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    Old 03-29-2005, 11:12 PM   #1
    TINUVIEL
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    How to cope with feeling "spacey"

    Just wondering what sort of neuro symptoms others have experienced apart from brain fog and cognitive confusion. Reason is, I am starting to feel really, really weird and spacey, and I can't tell if it's from being stuck inside and isolated because I can't get out of the house or whether it's something else. I don't know how to describe it exactly, sort of disconnected and unreal. And everything seems too bright and too loud. Like sensory overload.

    Headaches and backaches still there, sometimes the headaches are worse, and I nearly collapsed on Easter and had to go home early. Had to sleep so much after that I've hardly been out of bed since and feel like a complete zombie. No appetite, so I haven't been eating properly either.

    Does anyone have any suggestions as to how to cope with this until I can see a LLMD?

     
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    Old 03-30-2005, 12:29 AM   #2
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    Re: How to cope with feeling "spacey"

    Tinuviel, I know exactly what your going through. I feel spaced out almost every day of the week. It does feel like it has something to do with being isolated, alone, and in the house all the time...its kind of like a cabin fever/boredom type feeling isn't it? Its like there is no reality anymore and that your whole life feels like your inside a video game or something. Its a strange feeling but I began to realize after some time that it has a lot to do with how much you accomplish or do in a day too. If I sit around feeling sick all day and do nothing productive, its much much worse. If I get the nerve to get outta bed, get showered and dressed up, and just go somewhere... anywhere...like the bookstore....and do SOMETHING, the feeling does seem to go away. In the end, its the fact that we all used to be so productive with our lives and now that we aren't, our minds go crazy looking for stimulation...it needs SOMETHING...anything to take the mind off your symptoms...see what I'm getting at? You gotta find whatever that SOMETHING is for you and do IT often.

    Last edited by CFD 333; 03-30-2005 at 12:30 AM.

     
    Old 03-30-2005, 03:46 AM   #3
    ciconner
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    Re: How to cope with feeling "spacey"

    Tinuviel,

    Sorry you are so sick. I hope you get the rest you need and by some miracle start feeling better. It feels aweful when you can't do anything. You start to feel like you are missing out on so much. I know when I was stuck in bed for two days when we were visiting my inlaws in WV, I feel like I missed a lot of fun, but I just did not want to get out of bed. I tried. I had the headache and just felt so tired and sick.

    Everyone was laughing and talking and when I finally got out of bed it wasn't soon after that everyone went to bed. That was when I was herxing, but didn't really understand it. Lasted 2 days. Stopped taking the meds, too. Bad me.

     
    Old 03-30-2005, 06:03 AM   #4
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    Re: How to cope with feeling "spacey"

    I feel like I am in a constant brain fog. Nothing seems clear. I feel like I am floating above myself and watching everything happening and not having any control. My memory stinks and I transpose numbers and words alot. Light and sound bother me too! Headaches and blurry vision happens alot.
    Ask that same friend who comes over, just to take you for a drive or something. I am so with you on all of this!

     
    Old 03-30-2005, 11:37 AM   #5
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    Re: How to cope with feeling "spacey"

    Tinuviel - I think I know what you are talking about. This feeling was constant practically when I was sick then as I started treatment I would have moments where it would go away. Now it is rare but every now and then it comes back and at unexpected moments but I try to remind myself it will stop soon and is not permanent and it seems to leave.

    I had/have Babesia and I think this was causing it more than any of the other stuff I have because after my first month treatment with Mepron and Zithromax that disconnectedness was much less frequent and not half as severe.

    I describe it as feeling like the world is going on with out you. You can be sitting in a room full of people or even talking to someone one on one and then all of the sudden you fade out and poof it is like you are not there anymore....I don't know I can't explain it well either other than it is completely diconcerting and there is no control over it.

    I know what you mean about not knowing when it is going to come on and that is scary too. I will tell you that there were weeks when I was sick that I wouldn't drive - once I got proper abx treatment there is rarely a day I don't feel comfortable driving...It will get better! I just don't want you worrying that this is what it will be like forever.

    Take care

     
    Old 03-30-2005, 05:46 PM   #6
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    Re: How to cope with feeling "spacey"

    Tinuviel, I agree with you, it is definitely a mixture of a physical abnormality as well as psychological one...no doubt about that. There were times in my life, especially as a child, where I would spend all summer doing nothing and didn't hardly seem to care either way...in fact, I felt pretty good no matter what I was doing and enjoyed the piece and quiet. Now, it seems, our nervous systems are not behaving in a normal manner and are much more sensitive than before.

    The constant fog and disassociated feelings are certainly very real and we are not imagining them. While it does help me to get out and try to keep active as possible, it is not always a practical option...I agee with you there as well. I too feel that its not a matter of lack of motivation but a lack of energy and well being that confines us to such an isolated state...the will is present but the body will not cooperate. I don't know how it is for you, but the feelings come and go a lot too...for a week or two I'm extremely spaced out everyday and then for then next couple of weeks I feel a little better, more energetic, and want to get out and do things more.

    I wish I could tell you that I have found a way to overcome that spaced out feeling permanently, but I haven't yet. I can share with you my method of dealing with it when I can't get out and do things...For about a half an hour a day I listen to a relaxation/meditation cd. It helps me to calm down my mind and focus on something more positive. It seems to help the disconnected feeling subside, if only for a little while, and my minds concentration abilities seem to strengthen as well. Meditation, after all, is really a state of extreme concentration. After a session, you should feel renewed and refreshed. At first I would get really sleepy and want to nap which is very common, but it takes a little discipline to not let that happen...with practice you will learn to feel more awake afterwards and clear of mind. I hope that helps you a little.

    If meditation isn't for you, I've read that many people like to use Gingko Biloba to help sharpen the mind up a little. I don't know if there are any long-term, large population, placebo controlled studies to prove its benefits but it might be worth a trial run. I've tried it before but it fell under my long list of supplements that I can't tolerate. If Ginkgo doesn't work for you, someone else on this post did mention using ADD medications which might help as long as you can tolerate them and your doctor feels comfortable prescribing them.

    Last edited by CFD 333; 03-30-2005 at 05:53 PM.

     
    Old 03-30-2005, 05:57 PM   #7
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    Re: How to cope with feeling "spacey"

    Hi,

    Thanks to everyone for posting.

    Meditation is indeed a very, very helpful thing. I have been a regular meditator for over 15 years and a practitioner of Raja yoga and it has preserved my sanity in many regards.

    ncgirl- That is SO encouraging what you had to say about the antibiotic treatment helping this. How long were you on the medications before you noticed a difference? I realize it's going to be different for everyone but I was just wondering.

     
    Old 03-30-2005, 09:38 PM   #8
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    Re: How to cope with feeling "spacey"

    I can understand what you are feeling. I have been suffering with the symptoms of late stage lyme disease for about 18 months. The brain fog and mental confusion comes and goes. I would often find myself staring off in to space and zoning out...sometimes for a few minutes,,,sometimes for hours. I felt like I was watching a movie of my life and someone had pushed the pause button. When it happens my mind goes blank, I can't focus and often, if interrupted, I can't even talk. It has even happened while driving and I found myself lost and 30 miles past my turnoff! It can be scary and frustrating. And, loved ones often don't understand. But, it will get better. I went through months of oral antibiotics that helped some with the mental fog but nothing helped as much as the 6 months of IV antibiotics. During the treatment I suffered greatly from brain fog, memory lapses, confusion, anxiety, depression, dyslexia, etc... but in month 5 things started to improve. Now I am on oral antibiotics again and some of my memories are returning, I don't get lost as often, and I don't find myself staring off in to space quite as often. My thoughts are still jumbled up and I still have some trouble with word-finding, but overall my mental capaibilities have improved.
    I have found that diet and vitamins and certain supplements have helped clear out the cobwebs in my brain. I take Coenzyme Q10, alpha lipoic acid, L-carnitine, B-vitamin, multivitamin.. and I eat lost of fish,fruits, and vegetables. I load up on salmon and blueberries and green tea. It may sound strange, but it really helps. It''s not only helping clear up my mind, but my energy level is up and fatigue and pain is less. Good luck to all of you.

     
    Old 03-30-2005, 10:18 PM   #9
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    Re: How to cope with feeling "spacey"

    I have to agree with NClymie. My nervous system is where the Lymes is the worst. I am highly sensitive to light and noise. I feel dizzy and spacey a lot. I also have moments of pure unexplained rage. What I have found is that by staying hydrated, and trying to eat good foods, in raw form if you can (this has been a huge lifestyle change for me) and taking supplements like NClymie said, it's very helpful. I also am trying to be more aware of my surroundings. Pesticides have a HUGE impact on me. My husband sprayed for bugs around my house last week, and I had a total melt down. Didn't know exactly what was wrong until I talked to my Chinese medicine friends. They gave me some detox and I feel 100% better.

     
    Old 03-30-2005, 11:35 PM   #10
    TINUVIEL
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    Re: How to cope with feeling "spacey"

    NCLymie & Amber29,

    Thanks, those are some fantastic and really helpful suggestions. And the news about the symptoms responding to treatment is always very encouraging.

    I know exactly what you mean by moments of "pure unexplained rage", I've had some of those, too.

    I do need to stay more hydrated than I have been. I have some herbs which are supposed to help my appetite. I am hoping they'll do what they're supposed to and that I'll be able to start eating again.

    I have been taking most of these supplements except the L-carnitine. I think I'm going to try that.

     
    Old 03-31-2005, 10:18 AM   #11
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    Re: How to cope with feeling "spacey"

    Thanks for the great topic, i'm too spacey to read it all sitting here but will print and read in bed.

    Threads like this are good for the hubby too!

    cj

     
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