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| information & support for patients and their families |
personal stories from people who have IST |
| melissa back to personal stories from people who have IST I have to tell you that after reading all of the stories in this forum (the message board), I feel like one of the lucky ones. My heart goes out to you all, especially those of you who are newly diagnosed or not yet diagnosed. I know just how frightening it is. In the fall of 2000, I began feeling poorly. My symptoms generally included chronic fatigue, lightheadedness and occasionally nausea. As an otherwise healthy person who doesn't go to the doctor unless I'm bleeding, I waited until my annual physical in January 2001 to report the symptoms to my doctor. Luckily for me, she took me seriously and put me through a battery of tests, the results of which were all negative. Keep in mind that it never occurred to either of us that I could be suffering a heart condition. For as long as I could remember my resting heart rate was in the 90's, even with regular exercise so it didn't seem to be an issue. So I quit bugging her and went on with my life until my symptoms began to get worse. By March I had been having some very disturbing episodes that really had me freaking out. Sitting at a table eating lunch one day I suddenly got hot, flushed, dizzy, very nauseous and almost passed out :-[ A week later, I was standing in a hallway talking to my boss and got so dizzy I had to grab the wall to keep from falling. This went on for weeks. Then one day, while sitting at my desk typing, I started to feel hot and dizzy again. I noticed that the back of my neck felt very stiff so, thinking that I was just stressed, I started to massage my neck. Then it suddenly occurred to me that I had never checked my pulse when I was having these symptoms. So I did. I couldn't believe it ??? I new it wasn't normal for your pulse to be over 140 bpm while sitting still. I was curious, so after 5 minutes of sitting with my eyes closed relaxing the best I could, I checked it again- 135 bpm. I calmly stood straight up- 150 bpm. I walked ten steps- 160 bpm. I sat back down- 140 bpm. Like I said, this is not normal. So I called my doctor's office. I was remarkably calm until the nurse told me to get to an emergency room as soon as possible :o That is where my 5-month journey to a diagnosis of IST began. After several doctors and countless tests that told them that there was nothing "wrong" with my heart, I finally got lucky. I was scheduled to see a new cardiologist, but on the day of the appointment, he had an emergency surgery. The doctor that filled in for him recognized my symptoms immediately. He had been treating other IST patients for years ;D Those were the sweetest words I had heard in months. I new that a proper diagnosis meant that I could finally get the proper treatment 8-) Every moment of my life is affected by my IST. It is triggered solely by physical activity. I can actually lower my heart rate with slower breathing or raise it by blinking my eyes. It has slowed down my daily pace quite a bit and I have learned to adjust my expectations of myself due to my new physical limitations. I said at the beginning that I feel like one of the lucky ones. Although IST had forced me to change my lifestyle, it has not taken my lifestyle away from me. My case is not debilitating. I can still work, take my dog for short walks, and work in my garden. I just don't get in a hurry about any of it. I know this is lengthy, but if it helps someone else out there who is scared and questioning their sanity, it will be worth it. My best to you all Melissa |
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| The content of this page was last modified at 17:01 GMT Saturday 22 August 2004 |
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