Working On Getting Diagnosed

[sarct]

Hi, everyone. My name is Christina, and I cannot even express how happy I am to have found a place where people are going through the things I have been experiencing. I mean, I wish none of you were, but to know I am not alone and a freak is really uplifting for me.

I have been having fainting/lightheaded spells ever since I was like 8 years old. My nickname was DD short ofr Dizzy and then my last name. I have fallen down stairs, and have hit my head so many times.

When I was around 17 years old my life came to a stand still, basically. I became soooo lethargic. I would come home from school and sleep till 7:00, be up for a couple hours and then go to sleep till the next morning. I would go to the doctor, but they never found anything wrong with me. They just said that I have low b/p. and to drink water and eat a lot of salt.

So I have been living my life in this limbo stage where every morning I wake up hoping I will be productive with my day, but then I quickly realize that this day will just be like all the others. I am tired, and lethargic, and I don't have the desire to do anything but lay on my couch.

Oh, and I would have these spells that would cause all the people around me to speculate that I was trying to get attention. I am always complaining about something being wrong. My husband has often asked why I can't just be more productive with my day in the past.

I gained 140lbs leading a sedentary life. Oddly enough I stopped with my episodes of being light headed and fainting. It would only happen once in a while. I thought I outgrew. I still lived my life just trying to get through each day though. I just resigned myself to the fact that I am just a lazy person.

Then I decided I would lose weight. I have a child, and I want another. my spouse deserves to be married to a healthy woman. I lost all my weight and I began passing out...hard. I can no longer stand up w/o an episode now, I am having weird things happen with them that never did before. They have crippled my life even more than it was previously. I had to teach my 4 year old to dial 911 in case I fall and hit my head. I was suppose to lose weight to feel better and now I have exchanged one problem for another.

Before it was just something that I did. Now my whole family is concerned and my poor hubby is doing all he can to support me, but is worried too.

I don't know a lot of the terms used on this board yet, and I am being told I have orthostatic hypotension. They put me on 5mg of midodrine 2 times a day and 50 mg of zoloft once a day.

The midodrine does nothing but make my head tingle, really. It doesn't aide me in anyway, so I stopped taking it. The zoloft has curbed a lot of my episodes but I still have them. Most of the time I can continue functioning through them. Like I feel it in my head, but my body is not being impaired by them like normal.

I still have not been told why I have this problem. what causes it, how to live with it. I want to have another baby, but I don't know if it would be a responsible thing to do. What if I have an episode while carrying a baby and I fall?

I am trying so hard to think positively and try to plan my life out, but I just feel so impeded.

I was wondeirng if anyone had some advice for me? I live in Michigan and I am going through a cardiologist at beaumont and a neaurologist. I was wondeirng if anyone knew of a doctor here that specializes in this stuff at all?

I know this is long winded. I have so many questions, and I just don't know how to frame them yet.

From reading here I know people are worse off than me, and I feel guilty complaining about my problems. I have a great family who is behind me and I have a wonderful child. I just feel like I am letting down those around me for being like this all the time. I have this life that i want to live, and the the life I am living now is nothing resembling what I want.

I am glad I have a diagnoses right now, though. I am glad to know I am not lazy, nor a hypochondriact (sp). I have had friends in the past tell me I was mentally ill and causing these things to happen to me. That I needed to see a therapist. I have such a stigma surrounding me. I even fear going to the doctor anymore, because I am afraid they are going to think I am just a complainer.

Thanks for getting through all this if you did. I am not usually so long winded, but I have so much to say about this. I never get to express it, because I try to keep this to myself, but I just want to say thank you for having this forum so I can learn about my condition. I never knew, in a million years, that I would ever find people going through what I go through.

[corina]

hi sarct!

welcome around. and guess what: there are a lot of people like you around here!!!! so do feel free to talk and ask as much as you like because, although there is a wide variety between us, there are always people who experience exactly the same and are willing to listen and to help!

also there is so much information at this board, take the time to read, that will help you as well, and what i personally like most: we are from all over hte world!!!

so welcome again, i am sure you found a great place to hang around!!!

take care,

corina

[Ernie]

Hi,

Welcome to our universe!

You can take a look at the different links. They are very informative.

http://dinet.ipbhost.com/index.php?showtopic=1954

[morgan617]

Welcome and don't feel like the Lone Ranger! Ernie put up the link for all kinds of info. This is a wonderful community of people who understand the "crazy" thing. You may have to go through several doctors to find one willing to work with with your disorder. It will pretty much be up to you to learn all you can and help them in most cases.

But you are NOT crazy, just sick with a pretty rare disorder that most people do not understand. Don't give up and there are many here willing to help and offer support...morgan

[gelann]

Hi Christina,

I just wanted to mention that my daughter sees Dr. Felix Rogers in Trenton, MI. He is a cardiologist and has helped her quite a bit. He also put her on midodrine but it helps her. Good luck to you.

[ajw4790]

Hi! Welcome! I see a lot of my story in yours as well. It can be kinda spooky sometimes to see a lot of the similarities of what I have went through. Esp. the symptoms at a young age and symptoms during high school. I also had the same experience with midodrine. I saw no difference, just way to much scalp tingling that would shoot down my face as well.

I hope you are able to find some answers and support here!