Can you hear it?

I can hear it!

One of the symptoms I see complained about the most on the IH message boards is pulsatile tinnitus. Most times it is experienced as a wooshing sound in the ears that is in sync with your pulse. Some people experience this all the time and for some it is intermittent. Luckily for me it has been intermittent and I have not experienced it since I started the acetazolamide.

This type of tinnitus is caused by a disturbance of blood flow which can be heard in the ears. I can tell you from experience that it stinks.

Space Cadet

Today I was a space cadet. My brains felt like mush.

I am seeing my neuro on Wednesday. I need to make a list of things that we need to talk about.

1. The time I rubbed my eyes and I was completely blind for like 10 seconds.
2. The random shooting pain I had today in my head region.
3. Fatigue.
4. Neck pains.
5. Mushy head syndrome.
6. Visual snow.

I believe this is all. I will add more if I need to. When he asks I will say, "excuse me, just let me check my blog."

I also plan on holding my arms out and seeing if he will give me a hug. I will take bets.

So I gave an interview yesterday. Our local Patch is doing an article on Rare Disease Day and I am going to be in it along with two other members of our community who suffer from rare diseases. I am excited. I will link to it when it comes out. I don't know when to expect it. I hope you will read it.

CSF

Cerebrospinal fluid! I was showering this morning and I realized that I had never talked in detail about cerebrospinal fluid which is insane because my whole life revolves around the stuff.

Your body makes all new CSF almost 4 times a day. It serves three major purposes...

1. It provides a cushion for both the brain and the spine.
2. It allows the brain to float (in essence) which prevents the bottom parts of the brain from becoming damaged from it's own weight.
3. It also provides chemical stability by removing waste products.

So a typical person will make and replace CSF about 4 times a day with absolutely no problem. Well, good for you.

No one for sure why people with IH have a build up of CSF. Just like everything else with this awesome condition it has not been studied enough. The theory is that we do not effectively drain away the CSF we produce. That means that we keep making it that 4 times a day, but it doesn't have anywhere to go.

Nargle Blarble?

I am exhausted.

I think this week has been characterized by that feeling, complete and utter exhaustion. The frustrating thing is that I cannot sleep at night. I have had to take something every night this week because I was having trouble falling asleep.

I got a message from someone who was recently diagnosed with IH. She has a lot of the textbook symptoms. She was told it was all in her head. Even though she is on a medicine that has been known to cause it. Even though her symptoms fit right in. She was tentatively diagnosed with IH and was STILL being told that it was all in her head. She had to fight with her PCP just to get a referral to a neuro.

I am enraged.

This is exactly what needs to stop with this disorder. Do a fucking spinal tap and call it a day. It is not a difficult or really painful procedure. So just do it, see that the pressure is elevated, get the girl some meds and stop tell her she is crazy.

Living with this makes you feel crazy enough as it is. You don't need people in positions of authority to be telling you you are insane as well.

My Eyeball Hurts

My right eyeball is in pain.

My right ear is in pain.

My right neck is in pain.

I am also having some blurriness in my right eye that I am praying doesn't turn into double vision. This is what it felt like the last time I got double vision. But this has happened two or three times in the past and hasn't progressed beyond the blurry vision stage.

We shall see.

I think I need something cheerful... This should do the trick.

Lame

I am disheartened.

I have had a splitting headache all day.

I know that sometimes I will have bad days. I know that. But today I am tired. Not sleepy tired but tired tired. Tired of having IIH. I know I there will be days I feel like this. My neck feels like there is a metal rod shoved into it.

Anyone have a diamond point drill? I would like to you to drill a hole in my head.

I might have smelled like pee

I wasn't going to blog today. I thought I had nothing of importance to report. While it is insanely snowy, my dogs ruined my new electric blanket, and I used my accelerator three times my whole drive home none of that is IIH related

Then I realized why I came home feeling like I had a bad day. I was convinced I smelled like cat pee.

Initially I thought it was a specific student who smelled of feline urine, but the smell was not always around him. Yet I could still smell it and I could not pin point the source leading me to believe that the smell must be coming from myself. Even though I do not own a cat and all of the clothes on my body were freshly washed I still felt like Pigpen for most of the day.

Now that I am home I have realized that I do not smell like cat urine. I also realized I did not smell cat urine when I was out of the classroom and I have not smelled cat urine since I got home. I also realized I do not own a cat.

What I did realize was this is the second time in a week (or maybe two) that I have smelled something that no one else has seemed to. Last time it was perfume. Women's perfume. As we have a classroom full of boys I doubt one of them was the culprit, but that didn't stop me from running around smelling them all. I think I might be experiencing phantom smells.

I just had an MRI and CT two months ago so I have a pretty strong feeling I do not have a brain tumor but when I googled whether others have experienced phantom smells I only found one person who made a passing comment many moons ago.

So I don't know. It seems odd that I would only experience the phantom smells in our classroom, but I do spend a significant amount of time there so maybe it is a law of averages thing? Regardless, just another question for the neuro. I need to make a list.

Headache like Woah

I am pretty sure I have two swollen spots on the back of my neck. I don't know if they are gland related from my cold or fluid related. I will say my neck is incredibly sore and I have a headache in my forehead that is shooting through the right side of my head.

I also feel like I could fall asleep at any second.

At lease AH hung my curtains to block out the breeze from an old door and bought me a heated blanket. I am rather cozy tonight.

I think I need a nap.

The napping house

Today my house was the napping house. It might have something to do with the fact that I have been taking night time cold medicine in the daytime, but I think I am finally getting better. I think a good sleep and I will be ok tomorrow.

I started on pretty much the coolest project ever. I am crocheting it. I can say no more because the recipient of said gift reads this blog.

It is a Christmas gift. Do not judge.

Spray up my Nose

No one in my family will let me use nasal spray. My mom said she didn't think it was safe and my husband said I didn't need more liquid in my head. They will just have to deal with me trying to itch the inside of my nose. It will not be pretty.

I have the most chapped lips on this side of the Mississippi.

I have been having more trouble focusing my eyes lately, but I think it's because of the cold. I don't think any human being is supposed to be this aware of their face.

The Horror

Sometimes I think this thing can't get any worse. Then I learn a new fact about it that just horrifies me.

A few weeks ago I was reading about IH and came across a brief sentence about clear drainage from the nose when your pressure is extremely high. I kind of skipped over it not really paying attention as it had never happened to me. It just popped into my head the other day and I started to think about it more and I realized that the only stuff that could possibly leak out of my nose would be CSF. Then I nearly threw up. So I figured the way to make it less horrifying is to research it because it can't be as terrifying as I am making it out to me.

It was more.

Your brain and spine is surrounded by the meniges. The top most layer of this is called the dura mater. If the CSF pressure gets too high it can cause a rip in the dura mater and CSF will leak out.

But wait, there's more.

The symptoms of this are the same as IH only it is intracranial hypotension, meaning your pressure is actually low because you are leaking CSF. There is one major difference between the two. When you have IH your headache is better when you're standing while with hypotension it is worse. Another tell tale sign would be the clear shit leaking out of your nose and ears.

The best part? Intracranial hypotension is ALWAYS misdiagnosed. It happens just as randomly as IH and it can happen to people without IH. The average patient takes 13 months to get the correct diagnosis and it is incorrectly diagnosed in the emergency room 94% of the time. In one study ER doctors had a 0% accuracy rate. And of course, it is not studied.

I quit.

Snow

Today it is snowing.

There is something frustrating about driving nearly the whole way home without pressing the accelerator.

Tomorrow will be a hard day at work. Both the teacher I work with and the other aide will be out and I will be all alone and so so lonely. Luckily it is only a half day but I am still holding out for a snow day. If there isn't a snow day I will cry. Is it bad that I am actually hoping for double vision so I have to go to the hospital and get an LP?

This cold is kicking my ass. I am crabby as all hell.

I am also apparently not bright. I just stopped in the middle of my blog entry for reasons that I cannot remember and failed to finish it. My head is not smart.

Which reminds me, I didn't take my pill tonight.

I need a keeper.

My first cold

I am currently experiencing my first post diagnosis cold. I feel like complete shit. I think my head might explode. I am sure it is a sinus headache and not a pressure headache, but since I pretty much have a constant headache anyway so this just piles on.

My eyes have also been kind of weird. They feel swollen and I don't know if it's pressure or the cold. I had a little bout of visual snow today which was interesting and new.

I need to sleep.

Remiss if we didn't talk about Remission

So apparently this shit can go away.

Just like everything else involving IIH no one knows how or why or when or whether you will stay in remission. Sometimes it goes away after initial treatment. Sometimes it goes away randomly. Sometimes it comes back.

I am annoyed about other things today and my heart really isn't in this.

I apologize.

<3

My feets are cold

I failed at biking today again. I had terrible cramps this morning. Absolutely terrible. I am a failure.

On the plus side I got this picture from my grandpa yesterday... That is my brother. He used to be a pretty cool guy. I wonder what happened to him.

My medicine schedule is all off today. I took it late this morning because the dogs actually let me sleep in and now I don't know whether to take it at the normal time today or to take it a little later. On the brighter side I feel better than I have in a few days. I think it is because my period finally started which apparently is not uncommon with IH. I had the worst neck ache Friday and Saturday that ended up as a headache at the base of my skull. I was also luckily. Then today I feel fine (minus the worst cramps ever conceived).

I was a pretty cool chick too.

Downton Abbey is on. I think I might want to pee myself I am so excited. I had no clue that the new season started today.

There is only one problem, the dogs need to go out and there aren't any commercials on PBS.

I Fail at Resolving

I broke not one but two resolutions yesterday. I did not blog and I did not bike.

I intended to do both but I was thwarted by those lovely fleece sheets that seem to suck all motivation from my body. I was laying in bed reading and waiting for prime time television to come on so I would have something to watch while I biked. I looked at the clock and it said 6:55. I figured I'd close my eyes for 5 minutes and then get moving. I woke up at 10. I proceeded to read for an hour and then went back to bed and slept until 7 am.

Maybe I blogged and biked in my dreams. To be quite honest I can't remember.

Pain in the Neck

Cervical Spine and the spinal nerves that might be hurting me. (image credit)

No, no I am not talking about the kiddos!

My biggest complaint about IIH is the neck pain. Often times when I get the big head feeling it will be accompanied by a stiff and sore neck. Before I started treatment I would say it was probably the worst pain I have ever experienced and I have had kidney stones so that's saying something.

It is a documented symptom of IH so I have been wondering why it happens. I finally put together enough motivation to research it. It is not caused by infection. My CSF has been tested for all types and it is squeaky clean, as is should be in a patient with IH. It is theorized (no one knows for sure of course because no one will bother to research) that the pressure causes the spinal nerve sheaths to stretch so much that they exit the spine and actually enter the muscle. Ouch.

I actually thought for about two weeks before the double vision started that I had pulled a muscle in my neck. I never thought to go to the doctor because who goes to the doctor for a pulled neck muscle? I even saw somewhere that they can take over a month to heal so I wasn't really worried about it. Turns out I should have been. It was the first indicator that my ICP was dangerously high. Secretly I felt like something was really wrong. You get that bone deep feeling where your body tries to tell you, but you ignore it because you get the same feeling other times and it's nothing. Like the time I got a rash the night the President announced we killed Osama Bin Laden and I was convinced he was going to come on and talk about biological warfare and I was showing the first symptoms but in reality I was just allergic to the antibiotic I was taking. I felt like something was really wrong that time too and it totally wasn't so forgive me if I occasionally do not trust my own body.

Oh well, all's well that ends well right?

Today is MY Day!

Soooo... We have a day! Rare Disease Day. Now, I know it is not a day for people with IH but it IS a day for people like me with rare diseases that don't get the attention needed.

IHRF got my registry registration packet. They will now contact my doctors to get all of my info and they will add me to the registry and I will help get the IHRF one step closer to more grant money and interested researchers for the IHRF. Did I mention you could donate?

Second day back at work and it is already easier. It helps that the Stinker was absolutely adorable today. As she was walking into PE she looked at the two PE teachers and said, "It's my boyfriends!" Come on. That is adorable.

Back to Work I Go

I am exhausted.

I only rode my bike for 15 minutes today. I feel like a failure.

It was good to see the Stinker. I missed her. Her little face is just so cute.

I failed to drink enough water today which lead to the acetazolamide causing dehydration which lead to a headache which has still not gone away.

I think it is time to snuggle up in the fleece sheets.

Fleece Sheets

This blog post is dedicated to my mother who bought my fleece sheets today. It is like sleeping on a cloud.

If you have the chance to sleep on fleece sheets take it. Sleep on them. Preferably with a small beagle dog snuggling up against your stomach. You will never want to leave.

Some days you have to celebrate the little things.

New Year and Hope

I have made resolutions. I never make resolutions. This year there are things I NEED to change so I will make resolutions and I will accomplish the shit out of them.

1. Ride my bike everyday.
2. Write a blog post every day.
3. Continue to tell anyone and everyone I meet about IIH.
4. Plan a walk to raise money for IIH.
5. Be positive even when I feel like shit.
6. Be as diligent as possible in monitoring my condition.
7. Appreciate each good day I have and enjoy it to the fullest.
8. Love myself and don't get depressed because of new limitations.

I think that is enough to start with. 2012, I am going to kick your ass.