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Help W/diagnosis Petit Mal Seizures + Central Pain Disorder?

Hey. I think I am finally getting somewhere after 5 years of trying to get a diagnosis...I have just had my first pain clinic appointment and have recieved an opinion by one of the top docs in the area. I was born with spinal meningitis and at the age of 14, came down with a mysterious virus. I was severely ill for about a month- in and out of the hospital, couldn't walk, no appetite whatsoever, prolonged fever that peaked at 105, etc. I was put through the usual battery of tests for epstein barr, lupus, different types of cancers, all sorts of different things. I remember thinking: "my worst nightmare would be for this to continue into something chronic".

I never recovered from the virus. Flu-like symptoms were replaced by increasingly strange neurological ones. Here are some of the symptoms: feelings of 'waking up' in places (disorientation), muscle spasms, burning sensations, one-sided body weakness and numbness, blurry vision in one eye, extremely strange visual changes and disturbances- sometimes things are drab and out of focus, other times it's like i'm on some sort of psychedelic- things are beautiful...Neon, glowing, pulsating...I am able to distinguish between colors in cases where nobody else can, watering and swelling of the one eye (everything affects the left side of my body only), multiple-chemical-sensitivity, blinking of my focus-field when I am not blinking my eyes (this one is hard to describe....It's as if i'm blinking...Or the lights are turning on and off in a split second), staring spells, confusion, difficulty in finding the right words, feelings of moving large objects (when i' sitting or standing still), difficulty in moving my jaw after staring spells to form words, concentration problems, strange emotions in the absence of proper stimuli (sometimes I feel like somebody else is in my brain....And I do not have any psychiatric illnesses besides a mild ptsd stemming from trauma my illness has caused me), shooting pains in my arm and leg, edema, joint pain, stiffness, migraine, tension headaches, neuralgia, 'zinging' nerves (don't know how else to describe them), words constantly repeating in my head, limbs falling asleep, horrible sleep paralysis, waking up with headaches (left side of head), strange nightmares, vertigo, and swelling of the left eye, feeling worse after sleeping than after staying up all night. Often, I have a feeling of shaking deep within the left side of my brain (tremoring?) that runs up and down my arm and leg as well. Also, when I read, my vision blurs within 10 minutes (during a flare)....Sometimes I think this has to do with neck positioning although I am not sure why.


I can't think of anymore right now but there might be a few other things. I was misdiagnosed with fibromyalgia and atypical chronic migraines, and for a while was thought to have lupus. My mri is normal except for some lacunar infarcts- which my previous doctor had ignored. My new doctor says that the infarctions are not normal, and considering my symptoms, are characterisitc of a seizure disorder. She has diagnosed me with a central pain disorder which she believes is akin to post-polio disease...(post-meningitis in my case). She says that I do not have fibro whatsoever and that the old doc was an idiot for not paying closer attention to the specific neurological syptoms I have. She says that she thinks what is going on is a post-stroke disorder where I am having petit mal seizures (possibly during sleep as well as while I am awake). I was reading today about 'auras' (pertaining to seizures, not migraines) and some of it sounds very familiar.

Another thing I should probably add in here is that I am not sick constantly- I have flares that vary in severity. Sometimes it seems like certain neck movements trigger sypmtoms and can even start a flare- also certain neck movemenmts seem to coincide with shortness of breath? Stress and excercise can also trigger episodes. My flares last anywhere from a week to months. The initial onset of my problem lasted approx. 2.5 years without avail. I have tried every sort of alternative therapy out there and many different medications- many of which I have had rather severe allergic responses to. My last reaction was an extrapyramidal one to compazine (for headaches). It was terrifying.


I am scheduled for an eeg- my md is expecting to find petit mal seizures so she can start me on medication. If she is correct in her assumption, she says that many of the symptoms I have been experiencing for years will go away entirely or at least be lessened. I am a first time college student pursuing a double major in physics and philosophy and it is absolute hell dealing with this. I feel like my body is in constant battle with my will- well...I'm sure all of you are familiar with the feeling. She brought up a few medications I can remember- neurontin and gabapentin or something like that. I am currently taking oxycodone as needed for pain and am trying to come off of it as I feel it makes me rebound.....It works so well initially but the rebound negates the pain alleviation about half the time. I also take benadryl because I have found that it helps some of my symptoms, and medication for sleep as needed, which I try to refrain from taking because it gives me a horrible hangover.

I know this has been awfully long, and I appreciate any advice any of you could give me. If you would like to know what I have been tested for, I will most likely be able to answer any of your questions....Although you should probably assume I have been tested for most everything except perhaps the extremely obscure. I am hesitant (out of fear) but interested in hearing about the prognosis (long-term) of people with seizure disorders, as well. I'm 18 if it makes any difference, and have been having problems since age 13.


Thanks!!!


Jessica

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replied March 3rd, 2018
Thank you for asking at Ehealth forum!

I read your question and I understand your concern.
Your symptoms are consistent with central pain syndrome with associated focal seizures.
I would suggest you to continue gabapentin till its dose become optimal,do regular exercise and yoga.
Both are not fatal but central pain disorder can lead to chronic disabling pain.
I hope it helps. Stay in touch with your healthcare provider for further guidance as our answers are just for education and counselling purposes and cannot be an alternative to actual visit to a doctor.
Take care
Khan
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