Kawa_Kawa Posted April 10, 2006 Report Share Posted April 10, 2006 I found out two years ago I had POTS from a doctor at St.Jospeh's Heart Center in Atlanta. It was a long journey. I knew something was wrong, but I couldn't get anyone to believe me, except those that saw me pass out. It started when I was 14, and I passed out three times in the bathroom. This was right after Hurricane Andrew, and people thought it was because I was in shock of something so horrid. However, the symptoms still continued, through the years and became progressively worse. I was always tired. I was young and had no energy. Walking up the stairs became such a huge task and till this day always wears me out. Grocery shopping and walking around really affects me. This coming from a girl who use to take two martial arts a day and go to the gym. When I was in elementary, I couldn't run a long time without getting chest pains. Till oneday I was with my personal trainer, and I had chest pains that wouldn't go away. Somehow my heart had become enlarged. That's when this all started. When I wanted answers. I was at Crawford Long Hospital and they told me to see a Heart Doctor. I did, and found out I had a MVP with leakage in my chest. I started taking Toprol and after a month or so, I was getting better. The leakage was minimal. Then as years went by, I started feeling weak. I was battling anemia alot, ontop of all of this. I would pass out frequently. I went to many doctors who fought with me. Even went all the way to Chicago, to be observed for 7 days, only to find it was because the doctors had no idea what this was. The last time, I got lucky I guess. Dr. Cohen checked me out and pulled all records. Lo and behold, he finally diagnosed me with POTS. He also referred me to Vanderbuilt, but my appt. being three months down, I had left my job, and didn't have insurance. I missed my appt, and have been seeking help at this time. I finally have insurance, and found there are POTS doctors right here where I live. I have been on no treatment or medication for my heart or POTS. I'm very happy and excited that I may start taking care of this, but I feel damage has been done.Because I couldn't go earlier, my memory has suffered tremendously. People have noticed. I'm always tired, so I can't go out alot. Sometimes, I can feel my heart pushing the blood and trying so very hard to get it to the rest of my body, it hurts. It also scares me to think that when I pass out, oxygen may not get to my brain or the rest of my vital organs. So in long term I'm scared of what I may become if I don't take action now. No one really knew what I had till later. I never told.. and now people know, but don't really understand. It's hard for them. I feel like a fool sometimes, when I talk of it. There are so many symptoms, it's hard to relate to. It's like I can't fathom them, but I know each one I read, is something I'm all too familiar with. It's all what I've been going through. What saddens me the most is, I may never know how I got this or where my heart issues came from. I know so little about my father's side. I know of my mothers. I really want to know. The only thing I can think of, is that I was a very sick child. I had issues with strep throat alot, and did have mono in my life. The mono wasn't treated right away, and was treated at the absolute last minute, before I caught walking phnuemo. The doctor said if my mother had waited another day, that I'd be lucky to live. Sad, because I had a mother who didn't really care of my well-being as I do, and refused to believe I was sick alot of times. So I had to fight of infection on my own. I'm 27 going on 28, April 21st, and I miss the energy I had when I wasn't as sick. I miss myself. I want to desperately go back into martial arts, and I want to not feel tired, and when I stand up, I don't want to feel the way I do. I'm afraid that over time, all the pushing my heart is doing is going to weaken it. I didn't give up all those years of finding answers. I refused. I guess I had fought so long, that seeking treatment became an obstacle in itself for me because I'm scared. What if the meds or solutions don't work? What if I'm more damaged now and it's resistant? Did I harm myself more, because I couldn't get treatment earlier? I need some hope right now, from anyone. Has anything at all, worked on some degree to help you? Quote Link to comment Share on other sites More sharing options...
AJVDK Posted April 10, 2006 Report Share Posted April 10, 2006 Kawa,Welcome! I am sorry to hear you have had such a long road. I could understand alot of what you have been thought. I hope you are able to find a treatment that works for you. Sometimes it trail in error in finding the right meds but don't give up. There is so much hope out there. THere are many people here that have recovered for there POTS, some have to make lifestyle chenges, but I is worth it. I am in the middle of finding the right treatment that works for me. Somedays I get down about it, but I try to look on the bight side of things, it always could be worse. I have found to live in the day, when I feel good I go with it, and when I am down I try to rest and take it easy. I wish you the best of luck in trying to find the right treatment for youself. Keep us posted on what you find. Also again welcome, I am gald you are here! Amy Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 10, 2006 Report Share Posted April 10, 2006 HI,Welcome aboard. Here are a few links that would be very helpful for you:http://www.dinet.org/what_helps.htmhttp://www.dinet.org/what_to_avoid.htmhttp://dinet.ipbhost.com/index.php?showtopic=1954 Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 10, 2006 Report Share Posted April 10, 2006 Hi Kawa,I'm sorry you had a reason to find us but glad you did.WELCOME!Amber Quote Link to comment Share on other sites More sharing options...
Kawa_Kawa Posted April 10, 2006 Author Report Share Posted April 10, 2006 Thank you to everyone who has introduced themselves and said such nice thing. I made the appt's and I'm just very anxious I guess. It's actually going to happen, treatment that is. My appt's going to be on May 16 th, or June 20th. I have a vacation coming up in June, so I'll be all set to get underway. So some people have even managed to make POTS go away? From my understanding, I didn't think anyone could? That's wonderful. At least there is still hope. I'm ready to change. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted April 10, 2006 Report Share Posted April 10, 2006 Hi Kawa,Welcome. Glad to see you have dr.'s where you are who know about POTS and that you will now (hopefully) will get more information on it and treatment to help you feel better. Quote Link to comment Share on other sites More sharing options...
Be Still Posted April 11, 2006 Report Share Posted April 11, 2006 It's understandable that you could have sx that are so much a part of you that you're unaware of how abnormal they are. Some of us here have a hard time even describing what is so pervasive in our every day experience.I've read, recently, that people who are chronically ill ache for validation and strive to have others understand them. It's natural. We want to be known. It's also anxiety producing to be dismissed and discounted when you have haywire symptoms. It?s sad, but such an struggle can totally undermine your own perception of yourself, and cause you to distrust your own experience. Don?t do that anymore!"I miss me," is a very poignant and profound statement. We all grieve for the time when we didn?t measure our energy in tiny increments.It?s unfortunate that you didn?t get the care and attention that would have been expected with your childhood illnesses. Perhaps your heart conditions needed treatment in the past, but perhaps they would have developed as they are even with treatment. I was undiagnosed and untreated for a long time, and was concerned about this, but Dr. Grubb says there is no way to stop the progression of POTS. Symptoms can be treated and energy levels can improve.Improvement depends on many things, one of which is finding a medication protocol that works for you, settling down the GI tract, finding a balance between exercise and rest, getting high quality sleep, staying hydrated, taming migraines, etc.FYI, when you faint, and you are flat, your blood pressure normalizes, so blood gets to the brain and other parts of the body. Also, many of us became the first persons in our families to have POTS.You're on the right track. I applaud your desire to work hard to find a way to better health. You're doing well. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 7, 2006 Report Share Posted May 7, 2006 Hi Kawa!Welcome. I am just recovering from yet another attempt at working so I am catching up with threads and yours struck something in me...so I respond now. Yes, it is a journey! Yes, you need to be careful and proactive and yes, there will be better times if you learn how to manage your particular type of POTS!I have been in the depths of a potshole and unable to even turn a doorknob and have gone from there to now, where I can get up and within two to three hours get ready to go try to work outside the home!back to some of your concerns,I too worried if I had done some damage in the years between my initial symptoms and finally the dx. I have no question that there were times I pushed my physical body way too far and did do damage...but the tests at that time did not make it easy for doctors or me to know how to treat me.I think it is not helpful to fret over what we can't undo so my suggestion is to be very careful from now on. Here is an example of some damage I did since my doctors thought I was maybe just "de-conditioned". I loved to garden and although I was feeling weak physically, I mentally and emotionally felt excited about working in my small garden. It was this time of year, early May, and I wanted to set up a new lovely little flower garden. So, I moved cobblestones, turned over dirt and planted hundreds of little seedlings over one weekend several years ago. I was figuring that this activity would help me "build up" even though I KNEW I was not sedentary or out of shape....anyway, at the end of the day, I picked up a flower pot and felt something in my abdomen give a tug of a pulling feeling.....I learned later on that my pelvic muscle separated and I went into pelvic prolapse over the next few days....It took a major 7 hours of surgery to repair me......another story... the important thing to learn though is to listen to your own intuition and not do anything that makes you fatigued. We do know if we are out of shape or not! We do know our bodies better than anyone else! Don't let any doctor tell you otherwise!I do believe that when it comes to dysautonomias, the "professionals" just haven't found the right tools to conduct the right test to figure some of the funky things we have.I am glad you will be having more testing and will hopefully get many answers that will assist you in managing a best for you quality of life.If you haven't gone through the past posts, try to do so before you go for your testing.Be prepared, be proactive and come back and tell us how you are doing.best regards, tearose Quote Link to comment Share on other sites More sharing options...
Sunfish Posted May 7, 2006 Report Share Posted May 7, 2006 hi kawa -i just wanted to add my (late) welcome. sorry that you have reason to be here but glad you found us. melissa Quote Link to comment Share on other sites More sharing options...
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