bellgirl

I went 13 years with symptoms, starting with a virus; thought I had optic neuritis in left eye, but by the time I got to the neuro 2 months later, the pain in my eye was gone. I had nerve pain and heaviness on my right side, too, with pitted edema in my right ankle, and was put on medication for high blood pressure...(my grandfather died at 46 of a massive stroke) 2000 Binocular defect in left eye diagnosed after 18 months 2003 Surgery on defective Eustachian tube in right ear after another virus 2004 Coughed up 1/4 cup of frank blood..hemoptysis...no explanation... 2008 Tachycardia, pressure in chest, insomnia, fatigue, hot flashes, nerve problems, tingling, numbness, electric shock pains in groin 2009 Dizziness, head and neck pain/fullness, jaw pain, nausea and episodes of extreme Vertigo with projectile vomiting and bedridden for several days X 2 2010 Still dizzy/ GI and GU problems/ Abdomenal Pain, IBS and Bladder spasms 2011 Misjudging curbs/damaged my car 3 X!!! 2011 August/September...Diagnosed with Dysautonomia/Pure Autonomic Dysfunction/ SuperPOTS/Mitral Valve Prolapse/Sleep Apnea 2012 Relieved that God does answer prayer, and that there are lessons in the WAITING

I agree with Lenna...I'm on Losartan, too, which decreases Renin/Aldosterone production in the kidneys and adrenal cortex to decrease vasoconstriction, and I have symptoms of hyper/ low flow and high flow, so where do I fit into this weirdness One minute I'm an ice cube, and freezing and the next, I'm on fire and sweating/flushing. Very rarely do I feel normal, temperature wise. I'm thinking it's my hypothalmus.... I'm way past menopause, so I can't explain it away with that, as I used to think, to understand all of this!! In fact right now, my right hand is cold and my left hand is hot, and I'm typing

I used to be very active all the time, and getting used to the "new normal" is sometimes a hard thing, but my motto is, if I can get one task done a day , I'm doing well; so no matter how I feel, I try not to overdue or I will suffer the consequences. Yesterday was different than usual. I had to get my hair cut, so I did, but when I got home, I had a friend "show up", who I hadn't seen in years, and of course, I was glad to see her, but last night I had book club, too. Ordinarily, I don't do alot at night or in the morning, afternoons are best for me, so if I do something in the morning, I need to rest in the afternoon. I didn't get any down time, and I went to book club, anyway. BIG MISTAKE...I love being with friends, and this is just once a month, but today I'm still in my PJ's because of it. I don't even have the energy to get dressed, but it is my own fault. I did way too much yesterday, and today is a down day no matter what i want, because I was stubborn!! So I know exactly how you feel. Pacing yourself is SO IMPORTANT. I am still learning, too, if it makes you feel any better...

Issie, have they considered sarcoidosis? So sorry this is happening...I will pray for you both, as well.

I have learned that when I get one thing done a day, it's a good one Sometimes it's getting a bath, sometimes it's being on the computer, sometimes I can get out to get groceries, sing or go to prayer group, but mostly I stay at home, because if I overdue it, I suffer the consequences!! Beta blockers are great for tachycardia, clonazepam helps with dizziness and sleep. Somedays I just appreciate being alive and breathing It's the little things in life that are important, like family, friends, and God is good all the time! You need to find a good doctor, who will listen, too! I think going to Mayo is a great idea, but you need to find a doctor at home, too!

Thanks Lemon, I don't believe that program for a minute. Most of us here have exercised all our lives!! I have done every exercise known to man, and have always done everything I can to keep healthy.

There are alot of people even without dysautonomia that have telangiectasias, as they get older. I have some on my face, and legs, too. I sometimes get petechia, as well, and this worries me, because my mom has Chronic Lymphocytic Leukemia, and I am related!! So far, though, my blood work has come back normal...

I've had asthma and allergy problems for 26 years, developed after I had a child, but never had this in childhood. I was so sick when I was first diagnosed, I needed a prednisone injection, epinephrine, was on 5 medications including 2 inhalers, and was put on desensitization shots for 4 years, twice a week. I weaned myself off of all meds except an inhaler in 6 months. I get flares on occasion during the spring and fall with respiratory infections. In 2004 I coughed up about 1/4 cup of blood,( 2 mouth fulls), and after a chest xray and lung scan in the ER, they told me I had a mass and to go to a pulmonologist. I went thinking I had TB, and he told me I had bronchitis (I wasn't sick or wheezing at all)!! Right then, I knew this was not normal, along with all my other strange happenings over the years, but other than feeling fatigued, I seemed ok. Since my dysautonomia diagnosis (Pure Autonomic Failure), I also went to a sleep apnea clinic (30% of people with this disorder have this), because of my inability to sleep, which I thought was because of my tachycardia, but it was more. My O2 saturation is fine, but I had 15 apnea episodes, 64 hypopneas and 92 arousals in one night. I hadn't slept properly in 3 years, and it was taking a toll on my health in general; I lost 10 # without trying. I now sleep with a Cpap and clonazepam, and I'm much better. I do have SOB on occasion lying down or sitting at a funny angle, and if I overexert myself. I find myself holding my breath on occasion, too, ( for no apparent reason, and having to remind myself to breathe), but I do exercise on the elliptical, and I believe singing is imperative for me. It strengthens my lung muscles; I used to play the flute, as well. I was tested for acetylcholine receptor antibodies, because I sometimes have droopy eye lids, and I thought I might have Myasthenia, but I don't. I would like to be tested for certain proteins for mast cell production, but haven't done that yet. No one has mentioned cardioselective beta blockers. I am on Bystolic, and I am amazed at the difference it has made with my tachycardia. I don't find that I have any more shortness of breath, because of it, but it is a long acting and new beta blocker that works very well for me. I still have erratic heart rate at times, but I'm not as tremulous, which was a major problem for me. I thought I was exhibiting symptoms of Parkinson's Disease or Shy Drager, and that worried me, but after going to my neurologist, I was assured that I have no more chance of having Parkinson's than the rest of the population. I have hyperreflexia, too, more on my left side. I have another appointment with him in another month. I am having a major GI flare right now. I am in constant pain. I'm going to take some of my smooth muscle relaxer this morning, because I can't stand it anymore! My son's getting married next week, I'm so very excited, so I'm under more stress than usual! That's probably what it is. We have to travel 7 hours there, and I always get dizzy in the car!! I'm praying that I will NOT be sick Thanks for all the wealth of information...

Thank you for this explanation, it was the most informative, and thorough article I have read, not that I understand it all, but there is still so much that the scientific community doesn't understand either, and sometimes they do treat the symptoms and not the causes, but when they don't completely understand the causes, and everyone is physiologically different, they have no alternative. I've always said that science is both an art and a science, and that is why it is helpful to be right and left brained in our thinking when it comes to this. I believe if you find the right doctor for you individually, you will eventually get the right palliative treatment. It is true that there are not only different forms of this illness, but also different degrees of it, as well. We are our best advocates, and the more we do, and the scientists do to research our illness, and find doctors who are willing to work with each one of us, individually, the better the treatment will be!! We also need to help promote awareness, too, so that more doctor's will be interested in learning more about this disorder, and be proactive in finding a reason and a cure...Exercise is so important, no matter what you have to do to get it; I'm convinced of this. Do everything in your power to be as active as you can be, listen to your body, rest when needed, but moving is imperative to be as healthy as you can be!

This is what my doctor told me, but to be honest, I need more, probably because of being on a diuretic

Well then I suppose I must be very different than most, because my medication regimen is working fairly well for me now. I really don't want to change a thing. Less tremulousness, dizziness, tachycardia, normal blood pressure, no vertigo, and no fluid retension. Still have some symptoms, but I'm able to do more than I have in months! I have been on a medication for high blood pressure, a angiotension receptor blocker for about 12 years now. I've had to change dosage on a few occasions, but I've never had potassium depletion, and I only started on the diuretic about a year ago, but I love potatoes and bananas and OJ, which are all high in potassium. I had major POTS, and now I don't. It was the bystolic, my second beta blocker, that made the difference, and clonazepam at night with Cpap. I still have allergy/slight asthma when I have respiratory issues and some bowel and bladder spasms on occasion, but after 13 years without a diagnosis, that's pretty good after about 6 months. I was very in tune with my body, and compensated with a lot changes in diet, natural remedies, medical knowledge, etc. In fact, I told my dysautonomia doctor that I actually looked up dysautonomia and POTS before my diagnosis, but was confused because of my high blood pressure, and thought that it couldn't be my diagnosis, because of it. We are all very different, and I am interested in all the theories here, but I'm here to say, I'm living proof of it all working, right now, anyway. I certainly don't know all the answers. I am still learning and amazed at all the intelligent people on one site

I can get bladder spasms if I drink too much, and also can have fluid retention. I drink more when I exercise or in the heat of the summer, but when I tried 80 ounces, it was too much, so I usually stick to 64-72.

I also take a diuretic, small dose, Hydrochlorothiazide 12.5 with the Losartan 100mg, because I was retaining fluid in my ankles. I actually have to watch my salt intake, and can only take so much fluid, too, so it's like a double edged sword! "But I am fearfully and wonderfully made."

I am on losartan 100mg. and also on vitamin D, but I had high blood pressure, before I was diagnosed with dysautonomia, and because most have low blood pressure, (even though I had looked up this disorder before I was diagnosed), I just ruled it out as a prospect, because of it. I guess we are all different! I have asthma and other allergies, inflammation as well. Thanks Jangle for your research! To the ladies, menopause or hormonal changes, exacerbates dyautonomia terribly; I was my sickest through that period which was 7 years in all. I was only on my blood pressure medication at the time, and wasn't diagnosed, and thought I was dying. Estrogen does help with this transition. I had migraines, too, that I no longer have. I also take Flax seed oil, (Natural form of estrogen), which I believe helps with any inflammation in the body. I was originally recommended to take this for my eyes by my optometrist.

I actually woke up with chest pain this morning; I also can get pressure in my chest and on my right side with pain down my right arm. Stiffness in the neck and back of head, as well. It is always worse when I am symptomatic. It doesn't matter if I have tachycardia or not. I am nauseated and dizzy today, as well. I have a Mitral Valve Prolapse diagnosed by echocardiogram, had a stress test, EKG and Holter monitor, too, but haven't had any other abnormalities. I also take a beta blocker. The first one I was on would lower my heart rate, too much, Atenolol, but I'm also on a med for high blood pressure, so my doctor put me on a longer acting one that is relatively new. It's called Bystolic; there is no generic for this medication yet, but it is amazing the difference it has made for me. I would get all the tests you can to determine your best course of treatment.

There were a few years I stopped exercising regularly at the gym, but I would walk with my dog short distances; I was too fatigued and dizzy to do anything else. Normally, before I became sick, I was so hyperactive, I was always exercising...then, I went back to the gym, because I literally felt like I was dying. I believe the cardiopulmonary workout was good, but it didn't make me any better. I needed help medically...I needed medication, even though I hate taking any medication, it has helped me immensely!! I have a better quality of life with both...Who is this Dr. Levine, anyway? If I were you all, I would listen to your own body, exercise, but don't over do it, eat well, go to a doctor you can trust, and by all means do your own research, because we are our best advocates!! I also pray about everything, and the God gives me peace

There is alot about health of horses, because racing and showing are hard core businesses; the better horse wins!! It is actually harder to get into VET school than medical school for humans!! not joking... I don't know whether it is because there are more applicants, (more competition), but this is what I've always heard. My dog's vets are very knowledgeable, and I will ask them human medical questions at times, even though there are differences, some things are similar

Duke Medical Center isn't very far from Fort Bragg in Durham, North Carolina, and they have a wonderful facility. I don't know about what they have to offer for dysautonomia, but I worked there years ago, and we had patients from Fort Bragg. Any major medical center should have the latest technology! They had a whole floor in the hospital for pediatrics, with 5 units, just for kids, back then, so I am sure there would be doctor's there for this...

It was Dr. Pappas Jr., his son. He was wonderful...I love the doctor's in Birmingham. I heard so many good things about UAB Children's hospital, but Dr. Pappas is affiliated with St. Vincent's hospital, and Dr. Phillips, my dysautonomia doctor, is affilitated with Trinity. Dr. John Riser, my neurologist, who specializes in vertigo, is affilitated with Brookwood. My sleep disorders doctor, Dr. Adams is affiliated with UAB. Birmingham actually has 5 major hospitals! I've gotten the best of care there. I chose Birmingham because it is only an hour and a half away, and my son lived there at the time and was going to UAB's physical therapy school....Where do you go now?

Sorry, I misunderstood...thought you needed a doctor for diagnosis, but you were wanting to participate in an exercise program...I see!

My doctor takes patients only up to 55. I made it just in the nick of time, (I'll be 55 in two weeks), but surely you should be able to find a cardiologist who would do the same tests. Tilt table test, stress test, and echocardiogram. You don't even need any blood work, if you've had some recently by a general internist. I bet if you went to a Medical Center, they would take you. I'll pray that you will find the right doctor. I found an ENT, Dr. Pappas who did a thesis on Autonomic Vertigo, who knew what was wrong with me immediately, sent me to the Autonomic Disorders Center, and Mitral Valve Prolapse Center of Alabama in Birmingham; I found him on the internet!! I didn't even know about the thesis at the time, but God did!!

I'm right handed, but dizzy dancing, I'm a lefty

Moderate climate is the best...Hawaii sounds wonderful, but I agree that you need a doctor who specializes in Autonomic Disorders, so that he can get the proper treatment. I was sick way too many years before getting the proper treatment, and didn't need to be. With medication and treatment, I'm a whole lot better I was never in denial, but my doctors didn't believe me, and I knew something was terribly wrong. Just be glad that he was diagnosed!! That's a relief in itself Now he can take care of himself, and you can be a great support to him as well. I hope all goes well in June or July...

I used to love to run, and loved the endorphins, but holding on to the elliptical is imperative now!! Dancing makes me too dizzy More power to you

After severe dizziness and vertigo, I was my sickest NOT exercising. Of course, if you are throwing up and can't walk, you just can't do it! When I was still dizzy, though, I rode a stationery bike, and walked my dog short distances, and tried to be very careful. The treadmill makes me nauseous, but I am actually on the Elliptical machine at the YMCA twice a week now. I started out slowly, but actually even though I sometimes have to push myself to go, I am so much better in the long run. Just listen to your body, don't over do it. It will help with the blood pooling in your legs. I am now up to 3 miles again. I had a set back last winter with a bad sprained ankle; I'm so accident prone, falling and running into things, but I am determined that this won't get the best of me!! I also walk my dog short distances every day, unless it is pouring rain!