KathyP

Being of age 42 and with you still having your ovaries, it may be unlikely that a hormone replacement would be considered. Most women are close, or in to peri-menopause at this age. I had a complete hyst, in my 30's. I am currently on hormone replacement, but am weaning off, very slowly, so my body can be somewhat normal to the natural course of menopause. When it is time to lower my dose, I experience retinal migraines. Before my hysterectomy my hormone levels were all over the place. When there was a surge, I would be highly symptomatic, when there was not enough, I would be very symptomatic. So it seemed to be a delicate balancing act. But, there came a point when problems became so severe I had the surgery. It is wise to have your hormone levels tests first before doing any kind of replacement. Your doctor would know best. There are alternatives besides the generic hormone replacements out there. This is where the advice of a gynocologist would be helpful. Endocrinologists deal more with this issue as well.

Hi Ernie! My father has NCS, do to a very low blood volume. He was recently diagnosed with Myelo-dysplastic Syndrome, which is a disease where the red bone marrow can't produce mature blood cells to sustain a healthy blood volume. While he was very symptomatic with the Neuro-Cardiogenic Syncope, he had to increase his salt. Then he went into congestive heart failure. Now it is a very sensitive balancing act to keep him on an even keel. The reason I was asking about the number of men here is because I haven't seen many at this site. There is predominently women here. Also, in my studies, I have found that woman have more issues with the hormone factor do to menopause. Dysautonomia runs in my family, with the guys as well as the girls. But, the girls are much more sensitive to symptoms.

Getting your homones back into balance takes time. Be patient! Mine took many years. The condition I was diagnosed with was Polycystic Ovarian Syndrome, which required a hysterectomy. That is what started the hormone imbalance. From there that imbalance of ALL reproductive hormones led to my other endocrine hormones, such as adrenal, thyroid and parathyroid to be completely off. I had bio-identical hormonal replacement cream for all of these until my levels went back to normal, which when balanced, I had to wean from very slowly. While I was unbalanced hormonally I was extremely symptomatic for dysautonomia. My heart was going crazy. I had vasovagal depressor syndrome, orthostatic intolerance (I couldn't stand for more that 20 minutes without feeling faint.), PVCs, and severe anxiety. The blood test that I had proved that I had 0 level of any reprodutive hormones, of course. That made my endocrine system pump out more hormones to compensate. My thyroid was up and down like a yo-yo. My cortisol level was through the roof. Before I had my hysterectomy, I had very bad anxiety and heart palps. Learning to control that alone was a nightmare. That was all I was focused on. I didn't care what was causing the problem. I only cared about dealing with the symptoms. So, after many drugs to control the anxiety, I learn meditation and self hypnosis (no kidding). Then I decided to go back to school. I graduated with a Science degree as an anatomist in research. I can work with research, but in no way can I diagnose. But I do know what I have been dealing with and can only speak from my own experience. Each person here has an individual case which is completely different from others. You have to find what is happening with your own body. Sure you can come here for support. This site got me through some very low times. This site gave me the light of hope when I was first given the news from my doctor. I can't give names of doctors who specialize in Dysautonomia, there are hardly any. Look in the Taber's Medical Dictionary. You would be amazed at the definition of Dysautonomia. As for recommending a doctor, I can tell you that any MD who can run a test and know what is normal and what isn't normal can do a thorough exam. With everything I have learned, people with dysautonomia developed the syndrome because of a freak virus, heredity, Lyme disease or even through metal poisoning. I haven't seen many men with this. Are there alot of men at this sight? Menopausal woman can experience dysautonomic symptoms as well. The posibilities are endless. My main point of this is to stress, NEVER stop searching, never stop hoping. It is very easy for a doctor to say, "Well, all I can say is that you have POTS." And then they leave it at that. Then they get frustrated with the patient when the treatment they gave for the symptoms no longer works for them. Doctors stop there. They don't realize that there may be another reason. They need to take one step further. Our bodies are an amazing machine. This machine is meant to work like a symphony of music. Each instrument complementing the other. Without the drum, you have no rythm. And that will throw off all the other instruments. The Autonomic System has a sympathetic and parasympathetic region. Anxiety is sympathetic - heart rate, stomach problems, gerd, dry mouth (ready for fight).....it dilates the blood vessels which can drop the blood pressure. The parasympathetic controls the rest and digest area - tired, salivation, digestion (which affects the blood pressure), colon problems, and urination problems. Have you noticed your breathing? Are you breathing too fast, or hyperventilating? All this is connected through the nervous system. But these are all set off my something outside the body or inside the body. I am sorry for rambling, but I am only saying all of this to give you a different perspective and to share what I have learned. Look at your body as a whole working machine. Don't be afraid to consult your doctor. Peace!

Hello everyone!! I have been here for some time. I read mostly. I haven't posted in a very long time. Since my diagnosis with dysautonomia I have went back to school. I studied every aspect of the Autonomic Nervous System, the Cardio System and every other aspect of Anatomy and Physiology. This has taken me 3 years. I have pushed myself past my diagnosis in search of something else. What I, personally have found is that I was looking in the wrong place the entire time. I have found that my disorder was a precurser to something else. My "dysautonomia" was a sign of some other underlying condition. My hormone levels were so out of balance my body went into a state of panic, screaming at me with my symptoms. I am stressing, first and formost, that this is my own personal case and does NOT reflect the out come of any other suffer here. I pray for each of you who suffers with POTS or any other form of Dysautonomia. Dysautonomia is a dysfunction of the Autonomic Nervous system, or the fight or flight response after all, and an imbalance some where is causing this response to react. The one thing that I want to stress most of all is.......PLEASE PLEASE PLEASE, don't stop searching. Be insisting with your doctor. HE WORKS FOR YOU. Make him do the job your insurance or even you yourself pays for. If he doesn't, get another one. I was once so crippled with my symptoms that I couldn't leave the house. I found a doctor who listens to me and was willing to look farther than his own busy schedule. Now, I have graduated from school, I am starting a new business and can move forward, knowing that I have limitations that I listen to. You have the ability to grow past the your limitations. There is hope always. To start, demand a total and thorough examination. DO NOT only look at your symptoms. Your body is telling you something. If you have to have every blood test, there is, done then do it. Hormone levels, I can't stress enough the importance of checking all levels of reproductive, thyroid, adrenal, glucose and insulin, and even parathyroid hormones. Talk to your doctor!!! Ask about multivitamins. I understand that some may have such debilatating symptoms that just getting them under control is the main issue. But don't discredit the fact that POTS and dysautonomia may be a sign of another underlying condition or inbalance. I read many articles posted here that were written by doctors and they don't seem to ever know what they are dealing with. I say, stop looking at the symptoms, and deals with true signs by looking at the body as a whole, and not just cardio and nervous seperately. Please know that there is hope. KathyP

Hi Morgan and Jacquie; Thank you for your kind words. I totally agree with you Morgan. Everyone needs to be aware that there are labs out there that pray on people's needs to feel better. I did not go through any fly-by-night online or pharmacy offer for hormonal balancing. I talked with my Primary Care Physician who is an Internist about these tests. My Gynecologist, who I've seen for many years, ordered all the testing. I took his order slip for all the lab work to my regular lab where I have all my blood testing done. They then sent all the results to both my GYN and PCP. For me it was like any other blood test that I had done, they just took out a little more blood for all the testing. My insurance covered all the lab work like they usually do. Then my GYN wrote up the exact prescriptions I needed to get my hormone levels back to a normal range. I did not attend any seminars, nor did any woman/man, I never met before, tell me what I needed to feel better. Any doctor can order these tests. Checking all hormone levels is nothing new to doctors. This is something that should NEVER cost anyone $7000.00. I agree that there are pharmceutical companies that want people to believe that Bio-identical Hormone Balancing is something new. But it is not new. I feel, for me, it was worth discussing with my doctors and they were very open and honest with me. We worked as a team which is how it should be. People have to realize that the drug companies and doctors work for us, not vice-versa. If our doctors can't work with us we need to find a new one, and there are many out there that don't act like they are superior and know all. The same goes for pharmecutical companies. If the technology, testing and medications are out there I say take advantage of it and don't be afraid to talk openly with your doctor to tell him what you want. Doctors have nothing to lose by doing these tests. They just read the lab results and prescribe as needed. I, by no means, suggest that anyone do as I did. I posted threads, in this forum, to share ideas or to ask questions. I would never suggest anything outside of talking with your own physician to find what helps. I only meant to share my story to show that there is hope out there. We need to have hope and patience to find what works for each of us. Most importantly, we should never stop looking. Take care! KathyP

Hello All; I have not been back to this site for quite some time. I have been extremely busy getting back into a normal life. I was diagnosed with Dysautonomia in 2004. My cardiologist diagnosed me with Inappropriate Sinus Tachycardia, VasoVagal Depressor Syndrome and a severe Anxiety Disorder. I was so ill and agoraphobic I didn't leave my house for a year. I was so depressed and nothing I did seemed to help. I found a doctor who really listens. He gave me hope and wasn't afraid to ask other doctors their opinion. I kept my faith. I was bound and determined to beat this and/or to find a way to cope and move on. I have run into very difficult times, but those have getting fewer and fewer with each passing day. I had a hysterectomy in 2003 do to Polycystic Ovarian Syndrome that was so bad that I would be bed ridden during monthly cycles. This, I have come to learn, is a form of Dysautonomia as well. I suffered with this my entire life. It was also found that I have mitral valve prolapse/dysautonomia. I had a TTT and my cardiologist suggested a beta blocker, which my internist prescribed. A while back I wrote a thread, in this forum, describing a total bio-identical hormonal compounding I started. This included a total hormonal blood work-up which included testing my levels of all the hormones; all reproductive hormones; thyroid TSH and T3 and T4; insulin and blood sugar fasting; Cortisol; Adrenaline and Seratonin levels. I don't mean to be redundant in any way, but in my opinion as well as my physician's, MY case of Dysautonomia was contributed to my breakdown of inproper levels of my reproductive hormone levels. All hormone levels in the body work off of eachother. If one is out of balance for a long period of time the other hormones compensate for what is lacking. When all of the hormone levels become too out of balance and the body is working overtime this can cause a breakdown of the autonomic nervous system. My panic disorder started right after my first child was born and progressively got worse after my next child. This is suspected when it all started 14 years ago. After countless blood work and recently reviewing all testing from the beginning the pattern makes sense to me what was going on with my aspect of dysautonomia. I had insulin resistence caused by my polycystic ovaries. I had symptoms of Hypo-Thyroidism, my cortisol levels were very high, and the serotonin levels were completely out of balance. Through trial and error, as well as adjusting hormone levels medically, I am now down to only reproductive hormone replacement. I am no longer on glucofage or levothyroxine. I have been on a strict regiment of at least 7 - 8 hours of sleep each night, and religiously taking my beta blockers and HRT cream everyday. That is all the medication I am on now. I too, was told that symptoms were all in my head when I went into an emergency room. I, personally, decided that it might be a good idea to talk to a psychologist who helped me cope with alot of issues I didn't realize mattered. Now I am feeling better than I have in several years. The reason I am writing this thread is not to tell you to do the same things that I am doing. I am writing this to give hope that it is possible for everyone with dysautonomia to get relief and to feel better. It takes a great deal of faith, an understanding doctor, patience, and alot of trial and error. I have also learned to swallow my pride once in a while and admit I need to try something new. I am sure some of you may not have the possitive outcome that I have had, but no one knows what the future holds. Each one of us is different with different issues. I write this to all of you because I came here in the beginning of my diagnosis with a feeling of hopelessness and frustration. I thought I would never feel healthy or have energy ever again. Now I am seeing a light at the end of the tunnel and I know it is not an oncoming train. I still get symptomatic and run down once in a great while, but I can deal with it and it is not as bad as it was. If I was ever to give any advise to anyone here, without being offensive to anyone, it would be to never give up hope. Talk openly to your doctor. Research as much information as you can. Listen to your own body, it is giving you signals constantly. If you can afford medical testing and blood work insist on tests and researching every avenue. Talk to your parents and grandparents about their health history. It is my opinion that dysautonomia sometimes can be a hint to something deeper that can be simple to treat. Dysautonomia is not the end of your life or a prison sentence. I truly believe that it is an obstacle along our path in life. It will teach us more about ourselves as well as make our hope, faith and patience stronger. I hope I haven't offended anyone with this thread. I just wanted to share my success. I am not sure about the different forms of Dysautonomia such as POTS, irritable bowel, etc. I know that I may never be completely cured of dysautonomia but I do know that there is hope for better days. I do know that there is hope for everyone here. Take care! KathyP

Hi Radha; I am currently on hormonal compounding that a compounding pharmacist mixes up for me. During my initial visit with him we discussed nutritional dificiencies. For Iodine he told me to a way to not only test if my body needed iodine but a way to get it as well. Pharmacies sell over the counter bottles (little bottles) of iodine. He told me, at night before I go to bed, take the bottle dropper and apply one drop on to my belly. Rub it around to even it out into a circle the size not smaller than a dime and not larger than a quarter. When you wake up in the morning look at the circle. If it is completely gone that means your body needs the iodine. If there is coloring left there is not much of a dificiency. You sould talk to your doctor, or even a pharmacist, about this before trying this. Take care, KathyP

Hi Jacquie; I was recently in the hospital for severe right side abdominal pains. The doctors thought it was my gall bladder. They did a Abdominal CT Scan as well as an Abdominal Ultrasound. The reasoning for these tests were because my blood testing showed that my protein levels and bilirubin level was high. The doctors were worried that there was a problem with my liver. The test showed no abnomalities and my liver and gall bladder were normal size. After talking to my doctor about why my levels would be high and what they were looking for with my liver he told me some pretty interesting things. He told me that the liver is a very busy organ. It filters and processes everything the body takes in and also helps process excess hormones our body makes. It importantly processes all the medications you take orally. Another is the production of bile, which is made to break down food in the stomach. Receptors throughout the body send messages to the liver to do what it needs to do. With this all being said, the liver is really a very sensitive organ. It affects surrounding organs such as stomach, gall bladder, speen, pancreas, as well as adrenal glands. So with any malfunction the liver could be an affect or be affected by problems with these other organs. It is like a vicious circle. There can be many reasons why your liver is enlarged. It sounds like your doctor has a handle on it since he is doing regular testing. Is he also doing blood testing in conjunction with the CT scans and Ultrasounds? Sorry this may be a very vague explanation. Your liver may be enlarged by a bacterial infection, overworked because the body is very stressed, or it may be caused by one of the medications you are taking. Your doctor should have these answers with the testing he does. If it were extremely serious, you would be feeling it and would most likely be in a hospital right now. The most common outside sign of problems with your liver are a yellowing color of your skin or in the "pink areas" of the eyes. Keep an open communication with your doctor. I hope all is well with you and your testing. Take care. KathyP

Thanks Be Still; This is a very good thread!! I know many doctors that come to this site to learn more about dysautonomia. So you may have already enlightened a few. I agree with you. A doctor that asks that kind of question is way out of line. In my opinion it should be considered a breach of ethics with that kind of statement. Sorry, I haven't had the fortune of having a physician say anything like that to me. I am a very confrontational person and it is very obvious. I don't mind sharing my opinion with others, especially doctors. Remember, a doctor is not employed by your insurance company. They are employed by you. If a doctor, that is in charge of my care, looked at me and asked me "Why are you so sick?" or "Why do you have so many things wrong with you?" I would stand-up, grab my clothes and walk out of the room, dressed or not. If he questioned why I was leaving I would tell him (or her) that I am going to go ask the American Medical Association, as well as the State Medical Board if they can answer his question for me. There are other doctors out there that will help you find answers to your questions. My feeling is, if they want to be arogant in asking that question they should also be willing to ask you if you want fries with that. Sorry for being so forward, but I have seen too many people give up hope because some doctor told them that there was nothing wrong with them, or it was nothing because the doctor gave up looking. Don't give up hope or think all doctors are like this. There are many wonderful doctors out there that are really dedicated to caring for you. Take care! KathyP

Hi Sue; Just the fact that you want to change any aspect of your regiment is a big step when it comes to motivation. Hypnosis is one of many things I have tried after my doctor and I experimented with many medications. I asked him about hypnosis and the only thing he recommended for me, about it, was that if I felt that it would help me then do it. I have to tell you that hypnosis will work, but only if you are completely open to it. Hypnosis isn't anything magical, it is a way of retraining your sub-conscience thought. It is a retraining your thinking. There is a big stigma surrounding hypnosis, such as only being done by magicians. But it isn't. I do self-hypnosis for relaxation, and controlling my anxiety. It really does work. It is a deeper form of meditation. Then with practice and doing self-hypnosis exercises I automatically go into slower breathing and can slow my anxiety way down. I need to work on my eating habits also. But like I said before, if you are willing to change then you can do the work to feel better. My suggestion to you would be to read up and learn as much as you can about hypnosis. It may be something that you can learn to do for yourself. There are many books on the subject. Just be very careful when hiring a hypnotist. They can stretch out your needed time as well as soak up alot of money. Knowledge is power. Good luck on your healing journey. KathyP

Hi Kimberly; I used to come to this forum everyday when I was first diagnosed with Dysautonomia. Now I come back every now and then to see what is new or to catch up with what is happening with other members. I have to tell you that I know exactly how you feel. I have severe anxiety attacks...or should say had. That is one of the aspects of my Inappropriate Sinus Tachycardia and Vasovagal Depressor Syndrome. You should be very proud of your attitude. It took me a very long time to get back a possitive attitude. I became home bound and my symptoms made me feel like I hit rock bottom. I can also relate to not sharing any of your symptoms or diagnosis with family, friends or co-workers. I have 2 sisters who are nurses and don't understand dysautonomia AT ALL. They have told me before that it is just all in my head. But it doesn't matter what others think. You have a syndrome that can be extremely debilitating. You should never torture yourself by putting on a happy face and forcing yourself to do things when you feel terrible. Being honest and open will help others understand. Remember when it comes to excuses "your friends don't need it and your enemies won't believe it". What is important is that you and your doctor know what you are going through and so do all of us here. Please, don't ever give up hope. I thought I was at my end. I was very depressed. I couldn't go anywhere. But now, I learned to over come the anxiety. I know what I can handle and what I can't handle. I know that what I have isn't going to kill me. It is just going to be an obstacle to overcome. And believe me, you will find a way through it. You are on the right track. Keep up the physical therapy. Listen to everything your doctors say. Before you know it you will notice that you will have really good days and then those good days are going to out number the bad ones. I don't feel cured, but right now I feel better than I have in years. Sometimes I am too busy to worry about my symptoms. I read what my body tells me and go from there. You will get there too. This dysautonomia sure is a test of patience and will. Take care, KathyP

Dear Persephone; WAY TO GO!!! I know exactly how you feel. I have been doing quite well on my hormonal compounding and feeling more and more like myself. Betablockers have been a charm for me as well. It is so wonderful to hear news like yours. It gives so much hope. I hope this is just a taste for a healthy and stronger year for you. As for Oxford, GO FOR IT!!! I love England. I have been there and would love to visit it again. Take care, KathyP

Hi BeStillMyHeart; Welcome to the site. Please don't be disheartened!! You will find what works for you. Think positive. As for the immunoglobulins: you said you heard about "gammaglobulin". Well they both work pretty much the same way. Gammaglobulin is like a boost given medically to help the immune system the way immunoglobulin does. Immunoglobulin neutralizes the bacteria or viruses in the immune system, mostly in the lymph system. If you don't have any infections or viruses, this most like would not be an issue for you. If you need more info or feel you have problems with this area talk to your doctor. He would know what your condition entails. While on your healing journey don't get stressed about every issue. It will take time. And your doctor will help you understand all the technical stuff. If you were diagnosed already through extensive testing your doctor would know all that is going on with you. There are many people here that can help with the support and help you feel that you are not alone. Take care, KathyP

Hi Chrissy; I haven't been here is some time, but, your thread caught my eye coming back here. In my opinion, I think you should talk to your boyfriend openly and honestly. Tell him the same way you said it here. If he loves you he will be understanding. With you having POTS, being open with him is so much better that just pretending you feel good when in reality you are miserable. Just explain it to him and tell him how you really feel and see what happens. Don't be negative about the relationship. Be positive and point out the fun things you can do together, especially all 3 of you. Think positive and speak positively. I think it is great that you have found someone that you are very fond of and think as wonderful. But, remember, he is getting a wonderful person too. Just because you have POTS doesn't mean you are less of a woman. He will see that through your openness and honesty. Good Luck. KathyP

Hi Radha; Deep relaxation and a slow deep breathing works wonders. Try this: Sit down, preferably with your feet up and arms resting at your sides. for 10 - 15 minutes breath in slowly and deep while counting to 4, pause for 1 second, and then exhale slowly counting to 4. Let your mind either go completely blank or concentrate on a very soothing place. If you practice this every day, you can learn to do it anywhere. This has helped me tremendously. Sometimes you may have to do it longer. It won't take away your regular symptoms, but it will help control your breathing. Your doctor may have more breathing exercises. I hope this helps. KathyP