Thursday, September 29, 2011

An Open Request to IH Patients

Last week I finally made public an idea that I have had for bringing awareness to our disease, Intracranial Hypertension, and the patients who live with it every day. If you are involved in one of the many Facebook groups dedicated to our cause, then it is quite possible that you already came across this request, but I thought, before I officially launched the project I should also post the invitation here on the Brain Pain Blog!

So, without further adieu, I give you my Open Request to any and all IH patients looking to raise awareness and share their story:
Hello Fellow IH-ers,

While I recognize that it is nearly the end of IH Awareness month, I have had an idea since the beginning of September that I have been wanting to share with my fellow IH-ers that I don’t think needs to be bound to one month of the year. I simply love the wall of faces that we created in February and now on Facebook of pictures of IH patients saying “I am the face of IH.” Each time I see a new picture pop up I realize how large our population in this “rare disease” really is. However, having spent more than a year blogging, I have become obsessed with stories.

I want to share the stories behind the pictures.

I’ve been thinking it would be great to dedicate a blog post to the faces of IH. I came up with 10 questions I’d love to ask any IH patient that wishes to share their story with the world wide web. I figure, depending on the  response, this could be either a weekly segment or a monthly segment on the IH Brain Pain Blogs ( I think it would be a great resource for new and veteran IH patients to read. I think it could also offer up new opportunities for patients to connect with one another.

We share our stories in forums. We share them with our friends and family, but why not share them with the world? I think it is another way to raise awareness and I was planning on adding a link to the donation page of IHRF on each post.

If you are interested in participating, please e-mail me at with the subject line IH Interview and the answers to the questions following this letter (if there are any you would like to add or subtract, go for it!). Also, if you have a picture you would like to share with your interview and you’d like to attach it to the e-mail that would be awesome.

I’m holding out to see the response before I set up a publishing calendar, but a decision should be made by mid-October, the latest.

I look forward to hearing from you. I hope you are having a pain-free day!

All the Best,
Nicole Rivera

IH Patient Interview

E-mail (where I can contact you)

1. When were you diagnosed?

2. How old were you?

3. What treatments are you using?

4. What has been working for you (we’ll even take home rememdies here!)?

5. What complications, if any, have you experienced?

6. How has this disease changed your life?

7. What lesson(s) have you learned on this journey?

8. What one message do you have for people not aware of IH?

9. What one message do you have for fellow IH patients?

10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?'
It is that simple. So far, in one week I have already received over 12 responses to the interview along with many more messages of intent to follow up! If you are interested, please send me an e-mail - the more, the merrier!

Also, if you know others who may be interested, please share this post to spread the word! Thanks so much!

Wednesday, September 28, 2011

Embracing the Idiopathic

This weekend I found myself in Urgi-Care for a UTI from hell. My fault, I wasn't drinking enough to keep up with my Diamox intake for a little while, so it was bound to catch up with me. Anyway, the thing with Urgi-Care is you have to tell the doctor on call your entire medical history to even get started - they have no idea who the heck you are.

My number one goal in these situations is to make my digestive issues abundantly clear before some rip-roaring antibiotic is prescribed. I guess that's why I almost forgot everyone's favorite pain-bringer in the run-down. The doctor asked, "And why are you on Diamox again?"

"Oh yeah... forgot about that. I have Intracranial Hypertension."

"Oh wow. You can't catch a break." I smile. Empathy, even through humor, is a welcome sign in any medical office.

We continue to discuss my symptoms, allergies and so on, when the doctor stops to ask one more question, "How did you get the Intracranial Hypertension, anyway?"

"It's idiopathic."

"Yikes! Honey, I'm so sorry. Let me go get you your prescriptions."

That was Sunday. I didn't realize how incredibly important that conversation was until yesterday, Tuesday.

You see, I've been pretty sick since Saturday night, but I was kind of expecting Tuesday to be my first day "back to normal." When I woke up still feeling pretty crummy, I was saddened. Then, on top of everything else, my headache returned...

And I was so close to doing what I always do when I get a headache - I was going to begin my quest for the culprit!
  • did I eat something to cause it?
  • did I not eat?
  • did I need to drink more?
  • was I stressed about something?
  • did I not get enough sleep?
  • did I strain my eyes?
  • was I wearing a headband, hat, etc.?
  • was I coming down with a cold, congestion or getting allergies?
This is just a small sampling of the kind of interrogation I put myself through every.single.time I get a headache. However, yesterday, one thought came charging through the rest:
I have a headache because I have IDIOPATHIC Intracranial Hypertension.
Does this seem too obvious to you? I would completely understand if it did, but let me tell you where I believe at least part of my confusion comes from: when I was diagnosed with IIH I changed my life dramatically. I stopped eating gluten and dairy (after speaking to a nutritionist) and I stopped working. The change in diet and the change in daily stress absolutely  affected me favorably, so I know that they both exacerbated the symptoms of IIH - the problem is, I think, part of me, has been pushing it even further and hoping I would find the cause in one of these factors.

When I told that doctor on Sunday that my disease was "idiopathic" and she knew there were no words to say after that, I think that was the first time I fully embraced the stone wall that "idiopathic" is. Originally, when doctors first told me I had idiopathic intracranial hypertension and that "idiopathic" meant "of unknown origin", I have always stuck tiny little word at the end of that definition: YET, as in they just haven't figured out what caused my disease YET, but they're working on it! It was a thought and an attitude of hope, but what it has done to me personally is simply drive me crazy! It is not my job to solve the idiopathic mystery - it is my job to balance my life in between my symptoms so that I am being productive and enjoying, every pain-free, symptom-free moment I have!

So this is my new stance. I am going to embrace the idiopathic nature of my disease. I promise you, this will not be easy for me. I am a problem solver and this problem that takes over my brain and my consciousness more than I would like to admit is extremely difficult to ignore, but yesterday's pain was different and I have to remember that. When I released myself from the duty of finding the origin of my pain I was left only with one kind of pain. I freed myself from frustration and disappointment - yesterday's pain was only physical and I know I am strong enough to deal with that.

Wednesday, September 14, 2011

The Hardest Job of Parenting IH Kids

Everyone agrees that parenting is a tough job.  I doubt if anyone would argue that parenting a chronically ill child is even tougher.  But what does that really mean?...

In our house, with an IH kid, it meant propping her up every morning so that she could get adjusted to the daily pain level, eat some food, choke down her pills, and point her out the door to school every morning.  Of course, that was on the days when she was well enough to go to school.

Since our daughter was diagnosed during her pre-school days, we quickly realized that I had to quit work and become a stay-at-home mom.  Giving up a career was not a hard choice in that situation -- she desperately needed for me to stay home and help her.  Giving up the big salary was little tough, but we had always lived within the means of one income.  We can live without new cars, furniture, modern house updates, etc.  In that way, we were lucky (according to some friends).  I don't see it as lucky, but we have survived.  Being able to stay at home has been absolutely vital to my daughter's education because there were many, many days when she could not be pointed out the door towards school.

That means that I was one of her teachers.  We obtained a second set of books to keep at home.  We worked out a traveling folder system with all of her teachers.  Lesson plans, assignments, completed work, papers to finish, writing assignments, and even quizzes and tests were sent back and forth to school with the help of her brother and neighborhood kids who carried a colored folder system to each teacher.  She was able to read, study, and have me teach her during the short periods during the day when the pain was slightly less.  Not a fun life for a kid!  Every single time that she felt a little better on those days, it was a "hurry up and learn this" event.  It was all learning and none of the fun stuff that happens at school.  No recess, no laughing with the kids, no art class, no P.E., no lunch table conversations, no music class, no classroom projects, no classroom videos, no classroom discussions...

It was obviously not the best learning environment and, yet, it worked.  She is now in high school and still struggles to keep up with the workload.  The result of all the learning difficulties and adaptations has created a phenomenal strength within my daughter.  I hated pushing her when she was sick.  There were quite a few times when I just let things slide because she just couldn't do it that day or week.  During those times, I would eventually have to push myself to push her.  There is no such thing as going on disability from education.  Children have to learn to keep advancing in school.  Repeating a grade is always an option, but that would have been very demoralizing in an already difficult situation.  And, anyway, this disorder is never going away -- it will never end.

After years of persevering, the toughness is showing.This morning my daughter woke up with a tremendous headache.  All of you with IH know what that means -- real, nasty pain.  She had to lay back down and missed her first class of the day.  However, she had a presentation of a project with another student during second period.  She couldn't let her friend down, so she toughed up, got dressed and left for school a little while ago.  I think that she's tougher than me now!  I guess that I should be proud that she's able to overcome such obstacles, but why did I have tears in my eyes when she left?

One more thing --  because this is an invisible disease, not a single person at school will know just how tough she is...

Prescription: Ridiculousness

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. For the endorphins to get flowing we need to laugh in a way that, it seems, only humans can (I didn't know that!). Here's the type of laugh you are looking for according to The University of Oxford's Media page:
The research paper makes an important distinction between relaxed, unforced laughter that creases the eyes, and polite laughter which does not reach the eyes. It concludes that when we laugh properly we produce a series of exhalations without drawing breath, an involuntary physical mechanism that is limited to humans and appears to trigger the release of endorphins. Laughter is important to other great apes too but they breathe in as well as out when they laugh, unlike humans.
How to Find the Most Effective Laughs
Last step now... How do we get that laugh? Believe it or not, it looks like these wonderful people at Oxford made some discoveries in that arena as well!
  1. You are more likely to experience uncontrollable laughter in a group setting. So grab your friends and family for a laugh party!
  2. Slapstick and sitcom comedy has a greater effect than more cerebral comedy. The study noted Mr. Bean and Friends as examples of programming that yielded good results.

 My Favorite Thing

What intrigues me most about this entire finding is that it was not conducted by medical professionals looking to find non-pharmaceutical treatments for their patients. Nope, this study of society and culture was to, "explore the role of laughter in the establishment of human societies two million years ago." Well, all I can say to that is - thank goodness Professor Dunbar and his team at Oxford University remain curious! In my humble opinion, curiosity is, by far, one of the most powerful characteristics held by living beings.

OK people - what do you have for me? 
Give me your funniest suggestions!
We need to compile a list of the things that get us to that deep guffaw-like laugh no we can laugh our pains away!

Tuesday, September 6, 2011

It's IH Awareness Month - Time to Learn About IH

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.


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!


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?!):
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