I am clueless

So I haven't posted in a few days. I have been so confused. My migraines are still daily and I don't know if they are related to the visual stuff or what. I know in Katy's case it was and they fixed it, WHY CAN'T I BE FIXED. I find out the results of my CT scan next week, but I am feeling down about that and sure they won't find anything. I can find lots of reasons to suggest I have something wrong with my lungs, or even my brain, but no one can find anything. Is anyone reading this?

pulmonary AV fistula

This is what they will be looking for via CT scan on Tuesday. I have researched this and am finding that CT scan is not a good way of finding this.... so I guess I will have to get a second opinion after this too?? Gosh, I just wish someone could figure this OUT!!!!!

10/20/10

It's actually 10/21/10, but I need to write about what happened later on yesterday after the procedure. Depression! It hit me so hard. I was so depressed that I sat there for hours telling myself I can't live anymore like this. I would never hurt myself, but I pretty much felt like death inside. I didn't get the answer I was looking for. The same diagnosis everyone else has with these symptoms... I DIDN't get. I spent countless hours with my face in the computer, ignoring my family researching for what??? To start back over.

After spending most of the day feeling that way, I decided I needed to pick up my son from day care. Once I seen his smiling face I knew what I needed to do. I have to keep going and have hope that the Dr's are going to figure this out. I have a precious son who needs me as a mommy for him, and I need him.

Bad News

So I have delayed posting anything on here because of the news I received after the TEE. The dr., who in my opinion thought nothing was wrong with me since I first met him, said a couple of bubbles made it across, HOWEVER he could not see a hole. So, he is sending me for a CT scan.... but get this... it's a Pulminary CT scan, which I don't understand... why isn't it of my heart??? How can everyone one I know with these symptoms have the hole and this guy tell me he can't find one. What makes it worse... is why don't they want to give me answers. He rushed out of the room so fast and when I called his office I had to wait for a call back, which still gave me no answers!!!

I am very upset and have been crying all morning. None of these people understand what I am going through and just how desperate I am to get an answer. Why is he pushing me off to someone else. He told me since day 1 that he thought it was a lung problem.... and that is where he is pushing me off to. Well I am getting a second opinion. I will sort that out tomorrow though. I feel almost worse off then I was before the procedure... I guess because I was riding on that hope and now lost it. I feel like I should have my foot in my mouth. That I came this far for nothing. WHAT IS WRONG WITH ME????

So frustrated

So tomorrow is my procedure and I have had a lot of faith that I am going to find my answer with getting this TEE done. Katy even called me this afternoon for a bit of reassurance. Everything was fine with the confidence level that they would find something... until I talked to my father. He believes they are going to find NOTHING wrong with me. So this means my dear ol' dad doesn't think anything is wrong with me. I guess I have daily migraines and see stupid annoying flashy funky crap in my eyes and that there is nothing wrong with me. Well that does it.... I am just crazy I guess. Ship me off to the looney bin.

Dear Dad,

For the past 8 months I have been complaining about strange symptoms going on with my vision. I even mentioned daily headaches. I told you how frustrating it was that I had to go through this while trying to raise your new grandson. Do you remember when I told you I found more people like me with these symptoms and the one thing we had in common was a hole in the heart. Yup I remember, you told me the dr. said it was closed and I remember my first thought was, "what did that dr. know". I also told you how I found the ONE person in this world who had my exact same symptoms to the "T", had a hole in her heart as well and got the hole closed and she is now SYMPTOM FREE!!!! These are coincidences??? I think not!! This is factual evidence in my book and I haven't prayed every night for an answer which led me to finding Katy and actually having hope to just drop it because you said the Dr.s are going to find NOTHING. No! Tomorrow they will find something. I will not bask in the glory of telling you "You were wrong", I won't even say that to you. I just hope at that moment you will know and then be my dad. A dad who trusts in his daughter that something is wrong.

Any ways.... Good luck to me tomorrow.

TEE and scared

TEE is on Wednesday.... it's Monday right now and I am SCARED!!!! I am not afraid of the procedure, or the results.... I don't want to be sedated. I hate the feeling of any drug taking control of me!!!! Most people enjoy that kind of stuff.... not me!! I just want to fast forward this whole test so that it will be done and over with and I can have my results. I am just not looking forward to this thing. I wish there was an easier way around this. Most people think, oh it's nothing. You are talking to a girl who had 5 cavaties filled and NO anesthetic what so ever!!! Meanwhile my husband had his teeth cleaned and 2 receding areas fixed on his teeth and was HIGH as all get out!!! Bahhh!

Just thought I'd share this with everyone.. All of No people who read this haha.

Mitral Valve Prolapse?

A friend of mine said her Dr. found that she had some sort of MVP problem as well as a PFO. I am hoping I don't have this because I read where it is linked to Graves disease, which I have from my hyperthyroid. Uggggg I just want to find a cure!!!!

Doubts

So I wake up this morning with self doubt. I thought I was getting past this and had a lot of hope after talking with Katy and her having had ALL of my symptoms. It's easier for me to say, Yes this is related to a hole in my heart which I was born with. Yes the dr's were wrong that it closed 23 years ago and that I had symptoms my whole life, but never caught on. Yet all I can think about are the hundred + others who do not have migraines. Do they have a hole in their heart? I dunno! I recommend anyone with these symptoms to check that out. Demand a TEE immediately after all other tests most dr's order come back negative.

Why do I have this self doubt? Because Wednesday is my appointment and instead of focusing on the test coming back that there is a hole in my heart, a voice in my head is saying it won't be there. Why do I hurt myself like this? I guess because I feel like for the past year and 1/2 my life has been hell. From the moment my mother passed, then having my son and being left to raise him feeling this way. My hope had been smashed in to a billion tiny pieces and somehow I managed to collect a few pieces, but not all of them. I need to stay strong and have hope for a positive outcome. If I can't be strong, how can I convince others to stay strong when they are going through this???

Lord help me!

Migraines

So it seems my migraine pain is beginning to present itself daily! I was used to having a few days where it wasn't so bad, but now that seems to be in the past.

I know a lot of research on migraine sufferers shows that most patients get lesions on their brain cause from damage sustained from the actual migraine. Now I can't for the life me understand why they won't do a simple procedure on the heart when they know a lot of documentation points to relief of migraines. That would mean there was a greater chance of reducing migraine frequency, if not eliminating them all together. I have a theory about the after images I experience. I believe it is secondary to the migraines. I believe migraines have caused this and it may be in fact permanent. The reason I believe this is because most research with the disorder points to lesions on the brain. Katy experiences this phenomenon still. While she says it isn't anywhere near as much as she had it before, it is still occasionally there. Now could it be possible that these lesions can heal on their own?? Who knows? The fact that she said hers are now better is a good sign. I know she still experiences migraines at times, but she assures me they are not as frequent as the daily ones she used to have.

So how am I feeling today? Hopeful..... yet nervous. Isn't it strange to hear a person say "I hope they find a hole in my heart!" ?

That is exactly what I am hoping for. That is how I get to my next step. I hope that if and when I get readers... that they.... "You", will take some advice or get something out of this blog. While you may at this moment feel like you are all alone with this so called "Rare" disorder... you are not. My goal is to let that be known. My best advice is... Be your own advocate. Most dr's have no clue about what we experience, there fore it is in our best interest to research everything on our own and document everything. Stay strong!!

Update

So I went to the Cardiologist yesterday. It was a horrible experience getting there I can tell you that. My car wouldn't start at all, but a friend at work let me borrow hers and I got there on time. An hour later I have an appointment to get a TEE done next Wednesday. Now I asked the dr. if he was going to do a bubble study as well.... he reassured me that the Bubble study would be the next step if he found a hole first. I am trusting him with his decision as I know Katy got her bubble study done the first time around....

So here is what this TEE entails. I have to get there 30 minutes to an hour earlier... I don't know why!!! They are going to put an IV in me with medicine to help me relax.. and then put a camera down my throat. I AM SCARED CRAPLESS!!!!!! I am shaking inside thinking about them injecting me with drugs. I can't stand the stuff. BUT, I need an answer to this nightmare I am living and I would take 3 TEE's over this hell I am going through any day. I want my life back!

So, anyways.... visual crap is still 24-7, migraines are still pretty much 24-7. I am at work now.... I don't feel much of a headache, but I know it's there. Yesterdays was so bad and so that means of course I am so exhausted today. I woke up early for a blood test this morning. I can't wait to go home and go to sleep.

So let's see.... In 2 months it will have officially been 1 year that I have been dealing with the visual migraine aura's. 1 stinking year of hell that I could of been enjoying and celebrating the life of my son.... instead it's been a struggling keeping him priority #1 all while I constantly think about this crap. I have however been learning to ignore it for the most part. I REFUSE though, to live like this. I will find that answer. I will beat this!! And then I WILL find others who were in my same shoes, and I will help them to get back in to their old shoes. :) I promise!!!

I am excited.... this weekend My hubby and I are taking Kaiden to the annual pumpkin festival. Woo hoo, I am such a nerd. I love this time of year. I wish I were migraine free so I could enjoy it even more!!!! There is something about Fall.... even though I live in Florida and nothing changes but the temperature.... I can tell a difference with the smell. It smells fresh to me. The fall breeze brings new air..... maybe I am wrong... I dunno, but I LOVE IT!!!!!

Definite trigger

Fluorescent lights!!! So I had an inkling that my migraines came on full force when I was around fluorescent lighting...... however a weekend favorite of my husband and I is to frequent a local coral/fish store. I remember the last time we went I experienced a migraine, but since daily migraines are not unusual for me I wasn't too sure if it was the culprit. I wore my new sunglasses in, just in case, and I was doing good for a bit. Then I decided I could take them off for a few minutes. WRONG! I instantly felt the pain aching behind my eyes as if they were swelling. I put the glasses back on, but it didn't help...the cycle had begun. By the time we left the place my head was pounding and I was "Out of it". I deal with the head pain 24/7, but when I get the ocular migraines, it's a double whammy. I get off balance and things get really unfamiliar. Even certain words sound funny to me and don't make sense, almost like temporary amnesia.

I am still holding on to my hope that this all has something to do with a small hole in my heart. Why it's causing so much havoc on my nervous system.... I dunno. The way it was explained to me is the dirty blood that should be filter by the lungs goes straight to your brain with causes some sort of reaction. I am imagining inflammation which would explain the grainy night vision, flashy stuff, tracers, and well the migraines. Still praying this is my answer!!!

Katy replied

She said she had the after images at varying degrees all the time. She said she still gets them, but not as bad and they usually aren't there. It has something to do with light. I sooo hope this heart thing is the problem!

Why do I look on the internet

I shouldn't even do anymore research on my symptoms until after I see the Dr. on Tuesday. (Yes, seeing a cardiologist on Tuesday).

Right now I feel like I am going to vomit. To look up a symptom and read RARE, unusual, uncommon... etc. it really drags your hope down. Katy has been sick and isn't able to answer my email. I just want to know if she experienced the after images (palinopsia) as well. It's the worst symptom for me. A lot of sites are suggesting I could of got this from an anti depressant, but the thing is.... I was off anti depressants when this first started. It got worse after I tried an anti depressant after the baby, but I still think it's related to having the baby.

All I know is this condition has made me feel so alone. I have never felt so alone in my whole life and I don't know how I am going to get through this. All I want is to be normal and enjoy my family. Why do doctors not know about this???

God, please let the hole in the heart be the reason I am experiencing these symptoms. Please have them fix it and my symptoms go away!!!!!!

I want my life back!

Dr.'s appt

I made a dr's appt for tomorrow. I am going to see my primary so I can get a referral to see a cardiologist. I just hope they listen to me! I put together a binder for them to read if they will take the time to do so...... God I hope so!!! I feel so close to getting fixed, yet so far away. That little nagging voice is still in my head saying you are stuck with this for life. I can't listen to it though... I just know I am going to beat this!!!!!

Fluorescent lighting!!!!!!!!

So I have noticed a pattern when it comes to me going in to grocery stores...... the lighting brings on ocular migraines for me. By the time I am walking out the door, I feel like I am in space or something. It's really hard to describe, but my eyes hurt and feel full. Everything around me looks strange.... and well..... it hurts to look at anything. I have been home now for almost 2 hours and I still hurt. The same thing happens to me in fish/coral stores. My husband got me in to the hobby with him and so we visit stores every weekend so you can count on me getting the migraines on the weekends too. We really don't use lighting at work.... we have a lot of natural lighting, but in my office it's so bright from the window that I can see every speck and floater in my eyes. I can see all the flashy crap and foreign stuff floating around.... or not floating around....

Uggggg. All I want is for this to go away. I would do almost anything to be normal again. I never thought anything could bring me down like this. I have gone through so much and to be tackled by this............. It sucks!!!!