Querier Posted April 12, 2014 Report Share Posted April 12, 2014 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. Quote Link to comment Share on other sites More sharing options...
Becia Posted April 12, 2014 Report Share Posted April 12, 2014 Howdy Marina! Welcome to the club here. Looks like you've been put through quite the ringer... hope you find help and support here. I know I have, this board is awesome Becia Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 13, 2014 Report Share Posted April 13, 2014 Welcome aboard. My son takes midodrine and it does take some time for the body to adjust.to this medication. Sounds like you have been through a long haul but have found a doctor that knows something about POTS. Feel free to ask questions and research the forum. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 13, 2014 Report Share Posted April 13, 2014 welcome. My daughter is on Midodrine among other stuff. But the Midodrine helps a lot.June Quote Link to comment Share on other sites More sharing options...
Querier Posted April 13, 2014 Author Report Share Posted April 13, 2014 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". Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 13, 2014 Report Share Posted April 13, 2014 Hi, Welcome to the forum! Quote Link to comment Share on other sites More sharing options...
corina Posted April 13, 2014 Report Share Posted April 13, 2014 Hi Marina, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
IceLizard Posted April 13, 2014 Report Share Posted April 13, 2014 Hi Querier,Thank you for sharing your story. You have been through a lot, glad you have found us. I hope you can keep from passing out at work. On this page are some suggestions for improving POTS symptoms, although they should work with low blood pressure episodes as well. If you scroll past the medications you will see diet and lifestyle tips that might help prevent you from passing out.http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helpsP.S. I have a medic alert bracelet that says I have POTS and syncope and "Do not make me sit or stand up before ready." This is because people would try to get me up too soon and I would pass out again and have convulsions. So far people have gotten the message.Best wishes! Quote Link to comment Share on other sites More sharing options...
Querier Posted April 13, 2014 Author Report Share Posted April 13, 2014 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 Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted April 14, 2014 Report Share Posted April 14, 2014 Hey, Merina! Your name is beautiful. Just wanted to say hi, and welcome to the forum! Quote Link to comment Share on other sites More sharing options...
Querier Posted April 14, 2014 Author Report Share Posted April 14, 2014 Thank you for the welcome BeforeTheMorning, Corina and Anastasia. I love your name Anastasia!! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.