Before read my history, know that over 90% of people with PCS recover. I am one of the unfortunate 10%. This month will be my 11th year dealing with PCS. Believe me, I am much better than the first few years. Just have to stay away from the triggers for my symptoms. Anyway, since I've had such a long history with it, I think I can share a few thoughts.
When you are going through a day like you described it is very isolating. No one who hasn't experienced it will not understand. They will try and try to make you feel better but the experience is so unlike anything others have been through. I know what you are feeling. PSC is so horrible - yet no test will show anything is wrong. So as long as you find a good neurologist and get all your tests done...I've had them all...know that you will be OK. The symptoms do mean something is wrong - you have PCS. But try your best to relax. Get plenty of rest and be good to yourself. I am now on Cymbalta. It does not knock me out, but is supposed to give you more energy. My symptoms occur much less than before. I don't think it is a popular anti-depressant to use for PCS, but it just happened to work well for me. If that doesn't work try something else. Accupuncture, craniosacral therapy, massage. Something will help. In the meantime, know that you are not alone, you are not going crazy, and that something will help you.
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Originally Posted by jbanash
Well, I tried the Elavil and it knocked out my headache immediately--I slept for 14 hrs though! I felt like MYSELF for the next two days without taking it, so my dr. told me to discontinue. Yesterday I felt good all day, but progressively started to get fuzzier and fuzzier as the day went on. Today, I felt like I was right back a square one, and I could hardly function. My head hurts where I hit it (over my left eye), and I'm confused and very emotional. I'm so tired of this, so tired of being scared that something is REALLY wrong with me. Am sobbing as I type this. I don't know how much more of this I can take. Am wondering if I did something to hurt my sinus on my left side when I hit my head, as there is a lot of pressure there that worsens when I lie down, and pain behind my eye. I just feel like I have no options and nowhere to turn for help. My dr. doesn't know how to help me, and now wants me to have an EEG. I have no idea how I'm going to get through work tomorrow, and I feel so completely alone and scared. Some kind words would mean a lot to me right now.
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