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Thread: Do you know anyone who recovered from a very long illness? page

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    Sabre's Avatar
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    Do you know anyone who recovered from a very long illness?

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    About 8 months ago I got very ill with a rare viral illness, causing inflammation of my brain. Luckily, my speech and coordination were unaffected. But unluckily, it damaged my vision (everything is "static", like on an old tv set) and initially it made me feel completely out of it: woozy and doped up, like I was constantly dizzy (without the coordination problems) or mildly drunk (without the pleasure).

    8 months later I've made big improvements. I became obsessed with health and fitness. I went on a primal diet, I take good supplements, I get a lot of exercise (I'm physically in good shape), but the "wooziness" persists.

    I only notice it significantly when I'm sitting still or trying to concentrate. Otherwise, I feel fine--I go out with friends, socialise just fine, feel good. Then I come home, sit in front of my computer to do some work, and..... it's so difficult to concentrate. Extraordinarily frustrating, the stress response is intense and it takes a lot of self-control to avoid drowning in it. I stay positive as much as possible, and mostly I'm okay, but every now and then I get pissed off or very low.

    My doctor told me the brain should keep adapting and improving over time. At about the 2 year point I should have made the majority of improvements. The illness might have been a form of "encephalisation", i.e. viral inflammation of the brain. It's not clear, this is a "retro" diagnosis. Originally doctors thought it was psychological (this infuriates me if I dwell on it too long), despite my protests, and nothing was done about it.

    Anyone have any stories about stuff like this? I'm pretty confident I'm gonna make it back to normal, or close to it. I have many things to be thankful for. Perfect speech, coordination is fine, memory is solid. But I have this low-level woozy haze that just hasn't faded away, and sometimes it's a battle staying positive.

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    I have been dealing with persistent dizziness for nearly 4 years. It comes in spurts with no explanation, lasts for weeks and then goes away. I have seen 10 doctors but no one can help. I fall into depression now and then and snap myself out by getting active. I wish I could offer something that helps, but I have nothing to offer but sympathy.

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    Quote Originally Posted by Sihana View Post
    You have done very well so far, and I am proud that you took some initiative on getting healthier after your viral illness.

    Did you take any tumbles during the whole time?
    Did you get checked out by an Ear, Nose, & Throat doctor? <-- first
    Did you get checked out by an Eye doctor? <-- Second
    Did you get checked out by a neurologist? <-- Third
    Does it happen after an energy expending event, then relaxing, or can it happen soon after waking up in the morning?
    Thank you, I appreciate it. I've seen every kind of doctor, except an eye doctor, because I'm fully sure it's not an eye problem but a brain problem. I've spent about $1,500 (€1,200) trying to get this diagnosed. Eventually, my GP and I agreed that it could have been a rare viral illness that caused inflammation of some parts of the brain. I've come a long way. I haven't taken any tumbles since, and I've avoided alcohol and caffeine for the whole 8 months. The symptoms are always there, but they seem to be more intense when I'm tired and much worse if I catch a cold.

    I credit the primal diet with helping me A LOT. The primal diet, exercise, and having a circle of awesome friends has helped immeasurably. I'm just hoping that as time goes on things will improve, and I'm doing everything to enable my body to heal.
    Last edited by Sabre; 07-01-2012 at 09:09 AM.

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    Quote Originally Posted by teach2183 View Post
    I have been dealing with persistent dizziness for nearly 4 years. It comes in spurts with no explanation, lasts for weeks and then goes away. I have seen 10 doctors but no one can help. I fall into depression now and then and snap myself out by getting active. I wish I could offer something that helps, but I have nothing to offer but sympathy.
    Thank you, I'm sorry to hear about the dizziness. That's good that you can snap out of it by getting active. In my experience, nothing beats sprinting for getting a blast of feel-good chemicals. The dizziness could still go away in time, nothing is set in stone. I wonder do you have Meniere's? I heard about it recently -- the president of the UFC has it (a combat-sport organisation...), and he's getting some operation to fix it, involving cutting some particular nerves in the ears.

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    Quote Originally Posted by Sabre View Post
    Thank you, I'm sorry to hear about the dizziness. That's good that you can snap out of it by getting active. In my experience, nothing beats sprinting for getting a blast of feel-good chemicals. The dizziness could still go away in time, nothing is set in stone. I wonder do you have Meniere's? I heard about it recently -- the president of the UFC has it (a combat-sport organisation...), and he's getting some operation to fix it, involving cutting some particular nerves in the ears.
    I saw a doctor that specialized in fixing Meniere's, but he never mentioned it. I had all sorts of hearing tests, brain scans, and the only thing ever noted was nystagmus that did eventually correct itself.

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    This doesn't really sound like your symptoms, but I post it on the off chance that it is at all helpful: Inner Ear 'Rock Slides' Lead To Vertigo : NPR

    I apparently had this about 20 years ago. It came on suddenly and I was so nauseated I thought I was coming down with the flu. I had the nystagmus too. I was told it was a virus and given a decreasing dose of steroids. It did get better in a few weeks, but "better" is just a matter of degree. It tired me out. I was fine driving a car, oddly, but walking was more problematic. It finally went away entirely after about 12-15 months. No one mentioned or tried the Epley maneuver on me; I think it was not well known then.

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    Many thanks for the replies.

    @ Jodis, "It finally went away entirely after about 12-15 months"

    I love hearing stuff like that, knowing that improvements really can work out many months --and even years-- down the line.

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    My brain issues aren't from a virus, but after 2 concussion during the past year, I ended up with some issues that were driving me nuts. It started with a compromised immune system, then depression and irritability and lethargy. All I wanted to do was sitt on my butt and be pissed off all day. I started putting on weight too, no matter how clean I ate (I was still working, very active job, so not that), and then, since I couldn't see good food making my weight change, it was really hard to resist the crap. I've probably done some damage to my thyroid. I had an MRI and I definitely do have some brain scarring, but there's nothing you can do about that.

    Fortunately, brains are pretty good about healing themselves or rerouting paths to detour around damaged sections. The standard estimate I keep hearing is about a year, but it's going to be a very individual thing. I know the mood problems have virtually diappeared but the weight is still an issue. I've noticed lately that my vision isn't anywhere near as good as it was even a few months ago. That can be a little creepy, but again, there's not much that can be done to fix that kind of damage.

    I've heard a lot of podcasts and the like that mention coconut oil to help heal you brain and make it function at a level that's more optimal, so I do that when I remember. Also, Primal is really great because it avoids chemicals that can bypass the blood brain barrier and cause even more harm.

    So... other than the coconut oil and eating like you already do, I have no real advice. Just hang in there. Brain stuff takes time.
    My sorely neglected blog - http://ThatWriterBroad.com

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    My psychologist is a survivor of Acute Inflammatory Demyelinating Polyneuropathy. He still has vision problems and slightly impaired use of one arm and leg, but he jogs, is a new father. He has definitely improved since I started seeing him, and that was at least 4 years after the actual illness. I think you can expect slow improvement for many years.
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    Cheers Rita. Best of luck with your recovery. May I ask about the MRI--did it visibly reveal scarring on your brain? I only had a CAT scan, which reported normal results.

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