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Treatment for Idiopathic Intracranial Hypertension (IIH)

POTS Care® Clinic offers treatment for Idiopathic Intracranial Hypertension, also known as high intracranial pressure (IIH).

IIH is not uncommon in many “invisible illnesses” including multiple sclerosis, POTS, connective tissue disorders, and chronic fatigue.

If you think you may have IIH, we can help — and we can do so remotely.

 

What is High Intracranial Pressure (IIH)?

IIH is high pressure inside the skull.

Normally, the brain floats in a bath of fluid (cerebrospinal fluid). This fluid surrounds the brain with nutrients, allows the drainage of wastes, and cushions the delicate brain from impact.

Cerebrospinal fluid (or CSF) is always being produced, and always being drained. When this delicate balance is interrupted for any reason, and the fluid pressure increases, symptoms occur.

Common IIH Symptoms

Some common symptoms of high intracranial pressure include:

  • Dizziness
  • Nausea
  • Neck Pain
  • Sleep Disturbances
  • Headaches
  • Flushing
  • Vision Changes
  • Fainting

Cerebrospinal fluid imbalance produces symptoms which may be vague and easily confused with other diagnoses and invisible illnesses. 

Body Position Can Affect IIH Symptoms

Symptoms can worsen when lying down. Some patients may wake up with a fast heart rate,  feel hot and sweaty, and even experience panic. It can seem like anxiety or a bad dream, but it is actually the brain alerting the body that the brain cannot get enough oxygen.

These can all be symptoms of high intracranial pressure, but not all symptoms affect all patients, and the symptoms can be easily misinterpreted.

IIH is Often Missed, or Misdiagnosed

IIH is traditionally considered when the optic nerve inside the eye is swollen (called “papilledema”). If there is no papilledema, the condition is generally missed.

IIH in many of these “invisible” disorders usually presents without papilledema (“IIHWOP” — Idiopathic Intracranial Hypertension Without Papilledema). Symptoms are incorrectly blamed on tension headaches, migraine, cervicogenic headaches, craniocervical instability, and somatic (psycological) disorders.

When correctly identified and treated, it is life-changing for the patient.

High intracranial pressure treatment staff

We’re IIH Experts

The combination of medical expertise and personal experience with IIH is invaluable when evaluating and treating IIH.  

Founded By An Eye Doctor & Former IIH Patient

Dr. Diana Driscoll, an optometrist and Clinical Director of POTS Care®, was an IIH patient, as were her children. 

Dr. Diana Driscoll created Genetic Disease Investigators to perform diagnostic treatment studies on IIH patients. One goal was to avoid invasive lumbar punctures and myelograms that could cause secondary spinal leaks later. Cutting-edge diagnostic methodology was instead used to evaluate patients in the safest way possible.

Non-Invasive IHH Testing

Eye doctors have specialized equipment that can help with the non-invasive testing for IIH. The fluid that cushions the brain and allows it to float is also found around the optic nerve. This unique anatomy of the eye allows for an evaluation that is not possible with any other part of the body. The eye can be the window to abnormal intracranial pressure, but traditional views of the optic nerve to look for swelling (papilledema) are usually insufficient.

Personalized Treatment & Support

Dr. Diana Driscoll and her team have helped thousands of patients with this potentially disabling condition.No other clinic digs as deeply for answers to evaluate IIH as the team at POTS Care®. Personal experience with the suffering and lack of validation for this condition makes this approach a deeply personal one. Call us for a compassionate and thorough evaluation for IIH.

The POTS Care® Difference

“At POTS Care®, we are experts in Idiopathic Intracranial Hypertension (IIH). IIH can be difficult to detect without swelling of the optic nerve head (papilledema), so careful evaluations of brain MRI’s, signs and symptoms, and some unique ocular testing is necessary. We can get the answers you need with the least amount of invasive testing possible.”

— Dr. Diana Driscoll

What Does It Feel Like To Have High Intracranial Pressure?

Some patients are diagnosed with chronic migraines. Because both migraine headaches and headaches due to high intracranial pressure (IIH) can both occur with nausea, the diagnosis can be missed.

Persistent Headaches & Neck Pain

Some patients can be so severely affected they have daily headaches for years, with little or no relief from medication. 

Patients may also experience persistent neck pain and stiffness, and may have been told they need neck fusions or injections – yet they continue to suffer, or worsen over time.

Spinal Leaks, & Misdiagnosis

IIH symptoms are often misdiagnosed as signs of spinal leaks. Patients undergo invasive testing, which, ironically, increases the risk of actual spinal leaks in the future.   

If spinal leaks are secondary to high pressure, it is always best to treat the high pressure first (and after treatment for the leak). If this is ignored, the leak repair can fail, and patients stay symptomatic.

Consequences of Delayed Treatment 

Some patients with undiagnosed high intracranial pressure can go on to develop CSF leaks (from their noses, ears, or spine). When the fluid pressure builds up, the fluid needs to go somewhere! If there are areas of weakness in the lining of the brain or spinal cord, the chance of a leak increases. 

This is more common in patients with connective tissue disorders (such as Ehlers-Danlos syndrome) or patients with bone spurs on the spine.

We Understand High Intracranial Pressure

“I’ve come to learn that many more people suffer with IIH than we presumed in the past. Doctors generally think of high intracranial pressure as being constant – either it is there or it isn’t. Instead, we’ve found that it can come and go, making diagnosis difficult. Doctors often think that headaches are a necessary consequence of IIH, which is also not true. Patients don’t usually show dramatic papilledema (swelling of the optic nerve), and evidence of IIH is not always seen on an MRI – making it more of an “invisible” IIH. Although lumbar punctures are considered the gold standard for diagnosis, many patients have connective tissue disorders and should avoid lumbar punctures whenever possible. These patients are more prone to spinal leaks that can be secondary to high pressure or secondary to the lumbar punctures themselves. Relying on lumbar punctures is an antiquated mistake that can be avoided. Most patients with IIH suffer for years and even lifetimes, never getting the help they need. Or worse, take unnecessary medications and undergo risky procedures. I not only lived this, but I see it every day at POTS Care®. We are here to change this!”

— Dr. Diana Driscoll

Talk to a Patient Coordinator

We offer evaluation and treatment as needed for high intracranial pressure — and we do so noninvasively. 

Call for the price of your evaluation, treatment, and follow up today.

POTS Care Patient Coordinator Jen

Jen, Patient Coordinator