Pregnant Head?

[Sabbynal]

Can you describe the feeling to a person who doesn't know and not sound ridiculous. I have been ridiculed for so lond, not knowing that what I had was a real thing. I had been dismissed even by my own family as just somehow needy of falling down. For twenty years I have been repeatedly misdiagnosed, and in and out of hospitals, even ended up on the side of the highway with my kids in the car unable to  drive and had to be taken to the hospital (mid roadtrip) only to be diagnosed with confusion.
So now, about three or four months ago my head got pregnant, or so it feels. I don't call it a headache, it just feels like it's about to give birth. Where is that coming from?? That's new. I keep checking my head to see if I am wearing a heaband or sunglasses that are too tight. The nystagmus and dizziness keeps me from driving. My kids know it's "one of those moments" when I start singing the drunken sailor song. I feel it helps lighten the mood for the fact that mommy's gonna have to take a knee in WalMart.
I do have another phenomenon that I haven't found on this forum. It is when I bear down, or take a deep breath like for my inhaler, or push against a big weight, SUDDENLY  there is a sharp pain to the back of my neck, not the regular pain, but like a karate chop, and I cringe up my shoulders to bear it as the veil of throbbing comes from the back of my head over to the front of my head and then I usually blackout for just a moment.
That's what made the ENT want me to have an MRI, and he was the first to suspect the Chiari. Go figure.
If it matters, I see a NS next Thursday in Memphis, though I don't think he specializes, because I don't think the Semmes Murphey Clinic has a Chiari specilist, but he's the best we've got apparently. After that he is supposed to refer me to the Mayo Clinic in MN, which I had heard good things about. Any ideas?

*new to the forum - mother or three - wordy by nature - sorry.

[desertstorm2009]

Hi there....
Your analogy fits so well! It is sad how this condition goes undiagnosed and treated for years! The good news is you're on the right track now... Dr Oro did my daughters surgery for her chiari nine years ago. He was excellent with her. I feel like I should get a bumper sticker with the chiari ribbon on it that says you are not crazy, or alone, what do you think? Lisa :-)

[selmaS]

  Hi and welcome to the Chiari forum.

Are u also DX'd with Chiari?

So many of us can relate to each other as we seem to speak the same language : )

[tanzvette]

This is me!!!!!! I am you.

[selmaS]

  Hi...most of what u complain about and has happened to u, has happened to most of us as well, I was in psychotherapy as well, RX'd Prozac....it is not a easy toad this chiari journey u r on....but u r not alone.

AS for Drs near u, there is one in Nashville....did u look at our list?http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

We do have several members that went to the dr down there and were well pleased.Several have been to Dr Oro, a few others to the WI Chiari Center and a few of us, myself included have been to the Chiari Institute in NY.

U have to check them all out, and see which is right for u...insurance wise, distance...etc....

Hang in there : )

"selma"

[Sabbynal]

Thank you and PamK for your replies. I was diagnosed with Chiari via a contrast MRI, but I don't think they did the CINE MRI. I have to learn more. Of course, right now, when I need my brain the most, it fails me. Our Memphis doctors treat me like a leper, and pass me to the next guy. I see a NS here at our super-duper non-Chiari specializing clinic on Thursday. Maybe they will do the CINE there. Maybe they will send me home. Who knows.
I know too much to give up, and much of that thanks to this forum and the eye-opening links and suggestions. My family has been doing so much of the research for me, as I weary easily, and find reading harder, typing - ridiculous.
For the record, I was smart. I graduated magna *** laude in linguistics and speak six languages. Now I can't find words. How's that for irony?

We want to know why the ramp up of symptoms, and the exponential develpment of them suddenly? I have had balance trouble for years, and dizziness, breathing trouble, as is typical. I was misdiagnosed all that time of course, even once diagnosed at a hospital for "Confusion". (I spelled that right). Like I didn't know I was falling, but my bp and sugar and HR were all fine. Crazy. I was even treated for epilepsy as a young adult because they couldn't figure anything else. I was sent to psychotherapy for years and years, as if it was all stress. I was put on Prozac. I was taken off glutens. I have been my own villiage idiot for even asking for help for something which it seemed I was so clearly the cause of.

A Neurologist in Memphis, TN, prescribed the anti-convulsant medication, 'Topramax", which I insist nearly killed me. It gave me violent painful headaches, the likes of which I had never seen. It made the dizziness and vertigo and falling worse. Worst of all, at night, in my sleep, I could feel the lights go out inside my head. I thought I was diyng. Like the flicker of lights going out in a thunderstorm. I was afraid to sleep. I felt my head filling up with more and more fluid, of what kind I don't know. I feel like I am just about to have a nose bleed, but it never does.
I can tell the change in pressure everywhere. It's not a trick, it's a hazard. I know it because when the pressure shifts, even a little, i fall. I fall walking into a building, because the air pressure changes. I cannot imagine trying to fly.
Last night, my left leg, like my left arm, started to get this pain in it that I cannot massage away. Then it goes, then like a light switch, it turns on again. Are these new symptoms?

We are trying to figure where to go next. I love what I have heard of Dr. Oro in CO. My sister is sold on the Institute in NY. I know there is a Chiari Center in WI. There is no help in Memphis. Our doctors don't even like to touch it. All of them tell me that apart from me they have seen only one other case. Well, me and that guy need help! (bad English for emphasis, sorry).

Ideas. Thoughts.
Thank you, thank you, thank you for welcoming me, for letting me find a place where I can have help, and friends who get it.

[selmaS]

  Hi and welcome to the Chiari forum.

I love ur pregnant head analogy....it fits : )

As for the little black outs, u could be straining and it could cause a CSF obstruction.It is good that u stopped driving as u could suffer a drop attack (black out) while driving.

And u have breathing issues...u most likely do have a blockage...so Like Pam mentioned a CINE MRI is what u need to do next.

I have not heard of ne chiarian going to a MAYO clinic and getting a true chiari NS....MAYO is a good name and they r good for many diff things, chiari is not one of them.
Many of us do have to travel to go to a true chiari specialist...and it is in ur best interest to research the drs u r going to see...and not get hung up on the name of the clinic they r at.

And again, like Pam noted...never feel bad about  long posts...lol...this is ur safe place to vent and rant and share : )

"selma"

[pamk5]

This could be coming from increased pressure in your head.  I describe it as feeling like a champagne bottle under pressure.  I do know how you feel with the falling down.  When I was younger I had scabbed over knees most of the time.  It is worrisome that you are passing out with straining.  It is not uncommon that it makes your headache worse but I have never passed out.  I have however, not felt well afterward for quite sometime.  I think you are on the right track with getting to a specialist.  Have you told the doc about the passing out?  I think you need that appointment sooner than later.   Did your MRI confirm Chiari?  Have they done a Cine Mri to see if there is a blockage of csf flow?  

I am sure Selma will have more to say on this topic.  Dont ever worry about being wordy thats what we are here for.  I hope this helps a little.

Pam