Sometimes You Just Have to Laugh

This was posted on a support site I'm part of.  This is absolutely one of the side effects of a drug I'm currently taking.   And if you know me, I had this problem before I started the drug.  So basically it's on steroids now.

I'm a cat following a laser pointer gone wild.

Walk a Mile

Having Chiari and PTC/IIH is no walk in the park.  Daily live is filled with some level of pain and discomfort.  Today happens to be one of those day.

Woke up knowing it was going to being a bad day - you know the feeling you get when you put your hand on top of a vacuum nozzle?  That's the type of headache I have today.  And I'm annoyed by just about everything, good thing I'm alone today.  Which also annoys me.

Like I said, today is one of those days.

Looking at me though, you wouldn't be able to tell anything is wrong.  I don't have any spots or rashes that would show that I am sick.  When I have a headache, I don't have blood coming out of ears.  When you have a headache, look in the mirror, on the outside you look absolutely fine, except you have a headache.

So when you feel crappy every day, but look absolutely healthy every day, it is easy for our loved ones to forget that we are in pain.  I don't know about you, but I hate focusing on how much pain I'm in.  And I certainly haven't stopped living my life, I still have to go to work, go food shopping, have chores that need to be completed.  Life hasn't stopped.

But there are days where I certainly wished it has stopped.  And those are the days it seems our loved just don't seem to be on the same page as us.  Over Christmas, my family kept egging me on to drink alcohol in the midst of being put on new medication.  As much as I would love to solve my headaches with my old favorite standard Citron and Water, I have a feeling that won't work in the long run.

Obviously I am changing my behavior from that in the past, so of course my family is thrown off.  Friends and family are thrown off when I go from loving large and loud gatherings of people to preferring the company of a small number of close friends because my headache intensity will be less.  At work, I know it's throwing off some of my performance.

No outward symptoms and behavioral changes - no wonder its so hard for others to grasp what is going on.  I have a hard time sometimes.

This sucks.  But it sucks for more than just us.

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. 

Let There Be Dark

Often, before Chiari suffers are diagnosed, we are told we are making the symptoms up.  There is nothing wrong.  Test after test comes back normal.  Doctors cannot find anything.  It must be all in our heads.

I was talking to my therapist on Tuesday and I was telling her how I was telling myself that I am making up the symptoms.  Maybe it's just denial that this is happening again.  I am not making up the big symptoms - my headaches and the shoulder discomfort - but the other ones.  The sensitivity to light especially.  But oh my god - the light!!!!!!!

The office I work in is not very large, it's pretty compact.  It's not the greatest building ever, but I don't have to pay for parking so I consider it the best place to work here in the 'Burgh. My favorite about this building is the windows.  The outside walls are waist to ceiling windows all around the building.  The amount of wonderful natural lighting could be amazing.

Could be.

No.  Instead the blinds are down and there are spaced out, approximately every 6' x 2' from each other, these 2' long three tube fluorescent lights.   I can't even begin to image what the wattage of these bulbs are, maybe 3000.  Are they trying to blind us???

For about two months I was wearing sunglasses at work.  The past two days, I've been wearing my scarves over my head as a bit of a shield. 

HR has the note to try and get at least the light above my desk removed.

Stutter

Stop. Ok, go.  

Wait, stop. Go go go.  STOP. 

It feels like my heart keeps stuttering and going and each time it stutters I have to take a breath but there is no room for that breath. 

And I have a headache. 

'Splain. No. Sum up.

I have a headache today.

But that's like saying the sky is blue, my hair is brown, or boys drools. It is what it is.

What makes today's headache so special is that it's rating would only be a two on a pain scale. Woot woot!!  It's been awhile since I've seen a headache this low. The highest it got to today was probably a four at work (DAMN you fluorescent lighting) but that isn't too bad.

Dr CrazyPants NeuroLady suggested a spinal tap after the results of the MRI because my left eye may be flattening to a pancake. Ok, ok.  Technically the words used were " Questionable flattening of the left posterior sclera", but since I don't speak Doctor I'm free to interpret anyway I want to.

PS if anyone is reading this to get some sort of medical advice please leave now. I grew up watching my diabetic grandmother mock her doctors by eating a loaf a bread a day and my favorite remedy for headaches is a few glasses of Citron and water.  Gotta watch my figure. 

I feel like I'm getting ahead of myself here and we just met. My bad. 

"Let me 'splain.  

No, there is too much. Let me sum up."

After about a year of the worst pain in my life (not even remotely being a little over dramatic) I was diagnosed with Chiari Malformation. Less than two months after diagnoses, on December 18, 2000, I under went bone only decompression at JohnsHopkins.  Best Christmas Break Ever!  Six weeks later life is good and I'm in the pool playing water polo, because what else do you do in Erie, PA in February?

Life's been going hunky dory on the Chiari front, get a few headaches here and there, would walk into a table now and again. Normal every day kind of things. 

Then I noticed I started getting stronger headaches more frequently, not a lot, but still more than more. And I was tripping up, down stairs, over my own feet. I got a headache one day, one that started from the back and laughed at the aspirin in my hand. Oh, no. It's back. 

About 25% of bone only decompression surgeries return to have their dura opened, and Dr W at JH pretty guaranteed I'd be one of them. There is always a little part of me hoping I won't have to go through that again. The surgery wasn't bad, sure painful there the first couple days but when I noticed how much weight I lost from the vomiting I was totally ok (I am mostly kidding about that last part there, but hey, I do need to lose some weight).

No, the absolute worst part was not washing my hair for TWO WEEKS!!  My hair merely laughed at the dry shampoo, saying "awww, you're cute". My thick Italian/Irish combo hair with a mind of its own wanted to be cleaned with shampoo and rinsed with water.  I shudder at the mere thought of going through that experience again. 

Thirteen years later though the symptoms are back, all together, at once. And we know what this means.