Intracranial Hypertension; What the doctors won’t tell you about your road to recovery

Intracranial Hypertension is an incurable brain disease that afflicts thousands of women worldwide. So why haven’t the medical community caught on to the most effective treatment?

In 2016, after losing a tone of my eyesight and suffering with severe, debilitating headaches for months, I was diagnosed with Intracranial Hypertension. After trying the “usual” treatments of weight loss, medications, 5 lumbar punctures and finally brain surgery, I was still losing my life to this cruel and incurable disease. It wasn’t until I sought new ways of treating my disease, that I have finally freed myself from the daily pain of Intracranial Hypertension.

What is Intracranial Hypertension?

Intracranial Hypertension (IH) or Pseudotumor Cerebri (PTC) is a disease that affects mainly women of child bearing age, that is characterised by an increased build up of spinal fluid in the skull. The excess fluid puts pressure on the brain as well as the optic nerve, that supplies the eye, and can cause a plethora of painful and potentially dangerous symptoms. Severe headaches are the primary symptom, however the increase of cranial pressure can also lead to stroke, vision loss and blindness.

"Severe headaches are the primary symptom, however the increase of cranial pressure can also lead to stroke, vision loss and blindness"

There are 2 main categories of IH: Primary Intracranial Hypertension, now known as Idiopathic Intracranial Hypertension (IIH) and has no known cause, but is most likely to occur in young, overweight, females in their productive years (20-45). However IIH can be present in both males and females, all ages and all body types. Secondary IIH has an identifiable, cause including drugs (such as tetracycline, lithium, Vitamin A-derived oral acne medications or excessive ingestion of Vitamin A, and oral or intrathecal steroids, growth hormone treatments), sleep apnea and certain systemic diseases such as lupus, leukaemia, kidney failure (uremia), meningitis and dural venous sinus thrombosis. Although there are multiple factors that may trigger the disease, the mechanism by which IH occurs, in either primary or secondary forms, is not known. In most cases, either type of IH is chronic and incurable.

What are the symptoms?

The first main symptom of IH is severe headaches, nausea and vision disturbances. Headaches are often so severe that they will wake the person from their sleep and the headaches are not relieved with pain relief. Many people present to the Emergency Department because the headaches are so severe.

As the intracranial fluid can put pressure on the optic nerves (the blood supply at the back of the eye), patients often report a large “blind spot” in their field of vision. The pressure and associated swelling of the optic nerve is called “Papilledema” and can be a serious eye issue if the pressure is not relieved from the back of the eye quickly.

"Many people present to the Emergency Department because the headaches are so severe"

Other common symptoms include sensitivity to light, dizziness, ringing or whooshing sound in the ear (pulsating tinnitus), stiff back and neck, pain in and behind the eyes, intolerance to exercise, fatigue and memory difficulties.

What are the causes?

A stated above, the main risk factors for Primary Intracranial Hypertension include age, weight, gender and race.However only a very small percentage of obese females of child careing age develop IH, so other factors must be considered. The actual cause of both primary and secondary IH is poorly understood by the medical profession. There is a growing body of evidence that suggests some contraception devices, such as the Mirena IUD, have a strong connection to the development of IH. In America, there are currently lawsuits pending against the makers of Mirena, representing the women who have developed IH whilst they have a Mirena inserted.

How is Intracranial Hypertension diagnosed?

IH is often diagnosed by either a skilled Optometrist, who detects the papilledema during an eye exam or by a Neurologist who consults with the patients after they present to the ED with severe headaches. The optometrist may also conduct a visual field test to determine if there are any enlarged blind spots in the vision and the Neurologist may perform a Lumbar Puncture (LP) or Spinal Tap to measure the flow of spinal fluid present in the spinal cavity. A lumbar puncture is carried out by inserting a needle in the fluid space between each vertebra and measuring the flow speed of the spinal fluid. Often patients are initially misdiagnosed in the ED as having a migraine and the patient will remain undiagnosed for a period of time, until they represent with ongoing headaches. Usually then, head and neck scans are carried out, which can help to come to a conclusive diagnosis of IH.

What is the treatment of Intracranial Hypertension?

First and foremost, the treatment must include addressing any social factors, including diet and weight. Unfortunately, in my experience with IH, there is a massive hole in the psychological side of the condition. It’s all well and good for a specialist to tell you “lose weight and you’ll be cured!” (which I have had said to me by a Neurologist), but it’s been proved time and again by IH sufferers, to be completely false. I have lost a considerable amount of weight since my diagnosis, and it made no difference to my symptoms whatsoever. Besides, an arrogant Neurologist demanding you to lose weight, doesn’t address why or how you gained the weight to begin with. There is growing evidence in regards to psychosomatics and the resolution of diseases. But in the 3.5 years since my diagnosis, not once have I been offered a psychological consult. Moreover, the symptoms of my IH almost completely resolved after I addressed my health in a mindset course where I got deep down into the psyche of how my mindset was significantly contributing to my disease. Before I was introduced to the world of mindset studies and the inner psyche of my disease, I was being hospitalised up to 6 times a year. Since my mindset training, over 12 months now, I have had only 1 day-stay in the hospital.

"There is growing evidence in regards to psychosomatics and the resolution of diseases. But in the 3.5 years since my diagnosis, not once have I been offered a psychological consult"

Other therapies include medications (which carry a huge list of side effects), stenting procedures to stabilize the optic nerves and neurosurgery (which I have endured twice and I strongly recommend against it wherever possible). I had a Ventriculoperitoneal (VP) Shunt placed in 2017, and I’ve hated it since the day I got it. A VP shunt is a tube that is drilled into the centre of the brain, that drains cranial spinal fluid (CSF) to a pressure valve behind the ear.

The pressure valve detects an increase of the fluid flow and automatically drains the fluid via the tube, across my chest, down my sternum and into my stomach (all internally) for my body to flush out via my digestive system. Although this procedure is considered “routine” there are a long list of complications that may arise, of which I have had many. Including incorrect placement, kinking of the tubing, malfunctions of the pressure valve, dislodging of the tubing, overdrainage, obstructions and many many more.

In my personal experience, I truly wish that I had learned about psychosomatics and the benefits of mindset studies, before I had my VP shunt placed. Losing weight did not “cure” me, as I was once told. Medications made me manic and made me suicidal. Surgery cost me so much more than just my hair and time off work. And the constant “what ifs” of the disease nearly cost me my life. Completing mindset courses and since completing my first course towards becoming a mindset coach, has been the biggest game changer to my disease. If you or someone you love, are suffering from IH, I urge you to seek out a local mindset coach in your area and do the research into psychosemantics. You CAN get better. You just need to know where to start searching for the answers.

Let me know if you’re an IH sufferer and what you believe was the cause of your disease. Let me know if you’ve had surgery or tried the medications and let me know what worked, and what didn’t work, for you.

Love you all, Dee