So my friend just got back from the specialist in Boston. She had an eeg done which showed a lot of visual sensory overload in her brain. He says he sees this in most of his HPPD patients, (drug induced visuals).
I feel like she was the only one on my side with the theory that the hole is the problem. Now I feel like this Dr. has told her it's a chemical reaction in her brain caused by drug use.
I know that a PFO can allow bits of dirty blood filled with neurons to travel to the brain... This can cause migraine. However after endless searches for others who have had this and had the closure, I've only found Katy. Everything matches, but for some reason I keep having doubt about it helping me. I wish I could just get my insurance already so I can go see a dr. I want my life back. I have already isolated myself from the board with others who have these symptoms because no one liked to listen to the theory. Now I am hoping I don't lose the person who was on my side with this theory. She told me today that even though Katy had sucessful treatment and cure of her symptoms, that is basically wasn't enough to convince her.
I guess it's just me.... doing it on my own now. Figuring this out and finding the light at the end of the tunnel.
Thursday, September 30, 2010
Who I used to be.....
I thought I'd let you know the person I was before migraines took over my life.
On any given day before Octoberish of 2006 I would plan my day as follows:
9:30-5:30 go to work, check weather for waves, if waves go skimming, if no waves work out for 2 hours, get home by 8ish from the gym, shower, sleep start all over again.
Weekends were devoted solely to skimming at the beach. From noon to sun down I was at the beach skimming. I might not of been the best one out there, but I was the best GIRL out there and I did what I loved. I didn't waste a minute of my time... I did what I LIVED to do and LOVED to do.
Migraines have robbed me of this..... but I will find my way out of it!
On any given day before Octoberish of 2006 I would plan my day as follows:
9:30-5:30 go to work, check weather for waves, if waves go skimming, if no waves work out for 2 hours, get home by 8ish from the gym, shower, sleep start all over again.
Weekends were devoted solely to skimming at the beach. From noon to sun down I was at the beach skimming. I might not of been the best one out there, but I was the best GIRL out there and I did what I loved. I didn't waste a minute of my time... I did what I LIVED to do and LOVED to do.
Migraines have robbed me of this..... but I will find my way out of it!
Thursday
Today I woke up for the first time and didn't instantly think of impending doom. I thought about not wanting to wake up so early, my son crying and that it was Thursday. Those are 3 dang good reasons to celebrate!! I am alive, I have a healthy son and 1 more day until Friday! Woohoo! It's not always about me! I see that.... the world keeps going no matter what your struggle. You can stand still and view the world in still shots or you can get moving, find an answer all while you truly live life!!! Today might not offer me everything I've dreamed of.... heck I might have the worst day I've had in a long time... but, I am alive, I have a son..... and it's Thursday.
Wednesday, September 29, 2010
Conversations with dad
Well I know I posted that the hole in my heart was found at birth.... I was wrong. I was having a conversation with my dad last night about it being the cause of my problems. He said, "I remember all of that. I used to take you out and let you sit on my lap and steer my car because I thought I was going to lose you!" My first thought..... or should I say emotion.... was to cry, all while asking how old I was and how the procedure to find the hole and determine it was sealed went. He said I was around 5 years old and they found it by Xray and determined it closed the same way.
The reason I cried was not because of the age or even because text book says PFO's close after 2 years of age. I cried because my earliest memory I have as a child is sitting on my fathers lap and steering his old Maverick. I remember the very first time I cried. I was so afraid, but my dad let go of the wheel and told me I had to. So I did.... and from there on out I always asked to steer anywhere we went. Of course it was from the left side of the vehicle in the passenger seat hahaha. I remember though... and it broke my heart to hear him say he thought he was going to lose me.
It's a strange thing, this "temporary disorder"....
For almost 4 straight years I have lost the ability to truly feel connected to ANYTHING or ANYONE. Depersonalization is a Beeyotch! I left someone I truly loved, at the time, because I could no longer feel compasion... I could only feel desire.... so I cheated on him, watched him cry and beg for me to stay and then I left him. Yes, I miss him all the time, but there is a reason for everything. We actually became best friends and I value that friendship because I knew he would remain in my life no matter what.. But I was wrong again. Love, it's a funny thing and while I am now married and I have a child and I know I love them both.... I can't wait to really feel TRUE love when this whole thing is over with. I can't wait to get my life back together.
The one thing that I wish more than anything.... was that I could of really felt things before my mom passed. I feel like I didn't give her a fair chance in my life since all of this happened. Depersonalization will ISOLATE you from everything and everyone. They can still be present in your life...,but mentally, you won't be in theirs!!
I love you mom!
The reason I cried was not because of the age or even because text book says PFO's close after 2 years of age. I cried because my earliest memory I have as a child is sitting on my fathers lap and steering his old Maverick. I remember the very first time I cried. I was so afraid, but my dad let go of the wheel and told me I had to. So I did.... and from there on out I always asked to steer anywhere we went. Of course it was from the left side of the vehicle in the passenger seat hahaha. I remember though... and it broke my heart to hear him say he thought he was going to lose me.
It's a strange thing, this "temporary disorder"....
For almost 4 straight years I have lost the ability to truly feel connected to ANYTHING or ANYONE. Depersonalization is a Beeyotch! I left someone I truly loved, at the time, because I could no longer feel compasion... I could only feel desire.... so I cheated on him, watched him cry and beg for me to stay and then I left him. Yes, I miss him all the time, but there is a reason for everything. We actually became best friends and I value that friendship because I knew he would remain in my life no matter what.. But I was wrong again. Love, it's a funny thing and while I am now married and I have a child and I know I love them both.... I can't wait to really feel TRUE love when this whole thing is over with. I can't wait to get my life back together.
The one thing that I wish more than anything.... was that I could of really felt things before my mom passed. I feel like I didn't give her a fair chance in my life since all of this happened. Depersonalization will ISOLATE you from everything and everyone. They can still be present in your life...,but mentally, you won't be in theirs!!
I love you mom!
Feeling doubtful
I just thought I'd post this sporadic feeling of skepticism that I get throughout the day. Even though I've talked to Katy and confirmed all of the symptoms with her and know 100% that this is the answer...... a small, but very loud voice keeps telling me.... "You will be one of those the procedure doesn't work for", or "You might not even have a hole in your heart"!
Now I know this thinking isn't healthy, but part of me says it's rational because I don't know what is to come. This dang insurance is taking so long..... I could of already been to the cardiologist.
Now I know this thinking isn't healthy, but part of me says it's rational because I don't know what is to come. This dang insurance is taking so long..... I could of already been to the cardiologist.
Tuesday, September 28, 2010
Breaking News!!!!
I just got off of the phone with Katy, who had the PFO closure, and she confirmed ALL of my symptoms as what she had. EVERY SINGLE ONE!!!!! My hope has been lifted. She even said the depersonalization is gone!! Woohooooo I am so happy!! ::Doing a mental Happy dance::
She is a GOD send!!!!! Thank you Lord!!!!!!!!!! :)
Okay, so my first step is still to continue waiting for my insurance to come through, blahhhhh. Next will be to see a cardiologist.
She is a GOD send!!!!! Thank you Lord!!!!!!!!!! :)
Okay, so my first step is still to continue waiting for my insurance to come through, blahhhhh. Next will be to see a cardiologist.
Symptoms
I thought I should post this one!!!!!
A few years ago my symptoms started with:
Off balance feeling
Blurry vision
Floaty feeling
Depersonalization
Depression
Anxiety
FLOATERS
Vision Dimness
Fast forward January 2009, I started seeing tracer type trails. It started when someone would walk in front of me... Like my dog and his tail would trail slightly.. Then it was cars passing by. Now it's different things throughout the day, but always subtle.
Then by June 2008 I started seeing halos around objects and then came the slight after image of objects, like their outlines only!
After Dec. 3rd 2009, when I had my son.... on came the Migraine that lasted for close to a month. Once that tapered I noticed my blurry vision started flashing. Some people call the visual snow, or static. Also, when I am not having a migraine..... I have a constant
If I was to go outside and look at the sky, I would tiny little specs everywhere along with those little spermy type things that wisp around. The static type vision is not really detectable. Sometimes I can see the flashy stuff when I have a migraine going on.
Now when I get to work, my office has a huge window so I never use the light. My office is all white however and with white walls I see all the black specs in my eyes and the wisps, so it makes for a lot of visual noise if you must.
Now the dimmer the light in the room, the more I notice the tracers/trails and after images.
When it's dark at night I see the static type stuff. It doesn't really bother me anymore. I just would love for the tracers/after images to go away.. along with the depersonalization of course!!!!
Any who.... there ya go.
A few years ago my symptoms started with:
Off balance feeling
Blurry vision
Floaty feeling
Depersonalization
Depression
Anxiety
FLOATERS
Vision Dimness
Fast forward January 2009, I started seeing tracer type trails. It started when someone would walk in front of me... Like my dog and his tail would trail slightly.. Then it was cars passing by. Now it's different things throughout the day, but always subtle.
Then by June 2008 I started seeing halos around objects and then came the slight after image of objects, like their outlines only!
After Dec. 3rd 2009, when I had my son.... on came the Migraine that lasted for close to a month. Once that tapered I noticed my blurry vision started flashing. Some people call the visual snow, or static. Also, when I am not having a migraine..... I have a constant
If I was to go outside and look at the sky, I would tiny little specs everywhere along with those little spermy type things that wisp around. The static type vision is not really detectable. Sometimes I can see the flashy stuff when I have a migraine going on.
Now when I get to work, my office has a huge window so I never use the light. My office is all white however and with white walls I see all the black specs in my eyes and the wisps, so it makes for a lot of visual noise if you must.
Now the dimmer the light in the room, the more I notice the tracers/trails and after images.
When it's dark at night I see the static type stuff. It doesn't really bother me anymore. I just would love for the tracers/after images to go away.. along with the depersonalization of course!!!!
Any who.... there ya go.
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