Do You Hear What I Hear?

I  am going to describe something and then I want you to close your eyes and and imagine it.  Got it? OK.

You are hearing of a bit of a humming or vibrating sound, maybe as if there is an appliance running somewhere.  On top of that you will hear a high pitched sound - a timer or an alarm going off perhaps.  Then occasionally you'll hear a whooshing sound matching time with your heart beat (or you'll hear the bass of your heart beat).

Now close your eyes and imagine hearing those sounds for about thirty seconds.  Go ahead, close them.  

This is what I hear every moment of every day.  Having this noise in my head makes it incredibly difficult to concentrate let alone hear when someone is talking to me. My poor coworkers call my name to get my attention and I can never hear them.  

They call this Pulse-Synchronous Tinnitus and its one of the major symptoms of Fake Tumors.  I know I am missing so much of what is going on around me because I can't hear.  The worst is at work.  I am missing out getting to know my coworkers better.  These amazing people are sharing stories about what is going on in their in lives and I can't hear half of it.  I don't want to ask them to repeat themselves several time just so I can hear the story or to speak up so half the floor knows their business.  

No, either I nod politely or continue working and do not participate, coming off as I don't care or I am too good for them.  

Sometimes, when I hear something I have to pause and run the sound through my head again, to play Real Sound? or Fake Sound? game.  

Real sound, fake sound, it's so funny how one can take advantage of something and then when it's gone, crave it.  For me, that is silence.  I never appreciated silence.  I slept with music playing, tv was on or I needed to be wherever there was people and noise.  Even if it was the sound of my Dad snoring (that was the main reason I needed music to sleep LOL), and of course I had a playlist for studying.  Walkmans.  Discmans.  iPods. I don't think I could tell you at any point in my past where I willingly spent any significant time in silence.  

What I wouldn't give for a few minutes of silence.  Clean, crisp silence.    No noise.  Just me and the thoughts in my head.  

Words I thought I'd never hear.

Wake Me When It's All Over

So let the Drug Roulette begin!

I'm started my Diamox  thas been added to my Topamax, which are both diuretics (which is meant to lower the pressure in my head), and while not normally taken together (the Pharmacist was like "are you really sure you're doctor said to take both?  Really really sure?), it seems to be helping a little bit.  Still have my daily headaches but they range more in the 3/4 on the non work days, 5/6 on work days.  So that's progress.

I'm pretty sure if I keep this up, I'm going to have to come up with some sort of catchy tune to remember all the medications I'm on.

Side effects are always a pain.  Per usual, dry mouth (why is it always dry mouth?), exhaustion, and more than any other side effect, an increase in feelings of depression.  I think more so than any other medication I've been on.  Loss of motivation, withdrawing from friends/family, loss of appetite.  I really wanted to just crawl into a hole and hide.  Luckily I've been able to recognize that it's a side effect, so while its not changing how I'm feeling, it is changing how I'm thinking about it so I'm not blaming myself which is a huge difference.

Maybe the 18 months of therapy is finally paying off.

In the meantime I wait to meet my NO.  We're playing phone tag to set up an appointment, hopefully early in the New Year.  Hopefully the NO has a solution for the light sensitivity at work and the pressure on my eyes.  Perhaps if we can get that under control then the headaches will become manageable.

And isn't that the goal.

Fake Things are the Biggest Problems

So, I haven't updated in awhile. Lots of things have happened. Biggest is that I went for a Lumbar Puncture and my opening pressure was a 29, which is apparently high and not good. I met with a neurosurgeon this week and he diagnosed me with Pseudotumor Cerebri. 

The "proper" name for pseudotumor cerebri (PTC) is Idiopathic Intercranial Hypertension (IIH) but basically in simplist terms, I'm creating more cerebral spinal fluid (CSF) - our old friend from Chiari days - than is being absorbed by my brain or is being allowed to flow out of my brain, so my good ole brain is acting like there is a tumor up there, but there is none. Hence the term 'pseudo' so that's what I'm going to call it. More specifically, Paris, the Pseudotumor, after Paris Hilton. 

The past few days I've been doing a shit ton of research to see what all of this means (because why the hell would Doctors actually sit down and take the time to explain this anymore when of course everything on the internet is true). It is rare and not much is known about it (of course) but there is some relationship with Chiari patients but more research is needed. 

What I have found is that there is ultimately one really bad outcome of PTC - blindness. So I will be seeing a neuro-opthmologist (NO) soon to watch out for that. I'm pretty sure they are just making up types of doctors now. But this would explain why my eyes have felt totally shitty for awhile. I hate light and they are always incredibly sore, whether wearing glasses or contacts. 

So, not so bad. Except the symptom that's been my biggest problem, the headaches, well they're not going away. Ever.  Those days I want to hire a headsman to cut off my head aren't going anywhere. I am going to have a headache everyday that will vary in intensity. I'll have good days. I'll have bad days. My head is a pressure cooker. 

 

I get to play Drug Roulette to find which drugs will help lower some of the pressure, get repeated spinal taps, take other medication to counter the side effects of the other drugs, meanwhile the headaches are here to stay. 

The other option is surgery to put a shunt in which, based off some of the support group boards I've been reading are even less effective and more troublesome. 

Seriously. I'm so fucking pissed off right now. 

You've got to be fucking kidding me. Chiari, which is no fucking picnic, and now PTC!!!! And there is really know way, as far as I can tell, to attribute which symptom to which. Oh and in the meantime I also had a couple other abnormal other results from the LP that no one is really that interested in finding out about. 

Well I'm determined not to let PTC control my life. Chiari hasn't. I can freaking live in pain, hell I've been dealing with depression for how freaking long now, I've dealt with the physical so far. I've been trying to research information about natural or lifestyle changes to help with the symptoms. Only thing I've seen has been about weight loss bc this seems to target the obese. I've been working on that but I need to include more physical activity. I am going to work with a friend to see if there are any good foods to eat when one has migraines, see if that helps. 

It's going to be slow but I'm just tired of this.