Alright, so my tale begins when I was fairly young so the details are hazy. It all started with dizzy spells. I remember being no more than eight and slumping into the hideous orange shag carpet of the hallway. It had a hallway and being a trailer the light would bounce of the siding and in through the window so that walking down the hall was always blinding. It made me feel sick to my stomach and sick to my head. Then in the merry days of sixth grade I got very sick. I slept for 3 days, prompting my mom to take me to the hospital where I spent the week. I was disoriented and thought every day was Wednesday for some reason. I didn't at much, limbs were weak, speech was difficult, and when I was released I couldn't walk. Physical therapy took me from a wheelchair to crutches to my own two feet near the end of the school year. The doctors, finding nothing in the blood tests or the MRI and no doubt reflecting on my parents lack of health insurance, settled on Chronic Fatigue and Depression as a diagnosis. (Being the cop-outiest answer they could possibly imagine) After that I slept a lot and would often have spells of anti-social behavior and, I suppose, depression. I was put on Anti-depressants and Ritalin and sent to a therapist. I did get better grades in school and stopped feeling those pesky emotions which so troubled my parents, but I still had these 'spells.' Only now, after years of being told I was crazy or making things up, I mostly kept it to myself. I stopped having friends or playing outside and mostly stayed in my room for the next several years.
Now I am twenty-five and fed-the-hell-up! I am also now old enough to have figured out how this illness effects me. So here is the point of the story...
I'm often forgetful to the point where I forget family members names and anything having to do with numbers are a jumble. Dates, time, phone numbers, my own age. None of them make sense. Half the time I don't even know what day of the week or month it is. I sleep a lot. Tired all day and yet insomnia at night. I can only sleep well with lights on or pressure on my head, cause it makes me sleepy.
I have headaches all the time, including ones so bad that, I kid you not, Morphine is the only thing that works on them.
I twitch. Hands, legs, muscles I didn't even know I had.
Occasionally my fingertips or lips go numb.
Ironically, it also hurts my eyes. Photophobia. Where it used to be only direct sunlight, now all light hurts. Going to the beach, a snowy day, headlights, driving to work is all hell for me. It is starting to really effect my performance at work as half our building is made of glass. I can hardly stand to step foot inside that half on a sunny day. And get positively wicked with the costumers when I'm having a 'bad day.'
Then there is this... I can feel a 'bad day' coming. It starts a few days prior with a total lack of motivation, exhaustion and the desire to be alone. Following this is an insatiable appetite for blowing money or doing dangerous/idiotic/violent things. My mind races. I have all these ideas, each one more brilliant than the last. After that runs it's course, I get very quiet, my mind is empty, I lay on the floor and stare at the ceiling etc... After that either one of three things happen, it has run it's course and goes away OR I get homicidally enraged for no reason (and oddly aroused), OR I get, um, weird? I feel the latter coming in my eyes. Every room I step in and every light that shines makes my eyes throb from way deep down. Then the light shines just right and WHAM! I feel really warm or cold. I sweat. Every noise is unbearably loud. I have to close my eyes cause it hurts to see. My pupils get really small and my irises really green. I can't speak, even if I know just what I wan't to say it comes out as stutters and uhhhhhh. My limbs feel so weak I can hardly hang on to anything. I twitch more. And I feel like I'm either going to pass out or throw up. This nearly always lasts for exactly forty minutes. Then I recover. Forty minutes or three days. THREE DAYS of that!
I have of course been to the doctor for this. Several of them. I've also been to the ER. It's always the same. They look either concerned or skeptical, and I'm too disoriented to figure out which. They say they think they might know what's wrong and run some blood tests. I think they are helping me but really they are checking my blood for drugs, STD's or pregnancy. (mostly drugs. If they would just ask I could tell them that I haven't the money to support a drug habit nor the social aptitude to get laid.) Then they tell me the test, which I think where checking for actual ailments, came up clean. They check my chart and say, "I see here you have depression and anxiety. It can manifest itself in many ways, even physically." and because I don't have insurance I best be on my way. Then, because I knew that would happen as it does every time, I get upset. No one has helped me. They hardly believe me. Just like when I was a kid. I cry or get really pissed and you know what? They screen me for hospitalization in the mental hospital! Every time! Then I am thrust upon the mental health services offered by the city for people like me who don't have the money to afford basic human rights, dignity, or medical care. The only helpful input I ever received was from a therapist with a brain aneurysm. I had one of my 40min episodes in her office one fall day and she said, "Have you ever been screened for seizures? Because the lighting in here is really bothering me and you just did a mental 360. You could be having some kind of seizure in your optic nerve."
I am so sick of this. Winter is coming and with my eyes the way they are I know it's going to be tough. This keeps getting worse and after years of running around, I am convinced that this is not some sort of mental disorder. There may be depression, anxiety, mood swings, and mania but these are symptoms NOT causes. I just want someone to believe me. To make a suggestion or have an idea. I can't afford to see a specialist or get treatment but to know that someone is listening would really help a lot.
Hi, i am suffering from 100% same symptoms for past 14 years. I am now 27, and this disease what ever it is, has robbed my life. I was very bright student, participated in sports, social activities. But now, even telling my name to some times confuses me. What is cause of this? I have read tons of online blogs. Thousands of people around the globe are suffering but not even single one has been cured. Doctors seems to relate these symptoms as psychiatric.But i feel every thing physical. I am depressed, but because of this disease. Not otherwise. Oh GOD have mercy. I am tired.
Check to see if you have a B12 vitamin deficiency. I am figuring out why my Mom has issues and found this for you....http://www.fitday.com/fitness-artic
Please find a lyme literate doctor and have them run tests for tick-borne disease.....not the same often-inefficient diagnostic tests that the ER runs and the CDC still stands by. Help may be just an antibiotic treatment away......
I have all the same problems except the headaches except the one I had last week that lasted a whole day and the twitching. I went to a heart specialist and they told me it was reoccuring fainting not sure exactly what words was used because I'm very forgetful. I think its more to my condition.
I am not getting the twitching but I do get the Headaches and the forgetfulness and the constant fatigue. I am on iron pills because I'm anemic, but that doesn't seem to have anything to do with my being forgetful or getting headaches. I still feel tired all the time and it's not like me to feel so tired so often as I have in the last week. I have even forgotten things like forgetting that I called my family, or friends, and even forgetting that I made plans to hang with my sister. I even forgot my cell phone at home and I NEVER leave my house without it, usually. I often forget what I'm doing and my words get all jumbled and I laugh it off as me having mush-mouth. However, it's been happening a lot more often lately. I find myself slurring my words and stuttering and messing up on simple words I know well. What's going on with me??