Chrissy

So we did the Upper GI scope, which surprised everyone by coming back normal. Then we did a HIDA scan which showed my gallbladder functioning at 95%, nearly remarkable. The latest test was a CT of my abdomin. I had the test last Tuesday, went and picked up the results Wednesday. It came back normal. So now I'm waiting for the doctor to call and tell what we do next. Its been a week and he hasn't even called to tell me it came back normal. I'm so frustrated.

Ever since the beginning of my autonomic journey 5 years ago, my bowels have swung from going a week without a movement to living in the bathroom. My gastro doctor said I had irritable bowel syndrome. Then I started having no urge and standing up and messed myself. I mentioned it to my doctor and he didn't pay much notice. Then a year ago I was worked up for Crohns, not the issue, we discussed inflammatory bowel disease without damage. Now I recently went in to see him and he claims its constipation. That going a week without a bm, it gets pact up and when it wants to come out there is no stopping it. Sounded weird to me. My mom has constipation that causes frequent loose stools but she has never messed herself. So he told me to take Myrilax daily and if I'm not going every day than twice a day. So I did this and I was constantly feeling like I was not gonna make it to the bathroom. So I backed off to once a day and now I'm thinking of getting off it completely. I mentioned that it might just be the dysautonomia and he said no way. What do you think? Does anyone else have this problem?

So after 2 weeks of being ignored by my GI doctor and 2 useless trips to the ER for Severe stomach pain, my GI ordered an upper GI scope. At the appointment he half listened to where the pain was and pushed on my stomach. He said, "Yep there's definitely something wrong with the stomach." So we scheduled the scope, which was today. While waiting for him to show up we talked to the nurse, because we felt he was overlooking something. I have excrusiating near constant pain below my right rib. The nurse asked about my gallbladder. At this point my mom and I were convinced we were putting our foot down and gonna have him admit me to the hospital and get to the bottom of this. After the scope which we were all surprised he didn't find anything wrong with my stomach, not even the usual undigested food from my gastroparesis, we discussed the next step. We mentioned that I have a fatty liver and that I the possibility of gallbladder issues. He said well lets test the gallbladder since we can fix that. So in two days I go to have a gamma test done. Then they rushed me out of recovery before I had a chance to get the anestesia out of my system. I was probably there 30 minutes after my scope was done before they were sending me home. I was so dizzy I could barely walk and I'm used to being dizzy so...I'm so fed up with the medical community and their lack of concern or compassion. I know I'm complicated, but I'm still a human being in major pain!

I went to KY and saw the doctor. He did 24 hr urine and saliva tests, mri of head and ct of abdomin. The pit tumor wasn't obvious but there was a shadow. He's hoping doctor McC does a IPSS, draw blood going into and out of the pit to make sure that is the problem.

I recently got diagnosed with cushings, waiting to get into md anderson for a pit surgery.

When a doctor can't explain my symptoms they call me complicated. I know I'm complicated, I'm not looking for a miracle cure I'm looking for some relief from some disturbing symptoms. The lastest episode: Last thursday I woke up with nausea and dry heaved a few times I assumed it was my turn to get the flu my dad was getting over so I went back to bed. I sipped some water throughout the day which made me more nauseous and caused stomach pain. The shredding kind of pain. I was also dizzy so I stayed in bed. Finally I got up to go to the bathroom and nearly passed out. My b/p dropped to 71/53 so I called my cardio who said to go to the ER. After 4 hours waiting they finally called me back. My b/p stabalized so they focused on the nausea and stomach pain. They did an x-ray and and ultrasound and came back with no clue. They said my stomach was swollen but that was probably the gastroparesis I've been dealing with for years now. So they sent me home with anti-inflammatories and loritab, and said to call my gastro doctor. I left a message with his nurse cause he was out of the office for mardi gras holiday. So I took the anti-inflammatory as often as possible and one or two loritabs. No relief! My doctor called back yesterday saying he thought I was impacted and that he was ordering the tests from the er and would call me back. Well last night I ended up in the er again because I woke up screaming in pain. They said that my labs look good and that if I do have gastroparesis than taking anti inflammatories and loritab will make it worse. And they acted like I was looking for a miracle cure for gastroparesis and used the word "complicated case" like 10 times in an hour visit. Then they sent me home with a new antacid to replace my prilosec. My mom called my gastro doctor and left a message. No reply yet. If I end up in the ER one more time, I swear I'm refusing to come home. Something is wrong and someone needs to make this pain stop.

I usually get an echo done on my yearly visit to my dysautonomia doctor, but they will tell you they are not cardiologists. My cardiologist has done a pulmonary stress test, experimental thing that takes the place of an angio, and maybe an ekg. I've had plenty of ekg's done over the years. I called my cardio, when my heart rate dropped into the 50's and requested a holter moniter. He said there was no need for a holter moniter if I know I have low heart rate. Then told me to ween down the nadolol to see if my heart rate goes back up. He doesn't know what to do with me.

So I've been having pulmonary issues since this all started in Dec. 2004, but they did the chest xrays and called my symptoms panic attacks. Then when I got dx'd with dysautonomia I just assumed the pulmonary symptoms fell under that category, so I learned to deal. Then in August 2005 when they were checking to see how advanced my dysautonomia was, they did a simple pulmonary function test which I guess came back normal. So I lived with it and tried to ignore it. But it's been getting worse and everyone I talk to says it sounds like asthma. Finally I had enough and sunday I went to the ER. Their first thought it was congestive heart failure, which never crossed my mind. They did two nebulizer treatments which I'm told is not normal, then eventually discharged me with chronic bronchitis and stressed to call my cardiologist and pulmonologist as soon as they open in the morning. So I did. The cardiologist was absolutely no help. The pulmonologist called today to squeeze me into a cancelled appointment, so I went. The doctor said it is very unlikely that I have asthma because you don't just develop that at 22 years old and I don't have family history of it. Then he said there's a small chance it's acid splashing on my vocal cords which would cause similar symptoms. He's gonna do a complete pulmonary work up and if that comes back normal then he'll order a study to check my vocal cords for inflamation or something. But he is pretty positive it is gonna come back normal and that my symptoms are dysautonomia related. Then my dysautonomia doctor said in her opinion dysautonomia is not progressive and that if I think it is then she can refer me to vanderbilt to have them study my symptoms. All I know is I hope it's asthma, at least there is a treatment plan for that.

Due to endocrine issues and the increase in weight, my b/p has been running in the prehypertensive - stage 1 hypertensive range. With the low heart rate, its running 102/60 to 119/70, I guess that would be considered a normal b/p. I wore a holter moniter 5 years ago before I got diagnosed the hr ranged from 48-150 and the conclusion was a "rare ventricular ectopy" or something like that. I asked my current cardio to do a holter and his nurse said "we know your hr is in the 50's and a that is all a holter will tell us, so there is no need to do one." I personally disagree. My hr may spent alot of time in the 50's but it still spikes into the 100's too. And webmd.com made it sound like a holter is a portible ekg. I think its important to see how my heart is responding to the highs and lows. As for potassium, mine is borderline high.

Okay, I read webmd.com about bradycardia. It caught my eye that high potassium can trigger an episode. I just picked up my labs ordered by my gastro doctor, which I had to request be run. My potassium was bordeline high. He hasn't been able to find the results to let me know his impression, but I remember when I first got diagnosed they said high salt, low potassium or something like that. I also seem to get sick when I eat bananas, but my sister-in-law was pushing me to eat a healthy diet and quit skipping meals. She couldn't understand why bananas would make me so sick so she told me to try one and let her know how I react. Sick again, so....But I'm pretty sure they ran my electrolytes in the ER and my potassium went down some. Could this be causing my problems or at least contributing?

My local cardiologist really doesn't understand me. It kind of irritated me that I called and left a message as soon as they opened at 8am and didn't hear anything all day. So at 4 I left a message to verify they got the message. Finally around 5:30 they called. I just emailed my dysautonomia doctor, but she's two states away and not a cardiologist. But she's the one who put me on the nadolol, so....I'm so frustrated and tired. I'll keep you informed.

Just got off the phone with my cardiologist's nurse. They want to lower my nadolol to a half in the morning and a whole at night. I don't believe its my nadolol that is the problem, so to prove a point I'm thinking cold turkey off the nadolol and see if my heart rate goes up and if it doesn't..... She also said that 50 is not low and that unless I'm passing out from it being that low there shouldn't be a problem. I'd like to see her go through one day of what I'm feeling right now. I'm so tired I can't even get food down. Then it doesn't help I'm dealing with pulmonary issues and my oxygen is only 92-94. I'm so frustrated. Please advise.

I went to the ER tonight cause I was at my wits end. They suspected congestive heart failure and a few pulmonary things. They did a chest x-ray, blood work, and an ekg. Then came in and did a nebulizer treatment. Barely 30 minutes later they came and did another nebulizer treatment. I was discharged with chronic bronchitis. They gave me a script for an inhaler and a 5 day antibiotic. I'm calling my pulmonologist in the morning to move up my appointment. Also calling my cardio to check my low heart rate. Four hours in the ER and I don't feel any better, but at least now I know its not in my head. Best ER visit in 5 years. I finally found someone who was genuinely concerned and listened to me.

I've had shortness of breath, chest tightness, "glue in lungs", and other respiratory symptoms since all this mess started 5 years ago, but I just chalked it up to Pots. Quite often when I go to doctors appointments they ask if I have allergies after listening to my lungs, I always wondered why. Then in February 2008 while in the ER they found a "small ? mass on the midlung" which the radiology report didn't mention and when I followed up in 6 months it wasn't mentioned. So I began having more frequent issues and a "ice in my lungs" sensation upon waking and "fluid in my lungs" throughout the day. Finally I scheduled an appointment with a pulmonologist for Sept. 2, but I'm not sure I'm gonna make it til then. Calling tomorrow to see about moving it up. It was suggested to me that I might have asthma and to definitely try to move the appointment up. Does anyone else have asthma? How does it affect your pots symptoms? I'm currently dealing with an unusually low heart rate and severe fatigue. Is this related or something I should call my local cardio about? My pots specialist suggested lowering my Nadolol dosage, but she doesn't know about the respiratory symptoms. Any advice would be appreciated.

I've been having relatively low heart rate readings, at least for me. I used to register between 90 and 150, now I spend most of the time in the 50s and up to 116. When I emailed my dysautonomia doctor, she said that that could be a side effect of Nadolol and asked if I was experiencing dizziness and shortness of breath. No more than normal. I'm also experiencing "ice in my lungs", fatigue, cough, and tightness. But I have an appointment with a pulmonologist in September to follow up on "a small ? mass on the mid lung". Could the low hr be contributing to the lung issues or is the lung issues causing the low hr? I don't want to mess with my meds unless I'm sure that's the problem, but I'm tired of feeling like this. Any advice?

I too have gastroparesis, esophageal spasms, heart burn, colitis symptoms... I'm broke from my mouth to my rear. I'm also anemic and used to take slow fe, but it wasn't regulating so now I'm on FE C (iron with vitamin C for absorbtion.) not sure if its helping yet. As for the small meals throughout the day, I too was hesitant. I'm never hungry and how do you eat that much? But my sister-in-law helped me get on a schedule. When I first wake up I'm supposed to drink an ensure and eat an orange, banana, or grapefruit. Then at 10 or 11 another fruit. Noon is a small lunch. 2 or 3 is a fruit. 6 is dinner. Then a snack before bed. Basically it is the equivalent of eating one meal scattered out all day. It really helps.

I was diagnosed with dysautonomia and POTS 4 1/2 years ago. We think it was caused by a case of mono when I was 11, I'm 21 now. The weird thing is my mom is starting to display POTS symptoms, hr over 120 or jumping 30 beats in 10 minutes and shortness of breath. She's over weight and kept chalking symptoms to being over weight, but when she borrowed my heart rate watch and noticed her hr went to 145 with mild exertion. She has alot of risk factors for heart disease so she went to the er last night and they did blood work, ekg, chest x-ray, and ct of the chest and sent her home. She's planning on having a stress test done. She thinks because she has little to no autonomic symptoms, she can't have POTS.

I'm not exactly sure why they prescribed the nadolol, but my hr registers lower now, doesn't feel like it though. Blood pressure was low before, then on nadolol it goes from low to high to low, now it spends most of its time in the prehypertensive range or stage 1 hypertensive. It still bottoms out on occasion though. They think the increased blood pressure is due to the endocrine problems and once that is fixed I'll go back to having low blood pressure.

I take Nadolol twice a day for my heart, I used to be on Proamatine, but my current dr. was concerned that my h/r was between 130-150. It still feels that high, but the moniters register it being between 90-120. Not sure if its the nadolol or the endocrine issues making my numbers read funny. I've been on many dysautonomia websites and none of them mention nadolol as being a recommended med. I also take reglan, prilosec, and xanex for GI problems and FeC for iron. OTC are coq10, omega 3, and folic acid.

I often am unable to get my words out of my mouth when talking even when I know exactly what I'm trying to say. I do alot of "and ums" or "likes", but what's worse is now I'm to a point where I blank completely and stand there try to find the words I'm trying to say, looking like an idiot or uneducated. I've always had a business mind and interest in business ventures, but its kind of hard to do when I can't even talk right. It's one thing for my body to give up on me or even that I have to do my thinking laying down. But I feel like I'm losing my mind completely. I'd hate to have to advertise my medical issues to everyone I meet in case I try to talk to them and look like an idiot. Is this due to the blood draining out of the head with POTS or do I need to go back to the neurologist and get reevaluated. I just had a neuropsych test in Nov. but I wasn't experiencing this at least not this bad.

I spend alot of time reclined or laying down at home, but when I have to go somewhere that I need to sit the adrenaline usually kicks in and allows me to do so. Not anymore. I can't go to church, business converences, even dinner out is a struggle. I'm not sure if its the heart symptoms alone or in combination with the increasing neuropathy issues. I'm beginning to get discouraged. Would anything help me be able to attend such events? I've thought of a reclining wheelchair, but not sure that would even help and I'm kinda trying to exhaust all other options before going there. I have a regular wheelchair that helps sometimes, but not with sitting for more than 90 minutes.

I went to the ER at the Heart Hospital, waste of time. At least they listened and didn't tell me it was in my head or I was bringing it on myself. They also didn't act like I'm too young to have so many things wrong with me like most er docs do. They did an EKG which came out normal. They also monitered me on the heart moniters and it surprised my mom as she watched the numbers but never dropped low enough to alert the dr. He asked if there was any specific test I wanted him to run or what I wanted him to do. I didn't know I just wanted the pain to decrease. It hasn't, but I go to Vandy in June and hopefully they can help. I'm going for endocrine/Cushings testing, but while they have me and being that the endocrine is affecting my POTS I hope they autonomic team will at least come talk to me.

Talking to my cardiologist, he thinks its GI pain. Not! I know when I'm having GI problems and that would only last a day or two and come and go. My issues are constant. My dysautonomia dr said it doesn't sound like it is POTS or Mitral valve related, rather a more cardiac issue. I plan to go to the ER at the Heart Hospital, but keep putting it off. I guess I'm hoping it passes with patience or scared of wasting my time and money to be blown off. I don't know what to do, I know something is wrong. Its like my heart is warn out from the ups and downs of my hr and b/p. Plus I've done a few crash diets in the past that might of done damage to my heart. I also found out that I've been having high cholesterol for a few years now that no one is treating. My mom is hoping I can wait and have Vandy check me from head to toe in June.

I have been experiencing SEVERE chest pain, kind of like I over exerted myself, for the past week or two. My heart rate is being "regulated" at 90 resting and up to 120, but lately it is between 50 and 80. Unlike normal POTS episodes it hurts the most when I'm laying down and just woke up. I've never felt this before and it is getting worse. I called my local cardiologist, but he doesn't get to the office for an hour and doesn't specialize in POTS. Is this POTS? I'm gonna send an email to my POTS specialist, but it takes them time to respond, and she's not a cardiologist. Any input to help me help them get on the right track to relieving this pain would be appreciated. I really don't want to go to the ER cause they always jump straight to panic attack. I know you can have panic attacks and not know it, but I seriously doubt I am. HELP.

The new Miley Cyrus song from the Hannah Montana Movie. Brings tears to my eyes.