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Neurotransmitter results....surprising to me

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by soxfan, Apr 26, 2013.

  1. soxfan

    soxfan Senior Member

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    So I just received the results of my urine neurotransmitter testing. The doctor had me test at 11pm because one of my main complaints is that when I get into bed I feel very wired and sometimes am awoken out of a sound sleep by the feeling of adrenaline surging through me.

    The results were nothing like I thought they would be and I am actually a little disappointed. The only abnormal results were
    Glycine 2,155.6 (441-1258)
    GABA 3.8 (3.9-7.9)
    Glutamate 38.6 (13.5-36.8)
    Dopamine 97.1 (106-191)

    Everything else was right in the middle of normal range. I am not sure what all this means. I did not receive the cortisol or melatonin results yet. I have an appt. with my new doctor next Wednesday so I am sure she can sort all this out.

    For a change my serotonin was really good as it had been extremely low the past couple tests.

    If anyone has any insights on this please feel free to write a post. I am even more baffled now as to why my sleep is so terrible....
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Well, GABA is calming, so if you don't have enough presumably you will be anxious.

    Glutamate is excitatory, so could cause agitation.

    Dopamine was thought to produce pleasure, but new findings suggests that it is more involved in motivation - see here for example:

    http://www.sciencedaily.com/releases/2013/01/130110094415.htm

    For what's worth, I seem to have significantly reduced my 'wired' feeling at bedtime by cutting out gluten and reducing my intake of sugar and grains. I am also taking supplements, these being l-glutamine, bone minerals and omega-3s, and also a supplement containing alpha lipoic acid and acetyl-l-carnitine, but I think my sleep had improved before I started this last one.

    I still take meds for sleep (over-the-counter ones and melatonin) but I don't need much. I rotate them to avoid developing tolerance.

    I get enough sleep most nights now. I have also improved the getting-to-sleep phase by looking at the vague shapes I can see when my eyes are closed, and avoiding thinking. Thinking is a real sleep-killer! I have previously found that reading, listening to the radio or watching kaleidoscopic videos helps to distract me from thinking and helps me get sleepy and doze off.
     
  3. soxfan

    soxfan Senior Member

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    Thanks for the tips. I sleep well with my combo of Kavinace and 1/2 Klonopin but wake up feeling very unrested. In fact I didn't even wake up till 7 this am which is late for me but I feel horrible. Kavinace is suppose to support GABA so I am already taking something for that.
    I don't think these results are really anything to be concerned about since looking at them again they are either slightly below or slightly above what they should be.
    Glycine seems to be the only one way off but I don't really think that means much.

    I feel so wired inside at bedtime I am beginning to thing it is an automatic response now since I have had it so long. At other times it wakes me from sleep so I just have no clue. Hopefully the doctor will....
     
  4. SickOfSickness

    SickOfSickness Senior Member

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    I looked at your other thread. This night wired feeling is only new this month? You can't think of anything you changed in the weeks before it started? It seems like at least a third of us have insomnia and wired feelings, and don't get tired until around sunrise, but I wonder about you getting this so suddenly.
     
  5. caledonia

    caledonia

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    Glutamate is high while GABA is low. Those kind of results are very common for those with ME/CFS. This is very significant and is the likely culprit for feeling wired. Glutamate is excitatory while GABA is calming.

    I suggest taking either GABA or theanine (GABA converts to theanine) throughout the day (say with breakfast, lunch, and supper) and keep up with the Kavinace at bedtime.

    I did this for a long time and it was helpful.

    Now that I'm doing methylation, I no longer need GABA, and my sleep is getting into a more normal cycle. Very exciting stuff.
     
    helen1 and Mattman1 like this.
  6. soxfan

    soxfan Senior Member

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    I get wired almost immediately when I get into bed. It starts feeling like my heart is pounding hard (not fast) and that I am rocking on the ocean in a boat...I know strange but true. This has been going on for about 3 years now. I did not have it early on in the illness. Back then I would get into bed and basically not be able to move from exhaustion. Now I don't feel exhausted but wired inside. It is to simply say horrible.

    I am seeing the new doctor on Wed and I am sure she will come up with some type of plan to help me...at least I sure hope so. I don't want to change anything I am doing until I see her and she has a chance to look at my results. I really don't like Theanine as it makes me extremely tired and strange feeling. I have tried it in a meltaway pill and didn't like how I felt.

    I am truly at my wits end with all this....I feel as though I have a completely different illness then what I started out with 9 years ago...anyone else feel like this. I mean I think I still have CFS (never been formally diagnosed) but the symptoms are totally different.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi soxfan,

    Urine neurotransmitter tests measure what you are excreting which may or may not correlate to the levels in your body. This makes it extra confusing!

    Sushi
     
    soxfan likes this.
  8. soxfan

    soxfan Senior Member

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    That makes sense Sushi...I was shocked by the results. I am just going to have to let the doctor know what I feel like at night and hopefully she will understand..
    I am wondering if these tests are really useful..or maybe just used as a guideline?
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I never could figure out what to do with mine as it was unclear what level of neurotransmitters were available in the body. We could be "dumping" high levels and actually be depleting ourselves, or we could have high levels and be excreting the "extra." I think we would need really good doctors to try to figure out what was going on.

    Sushi
     
    helen1 and soxfan like this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This is what I was like until recently. The wired feeling started about 5 minutes after I lay down, and lasted about 5 minutes. I had that for years, I think, but something I am doing now has almost got rid of it.

    I spent a lot of time trying to work out whether my apparent adrenaline rushes were due to anxiety or whether they had a physical cause and actually CAUSED the anxiety that tended to accompany them. The bedtime ones pretty-well clinched it, as they appeared at my most relaxed times. Now that I know they are not due to anxiety, and also that they don't last long with me, I have little or no anxiety with them and just try to ignore/endure them until they go away.
     
    soxfan likes this.
  11. soxfan

    soxfan Senior Member

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    I am hoping the new doc will be able to shed some light on this problem since it really is one of the worse for me. Not one doctor has been able to explain why this happens or even given me and advice on how to diminish the symptom.
    I have to say that mine will usually last until I fall asleep. Sometimes I will even wake up with it out of a sound sleep.

    I use to think it was anxiety but now I know better because I am not an anxious person and it does only happen when I am at rest. I have my fingers crossed that my appt. on Wednesday will give me some hope which I haven't had in a long...long time.
     
    maryb likes this.
  12. maryb

    maryb iherb code TAK122

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    Hope your new doc comes up with something.
    So glad to read MeSci and your opinions on this symptom as its also one of mine. It also wakes me up too, sometimes I get a funny whooshing sensation in my legs which I thought for years was an adrenaline rush but tests didn't show this to be the case.
    Despite being told its because we're anxious its clear its not. My doctors do NOT listen.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I would be very surprised if a doctor will understand this symptom or even be familiar with it. I also doubt whether you will be offered any treatment other than drugs or psychotherapy of some kind.

    I would suggest you try the diet-and-supplement route. We really are 'on our own' with this condition, but at least we can share ideas, thank goodness. It's through forums that I found out about the interventions I am using. I wish I had known about them a very long time ago.
     
  14. caledonia

    caledonia

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    It almost sounds like the theanine you were taking is too strong. Or it could be something with the fillers (instead of the actual ingredient) or the brand. Other brands or lesser amounts might be ok. That being said, I've heard of one other person who had problems with GABA/theanine, but she was getting an excitatory reaction (the opposite of what's supposed to happen).

    The other thing that has helped me a lot with sleep is magnesium. I take that throughout the day and also at bedtime. I did a sleep study and found out I was twitching my feet and legs all night long. This caused me to constantly wake myself up and have unrefreshing sleep.

    The thing you mention with the rocking boat reminds of that. I would fall asleep, kick my legs, hard enough to shake the bed, and half wake myself up. The sensation to myself was that the bed was rocking (because I didn't remember the kicking part).

    The other thing I have going on is I hold my breath during sleep and wake up with my heart pounding. This seems to be related to levels of B12, and the more B12 I get, the better this is getting.

    Anyway, have you done a sleep study? It might be able to shed a light on something.
     
  15. Dreambirdie

    Dreambirdie work in progress

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    As long we're on the topic of neurotransmitters.... I have been taking L-tryptophan for sleep for many years now. It used to knock me out so well (for the first 2-3 years), but lately it hasn't been working that great. In fact, for the past 2 years I have been sleeping mostly very shallowly, dreaming way too much (constant dream fragments), and waking up approx. every fifteen minutes throughout the night.

    MY question: Could the tryptophan possibly be CAUSING this?

    Any input would be appreciated. Thanks.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi soxfan,

    Do you ever check your HR and BP when you are in bed and experiencing this? I notice that on days where I have overexerted, the physical process of lying down when I go to bed gives me quite uncomfortable chest sensations. My HR seems normal (though, as you said, beating harder than normal). I haven't checked my BP but should.

    For me, as soon as sleep meds kick in (mainly ambien though also a tiny dose of clonazepam) this normalizes. My guess is that is is "postural" in some way as it only happens when I lie down and at times when I am extra tired.

    I have also started keeping a glass of electrolyte solution next to the bed and drinking every time I wake up at night.

    Sushi
     
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  17. soxfan

    soxfan Senior Member

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    Sushi- I have a pulse thing I can put on my finger when I wake up at night only because it seems like my heart is beating fast when it is really just a pounding sensation. My pulse is usually in the low 50's most of the night. I did wear a Holter monitor a year ago and it was perfectly normal except for one spike around 100. It definitely seems to be postural as the minute I get horizontal I start getting all those strange sensations. It can be like I am on a water bed moving up and down...sometimes I feel like I am actually drifting downwards...or just like I have all this energy surging through my body. I have not found anything yet that I can take during the day when I rest that can relieve this. It is worse on days I work or have been out doing errands.

    I have had a sleep study done back in 2010 but I only slept a little over 2.5 hours. They wrote that I did not have RLS or Sleep Apnea. I had great oxygen levels and hardly moved. I wish I could have slept the entire night because I really feel something is wrong with my levels of actual sleep time. I wake up so incredibly tired every morning and it is tough to start every day like that.

    I am supposed to be seeing a pretty good doctor so we shall see. I am not sure how much else I can improve my diet as it is already really good. In fact I have actually lost 10 pounds in the past couple months with my healthier eating. I would like to find some supplement that can calm my body down without making me feel ever weirder.

    I think I was taking 200mg of Theanine. My previous doctor had mentioned Taurine at one of my previous appts. I think that is in the Kavinace though. I do take magnesium (500mg) twice a day which doesn't seem to do anything.

    Thanks for all the suggestions...tips...and just listening and writing back. I will definitely let you all know what she comes up with because maybe it could help someone else too...
    I have to get back to filling out the questionnaire which is very hard since how in the world do you describe this stuff to people who have never experienced it!
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I forget if you are sensitive to meds Soxfan? Dr. Powen Hsu in Manchester, NH really helped me find the med that helps me get good sleep, it's an anit-depressant, but has been working for over 3 years now!

    GG

    87 McGregor St, Notre Dame Pailion, Suite 3200
    603-622-8665
     
  19. soxfan

    soxfan Senior Member

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    GG....yes I am extremely sensitive to medications. I actually feel as though I sleep well. I fall asleep pretty easily and sleep mostly through the night except for those adrenaline nights. I think I am getting good sleep but apparently I am not getting quality sleep as I wake up tired.
    What is the name of your med? I have tried just about every one on record including a few A/D's including remeron...amyltriptiline...trazadone...gabitril...I have a list a mile long.

    Thanks for the name though. I will keep it in case I might want to try those meds again.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    like every dam thing we take, i think we eventually get a tolerance for things, so good to take a break from it for awhile and then try it again and hopefully it will work again. tryptophan i have found good, when it works, 3 grams is what i have taken and generally wake up feeling better, mood etc probably from the extra seratonin.
     
    Dreambirdie likes this.

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