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Old 04-05-2012, 05:36 PM #1
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MeredithAncret MeredithAncret is offline
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Join Date: Apr 2012
Location: Arizona
Posts: 7
10 yr Member
MeredithAncret MeredithAncret is offline
Junior Member
MeredithAncret's Avatar
 
Join Date: Apr 2012
Location: Arizona
Posts: 7
10 yr Member
Unhappy Looking for people who will understand what I'm going through.

My name is Meredith, I'm 21 and studying political science at university.

Last year, before I went back to college, I was diagnosed with pseudotumor cerebri.

I've had mild, annoying, headaches almost constantly since junior high. I would get the occasional migraine, suffer through it, and move on.

In high school my mother and I thought we discovered the cause of these headaches, as we realized that I was allergic to a common food dye used in processed snack foods (Red #40) which caused nausea, vomiting, and migraines if I ingested too much of it. My family changed their eating and shopping habits to protect me and some of the headaches stopped.

At 20, I was working full time and I moved out. I was still getting migraines about 3 times a month or so and these were bad migraines. Sensitivity to light that was so high that I had to cover my head completely and block out all light. Sensitivity to smells and sounds that caused me to shut myself up in my room for hours. I had to force myself to go to sleep every time as that was the only way to stop them. They were like no migraines I had ever had before. I could literally feel the pressure building in my brain, feeling like my eyeballs were going to shoot out of my skull.

Slowly, over a period of 6 months, the number of migraines and severity ratcheted up to about 1 a week, sometimes 2. They started effecting my ability to work and my parents finally insisted I go to the doctor after they had to pick me up at work, where I had locked myself in a bathroom with the lights off, after throwing up several times.

My mother, an optometrist, started by checking my eyes and found that my optic nerve was severely swollen and a check of my visual field showed several massive gaps in vision.

I went to a neurologist who finally diagnosed the problem, after 2 MRIs and a Lumbar Puncture. I was put on Diamox, which is the traditional treatment, as well as Topamax for the non-pseudo tumor migraines that I also had.

He reduced the dosage after several months and I stopped the Topamax altogether, as it had no more effect than a bottle of Excedrin and it slowed my thought processes a lot.

Eventually my neurologist told me to stop taking the diamox for a time, to see what would happen. As PTC can stop being a problem suddenly, just as it can start suddenly.

I was a bit over-zealous and remained off the drug for MONTHS. It was amazing to not deal with the side-effects of the drug, the lethargy and lack of appetite, and I had no problems with pressure related migraines. I took over the counter Excedrin for the average migraine.

However, just a few weeks ago the PTC migraines came back with a vengeance. Luckily I was staying with my parents at the time and they were able to go fill my prescription, which was luckily still valid, and I have been fine since I started taking Diamox again.

Unfortunately the side-effects are back too.
While my friends don't want me to be in pain, they also don't understand why I never have any energy to hang out with them anymore. The lethargy is affecting my schoolwork because I just really can't muster up the energy to care about the socio-economic repercussions of China's communist government, when it's all I can do to even get out of bed in the morning anymore.

Sadly, I think it's more than just the medication causing this...I think it's the general hopelessness that I feel when I think of living like this for the rest of my life. As far as my neurologist knows, there is no "cure" for this. I worry that I'll spend the rest of my life in a lethargic haze where everything that I listed as my "hobbies" on this site (except for watching TV) just seems like too much work, to much effort, to try to do.

I don't think any of my friends or family can really understand that.

Sorry for the long intro, I'm just feeling a bit more despondent than usual today.
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