When my neurologist first said she thought I had pseudotumor cerebri, I went home and googled it. I definitely experience the symptoms associated with it. However, I pretty much talked myself out of it and convinced myself that my headaches were merely migraines. I didn't take it very seriously. Last night I googled again so that I could figure out how to go about treatment. Unfortunately, it's more serious than I thought.
To save you time from googling yourself, here is a compilation of explanations.
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SourcesMichael Wall, MD - The University of Iowa, Department of Neurology and Department of Ophthalmology and Visual Sciences
Mayo Clinic
Wikipedia
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DefinitionPseudotumor cerebri, or idiopathic intracranial hypertension, is a neurological disorder that occurs when the pressure around the skull is increased. Symptoms mimic those of a brain tumor, but no tumor is present.
Symptoms
- Headaches
- From Dr. Wall - "Headache is present in nearly all patients with IIH and is the usual symptom for which patients seek medical attention. The headaches of the IIH patient are usually severe and daily; they are often throbbing. They are different from previous headaches, may awaken the patient and usually last hours. Nausea is common, vomiting less so. The headache is often the worst head pain ever experienced."
- Nausea, vomiting, dizziness
- Blurred vision
- Brief episodes of blindness (transient visual obscurations)
- From Dr. Wall - "Visual obscurations are episodes of transient blurred vision that usually last less than 30 seconds and are followed by full recovery of vision. Visual obscurations occur in about 3/4 of IIH patients."
- Double vision
- Seeing light flashes
Causes/Risk Factors
The exact cause is unknown. Pseudtumor cerebri occurs in about 1 person per 100,000; during periods of weight gain, younger women in childbearing ages are more likely to develop the disorder. Certain medications have been linked to the disorder, including oral contraceptives and tetracycline (there are others, but there is a reason I'm only including these two).
Complications
From Mayo Clinic - "As many as 10 percent of the people with pseudotumor cerebri experience progressively worsening vision and may eventually become blind. Even if your symptoms have resolved, they can recur - months or even years later."
From Dr. Wall - "When the optic nerve fibers are under pressure, their microcirculation or blood supply is also under pressure. This results in decreased blood flow to the optic nerve, damage to the nerve and resultant visual loss."
Treatment
From Wikipedia - "The primary goal in treatment of IIH is the prevention of visual loss and blindness, as well as symptom control."
Treatment typically begins with medication to control the symptoms. The most common medication is Diamox, a glaucoma drug with possible side effects of stomach upset, fatigue, tingling of the fingers, toes and mouth (experienced by nearly all patients), and kidney stones.
A lumbar puncture (spinal tap) is also recommended as the first step in symptom control. The cerebrospinal fluid is drained, releasing the pressure on the skull.
And of course, weight loss.
Lasting Statement
From Dr. Wall - "Unfortunately, IIH is a life-long disease."
Do you know how absolutely horrible it is to read those words? To say that I was an emotional wreck last night would be an understatement. I experienced all sorts of emotions - shock, disbelief, guilt, blame, anger, scared, sad, determined.
"Why me?" was definitely the question I kept asking myself last night. Look, I'm not going to kid myself - I should definitely lose weight. I've always been a bigger girl. But I was angry last night at all the other fatties that I know who aren't going through this. I know females bigger than me, less active than me... and yet I'm the one who could eventually go blind.
I mentioned two medications that are linked to the disease - oral contraceptives and tetracycline. What sucks is that I was on both medications at the same time. In August of 2008, my dermatologist prescribed me minocycline, a version of tetracycline, to help with painful facial cysts that kept popping up every other week. In January 2009, the symptoms of pseudotumor cerebri started.
And I realize how stupid I sound. Some people are probably thinking "ooh, a life-long disease in which she has headaches every day... big deal." I know that I'm lucky that I don't have a more serious disease/disorder. And I'm so thankful for that. But at the same time, I can't deal with what I've been experiencing for the last couple of years, more so this past year. Headaches so painful that I wish my head would just explode and I could be done with the pain; driving home from work feeling nauseous the entire way and running to the bathroom to throw up as soon I walk inside; randomly losing sight while driving, only to snap out of it and find that I'm about to hit a wall. Again, not the worst symptoms one could have, but miserable and scary nonetheless.
My plan of attack
The exact cause is unknown. Pseudtumor cerebri occurs in about 1 person per 100,000; during periods of weight gain, younger women in childbearing ages are more likely to develop the disorder. Certain medications have been linked to the disorder, including oral contraceptives and tetracycline (there are others, but there is a reason I'm only including these two).
Complications
From Mayo Clinic - "As many as 10 percent of the people with pseudotumor cerebri experience progressively worsening vision and may eventually become blind. Even if your symptoms have resolved, they can recur - months or even years later."
From Dr. Wall - "When the optic nerve fibers are under pressure, their microcirculation or blood supply is also under pressure. This results in decreased blood flow to the optic nerve, damage to the nerve and resultant visual loss."
Treatment
From Wikipedia - "The primary goal in treatment of IIH is the prevention of visual loss and blindness, as well as symptom control."
Treatment typically begins with medication to control the symptoms. The most common medication is Diamox, a glaucoma drug with possible side effects of stomach upset, fatigue, tingling of the fingers, toes and mouth (experienced by nearly all patients), and kidney stones.
A lumbar puncture (spinal tap) is also recommended as the first step in symptom control. The cerebrospinal fluid is drained, releasing the pressure on the skull.
And of course, weight loss.
Lasting Statement
From Dr. Wall - "Unfortunately, IIH is a life-long disease."
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"Life-long disease"Do you know how absolutely horrible it is to read those words? To say that I was an emotional wreck last night would be an understatement. I experienced all sorts of emotions - shock, disbelief, guilt, blame, anger, scared, sad, determined.
"Why me?" was definitely the question I kept asking myself last night. Look, I'm not going to kid myself - I should definitely lose weight. I've always been a bigger girl. But I was angry last night at all the other fatties that I know who aren't going through this. I know females bigger than me, less active than me... and yet I'm the one who could eventually go blind.
I mentioned two medications that are linked to the disease - oral contraceptives and tetracycline. What sucks is that I was on both medications at the same time. In August of 2008, my dermatologist prescribed me minocycline, a version of tetracycline, to help with painful facial cysts that kept popping up every other week. In January 2009, the symptoms of pseudotumor cerebri started.
And I realize how stupid I sound. Some people are probably thinking "ooh, a life-long disease in which she has headaches every day... big deal." I know that I'm lucky that I don't have a more serious disease/disorder. And I'm so thankful for that. But at the same time, I can't deal with what I've been experiencing for the last couple of years, more so this past year. Headaches so painful that I wish my head would just explode and I could be done with the pain; driving home from work feeling nauseous the entire way and running to the bathroom to throw up as soon I walk inside; randomly losing sight while driving, only to snap out of it and find that I'm about to hit a wall. Again, not the worst symptoms one could have, but miserable and scary nonetheless.
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The news was definitely a wake-up call. Well, first of all, let me go off on a tangent. Just because I don't eat fruits and veggies doesn't mean that I sit around eating crappy foods. I don't keep soft drinks in my apartment. There are times that I pick up some ice cream or cookies, but I never end up finishing them. I have binges where I have a sweet craving, take one or two bites, and then throw the rest away. Yes, I realize this is a waste. But I try as much as possible not to keep temptations around. Breakfast is Honey Nut Cheerios. Lunch is a usually a sandwich, or sometimes no lunch at all... and of course there are lunch outings with co-workers. My dinner is usually a grilled or baked piece of chicken, whole wheat pasta measured out, a bit of sauce measured out, single serving size brown rice, etc. I do have my occasional Whataburger or McDonald's dinner - who doesn't. I now actually eat veggies at restaurants. I find that I like them a lot. However, I have tried cooking/grilling them myself, and they just don't taste very good. This ends up discouraging me. But yes, I'm sick of people thinking that just because I have a lack of fruits and veggies in my diet that I'm just surrounded by junk food. My plan of attack
- Diet - Start making menus on Sunday morning for the week and be more conscious about my food choices, making sure that portions are right and that there is a balance. Since I haven't mastered the art of preparing veggies - or for that matter, picking them out at the grocery store - I need to start perusing the already-prepared section of Whole Foods. Do they have prepared veggies there? If so, then each day on the way home from work, I can stop and grab a container and incorporate them into my dinner. I realize this will probably start to get expensive, but I feel that it is the best option for me at this time. If I keep trying to prepare them myself and not like the taste, I will just eliminate them completely like I've been doing. So for now, this sounds like a good idea.
- Work out - I already play volleyball a couple of times a week. One of my goals for the year is to run the Cap10K again this year. I need to make more of an effort to run/walk after work. I was doing good with this over the summer when I decided to do the Couch to 5K program. I just need to get back into it. I'm toying with the idea of setting my alarm earlier in the morning and going to the gym at my apartment. I don't really like gyms and membership costs associated with them, so I'm avoiding that option.
Disclaimer: I haven't been very good about saying no to going out to eat and things like that. I hope everyone understands that I need to start making my health a priority, and so I will probably start turning down lots of lunch/dinner invites... not all invites, but definitely not accepting every one either.
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I need to schedule another appointment with my neurologist and discuss further treatment. I'm trying so hard to avoid the spinal tap, but I'm not sure how much longer I can do that. My health insurance is a high-deductible plan. Basically, I have to pay out of pocket until I reach my deductible, which is about $3,500 or $4,000 (can't remember - it just went up in January). After that, then everything is free. Now would be the best time to do the procedure. I would probably hit my deductible, then I could have all doctor appointments and medical procedures covered for the rest of the year. But coming up with that cost up front is proving to be difficult. Let's not forget... I work for a non-profit.
I also need to hit up the ophthalmologist again. My visual field test was abnormal, which is a sign that the peripheral vision is starting to go. I need to keep testing so that we can see the effect on my optic nerves and discuss treatment to prevent visual loss.
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So there you have it, pseudotumor cerebri.
Some quotes from the site...
"It is frequently a life-long illness with significant physical, financial and emotional impact."
"The headache that accompanies IH is unbearably painful and, most notably, is not relieved by any migraine, conventional headache or pain medication. It has been described as the worst headache ever."
"An actual episode of headache may last hours, days, even weeks. Many people with chronic IH live with daily headache that never truly goes away."
"In some idiopathic cases, weight loss can bring about a remission and therefore should be encouraged. But in other idiopathic cases, weight reduction does not make a difference."
"Chronic IH is unpredictable, which means that there will be good days and bad ones for the person who is ill. It's hard to know what your friend or family member will feel like or what tasks he or she will be capable of."
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Update: Since posting this blog, I have learned from further research that it's more commonly referred to as IH (intracranial hypertension) and that pseudotumor cerebri is an old term. And I found that there is a foundation - Intracranial Hypertension Research Foundation. I fall under the category "chronic IH."Some quotes from the site...
"It is frequently a life-long illness with significant physical, financial and emotional impact."
"The headache that accompanies IH is unbearably painful and, most notably, is not relieved by any migraine, conventional headache or pain medication. It has been described as the worst headache ever."
"An actual episode of headache may last hours, days, even weeks. Many people with chronic IH live with daily headache that never truly goes away."
"In some idiopathic cases, weight loss can bring about a remission and therefore should be encouraged. But in other idiopathic cases, weight reduction does not make a difference."
"Chronic IH is unpredictable, which means that there will be good days and bad ones for the person who is ill. It's hard to know what your friend or family member will feel like or what tasks he or she will be capable of."
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It would seem that it's time for me to take this more seriously.
Sorry to hear about the diagnosis, but on the bright side at least you know what it is and potential ways to get better.
ReplyDeleteyikes, kristy! how scary! lifelong disease is a tough bullet to bite when you're only in your mid-20s. i think i went through all the same emotions when i was diagnosed with thyroid disease. the very good news is that you have a plan of attack and there will be ways for you to both reduce and manage the disease.
ReplyDeletei'm glad they're catching this now so you can make changes in your lifestyle. just think about all the fatties you mention who may not have a disease now but will eventually develop diabetes 2 if they continue to let themselves go. that is a very debilitating disease where some lose a leg or a foot!
as for incorporating veggies, i find stir frying is pretty easy. buy whatever veggies you enjoy: zucchini, bell peppers, bok choy, whatever. mince some garlic and throw them in some olive oil until they get really fragrant and start to brown a little. throw in the chopped veggies and add a sauce on top (a splash of soy sauce, teriyaki sauce, anything really).
keep us updated on your progress. you've got lots of supporters.
:( Tough news.
ReplyDeleteIf you ever want to try Jazzercise, you can come with me! It is a monthly fee but it's much more affordable than gyms or yoga studios, and it's easy to get in a routine and feel accountable. I also want to start running if I can find time to fit it in my schedule.
And you know I'm in the same boat with trying to incorporate more veggies in my diet! The Ziploc steam bags are an easy way to prepare things like green beans.
I'll be thinking of you!