lfreem02

You may want to look at the Microsoft Band (http://www.microsoft...uctID.308308800). It shows the time and heart rate on the display at all times. It can also be used across platforms.

I have had several cortisol tests done, and they have been high. There has been no explanation. I have also have a vitamin D, iron, and carnitine deficiency, and take supplements.

I had a tough time with Propranolol. I get some of the symptoms you mentioned without taking it. Sleeping is not an issue for me, but I was having very vivid dreams and pounding heart that would wake me up while taking it. I had a hard couple of weeks once I stopped. I have been taking Atenolol at night, which has been okay. I can't take beta blockers in the morning, because they make me too drowsy. There are a lot to choose from, so hopefully your doctor can find one that works better for you.

I do think there is something with the weather. I started a flair up last week, and am still trying to get it to calm down. Monday and Tuesday were the worst. I have had really weak legs, flu like feeling, heart rate in the 50's and 60's, my pupils were dilating excessively, blurred vision, brain zaps, and I have had a headache every day. I love the cold, because I tend to feel better, but I think the time change made things worse. The sunlight and then headlights on my way home from work has been horrible. A couple of my friends have had migraines this week. Hope everyone feels better soon!

Here is another link. Hopefully it will work. https://digestionsessions.com/dr-datis-kharrazian/

Actually, it looks like the link works from the post. I have had issues with them in the past.

I received an invitation to a Cleveland Clinic Online Chat that I thought others would like to participate in. You can copy and paste the link below into your web browser and then register. I have participated in others, and they have been interesting. You can send the doctors questions in advanced and they will answer them. Wednesday, November 12, 2014 - 12 Noon (Eastern Time)http://chat.clevelandclinic.org/chatpage.aspx?chatid=1696&utm_campaign=hvi+enews&utm_medium=email&utm_source=hvi1411&utm_content=heart+chat

This is an interesting video about gut to brain issues. It talks about motility issues, and issues with the vagus nerve and autonomic nervous system. http://www.youtube.com/watch?v=DnMgn--Qv3c#t=126

My doctors haven't figured it our either. When the weight started adding up a couple of years ago, someone at work asked me if I was pregnant. I was always thin before hand, and now weigh what I did when I gave birth to my daughter (she weighed 8lbs 2oz, and I had 15lbs of fluid). I went off of Lexapro, and then Zoloft, and have been pushing myself at the gym. I found out a have a carnitine deficiency, so I have been taking supplements. I have managed to lose seven pounds, but my stomach is still big.

I have not had my upright plasma norepinephrine levels checked, and have not been told I have "Hyperadrenergic POTS." I was diagnosed with Dysautonomia two years ago by a Cardiologist in Alabama. The doctors here at Emory determined that I have some type of autonomic disorder, but didn't know how to treat my symptoms; at least successfully. I was told to wear compression stockings, consume a lot of salt, drink a lot of water, and was prescribed Propranolol, Fludrocortisone, and Midodrine. I was treated for orthostatic hypotension, even though I experienced hypertension. My current Cardiologist did a stress test, and even though I was in good enough shape to make it 10 minutes on the treadmill, my blood pressure was 200/100, and my heart rate was 190 (the doctor said I had way too much adrenaline being released). The treatment I had been receiving was making me worse. I had terrible tremors, high blood pressure and heart rate, couldn't drive, and felt like there was something wrong with my brain, because I felt like I was leaving my body when I was walking or driving. I did have an EEG, which showed unusual activity in the left side of my brain. I was switched to a low sodium diet, still drink a lot of fluids, exercise daily, and take Atenolol, and Klonopin. I stopped taking Lexapro/Zoloft due to the weight gain, which I am still struggling with. I still have fatigue, eye floaters, brain fog, heat intolerance, excessive sweating, pounding heart, edema, but I can drive now (with caution), and work full time, which is a daily struggle. I have a long list of other symptoms that occur on and off. I am working with a sleep specialist to determine if I have hypersomnia (excessive day time sleepiness). Caffeine and decongestants are a nightmare. I tried to drink a frappuccino with caffeine for the first time since my diagnosis to help with my brain fog when driving a few weeks ago, and had to pull over into a parking lot. I was finally able to drive home, but I felt bad for days after. Afrin also made my symptoms worse a couple of weeks ago. I did have a doctor in the ER tell me that my body was releasing too much epinephrine, which was causing my heart rate to skyrocket, and my head to feel like it was going to explode (I tried taking a calcium channel blocker and then walked to the bathroom, which resulted in the trip to the ER). He didn't actually test it, but based on a conversation with my General Practitioner, he was able to come to the conclusion. It sounds like you may want to explore it in case you need to change medications.

I have had issues with burning spots on the surface of my lower legs. Then I have had a feeling of cold water flowing just under the skin on my arms. I haven't been able come up with a trigger, and the different doctors I have seen seem to chalk it up to Dysautonomia. I am seeing a new neurologist next week and will see what she says. I have a list for her.

I don't feel like I have to urinate until I really have to go. I have to monitor how much I drink and go regardless of how I feel. There are times that I have strange pain in my hands when I have waited too long, and then it goes away once I use the bathroom. I have to be very careful with exercising, and I can't always retain complete control of my bladder. Fortunately, I don't have issues with emptying my bladder like the two of you. Do, you get a lot of infections as a result? It seems to be an unfortunate symptom of autonomic disorders. Sue1234 - I am curious if your gyno. will have an explanation, or just say it is a nervous system issue.

Sue1234 - it is a little more complicated than that. Meat is a way to get carnitine, but the body can still get what it needs when someone is a vegan or vegetarian. I have read posts on other forums that individuals are taking carnitine to help with Dysautonomia symptoms (gastroparesis, vomiting, and fatigue). "Carnitine is an amino acid that is required for the transport of long-chain fatty acids into the mitochondria, the site of beta-oxidation of fatty acids. About 25 percent of the carnitine required by the body is produced by the liver and kidneys, while the rest is derived from dietary intake, primarily from red meat, poultry, fish, and dairy products. Most of the carnitine in the body is located in the voluntary and cardiac muscles. The secondary form of carntine deficiency can arise secondary to metalobic disorders in the mitochondria. Blockage of metabolic pathways in the mitochondria leads to a build-up of acyl compounds. These compounds then bind to carnitine and the bound complex is then excreted by the kidney, causing carnitine levels to drop. Some of these mitochondrial disorders include cytochrome c oxidase deficiency, mitochondrial ATPase deficiency, and fatty acyl-CoA dehydrogenase deficiencies. In both primary and secondary carnintine deficiencies, increased dietary intake and supplements of carnitine can be beneficial. Although the exact mechanism is unknown, it is thought that flooding the body with high concentrations of carnitine assures that some carnitine are able to get into the cells."

It is interesting that you bring this up. I am working with a Neurologist who is a sleep specialist. I have an appointment with him next month to get my results for possible hypersomnia (excessive day time sleepiness). I have been able to access my blood test results and I am Carnitine deficient. I eat a plant based diet, but it doesn't explain the deficiency. There is a link between Carnitine and Mitochondria, which I am still doing a lot of reading about. I am curious to see if anyone else has a Carnitine deficiency. I am also looking forward to speaking with my Neurologist. He does a lot of research, and has traveled to other countries to better understand issues like hypersomnia. He is seeing more Dysautonomia patients in his office, and has been working with other doctors/researchers who specialize in the autonomic nervous system.

I have not been diagnosed with an autoimmune disorder. I am having my CRP and iron rechecked in six weeks. My TIBC is 489 mcg/dL (high), UIBC is 418 mcg/dL (high), Carnitine Free is 15 mcmol/L (low), and Carnitine Total is 21 mcmol/L (low). I am starting slow release Fe iron (45mg) along with vitamin C this week, and then we will see if my body is absorbing iron. I am also having a night and day sleep study next week to see if I have hypersomnia. Hopefully something will explain my excessive sleepiness, fatigue, and memory issues. I am tired of finding trash that I have thrown into the dog food bin, and trying to scoop dog food out of the trash.

I had blood work done last week, and my CRP was 12.75 mg/L. It was 2.92 and 2.00 two years ago. I am trying to understand how this fits in with Dysautonomia. I have seen mentions of CRP levels under different discussions, but am looking for more information. The doctor who ran the tests is a sleep specialist, so I sent it to my GP and Endo.

Blue - I see an Ophthalmologist annually, who had offered to refer me to a Neuro Ophthalmologist if the issue continued, but it stopped. The only issue she found is that I have excessively dry eyes, which I use OTC drops for. My vision varies. I have issues when I am walking, because my vision rocks. No one can explain it, but I am seeing a new Neurologist in October.

Have you looked in a mirror when you get blurry vision? I had issues with blurred vision during the first three months of symptoms. I looked in a mirror one time and noticed that my left pupil was dilated, but my right was not. I tried moving around to change the amount of light entering my eyes, but only my right pupil changed size. It finally stopped on its own. I found out later that the sympathetic nervous system controls pupil dilation, which would make sense that it would be an issue with Dysautonomia. Getting on the correct medications has helped a lot with my lightheadedness, and the feeling of anxiety. I was initially treated for hypo instead of hyper, so I was getting worse with medication. I also make sure to drink a lot of fluids, especially cold in the summer, but I have to keep my salt intake low. I do have ups and downs still. I called the microwave the AC, and put the dog food scoop in the trash can a few days ago.

Thank you for the replies - I had not noticed it doing that before. I was sitting down and my heart rate felt a little off, so I checked it. The changes were every second. I just checked it, and it is staying steady at 71-72. Maybe what happened was a good thing, and all of the other times it has been not beating correctly ; )

After two years of Dysautonomia systems, they were finally manageable, not great, but I could function. I was in a car accident a couple of months ago and suffered whiplash and strains in my back. Since then some of my symptoms that had finally gone away came back. My heart has been "ticking" as my Cardiologist puts it. It beats hard, and I can feel it during the day. I have a watch that shows my heart rate and it has been going up from around 72 to 73, 74, 75, sometime skips to 77, and then drops back down 76, 75, 74, 73 and then back up and down with each second. Has anyone else experienced this? I am taking 50mg of Atenolol at night. It makes me too sleepy to take it in the morning and at night. I know my doctor would tell me to take 25mg at night and in the morning.

I was vitamin D deficient, and took a prescription supplement for it. My Cardiologist said that most of his patients with some form of Dysautonomia are deficient in vitamin D. I have read though that the prescription form is not D3, which is what is needed. So, I am taking over the counter supplements. I watched a special about MS this weekend, and the highest rate is in Orkney Island in the north of Scotland. Vitamin D levels in people who live there have been shown to be very low. MS is almost non-existent in areas around the equator. I am sure there is a genetic factor, but researchers have found a strong link between vitamin D and nervous system disorders. I haven’t heard though if the disorders cause the body to not be able to process and absorb the vitamin properly, or if the vitamin deficiency causes damage.

My Cardiologist hasn't referred to my diagnosis as hyper POTS, but said I have Dysautonomia that is genetic and that I have way too much adrenaline. My heart rate was going up to 165 when walking, and my blood pressure was also high. I was taking Midodrine, Fludrocortisone, and salt pills before seeing my current Cardiologist, because the doctors I had been seeing were only familiar with orthostatic hypotension. I have had my blood pressure and heart rate drop a little low at times, but it is rare. I am taking Atenolol, Zoloft, and Klonopin, which has helped. My last treadmill stress test was normal, but before I changed medications my heart rate went up to 190 and my blood pressure was 200/100. I can’t have any caffeine, and have cut out sugar. I also can’t take decongestants. I have cut way back on sodium, because of high blood pressure and edema. I do drink a lot of fluids, including Powerade Zero. Exercise is important, but I am not supposed to do plyometrics. As I have read many times, each person is unique with their symptoms. I have had to play around with medications, exercise, diet, etc. to try to get my symptoms to the point of being manageable. I was in a car accident about two months ago, and it set me back. That is one of the times that I have had low blood pressure, and heart rate, but then it was right back up again.

I am occasionally woken up by severe colon pain that radiates down. It lasts about 45 minutes, and if I try to walk it off, my legs become very weak. I have also experienced sweats and lightheadedness with it. I think it is related to the Dysautonomia. I spoke to my Gastroenterologist about 20 years ago (I didn't have an ANS crash until two and a half years ago), and he said there is not much that can be done. So, I ride it out, and just fall asleep without knowing the pain has stopped. It is really strange. I have had a few times that it has happened during the day.

After I see the doctor in September, I will post any additional information I learn. I am hoping since the doctor specializes in Hypersomnia, he will also be familiar with Dysautonomia and how they relate. It looks like Flumazenil is still not available in pill form, or as a prescription, which is frustrating. Hopefully that will change soon, so that there is an option until a cure is found.

I am going to see Dr. David Rye at Emory in September for fatigue, weight gain, and excessive day time sleepiness. I am in a fog most days, and I fall asleep at work during the day. Driving can be a challenge, and it doesn't matter how much I sleep, it is never enough. I experience a drunken feeling after naps, which is very frustrating. I have had times when it feels like a chemical has been released from my brain that has a sedative effect on my. I found an article about a study that Dr. Rye worked on that may explain what I am experiencing; http://news.emory.edu/stories/2012/11/antidote_for_hypersomnia/campus.html. Are you taking any medications?