bellgirl

The one thing I have learned is that God is bigger than all of this, and he is with me and cares about me and you through it all!

I still can't drive long distances either because of sensory stimulation more than motion sickness. It does wear your autonomic nervous system out! I limit myself to a half hour at the most, but the most of the time drive only 5 to 15 minutes away from my home. If I'm being driven I can be in the car or plane for longer distances, because I don't have to focus on the road and all the stimulation of lights, people, stores zipping by, children on bikes, animals and whatever else is in my peripheral vision, but that is with the zofran for motion sickness. I actually tried once without the medication, and I suffered the consequences. I am actually better in a plane than a car, and a boat can make me very ill, but that is true for many without dysautonomia, too! It is much better when your illness is controlled with medication, but it's no cure either.

I had three incidents with misjudging curbs, scraped the side of my car and ruined the undercarriage of my car, and I didn't want to have a major accident, so I stopped driving, prayed for a solution and finally found an ENT in Birmingham, who without me knowing, had done a thesis on Autonomic Vertigo, and referred me to the Mitral Valve Propapse/Autonomic Dysfunction Center of Alabama, and the rest was history. I have zofran for long car, plane or boat trips, but I'm much better on my medications for POTS.

You need to pace yourself, rest when you can, and space out your activities; Caffeine is not such a great idea with tachycardia. Sometimes tachycardia can be the cause of fatigue, but sometimes we are just tired. I had company for Thanksgiving and I'm exhausted. So I feel for you. Just take it slow. Even if you don't feel like working out, you should go anyway!! It increases your metabolism to exercise. I walk my dog every day for 15 minutes, and do the elliptical and rowing machine at the YMCA twice a week. Don't quit; fight the good fight!! Just check with your doctor and listen to your body. Have you had your blood work done lately? You could be anemic or low in vitamin D3, too!

Thanks Heartandsoul; and Tuesday, well said!!

Hypovolemia means decreased fluid volume of your blood, which is more extracellular. Dehydration is your body lacking fluids, intracellularly, mainly water, because of low fluid intake, or vomiting/diarrhea. It is complicated. Google it.

We all have our times of joy and sorrow...I agree with all of the above!! My faith in the God has kept me from staying in the dark too long, as Raisin said. I do sing in the choir which uplifts me spiritually, and sometimes I swagger, but I have a great friend, who will steady me and keep me from falling. Be careful, falling has caused me some serious injuries, but all of which I have recovered, thank God! Drinking fluids is so important!! It helps with so much. If you are still dry, talk with your doctor about florinef/fludrocortisone. It's been a life saver for me!! Beta blockers are great for tachycardia/increased heart rate. Katy, look at my quotes below, and you will find the one you quoted! Mike, just be patient, find doctor's who will work with you, preferably those who treat Autonomic Dysfunction, and don't be afraid to take some medication, because they have really helped me!! We tend to be very sensitive to them, but that doesn't mean you can't take a quarter of a tablet!!

All of the above; but as I'm receiving treatment, I'm doing better. I was down to 100 pounds, but since on Fludrocortisone to balance fluids and electrolytes, I gained 5 pounds in a day!! My appetite has increased. I used to be nauseated all the time, but now since my vertigo is somewhat better, I'm able to eat more, too.

To me this is the hardest part of this illness, "If I only had a brain". You are NOT alone!! I also do the dyslexic typing, too, but was always a slow reader. I do have a high IQ, though. Maybe that's why it bothers me so much!! I find myself loosing words that I want to use in normal conversation with a more advanced vocabulary, and have to think of an easier way to express myself or stuttering trying to communicate. The words just fly out of my brain. My memory is horrible and used to be very sharp, too. I find I mix up homonyms, too, while writing or typing. :-( I excelled in writing and science, and am a retired RN, so I'm always researching, too, so you think that would help, but it really doesn't!!

I'm interested to see as well,Tobiano, so don't forget to keep us updated!! Healing prayers with Living Water!

Don't be upset or beat yourself up about it; we all do it. I just saw my neurologist a month ago, and I forgot to show him pictures of my Lyme rash. Even though I was treated by my primary care physician, that was kind of important, don't you think!

Are you on enough Florinef or is blood pressure or headaches an issue? If you urinate every hour, it sounds that all the fluid you're drinking is just coming right back out, and not doing a lot of good either way. That's how they hydrate dogs with subcutaneous IV's, when they need extra fluids actually, so I don't see why it wouldn't help.

I love the rowing machine, and use it regularly at the YMCA. It helps me to stretch out my back, because my muscles are so tense all the time, especially my shoulder area, and lower back with an injury in college. My friends picked me up and dropped me on a cement bathroom floor.

Loulou. It's not only metabolism, but if you are on the correct medication for POTS, it slows you down, too. Too, it is the hormonal factor at your age, and not being as active because of your illness. I make myself move, but I don't enjoy exercise anymore. It takes a lot out of me, and sometimes I'm too sick to do it, but I press on, because I know it is the healthy thing to do. Do you have a recumbent bike? Can you take walks? You need to move in some fashion, or the older you become, the harder it will be. Even if it is stretching, yoga, exercise laying down or whatever you have to do. There were several years, when I couldn't before diagnosis, when I was so dizzy and nauseated, but with medication I have become better, so that I am able to do more. I hope you will improve some, so you are able to be as healthy as you can be!!

It's quite a conundrum isn't it?! Well put Stephsurf... I have more trouble with this in the winter, but it's nothing like asthma (controlled now), which I've had previously and sometimes gives me trouble after a respiratory virus. I'm on a cardioselective beta blocker, Bystolic, which works very well, actually. It has a long half life, and I break my pill in half. But the trouble breathing, is literally like a vise squeezing the life out of me!! Malfunctioning baroreceptors, which can cause pooling and with vasoconstriction in the heart and lungs...I was even checked for cardiac blockage, it was so bad!! I also coughed up two mouthfuls of blood (a quarter of a cup) from my lungs back in 2004, which I believe was pooling Missyaulait, but that was before I was diagnosed. I thought I had TB or cancer. The scan came back showing a mass. The pulmonologist thought it was bronchitis...pish!! There are too many uninformed physicians... But on the bright side, there is hope!! I'm doing a lot better, but I'm taking a lot of meds and supplements. You need a specialist who knows what they are doing, an autonomic disorders specialist, or a cardiologist or a neurologist who is familiar with dysautonomia!! You also need to do your own research!! You also need to be patient. Beta blockers are all different. Give it a month; if you are still feeling like a slug, try another with the doctors order, of course. My doctor started one new med at a time, so we would know the side effects. That's the best way to do it, otherwise you will never know which one is to blame for bad side effects. You are your best advocate!! To better days ahead.

You are too funny, blue. Your post was not lost; I can relate to those fog days! You are quite welcome. Pm me with any questions or concerns. I am a retired RN, so I can always help to at least explain some medical issues that we share, anyway.

Sorry your aunt has MVP, too, blue, and could have undiagnosed dysautonomia, too. Your mother's attitude needs to change. I will remember her in my prayers. There is nothing worse than a family member not believing you have an illness. I dealt with too many doctor's, too, who didn't think anything was wrong, that I gave up trying. I went to a neurologist, cardiologist, rheumatologist, and ENT, then I waited until my health was failing terribly 13 years later, my husband was out of work, then part time, so we had our own insurance, which wasn't very good. Thankfully, he went back full time, and it was just in the nick of time. I was so dizzy that I was misjudging curbs and wrecked my car twice. I found my first doctor on the internet after much prayer, who really believed that something was wrong with me. In fact, he had done a thesis on autonomic vertigo, low and behold, and sent me to the Autonomic Disorder Center of Alabama in Birmingham and the rest is history. It was truly God's doing. How could I ever had known. It was his father that had the testimonials written by other patients about him, but I made the next available appointment, and it was with his son, Dr. Pappas Jr. He's one of the nicest doctors I've ever met!!

You can have POTS without a MVP. You can have a MVP and not have POTS. Do they go together? Yes, sometimes?! All I know is that I believe that I've had a MVP since birth, and they never caught it before this...which makes me wonder about all the doctor's I've gone to over the years. It is familial. My brother was diagnosed before I was, but it, too, was later in adulthood. He is 3 years older than I and doesn't have POTS or it is undiagnosed. A simple echocardiogram diagnoses MVP, but sometimes it can be auscultated (detected by stethoscope). If you've been to a cardiologist, they should have picked up on it, but the first one I went to, did not. They watch and wait. If it is bad enough, they do surgery on the valves like you had imapumpkin. When the valves between your atria and ventricles are not formed properly, there is regurgitation of the left ventricle back into the atria, when the blood from your left ventricle is supposed to be giving oxygenated blood to the rest of your body from the lungs, so it isn't efficiently pumping your blood, and if you are hypovolemic on top of it, that's a real problem. I drink over 80 ounces of water a day, and that's still not enough for me, that they finally put me on Florinef. It's made a world of difference. I gained 3 pounds of fluid in a day. I tend to have yo yo blood pressures, so I think there was a reluctance there because of that. I can be very hyperadenergenic/hypertensive. I have Pure Autonomic Failure. I've now had it for 16 years, but only diagnosed 3 years ago. If I had been a year older they wouldn't have tested me, because I would have been too old!! I'm 57 now.

You have to go to many doctors to figure that out, EGorman, sorry, but that's just the truth! Research, research, research!! Then go...and make sure you take others recommendations before you do, and still, don't believe everything you hear either. This site is a great place to start!!

I only found out about my vitamin D3 deficiency by asking to have it checked! After about six months it was in normal range, but I had loose teeth and I lost a molar and almost 2 others on the front bottom, because of it. You are your best advocate! Always do your own research!! I found that it increased my energy level immensely. Best thing I ever did. There are many of us here who have had this.

Mitral Valve Prolapse, too, Spinner, can be a contributor to SVT, and dysautonomia/POTS! This is a great list!

I just started it 3 1/2 weeks ago. Since I'm small, I was put on a half tab of 0.1mg; by a week and a half, I had horrible headaches, so they told me to take the same dose every other day, but I would have a headache every other day, so since it's a scored tab, I asked the pharmacist if it was homogeneous if I were to cut it in quarters, and she said yes. So now I take a fourth of a tab of 0.1mg every day, and I've been doing that for a week now, and I haven't had a headache. I'm going to call my doctor tomorrow, and tell her what I am doing. It's the same dose either way, and more consistent, so my body is adjusting. I believe too many people give up on a medication way to soon, when they can change the dose or time they take a medication. I even cut bystolic in half, so I won't have palpitations in the middle of the night, and it's not even a scored tablet! My doctor trusts my judgement. If I'm still feeling well after a week, I may try to take the original dose. She gave me permission to take a half or a whole tab, so I believe it should be titrated to work. I also gained 3 pounds right away. It is fluid, and I am grateful, because I was so dehydrated! I was drinking over 80 ounces a day, and I only weighed 100 pounds!! I had horrible corneal trouble last summer and I didn't want this to happen again. I use Refresh ointment in my eyes every night, or my eyes lids would literally stick to my eye balls. I needed help. This has been my best medication thus far!! I eat a banana every day, which is high in potassium. I also love potatoes, avocados, spinach, almonds, cashews, pistachios, beans, yogurt, salmon, mushrooms and all the other foods that are high in potassium, so I'm not worried about being deficient. I have my blood drawn every year.

To be honest, the doctor's don't know much more than we do about this disorder. All of us are very informed, and everyone has these disorders for different reasons. That's why I believe it is so difficult to diagnose. If you don't have any more than your typical blood work, doctor's are not going to pick up on the symptoms. I had a Cardiologist tell me there is no treatment for POTS, (I supposedly have PAF, too), at which time I shared that my doctor treating me for my Autonomic Disorder has helped me have a much better quality of life, because of the medications I'm currently taking!! That's true that if someone was cured they wouldn't be on this forum, but if you are over 50 and still sick, chances are that they are not going to find a cure in our life time. I'm not wanting to be negative, I'm just being realistic!! I would certainly tell all of you, if I was miraculously cured!! I certainly have not lost hope that it is possible, though, especially for the young folks here and other dysautonomia sites.

I was 41 when I had a virus, then my symptoms became progressively worse...very low blood pressure, very high blood pressure, then high cholesterol, binocular defect, swelling on right side along with heaviness, and neuritis for about 5 years. After going to all the right doctors, Cardiologist, Neurologist, Rheumatologist, ENT etc. I gave up in finding a proper diagnosis, until my symptoms of dizziness/vertigo crept in, horrible insomnia, heart arrhythmias, feeling faint, heart, and "coat hanger" pain, etc. After 3 years of this, and wrecking my car twice, I decided I was desperate! I found an ENT in Birmingham on line, who had rave reviews, and without knowing this, his son, also an ENT, Dr. Pappas Jr., did a thesis on autonomic vertigo. He diagnosed me right away even without testing, (although he did tests anyway for Meniere's), and sent me to the Autonomic Disorders Center of Alabama in Birmingham. The age limit was 55 and I was 54 at the time! God found these doctors for me in the nick of time, because His timing is perfect! Looking back, there were several times when I was younger that I felt faint, and from when I was little, I knew how to put my head between my knees after sitting down, when I felt that way, and I also have a Mitral Valve Prolapse, too, which I never knew until I was diagnosed at 54. I'm now 57, and will have this for the rest of my life, according to my doctor's. They say I have Pure Autonomic Failure, but I believe I'm more Hyperadenergenic; they are monitoring me closely. I've been giving one medication at a time, and so far, so good, I'm improving some with medication. I wouldn't be functioning without it! I also have Sleep Apnea and Fibromyalgia. Just curious...why would you think that no one in there 50's would be on this forum?! There are very techno savvy 50 somethings, who are much more informed than you think!! No offense taken, btw. I'm here to learn and to help. I'm a retired RN.

We've all been there, haven't we.... They need our prayers!!