Intracranial Hypertension

Cleo

The Living Force
FOTCM Member
Hello all,

My niece who is 17 was diagnosed with Intracranial Hypertension in April of 2011. It is a neurological disorder in which cerebrospinal fluid pressure within the skull is too high. She was having severe migraines and blurry vision that led her to the doctor in early 2011. She has undergone numerous spinal taps since then and had surgery late last year (she now has a VP shunt, which is a shunt that diverts cerebrospinal fluid from a ventricle in the brain to an abdominal cavity). The other day she had a tooth pulled that was causing her extreme pain and now the doctor is concerned the shunt may have been affected. My sister took my niece up to the doctor yesterday in a hurry because of the pain, nausea and tunnel vision my niece had after the tooth was pulled. I believe tunnel vision is a sign the cerebrospinal fluid pressure is rising. My niece is scheduled for shunt revision surgery this afternoon (part or all of the shunt is replaced or reprogrammed) and my sister told me on the phone today, that the doctor is also considering an operation called Optic Nerve Fenestration, surgery done primarily to save vision.

Is anyone familiar with this neurological disorder and/or have any pointers on how best to handle this situation in the place that we are at now? I am worried for my niece and wonder why I didn't reach out sooner to the forum about this. I have mentioned to my sister in the past how diet may be affecting any inflammation that exists in the brain but it has been a touchy subject to bring up. She has gotten upset in the past when I've mentioned it. She did say the other day that her, my nephew and my niece are going to try to save up some money so they can start eating a more Paleo diet. I appreciate any input on this matter.

I wasn't sure whether to post this in What's on your mind section or in Diet and Health. If there is a better place, please feel free to move the post.
 
Hello Cleo,

There are several reasons for intracranial hypertension, it might be useful to know more background. Does she fall into the category of idiopathic intracranial hypertension?

Removing gluten would be a number one priority for its known toxicity to the nervous and immune system. Would your sister and/or niece be open minded to read books or articles about the diet? Perhaps she will be more open minded in that way. She could only gain from dietary changes.

Another possibility is to encourage them to consult an alternative practitioner who would guide her through dietary changes and supplements.

Has she ever been tested by their doctors for gluten intolerance? I would not be surprised if her antibodies came back positive for gluten intolerance.

Here is an article on the subject:

Gluten Sensitivity and the Impact on the Brain

_http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html?

Several years ago, parents of a lovely nine-year-old girl, Karen, brought her to see me because she had poor memory. They indicated that she had difficulty in thinking and focusing, and because of these issues she was falling further and further behind in her school work. Interestingly, they stated that at times she was fine, while clearly at other times her brain function seemed to be different. They indicated that she had difficulty keeping her thoughts together and that she became profoundly frustrated when this would occur.

Because of her significant issues with academic performance, her parents elected to home school her. Her academic testing revealed that she was functioning at or below a third grade level in a variety of areas, including math skills, reading fluency, story recall and overall academic skills. Fortunately, she had no significant medical problems in her past and her overall physical, as well as neurological examinations were entirely normal. Routine, typical blood studies were unrevealing, so I was left to reconsider her history to see if there were any clues as to what might be causing this child's problems.

What caught my attention was the interesting fact that her problems were not constant, indicating that basically her brain was intact but something seemed to be detrimentally influencing her from time to time, causing her to have these significant issues with respect to how her brain functioned. In considering what factors change day to day in terms of someone's exposure, certainly diet is at the top of the list.

Recognizing that gluten sensitivity (a protein found in wheat, barley and rye) is extremely common, I decided to perform a simple blood test to determine if this child was gluten sensitive. When the laboratory studies were completed, we were surprised to learn that she was profoundly sensitive to gluten. So at that point I instructed her parents to put her on a gluten-free diet. While they considered this diet to be challenging, eliminating all wheat, barley and rye from her diet, nevertheless they complied. Over the next two weeks, her parents observed a remarkable change in her cognitive function. Karen suddenly was able to focus much more readily on her school work and indicated to her parents that she suddenly noticed she was thinking much more clearly. Her parents maintained her on a gluten-free diet and over the next several months continued to notice further improvements in her school work. At the end of the school year, she was tested and her grade level equivalent for math calculation skills was 5.1, reading fluency 5.6 and story recall 8.4, which is to say, functioning at a level considered "normal" midway through the year for an eighth grader.

A brief note from her parents reported:

"Karen is completing third grade this year. Prior to removing gluten from her diet, academics, especially math, were difficult. As you can see, she is now soaring in math. Based upon this test, entering the fourth grade next year, she would be at the top of her class. The teacher indicated that if she skipped fourth grade and went to fifth grade, she would be in the middle of her class. What an accomplishment!"

Louis Pasteur stated, "Chance favors the prepared mind." I am certainly grateful that chance favored us several years ago when Karen came to be evaluated. Because of this experience, I became deeply involved in research exploring the effects of gluten sensitivity on the brain. I learned that gluten sensitivity, known as celiac disease, is actually an extremely common human affliction. In fact, it has been described as "one of the most common human diseases." Current studies indicate that about one percent of Americans are gluten sensitive. This is an astounding statistic when you consider that at the time of this writing, there are approximately 297,000,000 Americans. That means, about 3 million Americans are gluten sensitive. When you consider the population from birth to age five years is 23 million children, that means that approximately 230,000 of these children are gluten sensitive.

It seems astounding that a disease that is so common, is nevertheless, fairly obscure. Despite the fact that it was originally described in 1888, we still don't hear much about it. Standard medical text books typically describe celiac disease (gluten sensitivity) as being primarily a gastrointestinal problem. I recall in medical school being taught that celiac disease was characterized by abdominal pain, abdominal distention with bloating and gas, decreased appetite, diarrhea, nausea, unexplained weight loss and growth delay in children. Newer research indicates that celiac disease can have a profound effect on the nervous system.

Dr. Maios Hadjivassiliou of the United Kingdom, a recognized world authority on gluten sensitivity, has reported in the journal, The Lancet, that "gluten sensitivity can be primarily and at times, exclusively a neurological disease." That is, people can manifest gluten sensitivity by having issues with brain function without any gastrointestinal problems whatsoever. Dr. Hadjivassiliou indicates that the antibodies that a person has when they are gluten sensitive can be directly and uniquely toxic to the brain.

Since his original investigations in 1996, the recognition that gluten sensitivity can lead to disorders of brain function has led to a virtual explosion of scientific papers describing this relationship. Researchers in Israel have noted neurological problems in 51 percent of children with gluten sensitivity and further, describe a link between gluten sensitivity and attention deficit/hyperactivity disorder (ADHD). As authors in a recent issue of the journal, Pediatrics, stated in their research, "This study suggests that the variability of neurologic disorders that occur in celiac disease is broader than previously reported and includes softer and more common neurologic disorders including chronic headache, developmental delay, hypotonia and learning disorders or ADHD."

The link between gluten sensitivity and problems with brain function, including learning disabilities, difficulty staying on task and even memory dysfunction, is actually not that difficult to understand. Gluten sensitivity is caused by elevated levels of antibodies against a component of gluten, gliadin. This antibody (anti-gliadin antibody) combines with gliadin when a person is exposed to any gluten containing food like wheat, barley or rye. Testing for the antibody can be performed in any doctor's office. When the antibody combines with this protein, specific genes are turned on in a special type of immune cell in the body.

When these genes are turned on, inflammatory chemicals are created called cytokines, which are directly detrimental to brain function. In fact, elevated cytokines are seen in such devastating conditions as Alzheimer's disease, Parkinson's disease, multiple sclerosis and even autism. Basically, the brain does not like inflammation and responds quite negatively to the presence of cytokines. Another problem with anti-gliadin antibody is that it can directly combine with specific proteins found in the brain. Specific brain proteins can look like the gliadin protein found in gluten-containing foods and the anti-gliadin antibody just can't tell the difference. This direct role of anti-gliadin antibody in combining with specific proteins in the brain, has been described for decades and again leads to the formation of cytokines, the chemical mediators of inflammation. This is an example of turning on genes that ultimately function in a negative way in relation to brain health and function.

See for instance a case where a woman was diagnosed with idiopathic intracranial hypertension AND gluten intolerance:

_http://www.medhelp.org/posts/Neurology/Chronic-Idiopathic-Intracranial-Hypertension/show/1416789

My wife was diagnosed in September of 2009 with IIH. The event that brought the Neurologist to this possibility was the discovery of Papilledema. On the spinal tap the opening pressure was 28. Yes she is obese (BMI is 40), but her blood pressure is consistently 120/70. Shortly after the IIH diagnosis, she was diagnosed Celiac (done by blood test). Since the blood test is not the gold standard for diagnosis, she was scheduled for a biopsy. However, once the biopsy time came around she had already gone 6 months gluten free. She underwent a 4 week gluten challenge and the results of the biopsy showed completely flattened villi (the Gastroenterologist wouldn't even assign a rating to it, that's how severe it was).
 
Here is Nora Gedgauda's review of the newly released book "Grain Brain" by Dr. David Perlmutter (the one who wrote the article quoted above):

_http://astore.amazon.com/pribodprimin-20/detail/031623480X

"There is truly no more appropriate scientific professional to write a book about the most damaging effects of gluten than a neurologist. According to the Journal of Neurology, Neurosurgery and Psychiatry, "Our finding...implies that immune response triggered by sensitivity to gluten may find expression in organs other than the gut; and the central and peripheral nervous systems are particularly susceptible." Another article in the journal Neurology (Vol 56/No.3 Feb 13, 2005) emphatically states that "Gluten sensitivity can be primarily and at times exclusively a neurological disease, affecting not only the brain and nervous system directly, but also cognitive and psychiatric illness." Few medical professionals actually appreciate this, and instead operate with the illusion that gluten-immunoreactivity is solely a rare enteropathic condition (i.e.,affecting only the gut). Most fail to recognize that 8 out of every 10 Celiac patients (Celiac being only 12% of what comprises the whole of autoimmune gluten sensitivity) have no gastrointestinal symptoms whatsoever! --Or that the incidence of celiac disease, alone has increased more than 400% in just the last 50 years, alone. As a professional that spends my own days in private practice working with the brain (and also doing immunologic testing and nutritional consultation) I can only concur with these aforementioned peer reviewed conclusions--as well as those of Dr. Perlmutter--whole-heartedly.

Fewer medical experts, still, have a fully conscious appreciation of the devastating impact of sugar and starch upon the functioning and premature aging of the brain, or the price we have paid (and continue to pay) as a society for our chronic dependence on these non-essential, nutrient-poor and damaging foods. We owe a debt to David Perlmutter for offering his widely respected professional and insightful voice to these frequently overlooked (and enormously foundational) issues. He shows uncompromisingly that his commitment is to genuine health and not simply disease--and/or merely the treatment of the symptoms of disease with pharmaceuticals.

Among neurologists there is no one more insightful anywhere to write this important book than David Perlmutter. Dr. Perlmutter seems uniquely capable among his peers of truly "connecting the dots" and transcending the limits of the compartmentalized thinking that typically comes with medical specialization. To date, this is easily the most important book written on the often insidious and far-reaching effects of the world's most common (and most under-diagnosed) food sensitivity and least essential dietary inclusions."

It is a medical negligence if doctors have not done gluten intolerance screening tests. Even if they come back negative, gluten is bad news with her neurological condition and young age.
 
Hi Psyche,

Yes, it is idiopathic intracranial hypertension. I remember the doctor also mentioning an older name for it is pseudotumor cerebri. She has been tested for gluten intolerance and the tests came back negative.

My niece seems resistant to the idea that her diet could be affecting her condition so it can be a sensitive subject to bring up around both her and my sister. I think when she's feeling better she looks forward to eating comfort foods which include fast food, not realizing how toxic it is for her.

Thanks for including the article and review. I read them over and I plan to pass on both to my sister and my mom, who is interested in nutrition/the paleo diet.

About the book, "Grain Brain," last week I heard the author of the book discussing it on the radio. I'm glad you mentioned it here because I wrote down the name of the book while listening to the show but had forgotten to look into it. I think this may be a book that my sister would be more open to hearing about and looking into as the author is a neurologist.

Received an update. My niece is out of surgery and it appears the shunt was blocked but not infected, so luckily it does not have to be replaced.

Appreciate your help.
 
I have a situation that occurred this evening, related to my earlier post in this thread and any feedback is appreciated. While at the store with my niece who has idiopathic intracranial hypertension, she asked me to take her to a fast food place to pick up some food. I haven't spent a lot of time with my niece lately and at the time didn't really think a whole lot about it.

She bought her food and also a large soda. Probably the largest soda they have. I started to feel bothered by the fact that I took her to the restaurant, like I was enabling her and by the fact that if I did say something she would get mad at me for it. Kind of felt backed in a corner. After we were in the car she said something about her pain. I believe she often buys fast food to eat when she takes her medicine. I told her that I didn't really feel comfortable taking her to fast food places. This upset her and it brought up once again the fact that she feels like my mother (her grandmother) and I try to tell her what to do regarding diet and that she doesn't really feel she is eating all that unhealthy. I also mentioned something to the effect that it is frustrating not feeling like I can say anything about it without her getting upset. It is altogether a very touchy subject. She hardly said bye when she got out of the car and it may be some time before I hear from her again.

Something similar happened months ago when she asked me to take her to a fast food restaurant and I did, but during and afterward didn't feel good about it and didn't say anything. The next day she was in pain and sick. My sister and niece are on food stamps, so have little to spend on groceries and are financially strapped.

Any input on how I could have better handled this situation and any advice on what I can do to help and not contribute to my sister and niece's stress? My mother and I did buy the book, "Grain Brain" and I did send the book review and article listed in this thread to my mother but my sister didn't seem interested in it. Thinking about it, I could have been more direct with my sister and asked her if it is ok if I send her the article and review. I admit I haven't been very proactive in approaching any subject related to diet with my sister as it really seems to bother her when I do, like there is a block there for her and she is not willing to talk about it. I believe she feels similar to my niece in that I am imposing my thoughts on diet on her.

Also, I believe my sister has been reluctant to consult an alternative practitioner because of the cost as their health insurance most likely doesn't cover it and also because they seem more comfortable with mainstream doctors.
 
This is a very difficult situation, especially when it involves someone you care about.

My own experience is that it is near impossible to get through to people who do not WANT to change their dietary habits. I had a friend who came out of chemo (colon cancer) and I mentioned to her that Paleo might indeed be beneficial for her. She had also seen how I had changed, had dropped 10 pounds, and had on multiple occasions admired my radiant skintone. Initially she was interested, but when the part with the gluten came up, decidedly told me that she will never "give up her pastries".

This came from a woman who had suffered through chemo and had almost died in her fifties.

So... It seems that you did whatever was in your power. I would definitely not take the girl to a fast food place anymore, though.

M.T.
 
Hi Minas Tirith,

Yeah, at this point it really doesn't seem like they want to change their dietary habits and so I will try to be careful with what I say around them about diet. A reminder in a way for me to work at my diet and do the reading on diet that is recommended here that I seem to put off at times. I also plan to not take her to the fast food restaurant anymore, and I'm doubtful at this point that she'll ask me.

Thank you for your input.
 
I found out from my sister, that my niece received the HPV vaccine Gardasil in 2007 when she was around 11 and again in 2009 when she was around 13. From what my sister has told me, they gave my niece the first shot even after my sister told the doctor she didn't want her getting it. The doctor apparently gave her a hard time for saying no to the shot as well. Very upsetting but it is what she told me.

I've been reading some of the articles about Gardasil on SOTT, and the type of symptoms she has are so similar in ways to what other girls or young women who get this vaccine have. I think the next thing my sister and I will do is go over the hospital records from the past so many years, and see how it all might coincide.

For about the last two years, my niece has had a shunt which she has had trouble with, and from what I can tell she relies on prescription painkillers to treat the pain. Concerned about her becoming addicted to them. She's still resistant to changing her diet, still a pretty heated subject so I just don't go there with her.

Any thoughts on the matter are welcome.
 
Cleo said:
For about the last two years, my niece has had a shunt which she has had trouble with, and from what I can tell she relies on prescription painkillers to treat the pain. Concerned about her becoming addicted to them. She's still resistant to changing her diet, still a pretty heated subject so I just don't go there with her.

Any thoughts on the matter are welcome.

Perhaps submitting a report to VAERS might be a good way to get her inspired on taking better care of herself, i.e. doing the necessary dietary detox changes.

_https://vaers.hhs.gov/index

That vaccine is the most dangerous of all, literally.
 
Hi Gaby,

Thanks for the link. Will be looking into the submission process. Think I'll also see what I can find online about possible links between her condition and the HPV vaccine.

Overwhelming but talking about this with my sister, and planning what we'll do next seems to be helping with my sister's stress levels in some way. I just wonder why my niece's doctors, after they reviewed her records didn't see a connection before, especially before the shunt surgery. I'm also in a way, not surprised that they didn't.

I have thought that I might in the meantime ask my sister again if she's open to reading about diet related material, such as the information that you posted here in the thread. Otherwise, I think my niece might be receptive to some form of bodywork like acupuncture. I do feel in a way, like I've been slacking in really facing all of this.
 
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