Saturday, May 7, 2011

Better Living Through, PTC and "Magic P"......

This is another one of those posts that I have gone back and forth on, I can never figuring out the line on when I am sharing too much or not enough, but since I know I have many friends in the same boat as I am, here I go again.

I have talked about this before in the blog, but for those who havent been reading that long. I am one of the millions of people in the world with a "hidden" chronic illness. Unless you knew me well you would never know I have lost my sight multiple times, had meningitis twice, had 5 eye surgeries, 4 shuts, and went through a period of time where I was undergoing weekly spinal taps (around 90 in total and hospitalizations every week or two.

To the outside world I look normal, but in 1991 I was diagnosed with Pseudotumor Cerebri (PTC) also known as Idiopathic Intracranial Hypertension or Benign Intracranial Hypertension. Essentially for some reason my body make or retains too much of the fluid around my brain, spine and optic nerves and when it is out of control it results in the same symptoms as a brain tumor (without really having a tumor). I think I have had it since I was at least 10 or 12 but it was diagnosed at age 21. The cause is unknown and I truly believe there are a bunch of different causes for different people (that it is more of a syndrome than one disease) which is why one treatment hasnt worked for most and why there are so many possible causes documented.

Luckily for me in 1996 I was in a position (my first career was in bio-med research before I got sick and once I did I switched to actually studying PTC) to accidently find the answer to my PTC. Long long story short, I have a set of enzymes in my liver which dont work right. When I take the wrong medication or eat the wrong food it kicks off a whole series of problems which cascade into decreasing the serotonin in my brain...resulting in too much cerebrospinal fluid production and also often depression (serotonin is one of a group of chemicals our body uses to regulate our moood, sleep, hunger and a ton of other things).

That finding in 1996 led to me being treated successfully with a drug called Parnate (Tranylcypromine). Parnate is a monoamine oxidase inhibitor (MAOI) which is an old class of anti-depressants that actually work at the liver level instead of the brain level and work well at stopping the chain of events that sets off my PTC. When I started Parnate in 96 within 3 days the symptoms I had lived with daily for 5 years disappeared. We started calling it "Magic P" because of what it did for me, and later other PTC patients.

Parnate, all MAOI's, are not without HUGE risk (which is why they arent used much). Being on one means sacraficing eating many foods, and taking many medications and being very vigil to my blood pressure - simply eating a bite of the wrong food can send it to a lethal level!!!! But for me the risk and costs were worth it. Total remission almost instantaneously. I stayed on Parnate until 2002. When I was able to successfully come off it and manage my PTC by avoiding certain foods and medicines that cause my enzymes to go off kilter again. I have had essentially 15 symptom free years!

Unfortunately I was not careful enough this year, and started 2 supplements in February without fully researching them, and my PTC flared. It wasnt too bad as far as most of my physical symptoms, but it was enough to know it was back. But the worst part was it sent my mood spinning again.

Now dont get me wrong, PTC is not the cause of all the current stress in my life. But the reality for me, even if I dont like to face it, is that I am prone to chemically induced depression and when it is out of control (when my Serotonin is too low) everything that I might normally struggle with, like my eating disorder, is magnified 10000000 times over and becomes much bigger than it should be.

That is where I have been the last month or two. Not only fighting my ED but also the emotional effects of my PTC being back. And I was sinking deeper and deeper into it.

Despite logically knowing all that, I fought a medication answer. As much as I know that for me taking this medication is no different than taking an anti-biotic for an infection or taking chemotherapy to treat cancer, I get very hung up in what will people think of me if they hear I am on an anti-depresant. I find myself being VERY quick to defend it being for PTC not for depression. I also fight medication for as dumb as it sounds, it feels like a cop out to me. It is treating something I should be able to fix somehow myself without the help.

But luckily I am surrounded by some really good people right now, who have figured out how to kick me to do the right thing when I dont want to. This past week we restarted the Parnate, and I have to admit now that it has kicked in I feel like a fool for struggling this long when there was an answer out there for me.

I feel better in the last couple days energy wise and mood wise than I have in a long time. Looking back I almost wonder if something spurred my PTC months ago, before the supplement issue, and it has been out of wack at a low grade for most of the last year. I know I havent felt like myself in a very long time, physically or emotionally, and it has been nice this weekend to see shades of me again.

I still have a lot of work I need to do, none of this erases the mess I have with my eating, but I do feel like it is helping me at least be better able to face that and at least consider the help of the people around me!!!!!

Today was the first good weekend day I remember in a long time...I got my hair done, went for a walk in the park, had a massage, came home and cooked and froze some meals. It is the first Saturday in a year that I didnt end up on the couch vegging. It felt really nice to be part of the human race again!!!!!!!

I know many people are like me, we fight the use of medication, particularly when it is for mood issues, but the lesson in all this and why I decided to that depression IS chemical, it IS an imbalance in the body, it IS a disorder/disease and getting help is no less valid than going in for a broken arm or stitches. Society has marginalized mental health care, but the reality is there really is no difference between "regular" medical needs and psychological medical needs. It is not something any of us has done wrong, or any flaw we are responsible for. Our moods are a reflection of what is going on in the chemistry in our bodies!!!!!!!!

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