Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Im convinced I have extremely high Glutamate levels, life is hell.

Discussion in 'General Treatment' started by jack blogs, Feb 23, 2017.

  1. jack blogs

    jack blogs

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    What can I do to try lower it? as a test?

    I always had issues throughout my life but nothing like this, I had fatigue and focus issues, 4 years ago I tried to treat 'hpa-axis dysfunction/adrenal fatigue' with MEDROL after receiving bad advice and it terrorized my mind (picture constant crying and charging back and forth), coming off of the drug my brain never calmed down.

    I am 4 years deep into this -
    I wake up, there is a CHAOS in my mind, a powerful energy/force - constantly overthinking, like my brain is overfiring too much and theres no brakes so it never ends, hopping from topic to topic, deep stressful and obsessive thinking patterns sometimes mixed with a spaceyness but doesnt really feel like adrenaline. Its very hard to explain, it really does not feel like a typical anxiety or stress feeling. I constantly pace up and down.

    I have tried things such as Alpha Blockers, in high dose. Didnt touch Anxiety whatsoever but it did stop orgasms which tells me the drugs did a good job of blocking adrenaline but adrenaline isnt whats causing my mental struggle.

    My diet is now filled with vegetables, meats and decent carb sources like basmati rice. no refined sugars.
    I had vitamins and minerals tested and I am deficient in them all
    I also have SIBO and Candida. I did Stool tests, Amino Acid and organic acid tests.
    I have really high Beta-alanine, Anserine and Carnosine levels.


    I Take all the B Vitamins, Folate, Zinc, Copper, Iron, Vit D, E, A, K and selenium to replace what im low in aswell as Bile Acids and Betaine HCl.

    Im not getting anywhere with this, I just dont know what to do.
    Could it be a GABA/Glutamate issue and what can I do ? i get the impression my brain is overstimulated to a rediculous degree.
    Ive tried memantine, L-theanine and Phenibut didnt do anything unfortunately.
    I tried Lamotrigine, but got a small rash before I reached 200mg so I had to quit it.

    I sometimes wonder if im in a state of overmethylation as people like to talk about but I dont understand it well. i take 500mg Niacinamide, will this have the same effects on calming down the methylation cycle as Niacin?
     

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  2. Hip

    Hip Senior Member

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  3. jack blogs

    jack blogs

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    (3) Has peaked my interest but im worried about taking anti-biotics as many say they mess up your gut and mine is already bad.

    EDIT: Im actually allergic to Penicillin anyway.


    Indeed, one study found that as activated microglia start pumping out glutamate into the brain, unexpectedly, glutamate transporter functioning is simultaneously down-regulated, which only further exacerbates the glutamate build up in the brain. 1


    This is interesting because Medrol (the drug that started this all) is obviously a corticosteroid:

    "corticosteroids induce an increased release of glutamate that induces neuronal toxicity due to accumulation effect."
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3853679/
     
  4. Hip

    Hip Senior Member

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    @jack blogs
    Do you also have anxiety (excessive mental tension and/or worry), or it is just the "wired" feeling? My theory is that generalized anxiety disorder can also be caused by excess glutamate. I found that the supplements detailed in section (1) were very effective for this anxiety. See this thread:

    Completely eliminated my severe anxiety symptoms with three supplements!


    EDIT: OK, so I just read that you say what you are experiencing is more like OCD than generalized anxiety disorder (GAD). Is that correct?
     
    Last edited: Feb 23, 2017
  5. jack blogs

    jack blogs

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    The mental tension and worry is at extremely high levels, I feel right on the edge of a nervous break down right now quite frankly.

    The baseline is very bad but it can get even worse, im feeling the worst of it right now at this moment.
    A lot of the time I wake up and the anxiety and stress feelings in my body are numb, yet my mind feels like its exploding, its bizzare and hard to explain accurately.
     
  6. keenly

    keenly

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    Try Dr Yaskos Becalm spray http://www.holisticheal.com/becalm-glutamate-gaba-spray.html
     
  7. Hip

    Hip Senior Member

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    I think I know the hell you are experiencing: I had severe levels of generalized anxiety disorder for around 5 years. Sometimes the level of mental tension would be so extreme, that all I could do was curl up in a ball on the floor, and just pray to God to take away that hell (not that I am particularly religious, but in those horrendous circumstances, you try to find help anywhere).

    Eventually the answer did come in the form of the anti-inflammatory supplements (especially N-acetyl-glucosamine) detailed in my thread. These supplement I believe work by reducing the brain inflammation that releases glutamate, which in turn I believe can cause incredibly intense anxiety.



    This might well be a major source of anxiety symptoms, as infection and inflammation in the gut can trigger inflammation in the brain via the vagus nerve (when the vagus nerve detects inflammation in the body, it signals this to the brain, and then the brain switches on or ramps up its own state of neuroinflammation).

    Lots of mental symptoms are being linked to brain inflammation, including depression, OCD, bipolar, etc.

    Thus if you are able to treat you SIBO, your anxiety symptoms may improve substantially. Some SIBO treatment options:
    Source: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment



    Myself, I had terrible IBS-D, and the inflammation in my gut was ramping up anxiety levels a lot. I found that probiotics and prebiotics improved gut health, likely reducing gut inflammation, which in turn substantially reduced by anxiety levels. I have thread on using probiotics and prebiotics to treat anxiety here.



    If you have any chronic inflammation in your nasal or sinus cavities, this can also ramp up inflammation in the brain, and again I believe thereby increase anxiety levels. In this case, it is the trigeminal nerve that detects the inflammation in nose and sinus cavities, and just like the vagus nerve, the trigeminal nerve then signals to the brain, and the brain then responds by ramping up brain inflammation levels. I found that treatments which reduce sinusitis and nasal or sinus inflammation would noticeably reduce anxiety.
     
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  8. Valentijn

    Valentijn The Diabolic Logic

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    NAC (N-acetyl-cysteine) should have an impact on glutamate levels and/or activity.
     
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  9. Hip

    Hip Senior Member

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    @jack blogs
    You may find this account of mild, moderate and severe anxiety of interest. There is a big difference between these levels.

    Once you get to severe anxiety, your perceptual field and cognition becomes very narrowed, and you are only just about able to focus on one thing at a time. All your thoughts throughout the day tend revolve around trying to find ways to relieve the anxiety (usually unsuccessfully), because the anxiety feeling is so severe. Career and social obligations often fall apart at this level. It's the classic nervous breakdown scenario.


    Have you tried SSRI drugs for anxiety? One of best SSRIs for anxiety is escitalopram (Lexapro). I tried one SSRI, but it dramatically worsened depression levels, so I could not use it, and was then afraid to try any others. The other common alternative anxiety treatment is benzodiazepines, but some people have a lot of trouble weening off these after taking them for several years.

    Other classes of drug that have anti-anxiety effects are listed in this post.
     
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  10. Mary

    Mary Senior Member

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    Southern California
  11. jack blogs

    jack blogs

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    What you explain is what ive been doing the whole day and its still happening right now. I would say that sometimes it gets a little easier and is more like 'Moderate anxiety' as it is explained in the book you linked.

    I describe what im going through right now to people in my family as 'torture' I often tell them im being tortured and i cant cope "my brain is torturing me!" after reading that exert, I guess what im experiencing right now would be classed as panic.

    I dont work and anxiety is too bad to be in public, I have no life.

    When im in the state that im in right now, I forget that its not always like this, i completely forget that it sometimes isnt as bad as this! (although still very bad)
    When I started this thread I was convinced that ive been stuck in this very state forever and always will be


    Ive tried valium but it didnt touch the psychological state but did make me feel dizzy.
    Ive also tried Moclobemide which did nothing. Ive never tried an SSRI, im also scared to.

    Ive had mulitple 'full blown' nervous breakdowns since my mind has been in this state where id be crying constantly and contacted emergency mental health services. I imagine im rediculously low on serotonin and that an SSRI wouldnt have much serotonin left to actually work with.
    Ive tried 5htp but it doesnt work for me, perhaps because my nutritional status is so poor (working on it)

    I appreciate your help by the way, that link about panic made me realise that im panicing and that im not always 100% this deep into this current state.

    So I guess id say my baseline is 'Moderate to severe anxiety' and it can fall into full blown PANIC.
     
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  12. jack blogs

    jack blogs

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    I also recently quit refined sugar and everytime i attempt to do this cold turkey i fail because i always fall into panic 100% guaranteed. Its as if my nervous system is extremely sensitive and even minor stressors put me into a melt down.
    It could even be the simple stress of committing to a supplement regime as I dropped the junk food i used for comfort and added in supplements all in one.
     
    Last edited: Feb 23, 2017
  13. Hip

    Hip Senior Member

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    People who have never experienced a severe mental symptom such as generalized anxiety disorder have no idea about how your own mind can throw you into a state of internal hellish torture. I also had a lot of trouble explaining to people how hellish generalized anxiety disorder can be.


    I don't think you have panic disorder (PD), as PD involves short periods of extreme anxiety called panic attacks, which usually last for 5 to 20 minutes, occasionally a bit longer (up to an hour). Those panic attacks also involve adrenaline, and often heart palpitations or a racing heart. But outside of those panic attacks, a person feels normal. Panic attacks will only occur a few times month, or with some people several times a week.

    Whereas with generalized anxiety disorder (GAD), which is what I had, and I suspect what you may have, anxiety is present all day long, although it can vary in intensity. Like you, I had moderate GAD on most days, but once or twice a week I'd have a day where the anxiety level would shoot up to severe.

    Nowadays, with N-acetyl-glucosamine and the other supplements detailed on my thread, I either have no anxiety at all, or at worst I might have the odd day with mild anxiety.

    I would suggest you consider trying N-acetyl-glucosamine, because if you read though my thread, lots of people who tried it said it worked very well for their anxiety, and works with an hour of taking it.



    One alternative to SSRI is high dose inositol powder, 2 heaped teaspoons (= 15 grams) of powder a day. This works on the serotonin system, and has both anti-anxiety and antidepressant effects. I get good results with inositol. Note however that its effects take about 12 hours to kick in, unlike N-acetyl-glucosamine, which starts working within an hour or so. Most of the 29 anti-anxiety supplements in my list start working within an hour or so.

    Have you tried arginine pyroglutamate? That is one of the more potent anti-anxiety supplements in my list of 29. When I had moderate to severe GAD, I'd have to take up to 10 of these anti-anxiety supplements together, to try to lower anxiety levels. Each supplement only reduces anxiety by say 10%, so that's why I found I had to take a whole regimen of these supplements at the same time. But arginine pyroglutamate is a bit more potent, and I would say reduces anxiety by 20%.

    N-acetyl-glucosamine I found to be the best, reducing anxiety by say 50%.


    If you do try an SSRI, I would suggest starting with a very low dose, just testing to see if any bad side effects occur. Then if they do occur, they will be only slight, because of the low dose. I often test new drugs in this cautious way.



    I wonder (very speculatively) if this relates to your SIBO: possibly the bacteria in your long intestine are dependent on sugar, so that when you stop consuming sugar, they start dying off quickly, so that you get a die-off reaction, with bacterial toxins like LPS being dumped into your system

    Treating your SIBO might be key, but you'd may want to do it slowly.
     
    Last edited: Feb 23, 2017
    jack blogs likes this.
  14. jack blogs

    jack blogs

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    You're right, it wont be PD by that description because I never experienced palpitations or anything like that. I was going to try Beta blockers but Im doubting theyd work this type of anxiety.

    Not tried the two supplements you suggested in bold but I will try them ASAP and go through your list.
    As for Inositol ive tried high doses of Jarrows Inositol in the past but had to stop pretty quickly as it gave me diarrhea.

    arginine pyroglutamate

    Thats interesting because I was just looking through an amino acid blood test i did and I was very low in arginine.


    Arginine * 19 umol/L (30-145)

    //






    I think treating my SIBO will be very important also, I have very high levels of toxins in a urine test I did. This following piece is taken from the test results.

    Beta-alanine (high) Beta-alanine, a nonessential intermediary amino acid, is abnormally elevated in this urine specimen. Normally beta-alanine is near completely deaminated to alpha-ketoglutarate (B-6 dependent). Beta-alanine is derived from: (1) the breakdown of DNA/RNA (yeast, pyrimidine, uracil), (2) activity of unusual bacteria on aspartic acid and, (3) the hydrolysis of anserine and carnosine, which are peptides found in beef, pork, poultry, salmon, and tuna. Elevated beta-alanine inhibits the breakdown of anserine and carnosine, and impairs the renal conservation of taurine and beta-aminoisobutyric acid; taurine is an important antioxidant, neurotransmitter and essential for the retention and homeostasis of intracellular magnesium and potassium. Beta-alanine is a neurotoxic substance that suppresses development in the brain and spinal cord. Beta-alanine also interferes with the metabolism of the neuroinhibitory neurotransmitter gamma-aminobutyric acid. Hyper-B- alaninurea has been associated with seizures and somnolence.Patients exhibiting elevated urinary B-alanine should be retested after given a trial on a low-protein, low-pyrimidine diet and high B-6 (P-5-P). Elevated levels of B-alanine are highly correlated with gastrointestinal and genitourinary infections in patients with Chronic Fatigue Syndrome. Intestinal dysbiosis, especially candidiasis, should be evaluated via a Comprehensive Stool Analysis

    I also found this,

    Additionally, Candida produces a toxin called beta alanine that competes with taurine for reabsorption in the kidney, and causes taurine to be wasted in the kidneys and excreted through the urine and beta alanine is absorbed instead. Therefore, taurine levels may be insufficient, which can contribute to less GABA activity. Not only that, taurine can combine with magnesium to form magnesium taurate and the two of them may be eliminated together, which can lead to magnesium deficiency. Insufficient levels of magnesium are going to result in excessive levels of calcium, which as we established earlier, will increase glutamate firing.

    Source: http://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

    My Beta-alanine levels are 3x over the top of the normal range.


    Any experience with anti-histamines for anxiety?
     
    Last edited: Feb 23, 2017
  15. joeblow604

    joeblow604

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    @jack blogs I know the hell and torture both you and @Hip describe. Its hard to put a name to it and don't think it quite fits anxiety.

    I went through 8 or so months of it 24/7 straight. Intense for about 18 hours a day. Only slept 2-3 hours per day. SSRI made it worse and benzo's did nothing. By the end of it was ready to die. So I fasted. The symptoms were gone by the second day. As soon as I ate they came back.

    I don't have a full answer but for me now its impossible to eat fruit, sugar and dairy. These will set that off very easy but can also come from grains and starches if I eat too much. Probably SIBO or something related.

    I have found shorts fasts and lemon wedges and water to help and can relieve the symptoms by the end of the day. (Lemon can make it a little worse at first, be warned) If fasting alone it can take several days. Also coconut and these fermented carrots I make help as well but I think its just because of the fibre and moving things out of the digestive system that don't ferment as much.

    You could be different and it could also be a combination of things or more than one condition causing all of it as I think it is for me. I'll have to read through some of Hips suggestions. But wanted to mention the lemon. Its been a real life saver for me at least to get some immediate relief and I know how bad it can be. Good luck...:)
     
  16. Hip

    Hip Senior Member

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    Unfortunately that is a side effect in some people. It's possible that OTC anti-diarrhea tablets like loperamide might counter the diarrhea produced by inositol; but perhaps if it is causing that side effects, best to find something else.



    Arginine pyroglutamate has the best blood-brain barrier penetration of the arginine supplements, and I think this works the best for anxiety, though I have noticed that other arginine supplements also reduce anxiety, when taken in doses of 1 heaped teaspoon of powder.



    I don't think beta alanine will worsen anxiety; some people take beta alanine as supplement, and a quick check on Google reveals reports that it lowers anxiety. I am not sure why they are calling beta alanine a neurotoxin.



    I found that OTC antihistamines like cetirizine had useful anti-anxiety effects, again somewhere in the 10% reduction range.

    I have not experimented much with the classic anti-anxiety antihistamines like hydroxyzine or diphenhydramine, because my anxiety is fully under control now, and so have mostly stopped testing anti-anxiety treatments.



    Have you tried anything for the SIBO? If so, did it reduce anxiety symptoms? I am speculating that it is possible that the corticosteroids you took, which are immune suppressive, could have allowed the bacteria in your long intestine to proliferate and get the upper hand, causing SIBO, and thereby leading to you anxiety symptoms.

    The SIBO website I linked to earlier also suggests herbal antibiotics like allicin and oregano oil. You can take high doses of allicin without ill effect.

    A gradual reduction in sugar (slowly over a period of several weeks) might possibly also help starve off the SIBO bacteria.
     
  17. Hip

    Hip Senior Member

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    Anxiety is usually defined as mental tension and/or worry. You can have either one or the other, or both, and if you do this qualifies for anxiety.

    Anxiety however is also a natural state of alert of the brain, a state of alert which normally kicks into action when you perceive danger and precarious situations. If you were walking down a street, and were suddenly pulled into a dark alleyway and had a gun pointed to your head, your anxiety levels would go through the roof, because of the imminent severe danger. Anxiety is the brain's mechanism of putting you on full alert, for survival reasons.

    That's what moderate to severe generalized anxiety disorder (GAD) feels like: GAD has all the intense mental tension and worry that having a gun suddenly pointed at your head would trigger. Except that in GAD, there is no gun, and there is no external reason for the anxiety. Rather, the anxiety is caused internally, most likely by a malfunction of the anxiety circuits of the brain. Due to this neurological malfunction, these anxiety circuits become permanently switched on and activated, so that you constantly feel in an anxious state of full alert, but without any external reason for this, nor any external dangers present.


    This neurological cause of anxiety within the brain is what confuses some people when you explain to them that you have generalized anxiety disorder: they say: "But what's causing you to be so anxious? There is nothing in your life at present causing stress, so why the anxiety?"

    What these people don't realize is that the symptoms of generalized anxiety disorder are not caused by external life events, but likely by an internal malfunction of the anxiety circuits of the brain.


    Though sometimes you can get a combination of the GAD malfunction of the brain, mixed in with external stressors. Take someone performing a job involving a lot of stressors: if that individual suddenly develops generalized anxiety disorder (from some health related reasons), then they may suddenly find they are no longer able to deal with those stressors (even though previously they had no difficulty with them, when their brain was working properly). That's when people are observed to have a "nervous breakdown", and may quit their job and career, and even their relationships, because they are no longer able to handle the job after getting GAD.

    Work colleagues may then think it was the stressors in the job that triggered the nervous breakdown; but in fact that individual was perfectly able to perform their job, until their brain went wrong and they developed generalized anxiety disorder.
     
  18. kangaSue

    kangaSue Senior Member

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    Check that it doesn't involve elevated d-lactate levels. Elevated levels are known in ME/CFS and sometimes a high fibre diet can add to elevated levels which can be a cause of or exacerbate anxiety issues.
    http://phoenixrising.me/archives/633
     
  19. JES

    JES Senior Member

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    SSRIs actually lower brain serotonin levels in long-term. The reason SSRIs work for some people with GAD/depression has probably little to do with serotonin, it's a debunked theory that serotonin would be lacking in depressed/anxious people. The positive effect from SSRIs in people who respond to them comes 2 or 3 weeks after you begin medicating, whereas the serotonin re-uptake effect should appear within days of starting. The big problem with SSRIs is that you brain/body tends to develop tolerance to them in long-term, so the same dosage no longer works.

    I have found very few supplements that work in long-term for GAD, Magnesium and LDN are the ones I currently use and get most benefit from. Probiotics may help some, but can be hit and miss depending on the strain. Carnosine, which breaks down to beta-alanine in the body, actually helped me some as well.
     
  20. Hip

    Hip Senior Member

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    Hasn't that theory been questioned and challenged, rather than actually debunked?

    There are numerous different types of depression, so conceivably low serotonin or serotonergic dysfunction may be involved in some types, but not others. Of course, other neurotransmitters such as dopamine are also involved in depression, and many antidepressants work by boosting the dopamine system.
     

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