Status Migraine

It's been a while since I last posted. So, no hole in the heart, no deformity with the lungs. The neurologist I saw today took all things into consideration, but says it sounds like Status Migraine/Aura. I am in a cycle. We are going to try using the medicine I was on for many years before, which I went off around the time this all started, to see if it helps. I am praying this doesn't make it worse!!!! If this does it for me I will be eternally grateful to have another shot at life. I feel bad for others going through this same thing. Making life... it what this is.... because it certainly isn't LIVING life.

Good luck to me tomorrow when I start. P.S., also going for an MRI to rule out anything else.

xoxo ::Fingers crossed::

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!!!!

Feeling down

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.

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!

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.

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!

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.

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.

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.

Migraines/PFO/past drug use?

These are all theories that I keep running through my head today. My son is sick so I had to stay home with him today, which I knew meant disaster for my anxious mind.

You see, right this second a good friend of mine suffering from the same visual symptoms is in Boston seeing a specialist in HPPD. Hallucin Persisting Perception Disorder (sp). His theory is that some people who have done drugs like Acid and sometimes Pot can have a lasting visual effect. From what I have read onset of the condition is immediately following ingestion. I do not fit in that category as it's been over 13 years since I tried LSD once! Yes, it was a bad experiencing, but afterwards I was fine! Pot I had dabbled in over the course of my life with a 6 year gap of not doing it and then doing it a handful of times after that, which again, I was fine afterwards and will never do again. Now, most of the symptoms of HPPD are silimiar to Migraine Aura.... so that is where the confusion and fear sets in for me, While my friend still thinks it is the PFO theory just as I do that fits, she is still in Boston to do a study with a new promising medicine that helps those with HPPD.

Why am I scared you ask? Because for some HPPD resolves on its own, but for many it never goes away. NEVER!!!!! All I want is my life back.....I want to enjoy my life once again as I used to. What changed????? Why did this happen to me???

Now as I stated in a previous post, I found a girl who had a lot of the symptoms I do and her symptoms went in to full remission after getting the hole in her heart sealed. I was able to finally contact her via email today and want to ask her a couple of important questions to see if we really do have that link. She mentioned tracers, lines, dark spots and floaters in her vision, all of what I have. She didn't however mention the after images or the depersonalization.

Right this second my son is in his walker....... walking aimlessly toward any object her can get his hands on... and I...... I am stuck. I am stuck in my own head desperately searching for a way out so I can hold my son and really feel what it's like to be a mommy. So I can walk outside and breathe the air and feel the seasons as I used to. I look so normal on the outside..... but on the inside I am a complete wreck!!!

I found Katy T!!

Okay, so I had no luck with the Katy T I found on Facebook, however I totally found the Katy T On Myspace!! She had the same picture up that she used on her blog.... so that might not be a good thing. Could mean she no longer posts. She has every symptom I have except for the after images. She mentioned tracers, which I know I have for sure! I believe we all have different symptoms because of the way the cortical spreading hits. There is no telling how deep it penetrates.... this is all in my opinion. I have no idea how it works, all I know is it's a wave that spreads across a part of your brain that usually happens right before an aura hits, however in my case I think this spreading is non stop, along with my aura and my migraine headaches. It's all 24-7 non stop. My heart always hurts as well. I am still waiting for my insurance to come through and then I will be on my way to the dr.'s.

The reason I am writing this blog is because when this first started happening to me I was scared. I thought my life was officially over and not worth living. I had lost my mom 8 months prior to this mess and had just had my baby. It couldn't of been a worse time in my life. If anyone knows anything about having a baby, there is always a small chance that postpartum depression can occur... in my case, I was already living in hell with the migraines so when I started not feeling like myself or recognizing my son at certain times, or places, or people.... I thought for sure it was postpartum. And hell, I may have some..... you can get depersonalization from postpartum... but you can also get it from migraines and I had it before the pregnancy when the weird off balance feelings happened.

Honestly, if you are reading this and you can't find an answer to your problem.... you are having strange visual symptoms that won't go away..... they don't sound like your typical migraine symptom because it lasted more than 30 minutes.... it's lasted for days, weeks, months... continuously.... well my friend, you are not alone. I have found Katy T, and she is symptom free after getting a small hole in her heart sealed. It was called a PFO, a small hole in the heart that never closed at birth. A lot of people walk around with this thing and have no idea. I can bet that you are probably very active.....or were when your symptoms started. I was, and this has robbed me of my life. My next step is finding out how to close it. You can alwaysget enrolled to be in a trial, but if it's a blind trial you won't know if it was sealed for a year. I can't wait another year. MY SON IS ALREADY 10 MONTHS OLD!! I WANT TO FEEL LIKE ME AGAIN!! So who can help me?? I have no idea, but they are out there!!!!

Remember, past the strange visual stuff, the pain, the life changing crap this is putting you through.... there is a way out. Maybe it's something new that dr's don't know about.... such as PFO and migraine... remember there is always a way out, we just have to find it!!

Maybe you are reading this and you were once in my same shoes with the vision stuff and you found the answer and are now symptom free.... please let me know how.... All I want is my life back.... and that is priceless!!

<3 God Bless

Update

Sorry I haven't posted in a while..... I guess it's not like anyone has been reading these posts anyways, but just an update.

I believe I have found Katy T, however she has not responded to my email. Hmmmmm.......

I am searching for a prospective Neuro to see who will listen to what I have to say and believe me.... I have regular doubts that I will ever get cured, but I am fighting for the sake of my son and my husband. I believe in God, and I believe he has set me on this path.... I just need to make sure I stay on the right path to find the answer.

I went in to target today and the man behind the register smiled at me. "I can still recognize you even behind your glasses", he said. "Oh really?, Yea I guess I do come in here a lot." "Yea, we talked about my mom remember?" he says.... "No, I am sorry. When I get these migraines I have to wear my glasses"... "Yea, that's what we talked about, my mom and her getting them and sitting in closets"...He says..

Hmmmm, I have no idea who this guy was. He seemed to know me, but I believe he was confused. I have never spoken to him in my whole life. However, I have taken this as yet another sign that I am on the right path.... TO STANDING OUT WITH MY SUNGLASSES ON WHILE SHOPPING.... haha. At least I don't feel too alone.....

Where can she be??

I have been trying to track down a girl who had the same symptoms as I do. She was sent to a cardiologist and they confirmed a PFO in her heart that had been speculated to be causing other people with PFO's to have migraines. She got her PFO closed and miraculously her migraines went away and all of her symptoms went into full remission. Her name was Katy T and her blog is actually on Blogger. It's been dormant since her remission..... and I completely understand why!!! I would be out living life too! However, I was really hoping to be able to talk with Katy T, who is somewhere in Seattle WA, in hopes that I could be in contact with her Dr. who helped her. I know I live in Florida and it's completely across the state, but I would do ANYTHING if it meant getting rid of these migraines w/aura. I have tried prescriptions, herbs, different foods... nothing helps!!! I need relief... I need life.... I need to meet a dang Dr. who believes me when I say I have a hole in my heart, your medicine isn't going to help me, plug up the dang hole and send me home!!!!! Why can't we just do what is right in this country? If I lived in Europe it would already be sealed..... Why do I have to spend the best days... now months of my life in complete utter Hell instead of anticipating my child's first steps?? Insurance... is it insurance? I will pay one way or another.... My life is priceless... my vision is priceless..... I will never ever get to see my child's first steps again.... I only want to watch him grow without these constant aura's and without these headaches.... is that too much to ask??

Katy T in Seattle Washington..... where can you be?

What's happening to me?

Let me brush you up on how my life has been lately. I found out I was pregnant sometime in March 2009. On April 24th 2009, I lost my mom suddenly to a Pulmonary Embolism. It was the worst thing I had ever gone through. I was married 22 days later.........

Watching my stomach slowly grow while knowing I wouldn't have my mothers guidance was very hard for me. I spent most of my days crying and screaming at God. I completely lost my trust in him and slowly walked away. I became numb inside.... a feeling you can not explain in any other word, but NUMB..... It took a long time for any feeling to began surfacing again for me, but it never fully came back.

I noticed throughout my pregnancy that when I would look at the wall I would see blotches and smudges. Most things began looking dirty almost...... I would stare at an object and it would began to have a white ring along it's edges... almost like a full body Halo.

I was hit by a car in my 9th month of pregnancy. The baby was fine, but I began experiencing daily headaches along with anxiety. It was shortly after this that I began experiencing little wisps in my vision when I looked at the sky. It was the strangest thing.

Now before I go any further I want to let you in on something.... 3 years before this I went through a bout of depression. I started feeling disconnected from myself and also noticed some weird vision symptoms such as the feeling the my eyes were set back in my head to far... and I also felt like I was floating. I noticed a lot of eye floaters as well. It first began after a night of arguing and crying with my then boyfriend. I woke up with my first case of Vertigo, then that led to a constant off balance feeling. Then my vision dimmed out and everything looked darker than normal. I also saw what I called Gnats when I looked at things outside. They were little black spots that would dart around... and no, they were not Gnats! From then on it was a daily nightmare of waking up and not recognizing myself in the mirror and complete self hate. I woke up only to pray for death. How could a 23 year old not recognize herself. I slowly started feeling like I didn't really connect with anyone in my family or my friends. I remember one night in particular I had a decent day, went to get my hair done and by the time I left somehow I forgot what road I was on. I didn't recognize any of the streets. Everything looked so distant to me. I made it home and recovered of course, but it was such a scary thing to go through. I never thought I would get past it. Within 2 months however, after being put on anti depressants I slowly got better. I left my boyfriend, lost my house, bought a new car and started over with my life. I still never felt 100% like my old self, but I took it as a maturing point in my life.

Now this brings us to December 3rd. I went through 18 hours of labor. 3 injections of the epidural medicine and 2 actual epidurals since the first one failed. I pushed for about 30 minutes to get him out. Once he came out.... the world changed for me and not in the way I expected it to. My vision became darker for one. I blamed this on being tired. However I didn't ever want to hold my son. It felt unreal to me. How could I be a mother??? I played it off as much as I could. Visitors came and went in the hospital. I would play the Happy new mother role, all while I knew something was wrong. I stayed up both nights at the hospital watching my son sleep just to make sure he didn't stop breathing. It didn't stop there. I had a breakdown once we got home from the hospital. I ran to my room and stayed there with my son. I didn't want my dogs around him in fear that they would attack him. Once I began getting more comfortable with allowing more company over I started actually taking my son in to the living room. However, the late night obsessions about his breathing continued. I decided to go see my family doctor with concerns that I was experiencing postpartum depression or some form of postpartum anxiety. He immediately put me back on the anti depressant. I can only tell you in one word what happened with in a few weeks of taking that pill..... Madness!!!! I literally felt like I was going crazy. I started imaging horrible things happening to my son and seeing vivid images of this in my head. This scared the crap out of me. I started getting the daily head aches again, this time they were different. It was pain upon waking that only got worse as the day went on. (I was seeing a chiropractor while this was all going on since the accident, but none of it helped.) I decided to see a different dr. who helped me the last time with the depression. She decided to put me on a different medication. I took it for a very short time and immediately tapered off quickly once I noticed a new symptom. My vision had spots. Almost like static t.v. Everything looked a little distorted and smudged. Now this ONLY occurred in doors and on surfaces. I do not see it in the day light which is very weird as well. At night I see it on EVERYTHING however. I started researching online and came across a site for people suffering with a rare, untreatable thing called Visual Snow. I went in to shock and cried for weeks and weeks after reading this. Symptoms would sometimes get worse for people, sometimes better. Sometimes they went away on their own sometimes nothing changed. I was hoping they would stay for me... however that was not the case. I started seeing trails in my vision as cars would pass me by while driving. I would see the end of their car continue to pass after they had already passed milliseconds before. Then came the after images... this is the most bothersome symptom of all, (and I thought the static was at first).. I now can stare at an object for a few seconds and look away and still see the image in my vision. It is a negative image, (like the negatives you get when you get your film developed, but in gray). I wish this symptom would go away the most!!!!! Also, most of us on the board has something called Depersonalization or Derealization. Depersonalization, or DP for short, is the feeling of not being connected to your surroundings. You don't feel like yourself or have any connection to yourself. Kind of like an empty shell or a robot. I get this feeling quite often. The other, which I don't think I've really had.. maybe once of twice is Derealization, or DR. This is the feeling that your surroundings are unreal and look fake.

I started realizing however, that the more I visited the board, the more I would obsess over my symptoms and began ignoring my new baby and my husband. I stayed connected with a couple of people from the site and they kept me updated on any new findings. It turns out there was one diagnosis that most of us, who got tested, not including myself and I will explain in one second, was that they all have something called a Patent Foramen Ovale. P.F.O. for short.

A patent foramen ovale (PFO) allows blood to bypass the lungs. A baby's lungs are not used when it grows in the womb, so the hole does not cause problems in an unborn infant. The opening is supposed to close soon after birth, but sometimes it does not. In about 1 out of 3 or 4 people, the opening never closes.

In about 1 out of 3 or 4 people are good odds that someone you know may have it, but what about a whole online community with the SAME rare symptoms???? Now some people on the site knew that this diagnosis tied them with everyone else, but they didn't think it was the cause of their symptoms. Some were determined to think it was migraine headaches as their dr.'s diagnosed. Complicated Migraine Aura or Migraine related Persistent Aura... etc. Migraine Aura... maybe....Many migraine sufferers have visual phenomenon right before their Migraine attacks.... I myself was having horrible headaches when this came about. As a child I would sometimes get horrible migraines. I remember, and this still stands the case today, I would never like when my mom or dad would pat me on the head because it would hurt so bad. A strange shock sensation would occur when it was touched. This doesn't happen always, but sometimes. I also recall having a very strange thing happen when I was about 7 or so. I woke up once out of a dead sleep and began experiencing everything in slow motion. It was literally EVERYTHING going in slow motion. No trails or anything like that, but slow steps, slow ticks from the clock, slow thinking.... I just read about this possible being related to strokes. I sometimes get strange neck twinges. Where my head/neck would jerk real fast on its own followed by a strange sensation of pulling along with pain on the left side of my head right above and behind my ear.

Now back to my point..... this PFO connection. The reason I have been so stuck on this being the possible reason for my vision/headache problems is because I myself was one of those born with a hole in my heart. Was it a PFO? I am not sure. My parents used to tell me as I was a child that I was born with a hole in my heart, but the specialist said it eventually closed. This is what normally happens when a child is born of course.........

My theory as of late is:

Before I got pregnant I was working out 5 days a week. I was in the best shape of my life. However I began getting headaches after my workout. I then became pregnant, went through a heck of a time with stress after losing my mom and then getting married that maybe it put stress on my heart? Then comes child birth...... they say some people can have a stroke just from passing a bowel.... try passing an 8 lb 9 ounce baby, (I bet you thought I was going to say turd huh? haha)...and imagine what that mixed with a potentially bad heart..... could it be possible that I have always had a small hole in my heart and it just opened up more from the straining of child birth?

But wait, I have more:

PFO and Migraine:
Research has shown a higher prevalence of PFO among Migraineurs than among people without Migraine.³ Small observational and case-control studies indicate that patients with cryptogenic (of unknown origin) stroke have a higher incidence of patent foramen ovale.⁴ It's still under investigation whether patent foramen ovale closure prevents recurrent strokes. It is thought to be possible that blood without enough oxygen may trigger a Migraine when it reaches the brain.

also see:

ORLANDO, FLA—Patients with a history of stroke and a patent foramen ovale have a higher prevalence of migraine with aura than the general population, and after percutaneous patent foramen ovale closure for stroke prevention purposes, they report a reduced frequency of migraine attacks, a new study showed. The finding suggests that a paradoxical embolism passing through the right-to-left shunt in the heart caused by an open foramen ovale may cause not only strokes but migraine as well, the investigators said.

Beginning in 1999, several reports from neurologists using transcranial Doppler suggested that patients with migraine with aura—but not migraine without aura—appeared to have more cardiac right-to-left shunts than controls, said lead author Markus Schwerzmann, MD, of the Swiss Cardiovascular Center Bern, in Switzerland (now at the University of Toronto).

“Clinically, symptoms of aura are sometimes difficult to distinguish from the symptoms of transient ischemic attack,” Dr. Schwerzmann said in an interview. “We were wondering whether these patients with migraine with aura might also have more often a patent foramen ovale that might be responsible for triggering their migraine attacks.”

So you see the link?? I know there is a lot of speculation still between the 2 being related and some who say it isn't.... however I am not going to give up yet. I am making an appointment soon to get checked for a P.F.O. I am praying I have one.... yes this must sound weird... but a diagnosis gives me hope for closure and a possible good outcome if this is connected.

I will keep you posted....