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

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  • Do you know anyone who recovered from a very long illness?

    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.

  • #2
    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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    • #3
      Originally posted by Sihana
      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, 09:09 AM.

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      • #4
        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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        • #5
          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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          • #6
            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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            • #7
              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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              • #8
                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.
                Durp.

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                • #9
                  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.
                  __________________________
                  age 56, type 2 diabetes, swimmer
                  low carb since 2006 thanks to Jenny, primal since Jan. 2012

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                  • #10
                    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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                    • #11
                      Originally posted by Pamsc View Post
                      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.
                      I'm glad to hear he has improved, it's reassuring. I googled that illness, it sounds pretty rough.

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                      • #12
                        The MRI showed some scarring over my right eye, which is where I tend to hit my head.

                        I had to get a copy of the images myself because the guy from the doctor's office called and said there was some, but when I asked where, he told me "They didn't say."

                        Funny, the actual report did.
                        Durp.

                        Comment


                        • #13
                          Originally posted by Sabre View Post
                          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.

                          If you had swelling/pressure in the brain that caused eye damage the doctor that you SHOULD seek out is a Neuro-Opthamologist. And eye doctor who deals specifically with problems that occur where the eye and brain intersect in the optic nerves. I suspect greatly that this is where your damage lies.

                          I have a brain pressure problem and I have to see one regularly to assess and determine the status of damage that has occurred and may be continuing to occur to my optic nerves.
                          Your situation sound different, as it was an acute illness rather than chronic, but sufficiently similar that I believe that seeing a Neuro-Opt would really be your best bet.

                          I personally have a chronic disease that causes high pressure in my entire head... leading to all of the speech, coordination (including walking like a drunken person and falling down), memory, sensory (extremely overly sensitive to auditory and visual stimulation), and thinking issues (confusion, fuzziness, disorientation)... and possible eye damage (though I only have a touch in one eye and it has been under control and is not currently progressing)... all at once.
                          I know from other people who have the same condition as me and experience some pretty significant reduction in vision that the damage CAN heal as long as the pressure is kept under control.

                          Since your case was presumably acute... you should heal.
                          Eating as well as possible... good clean organic/grass fed etc vegetables, fruits, meat, etc according to Primal sounds like the best route.
                          Adding coconut oil may indeed help as it has been shown to help greatly in some cases of reduced brain function (Alzheimers in particular), can't hurt to try it.
                          Eating heavily of a wide variety of vegetables has helped to gain remission for the degenerative disease Multiple Sclerois... Terry Wahls MD | Defeating Progressive Multiple Sclerosis without Drugs | MS Recovery | Food As Medicine

                          An amazingly healing diet... not sure it's a miracle cure for your problem or mine, but it has really helped a lot of people... is being put to a scientific study... and it can't hurt to at least reach in that direction.

                          Other than that you just need time.
                          Brain healing takes time... eye/optic nerve healing takes time.

                          Best of luck and HOPE that this resolves for you.
                          C.
                          Last edited by cori93437; 07-01-2012, 12:45 PM.
                          “You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.”
                          ~Friedrich Nietzsche
                          And that's why I'm here eating HFLC Primal/Paleo.

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                          • #14
                            Hey Cori, thank you very much for that post. I hope things get better for you too. A few weeks ago I asked my doctor specifically about seeing a neuro-opthalmologist (I know they deal with visual problems that stem from problems in the nervous system), and his words were something like "wellll.... you could...but then again... more than likely they're not going to be able to do or say much....except point out that there's some damage there..."

                            (he speaks in a kind of lazy drawl and mildly supercilious tone). So, maybe I'll try with a different doctor and get it booked.

                            I'll watch that video after I post this. Thank you for posting it.

                            Best,
                            S

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                            • #15
                              My dad had a significant stroke about 2 years ago. He has some pretty major deficits and they told him the majority of his recovery would occur in 6 months - 1 year and not much after that. We have found that he made the most dramatic recovery in his first year, but that he continues to make improvement even after that. I would say he is about 97% back to what his baseline was before the stroke.

                              The one area that still needs improvement is his balance. However, for some reason he has refused any therapy of help on that one. I really want him to take a balance class for seniors but he won't do it.

                              The things that seemed to help him were abstaining from alcohol for a long time after the stroke, getting plenty of rest, and staying active.
                              Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

                              http://www.krispin.com/lectin.html

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