This post will address questions that I receive on this site in the form of Google search terms about Intracranial Hypertension It will also be updated from time to time as new questions appear.

**DISCLAIMER: Please remember that this writer is NOT a doctor and I do not claim to have any kind of medical expertise. ALWAYS contact your doctor regarding your condition, medication, and how to maintain your health.

Why is pseudotumor cerebri called that if it’s not a tumor?

The prefix pseudo means “not actually but having the appearance of; pretended; false”. This means that the disorder Pseudotumor Cerebri has the same symptoms of a tumor inside the skull, but is not an actual tumor.

Source: http://dictionary.reference.com/browse/pseudo

Can I take Ibuprofen while taking Diamox?

Psssh…well, I hope so. I do it ALL the time. My doctors know this and have never cautioned me against it, but then they ARE doctors, not Pharmacists.

You can read about Diamox (Acetazolamide) and its characteristics here: http://www.vimo.com/pharma/drug-details/AcetaZOLAMIDE/d00161/12095

There are no interactions listed for Ibuprofen, so we can assume it is safe.

Narrowing of the Veins to my Brain: What Does This Mean?

First of all, the only way this can be diagnosed is with an MRI of your brain, and a special MRI called an MPV which examines the veins which carry blood from your brain back to your heart. If you have NOT had these tests, and your doctor is telling you this, get a second opinion.

This condition is not unlike CSSVI which is a deficiency or narrowing of the veins that carry blood from your brain to your heart. This condition must be corrected with surgery.

Since this condition was ruled out for me, I have very limited knowledge of the cause, symptoms or procedures used to treat it. Make sure you talk with your doctor to get your diagnosis and major questions answered.

Lumbar Puncture Did Not Relieve My Headache?

<> So, you had a lumbar puncture (spinal tap), and you still have a headache. This can happen for a couple reasons. You might have a spinal headache as a result of spinal fluid still leaking from the puncture site.

<> Your continued headache may also just be residual as your body heals from the pressure symptoms. Give it a couple days and see if it doesn’t begin to feel better.

<> What type of medication therapy are you prescribed? The most commonly prescribed medications for Intracranial Hypertension are Diamox and Topamax.

Diamox is strictly therapeutic. It is a diuretic among other things. However, Topamax is a commonly prescribed migraine medicataion that can get your headaches under control. Do your research on this one. It has some not-so-great side effects like Anorexia. It also makes all carbonated beverages taste like they been soaking pennies and are garnished with a steel bar. Blech!

<> AS ALWAYS CHECK WITH YOUR DOCTOR FOR HELP ON GETTING YOUR HEADACHE PAIN UNDER CONTROL. IH isn’t anything to play with and when your gut says consult your doctor, you should do it.

What can you do to fix a bad lumbar puncture?

Lumbar punctures are used as a treatment for Intracranial Hypertension. Lumbar punctures are more commonly used to check for bacteria in the spinal fluid usually when Meningitis is suspected. However, in cases of Intracranial Hypertension, a lumbar puncture is a therapeutic treatment that drains away excess cerebro-spinal fluid from the head via a needle inserted into the spinal cord via the lumbar spine.

A “bad” lumbar puncture would be when the hole created by the needle doesn’t seal properly, and spinal fluid leaks from the spinal cord. This causes a very intense headache called a Spinal Headache. The treatment or “fix” for this problem is either to wait until it passes or a procedure called a Spinal Patch can be performed. A Spinal Patch is when blood is drawn from the patient and injected into the hole. The blood then clots and seals the leaking hole causing the headache to be relieved.

What does it mean if your optic nerve is bleeding and swollen?

Swollen and bleeding optic nerves can mean more than one thing. In the case of Intracranial Hypertension, your doctor will look for a bilateral problem. This means bleeding and swelling in BOTH optic nerves. The next step will be an MRI of your head to rule out other problems such as an actual tumor.

If your optic nerves are swollen and bleeding, I cannot stress to you enough that you have a VERY LIMITED time to relieve the pressure inside your head before your vision is permanently damaged or LOST. Speak with your doctor and get to the Emergency Room as soon as possible. I speak from experience. I have a permanent loss of vision due to this exact problem. A portion of my optic nerve actually died due to lack of blood flow and I have permanent damage to my vision. By the grace of God, I am able to live a normal life due to the areas of my vision loss which are mostly peripheral areas.

Can a swollen optic nerve be fixed?

The answer to this question depends upon a few things:

<> What caused the nerve to swell?
<> Is the nerve damaged?
<> Has the cause of the swelling been relieved?

When this question is asked from an IH standpoint, these factors come into play. If the swelling has been caused by IH, the nerve is undamaged, and the pressure on the nerve has been relieved, the swelling will go down on its own.

Even if your nerve is hemorrhaging, relieving the pressure with a lumbar puncture can begin the healing process immediately.

Doctors rate the swelling between 1 and 4 with 4 being the most severe.

Upon my initial diagnosis with IH, I had swelling and hemorrhage in both optic nerves rated a 4. I maintained that swelling for a month until it finally returned to normal. I lost some vision due to the swelling cutting off blood flow to a small portion of the nerve. I am fortunate to be able to work, drive, and do anything I could before.

If you have swelling in your optic nerve(s), ask you doctor what is the quickest way to relieve the swelling and pressure on the nerve. Do NOT let your doctor convince you that you need to wait for ANY reason. My former doctor put off a stat lumbar puncture for a week due to me taking Ibuprofen (it acts as a mild blood thinner), I was in the ER the next day with bloody spots in my vision and experiencing intense pain and vomiting.

Is it bad to jump with pseudotumor cerebri?

I think the answer to this question would depend on what your doctor says and the severity of your PTC. There’s been a couple sports that I’ve seriously thought about doing: Karate — including sparring and Roller Derby. I’m not one to use my PTC as an excuse for anything, but at the same time, I have to say that mine is not as severe as many that I’ve read about. However, when it comes to certain sports, I have to think about what a blow to the head might mean.

I’ve never had my doctor tell me that I couldn’t jump, run, bike, or limit me from doing anything. So, my best answer to this is talk it over with your doctor before you engage in any strenuous activity.

If I get a headache from pseudotumor should I go to the ER?

A trip to the ER is totally your call. None of us like to go and depending upon where you live, it is almost always a time consuming endeavor, not to mention, expensive. Here are some things I’ve learned to help me ascertain if an ER trip is really in order.

<> First, is it just a headache? Weather changes drive me crazy. If you have sinus problems or allergies, it can sometimes be difficult to differentiate these symptoms from IH.

<> Do I have additional IH symptoms accompanying my headache such as:

–> Ringing or whooshing in my ears
–> Pain in my back
–> Pain in my neck
–> The feeling that I’m hanging upside down

<> Sleep on it. If the symptoms are better in the morning, it was probably just the weather. If your symptoms persist or become worse again by evening, pay attention to it for a couple days. A visit to the ER maybe necessary.

<> You can avoid the ER if you have a good Neurologist. Your Neurologist should set you up with an alternative plan to having to visit the ER. The best case scenario is that once your symptoms are bad enough for an ER visit, you should be able to call your Neurologist and have them order a Lumbar Puncture at your local Diagnostic Imaging facility. In smaller towns and areas; however, this facility may well be the local hospital. Talk to your doctor and see what your options are.

<> Also, if you are a smoker, lay off the cigs for a bit. Smoking is a vasoconstrictor (constricts your blood vessels) which inhibits the flow of blood and fluid from your brain. Try some coffee. Caffeine is a vasodialator (opens up those vessels), and can drain off that pressure-causing feeling. It works for me. Headache powders, such as Goody’s are a Godsend. I hate the, but they ease pain and contain caffeine. They have saved me from that “need to go to the ER” feeling on several occasions. ALWAYS CHECK WITH YOUR DOCTOR BEFORE TRYING ANY OF THESE THINGS.

Is Pseudotumor Cerebri life threatening?

There is no documented case where Pseudotumor Cerebri ended in death. The most serious complication of PTC is vision loss. Normal Intracranial Pressure is measured under 20. This pressure is measured upon opening when a Lumbar Puncture is performed. My highest documented opening pressure was 49. The optic nerves are crushed at around 60 which results in blindness.

The best way to protect against vision loss and blindness is regular visits with your doctor. If you have a prolonged period of symptoms, it’s probably time for a Lumbar Puncture.

Source: http://www.pseudotumorcerebri.net/