Archive for the ‘Intracranial Hypertension’ Category

Read the first part of this story HERE

Neuro-Ophthal-What?

Immediately, following my diagnosis, I was sent to a Neuro-ophthalmologist. In fact, when the diagnosing doctor left me alone in the room following those two frightening words: Peudotumor Cerebri, he was placing a call to get me into the Neuro-ophthalmologist’s office. I was there in the next couple days to meet this guy. His bedside manner was horrible. He had an assistant come in the exam room with and he dictated in medical terminology his notes to this assistant. He looked in my eyes and dictated in his unfriendly monotone, “Bi-lateral papilledema with hemorrhage.” For the laypeople, that means, “Your optic nerves are swollen and bleeding.”

He ordered a stat or immediate MRI of my brain to rule out tumors. I asked if it was okay to continue taking Ibuprofen for pain, he advised that was fine. I bounced along to my MRI which was normal. I returned to Mr. Personality, and he ordered a stat lumbar puncture (LP) or spinal tap to relieve the pressure on my optic nerves. His office called me the next day to prep me for the procedure. When they asked what types of medication I was currently taking, I told them about the Ibuprofen to which they responded with caution. Come to find out, Ibuprofen is a mild blood thinner and it made them cautious to do the LP.

The saga continues…

I go into the doctor’s office so they can tell me not to take any more Ibuprofen. Mr. Personality then prescribes me Lortabs and sends me home to sit for a week when he should have been sending me to the ER. This was on a Tuesday, I went home, took one of the Lortabs, and went to bed. The next morning I woke up with the worst headache of my life, spots in my vision, and I was throwing up profusely. I was scared to death and too sick to really do anything. My roommate finally convinced me to let her take me to the hospital about 3 or 4pm that afternoon.

I sat in the waiting room of the ER throwing up in a bucket for 7 hours. I was so dehydrated and I could barely hold my head up. I would have happily laid on a slab of solid concrete if I could just. lay. down. It was the worst ordeal I have ever been through and definitely the sickest I have ever been in my life. It was that night that I learned about the wonders of  hospital drugs. They ordered Morphine for the pain, and the relief was welcome and instant. That moment inspired this poem.

Late Thursday night, I met my new Neurologist. He was AWESOME. He told me for months after when I went on my office visits, “When I first see you Ahva, it was baahd. I didn’t know if you see or not.” He ordered an LP for me the next morning. I was so sick I didn’t have the wherewithal to be scared. They could have chopped my legs off at that point to drain the fluid, and I would have been game.

The Meds

That first lumbar puncture was performed with the assistance of x-ray and went over without a snap. It really wasn’t a big deal, and I felt so much better afterward that I could have danced a jig. Friday, I went home. I went home with my still swollen optic nerves, no promise to ever see right again, a sore back, and several doctors to see. My Neurologist put me on two medications: Diamox and Topamax. Diamox is pretty standard with Pseudotumor Cerebri. At it’s most basic, it acts as a diuretic and helps your body drain off the excess spinal fluid. Topamax is a migraine medication with some rippin’ side effects. For example, anorexia is a side effect. Topamax makes all carbonated beverages taste like you have garnished with rebar and a few pennies. It’s disgusting. However, since some severe headaches can accompany Pseudotumor, it is a must for some.

These two medications have some additional nasty side effects and it takes a while to get used to them.  You can read more about them below:

• Diamox
• Topamax

Recovery

My prognosis was questionable. While Pseudotumor Cerebri is not necessarily life-threatening, it can cause blindness. My doctors made no promises regarding the blurry state of my vision. I really couldn’t see anything outside of 18 inches of my vicinity with any clarity. Not to mention, I had to force-feed myself because I was trying to get used to the medications. For a while, I felt like I was going crazy. Foods that I loved were a chore to consume and I had to fight my gag reflex every bite. It was a month before my eyes had healed enough to see beyond my 18-inch realm and my vision began to return. I returned to work and was able to drive again.

With my symptoms relatively under control with medication, my recovery continued in an upward motion. Because of the sheer duration of the pressure on my optic nerves, a small portion of them had died due to lack of blood flow. I do have some blind spots, but am able to function normally in life by the grace of God. I’ve had about 10 LP’s since that first one…some better than others. At this point, I am able to recognize the symptoms of my condition and know when an LP is necessary. It has been a ride.

I just began seeing a new Neurologist since I’m home in North Carolina now. He said a couple things I really liked: #1 Pseudotumor lessens with age, so it could disappear at any time, and #2, he is actually looking for a cause and attempting to rule out various things such as a congenital narrowing of the veins that drain blood from my head. I’ll keep you updated.

Do You Suffer From Pseudotumor Cerebri?

If you would like to contact me and talk about it, you can reach me several ways from my Contact Page.

I’m kinda jumping the gun with this post as I have a half-started series on this subject. However, sometimes the needs of the writer to get down the details before they fade outweigh the order. I’ll skip the back story here since that series will hold that information.

The Minor Details

• Diagnosed in February 2007 with IH
• I take 500mg of Diamox per day (extended release caps)
• 5 lumbar punctures (not counting misses; 6 misses)

The Story

I went to the ER for the second time this week yesterday seeking a Lumbar Puncture (LP) to relieve my intracranial pressure. I let them finagle me into taking the “drug cocktail” the day before instead of the LP. Seriously, who wouldn’t rather take a few drugs instead of getting a stab in the back?

What’s In a Cocktail?

• Compazine (Prochlorperazine) – “Prochlorperazine suppositories and tablets are used to control severe nausea and vomiting. Prochlorperazine tablets are also used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions). Prochlorperazine tablets are also used on a short-term basis to treat anxiety that could not be controlled by other medications. Prochlorperazine is in a class of medications called conventional antipsychotics. It works by decreasing abnormal excitement in the brain.”

I am at a loss as to why I would be given this drug. Like so many other drugs, perhaps it does more than the things for which it is most commonly prescribed. There’s definitely some “abnormal excitement” in my brain sometimes.

• Decadron  (Dexamethasone) – “Dexamethasone, a corticosteroid, is similar to a natural hormone produced by your adrenal glands. It often is used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Dexamethasone is also used to treat certain types of cancer.”

This one makes a little more sense to me. This stuff is evil in its injected form. It makes your privates feel like pins and needles on fire. Just when you think you’re going to have to come up off the bed and scream/do something about the burning, it starts to ease off and eventually stops altogether within just a few minutes.

• Benadryl (Diphenhydramine) – “Diphenhydramine is used to relieve red, irritated, itchy, watery eyes; sneezing; and runny nose caused by hay fever, allergies, or the common cold. Diphenhydramine is also used to relieve cough caused by minor throat or airway irritation. Diphenhydramine is also used to prevent and treat motion sickness, and to treat insomnia (difficulty falling asleep or staying asleep). Diphenhydramine is also used to control abnormal movements in people who have early stage parkinsonian syndrome (a disorder of the nervous system that causes difficulties with movement, muscle control, and balance) or who are experiencing movement problems as a side effect of a medication.  Diphenhydramine is in a class of medications called antihistamines. It works by blocking the action of histamine, a substance in the body that causes allergic symptoms.”

No idea why they stick this one in there unless it is to offset the effects of the other medications. I’ve never questioned the cocktail because it’s not like I’m going to the hospital to ask for it by name. The first time I received it, it alleviated my symptoms for about 3 days. It felt like I’d had an LP. That was not the case this time.

So…I arrived at the ER and was taken straight to a room. The nurse comes in and gets the low down. Then she says, “So, are you just looking for another cocktail to tide you over until you can see your doctor?”

I said, “No ma’am, I am not. I’m looking for relief and I don’t think the drugs are gonna do it. Besides they made me feel crazy.”

Yes, yes…forgot to tell you that part. Aside from wanting to sink into a month-long coma from the liquid Benadryl pulsing in my veins, I also had this odd feeling that I couldn’t relax. I felt paranoid…like I needed to get up and run out of the hospital. Trying to keep my wits about me prevented any sort of coma until I got home later. Then I woke the next morning seeing blue circles with a violent headache marching with fury through my brain. Back to the ER.

Then the doctor, a resident, comes in and is talking with me. He says, “I’m going to examine you now.” He shines a light in my eyes, listens to my heart and lungs, has me lay down while he presses on my stomach as he’s looking at the ceiling. Then he squeezes my legs looking for fluid retention…again while looking at the wall. I’m thinking, “Did this guy just graduate yesterday?”

Then he starts going on about how my “headache” seems to have improved. Well, yeah, because I popped three ibuprofen before I came just to keep my brain from leaping out of my skull. Ibuprofen masks the problem…no leaving until you fix me. His senior doctor finally came in and talked to me. He asked me a few questions about what had worked in the past and for how long. After that, the LP was on.

The next time Senor Resident came in to tell me the LP was on, I asked if he was doing it. He answered in the affirmative which led to a few more questions and comments. “Have you done one before?”

“Yes.”

“Did you hit it on the first try?”

“Yes.”

“Alright, you get two sticks…each one after that will cost you $60 each.”

I actually got a smile out of Mr. Personality.

The Greatest Not So Great LP

Our resident shows up with his accoutrements and an attending physician…the “do this, not that” person in the background. He has me assume the tight fetal position on my left side. This position makes it difficult to breathe and comfort is definitely out the window as well. He swabs my back with Betadine as the Attending is saying, “Just paint it on.” A small red flag went up in my head at this moment, but I didn’t have a lot of time to think about it because, well, I’m about to get a Spinal Tap. I’m shaken, sweating, and uncomfortable.

“I’m going to start with some pain medication…big stick…”

The “big stick” wasn’t so bad. I’ve had LPs where people needed lessons on the proper pain med technique…mainly that they should avoid the “deep jab and inject” technique and stick to the “tiny prick and squirt” technique first. At least, this guy had that part. The pains meds weren’t so bad. I thought he could have spent a little more time with the numbing process, but like me, I’m sure he just wanted this over with.

The First Stick

It’s difficult to remember the minute details of each individual stick since they all kinda run together in my head. Not to mention, they don’t exactly announce to you that they’ve failed and are going in a second, third, fourth, FIFTH time. The first stick is usually a tangible reminder of how unpleasant LPs really are. If you are lucky, they hit their goal on this stick, and you are quickly and quietly left with a memory and a sore back. If it’s moderately bad, this stick is accompanied by some gouging and some odd nerve sensations that fall in line with a root canal on the “pleasant” scale.

In all reality, it feels as though they are scraping the inside of your naval with the tip of their not-so-small needle. At this point, I begin to moan. This is the second time I have ever verbally protested an LP. Moaning is slightly less weak than outright screaming…and doesn’t include expletives. It’s more of an ooh ahh kinda thing. The Attending asks, “Where does it hurt: back or legs?”

“Uuuuuummmm…I’m not really sure….back.” When people are messin’ with your Central Nervous System, your sense of where can become skewed. Finally, I just made up my own spot…”Hip!” It did kinda feel like they were drilling into my hip bone.

Stick #2

Finally, they pull the needle out. As I said, they don’t announce it….I’m not sure why. What am I going to do? Jump up on the bed and threaten them to “Put up their dukes”?  Sweat has covered the rubber pillow they placed under my head before they started. Another tiny flag I didn’t question at the time…shouldn’t there be a pillowcase? I hope it’s a throwaway. The ER is gross…all those sick people. My brother is a nurse, his work shoes never enter his house. That speaks volumes. Here we go…round 2. The needle goes in…I feel the familiar “pops” as it passes through my tissues. I know it’s gross, but the pops mean they are on the right track, so I welcome them. It’s a repeat of the last performance…lots of gouging following by moaning and more sweat. I’m shaking now.

Third Time’s The Charm? Not.

And it’s back in for a third time. This time, I feel the needle pop through the surface of my skin. It felt like it sank in about 4 inches before slowing down at all. “That felt gross.” I said. Residente says, “It was the needle going in your skin.”

No s***! Did you know I’m counting and that’s THREE!?! Ugh. I’ve decided at this point that they’re killing me. Moan moan sweat sweat. The needle comes back out. “We are going to numb you up some more and hopefully make you a little more comfortable.”

“Ok, because this is ridiculous.”

Enter the nice nurse in the mask and gloves who covers the rubber pillow with a cotton sheet and grabs my hand. “Thank you.”

Four For The Girl Waiting At The Door

After a gouging round of pain meds…here we go again. Gouge gouge moan moan sweat sweat squeeeeeze the nice nurse’s hand…for about 10 minutes. Then they say, “Have you ever had one of these sitting up.”

“No, in fact, I’ve only had one that was successful without x-ray assistance.”

“Ooooh.”

Yeah, OH!, you mofos! I’m dyin’ here.

Needle comes out and the Attending says, “Ok, I’m gonna give it a try, and if we can’t get it, we’ll call Radiology.”

I’m too zapped to disagree…to stand up and say, “I’ve had enough!” I’m tough, we can do this!

Five To Stay Alive

So after about 30 minutes of the LP equivalent to the Iron Maiden, the needle goes in a final time and what do you know? Taps it the first time and we’ve got fluid exiting the body at last. I breathe…I shake less…I sweat less. It’s all but over. One final uncomfortable disengaging of the needle, a bandaid, and I’m done.

This was by far the worst. I’ll definitely be making a solid effort to get hooked up with a Neurologist so I can hopefully avoid this ever happening again. LPs without x-ray should be reserved for criminals. Whew! That doctor owes me 180 bucks.

Read my other posts about Intracranial Hypertension HERE.

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/

In February of 2007, I was heading up a big project at my job…that’s what we called it, “The Big Project”. We worked for hours gathering new materials for company policies and procedures that we hadn’t yet documented. It meant long hours in front of the computer, and my body began to show the signs. Mainly in the form of what I thought was eye strain. I was experiencing some intense headaches that mainly centered behind my eyes and were only relieved with copious amounts of Ibuprofen and a warm washcloth for a couple hours in the evening.

At that point, I decided I was way past due to get my four-year-old eyeglass prescription updated. Just prior to the appointment, I noticed my left eye starting to turn inward a little. I mentioned this to my Optometrist and she told me that if the problem was not corrected with my new glasses to come back. I decided that it might be in my best interest to have an Ophthalmologist look at my eyes. I went through my insurance website and found one nearby. I set up an appointment.

I went in and explained what had been going on. The doctor looked into my dilated right pupil and expressed concern. He quickly moved to my left eye and peered in. He said something about a tumor and left the room. I looked at my partner at the time and said, “Are you ready for some kinda of tumor thing because that’s what he just said?” My mind began to race understandably. I had no idea what I was about to be faced with, but it sounded bad, if not life-threatening. It didn’t even register with me that the doctor had left the room and rather left me hanging.

He returned in a few short minutes and began to explain what was going on. Pseudotumor Cerebri is a buildup of cerebra-spinal fluid in the head. It is called “pseudotumor” because it has the same effect on the brain as if a mass were present. The problems with my eyes were being caused by this buildup of fluid pressing on my optic nerves. He set up an appointment for me with a Neuro-Ophthalmologist and I would be going to seem him within the next couple days to figure out the next action to take.

Whew! This was all a lot of scary information to take in. I was pretty clear on what was going on, but everything was happening so fast. I had no idea what lay ahead and that the treatment that should have taken place would not happen in time.

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