My Illness, My Life, My Hope

My story begins at the tender age of 13. It was then that I began having strange dizzy spells. My family thought it was all a ploy to get attention. Sometimes I thought that too. It's hard to deal with something that's so scary and have no one believe you. My mom just thought it was blood sugar because I was a fat kid then, so she got me tested.....negative. I have been tested numerous times for everything under the sun since I was 13. I used to have a huge phobia of needles but through exposure therapy I overcame that by myself. I guess dad was right when he said the more you do something the less scary it seems. Now I'm a blood work pro! I walk in there and give them my left arm and tell them exactly where to *****. lol.

Over the course of the next 6 years things went exactly the same. No one knew what was going on and I had developed an abundance of weird symptoms. I had a number of unexplained body aches and joint pain. My mom attributed that to growng pains because I got so tall so fast (I'm 5' 10" btw). I agreed. It sucked but I went through physical therapy a couple of times and things seemed to be better. My dizzy spells continued only now a nerve pinch in my shoulder and some extremely painful calf cramping was added to the mix. So again I went from doctor to doctor trying to find some relief. It was exhausting. After a while you begin to think you are going crazy. You truly begin to believe that maybe what everyone says is true. Maybe I really am a hypochondriac. These feelings only get compounded when doctors tell you that it is all in your head. UGH! I hate that phrase!!

My first severe heart symptoms appeared in my senior year of high school. I had some severe palpitations and my heart would race while sitting at my desk. I had always been able to feel my heartbeat at almost all times so that was nothing new. Neither were the palpitations. This time was more severe though. It was enough to send up a red flag to me. I had some tests run and everything came back normal so once again I was told I was healthy. I felt like I was hitting my head against a brick wall. I had been tested for everything from diabetes and thyroid to rheumatoid arthritis and anemia. Turns out I am actually anemic but at the time I could control it with diet and I did. I just accepted the fact that I had some weird issues going on but I was fine according to doctors so I just moved on.

Although things had slowed down a bit at the end of high school, starting college brought a new and increasingly debilitating symptom: fatigue. Now I started college in the fall of 2008. I was fresh out of high school and ready to take on the world. Unfortunately I had put on some weight and was not feeling my very best. The good thing is my school had a gym. I used it quite often. My first semester of college I was unemployed and fully focused on my classes. My issue then was that I continually felt myself becoming more and more easily tired as the weeks passed by. I figured that it was just my weight gain and laziness so I tried to push through. I had no idea at the time what it really was.

The exhaustion got so bad that I was completely unable to get out of bed much less go to class. It took everything I had to just go take a shower. I figured I might have mono or something so I used all my strength to go downstairs to the health clinic. They gave me steroids and sent me home. They also took blood to do more blood work on me. I told you they have tested me more times than I can count.

I found myself becoming more and more introverted. I really pulled myself away from almost everyone. I didn't go out like most college kids and I didn't make friends. I had no energy for those kind of things. I felt horrible and spiraled into a depression of sorts. I felt like the only person I could count on was my mom......dad has always been here for me too don't get me wrong, but mom is my emotional anchor. She's my rock. She understands me on a level that no one else possibly can. I am truly blessed.

I ran out of funds for school that fall and moved home to Louisiana to live with my mom and dad. I hated my college at the time. I think what I hated was myself for not getting more involved. The odd thing was that instead of feeling worse about myself for moving home, I found myself losing weight and becoming involved around the house. My mood was still touch and go though. I would fly off the handle a lot. Living with me must have been hell. Mom had finally had enough and took me to the doctor. There I got my first diagnosis.

I had been having a lot of physical pain along with mood changes so my mom went with me for my biannual checkup with my doctor. He went over everything I was originally there for like my birth control and stuff and then I explained my pains to him. My mom decided to butt in and tell him about my mood changes and that she thought I may be suffering from depression (and I sure was glad she did in the long run). I was embarassed to talk about it. Depression carries a social stigma. Any depressed person must be crazy and suicidal; well that is just not the truth. My depression manifested itself as mood swings and extensive physical pain. It was a hard thing to come to grips with. I was embarassed to talk about it and I absolutely hated the fact that I had to be medicated. I almost didn't fill my prescription. I'm very glad I filled it though because anti-depressants brought me a lot of relief in terms of physical pain. I finally knew what it was like to be calm and level-headed. I now knew what normal felt like. I liked that feeling. I was happier and better able to handle the stress of life. It was very liberating.

The only thing is that my dizzy spells continued to occur. I just couldn't shake them no matter what. It was a constant battle with wondering if I was somehow causing them to happen. The thing is that they had been going on for 6 years by this time and I just kind of accepted them to a certain extent. The only thing was when it would happen in public. It could get embarrassing sometimes. I hate being that "sick" girl. As I got older, I learned not to care about my flaws and how other people viewed them. I gave my insecurities up. I let the small stuff go. I was maturing.

By the time my next diagnosis came I was 19. It was November of 2009 and I had some very bad sinus issues going on. I decided to take myself to the doctor. I went to this walk-in clinic in Jacksonville, AL. My usual doctor wasn't in that day so I saw someone else. I explained to him my nasal congestion and dizzy spells. I also explained some pain I'd been having in my feet. I had been working long hours as a waitress to make ends meet and after work, I could barely walk. Sometimes I'd have to climb up the stairs. It was very painful. I was a tad irritated when the doctor focused primarily on these dizzy spells I had been having since I was 13. He also asked me if I had heart palpitations and chest pain. I was like "is this guy psychic?!" How could he know that? He then told me I may have a mitral valve prolapse which could be causing my dizziness. He ordered an echocardiogram and quickly assessed my other issues and I went home. I didn't know what this meant. A heart issue? Me? Can this kill me? Will I need surgery one day? I was pretty scared so I did what I always do, I googled it.

I'm some what of a google queen. I use google for everything. I hate not knowing the answer to something so when a question arises, I'll google it later when I can. I googled Mitral Valve prolapse and found this site: http://www.mitralvalveprolapse.com/ I read over the information under the tab of "prolapse personality" and I just burst into tears. This explained me to a T. After reading over the symptoms as well I had no doubt in my mind that this is what I had. I just needed the echo to confirm. Little did I know that a mitral valve prolapse was just the tip of the iceberg for me.
Okay now getting my echo done was the most awesome thing I've personally experienced medically so far. It was amazing to see the blood pumping through my heart and to see all the valves opening and closing. It's hard to look at something like that and not believe in God. I find it very hard to believe that the complexities of the human body are all accidental like the big bang theory would suggest. That just seems crazy to me. Meh. To each their own.

It took about a month to get my results back due to Thanksgiving and Christmas and such being around that same time. I was diagnosed with a mild mitral valve prolapse. That is where my research begins. I looked up everything I possibly could about MVPS/D. I just knew that was what was going on. The feelings of relief were incredible. It was amazing that after 6 years and dozens upon dozens of doctor's visits, I finally had a diagnosis. I wasn't crazy. These symptoms weren't all in my head. I can't stress enough about how amazing that felt.

I researched natural methods to control my symptoms until I could get to the cardiologist. I cut back on caffeine and sugar. I tried to get in more exercise. I tried to get enough sleep and rest. Slowly but surely I started feeling a little bit better.
My cardiology appointment was in April of 2010. I went to a nice guy and he put me on 2.5mg of bystolic daily. It is a VERY low dose. I felt better though. I finally knew what normal felt like. I couldn't feel my heart beat all the time anymore. The flutters and skipped beats, they were gone. It was a good feeling.

I went to my GP after the cardiologist because I had moved. My GP put me on atenolol because the bystolic has no generic and therefore can get pricey. I didn't notice much difference at first. After a couple of months I started getting more tired. Chronic Fatigue had set in, and fast. I called my doctor and told him what was going on and he basically blew me off. He told me to continue taking it for a while and let him know if I still feel the same way in a couple of months. By this time it was early 2011 and I had had enough. I called my GP and he told me to just stop taking them. REALLY?! Was he trying to kill me? It was then that I decided to find another doctor. This was the second time he blew me off. He wasn't trying to help me at all. He was just trying to get me off of the phone. I'm sorry but I require a lot of medical attention and I need a doctor that takes an active role in my wellness.
And that brings me to today. I have good days and bad days. My bad days are especially bad when storms move through the area. I have officially been diagnosed with numerous medical conditions. Slowly but surely I am putting the pieces together. Still searching for a good dys doctor in my area. Got some good leads today.

Anyway, just wanted to share my story. I’m open to questions or just talking if you need support. The first few months of diagnosis are confusing and scary. Let me know if you need anything!

Wishing you more good days than bad,

-Dizzy Girl-
DizzyGirl27 DizzyGirl27
22-25, F
2 Responses Sep 12, 2012

Thank goodness that my son's aunt has this, so we don't have to go through all the knuckleheaded doctors like yours who just want to get you off the phone!

Dear Dizzy Girl,
It takes a lot of courage to tell your story. I am grateful you did. I am 43 and still trying to get answers. I have Ehlers Danlos Sydrome, Postural Orthostatic Tachycardia Syndrome and have been feeling rough. Dizziness is my new normal with bouts of almost passing out. Do you have tunnel vision with dizziness, blurred vision and tremors. I also have sleep sistubance and pain with an extreme startle response and tinnitus and headaches. Just wondering if you have experienced any of these symptoms. Blessings

I haven't been on here in forever. I actually JUST got dx with EDS last month. It explains so much! I get everything you described at some point or another. How are you handling your EDS? Who do you see for it? Like what kind of specialist?