My New Diagnosis: Idiopathic Intracranial Hypertension
chronic illness,  Diagnosis,  Idiopathic Intracranial Hypertension,  Lumbar Puncture

New Diagnosis: Idiopathic Intracranial Hypertension

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Over the past few months, I have been given an additional diagnosis. This explains the constant headache pressure I feel and may be the cause of many of my other symptoms. The diagnosis is Idiopathic Intracranial Hypertension.

What is Idiopathic Intracranial Hypertension?

Formally known as Pseudotumor Cerebri, Idiopathic Intracranial Hypertension is a condition in which there is too much Cerebrospinal Fluid (CSF) and this increases the pressure around the brain. This increase in pressure can cause debilitating headaches as well as vision loss.

The most common way of diagnosing IIH is by getting a Lumbar Puncture or Spinal Tap. During this procedure, the pressure is measured and some of the CSF is drained to be sent for further testing. If the “opening pressure” is high and if the procedure relieved your headache, you most likely have IIH.

My Lumbar Puncture Experience

I was very nervous about getting this procedure done but it was really simple and wasn’t uncomfortable at all. What I can say is that relaxing your body when you first lay down made it much better. Take slow deep breaths and try to relax as much as you can.

Once the needle is inserted into the spaces of your spine, the doctor will begin removing the fluid using a syringe. It didn’t take long and my near constant headache was completely gone! It was like someone had flipped a switch and it stayed that way for about 4 days.

It is very common to get a headache as soon as you sit up. This headache is typically in the front of your head and goes away as soon as you lay down. I had this and it really wasn’t that bad. I found that drinking a lot of water after the procedure helped reduce this post-lumbar puncture headache.

How is Idiopathic Intracranial Hypertension Treated?

Medication

Treating Idiopathic Intracranial Hypertension can include a medication such as Diamox that will relieve the high CSF pressure. Diamox is a diuretic that is also used to treat altitude sickness. This medication provided me with an incredible amount of relief but unfortunately, it also was doing damage to my kidneys. So I am unable to tolerate this medication.

Shunts

The most common treatment, if medication is not an option, is to have a Shunt placed from the brain or from the spine to the stomach. This provides a way for the excess CSF fluid to drain and relieve the pressure.

As with any procedure there can be complications from having a shunt placement. Like medication, the side effects may prevent this from being a long term treatment for Idiopathic Intracranial Hypertension.

Stents

One of the newest treatments for Idiopathic Intracranial Hypertension is a Venous Sinus Stent. This procedure is considered if a radiological scan called an MRV is done and it shows stenosis or other issues with drainage of the CSF. Placing a stent opens up the narrowed veins in the brain and allows the CSF fluid to drain, thus reducing the pressure in the brain.

This treatment is new and there are risks such as stroke and blood clots that can arise soon after the procedure. Since it is so new, it is also not known how long the stent will manage the IIH.

For More Information Visit:

Preserving vision, easing headaches: Timely multidisciplinary care for idiopathic intracranial hypertension – Mayo Clinic

My Treatment Plan for Idiopathic Intracranial Hypertension

Since my kidneys could not tolerate the Diamox, I was forced to stop taking it. Once that happened, I had the MRV and it was discovered that I do have some abnormalities that are causing my IIH.

After a consult with a Neurosurgeon and a Neuro-Radiologist, we decided that the stenting procedure was my best option. My surgery is scheduled next month.

I will be doing another post soon going into more detail about how the procedure is done, what the possible complications are and what the probable outcomes may be. Until then, just know that I am relieved to finally have some answers!


Disclaimer: This blog post pro­vides gen­eral infor­ma­tion and first hand accounts about a serious medical condition.  The words and other con­tent pro­vided in this blog, and in any linked mate­ri­als, are not intended and should not be con­strued as med­ical advice.


What is Idiopathic Intracranial Hypertension?
What is it like to get at Lumbar Puncture?

One Comment

  • Sally

    I truly hope you are doing well, and are getting relief. I understand all of this all too well. It’s not a club you want to be a part of for sure! Just listen to your body and do what you are able. XO (5 brain surgeries here)😉

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