Life With IIH - Inconsistently Consistent

IIH in a nutshell. (source)

Last night was a nightmare. Familiar, of course, but a nightmare all the same. I couldn't think straight, I couldn't see straight, and my head was, in general, uncooperative.Why? you may wonder. The best answer I can come up with is this: This is the frustration of one of my chronic diseases.

If you are unfamiliar with this - and, honestly, I really do wish you are - simply put when you have a chronic disease the best you can hope for is a life that is inconsistently consistent. What I mean by that is this: I don't know when my symptoms will strike (inconsistent), but, unfortunately, I know they will (consistent).  My familiar nightmare.

The worst part about last night was that yesterday was one of those days that I forgot about my conditions. I lived yesterday as close to normal as I have reached in a long while: I woke up relatively early (about 9 am), I wrote a quick post for Rivera Runs Through It, I spoke to my best friend on the phone for two hours, made myself lunch, spent about ten minutes outside with my rooster friend (I haven't written about him, yet have I? Well, here's an old rooster video!), I wrote up a post for StoryDam, I wrote my own post for the A to Z Challenge, I cooked dinner (the challenges began... weakness set in, confusion grew), I found out about HitRecord (more about this later, I hope!), I participated in the StoryDam chat... and then that's when it slammed me, during the chat.

At around 8:30pm last night everything slowed down. The slight tremble of the floor created by my husband walking around felt like an earthquake. My dog's panting for my attention was thunderous. The words on my screen started dancing. I forced my way through the end of the chat, because, like I said, it was one of those days when I forgot how bad it can get. I fooled myself into believing that I am healthy.

And you know what? As bad as last night was. I don't regret it for a minute. If I don't steal those chances to live in the dream, then the rest of my days will be nightmares. I slept until 1pm today - my dog woke me up and I swore it was still morning. I stayed in bed until almost two. I had to. I don't have a headache right now, but it is still spinning. It's not a great feeling right now, but it is familiar. I'm happy my husband isn't home right now, because trying to focus outside myself, on someone else's words, expressions, needs or desires right now is one of those things I can not do. I can hear the words spinning around in my own brain and I can spill them out here in an attempt to empty the insanity into the world to give me peace.

It's that, or sleep.

But I have things to do. I have dreams to live so the nightmares lose their power.

Thanks for reading!

How To Nearly Go Blind At The Age of 32

While you will need a little more than your own efforts to put your vision at risk, you can follow these following steps to increase your chances of going blind if you are diagnosed with Idiopathic Intracranial Hypertension.

Step 1: Ignore all signs that you are going blind right before your eyes. 
A week before I was admitted to the hospital for passing out in my shower, I started experiencing some very strange visual disturbances. One morning while at work I noticed that everyone's head looked "dented". Of course, all of my coworkers told me this was very scary, but I was operating under the premise that if I kept acting like nothing was there, then it wasn't. Add to this that my visual acuity had decreased dramatically in the weeks before, and it is nothing short of a miracle that I can see this screen in front of me. Honestly. Miraculous.

Step 2: Make sure that, once you are diagnosed, you are prescribed an ineffective amount of the drug meant to save your sight and relieve your symptoms.
I had no idea what I was dealing with when I was diagnosed with IIH, in fact, most of the doctors around me had never even heard of it! Anyway, I was prescribed 250mg of Diamox to keep my cerebral spinal fluid in control after my spinal tap showed I had an opening pressure of 60.  This all sounded copacetic to me, but when I felt just as bad a week later for my first follow up as I did when I was admitted, I wasn't surprised to find out that I needed to be on 1000mg (this was eventually bumped all the way up to 2000mg!!) to smack my body back into order. The uneducated doctors essentially erased most of the good the spinal tap did for me. Thankfully, Diamox paired with Prednisone put my system in overdrive toward a life of less cerebral spinal fluid.

Step 3: Take tons of steroids (Prednisone) even though you are a "positive responder" to steroids.
Here's another one of those things no one could have ever known at the time. When I started to taper off the steroids in August of 2009 (after two months of some pretty high doses), a bunch of strange things started happening. Although I hadn't been able to read, drive or see much of anything clearly since before I was diagnosed in June, in the middle of August I lost the ability to see color and suddenly needed my husband to help me walk anywhere - even our home. I could see shapes and shades, but I had lost depth and any kind of clarity at all. I found out at my opthalmologist's office on a Friday, after pretty scary couple of weeks of diminishing vision ending in beyond legal blindness, that the steroids were to blame.


Step 4: When you lose the ability to see color, don't call your doctors or run to any emergency rooms, just wait until your next appointment.
My mantra these days is: Hindsight is 20/20, even if I'm not! because I honestly can't understand why, on God's green Earth, I was so stubborn about all of this. It seems so incredibly clear to me now that I needed to run, while on the cell phone with all of my doctors, to the nearest emergency room when my vision started faltering again. Instead, once my doctor saw me, I was rushed to UMDNJ in Newark, NJ for an emergency eye surgery. Terrifying. But sight saving, so I really can't complain.

Conclusion
In the end, the shortest path to blindness, or any kind of debilitating illness, is embedded in step 1: ignore your body. However, to nearly go blind, or to be saved from yourself in any instance, surround yourself with an excellent support system of friends, family and well-educated specialists. Reach out to communities who know what you are going through (I highly recommend DailyStrength) and, above all else:

Learn

from

your

mistakes.

 This post was written in response to a prompt provided by The Scintilla Project. The prompt I chose to use today was:

Tell a story about something interesting (anything!) that happened to you, but tell it in the form of an instruction manual (Step 1, Step 2, etc.).

A Poem - My Brain Pain

Strained Brain

Drained brain

Compressed with too much fluid.

My pained brain

Unexplained brain

Hidden behind my healthy looks.

Insane brain

Slain brain

A shadow of its former self.

I try to explain

all of the pain

and how insane

I feel when strained,

but I've been slain

and may never be the same

ever again.

~Nicole Rivera

Dedicated to all those who have brain pain like me today, particularly all my brothers and sisters with a rare disease like Pseudotumor Cerebri/Intracranial Hypertension.

May we all have a pain-free tomorrow!

From 60 to 16

It has now been one week since my second lumbar puncture (spinal tap). I had waited over three years for the event, and was looking forward to the spine-poking test with hopeful anticipation. My first spinal tap on June 10, 2009, had been one of the most fantastic medical procedures I had ever experienced in my life. When I laid down upon the table and felt the needle pierce my spinal cord the relief I felt was nothing less than euphoric. In the year (or more) preceding that tap I had a pressure building in my neck, my head and my eyes that was unyielding. I felt as though I was losing my mind. I felt 24 hour pain, pressure and confusion while the world around me saw a healthy face. I knew something was wrong; I knew my body was screaming at me for attention, but no one else could hear those cries. I was alone, I was frightened and I thought I was losing my grip on the world I lived in.

60 

Thankfully, that first spinal tap found the cerebral spinal fluid (CSF) that had been squeezing me from the inside. The tap took away a bunch of the fluid (four vials!) and gave a name to the culprit inside stealing my sanity: Idiopathic Intracranial Hypertension (IIH), or Pseudotumor Cerebri (PTC - so called because the symptoms are the same as those with a brain tumor even though there is none present, psuedotumor = "fake" tumor). The diagnosis was reached because, on that spinal tap, I had an opening pressure of 60 with no sign of infection. The pressure was abnormally high for inexplicable (that's what "idiopathic" means) reasons.

That was then...

16

Last week I didn't know what to expect. After two weeks of tapering off of the Diamox (the drug I had been on to control the CSF) I did not immediately feel as though my brain had been thrust back into the crushing grasp of an overflow of cerebral spinal fluid the likes that I had become accustomed to last decade. I still felt headaches. Dizziness continued to be a major factor, but I could see the world and I could see it without the distractions of floating auras, flashing lights and dented faces (that actually happened right before my diagnosis - very freaky!). What did it mean? According to my doctors, only a good old spinal tap could tell us the answer.

For some reason I was in great spirits the day of the tap. To be honest with you, I credit you. Every single one of you who read the post leading up to the test, every single person who prayed for me, thought of me or just wished me well - something lifted me up that day. I was uncontrollably optimistic. I was told

• the test would be done without a fluoroscope (no fancy x-ray to make sure the doctor hit the right spot), 
• that I would have to be stabbed sitting up then keep the needle in while I do some wacky-balancing act in fetal position while tiling my body over to lay in that position for the procedure,
• that the only people in the world who don't have a bad experience with LP are those with high pressure, and
• that I would have to help the doctor hit the right spot by guiding her when or if she hit a sciatic nerve.

Then I was asked if I would like any drugs to keep me calm. I smiled. I laughed. I said, "No, I don't think so. What for?" Who the hell was I? I went into the room with the doctor and the attending nurse laughing and joking about my icy cold hands. We discussed how silly I was for still keeping my old license which screwed up my medical records everywhere. I politely told the doctor I felt weirdness in my right leg. I heard the panic in her voice as she moved the needle, but could not fathom what was so worrisome... just move the needle! I laid on my side, half hanging off the bed like some weird monkey feeling just fine and thought, "This is almost done," when I heard the doctor say, "Sixteen."

My heart skipped a beat. A number. Could it be my opening pressure?! A sixteen is a NORMAL opening pressure. I could feel no pain. I did everything to stave off the tears of joy. I didn't want to jump to any conclusions, but I couldn't help myself. I don't know what else we did in between - what we talked about or joked about through the rest of the procedure, not until I asked the doctor outright, when the needle was out and I was lying on my back, if my assumption was correct. It was.

I have not yet seen any of my specialists. My first appointment is this week and I'm trying to bump up my next one - with the guy who planned this whole experiment - which is currently in late September. I don't want to jump the gun here, but 16 is very good news to me. Anything under 20 is considered "normal." Normal is pretty awesome.

I know I'm not out of the woods yet. I'm still getting headaches and the dizziness is still crashing every little party I throw in my brain, but they both could be from something else. The fact is, I don't think I need the Diamox to hold back my CSF anymore. I fear typing it, but I've been toying with that very sexy "R" word again (remission!). In August 2011 I found out my Crohn's disease was in remission, why not add IIH to the list in August of 2012?! Crossing my fingers that my pseudo-medical degree, which I achieved through years of Internet study and doctor/specialists inquisitions, has taught me enough to give this hopeful claim some merit!

Since the Tap 

 
In the meantime I've been reading and writing. I've been thinking and dreaming. I've been wondering what comes next? I know it's up to me and I know not to push myself too far too fast, but part of me is holding out hopes that maybe just maybe the headaches and the dizziness is after-shock from three years of Diamox... Part of me is daring to dream that I might just get to taste life again as a healthy human being baring only two scars - the one only the highly trained eye can see when examining my left eyelid, and the other only visible to me in the form of my own vision: fractured, broken and inconsistently depth-deprived.

If it is a dream, I beg you, just let me sleep a little more...

And Finally

One last thing. To all of you who kept me in your prayers and sent me good wishes I can never ever thank you enough, but please know that my heart sings your praises with every single beat.

Lumbar Puncture #2

Back in June my neuro-opthalmologist proposed an experiment for me to undertake in order to ascertain whether or not I could safely discontinue taking Diamox (acetazolamide) without my Intracranial Hypertension threatening my vision and my life. The proposal was simply enough explained: Taper off Diamox in a two week period (as per his instructions) and have a lumbar puncture (spinal tap) at the end to measure the pressure of cerebral spinal fluid without medication. Tomorrow I will be getting that lumbar puncture at 3pm EST.

Diamox Sequels

My unexpected virtual silence in these previous weeks has been as a result of unforeseen side effects from tapering off the Diamox. I have been exhausted, confused, nauseous, in pain, but, most of all, I've been dizzy. This room is spinning right now, in fact, and I'm hanging on tight to my keyboard in between taps. My doctor told me to keep going unless my vision is affected, so here I am, Diamox-free spinning on solid ground praying that these side effects are only a sign of withdrawal and not of active disease. I had one questionable moment of color blindness earlier this week that has been the only thing piercing tiny holes in my life preserver of confidence and hope that I will not have to take this medication again.

I am not writing to bad mouth Diamox. Not by any means. Diamox has helped me save what fractured vision I have left. Diamox has helped turn day long headaches, pressure, confusion and pain into daily, or sometimes even less frequent, headaches that allow me to find corners of the day in which I can write, communicate with others and live my new low impact lifestyle. Diamox wrapped a lasso around my unbridled, untamed cerebral spinal fluid teaching my insides lessons yours may already know. I don't hate Diamox, but it has its own payment that I think I have paid long enough: it is a Pregnancy Category C medication which means, "Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks." While there is plenty of anecdotal evidence of the drug's safety after the first trimester, all stories of women taking the drug any earlier, that I have heard, have been heart-breaking and frightening.

So tomorrow's a big day. I won't get the results right away (at least I don't think I will), but answers will be on their way. Even though I know all the side effects I'm feeling right now will not disappear over night, I'm fairly certain I will feel somewhat better when the lumbar puncture is behind me. (pun?)

Part of me wants to say my blogging schedule will come back to life on Tuesday, but I'm gong to be realistic about this: I'm taking one more week of brain and eye rest. Rivera Runs Through It and all of my blogging life will go back on schedule starting Monday, August 27th. I look forward to the return of my routine! I just hope my eyes and brain will be ready for it!

Do I Have Intracranial Hypertension?

Yesterday I went to my neuro-opthalmologist for my check-up.

After a brief exam, my doctor began feverishly flipping through my records. He had two folders. The pages were written on their front and back and, from what I could tell, he appeared to be looking at everything. I'm so lucky I have such a thorough doctor, I told myself in a secret promise to keep things positive. However, somewhere in the deep recesses of my mind were questions, Isn't this just routine? Didn't he just say things looked stable? Is stable no longer good enough?!

Finally, he spun around on his stool and told me all he was thinking. I sat stunned. I can't even imagine what my faced must have looked like: amused? offended? confused? terrified?

Exactly three years and one week from the day I was diagnosed, three years and one week from the spinal tap that answered all the questions, this doctor was calling that diagnosis and spinal tap into question. "I want to play devil's advocate here. What if you never had Intracranial Hypertension?" He wondered about how the spinal tap was taken, since he wasn't there. He wondered about my initial symptoms, since he took me on three months after in an emergency eye surgery to save me from blindness. He wondered if everything he saw came from something else and perhaps the diagnosis was incorrect.


My doctor, like most of the specialists I have dealt with on this journey, is also a researcher, an intellectual and curious. I respect this and understand this, even on the days it flips my life upside down. He proposed an "experiment" to possibly answer the questions and, in turn, possibly speed along the process of me getting off the medication I've been on for three years. He told my husband and I to think about it. He told us to decide if it is something we think is worth trying (and risking) and he told me what to do if I decide to go for it.

The proposal:

 Drop off my medication and get a second spinal tap now to see where my pressure is.

Risk Factors:

If my intracranial pressure is still high, then I am putting my already damaged vision in danger again. BLINDNESS is a possibility.

Possible Benefits:

If my intracranial pressure is normal, then I can stop taking Diamox, which (a) sucks the life out of me, (b) my body is starting to show signs that it might have a sensitivity to, and, most importantly, (c) is stopping my husband and I from starting our family.

Questions that will be answered as a result of this "experiment":

Maybe only one. If the pressure is high, then we will know that I currently have active intracranial hypertension (IH) and the initial diagnosis was correct. If it is normal, a new question will be raised - Was my initial diagnosis wrong, or was it correct and the IH just went into remission?

So why am I sharing all of this nonsense with you on my blog tonight? Well, two reasons: First of all, I'm doing it and it is equally terrifying and infuriating. The terror comes from the risk, of course. I already suffered through two years of being unable to read because of something wrecking havoc on my eyes and I don't ever want to go back there again. The infuriating part comes from being swept back up into the tidal wave of the "unknown" - although I was diagnoses with a rare disease, having a name for what caused all my problems has been comforting; calling that name in to question is nothing less than disconcerting (never mind, as my husband reminded me, I almost had a brain shunt put in due to this disease!).

The second reason I am blogging all about this is that I know this is not going to be easy. Whether my sight falters or not, I am most likely walking into a world of pain when I take down these meds. My doctor has instructed me to keep going even if the headaches come. The only thing that should bring the experiment to a screeching halt is vision complications. Those are my instructions. Tomorrow I will call the hospital to make my appointment for my LP (lumbar puncture/spinal tap) and build my schedule for coming off the meds from there.

If I can be so bold to make a request of you, it would be this: please send me good vibes in any way that you see fit - prayers, reiki, happy thoughts, virtual hugs, etc. I will take it all. I know I have only come this far in my healing journey on the wings of such mystical creatures and I feel this could be their greatest load to carry yet!

Doppleganger Days

My doppleganger returned. I don't even know who she is, but she looks just like me, sounds just like me and she gets inside my head. However, she is the furthest from the "real me" than I can ever imagine.

She is sick. Not just with a cold or a stomach ache or something that can be worked around - she is bedridden. She is imprisoned by pain and her only journeys from the bed are to the bathroom.

She doesn't eat. She can not write or read or watch TV or even participate in normal conversations. Every time she arrives I am caught completely off guard.

I fight her, but she has allies within. She has somehow won my body over and I must lay in defeat as my system turns against itself. I wonder if she has never left and I only dreamed of moments of humanity, of personal connections, of health, of anything that could be perceived as progress. I wait and cry and pray that she'll leave, but have no idea how to show her the exit.

I hate her. But I can't. She is me. I am sick. I have two chronic diseases, one of them is a rare disease, and this is what life is like. Like everyone, I have good days and bad days. The only difference is that my good days are not as fantastic as a healthy person's and my bad days are so much more extreme.

My doppleganger threatens to stay for a while on this trip (this is day 3 where I find myself typing my story on the notepad in my iPhone while still laying in bed) and thoughts of hospitals have danced in my head since her arrival. But what will the professionals say? "It must be a flare up," or when I remind them of my rare condition, they'll all freeze, "Perhaps you should see your specialist."

Perhaps, if I could get out of bed I would see someone, but what can be done once a diagnosis has been made? "Yes, Nicole, you are sick. We actually told you that already. That's why you see us so frequently."

Alas, I will find my way back. I will find pseudo-healthy me again, I hope. I will be pain free for hours on end! I will be confident enough to take a shower while home alone! I will make dinner for my husband and feed the dogs! The world will stop spinning. The intestines will stop twisting. And my brain will become uncrushed.

But most of all, the doppleganger will leave my eyes alone. She can hurt me and torture me on these visits she makes, but if she dares to threaten my vision again a war will be waged at the conclusion of which I know only one of us shall remain standing.

Hey Chronic Diseases: ENOUGH!

I have come to accept a way of life that is simply unacceptable.

I am angry right now as I am coming to understand that I gave up on a piece of me.

Chronic disease. Damn that term. I was diagnosed with a chronic condition long before I decided to leave my job, but when I was diagnosed with two it seemed as though the weight was simply too heavy for me to bear.

Understandable. I can forgive myself for caving under that burden. What I can't forgive, or understand, is why I am still laying down on this ground.

I have glimmers of hope within almost every week now. I have nearly complete days where I am feeling close to normal in the health range. I've been able to do laundry, keep up on house chores and cook again. I left the house on my own twice this past weekend. I walked places. I have read three printed books (NOT DIGITAL) with minimal difficulty. I am tapering off of my medication with all of this still a reality.

And yet, somehow, it is not enough.

This morning I got sick again. Not from my brain condition, but from my old-standby - the digestive issues. Before 9:30am I have already been to battle with my insides more times than I can count. So, as I prayed for the pain to stop and for my second attempt at breakfast to stay with me I thought, "Why is this still happening?"

When I asked my doctor this same question after he told me that my colonoscopy revealed I am "in remission', his response was a simple, "Oh, then I guess you have microscopic colitis. You should keep taking your medicine." OK. I'm doing that. However, does having a name to what is wrong with me suddenly make it OK? I felt that way when diagnosed with IIH, but that's because I knew the name could finally guide me toward treatment, this time the name feels like an afterthought, not a tool.

I don't eat gluten. I don't eat dairy. I just found out I still have high cholesterol - WHAT ELSE SHOULD I STOP EATING? And, honestly, what difference does it make if none of the food stays with me anyway? I've lost 40 pounds, should I be happy or scared?

I am not only not working now, I am not living. Based on the way this morning went, I will, most likely be in bed (and the bathroom) most of today. Forget my muscles, now my SOUL is starting to atrophy!

This is just dumb.

Getting so sick caused me to do something that I decided in high school I didn't want to do anymore: QUIT. I hate it.

I am exhausted. I am in pain. But, today, I am finally angry and maybe that's enough to wake the warrior within. 

I don't think any of my doctors have a full grasp of how I have altered my life to garner the "improvements" in each of my conditions they see. It is time they realize that I have had no intention of living like this permanently. It is time that I inform them that I would like to bring my life back up to human speed and, for that, I need them to work with me. It is time for me to speak up.

A New Study: Bring on the Laughs!

Yesterday I read an article that I knew I had to share with my Intracranial Hypertension (What the heck is that?!) buddies over at the IH Brain Pain Blogs, but as I was halfway through my post it occurred to me that this is relevant to anyone who experiences pain! Here is a snippet of the post I wrote, or if you just want to jump directly to the full post now, click here.

Prescription: Ridiculousness

Posted by Nicole Rivera

We have all heard that "laughter is the best medicine," but is this just an old-wives tale? Is this a way to get people who are feeling crappy to just clam up and find the fun in life again? Well, a scientific study was done and the answer is no. Laughter, at least, those really deep, hearty, uncontrollable belly laughs, actually have a physical affect on how we feel pain!

The Science Says So
 
In an article I read yesterday on BBC America, the results of an experiment conducted at the University of Oxford were discussed. The experiment was conducted as follows:

The experimenters first tested the pain thresholds of volunteers.
They were then split into two groups, with one being shown 15 minutes of comedy videos, while the other was shown material the researchers deemed boring - such as golfing programmes.

The researchers found that those subjects that had recently experienced belly laughs were able to withstand up to 10% more pain than they had done before watching the videos.

To their surprise, the scientists also found that the other group was less able to bear pain after watching 15 minutes of the "boring" programmes.

So the question must be asked: Is 10% less pain really all that much? The scientists admitted that there was no way to determine that (in an audio clip accompanying the article) since it would depend on each person's experience, but I can say, personally ANY decrease in pain is a positive in my book!

Learn How to Laugh First
 
If you are like me and you're thinking, Where can I get my next dose of laughter?! AND NOW?! Hang on for just one more second, because this isn't just any old giggle you need to muster up.

CLICK HERE TO READ THE ENTIRE POST.

It's Time to Learn About Intracranial Hypertension

It may come as no surprise to you that I have Intracranial Hypertension (IH), as I have proudly posted my picture on Facebook as one of the many faces of this disease, however, some of you may still be wondering what the heck IH is! Which is more than understandable as I (and some of the other doctors in the hospital trying to figure me out) only came to learn of it as the diagnosis was read!

IH Is A Rare Disease
 
Intracranial Hypertension is a rare disease.

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000.

A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.

source: http://www.rarediseaseday.org/article/what-is-a-rare-disease

This is a significant piece of information because rare diseases, for obvious reasons, do not receive the same kind of attention and, more importantly, research funding as more recognizable ones. This leaves patients with limited treatment options and knowledgeable professionals to help in their time(s) of need.

IH is Life-Altering

As most chronic diseases, Intracranial Hypertension is an everyday presence in each patient's life. The symptoms include:

• severe headaches and pain, in general, 
• tinnitus, 
• nausea and vomiting, 
• disorientation, 
• dizziness, 
• pins and needles (more like invisible evil elves stabbing me with knives, but, in general, you get the idea), and 
• visual disturbances (black outs, sparks, double-vision, visual auras, etc). 

 The final symptom is the most frightening, because, if left untreated, this disease can lead to blindness due to optic nerve swelling and damage.
The problem with all of these symptoms is that every single one is invisible. I have to be honest, before I was hospitalized and diagnosed I was getting pretty worried that I was losing my mind! I looked fine to everyone else (until I started grimacing from pain or squinting from vision) and felt worse than I ever had in my whole life. This is a common complaint I hear from fellow IH-ers, as well. Even now, everyone I see can't wait to tell me how amazing I look and I'm sure, to many, it is a sign that I must be so much better, but this disease is tricky, invisible, painful and extremely lonely. We look like we can do all of the things we always could do before, but sometimes that pain is just there. Life has changed, we must adapt. We'll do things, just do them differently. IH-ers better than me have continued in their day-to-day with amazing adaption (I did that for too long with my crazy spastic colon - once IH got added to the mix, my days of deception were over!).


The Cause(s) of IH

Intracranial Hypertension is an increase in pressure in your head due to CSF (cerebral spinal fluid). You see, everyone has CSF flowing in and out of their heads all day long - it's a natural body process. Those of us with IH either make too much CSF or our body just doesn't get rid of it fast enough! The jury seems to be out on which one of those it is. Either way, it leads to all of this fluid in your head, squishing up everything because it doesn't seem to know where to go! I have what is called Idiopathic Intracranial Hypertension, where "idiopathic" stands for unknown origin. Some people can get Secondary Intracranial Hypertension as a result of a number of different conditions or diseases.

I think it is very important to note that IH can happen to anyone. While there is a prevalence in overweight woman of childbearing age, I am heartbroken to inform you that there has been findings in children (I really, really, really don't like that idea AT ALL), women of all shapes and sizes and even men! I worry that the idea that it is only prevalent in one particular group leads to many going undiagnosed for far too long!


IH NEEDS YOU!

My ultimate reason for writing this post today is to spread the word about Intracranial Hypertension. The IH community needs everyone to know a little bit more about our disease and to get some buzz going. Right now the treatments for the disease lead to more side effects that still make day-to-day existence not so bearable.

Here are some suggestions for what you can do for IH this month (did I mention September is IH AWARENESS MONTH?!):

• Donate to IHRF - The Intracranial Reseach Founation is the only non-profit in the world devoted to supporting medical research for chronic Intracranial Hypertension (in other words, THEY ROCK!!).
• Check out the IHRF Facebook page to see the wall of faces of IH, just to get a feel for how many people can be affected by a "rare" disease.
• Read a Book Where the Lead Character has IH - I truly can't say enough about "Excuse Me, My Brains Have Stepped Out" by Pandora Poikilos, but go ahead and follow the link if you want to read my review!

To My Fellow IH-ers

I wish you pain-free days, and if you are new to this mysterious club and stumbled upon this post on your quest to find answers, please do not hesitate to e-mail me with your questions. I remember the initial months of my quest for answers, for anyone in the world to know what I was going through. We out here, all over the place! YOU. ARE. NOT. ALONE.
 

Related Posts:
Think IH on Rare Disease Day
A World Without Books 
Sick Days