bellgirl

I also have hypertension and was on Losartan while having testing. Not many here have hypertension, so welcome to a rare symptom within a rare disorder. They told me to stay on it for my testing. I would talk to your doctor about the other medication though. It did not affect my results. As far as people not believing that you are sick, unfortunately that is a difficult issue for all of us. You will truly find out those you can trust and who your true friends are, and believe it or not, your family could be in denial out of love for you, because the last thing they want is for you to be sick; it will take awhile. I am on clonazepam (Klonopin) for the surges or physiological anxiety. It sounds as if you may also need a sleep study done, too. Talk to your doctor about it. There is nothing worse than insomnia, which makes the rest of your day full of fatigue!! I am the queen of sleep disorders, and my Cpap is my crown!!

Glad you are getting help at school, Puppy. I know it is good to be with your peers, and friends. I hope it works out for you!

I was tested for D3, and B12, but the rest of it, I just deduced from my symptoms which are very MS like. See all my supplements below, but I have had an increase in my energy level. I was deficient in D and I now take calcium, as well. It's been about 5 months now; Even my hair dresser noticed my hair was healthier, I've gained a healthy amount of weigh, and I'm able to do a lot more. I did have a set back a few weeks ago, but dysautonomia is like that, so my medications needed some tweaking, but I'm back to my new "normal" state again. Mind you, I'm also getting more sleep than I've had in years, since I now have a Cpap machine for my apnea, so that is also huge, but I know my supplements have made all the difference. I have a better appetite, as well!! Not as nauseous. I have a new problem though, my teeth are loose, because I was so sick for so many years without treatment, but I now have Invisalign, which is holding them in place right now, and trying to get them back in position...There's always something

Best wishes...glad you had a wonderful wedding day Love your pictures!!

Thank you for sharing...it really allows us to know that everyone has struggles and battles something in their lives, and we need to respect, love and encourage one another every day.

If someone, like a good friend asks, I tell them honestly what is going on with me. If they are just making conversation, I just say I'm doing better, because I'm a lot better than I was last year...even though I now have Invisalign for loose teeth . My treatment is helping with meds, supplements and exercise, so it really is the truth. Even my hair stylist told me that my hair is so much healthier. It's the supplements....they are helping immensely

Hi Christine, You need a doctor who knows about Autonomic Nervous System disorders, usually a Cardiologist, or Neurologist. Any doctor that is willing to work with you, is gold, though, so don't let go!! Welcome to the site

Dr. Watkins...sorry misspelled his name!

Hi, I also go to Dr. Susan Jane Phillips, at the Autonomic Disorder/MVP Center of Alabama in Birmingham, and she is wonderful!! She spends time talking with you, answers all your questions, ( I emailed her a picture of my dilated pupil once), and she is willing to work with different medications to get you balanced. I've been on 2 different Beta Blockers, and have increased my clonazepam, and if that doesn't help, I'll try a SSRI next. I had the same gammet of tests EKG, Echo, Stress Test, and Tilt table. In the last year I've been to see her 4 times, but it depends how you are doing as to how often you need to see them. I actually went 6 months this last time, but need to see her again in November, since she is tweaking some meds. I've also met Dr. Watson, too, and know someone who goes to him. He seems very caring, too. I live in Huntsville, AL.... Just so you know Vanderbilt just does research. They don't treat dysautonomia.

I understand, you just want to feel better. I hear you, but I really don't know whether it will make things better for you either, because there is still so much they don't know!! Some places are just looking for willing guinea pigs, too, yes, for research, and I know that is important, but to be honest, I'm just tired of it all, so you've caught me at a weak moment. I was disappointed with my last 2 doctors appointments, so I'm not the one to be advising you either way. Do what you think is best

Thank you for taking the time to answer my question, so fully. Yes, I have heard of small fiber neuropathy, but I told my neurologist about my nerve pain. He checked my reflexes, as always, but never mentioned the test. My Autonomic Nervous System doctor told me to go to a Rheumatologist to have RA ruled out first. I went to one when I first had symptoms 14 years ago, and they tested me for a lot of things; I'm sure that was one of the tests they did. I don't have joint pain or swelling, so I know it's not that. Evidently, Vanderbilt checks for small fiber neuropathy, but don't treat; they just do research. All I know is that I was in some major pain for about 5 years on one side of my body for about 5 years that subsided (couldn't even touch me after a virus) at first, then it went away, then 2 weeks ago, I got it back. My PCP will do some blood work within the next month; I will ask her to draw extra for an EBV titer, because I have my suspicions, that it could be related to that, as well. But I also get major aching, as well, like I have the flu, which could also be related to a virus. I was checked for Lyme, when I was first diagnosed a year ago by my neurologist. It lasted for about 2 weeks this time, but one night I was literally incapacitated by it; I had to go to bed. Today, I'm fine...have some residual, as always, but I feel I've developed a high threshold for pain!! My rigidity is worse, too, so I'm trying to half my beta blocker twice a day, and increasing my klonopin to a tiny dose during the day per dr. order, of course, but that isn't for nerve pain. I thought she might give me cymbalta or neurontin, but she would prefer not treat until she knows what's going on. Everyone is so specialized that my PCP does more blood work than the rest of my doctor's combined. She's the one who gave started me on my beta blocker, angiotension antagonist, and diagnosed my D3 deficiency (although I suggested she test me for that). She also tested me for myasthenia gravis, and ordered an MRI, because of my dad's aneursym history. Sometimes I wonder, whose doing the diagnosing. I finally told them all the supplements I've been on for months now, that I decided that I needed, and they have helped me immensely!! Thanks again

Rest, Relax, Restore...and best wishes!!

I was a peds nurse and had two boys of my own. Respiratory problems are always scary with little ones, because their airways are so much smaller, and it always sounds way worse than it is...obviously they are being well taken care of by you and the doctors. So sorry you are having to deal with this. This is a bad time of year for allergies and asthma for me, as well Praying for your children, but that you also take care of yourself, because if you aren't well, who will take care of your children? Try to relax, and realize you can only do so much...

Sorry that your poor son had to endure this horrible pain....thanks for your insight. I'm going to do more research myself, as I have been suffering with nerve pain lately; they are thinking I have fibromyalgia, and I've been referred to a rheumatologist. I think I'll try the amino supplements first. I have been drinking whey protein in shakes.

I agree with Mom...certainly it is up to you, but you couldn't pay me to go through that testing again!! My meds are still being tweaked, and I was a lot better until about a few weeks back. I had a lot of nerve pain, so they think I have Fibromyalgia, and want me to go to a Rheumatologist, but I'm tired of going to doctors, to be honest. I've heard Lyrica is not tolerated well by dysautonomia patients, but maybe neurontin or cymbalta would be. My question to you is...is it because you are still feeling badly with treatment, and feel like you aren't getting adequate care, or do you just want to know? because if is the latter, it wouldn't be worth all the trouble...

If you don't mind me asking, Arizona girl, did they find out what was causing your nerve pain? I'm just about ready to make my appointment, and could maybe benefit from your experience with this. I went years ago, and they never found anything, and I'm just not wanting to go to another doctor right now!!

Good for you!!

NOT at 105# it's not...lol

Love it, Montie, "Fight the good fight"!!

Rich, I believe what you are saying is true, but many doctor's don't do the lip biopsy, and I don't understand this. I have to make an appointment with a rheumatologist now because they think I have fibromyalgia...I thought everyone with Dysautonomia had fibro...still learning...

Thanks...this was very informative and easy to understand, docpots. I've never seen such a thorough explanation for ANSAR testing, but can tell you from knowing my body, and being a nurse, that I have more sympathetic responses, and think I am being treated properly.

I just wrote "roller coaster ride" in a personal message; it's like you were right there Lifeless, but I wasn't talking to you; That describes it very well. At least you are still holding on!! Hand in there, and when you can't hold on any longer, there is always someone here to give you a ((hug)).♥ We are here for you!! I used to love roller coasters, but I need something a little kinder to my body these days. How about swimming...there you go

Wonderful attitude and poem, Issie... Yes, we all have those hard yucky days, but dwelling on those will not allow us to enjoy the good ones; it is so much better to dwell on God's gift of life, we have been given, and enjoy the small moments, like when I saw a ruby throated hummingbird, who paused just a second to look at me the other day!! All the birds at my fountain and feeder, or the doe and fawn, I was able to pause, and see in my backyard, because my day was slower than usual, that I might have missed, otherwise. I call these miracles in the moments that we are given!! Not to say there aren't days that I am down, throw a pity-party, even cry on occasion, or get frustrated, too, getting a taste of some normalcy in life one day, and then POTS rares it's ugly head, because I have days like this, too!! We have a choice everyday on how to act or react to it. You also need to be proactive in your treatment, too, with your doctors. This disorder can be very humbling at times, and we need to accept help from others, too, at times, so we can do things we do enjoy!! Certainly, for those that are clinically depressed, you should talk with your doctor....that's a whole other issue, and needs to be addressed.

Since it took me 13 years to receive a diagnosis, I can not only say acceptance, but relief to have treatment . I've been diagnosed over a year now...Had lots of years knowing I was sick . Just glad that I have meds, supplements, Cpap, and exercise to make me the best I can be

Interesting article...I have never had a root canal...definitely food for thought!