still in this flare, cognitive dysfunction startin to scare me.

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, Jan 19, 2007.

  1. Trevor1

    Trevor1 New Member

    Hey everyone, im still in this declining flare i've been in, its been over a month and a half now. I have zero energy, constanlty feeling fluey, and my brain fog is getting more and more scary each day.

    My brain fog has always been my worst symptom since my onset a year and a half ago. Mine is a real "detatched" feeling, were I look in the mirror and it doesn't even feel like im looking at myself, don't know if anyone else's is that bad, but mine really scares me because I feel so disconnected from reality, I don't even feel alive.

    And thanks to this flare its gotten much worse, I feel so out of it constantly, the worst at night and in the morning. I haven't been able to sleep what so ever. And I can't seem to figure out why im just constantly declining in health.

    My fog is 24/7 and has been since onset, but its getting
    worse, is anyone elses this bad? especially during a flare, and can anyone recommend anything that helps with their fog? I know most of the supplements etc, but can't find any that help.

    I may try heading off to mexico with my mom again to see if I feel any better, I did when we went a couple of weeks ago. Mainly because at home im so stressed out because my friends are constantly asking me to come out and do stuff, im 19. And I have to keep saying no no no, and they think I just want to sit at home, when really I have no energy what so ever.

    So I think that really messes with me and makes my fog worse, I've been sick for almost two years and yet my friends still treat me like im just lazy, so does my dad.

    Anyway this is mostly a vent, just needed to talk for a bit, my CFS specialist coudln't do anything for me, he wants me to eat more but I have little appetite with feeling so sick, and feeling so out of it. So im pretty much on my own here, my mom helps out. Maybe If i can spend another week in Mexico and get away from my the stress of home life ill start to feel better.

    Thanks for listening to my vent, and I hope you all are feeling well, take care.

    Trevor
  2. karinaxx

    karinaxx New Member

    i did have sever spells of brain fog and feeling of nothing is real.(one night it got so bad and scary, i phoned a friend and cried,lasted for about an hour). my sons calls it:" feeling like in a dream". he is only 10 and has cfids too. i do think that a few of us do have severe trouble with the brain, all do, but some more.
    but since you seemed to be stresses at home, it might be a good idea to leave and stay with friends or where you dont feel this stress. stress willlll make it much worse.
    i do agree with nofor though, that maybe you should also see a Neurologist. are you taking any meds?
    possible adverse drug reaction?
    another thing, i react adverse to certain food, as many do here, and on top of the list is gluten and heated oels in the food.
    and you should test yourself for HHV-6 and Borellia B. these are the two viruses affecting the central nervous system (brain) the most.
    if it goes hand in hand with insomnia, i do resort to a valium to calm it down.
    but do make a appointment with neuro, you are so young, you should not be left alone dealing with this.
    take care and a big hug
    karina



  3. karinaxx

    karinaxx New Member

    i just saw another post from you , where you said you was treated by Goldberg.
    i just recently read a presantation from him about autism and cfs. i quotes HHV-6 as a common denominator.
    intresting that you got so much better with his brain meds. i find it also very responsible that you do not recommend or name it here, to many do and it could cause damage.

    by the way, read your profile, your not only an old soul, seem to be wise on top of it.

    take care karina

    his presantation you can find under my profile a few weeks back, if you are interested, but maybe you are familiar with it.

  4. karinaxx

    karinaxx New Member

    i just read some of your post and we have something in common. my aso was up on 8oo two years ago, several antibiotics , just got worse and since than mostly homebound. several allergic ABX reaction which left me much worse. after the last one the brain thing got so much worse!!!
    i researched this a bit, i will bumb the post again, many seem to not be aware that there is something going on in a subgroup of cfids patients and ABX.

    by karina

  5. teller7

    teller7 New Member

    Hi Trevor: Have you had alot of tests for different things to rule them out and come to the conclusion that it's CFS? Have you had an MRI, lumbar puncture, or anything like that? I really would go to a neurologist if you haven't been already. But, I can really relate to everything you say about how you feel. What medications are you on? I would really be interested to find out. It's just NOT fair that all this is happening to you at your age. It makes me sick to think of it for you. I'm 67 and over the hill so it's not so important to me. Have they checked your thyroid? Maybe you've answered all these questions before and I haven't caught up with them. I've thought about you alot since I first answered your post about crashes. I had 5 really good days (good for us CFSers). Was sitting at the computer on the 5th evening and all of a sudden broke out in a sweat, felt sick to my stomach, the fog rolled in and I was down for a week. Low temp, couldn't get warm. Same old thing. Did the doctor exhaust all other possibilities for you before he said CFS??????
    I'll keep checking for your answer.
    Teller7
  6. Catseye

    Catseye Member

    Have you tried to supplement with the nutrients responsible for these problems? I have been and they're working. See my post "neurotransmitter precursors" from Jan 18 about the cognitive disfunction.

    For the energy, look to the nutrients responsible for cell energy, ATP. I started on these and went from bedridden to walking around in 2 days. Search for the article, Heart Disease Secondary to Mitochondrial Malfunction. It doesn't matter if you're eating healthy and still have these problems. Some of us can't process adequate nutrients from the food we're eating, even if it's healthy.

    BTW, what is your diet like? Have you looked into food intolerance? Dairy and wheat screw me up royally, not indigestion but they way I think and feel. Search for food intolerance, too.

    good luck!

    karen

    not so foggy, anymore!

    here I copied the one post:

    Assuming the depression is an imbalance or lack of some neurotransmitters, you may want to try the simple nutrients that your body uses to make them. I haven't been depressed for awhile (since I've been feeling better) but now, when I read alot, my neuros get low and my brain fog increases. So I take these and it takes care of it. Below is a copy of my post to someone else with anxiety and depression. These things may sound "funky" but they are all chemicals either found in food or your body makes to use from other ones in food. So they are natural and since they aren't drugs, your doctor won't know about them. Have you tried 5htp? That's the only one not listed here:

    There are many other neurotransmitters that are important besides serotonin.
    Some other neurotransmitter "nutrients" like 5htp you can try are:

    phosphatidyl choline
    phosphatidyl serine - amino acid
    TMG (trimethylglycine) - amino acid
    phenylalanine - amino acid
    tyrosine - amino acid
    DMAE (is molecularly similar to choline) - amino acid
    B vitamins
    threonine (everybody spells this one differently)

    Here's some interesting stuff about "neuros":

    5-HTP---converts to--->Serotonin---converts to--->Melatonin

    Phenylalanine---converts to--->Tyrosine---converts to--->DOPA---converts to--->Dopamine
    ---converts to--->Norepinephrine---converts to--->Epinephrine (aka adrenaline)

    Note that norepinephrine is a key neurotransmitter AND an adrenal hormone.

    Here's some neuros, what they're for, sign of deficiencies, and the nutrients your body needs to make it:

    Serotonin: for Emotional Stability
    deficiency causes: Lack of rational emotion, feelings of irritability, sudden unexplained tears, sleep problems
    body needs: 5HTP or L-tryptophan, Calcium and Magnesium

    Dopamine: for Pleasure, reward, good feelings toward others, maternal/
    paternal love
    deficiency causes: Anhedonia - No pleasure, world looks colorless, inability to "love", no remorse about personal behavior
    body needs: L-phenylalanine, Vitamin B6

    Norepinephrine: for Arousal, energy, drive
    deficiency causes: Lack of ambition, lack of drive, depression
    body needs: L-phenylalanine
    Vitamin B6

    GABA: for Staying calm
    deficiency causes: Free floating anxiety, feelings that things are closing in around you, unexplained panic
    body needs: L-glutamine, Vitamin B6

    Enkephalins: for Psychological pain relief
    deficiency causes: Feelings of incompleteness, lack of fulfillment, feelings of inferiority, feelings of inadequacy, never feels "equal," fearful, insecure feelings
    body needs: D-phenylalanine, Vitamin B6, Folic Acid (a B vitamin)

    Tryptophan is the least common amino acid in food. It is also the most difficult to absorb into the brain. These make serotonin synthesis more difficult. Although tryptophan is mainly found in fish, meat, dairy products, eggs, nuts and wheat germ, eating these does not substantially increase serotonin. This is because these foods contain other amino acids that compete with tryptophan for absorption. Tryptophan “loses out” to the other amino acids.

    Eating carbohydrates raises serotonin levels but eating protein decreases serotonin levels. Carbohydrates cause an insulin response that favors tryptophan absorption over other amino acids. This explains why many people who need more serotonin (like being overly-stressed or depressed) start to “self-medicate” by eating more sweets or starchy carbohydrates. As tryptophan absorption rises, so will serotonin production.

    EFAs (essentail fatty acids) are also critical for brain function.

    The levels and function of several neurotransmitters can be increased by the supply of their dietary precursors. The neurotransmitters include serotonin, dopamine, noradrenaline, histamine, acetylcholine and glycine, which are formed from tryptophan, tyrosine, histidine, choline and threonine (amino acids).

    This is why alot of us are loading up on free form amino acids. Our broken bodies cannot product them in sufficient quantities.



    hope this helps,

    karen [This Message was Edited on 01/23/2007]