Tuesday, April 26, 2011

A Lesson On IH

Last night I was sent the following video as a result of my "pseudotumor cerebri" Google Alert. It is funny, it is interesting and it is close to answering one of my burning questions concerning this disease:  
How is this disease discussed in medical school (if at all)?

The video seems to be some sort of Kaplan review segment designed for students who need to recognize, diagnose and treat patients with IH. Get out your notebooks and your pencils to check this one out. Oh wait... you probably already know everything this guy is about to say! Well, here it goes anyway:

While I did learn something new from this video (I did not know the sled dog story), I was a little disappointed in a couple of points:
  • That the name "Intracranial Hypertension" was not given. I understand that PTC is an easier name to remember for doctors since the name holds a meaning that will aid them in identifying the symptoms (like a tumor, but not really one in the brain), however, as a patient, many resources can be found under the IH name. 
  • Also, I wish some attention was given to the fact that while there does seem to be a prevalence in young obese females with this diagnosis, there are in fact children, men and women of all ages and sizes diagnosed with this disease as well.
  • Finally, I was surprised that weight loss and Diamox (Acetazolamide) were the only treatments discussed.
As a teacher I am aware that all details don't make it into your review lesson, so I am hoping that is the case with this clip here and, overall, I am ecstatic that our disease has even made it to a review video in any shape or form! It is a great intro to PTC/IIH and reminds me of the level of knowledge that many of the doctors in my hospital had when I was initially diagnosed - very basic, but enough to put a name to the madness I was experiencing and to direct me to the appropriate specialists. So Kudos to Kaplan Medical and much thanks to the YouTube user pris72 for sharing the video with the world!

Friday, April 8, 2011

The IHRF Needs YOU!

On the Oprah Show today, Steve Paletta, the founder of GiveBack and the winner of Oprah's charitable reality show came to explain his newest venture to the public. After winning $1,000,000 from Oprah Winfrey, Mr. Paletta used half of the money to start a new organization called GiveBack. It is a website that allows anyone and everyone to design their very own charitable foundation.

The process is so simple it is quite ridiculous. You give your e-mail address and make up a password and you have your very own foundation. Once the foundation is created you then get the opportunity to add whichever charities you would like to. You can then add money to your foundation directly, or shop online at any one of the hundreds of participating vendors who will, in turn donate a percentage of your purchase to your foundation.

After you have money in your foundation, you can then decide how to divvy up the money between your charities! I simply love this idea!!

And guess which charity was the very first to be added to my foundation? YOU GUESSED IT! The Intracranial Hypertension Research Foundation. There's only one problem with that though - SO FAR I AM THEIR ONLY FOLLOWER!

That is why I am writing this post to you. Let's set up some foundations! Let's get IHRF some recognition and let's let it benefit from the regular spending we do anyway! And don't worry you can still add your kid's school, the PTA, or any other charitable organization to your foundation, too, just don't forget about The Intracranial Hypertension Research Foundation in Vancouver, WA when you do!

Now get to it! Here's a the link, one more time: GiveBack

...and have an awesome weekend :)

Thursday, April 7, 2011

It's Called a "Wet" Brain

Sometimes I go browsing through the internet for any new news about Intracranial Hypertension, Pseudotumor Cerebri, or perhaps a new treatment.  I've done all the things that the average parent will do when first confronted with the fact that I now have a chronically ill child.
  1. Panic
  2. Cry
  3. Turn to the Internet
Every doctor on the planet cringes when he learns that his patient is going to do some self-education through the internet.  They know what you'll find and it will feed the panic.  Every worst case scenario for IH will be laid out for the world to see.  You'll read about patients in which the medicine did not work or had a severe reaction.  You'll read about botched surgeries and failed shunts.  You'll read about blindness.  You'll read about intractable pain.  All of which really do happen, but you won't find many stories about successful treatment with the medicines or shunt surgeries that went quite well and continued to balance the intracranial pressure after many years.  In fact, there are many more good stories than bad ones.  We don't hear about the good stories because the patients feel good and move on.  The important message here is that IH CAN be managed.

I know all those things and yet I still crawl around the internet. It's irresistible to me.  I suppose that I want to know all aspects of IH so that I can be prepared in case my daughter takes a turn for the worse.  The other day, I was playing with a new Google feature that allowed me to search for news articles concerning Intracranial Hypertension.  I found some interesting articles such as this one.

Chronic alcoholism is a definite disease.  It can be diagnosed with chemical precision.  It can be cured with certainty.  It is caused by "edema" of the brain. By a "wet" brain.   In chronic alcoholism a diseased condition of the brain covering -- not an infection but an irritation causes cells to secret fluid excessively; and the habitual drunkard craves liquor because of intracranial pressure which may be 10 to 20 times that of normal individuals even when he is not on one of his benders....                                        Read more in the Milwaukee Sentinel

This article is from 1933!  I'm certainly glad that this theory didn't work out.  Otherwise, my daughter would be looking at a future that includes alcoholism.  The diagnosis of intracranial hypertension had been around a long time by 1933.  It is frustrating to know that no treatment for IH has been developed in the 100+ years since it was identified.  However, I'm glad to know that we've made at least a little progress.  Nobody in recent times has tried to connect alcoholism and IH.

More progress has been made towards research in the past 10 years than all the previous decades added together.  We have a patient registry and imaging library which researchers have been using to study IH.  It is a valuable tool that has attracted interest from the US government and NASA.  More than a few studies have already been conducted with a number of studies currently in progress.  After all the time that I have spent looking through the internet, the best source of information and research news is still found at the IHRF

I know all that and yet, I can't resist looking for every possible cure for IH that's floating around and I'm sure that I'm not alone.  As a parent of an IH kid, you are probably doing the same.  If you discover something, please feel free to share it with the rest of us.  In the meantime, you'll want to watch out for a few things.
  1. Sadly, there is an abundance of scam artists willing to take advantage of vulnerable people.  The other day I saw an outstanding website in support of a different rare disease.  I was quite impressed with the appearance of the site, the large amount of support information, and it seems to be a very popular group.  I could not tell what the donations were being used for.  I got curious.  As I dug a little deeper, I discovered that the site was created by a single individual disguised as a "research group".  All donations were going into her pocket rather than research.  As a matter of fact, she had it set up as a charitable organization.  Donations were being used to help support the "website" and publish documentation.  And she was getting quite a large number of donations.  hmmmm....I'm sure that the individuals making donations were being led to believe that there was medical research involved.  There are probably scam artists doing the same for IH.  The lesson I learned -- I will always ask what medical research is being funded by the group to which I am donating.
  2. Instant cures!  Other scam artists will prey upon those of us wanting to find a medicine that works.  Every single one of us would love to find a pill that is a silver bullet and gets rid of all our problems.  You will find plenty of people promoting homeopathic cures if you just "send money to ...".  Others claim that the "establishment" is trying to keep this cure a secret because they view it as a threat, but you can get it "here for only...".  If there is a creative way to lure money away from us, they'll find it!  I have found it best to verify any medical treatments through a second source.  If a company or group of people claim to have found a medicinal cure, then I go directly to the medicine's manufacturer and ask lots of questions.  I ask if this particular medicine has been created as a treatment for IH.  If not, then I ask if it's being used as a standard "off-label" treatment for IH.  You might be surprised to learn, that even "off-label" use of a medicine needs to undergo a double-blind study.  This is to avoid potential harm when it is used in an unconventional way.  Another avenue for verification is to check with the NIH
In the long run, I know that progress will be made towards finding a cure or at least a better treatment.  I also know that I'll continue to explore the world for news and information about IH.  It's my weakness -- I always seek more knowledge.  I'm also learning how to identify misleading information and the internet seems to be turning me into quite a skeptic.  If you are like me, I hope that I've saved you a little time (and money).

Wednesday, April 6, 2011

National Day of Hope

According to my blogger's calendar today, April 6th, is the National Day of hope. I'd like to celebrate that now.

I hope you are having a good day.
I hope your tomorrows will be good days too.
I hope you know you deserve the good days.

I hope we find a voice for our condition.
I hope we find a cure.
I hope we learn about this disease.

I hope others understand.
I hope others will support our cause.
I hope others won't have to suffer like we have.

I Have
so every day, and every night
I Hope.

Friday, April 1, 2011


On a cold, snowy day back in January we finally came to the conclusion that we needed to move house. It's something we'd been discussing more and more over the past year or so.
We moved here shortly after my husband's IH diagnosis when we didn't really know much about IH, and we certainly had no idea how our lives were going to change over the coming years and just how much IH would affect every aspect of our lives.

Looking back to how life was then, it is a complete contrast to how it is now.
My husband had just retired from work through ill health (thanks to IH) and I'd just given up my job to become his full time carer. The children were really small; just 7 yrs old and 3 yrs old and we thought that this was the way life was going to be from now on....except that life had other plans for us!

Looking back I remember how difficult the move here was. I vowed I would never ever move again. My husband and the children went to stay with family and friends while I moved everything with the help of some amazing friends, family and a fantastic removals company.
You may wonder why my husband stayed with family while I moved.... the answer is simple. Thanks to IH, he couldn't cope with all the rushing around, lots of people in and out of the house, the added noise around him .. it all left him feeling confused and in pain. So it was decided pretty early on that he would go and stay with family for a couple of days while I moved. The children stayed with a dear friend of mine - it was just easier that way because they were so young.

It was a tough process, and the removals company were so moved by our situation that when I got to our new house, there wasn't one removal lorry outside - there were two!!! Apparently the 2nd team had finished early that day, and when they heard of our situation they drove over to meet our removals team to help out. They were all so kind, and even now it brings a tear to my eye remembering how supportive they all were.

After they had all gone I stayed up all night unpacking boxes so that we'd be more or less unpacked and organised by the time my husband and children came home the following day.
You might think that was a little crazy... and you'd be right, infact it was very crazy ( but hey that's me! LOL) No, seriously all joking aside... there was a reason behind this craziness. You see for the previous couple of months, infact everytime I'd packed up a box, the noise of the packing tape had hurt my husband's head so badly that I'd ended up packing all the boxes upstairs well away from my husband's sensitive ears, and carrying them downstairs once they were packed (and heavy! - it did wonders for my back - NOT!!!!!) How I wish they'd invent silent packing tape!!! LOL. It would make life so much easier.

So now you see why 'crazy' Vicki thought it would be a better idea to just get everything unpacked before he came home to the new house!

As the years followed and we learned more and more about IH, we came to realise that maybe the house I'd vowed we'd never move from, might not be the forever house for us.
We hadn't understood just how the noise sensitivity would affect us as a family.... as the years passed it became apparent that my husband needed a 'quiet' room to go to on the bad days, especially seeing as the bad days far outweigh the good days.

This has been emphasised in the past 18 months since I started working from home again - my 'office' being an alcove in the lounge. The bad IH days are tough when even the clickety clack of the keyboard hurts my husband's head.... so the writing's on the wall as they say. It's time to move.

They say that moving house is one of the most stressful things you'll ever do..... whoever 'they' are, they need to move house with an IH sufferer in the family. Stressful is such an understatement!

I'm fast remembering all the different reasons behind my statement 7 yrs ago "I'm never ever moving again!" LOL

I just wish people who aren't affected by IH could understand how complex it all is.

Living with the complexities of IH is difficult at the best of times, but when you throw the whole 'selling your house, finding a new house and moving into that new house' into the mix it becomes almost impossible at times.

How devoting the time needed to 'declutter' and pack boxes, makes the day to day routines of dealing with IH so difficult to maintain. That then leads to the carer feeling stressed; feeling they need more hours in a day. The IH sufferer feels frustrated and in a sense guilty that they can't do more to help their partner, because their IH gets in the way of them helping as much as they'd like to.

Yet again it's another example of how living with IH can make the most normal of things so complex.