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Querier

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About Querier

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  • Birthday 04/22/1955

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  1. Rissy2D I've had the insulin tolerance test. I have no pituitary function due to Sheehan's. I feel that anyone that is having trouble getting a diagnosis with adrenal symptoms should get this test done. It took me years and years to finally get diagnosed. It's really hard to find an Endo that understands or wants to take the time to work on pituitary issues. The idea of this test is that it puts the body under stress and all hormones should increase. I've had episodes of low blood sugar for so long that the test didn't bother me at all. They give you insulin to induce hypoglycemia but they watch you closely during the test.
  2. I take 2.5 mg 3 times a day. It helps me stay on my feet but I still get high heart rates.
  3. Thank you for the welcome BeforeTheMorning, Corina and Anastasia. I love your name Anastasia!!
  4. Galatea, I'm not sure that it's blood pooling when I lie down. Maybe it's something else. I've even slept with my feet propped up on 3 pillows and they are still hot. I bought some slippers that have pockets for cold packs and that helps for about 30 minutes and then the cold packs are warm. Must be some sort of autonomic thing. I've had problems with my body temperature too. Very annoying. I wish we could find the pill that could fix this!!
  5. Rachel, Thank you for sharing Tyler's story for us new people. He is so lucky to have you in his corner!! Marina
  6. Hollin, I have a medical alert bracelet for my adrenal insufficiency. I have found through my ambulance rides and ER visits that it really doesn't help. The EMT's nor the ER doctors seem to either know what to do or do not believe what it says. It is very frustrating. I think my biggest problem at work is that I don't want anyone to know when I am feeling bad so I try to push on. I need to learn to stop when I feel it happening. Easier said than done. I always think I can make it back to my desk if I hurry and that only makes things worse. I believe that when it is happening, my ability to reason is also compromised or I wouldn't keep doing it. Thank you for the diet and lifestyle tips. I need to make some changes and that is a good place to start. Marina
  7. Galatea, My feet do that too. It seems worse if I've been up and I'm feeling really tired. When I shower my feet turn very dark purple and my toenails are almost black. I never tried the cold tub but I will now. Seems that when I am tired and I can't sleep my feet get really hot too. I will try the cold water for this too, Marina
  8. I have cramps in my legs, feet and hands. It can get awful. Mine start with too much walking.
  9. Thank you Becia, Rachel and June. I'm reading the older posts. I have a lot of catching up to do. I can't offer much advice because I'm just learning but I can offer a "me too".
  10. Showering and drying my hair is my most hated activity also. I shower at night but not every night. I just sponge bathe when I'm too tired. I always have to rest after showering before I can dry my hair. I've always told the doctors how hard it is for me to raise my arms and do anything but they didn't think it was anything.
  11. Blurry vision is one of my big symptoms. My eyes check out fine. Some days are worse than others. I wake up at night with dry eyes. Not that I sleep much.
  12. I had gastric bypass in 1995 but I may have already had an autonomic problem.
  13. Hello Everyone, My name is Marina and I am new to this forum and this diagnosis. I'm not sure what form of Dysautonomia that I have. I was seeing a new cardiologist for symptoms related to diastolic heart failure and inappropriate tachycardia when he told me that it was a malfunction of my autonomic system. As I have read in many of your stories, I too have been to many doctors for many years with little help with my symptoms. I am trying Midorine to increase my blood pressure in hopes that it will keep my heart from going too fast. So far, what I've seen is that my blood pressure is higher but if I so much as walk around the house my heart rate jumps up and drives my blood pressure too high. I'm hoping that after I've acclimated to the Midorine this will not happen. I would like to give you all some of my history since it made me feel better to read your stories. I no longer feel so alone in my struggles. Hopefully, something in my story will help one of you in some way. I will start with the beginning. I was born with Beta Thalassemia Minor. This is an inherited blood trait from my Mediterranean heritage. My hemoglobin shows as anemic when I am not. Because of this through my teen years it was assumed that this is what made me get tired so easily and that there was nothing to be done about it. I hemorrhaged with the birth of my first son and as a result my pituitary was damaged. I'm now Pan Hypopituitary (no pituitary function) and I must supplement all of my hormones. I take Prednisone, Armour Thyroid and estrogen. I used to take growth hormone and testosterone but I can no longer afford them. I also took Florinef for years but had to stop due to edema. In May of 1995, I was more than 100 pounds overweight and I could not lose no matter what I tried. The doctors convinced me that unless I had gastric bypass surgery I would die. I already felt like I was dying so I had the surgery. Within six months, I lost 100 pounds. I still felt like I was dying. When I was fat, the doctors said I felt bad because I was too heavy and after the weight-loss surgery they said I felt bad because I had gastric bypass. I felt like I just couldn't win and just forced myself through my days and believed that this would be the rest of my life. In the summer of 2009, I lost my vision for four days. I had an MRI and was told that I had a small stroke. My vision recovered and no further testing was ordered. I was told to take a baby aspirin every day. In January of 2011, I came home from work even more tired than usual. I tried to rest like I always did but it just didn't help. My left arm was hurting so badly that I didn't think that I could stand it any longer and my chest was so tight I was struggling to breathe. At this point I called an ambulance and was taken to the hospital. I also had a fever of 105 and nothing the ER did brought it down until after about 24 hours it went down on its own. I spent a week in the hospital and had a full cardiac work-up. The cardiologist said it was not a heart attack. They didn't know what it was but my heart rate was high as was my blood pressure. This was strange to me since my whole life to this point my blood pressure was very low and my heart rate was normal. I was home from work for over a month trying to recover. One day I had to go to the office to get my FMLA paperwork and in the basement of the building I started feeling like I was going to pass out. I sat on the floor and an ambulance was called. When the EMT's got there they wanted me to get up onto the gurney. I explained that if I stood up, I would pass out. They wanted me to try anyway and you guessed it. I went out. This led to another week in the hospital with more testing but nothing showed up. The cardiologist implanted a Medtronic Reveal Heart Monitor. It's like a pacemaker but it only monitors and doesn't pace. It showed thousands of PAC's, PVC's and episodes of tachycardia but this doctor didn't think it was anything to worry about because it was sinus tachycardia. After a time, I felt able to go back to work. Not really feeling well but able to drag myself to work and then I would crash back at home. One day at work, I was looking at my computer and I stopped being able to focus on the screen. I couldn't focus on anything. Couldn't even make out my coworkers faces. This was really scary and they took me to the hospital where I was checked for another stroke. They called in a cardiologist who suggested a tilt table test. I had never had one or even heard of them. A week later I had the test. During the test I don't remember much beyond telling the cardiologist that I started to feel heavy. I apparently passed out and had a seizure. He called it a remarkable response and increased my Florinef from .1 mg a day to .3 mg a day. This is when the edema got so bad that I could hardly walk. It was my abdomen as well as my legs and feet. I weaned myself off of the Florinef. Quite fortunately for me, my company moved me to a larger city and I had to see a new cardiologist. This is where I found out that my left ventricle had impaired relaxation (diastolic heart failure) and that my problem is autonomic. Although, I hated getting this diagnosis at least I now understand everything that I've been feeling for so long. I have just about all the symptoms that all of you have. I think that this cardiologist actually understands the condition and may be able to help me get on with my life. He wanted to start with my worst symptom and of course I told him that I just can't pass out at work again or I may lose my job. That's were I am now. Taking Midorine in the hopes that I can remain upright at work. I still have all my other symptoms but this is a start. Of course there have been other doctors and other diagnosis along the way but these are the main points that led me here. Thank you for taking the time to read my story.
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