Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I've driven 5 hours so far out of a possible 7 that I'll need to drive to get from Rochester,NY to Columbus, OH for my appointments with Dr. Katz and McGregor. I had to take my 2 daughters out of school for these appointments because my husband had to be in Cleveland for work and we have no family in NY to care for them in our absence. So...we drove...through torrential storms riddled with tornadoes...all the way from Michigan to Atlanta. And if that weren't crappy enough, after cleaning, packing and dealing with the stresses of getting two girls on the road...my shunt is swollen, my neck hurts and my jaw is killing me all the way up to my ear! And, every once in a while, in that ear I get this pulsing crackling noise. Not a whooshing noise like I used to get...this is similar in that it's pulsing...but, definitely different. Has anyone else gotten this?
And sure...I tried calling Dr. McGregor's office to see if they could either re-schedule me for another day this week or at least give me a later appointment on Wednesday, so I could leave tomorrow and avoid the dangerous weather conditions. (Especially since I was promised before my shunt surgery that they would find me doctors in Rochester to care for me....and because they never did, I have to drive 7 freaking hours to see my doctors. So, could we get some flexibility here?) Ohhhh Nooooooo....."Doctor McGregor only sees patients in the office on Wednesdays. We can't schedule you for a later appointment....and if you choose to reschedule we won't be able to see you until January!" Well LA DI FREAKING DA!
So...as I was in pain and wasn't arriving in Cleveland until 9:30 (Wouldn't get to Columbus until 11:30)....my sweet husband comes up with the genious idea to rent a hotel room. So...here I sit at 4 a.m. writing this post! "Why"...you ask? "Why are you not sleeping Khrystine?" Well let me tell you why! BECAUSE MY HUSBAND SNORES LIKE A FREIGHT TRAIN!
At home...we rarely sleep together. His snoring keeps me wide awake and exacerbates my pain. But...he is truly in denial. He doesn't think it's that bad. When he is sleeping upstairs in our two story home...I can hear him snoring from downstairs. So...you might imagine what it's like to lie right next to him.
My girls are restless but they seem to be sleeping at least a little bit. But, you can tell it's bothering them some. But, their kids...they sleep through anything. I, on the other hand, have a brain disease. And his snoring is making me a little crazy. Do you think IH would be a legal excuse for marital manslaughter??? (For those who don't know me...I am joking....kind of.)
So...to resist going downstairs and paying another $100 on a separate room...I am venting to you. Plus...that would definitely freak him out if he woke up in the morning and I was gone.
Tomorrow is going to be a rough day. I have to drive another 2 hours on no sleep and I've no doubt that McGregor won't take my daily pain seriously. He'll tell me my shunt works fine. And, he'll send me on my way. So all of this crap I mentioned before about what it took to get to this appointment will literally be laughable later in an effort not to cry about it all! RIDICULOUS!
MM3
And sure...I tried calling Dr. McGregor's office to see if they could either re-schedule me for another day this week or at least give me a later appointment on Wednesday, so I could leave tomorrow and avoid the dangerous weather conditions. (Especially since I was promised before my shunt surgery that they would find me doctors in Rochester to care for me....and because they never did, I have to drive 7 freaking hours to see my doctors. So, could we get some flexibility here?) Ohhhh Nooooooo....."Doctor McGregor only sees patients in the office on Wednesdays. We can't schedule you for a later appointment....and if you choose to reschedule we won't be able to see you until January!" Well LA DI FREAKING DA!
So...as I was in pain and wasn't arriving in Cleveland until 9:30 (Wouldn't get to Columbus until 11:30)....my sweet husband comes up with the genious idea to rent a hotel room. So...here I sit at 4 a.m. writing this post! "Why"...you ask? "Why are you not sleeping Khrystine?" Well let me tell you why! BECAUSE MY HUSBAND SNORES LIKE A FREIGHT TRAIN!
At home...we rarely sleep together. His snoring keeps me wide awake and exacerbates my pain. But...he is truly in denial. He doesn't think it's that bad. When he is sleeping upstairs in our two story home...I can hear him snoring from downstairs. So...you might imagine what it's like to lie right next to him.
My girls are restless but they seem to be sleeping at least a little bit. But, you can tell it's bothering them some. But, their kids...they sleep through anything. I, on the other hand, have a brain disease. And his snoring is making me a little crazy. Do you think IH would be a legal excuse for marital manslaughter??? (For those who don't know me...I am joking....kind of.)
So...to resist going downstairs and paying another $100 on a separate room...I am venting to you. Plus...that would definitely freak him out if he woke up in the morning and I was gone.
Tomorrow is going to be a rough day. I have to drive another 2 hours on no sleep and I've no doubt that McGregor won't take my daily pain seriously. He'll tell me my shunt works fine. And, he'll send me on my way. So all of this crap I mentioned before about what it took to get to this appointment will literally be laughable later in an effort not to cry about it all! RIDICULOUS!
MM3
As for snoring hubby, I have one too. It's like a constant blowing horn on a train. I used to sleep with ear plugs but with the pulsing it is worse than the snoring. When we stay at a hotel, I take ear plugs for everyone. We have 2 guest rooms but they are close to our room and like you siad, you can hear him from a mile away but at least I can muffle him a little.
I hope the weather is better for you this morning and your doctor is understanding of your pain and runs the tests that TJ suggested. I say as soon as you get done with the appointment log on to Hotwire, find a good price on a four star hotel right there in the same town as the dr and sleep while the girls watch tv and snack the day away then get up in the am and drive home. You can get rooms cheeeeaaap on that site. Hugs to our hero!
debi
Hope your day went well and you got some answers. Thinking of you.
Hugs and prayers,
Judie
Ditto Judie, Hope today went well and look forward to a positive post about your apt with McGregor.
Please tell me it went well and that he agreed to a shunt test that proves your shunt is or is not working!
On pins and needles,
TJ
well i hope you get some answeres and i hope you get some sleep.
has your husband tried those breath right strips? i have no idea how expensive they are but i pretty sure they work. good luck and lotsa hugs your way.
ky
Now I didn't really buy that then and definitely not now after reading your post.