The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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severe anxiety... reallyreallyreally need some help :(

Discussion in 'General Treatment' started by alice111, Mar 2, 2015.

  1. alice111

    alice111 Senior Member

    i am really reaching my wits end with this anxiety - my docs dont know what to do, and I have tried everything I can think of:

    -stopped all supplements (new ones, one at a time, very methodically)

    -eliminated new foods

    -trying no sulfur

    -tried increasing progesterone, tons of magnesium, kava kava, NAG, turmeric, high doses potassium thats all i can think of right now.. but i have been trying all different things in desperation

    -and of course relaxation exercises, etc

    I cant research much because i cant read, i spend all my time in bed, and its hard to even concentrate on a tv show my thoughts keep spinning a mile a minute. My hands are clenched, and jaw too, it gets to the point where i feel like i almost cant breathe.. resting is impossible

    - what could be causing this?

    - is this exitotoxicity?

    - does anyone have any suggestions?

    -is the only solution something like a daily anti-anxiety pharmaceutical?

    This is a new-ish symptom (had M.E for 6 years, never had anxiety like this ) started about 10months ago.

    i dont know what else to do...
    justy, Countrygirl and oceiv like this.
  2. Sushi

    Sushi Moderation Resource Albuquerque

    When you say your docs, what type of docs are treating you? Has your autonomic nervous system been evaluated?
    From what I have read here on the forum and from what I have experienced myself, there are more long-term solutions. The challenge would be to find a doctor who knows what to look for and how to treat this.

    I am really sorry that you are suffering like this. All I can offer myself is the knowledge that other patients have had this symptom and they and their docs have found ways to treat it that got to the cause.
    Sending you hugs.
    helen1 and oceiv like this.
  3. antares4141

    antares4141 Senior Member

    Truth or consequences, nm
    Funny I never really remember having anxiety issues before I started taking probiotics. Now that and the recent antibiotic use is always what I suspect as maybe being the part of the cause. I try to ignore it or take my mind off it when it happens. Not think about things that are stressful as much as possible. Did have a high heart rate low bp issue for a long time until I quit drinking the local water here which is high in minerals and switched to distilled. But that was all physical no real anxiety at all.
    helen1 and oceiv like this.
  4. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @alice111 My system is pretty easily pushed into anxiety, so I totally empathize. I looked at your recent thread re food, but couldn't determine what you're eating. Good suggestion re probiotics from antares. Turmeric is hi sulfur. Any gluten or gluten cross-reactive foods? My nervous system was unbearable before I quit gluten. Took me 2 more years to learn of gluten cross-reactive. (link below)

    Do you have any notes you can consult to see what might have changed 10 months ago? Maybe something environmental, like mold? New or heightened EMF exposure? Some sort of chemical?

    B12 deficiency can also lead to anxiety/neurological symptoms. And mast cell problems. I'm linking a vid about each of those. I've found that these days when my mental state is way overactive, it seems to be mast cell, and I use the product developed by Dr. Theoharides, whose vid re Autism as brain allergy I'm linking. Also, there might be something useful in the Cooling Inflammation blog, but I've not spent much time there, and can't recommend anything. I agree w/ Sushi, it might take some time, but there's a good chance you can uncover the problem and treat the cause.:hug:

    Diagnosing and Treating Vitamin B12 Deficiency‬
    Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
  5. Martial

    Martial Senior Member

    Ventura, CA
    I know there may be an organic cause and in this case I would suggest potentially look into pyroluria, however I had severe anxiety issues for six years before ever developing any physical health issues. I was able to fully recover from my anxiety using a book called "At Last a Life" by Paul David. In your case there might be strong suspect of a physical trigger but it will still help regardless of the cause of the anxiety.

    To lay down some more info I used to have hours on end panic attacks, severe depersonalization, anxiety that would never leave, etc.. was on extremely high dose neurontin to control it, along with celexa and none of that did anything. Once I implemented the right knowledge I gained from the book I was able to wean off all the drugs and finally end the fear, fear of fear cycle. It was a bit challenging dealing with the withdrawals from meds though I was medically supervised. It is also a very up and down process to get over but definitely is possible!

    edit* sorry I saw you mentioning you could not read right now. You can maybe try Panic Away which also helps for generalized anxiety disorder as well. A website with audio guidance and visual guides to help overcome anxiety.

    I wish I could just post a lot of the info here but it would be kind of hard to really dig in the important parts all in one post. One thing I will say and is absolutely most important, the single main principle. Radically Unconditional Acceptance of the anxiety, not trying to control any of it or make it go away.

    It will just end up sticking and becoming more powerful that way. The other thing is just being extremely intimate with the feelings and sensations and feeling it as fully as possible.

    Just let the thoughts race, mind ramble, just completely allowing and accepting all of it as part of the present experience and simply "what is". It won't obviously go away instantly its a very up and down process in that way and you get good and bad days with the anxiety.

    Eventually though with the right attitude of not minding any of it, no avoidance or pushing away, and 100 percent acceptance the system can realign and become more calm again on its own.

    Of course you also want to find out what physical causes are triggering the anxiety in the first
    place and take care of it. This all just helps to have the right relationship with the feelings and sensations whether they are there or not, regardless of the cause.
    Last edited: Mar 3, 2015
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  6. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    @Hip might possibly provide some insight as well.
    justy, Hip and oceiv like this.
  7. Lillybelle

    Lillybelle Senior Member

    @alice111 sorry you are feeling so bad.Use. B12 b12 b12 Merhylcobalamine NOT cynacobalamine.

    Ask yr GP or ME doc for Baclofen which is NOT an addictive anti anxiety drug but is a relaxant.It works on GABA B receptors and dopamine. Relieves gut probs muscle pain and slows you down. You only need a very small amount to start. It's been used for over 50 yrs safely for muscle spasticity and has been used recently for both ME and alcohol withdrawal very safely.

    Also Slippery Elm herb is great for the gut its a prebiotic not a probiotic but reduces acidity and stomach upset nausea.

    Meditation if you can is the best antidote for anxiety and its under your control. Try The Honest Guys Free guided meditations on YouTube. I listen every day. Helps increase theta brainwaves and stimulates parasympathetic nervous system which is the relaxation response. You just need headphones and a smartphone. Google The Honest Guys. Goodluck
    alice111 and oceiv like this.
  8. CantThink

    CantThink Senior Member

    England, UK
    I seem to get bouts of crippling anxiety. In my case I think it wholly or partially has to do with hormones, as it seems prominent when I'm menstruating. I need to pay closer attention to see if it is occurring only then.

    Temporary relief - takes the edge off it for me - seems to be had from taking L-Theanine. This makes sense as studies have proved it has a positive effect, akin to meditation, on the brain (waves). However, unfortunately that does not seem to last the whole 24 hours. I shall try meditating again as well.

    I don't know if you are well enough to do activities, but a friend of mine has GAD, and she found knitting to be a meditative and temporarily calmative activity. I get the same effect from colouring or drawing/painting.
    justy and oceiv like this.
  9. PeterPositive

    PeterPositive Senior Member

    Some supplements that have helped me with anxiety are:
    • Ashwagandha, great calming/balancing effect (2x 300mg)
    • GABA, good anxiolytic effect (2x 250mg)
    • Valerian, calming, and good for sleep (2-3x 250mg)
    • Passion flower (500-1000mg)
    • Niacinamide (vit B3) 100mg. People with no methylation issues can use higher doses
    • B complex
    • High dose vitamin C ( > 2g / day)
    • Zinc (30-45mg)
    • Tryptophan (500-1000mg / day)
    You don't necessarily need to use them all together, I take the nutritional supplements every day + Ashwaghanda which also helps my weak immune function.

    I take the herbs and the GABA when I feel too anxious or can't sleep etc... If took all of those together they would put me to sleep for 48 hours straight :)
    Mary likes this.
  10. Mary

    Mary Forum Support Assistant

    Southern California
    @alice111 - You've gotten some really good suggestions above. A few more - have you had your cortisol levels checked? If they're chronically high, this can cause anxiety, and vice versa. The adrenal stress index saliva test is I think the best way to check this. If your levels are high, Seriphos (phosphorylated serine) (non-prescription) is excellent for normalizing high cortisol and is best taken in the morning on an empty stomach. Taken at night it can cause insomnia.

    I recommend niacin, because it stimulates the GABA receptors, and niacin together with l-theanine or GABA can be very calming. The niacin does make me flush but I've gotten used to it. I don't get the same calming reaction from niacinamide or non-flush niacin.

    Also I found a tea recently called Tension Tamer by celestial seasonings and it is calming without being sedating.

    If it's hormonal, B6 (P-5-P form) may help - this is supposed to help prevent PMS and morning sickness so obviously does something hormonally.

    Also - it sounds like you are holding your breath - if your jaw is clenched, you're not breathing properly. Google for information on deep breathing which is extremely important when you are stressed. Yes, you will have to force yourself to do it, you're not doing it naturally but proper breathing is critical.

    And as others have said, meditation is one of the best things you can do for anxiety. There's a very simple form which just has you concentrate on your breathing. It's not hard to do - the only hard thing is making yourself do it, and letting go of the results. Many people seem to try meditation and don't feel any differently after doing it, so they say it's not working. That's like going for one bike ride or doing one exercise session and complaining that you haven't lost weight or gained muscle tone. It takes daily patient repetition to get any results.
    Last edited: Mar 3, 2015
    oceiv and CantThink like this.
  11. Kenshin

    Kenshin Senior Member

    Baclofen sounds interesting, is it prescription only?
    Would it be prescribed for anxiety?
    Have you heard of phenibut? Its supposed to be similar and is non prescription (available online as a suplement)
    oceiv likes this.
  12. alice111

    alice111 Senior Member

    Thank you sooooooooo much for all your thoughtful replies!!! I really appreciate it.
    I will slowly get back to each as I can't type too much at once.
    I will also try to give more background as perhaps this may be helpful.
    In the meantime @Mary i recently posted all my new hormone testing -saliva and urine if you want to check it out?
    Again THANKS!!
    Will reply asap
    oceiv likes this.
  13. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @alice111 Martial mentioned pyroluria. Worthwhile taking this online questionnaire to see if that's a possible underlying condition. I self-diagnosed using this questionnaire, added the correct supps, and found a huge relief. I don't remember if you have Lyme, that's why I've linked the extra references. Online questionnaire to suspect pyroluria

    Klinghardt: Autism, Lyme, Pyroluria

    Short Version (36pg) Pyroluria/Lyme protocol. From Powerpoint doc used during Klinghardt presentation: Lyme Induced Autism
  14. Hip

    Hip Senior Member

    I wouldn't have thought that pyroluria could be behind such severe anxiety as @alice111 is experiencing. Although it's easy enough to treat pyroluria: you simply take vitamin B6 and zinc. So this is something easily tried.

    I've been there with chronic severe anxiety, and it is horrendous. It pushes your mind beyond all limits. On really bad days I would often be down on the floor in a fetal position, just praying for some kind of divine intervention to rescue me from that anxiety hell.

    @alice111 since you said elsewhere that Epsom salts (magnetism sulfate) baths brought some relief from your anxiety, perhaps consider trying this recipe for spraying concentrated magnetism sulfate solution onto your skin, from head to toe. This may be more effective that baths, because you get a much higher concentration of magnetism sulfate on your skin than you do with a bath, and with a spray it stays for a longer time on the skin, so you should absorb much more. When my anxiety was severe, I used to spray myself head to toe with concentrated magnetism sulfate solution twice a day. And it did make a difference.

    You say that you unfortunately had no success with N-acetyl-glucosamine and turmeric; but have you tried some of the other supplements that I found effective against generalized anxiety disorder on this thread:

    Completely eliminated my severe anxiety symptoms with three supplements!

    I found arginine pyroglutamate 5 grams (1 heaped teaspoon) for example works very well. You can buy arginine pyroglutamate as a bulk powder here. As well as taking arginine pyroglutamate orally, I found that taking a tiny amount (100 mg) intranasally (by snorting it into the nose) was also very effective.

    Arginine is also antiviral for coxsackievirus B3, and inhibits Epstein-Barr virus reactivation.

    Have you tried low doses of DHEA (say 10 mg daily)? I noticed in your hormone test results that your DHEA is low (you have a value of 10 μg/24hr, when the normal range is 100 - 2000 μg/24hr). You may want to consider 7-keto-DHEA, as this is not directly converted to testosterone or estrogen as normal DHEA is, so it will not affect you sex hormones as much as DHEA does.

    I was also looking at the estrogen levels in your test results, but the normal values for these depend on where you are in the mental cycle. Do you remember when in you cycle you took this hormone test?

    You may want to consider trying some anti-anxiety drugs. There are actually a wide set of drugs that are known to have anti-anxiety effects, although SSRIs and benzodiazepines are I believe are the ones usually prescribed.

    The following classes of drugs have an anti-anxiety action:

    Benzodiazepines ("benzos")
    Selective serotonin-reuptake inhibitors (SSRI)
    Serotonin-norepinephrine reuptake inhibitors (SNRI)
    Norepinephrine-dopamine reuptake inhibitors (NDRI)
    Tricyclic antidepressants (TCA)
    Beta blockers

    Some specific drug examples from the above drug classes having anti-anxiety effects:

    Klonopin (clonazepam) — benzodiazepine drug; can have protracted withdrawal symptoms
    Xanax (alprazolam) — benzodiazepine drug; can have protracted withdrawal symptoms
    Elavil (amitriptyline) — TCA drug
    Stablon (tianeptine) — TCA drug, but also acts as a selective serotonin reuptake enhancer (SSRE).
    Effexor (venlafaxine) — SNRI drug
    Lexapro (escitalopram‎) — SSRI drug
    Wellbutrin (bupropion) — NDRI drug (but Wellbutrin's dopamine reuptake inhibition is very weak, so it is more of a NRI).
    Lyrica (pregabalin) — anticonvulsant drug; can have protracted withdrawal symptoms
    Lamictal (lamotrigine) — anticonvulsant drug; can have protracted withdrawal symptoms
    Gabapentin (Neurontin) — anticonvulsant drug (and a GABA analogue); can have protracted withdrawal symptoms
    Inderal (propranolol) – beta blocker drug

    Some other anti-anxiety drugs:

    Buspar (buspirone) — azapirone drug
    Valdoxan (agomelatine) — melatonergic drug

    In terms of withdrawal symptoms, this survey of ME/CFS patients taking the benzodiazepine Klonopin (clonezepam) found that 36% experienced no withdrawal symptoms at all; 32% experienced minor or moderate withdrawal symptoms; and 32% experienced severe or very severe withdrawal symptoms. I believe this was after many years on Klonopin; for short term use, the risk of withdrawal side effects might be less.

    When I was suffering from constant severe anxiety, which lasted many years, I was very scared of the possibility of withdrawal side effects from drugs like Klonopin, so perhaps rather foolishly, I avoided benzodiazepines. I unfortunately couldn't take SSRIs either, because when I tried SSRIs they produced serious side effects in me (dramatically increased suicidal ideation).

    So this is why I went down the route of searching for supplements that had good anti-anxiety effects. Eventually I was able to put my severe generalized anxiety disorder into remission using the supplements I found. But I suffered many years with this severe anxiety before I found, by trial and error, the supplements that worked for me.
    Last edited: Mar 3, 2015
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  15. Kenshin

    Kenshin Senior Member

    Good info Hip I always research these things and Ive read about many negative side effects and bad withdrawals with ssri's.
    I see amitriptyline is a tca (tricyclic antidepressant), do you know if they are safer than ssri's or how they differ?

    Although they have the potential for addiction, it seems opiates are relatively safe in comparison to many of the common anti depressants, yet they are rarely prescribed.
  16. Hip

    Hip Senior Member

    I don't know how the side effect profiles of SSRI and TCA drugs compare in nay detail, but it is always useful when there are several classes of drug available for a given purpose, because if one drug class does not work for you, or has intolerable side effects, you can then try another class.

    I have not heard of opiates being used to treat anxiety. I imagine that tolerance/addition issues would be a major problem if you were to treat anxiety with opiates. There must be good reasons why they are not used as anxiolytics.

    If you are looking for alternative drugs to treat anxiety, some of the Russian nootropics (cognition enhancing drugs) have anti-anxiety effects:

    Here are some of the Russian nootropics having anxiolytic properties:

    Selank — Russian nootropic drug with anti-anxiety properties. Also has some stimulatory effects, and has hypnosedative and muscle relaxant properties.

    Semax — Russian nootropic drug with anti-anxiety properties. Helps repair the brain after stroke. Increases verbal fluency. Unfortunately it is a bit expensive.

    Tenoten — Russian nootropic drug with anti-anxiety properties. Reduces anxiety, fear, irritability & emotional liability. Mechanism: antibodies against S-100 protein at ultra-low doses exert GABA-mimetic and neurotrophic actions, up-regulate stress-limiting systems, contribute to the restoration of neuroplasticity.

    Mebicar (Adaptol) — Russian drug with anti-anxiety properties. Helps ADHD. Mebicar has an effect on the structure of limbic-reticular activity, particularly on hypothalamus emotional zone, as well as on all 4 basic neuromediator systems – γ aminobutyric acid (GASS), choline, serotonin and adrenergic activity. Mebicar decreases the brain noradrenaline level, exerts no effect on the dopaminergic systems, increases the brain serotonin level, and does not elicit cholinolytic action.

    Bromantan (Ladasten) — Russian drug. Novel in that it is both a stimulant, and has anti-anxiety properties at the same time. Works by inhibiting the reuptake of both dopamine and serotonin in the brain. Eliminates daytime sleepiness, increased activity, improves concentration and both physical & mental performance.

    Menthyl valerate (Validol) — Russian drug with anti-anxiety properties. Vasodilator, lowering blood pressure. Stimulates endorphins. Sublingual tablets work in under 5 minutes. Take 1 Validol tablet 2 to 3 times daily. Non habit forming. In prolonged use may cause light nausea, dizziness, and tearing of the eyes which fade away with discontinuation. Possible manifestation of hypersensitivity.

    Some other nootropics that have anti-anxiety effects:

    Aniracetam — can reduce reduce anxiety, fear, depression (antidepressant).

    Fasoracetam (aka: NS-105 and LAM-105) — antidepressant, anti-anxiety, and ADHD research.

    Sunifiram — reduces anxiety and improves memory and mood. Activates AMPA receptors. Sunifiram should be taken in dosed of 5-15 mg, and should be either cycled, or used only on occasion.
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  17. 0kaygrl


    Wow lots of awesome info here. Where can one get these Russian drugs? Just wanted to add my two cents: have you tried a low histamine diet? When my histamines are high I get anxiety. Along these lines something like benadryl or hydroxyzine might take the edge off. Holy basil can be of help here too. Also, reducing sugar intake helps.
  18. Hip

    Hip Senior Member

    Those Russian nootropics are available here:

    I have not myself tried a low histamine diet, but did try the antihistamines cetirizine or loratadine, and found these had some mild anxiolytic effects.

    The most successful anti-anxiety supplements I found are listed on this thread:

    Completely eliminated my severe anxiety symptoms with three supplements!
    Sancar and zzz like this.
  19. Kenshin

    Kenshin Senior Member

    @Hip I will look into those Russian nootropics, I mentioned Baclofen and Phenibut earlier in the thread which I think are in the same class.
    Opiates were very common but are rarely prescribed now due to the addictive potential, in regards to psychological side effects though the ssri's and benzo's are often described as worse.
  20. Bob


    England (south coast)
    @alice111, sorry you're going through such a hard time. If you haven't already, get checked for over-active thyroid. I suffer from physical and mental overstimulation (not anxiety as such, but anxiety can be a feature) and I use lemon balm to successfully normalise my system. Lemon balm blocks thyroid activity. It might be worth trying if nothing else is working.

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