybe they would do one on POTS. KathyP p.s. I really don't mind the gory stuff.

Hi Everyone; I have read every response to this topic, so I felt I had to add my 2 cents. I don't know if you are only speaking of POTS or Dysautonomia in general. I have Inappropriate Sinus Tachycardia. I can NOT stand for more that 20 minutes. So needless to say, standing in line is out of the question for me as well as being on my feet for long periods of time. My cardiologist told me that IST with vasovagal depressor syndrome (which I also have) does cause postural othostatic intolerance. The reason I am responding here is because I AM overweight. I am 5' 2" and weigh 185 lbs. I eat right, 3 - 4 very small healthy meals per day. I exercise and get plenty of sleep. I just can't lose the weight. I have tried everything. I drink lots of water because I do have low blood volume. I have researched dysautonomia extensively and have not read anything about weight being an issue with dysautonomia. I have consulted with both my Internist and Cardiologist about my weight being a factor. Both have told me that my weight does not have anything to do with my syndrome, bad or good. I have had all tests done to check for thyroid dysfunction, adrenal dysfunction and had all of my reproductive hormone levels straightened out. Since my dysautonomia crash, last December till now I haven't lost nor gained a pound. I have always been a very solid person, but with a very low blood volume. But the more balanced my hormones and the more I exercise the better I feel and the less my symptoms. I hope this sheds some light on attributing weight to dysautonomia or POTS. This is one great example to prove that we are all different and Dysautonomia effects each of us differently. Take care! KathyP

Hi Jeff; Since the moment I was diagnosed with dysautonomia I have done extensive research on everything from it's origin, to what causes it and up to date treatments and medication. There are so many aspects of dysautonomia from symptoms to treatments. Since we are all so different in terms of what works and what doesn't, and the different symptoms, it is difficult to get an exact time line on the origin. My guess would be that this may be the reason why doctors have such a hard time understanding the syndrome and developing a plan for treatment. If someone were to ask me to explain dysautonomia in one sentence it would be, "It is a short circuit (bad connection) hidden somewhere in the electrical (autonomic nervous) system, in our body, that is extremely difficult to find." As for my specific type of dysautonomia, which is MVP (Mitral Valve Prolapse)/Dysautonomia, I felt there were some interesting conditions diagnosed several years ago that fit well with my experiences. I have read about it back to the civil war periods when they called it "Soldier's Heart". This is where the soldiers developed a condition of over fatigue, racing heart and instances of anxiety attacks. This was caused by battle fatigue and post traumatic stress. When the men were diagnosed with this they were discharged from service and rendered disabled. Leading a quiet life helped some and others were bed ridden. I don't know if you watch old movies but there is a referance to some people getting so over stimulated or so stressed out that they would faint. Doctors called this "the vapors". This would happen to some and not to others. In the documents I have read, they stated that this could have been connected to some form of dysautonomia. There was no treatment for this. Just smelling salts and rest. With the way society is today and the "hurry up" lifestyle it is no wonder how stress is becoming a huge factor in our physical well being. I think that it is all in the way that everyone is uniquely "wired". Some have it some don't. Some were born with it or some have stressed and worn themselves to it. As for myself, my Dad has NeuroCardiogenic Syncope. So I was, more than likely, predisposed for dysautonomia since birth. I also tend to spread myself very thin and have more stress than I can handle. This exacerbates my symptoms. I have found that, for myself, the origins really don't help me with my treatment today. But it sure is interesting to know! It is also comforting to know that what I have won't kill me. There are so many options that I have discussed with my doctor. A few have worked well. What is most important is to concentrate on the positives. I hope this helps with your own personal research. Take care. KathyP

Hi Chad; First of all, I found it very ironic that you have POTS and you are in a band with the name of H2O!! Sorry, that just struck a chuckle in me. Congrats on your record deal and CD release. I hope it is very successful for you. Also, thanks for the info. I have not tried the medication Mestinon that some have mentioned here. But, I am glad to hear that there are doctors looking for a medicine that will hopefully work. You said that they are DEVELOPING a pill, so they must still be working on it. That is incredibly positive. I am sure there are many many people here that may not have tried Mestinon or any other drugs geared towards POTS and dysautonomia and will take this information to their physicians. Again, thanks for the ray of hope. And thanks for having the ability to have a converstation with the best in the field of POTS and then sharing it with us. Having an influencial voice, to get the word out, is extremely important to educate doctors about Dysautonomia and POTS. I will be looking for your CD. Take care. KathyP

Hi Melissa; I just thought I would send my own words of support and encouragement your way!! I have some idea of what you are going through. I had to pull back and slow down with some things I wanted to accomplish in my life. It was very difficult and I felt like such a failure. But, farther down my path I realized that there was something else I was meant to do. I couldn't see it at first because I wanted to do as much as I could to reach my goal. But as soon as the dust of my disappointment cleared I new I made the right decision. I may not have reached my goal when I wanted to but I never lost my passion. Your passion is something that no person or disability can take away from you. Everything that I read about what you were trying to accomplished really amazed and impressed me. You were doing and taking on more than an average healthy person would want to do. What's the saying, "ROME WASN'T BUILT IN A DAY!" After you slow down, and rest you will be able decided how to approach your goal from a different angle. You with get there! Peace! KathyP

Dear Morgan; First of all let me say, I am glad that you are home!! OMG, the ordeal you went through was unexcusable! I have worked in the medical field for several years and have never heard of such horrible treatment. Talk about a BREACH OF ETHICS! To me it sounds like several ethical codes have been broken. What was that place you were at, a band-aid station? I wish there is something I can do for you. You have my best wishes. KathyP

Hi Jennifer; There is very valuable information right here at this site in terms of where to start your search. From what I understand, depending on where you live depends on the availability of physicians that are knowledgable and available. As for my experience, I have only seen Internal Medicine Specialists, (or Interists) as my primary care physicians. Most insurance accept them as PCP and they are MDs. They are specialists because they are more detailed to the functioning of the body. My PCP refered me to a cardiologist to do the the tilt table test and to rule out heart abnormalities. After my formal diagnosis I just see my Internist and he helps me adjust my meds and runs other blood tests that are needed. You might want to ask your gynocologist (if you have a regular one) if they can suggest someone. If you have insurance, inquire into their physician listing. I hope this helps. Take care! KathyP

Hi Dayna; I know several people that had gallbladder surgery this year. I, myself, haven't had gallbladder problems. I have had surgeries with having dysautonomia and did fine. These days there are less invasive technics that they are using. I've heard that the most common is laproscopically (sorry if misspelled!), through little incisions. Everyone I know, who has had their gallbladder taken out was back to work within a week. I also agree with Corina and Katherine. If your doctor says you need it out have it taken out. I wouldn't doubt it if you felt better after having it done. Good Luck and keep us informed. Take care! KathyP

Hi Terry; I am glad that the florinef had some possitive results with a bp going from 70/50 to 114/64. I'm sorry, I have not had any experiences of a raised bp nor have I been on florinef. But, has Dr. Khurana explained why this happened? My guess would be if it were extremely rare and dangerous the doctor would have done something right then and there or not let her go home. The doctor should have explained why this happened. Stay hopeful and positive! It sounds like you are on the right track. Take care! KathyP

Oh Melly; Thank you for your kind words!! Exercise is very important. It is so easy to fall into a POTS hole and not get the movement we need. I wish I could give you some of my access weight, but I wouldn't have enough for me. I am not severely overweight. But I would love to give you my extra 30 pounds if you need it!! I can not say that I am under any stress but I can say that I have an anxiety disorder that ties in with my dysautonomia. This anxiety has nothing to do with weight gain or loss. Hormones are usually the cause of weight fluctuations. I will have to check with my doctor about this since he was the one that explained this to me. I could see where hyperthyroid can cause weight loss because of the influx of catecholamines and the thyroid hormone. Anyway, everyone is different. What hurts one is best for another. We just need to find our own individual healing. Take care!! KathyP

Hi Chad; I am glad to hear that you got a clean bill of health from your doctor!! That is very good news. Now you can look for ways to strengthen yourself to feel better, such as dietary changes, exercise and increasing fluid intake. Increased gas can be caused by many things like being nervous or what you eat. I know from my own experiences that my dysautonomia causes me to have bouts of excess gas. No matter what, physical exercise is extremely important no matter how much or how little you do. Just start moving a little more every day even if you have to push yourself. The more you move the better you will feel. The better you feel the hungrier you will be. Think positive!!! I am sorry not to agree with Melly's statement that dysautonomia combined with anxiety is the cause for weight loss. I have had both for over 10 years and I am overweight and have an extremely hard time losing it. I wish it were true. I have been trying to lose weight for some time. Please, don't stop searching for what is best for you. Now that your doctor knows that you don't have anything life threatening you can begin to find things that make you feel better and stronger. Don't give up hope. There are many options out there. You can do it!! I was once bed ridden and now I fought my way back to going shopping, doing things with my friends and family, and most of all ENJOYING LIFE!!! Take care! KathyP

Hi Everyone; I know I haven't been visiting this forum like I used. I have found ways to feel better and have been more active, but I do return from time to time to see if there is anything new in the way of Dysautonomia treatments or if anyone has tried something new that truly works. I am also fortunate to have a physician who is very supportive. I have been reading several recent forum threads. With all due respect and not wanting to offended anyone, I thought I would write this to those of you who may feel extremely discouraged after seeing a doctor who may NOT be sensitive or know all about Dysautonomia or POTS. I am sorry to be so harsh in saying this, but there has been alot of doctor bashing within some of the threads in this forum. Doctor's names, of course, have not been mentioned, but the negative feel towards the medical profession is very obvious. So I felt that I had to write to say that when a "new comer" signs into the forum for information to their newly diagnosed dysautonomia, they desperately need to see POSITIVE information to help them deal with their symptoms. When they read disdainful comments about physicians who are not well informed about dysautonomia it could make them feel discouraged and hopeless in finding their own physician and treatment. And by no means should people newly diagnosed with dysautonomia self treat themselves without the guidance of a physician. I, myself, have experienced doctors that were so insensitive that I wanted to scream. I had bad experiences in the ER as well as with doctors I wanted as my primary care physician. They didn't have much information about dysautonomia and only wanted to treat the symptoms and not get to the core of the problem. After faithful searching and some suggestions from some great people at this site, I put all my resources together and found the help I needed. For those of you who are looking for a doctor or those having a hard time finding one who is familiar with Dysautonomia and POTS, please don't be discouraged. There are doctors out there knowledgable about this syndrome. If I were looking for a knowledgable doctor I would pool some resourches. These resourches would include going to the home page of this dinet web site (at the top of this page). There is a listing of doctors, throughout the US and the world, who are very familiar with Dysautonomia and POTS. Then there is the option of calling the State Medical Association, in the state you live in, and ask for a list of doctors that specialize in the Autonomic Nervous System and its dysfunctions. There are also "Physician Referral Services" at area hospitals. If you do find a doctor that specializes in Dysautonomia and POTS, but is not taking new patients then ask if they can suggest another physician who is seeing new patients and is familiar with this syndrome. There are also successful experiences with certain doctors in forum threads here. I am not saying that every doctor is great or that anyone is wrong for venting their bad experiences. By all means people looking to the forum for information should be made aware that there are doctors that treat patients with Dysautonomia in a negative manner. But they should also be encouraged not to give up hope in finding one that works well for them. Dysautonomia has many factors and many different symptoms. Each of us diagnosed with it are extremely unique. What works for one may not work for another. One doctor may work miracles for one patient and be extremely disliked by another. I hope I haven't offended anyone. If I did I whole heartedly apologize. Dysautonomia is not a well know syndrome throughout the medical community. I come to this forum, as I am sure others do too, to find helpful information to help me feel better and to, most of all, learn to cope with my affliction of Dysautonomia. I also feel that any new information that I have can be shared with others to help with their healing. Dwelling on the negative only adds undue stress and anxiety. The most positive thing we can do is to share our good experiences that work with others who are looking for more options. GOOD LUCK TO ALL OF YOU ON YOUR HEALING JOURNEY!!! KathyP

Hi again Patti; I am sorry if I offend anyone, but I would not recommend self diagnosis!!! I have a hard time believing that a saliva test is more accurate than a blood test because the concentrations would be more accurate in the blood stream. After all, the blood stream is how the hormones travel throughout the body to begin with. With saliva testing there can be various things that can change the balance of what is in the saliva such as low fluid volume (which is common in people with dysautonomia) and bacteria. I do not prefer saliva testing for hormone levels because the results are not as accurate as the blood test. Saliva tests for this are popular because they are cheaper to perform and you don't need a lab tech to collect your specimen. It would be like saying that a home prenancy test is more accurate than a blood serum pregnancy test. The statement is just not accurate and dangerous to rely on. Since Dysautonomia is new to certain doctors is it a good idea to learn as much as you can about your syndrome to find ways to alleviate certain symptoms. Self diagnosis just adds more stress and worrying about things you might not even have problems with. Educating yourself is very important, but remember the doctor you are seeing has had 8 years or more of medical school. Hormonal testing is covered under insurance if ordered by a doctor. Ask your insurance company if they cover it. Most doctors are familiar with this testing since they have known about these hormones for a long time. After your test results are read by your doctor he then forwards your replacement needs to a licenced pharmacist that makes a compound designed just for you (your insurance may pay for part of this also.) You may find your nearest compounding pharmacist in your local telephone book under pharmacies. The most sound advice I can give to you is to talk to your doctor about it. They may prefer one test over the other and they know how to accurately read the results. And heh, your doctor may prefer the saliva test, but that is their call. And also remember not everyone has the same needs. Every body is different. Best of luck!! I hope you find the answers you need. KathyP

Hi Patti; I wrote a few threads about 4 months ago in regards to hormonal testing and it's effect on dysautonomia. I went to a hormonal compounding pharmacist. He explained to me that all of the hormones, in our body, have profound effects on eachother especially if they are not in balance. My doctor wrote an order to have my blood drawn and ALL of my hormone levels examined. The hormones include; all reproductive hormones such as estrogen, testosterone, estrace, etc.; thyroid, insulin, cortisol, adrenal and the receptor levels of the pituitary gland that stimulates those glands to produce the hormones. As it turned out, since I had a hysterectomy, my reproductive hormones seriously needed to be replaced. The lack of these hormones effected the rest of my insulin, thyroid, cortisol and adrenal hormone levels because they all somehow work off eachother. But now that I have the hormone replacement I need I have been feeling so much better. I have more energy and my dysautonomia symptoms have not been so pronounced. I am feel more and more like myself again. I highly recommend talking to your doctor about this. This may not correct everything but you might find that getting everything in balance may help considerably with the symptoms of dyautonomia. Good Luck, KathyP

Hi Morgan; You are so right!!! Dysautonomia is such an unknown disorder that most doctors are still learning about it. Most times they don't know what else to do but ask the psychology questions. When my doctor, whom I have a great deal of respect for, started figuring out my dysautonomia symptoms he asked a few psyc questions. I know he wasn't questioning my sanity. He was looking at all possible causes to make a correct diagnosis. But, there are unenlightened doctors out there who would just label it as a psychological problem and be done with it. Those looking for doctors must be knowledgable enough about dysautonomia themselves to know if a doctor is sensitive to it or not. Right now, in this day and age, Dysautonomia is a learning experience for both doctors and patients. So, "It does go with the territory"! You hit that one right on the head. This is why, as I stated before, educating yourself is the key to finding the right doctor and the best treatment for yourself. Best wishes, KathyP

Hi Melly; My understanding is that anxiety and/or panic disorder is an effect on the body caused by dysautonomia. A symptom, if you will. Dysautonomia is multiple symptomatic. People diagnosed with irritable bowel syndrome could very well have dysautonomia also. Where you diagnosed by a physician with having dysautonomia? I apologize if you stated this in another thread and I missed it. I suffered with anxiety for several years before being diagnosed with dysautonomia. I still have an anxiety/panic disorder but it is due to the dysautonomia. I have come to the realization that my anxiety disorder was properly diagnosed, but I needed to know "why?" I had it. Most often doctors stop at the anxiety diagnosis, call it a disorder and treat the discomfort of it. Other doctors, who know about dysautonomia, look further past the anxiety disorder and find the underlying reason, which is usually dysautonomia. Anxiety and unexplained panic is the bodies way of telling us that something is wrong. It is the flight or fight kicking in to alert us that there is a problem. This is controled by the autonomic nervous system. A mis-firing or inappropriate reponse of the nervous system, such as unexplained anxiety, is a dysfunction of the autonomic nervous system, hence dysautonomia. You are right, dysautonomia is a not a well known syndrome. The best I can suggest is to keep looking for a good doctor that you feel comfortable with and who knows about dysautonomia. You need to find what works best for you. I have tried so many different remedies. Yoga and deep relaxation has worked wonders for me. I can't stress enough the importance of educating yourself as much as you can about dysautonomia and spreading the word. It is most important to find a knowledgable doctor with whom you can be open with. I hope this helps. Take care, KathyP

Hi SallyAnn; I agree with Morgan. You know what you can handle. I have missed several funerals and weddings for family members. What makes it worse for me is that they don't understand and my 2 older sisters are nurses. One is a cardiology nurse to boot. I feel there was nothing wrong with you deciding not to go because of your medical condition in the morning. You did the right thing by calling the family of the deceased and giving them your condolences. You don't OWE anyone an explanation. If they can not accept your decision then that is their tuff luck. Hang in there. This too will pass and before you know it, if you have family like mine, they will find something else to nit-pick you about. Take care, KathyP

Dearest Tearose; You are truly an inspiration!! Congratulations on your fight back to normalcy! I am so glad to hear your news. Don't worry about some doctors not seeing what your internist did. Sometimes the answers are so simple they are right in front of our nose and we can't see them. We all know that some doctors, who specialize, are so technical that they can't see what is simply obvious. Think of it this way, if you didn't go through what you did to get to this point it would not be so celebrated and appreciated. You have been through an extremely challenging obstacle course and can now see the finish line. YOUR DOING IT!! Allot of people couldn't go through what you have been through. Keep up the great work and please know that we are here for you cheering you on. Keep positive and don't stop smiling. You will make it. Cheers! KathyP

I agree with Gena. I have MVP with Dysautonomia. I have learned that the severity of dehydration has alot to do with the affect of MVP. To my understanding, when the body is dehydrated the heart is slightly smaller but the valves stay the same size affecting their work. When the body is well hydrated the valves work more efficiently. So it may be possible that you were well hydrated during your test. I feel that this is why it is so important to keep hydrated at all times so you can be less symtomatic. You should ask your doctor about this. Take care, KathyP

Hi EM; It is great to see you on the boards. I am happy to hear you are doing more, I just wish that you would feel even been. I myself have been doing so much more lately, so I haven't been on here as much either. Your info is very enlightening. I do agree with it 100%. Most of our illness depends mostly on acceptance and dealing with it. I will look up more about it. I have recently decided to see a psychologist to help me with my coping. What a wonderful help she has been. She herself has told me that the it is all about learning to accept and cope. Through her I have also learned that negative thinking (such as being down on yourself and thinking about bad things that can happen) can bring on more adrenaline output that puts the negative effects on your body. Keeping upbeat, thinking positive and looking forward to the good, instead of the bad, helps to produce endorphines into the system. Endorphines make you feel better, give you positive energy and reduce the production of adrenaline. I have been working on this and I must say it has helped. I am continuing the hormone replacement that my body desperately needed. It has made a tremendous difference. I am doing much more and feeling much better as well. So, I think you are right about it not being "all in your head". Our systems are very sensitive to changes that could knock our nervous systems out of balance. We have to accept that and do what we can to find a way to live with it. Time does heal. Thanks for sharing your information. Again, I hope you feel even better soon. Take care, KathyP

Hi Sophia; I am Power of Attorney for my Cousin who lost her husband last year. I helped her move into a nursing facility. She has no children. She left me in charge of all the legalities. I guess I have to ask you if you are her Power of Attoney? Does she have a Health Care Power of Attorney? If she is the least bit confused or disoriented she won't be able to legally appoint anyone as a Power of Attorney. This is most likely why they are advising you to get an emergency temporary guardianship for her. With her having Alzheimer's odds are that someone is going to have to get guardianship or a Health Care POA no matter what. With Medicaid, I have experienced that when it comes to long term health care and facilities, the State of Ohio helps when the patient owns nothing. Either selling the house or putting it in someone elses name seems to be the only choices. Whether anyone has guardianship or POA over her or not will not make her cooperate and take the meds she needs. Whether your Mom is being nice about it or not she still needs her meds as well as proper medical attention. If I were in your position I would find an Attorney who specializes in Family Law or Long Term Medical Planning for advise. I would also find ways of getting her to take her meds. Contact the Area Office on Aging. They might be able to offer some great ideas. I feel for you. Hang in there. Things will get better. KathyP

Hi Purplefocus; I know exactly how you are feeling. With dysautonomia, depression can bring me down even farther during emotional times. My Mom passed away 31 years ago and that anniversary was on July 20th. It is still a very hard day for me. Right now I am the same age she was when she died so I have so many fears with health issues along with the sadness of still missing her. When I get feeling down about not having my Mom around I try to remember the things that she did with me and do those same things with my own children. In the short time I was with her I didn't get to know alot about her. So I have to go with what I have been told or what little memories I have. Please remember that the things you need to do are important. You need to live the way she would have wanted you to live. As long as you are living happily she is living on as well, through you. With as much as you miss her, I am sure she was a great Mom. I am willing to bet that she would be proud of your struggles and accomplishments. You asked, "who am I benefitting?" and "what is the purpose?" Well, the way I see it, you getting up everyday, doing your best and giving it your all, benefits not only you but her love and purpose for you. It is OK to feel the way that you do. It is a very hard loss. I wish you well and please know that you are not alone!! Take care, KathyP

Hi Swankster; WELCOME!! You said that you have had Dysautonomia for 23 years. Are you seeing a physician, who is very knowledgable with dysautonomia, on a regular basis? If so maybe you might want to insist that your husband go with you to your doctor appointments, or at least one, so he can hear what you go through from the doctor. When my symptoms hit me hard, 6 months ago, my husband had to drive me to my doctor appointments. He learn what was going on through the doctor. But my husband has never doubted me when I have told him I wasn't feeling well in the past. I take care of him, he takes care of me. About 9 years ago I had a very hard decision to quit a stressful full-time job and stay home. Since then I have worked at other jobs, part-time, that are not so stressful. Hang in there!! Life has a funny way of working itself out. Your health is most important!! You need to do want is best for you. KathyP

BEST WISHES AND PEACEFUL THOUGHTS TO ALL OF YOU ACROSS THE POND!!!! With such evil and hatred of attacks like this happening in the world it is no wonder that people have problems with their nervous systems!! Peace to all! KathyP