severe anxiety... reallyreallyreally need some help :(

[Wayne]

- does anyone have any suggestions?

Hi Alice,

I'm sorry to hear you're going through such intense anxiety. I experience the same, but I don't think as often as you describe.. FWIW, I recently read that taurine can reduce glutamate levels (which causes excitotoxicity).

I started taking 2-3 grams a day this past week, and have noticed a new relaxation settling into my body, and have been fairly astonished how well I've slept the past couple of nights (during a full moon no less). Taurine is relatively cheap. It might be worth a try--but would recommend starting slowly to get an initial take on how well your body responds. -- Good luck!

 

[0kaygrl]

I must say, use caution with the benzos, they may be beneficial for short term use but after a while they tend to exacerbate the problem causing more, and worse anxiety

 

[Hip]

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.

I imagine that the Victorians must have used laudanum (a tincture of opium) to reduce anxiety.

 

[Hip]

I started taking 2-3 grams a day this past week, and have noticed a new relaxation settling into my body, and have been fairly astonished how well I've slept the past couple of nights (during a full moon no less). Taurine is relatively cheap.

I often take around 3 or 4 grams of taurine powder on days when I feel my anxiety is starting to return (in spite of my standard NAG, turmeric and flaxseed oil anti-anxiety regimen). Taurine does have a pretty effective anti-anxiety effect.

However, I do notice that taurine's potency wanes a little after a few days, possibly because taurine acts on both the NMDA and GABA systems, and anything that acts on GABA tends to follow a law of diminishing returns, because the GABA system is prone to tolerance / addiction effects.

 

[taniaaust1]

I had severe anxiety issues etc which would come and go (far worst at some times then others).. mine turned out to be due to hyperinsulinemia which a smart specialist finally realised I had and got me tested for it. This also gave me severe premenstrual dysphoric disorder (severe mood changes with my period). That anxiety issue is now completely controlled by an extremely low carb diet (lower then diabetic diet)

I can also suffer from anxiety issues if I over do things and are crashing (to avoid that I try to avoid doing things which would cause crashing). POTS too can cause anxiety issues so I can get anxious if upright too long but are yet to get the POTS under control.

I hope you work out what is causing your anxiety.

Years ago before I knew I had the insulin issue and had constant very severe anxiety, I went onto clonazepam (Klonopin) at the low dosage Dr Cheney used to recommend (I say used too as I have no idea what he recommends nowdays).

That worked very well for me and I myself had no trouble stopping it when I wanted to do so.. it was a life saver for me at the time (I was getting so anxious that I felt like screaming, it was a nightmare). Be warned that benzos such as this drug is, can cause big issues in some when they build up tolerance to it, so I only suggest if if your anxiety is extremely bad and if you've tried all the other things.

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.

There are at least three of us at this website, all of us have Canadian defined CFS or meet international ME criteria.. who have had major severe affects from amitriptyline to the point it damaged our bodies causing like damage to our bowel and its peristalisis or to ones bladder which may be permanent (another ended up with paralysed bladder). (if you look at Wikipedia it actually does mention it can affect bowel peristalisis (well did when I just looked).

I do think from this that this drug can be dangerous to many who have ME as its not often we hear of severe long term affects like this on ME patients from a drug.

In my case a short time (2-3 week), low dose amitriptyline trial affected my bowel so much that I ended up having to see a bowel specialist as it made my IBS-C which I get with the ME far worst. It actually caused my bowel to end up having a bowel prolapse to which Im now prone to to this day.

In my case it took over a year to recover from the severe affects the amitriptyline had done during the low dose, short term trial of it for my sleep issues.. and ended up learning me with the only way I could go to the loo was with big doses of Epsom salt by mouth.. which was very discusting to taste - gagging.. (the poor person who here ended up with the paralysed bladder due to this drug, the damage was permanent).

One study on patients at a ME site.. showed this drug had on most of us bad side affects and only a small number of us found it to be helpful. Anyway, this was the worst drug trial Ive even done as it had lasting consequences which exist to this day so if you are going to trial this drug.. be warned. And stay well clear of it if you have IBS-C due to it being well known how this slows down the bowel.

 

[Kenshin]

I had severe anxiety issues etc which would come and go (far worst at some times then others).. mine turned out to be due to hyperinsulinemia which a smart specialist finally realised I had and got me tested for it. This also gave me severe premenstrual dysphoric disorder (severe mood changes with my period). That anxiety issue is now completely controlled by an extremely low carb diet (lower then diabetic diet)

I can also suffer from anxiety issues if I over do things and are crashing (to avoid that I try to avoid doing things which would cause crashing). POTS too can cause anxiety issues so I can get anxious if upright too long but are yet to get the POTS under control.

I hope you work out what is causing your anxiety.

Years ago before I knew I had the insulin issue and had constant very severe anxiety, I went onto clonazepam (Klonopin) at the low dosage Dr Cheney used to recommend (I say used too as I have no idea what he recommends nowdays).

That worked very well for me and I myself had no trouble stopping it when I wanted to do so.. it was a life saver for me at the time (I was getting so anxious that I felt like screaming, it was a nightmare). Be warned that benzos such as this drug is, can cause big issues in some when they build up tolerance to it, so I only suggest if if your anxiety is extremely bad and if you've tried all the other things.



There are at least three of us at this website, all of us have Canadian defined CFS or meet international ME criteria.. who have had major severe affects from amitriptyline to the point it damaged our bodies causing like damage to our bowel and its peristalisis or to ones bladder which may be permanent (another ended up with paralysed bladder). (if you look at Wikipedia it actually does mention it can affect bowel peristalisis (well did when I just looked).

I do think from this that this drug can be dangerous to many who have ME as its not often we hear of severe long term affects like this on ME patients from a drug.

In my case a short time (2-3 week), low dose amitriptyline trial affected my bowel so much that I ended up having to see a bowel specialist as it made my IBS-C which I get with the ME far worst. It actually caused my bowel to end up having a bowel prolapse to which Im now prone to to this day.

In my case it took over a year to recover from the severe affects the amitriptyline had done during the low dose, short term trial of it for my sleep issues.. and ended up learning me with the only way I could go to the loo was with big doses of Epsom salt by mouth.. which was very discusting to taste - gagging.. (the poor person who here ended up with the paralysed bladder due to this drug, the damage was permanent).

One study on patients at a ME site.. showed this drug had on most of us bad side affects and only a small number of us found it to be helpful. Anyway, this was the worst drug trial Ive even done as it had lasting consequences which exist to this day so if you are going to trial this drug.. be warned. And stay well clear of it if you have IBS-C due to it being well known how this slows down the bowel.

That sounds terrible, I hope you and the others continue to recover as much as possible,
this really reminds us all that pharmaceuticals are poison and people with M.E such as ourselves can be severely effected by them. Thanks for the warning and I wont be going near them, I already have digestive issues.

Can you elaborate on your low carb diet? I have trouble with carbs since getting ill but still eat them in moderate amounts to prevent weight loss (Im off wheat/gluten but can tolerate rice and a few of the lighter carbs)

 

[Hip]

There are at least three of us at this website, all of us have Canadian defined CFS or meet international ME criteria.. who have had major severe affects from amitriptyline to the point it damaged our bodies causing like damage to our bowel and its peristalisis or to ones bladder which may be permanent (another ended up with paralysed bladder). (if you look at Wikipedia it actually does mention it can affect bowel peristalisis (well did when I just looked).

I do think from this that this drug can be dangerous to many who have ME as its not often we hear of severe long term affects like this on ME patients from a drug.

...

And stay well clear of it if you have IBS-C due to it being well known how this slows down the bowel.

Thanks very much for that warning, @taniaaust1. It's good to know.

I wonder if this risk applies to all tricyclic antidepressants, or just to amitriptyline. I myself used a different TCA to try called imipramine, which has a lower incidence of side effects compared to amitriptyline.

Note that TCA antidepressant interfere with vitamin B2 metabolism: could that have played a role in the peristalsis problems/damage? Certainly taking vitamin B2 with TCAs is beneficial, and may improve the effects of these antidepressants.1

Note also that for ME/CFS, low doses of TCA's are stipulated (like 10 mg of amitriptyline), as normal doses can be too stimulating for patients.

 

[alice111]

Thank you so much for all your help everyone!
I will slowly make my why through and reply to each of your responses.

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.
Sushi

Thank you! Currently I don't have an m.e. Specializing doctor... If anyone has any recommendations of a doctor they have had positive experience with that would be awesome.

I have been to a ridiculous amount of specialists in all different fields (endos, rheum, gi, etc etc) all useless.
Right now I am unable to leave the house to make it anywhere but I have two docs im working with.
1. My local GP who is absolutely lovely and comes to my house! She is not specialist in m.e. Though
2. Dr Nancy Mullan who I work with over the phone -she specializes in Yasko protocol

 

[alice111]

@taniaaust1 yes if you could please elaborate on low carb diet? Is there a list you consult?

 

[alice111]

@Wayne and @Hip re the taurine- 2years ago I did a UAA test with yasko and it showed high taurine.. What do you think this means, could I still try this?

 

[alice111]

@Bob i could try lemon balm, but I am actually HYPOTHYROID... Which is weird because this anxiety seems to be as you said a symptom of hyper.. Confusing.

 

[alice111]

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.

Well I have tried a little bit, but to be honest I am quite confused about what is considered high histamine... The only thing I eat on the lists that I have found is chicken. But is this really a problem? It's basically what I live on currently...

 

[alice111]

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.



I tried super concentrated rx magnesium cream that work WONDERS the first time, I was so thrilled. But like everything... Next time and time after- nothing.



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.

I could give this a try!
Why do you snort it?



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?


Have not tried dhea, this is actually next on the list.
My menstrual cycle actually stopped about 6 months ago, one of the things that has come with anxiety.. Not sure what it means. But yeah, my estrogen is in the tank




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)
Anticonvulsants
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.

Great list thanks so much!!! Anyone experience with NDRI?

 

[Bob]

@Bob i could try lemon balm, but I am actually HYPOTHYROID... Which is weird because this anxiety seems to be as you said a symptom of hyper.. Confusing.

OK, then it's not wise to try Lemon Balm, as it will interfere with your thyroid meds. Have you tried reducing your thyroid medication? Too much thyroxine can cause anxiety (mental overstimulation) in the same way as hyperthyroidism.

 

[alice111]

@Hip sorry I'm retarded.. I replied to WITHIN the quote.. So my answers to you are in the yellow area.
Brain fog...

 

[Mary]

@alice111 - I noticed your melatonin levels were very high on your saliva test (161.8 out of a range of 0.1 - 25), and found an article which states:

"Excess melatonin is associated with seasonal affective disorder (SAD), lowered estrogen/progesterone ratio, low thyroid and adrenal function, and hypotension." see http://restorativemedicine.org/book...al-disorders/melatonin-deficiency-and-excess/

Also your cortisol levels tend to be low all around.

I had problems with weak adrenals several years ago and my chiropractor (who does muscle testing) gave me an adrenal glandular - Drenatrophin PMG by Standard Process which was fabulous stuff, my energy started coming back within a couple of days. I had to take a high dose initially because my adrenals were so weak. Then I learned more about adrenal health and coping with stress (meditation is great for this), pantothenic acid is crucial for adrenal health, minimizing caffeine, sugar and alcohol, etc. Someone posted that my chiro was a lucky guesser because he helped me so much through muscle testing - basically saying MT was bunk - and all I can say is I wish my doctors were such lucky guessers if that's the case! But I don't believe it's luck and in any event MT is relatively inexpensive and it helped me on numerous occasions when the doctors were clueless. One way to find a practitioner is through the Standard Process website, which has a search feature for practitioners who use their products and hence are likely to do MT.

Also, my chiropractor explained that adrenal glandulars will allow the adrenals to rest, so they can heal, whereas taking Cortef or something similar will push the adrenals to work even harder, thus eventually depleting them further.

Good luck - you've gotten a lot of good information from a lot of people - I hope it helps -

 

[0kaygrl]

Re: low histamine diet, chicken is fine, as long as it doesn't sit in the fridge long. I get mine frozen and I don't eat leftovers (unless I freeze them). I mostly avoid very high histamine foods like cheese, bacon, tomatoes, avocados, and spinach. As for moderate histamine foods I eat them occasionally, and when I do I take DAO enzyme to break down the histamine. I also avoid histamine releasers like oranges, pineapple etc. this diet helps with fatigue and anxiety. When I go off it, both return...

 

[Crux]

If the anxiety is from low GABA, then a ketogenic diet may help.
http://www.drmyhill.co.uk/wiki/Ketogenic_diet_-_a_connection_between_mitochondria_and_diet

The thing is, many of us have paradoxical reactions to foods and supplements. The types of fats in the ketogenic diet may be calming to some, and overstimulating to others. ( I tried MCT oil from coconut oil, and found it to be way too stimulating. I do respond to animal fats, though.)

The elevated taurine could mean B6 is low. B6 is involved with GABA formation.

I agree that lowering carbs. can lower anxiety. It's hard to find the best amount for an individual.

 

[alice111]

@Hip re arginine you said it inhibits EBV, I was under the impression that it activates herpes type viruses? Is this not the case? Also, why do you take it intranasally? I find this interesting.. I wonder if other supplements woudld benefit from doing this?

 

[oceiv]

Lots of good advice in this thread regarding anxiety, thanks.

@alice111 Wanted to let you know that I had bad side effects from DHEA. I thought I ran across a thread in here with other patients who did as well, but I can't find it now (maybe someone else can). At any rate, my DHEA was low, I was prescribed DHEA. Very quickly some of my ME/CFS symptoms worsened, especially my OI symptoms, like swelling feet. I caught onto the effects, discontinued and fortunately the side effects subsided. There was no explanation for why DHEA affected me in this way, but then again, I have previously been in that 1% of people who has rare side effects from other meds and supplements, too.

Since every patient is different in how they respond, if you're adding new supplements or meds, just try one new thing at a time and pay close attention to if your symptoms worsen.

Below is the best mindfulness meditation, I've found. Also available to buy on CD, by download and phone apps. It helps calm down the nervous system. It can help with anxiety, pain and other symptoms, too. Not that it's a cure, just one treatment. Gets more effective as you do it more. Mindfulness meditation has proven helpful in illnesses/injuries from heart disease to chronic back pain. Lots of studies have been done on the difference between brain scans of those who are in the process of meditating and those who are not. The difference can be visually seen on the brain scans. Though, it's not yet known why meditating helps.

You can ignore the still images in this video/ Look away or just close your eyes and listen to only the audio. Jon Kabat Zinn - Body Scan Meditation:

.