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.