Intro continued

Picking back up where I left off...

I spent a half hour crying in my car and called my dad. I needed someone to talk to! He didn't have too much luck calming me down, but off I went to grab a quick bite to eat and then headed to Condell to go get that lovely MRI. I won't go into details on the MRI, it was rather uneventful--a typical MRI it was of the brain and orbits (eyes). And off I went. I had to wait a week to find out the results because that was the soonest I could get in with the neurologist.

I made my dad take the day off of work to come with me to the neurologist. Despite being 26 and an adult, it's a scary thing to go through and I needed that support, so he was more than willing to come with me and ask the questions that I couldn't get the courage to ask. The neurologist didn't spend a whole lot of time with me, took a look at the MRI results and after hearing my symptoms said he felt I had something called pseudotumor cerebri or idiopathic intracranial hypertension. However, in order to be officially diagnosed, I needed one more test to confirm his hypothesis....I needed a "lumbar puncture." And you know, I just figured it was some other easy test but that's the new word for a "spinal tap" and I swear they do that so they don't freak you out. But guess what....having a huge needle go into your back regardless of the name SUCKS. My opening pressure was 36 and it's supposed to be somewhere around 10-15 I believe. Now, after I have researched this through various websites 36 is high but is certainly not the highest ever been seen, but it's enough to cause extra pressure in your brain and be horribly painful.

So, I guess I'll take a few minutes to really explain what PTC/IIH is. Pseudotumor Cerebri directly translated is a fake brain tumor. No, I'm not crazy and think I have one, but my body is crazy and thinks it has one. I have the same symptoms as someone who has a brain tumor does, but there is no actual tumor present. There are MANY different symptoms that can be presented and no two people with PTC/IIH have the same exact symptoms which makes this a very difficult diagnosis. It's a very rare disease....about 1 in 100,000 people get this, primarily overweight women at a childbearing age. This describes me perfectly--overweight and 26. PTC/IIH if left untreated will cause blindness and vision loss, which is scary! What can I say? This sucks. But, after lots of crying and stress, I'm starting to process what I'm actually dealing with and learning lots about it through research on the internet. There are many great websites out there that describe what PTC/IIH is and information on many different treatments.

My case of PTC/IIH is different than most because I am allergic to sulfa. Thank you daddy. There are basically three steps of treatment....1-a diuretic to help reduce the excess spinal fluid that is pushing on my brain. 2-constant spinal taps to reduce the fluid. 3-some form of surgery to reduce the spinal fluid. Well, we tried step one....that was how I found out I was allergic to sulfa. It runs in my dad's family, so I knew there was the option for it to be there, but had never encountered a problem before. I was on this sulfa-based diuretic for two weeks and it really helped the headaches and dizziness that I had been experiencing, however, I quickly had horrible acne and rashes all over. Luckily it wasn't a more serious reaction, but it still sucked. I called my neurologist back at that point and he told me to stop taking it, but put me on prenisone (a steroid) to assist in reducing the optic nerve swelling. I realize that I'm kind of missing some points here, but I'm not a doctor and can't explain this the best, perhaps if something is confusing to you, you can go to one of the websites and read up about it more.

Most recently, I went to Rush University Medical Center on January 25, 2011 to see a Resident Neurologist. I had a laugh when I heard her name because it was Bernadette and that would be my aunts name--never knew anyone else with the name....but that meant she must be smart! She spent an hour listening to me and my family with our concerns, examining me, and then when she noticed a few odd things with my eyes and felt it was necessary to call her attending neurologist. I keep thinking back to Grey's Anatomy and was hoping Dr. Shepherd would walk in, but he didn't. No Patrick Dempsey for me! The attending doctor spent a half hour with me as well re-examining me to make sure he agreed with the resident and see what they felt the next step would be. At this point, he called the ophthalmologists office two floors down and got me in immediately with a neuro-ophthalmologist to make sure that the optic nerve swelling was not too excessive and that I didn't need emergency treatment. After hours of eye testing with lots of bright lights being shone in my eyes and trying to find the blind spots in my eyes, overall, they said it wasn't horrible. This was a relief. I do have some blind spots in my eyes, but nothing that would at this point prevent me from living a normal life. However, with being allergic to the medication, it's something that needs to be constantly monitored because it could change any minute.

*sigh* Long winded, I know.

The current plan of action is to see the neuro-optho in a month and re-do all the testing and compare the tests to see how it's progressing. In the mean time, I am taking fioricet for the headaches and it does provide relief, but certainly does not take the headaches away. I am being weaned off of the prednisone that I have been on for two months since it's making me gain weight and I am completely bloated. I have major moon face! I did research a bit after seeing all the doctors on Tuesday and think I may have found a couple diuretics that do not have sulfa, so I've got a call in to the neurologist to see if I can take one of those and have the same results. I also want to talk to her because I think I have sleep apnea and need that to be dealt with as well.

Right now I'm dealing with a nasty cold. The prednisone has completely killed my immune system and I can't seem to get healthy, so I'm really looking forward to coming off of that medication. The problem though is that there is a chance that the headaches and optic nerve swelling will increase as I come off of it, so that's a little worrisome. I have cold-induced asthma, so it's been difficult to breathe the last couple days. I'm very congested and since the pressure in my brain is already double what it should be, the coughing, sneezing, and blowing my nose makes the headaches very bad right now.

The good news is that I feel like I have hope of getting better. I know there are lots of horrible days ahead of me, but that's the nature of the beast. There is nothing I can do about that other than taking it in stride and attempting to make the best out of the situation.

So, that's my story.....at least the last three months worth. My goal is to write in here to keep my family and friends updated and hopefully be somewhat of a support for others who have PTC/IIH as well.

This is something I am going to live with the rest of my life, but it will not be the end of me and it will not kill me.

I am going to make it.