- Messages
- 7
- Location
- Pennsylvania
Hello This is my first post on PR, but I've done a fair bit of 'lurking', especially in the doctor thread, trying to find one to see me. I think I've found one, but that's for another thread, I suppose.
I have been sick now for over 2 years. My battle with this illness began as mono, which I recovered from to the point that I was able to attend college.
After my first semester on campus (I went in as a sophomore), I had a summer of fatigue, but not too bad or too many terrible symptoms. I guess I had the flu-like tiredness.
Then when I returned for the Fall semester to start my junior year, I started crashing in October with frequent colds, and completely lost normal functionality by Thanksgiving. My friends were walking me to classes just to make sure I would get there without collapsing. I came home at Christmas, planning to spend this year at home working, taking classes. and trying to get my health on track.
The 'taking classes' part has gone remarkably well, despite the huge cognitive issues. I am now a senior and if finances and health allow (which is doubtful), I will graduate next spring. It is getting a lot harder to focus and study for classes, though. I barely passed the last exam I took. The 'working' lasted for about two months before I was forced to admit that I couldn't perform my daily job as well as take classes (getting up at 3 a.m. to be at work by 4 wasn't helping my case any). The 'trying to get my health on track' bit hasn't worked out much better.
I've seen a few doctors. Finallyan osteopath a D.O.* put me on an antiviral for a week. (I looked it up to make sure I spelled it right; I thought it was Valcitrax, but I'm thinking now I must be remembering wrong and it's called Valtrax.) The week I was on the antiviral I had almost normalcy. Then I had a crash period (which was my fault... I was in a wedding and wasn't taking it easy...) and then a period of basically complete normalcy. I felt like a superwoman - taking care of laundry, housework, cooking, and volunteering at my church.
I remember very clearly how the 'window' of 11 days of normalcy ended. I was laying down and I could feel this hand-like presence reaching itself into the back of my head as if it were passing through my skull, and the hand clenched my brain and would not let go.
The feeling of a physical hand inside my head is gone, but the clenching feeling in my brain is not. My brain itself hurts. I have never had this before in the four 'stages' of my illness (mono, summer relapse, Nov 11-June12, or current phase). I have chronic headaches, but... they aren't really headaches. It's just this horrible aching in my brain. I call it 'brain pain' because I have no other word for it. It seems to be part of my PEM, but often it comes with stress as well; very often, it just shows up for no apparent reason.
It's destroying what little social interaction I have. When I get the headache/brain pain I can only tolerate a tiny battery-powered lantern in my room, and I run my fan constantly because simple noises my family makes also irritate the pain. I'm not completely housebound, but my computer is my window into the world, and when I'm not able to use it for texting, Facebook, e-mails, etc., it really kills. It takes a lot to admit to my best friend, "I'm sorry; I know I said we could Skype tonight, but I can't anymore."
I'm wondering - has anyone else had this 'brain pain'? Is there anything you've found that helps relieve it? I usually lie down, especially if it makes me feel dizzy. Sometimes ibuprofen seems to help, but I don't want to take that constantly, so I usually only take two or three when it gets to be unbearable.
*Edit: I stand corrected; apparently 'osteopath' should technically refer to a cranial osteopath. This was just a D.O., not a cranial osteopath.
I have been sick now for over 2 years. My battle with this illness began as mono, which I recovered from to the point that I was able to attend college.
After my first semester on campus (I went in as a sophomore), I had a summer of fatigue, but not too bad or too many terrible symptoms. I guess I had the flu-like tiredness.
Then when I returned for the Fall semester to start my junior year, I started crashing in October with frequent colds, and completely lost normal functionality by Thanksgiving. My friends were walking me to classes just to make sure I would get there without collapsing. I came home at Christmas, planning to spend this year at home working, taking classes. and trying to get my health on track.
The 'taking classes' part has gone remarkably well, despite the huge cognitive issues. I am now a senior and if finances and health allow (which is doubtful), I will graduate next spring. It is getting a lot harder to focus and study for classes, though. I barely passed the last exam I took. The 'working' lasted for about two months before I was forced to admit that I couldn't perform my daily job as well as take classes (getting up at 3 a.m. to be at work by 4 wasn't helping my case any). The 'trying to get my health on track' bit hasn't worked out much better.
I've seen a few doctors. Finally
I remember very clearly how the 'window' of 11 days of normalcy ended. I was laying down and I could feel this hand-like presence reaching itself into the back of my head as if it were passing through my skull, and the hand clenched my brain and would not let go.
The feeling of a physical hand inside my head is gone, but the clenching feeling in my brain is not. My brain itself hurts. I have never had this before in the four 'stages' of my illness (mono, summer relapse, Nov 11-June12, or current phase). I have chronic headaches, but... they aren't really headaches. It's just this horrible aching in my brain. I call it 'brain pain' because I have no other word for it. It seems to be part of my PEM, but often it comes with stress as well; very often, it just shows up for no apparent reason.
It's destroying what little social interaction I have. When I get the headache/brain pain I can only tolerate a tiny battery-powered lantern in my room, and I run my fan constantly because simple noises my family makes also irritate the pain. I'm not completely housebound, but my computer is my window into the world, and when I'm not able to use it for texting, Facebook, e-mails, etc., it really kills. It takes a lot to admit to my best friend, "I'm sorry; I know I said we could Skype tonight, but I can't anymore."
I'm wondering - has anyone else had this 'brain pain'? Is there anything you've found that helps relieve it? I usually lie down, especially if it makes me feel dizzy. Sometimes ibuprofen seems to help, but I don't want to take that constantly, so I usually only take two or three when it gets to be unbearable.
*Edit: I stand corrected; apparently 'osteopath' should technically refer to a cranial osteopath. This was just a D.O., not a cranial osteopath.