bellgirl

That doesn't surprise me that you have a good neurologist at Duke. I used to work there and they have top notch doctors at that place. I hope your test shows something so that you are able to get the proper treatment. I have some issues with swallowing, but lately I've had more trouble with it going down my esophagus! Being on medications for dysautonomia does help with this. Hang in there!!

He should never had told you that he was going to fill out the short term disability, if he had no intention of doing it. That's not right. He was in the wrong, not you! Doctors should know what medications affect what tests. I was on a Beta Blocker when I had a Holter monitor, which I know gave inadequate results. That's not your job to have to figure that out. I thought about it after the fact. Don't be so hard on yourself...

I would think it would be a circulatory issue, but I'm no expert and am not sure. I've had some issues with my vision changing because of the dysautonomia, but I also had some corneal issues awhile back that caused my vision to be so poor, I could hardly drive. I know that is scary to happen. Maybe go to another opthamologist for a second opinion? That's what I would do. Your eyes are precious...do you have pupil dilation? That can cause blurred vision, too. Prayers for you to get some answers.

I'm sorry you are going through a rough time, and finances are definitely a concern for you and your family. How long have you had a diagnosis? It would have to be definitive for you to be able to file for disabiltity. Don't even go to the feeling that your family would be better off financially if....Praying for you to be able to make some wise decisions. Is anyone else able to work in your family possibly?

If your beta blocker is a cardioselective beta blocker, it shouldn't be the culprit. Since I've had asthma in the past, they made sure mine was cardioselective. Also I think that there are many reasons for edema. Have they checked your kidneys? Have you increased your salt intake? Or it could just be pooling of the blood due to malfunctioning baroreceptors in your vessels. That could also be the case with your shortness of breath. I'm being evaluated for the same thing on Wednesday. They want to check cardiac blockage, but to be honest, I just think it's the pooling from the dysautonomia. There was a study done not too long ago through DINET, I think where they determined that someone with POTS can experience a shortness of breath like a patient with COPD! Remember Rich...he had something similar...maybe ask him. Hope you find out the reason. Prayers for you!!

The first day, just after my first dose of .1mg of Clonidine, my mouth was so dry and my blood pressure dropped to 79/43, so I decided to skip my night time dose, and take half the next morning, and my B/P increased to 98/54, which is actually functional for me. It's my "normal"...what's normal, anyway. So now I'm on .1mg/day in divided dose, 1 tablet cut in half, because it is a scored tablet. It's important to divide the dose if you take less, because it only lasts 12 hours. Mind you, that I'm still on Losartan 50mg, and Bystolic 5 mg. I was on Losartan 100mg with 12.5 Hydrocholathiazide, but I told her I was too dry with the diuretic, so she cut that dose in half. It's going well right now, without any trouble. I've had one surge, and that's when my dog woke me up abruptly at 5am to get under the covers, since she was cold, and she disconnected my humidifier from my Cpap, pulling the tubing going from my mask to the machine...lol. She scared me to death!! All is well with my soul!!

I believe it is extra difficult for the young or young at heart. Most here, from what I have read over time, were extremely active, driven and very athletic, too. So sorry IceLizard; that is very hard when you have done so well in school to obtain a scholarship, and can't finish. My heart goes out to you!! What you said is not only true but very poetic, and melancholy. Prayers for you!

Well that's great, because that is why I wanted to get on it...How long did it take you to get used to it, and do you take it in the morning or at night, gjensen? I'm thinking 2 doses may be too much for me, but I'll monitor my B/P closely, because she cut my Losartan dose in half. She said I could experiment a bit. I'm a Retired RN.

Have you had a cardiac workup? Since I've been short of breath lately, too, my ANS doctor wanted to see if I had any heart blockage. I'm scheduled for an appointment next Wednesday. It's scary not being able to breath...I certainly can relate to what you are going through there. Is your beta blocker cardioselective? If not it could cause shortness of breath, but I don't like the sound of a low blood gas. I would definitely check with your doctor. I'll say a prayer for you...

Funny that bluegirl and bellgirl, would be wondering the same thing!! I just started on it today, Clonidine .1mg twice a day, decreased my Losartan from 100mg to 50mg daily, off of Hydrochlorothiazide 12.5mg for swelling in my ankles, which really made me dry, but decreased fluid retension. I'm also on a Beta Blocker, Bystolic 5mg, so we shall see what happens. After I researched it, I approached my doctor with the idea of lowering my losartan to be on it, so that I would have medication for my spikes in blood pressure affecting two areas of my body instead of one. I liked the idea that it would reduces the sympathetic response in my brain, and work on the excretion of aldosterone, catecholamines and reduce renin, since my sympathetic nervous system is more of a problem for me, and work on the excretion of aldosterone, catecholamines and reduce renin, in adrenal glands and kidneys. Losartan works exclusively on the kidney, and I thought Clonidine might help with the adrenaline surges I continuously experience around the clock. We shall see some sort of result in a few days, so I'll keep you posted. All antihypertensives cause dryness, unfortunately. I've been on them for about 13 years now. I'm always researching, because we are our best advocate!! If your doctor wants to put you on a beta blocker you might want to consider to ask for one that is cardioselective, so you won't be as short of breath. This is all a balancing act, gjensen, so yes, they seem to contradict one another. I'm on an antidepressant so I won't be so sluggish on my beta blocker, go figure!! It actually helps with the reuptake of norephinephrine and dopamine, too, and does give me more energy to do more, but the problem is if I do too much with this, I'm in trouble, and suffer the consequences later, so I try to limit myself to one or two tasks a day. Some days I've used all my spoons before I even get out of bed, but the sun is always shining, even if it is behind the clouds!

So sorry, I lost a dog, Windy, my Schnauzer, and had to make that difficult decision back in February; after 5 months, I rescued another terrier, so time does heal. I know it is raw right now, and difficult, because dogs have unconditional love for their owners. That's why dog is God spelled backwards. It will get better. I even saved her ashes. She is on our mantel. My sons are grown, so she was our baby. We had a cat, too, and she would sit on my lap constantly after it happened. She missed her, too, and was consoling me. They are so intuitive; much more than we give them credit for at times...I will say a prayer for you.

I have some trouble with my ears and with motion sickness, but with my Zofran in these circumstances I'm a lot better. Smaller planes fly at lower altitudes. That might help. When I took a flight to D.C. from Huntsville, AL. it was much better getting a business flight out.☺

Your welcome.

Everyone is different; I started by doing the stationery bike; now I've worked up to the elliptical and rowing machine twice a week at the YMCA. I also walk my dog about 15 minutes every day. I've been told that your calves are like your second heart, because you need them to push the blood back up to your heart. Most of us are hypovolemic, so we need all the help we can get. Cardiovascular exercise is what is most important, even if you have to push through, but you need to test your own limits, and not do it to the point of exhaustion, since you will pay for the consequences later. Swimming is supposed to be easier on the joints, and wonderful exercise for the whole body, but I need impact, because of my bone health, and I also can be bothered by the temperature change, and the gravity issue you are addressing. I used to be on the swim team and a life guard when I was younger and healthier, and if I lived by the gulf, I may have to change my idea on the swimming...lol. That to me is glorious, swimming in the gulf; the temperature is just right, too!! My mom lives in Panama City, so I try to go once a year, but this time, it was in October and rainy, plus I was helping her to get ready to move.

I use Zofran for longer than a few hour road trip, and that's with someone else driving. It helps with motion sickness, and was first used for cancer patients for nausea. Talk with your doctor. I also hydrate very well, too; but 6 hours is about my limit, and that's with medication to help. I've been diagnosed for 2 years, and that is still the same. At least I don't have horrific dizziness and vertigo anymore. I actually do better in a plane, believe it or not, because the trip isn't as long, and you can always ask for water, and they let you take a drink that you purchase in the airport on board, and you can walk around on the plane; it's just a little hard on the ears, if it's a larger plane, since they travel higher. I visited my sister and niece when she had her twins, non-stop flight to Washington, DC on a business flight, (small plane), I was even able to go on a sunset sail on the gulf, and go para sailing with my husband for our 30th anniversary!!

@trappedat20. We had a mother and baby guinea pig once. They were a gift to my boys for Christmas! They wouldn't sell me the mother without the baby!! You're right, they are very cute together. We've had every animal imaginable over the years, dogs, cats, guinea pigs, rabbits, hamsters, mice, birds and fish; I even rode a horse once, before I was sick, who bonded to me right away. His name was Opy. He was a Saddlebred, and a very different sort, because he was bottle fed in someone's home in a playpen!! I think he thought he was human. I would have bought him, if I could have afforded the upkeep, but they are extremely expensive. He was very feisty, and would try all kinds of antics, but not with me, because I'm just as spirited!! Before I was sick, I used to ride every other week for about 6 years, then my boys went off to college, and that was even more expensive than buying a horse...lol. I've tried a lot of forms of exercise in my youth, but I believe my horseback riding was the most rewarding thing I've ever done over the years. That's why it's always been my dream to own a horse. There is nothing to me that is more freeing than riding!! It's like having wings to fly.

Trappedat20, I used to have guinea pigs. They are great pets to have and very lovable. Mine used to tell me he wanted a carrot every time I would open the refrigerator by squealing!! I was able to get another rescue, Lily, in July. She is a terrier mix and very sweet. We love her!!

It just means that we depend on Him all the more!! Sorry about your swallowing issues. I used to have trouble with that, too, but it is much better now, although I still have some issues with GERD, and my esophagus emptying, it seems to take forever, especially if I'm eating too fast, because I'm starving to death, literally...lol. It's good to have my appetite back, though. That's huge for me!! I also have some issues with IBS, especially if I've overdone it, or if I'm out in the cold weather for some reason. PM me, if you like...

I have improved, gjensen; I used to be nauseated and dizzy all the time, but not anymore. I'm still thin, and lost some weight, about 15 pounds, but I'm trying to gain it back with more protein in my diet. Try protein shakes, eat light, and make sure your diet is balanced. I would avoid foods that bind you up, and eat small meals during the day. I used to be deficient in D3, so I would suggest getting that checked. I eat plenty of fruit and vegetables, too, as they will help with motility. I do go to the YMCA twice a week; I'm doing 2-3 miles on the elliptical and 15 minutes on the rowing machine. I started slowly on the stationery bike, and worked my way up. I also walk my dog every day for at least 15 minutes. Never give up!! We know Who we rely on daily. I'll say a prayer for you to get balanced out, so that you can have your life back. I've been diagnosed over 2 years now, and I'm doing much better with medications!!

I've been on Bystolic, another beta blocker, for over two years, and never had problems with low blood sugar. It is checked every year, and I just received my blood work results this year.

My nurse practitioner for my fibromyalgia is wonderful. He knows more about it than anyone, I know, and I've done a lot of reading, and as a nurse, I also have the medical knowledge to help, too. He's always going to seminars and teaching others and raising awareness!!

I would suggest to never exercise to the point of exhaustion, and make sure you are properly hydrated even during exercise, because that is so important for us all. We are all different, but I believe I was worse when I didn't exercise, but I initially had issues with dizziness/vertigo, and it was really bad, and during that time, it was next to impossible to exercise. I decided on my own before being diagnosed, being a nurse that even if I got on a stationary bike, that would be good or take short walks with my dog. Now, with treatment for over 2 years, I do about 2-3 miles on the elliptical machine at the YMCA, 15 minutes on the rowing machine, only on Tuesday and Thursday, then on all the other days I take at least a 15 minute walk with my dog, even in the cold weather. I just bundle up....because I only go to the YMCA twice a week, I don't feel like it's such a chore. I used to love to exercise, and have done everything known to man before getting sick, but with Fibromyalgia, too, it is never easy. I just am glad that I'm not in a wheelchair, but even if you are, you can always use the recumbent bike, or get physical therapy, which helps, too!!

TED talks have been all the rage, even here in Huntsville, Alabama, so I'm hoping that it might raise awareness!! Maybe I'll consider doing something on Dysautonomia here. I know one other person here that has been diagnosed with our illness, and she is a nurse, like I am. Something needs to be done, but I don't know how all the energy it takes to do something like this would be on me, and if I could handle it alone. Just being realistic...Mine also started with a virus that left me with a misaligned eye and neuritis on my right side, and now I have Fibro, too, that I believe was triggered by the Dysautonomia. At least we could present it from the medical perspective...now I've got an idea. I always wanted to start a support group, but maybe I'm supposed to do this instead....hum.

Doctor's don't have the time to research outside of their specialty, and the problem is that if there isn't a specialty for you, then your condition essentially doesn't exist...The good thing is that there is research being done for all of this, it's just not enough. I have the faith and hope that one day, they will find a cause for all of these disorders that seem to overlap. This was very interesting. Thank you for sharing. I love TED groups around the globe. They really get people's attention, and she is one who has the motivation and the wear- with- all to be able to make this movie.

This is so very sad, especially after caring for chronically ill children in my nursing career; how could anyone do or think such a thing as this...It is such a tragedy. That's why awareness is so very important, and more research into illnesses that are rare, and also individual in every case.