Better explination of IH

 

The following information is taken right from the Intercranial Hypertension Research Foundation's website. For more information on this condition, how you can help and resources for those who suffer with this condition, please visit them at  http://ihrfoundation.org/.

I encourage you to seek out medical help immediately if you, or someone you know, has been diagnosed or may be suffering with this condition.

Life is to precious to waste!!

"Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension. We also provide assistance, education, and encouragement for individuals with chronic IH, their families and medical professionals.
Our mission is to discover why intracranial hypertension happens, along with new, effective treatments. Our ultimate goal is to find a cure."

Living with IH

"Like any chronic illness, chronic IH can impact both individuals and families physically, financially and emotionally.
If you’ve been diagnosed with IH, it’s important to know that this illness affects everyone differently. An IH diagnosis doesn’t necessarily mean that you will have to stop working or going to school or participating in activities that you enjoy. At the same time, it’s important to take of yourself and recognize that there is much that we don’t know about this illness. The best judge of your abilities is you.
Disability is an issue, especially disability due to loss of vision and/or chronic headache. Some individuals do become too sick to continue working or going to school. Simple, everyday tasks can become overwhelming and a formerly independent person may have to rely on others for help.
However, it’s worth repeating that each person’s experience with IH is different. Some people may experience a remission of their symptoms. For others, chronic IH can be cyclical, a pattern of remission and reoccurrence. And for some, the illness is truly chronic and does not go away. With research, we can learn more about the natural course of chronic IH. 

“But You Don’t Look Sick.”

Much of the time, someone with chronic IH may not “look” sick. Physical appearance can often be misleading and is not a good indicator of how well or sick a person with chronic IH may actually be.
It’s also important to remember that signs of chronic IH, such as papilledema, occur within the body, rather than externally and symptoms like a headache can only be felt by the person experiencing it. So, it’s not unusual for patients to feel frustrated when they try to convey their painful circumstances, despite looking “okay” on the outside. It can be equally frustrating for friends and family, who want to understand what is happening to their friend or relative.
Another mystery of chronic IH is that it can be variable. Sometimes, feeling sick occurs in waves. It’s quite possible to feel better for a short period of time, and then, feel worse again or vice-versa. (Sometimes this can happen in a short span of time, i.e. 5-10 minutes.) One hypothesis is that these variations may be due to fluctuations in CSF pressure. A sudden change in behavior or capabilities may be a sign of a change in intracranial pressure.   

Depression

Chronic illnesses in general and neurological illnesses like stroke have been associated with higher rates of depression. A 2007 study from the University of Toledo in Ohio recently found a high prevalence of depression among women with chronic headache. While there has not been formal research directly linking depression and chronic IH, it’s not uncommon for someone with chronic IH to experience depression.
Changes in sleep patterns, appetite, loss of motivation and self-esteem, feelings of guilt or blame, irritability and anger may be signs of depression. Recognizing depression is the first step to getting help. Counseling, especially with someone who has experience with issues relating to chronic illness, may be helpful. If anti-depressant medication is prescribed, it’s important that all doctors know about any other drugs that you are taking, especially other anti-depressants (such as tricyclic anti-depressants like amitriptyline, which may be used to treat chronic headache pain) that can potentially interact.
 

Financial Resources

The costs of medication, surgery, hospitalizations, doctors’ visits, and other medical expenses related to chronic IH can be significant. Loss of a job or wages as a result of being ill does not only impact income but since many people rely on employer-provided health insurance, it can affect health insurance coverage. 

There are government resources to help you find free or low-cost medical care and assist with your bills, including Supplemental Security Income (SSI) and Social Security Disability (SSDI). Many drug manufacturers run prescription assistance programs that provide free or discounted medication to those who are uninsured. In addition, certain religious groups also run social service organizations that help members of the same faith. If you belong to a church or religious institution, they often have resources to help parishioners or can direct you to places where help is available."

May God Bless all of you who suffer, have family member who suffer or have lost a love one to this disease! I will continue to keep all of you in ,my daily prayers.

God Bless,

Jessica

Is there a Silver Lining?

We often take for granted how good life is and forget how quickly things can take a turn for the worst.
While these last few years have not been a piece of cake for me, or my family, I would like to think that I have done my best to find the silver lining in  EVERY grey cloud along the way.
Although, lately I feel as if there is not a silver lining or a blue cloud in sight.
After LOTS of tests and procedures over the last few months I have been forced to face the realization that I am not going to get any better on my own, regardless of what I would like to think or what little magic pill I am forced to take.
I had a visual field that left the doctors telling me I have a 90% chance of going completely blind in the next few months. A nerve test that resulted in the confirmation that I have severe damage to my brain and right side of my body and a spinal tap that resulted in a elevated CSF pressure reading. Think that's alot to take in........ well you have not even heard the best.
Apparently the severe pain upon standing that followed the tap confirmed that I have a defective "ball valve" in my brain. What is the ball valve and Who the heck has a defective one? and why in the world am I the special one who gets the defective one? Is this some cruel joke??? Did I skip class the morning these were being handed out? I mean as if my already dysfunctional brain was not enough, now I get defective valve? If I were an old Buick they would put me down!
In my case a PT Cruiser, but hey that's a whole other post!
Learning this explains alot. It explains why some mornings upon awaking I throw up and others I don't. It explains why sometimes upon standing I get extremely dizzy, why I can only sleep flat on my back because lying any other way causes an extreme burning sensation, why I have so much pressure behind my eyes and a gazillion other things. See the defective valve thingy does not allow the CSF fluid into my brain or it's ventricles properly. Sometimes it rushes in and other times it trickles and apparently if it is stuck it can flood my brain and / or not flow at all.
So what does all of this mean? Well I will find out when I go see the surgeon on the 21st. Looks like there is a shunt in my future. I can not say that I have decided 100% (or even 10% for that matter) that I am on board with this option. While my neurologist does not think I have any other option and he assures me that I will see a dramatic improvement, I am terrified. Terrified of the operation, terrified of the potential complications, terrified by all of the stories I have heard and read about shunt malfunction but most of all -  terrified it will not work.
See truth be told - I am tired. Very tired!! Tired of being sick, tired of being in continual, non-stop agonizing pain, tired of being tested, poked and prodded and tired of watching my family watch me go through this.
I would not wish the ups and downs of this horrible "disease" upon anyone.
My poor sweet babies do not deserve this. Sometimes I feel like if I would just forget about it or suck it up - it would be so much easier on them. But then I have to remind myself that recognizing my limitations is what allows me to be able to get up and move forward with each day. It doesn't determine how fast I will move... just that I am moving and for right now I guess that's all I can ask.