Completely eliminated my severe anxiety symptoms with three supplements!

[Hip]

@Kenshin
I tried cannabidiol (CBD), but it made me feel unfocused and spaced out (see this post). Though others on this forum have got good results from CBD.

 

[Little Bluestem]

Can someone describe the differences between "normal" anxiety and anxiety as an organic symptom of M.E?

When I was going through my psychologising stage (pre-diagnosis), they were wanting me to take their latest toy, the SSRIs. I said if I had any mental problem, it was anxiety, not depression.

One psych gave me a book that described the various types of anxiety and told me to figure out which type I had. I found that I did not meet the requirements for any of them. I was particularly amused by generalized anxiety disorder. To have it, you have to have all of one set of symptoms and a certain number of a second set of symptoms. That seemed fairly specific to me. [To be clear - I was amused by the name. I am sure there is nothing amusing about having it.]

I just had a general ‘background’ edginess. When I would experience an anxiety-provoking situation, I would actually feel a little better. It was like I had something to focus that edginess on.

 

[Hip]

I was particularly amused by generalized anxiety disorder. To have it, you have to have all of one set of symptoms and a certain number of a second set of symptoms. That seemed fairly specific to me.

I think the name generalized anxiety disorder was coined because people with this condition experience anxiety in a wide range of circumstances and for much of time, hence "generalized". This contrasts to anxiety disorders such as phobias, in which fear and anxiety is triggered only in a specific situation; and contrasts to panic disorder, in which the anxiety only arises in acute attacks (panic attacks); and social anxiety, where the anxiety is about what other people think of you or how they evaluate you, in other words, how you come over to other people.

These different forms of anxiety disorder are associated with different biochemical or metabolic abnormalities, and so a drug treatment for one type of anxiety disorder may not necessarily help another.

I just had a general ‘background’ edginess. When I would experience an anxiety-provoking situation, I would actually feel a little better. It was like I had something to focus that edginess on.

In the first few years of having GAD (which predates my ME/CFS), I was similar to you: I would get bad anxiety from situations involving cerebral, analytical and factual circumstances (ie, things that affect the reasoning, thinking mind), but when a powerful emotional situation occurred (like being confronted by an aggressive and angry person), this would actually calm me down.

So it seemed that when my brain was operating primarily on a strong emotional level, I felt calm and normal; but when operating on an intellectual cerebral level, using my thinking mind, nearly everything I thought about induced potent anxiety for no apparent reason.

As a result, I started avoiding people that had an intellectual personality, and began hanging out with people who had a more simple and down-to-earth emotion-based personality. The latter personalities I would find calming and easy to be with; the former would tend to greatly ramp up my anxiety and edginess, because their conversation would activate my thinking, analytical brain.

I am not sure if there is a name for this type of anxiety which affects the thinking mind, but not the emotional mind.

 

[Little Bluestem]

My edginess went on for over a decade, until I got some Xanax. It was fairly mild and did not vary much. It may have gotten slowly worse over time, as I was surprised at how much better I felt when I got the Xanax up to an effect dose. Dr. Cheney's up-regulated autonomic nervous system theory makes a lot of sense to me.

 

[Hip]

@Little Bluestem
I never actually tried any benzodiazepines for my anxiety disorder, partly out of my apprehensions of tolerance and addition. It would have been good to try one of these drugs, just to compare their efficacy to my anti-anxiety protocol detailed in this thread.

 

[MeSci]

@Little Bluestem
I never actually tried any benzodiazepines for my anxiety disorder, partly out of my apprehensions of tolerance and addition. It would have been good to try one of these drugs, just to compare their efficacy to my anti-anxiety protocol detailed in this thread.

I took them in the early stages and found them very helpful for anxiety, insomnia and even nausea. I didn't experience any adverse effects unless you count sedation, which in the circumstances was actually very welcome. I have had several courses of benzos throughout my life and never suffered problems with them AFAIK, but I know they can pose severe dependency risks for some.

I wouldn't take them now except perhaps very short-term, due to the known risks and the fact that I may well be a lot less tolerant of them now. They may also increase the risk of dementia.

 

[Hip]

There was a very interesting survey on ME/CFS patient benzodiazepine use, set up by Cort Johnson. See:

Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

In this survey, it was found that 32% of the people on Klonopin (clonazepam) experienced severe or very severe side effects when trying to stop this drug.

The survey also found that the side effects of Klonopin withdrawal lasted for longer than 6 months in 18% of patients.

Though note that most people in the survey had been on a benzodiazepine for a long period of time (more than 5 years in 38% of cases).

However, one of the limitation of the survey is that, due to its design, it was unable to determine whether the patients with the worse withdrawal problems were those taking higher doses of Klonopin.



So it would seem that benzodiazepines are a bit of a gamble, in that around 1 in 3 ME/CFS patients will get these severe side effects when stopping the drug.

 

[MeSci]

There was a very interesting survey on ME/CFS patient benzodiazepine use, set up by Cort Johnson. See:

Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

In this survey, it was found that 32% of the people on Klonopin (clonazepam) experienced severe or very severe side effects when trying to stop this drug.

The survey also found that the side effects of Klonopin withdrawal lasted for longer than 6 months in 18% of patients.

Though note that most people in the survey had been on a benzodiazepine for a long period of time (more than 5 years in 38% of cases).

However, one of the limitation of the survey is that, due to its design, it was unable to determine whether the patients with the worse withdrawal problems were those taking higher doses of Klonopin.

So it would seem that benzodiazepines are a bit of a gamble, in that around 1 in 3 ME/CFS patients will get these severe side effects when stopping the drug.

I suspect that there is a substantial genetic element in tolerance and susceptibility to dependence on psychoactive drugs, and probably others. I studied drugs and addiction during my Bachelor's and Masters degree, and the evidence does support this. There can be individual differences at neuronal synapses, for example. The synaptic gap can vary in width, thus affecting the amount of neurotransmitter that can cross the gap. There can be differences in how much neurotransmitter is released from one neuron, and in how many receptors there are on the receiving neuron, for example. And IIRC the drugs themselves can change some of these variables in the short or longer term.

Re benzos being linked to dementia, it may not be a causal link. It may be that people who use benzos are more prone to insomnia - hence the benzo use - and lack of sleep is itself a risk factor for dementia.

 

[Little Bluestem]

In this survey, it was found that 32% of the people on Klonopin (clonazepam) experienced severe or very severe side effects when trying to stop this drug.

Isn't Klonopin the worst of them for withdrawal problems?

 

[Hip]

Isn't Klonopin the worst of them for withdrawal problems?

Is that the case? I was also wondering why the survey just asked about Klonopin use, and not other benzodiazepines such as Xanax or Valium.

 

[npeden]

My working theory of the cause of GAD, which is briefly outlined in this post and this post, is that there is an overabundance of the neurotransmitter glutamate in the anxiety circuit areas of the brain. Glutamate acts like the volume control or the gain control on neurons: the more glutamate, the more the neurons amplify their input stimuli. So if there were high levels of glutamate in these anxiety circuits, this is going to turn the volume on all the neurons right up, and you might imagine that the anxiety circuits are then going to be on overdrive.

Certainly there is good evidence that glutamate may be involved in anxiety: when glutamate antagonists are locally infused into the amygdala, these have been shown to decrease fear and anxiety in animals. So reducing the effects of glutamate is known to decrease anxiety.


But where does this excess glutamate arise from? Well, when you get inflammation in the brain (neuroinflammation), which might arise from a brain infection with an enterovirus (a virus strongly linked to triggering ME/CFS), there is a hypothesis that high levels of glutamate will be generated from this inflammation. So my idea is that if this inflammation-derived glutamate is released into the anxiety circuit areas, you will get GAD.

In order to counter this anxiety that I presume is driven by glutamate derived from brain inflammation, my strategy is to take anti-inflammatories that specifically target and reduce brain inflammation. That's what many of the anti-anxiety supplements listed in this thread do. And they seem to work very well for a number of patients with GAD, according to the feedback I have received from people.


Glutamate has also been postulated to underlie PTSD, so these same brain anti-inflammatories may also be very beneficial for PTSD (although I have not yet had anyone with PTSD try them).

 

[npeden]

Hip, I absolutely agree. I am riddled with GAD1 snps. My genetic nutritionist thinks the glutamate will not reduce until I get the heavy metals out so this is going to take time. I still have amalgams and then there is chelation, especially of the brain.

But I am generally now anxiety free through I do not sleep well (we are going to try SAMe at dinner time). The anxiety went away when I did two things: got off ALL protein powders as some contain natural glutamine and some add it. Bone broth is high glutamine. Glutamine is anxiety producing for us GAD1s. The second thing that has really helped is being on a ketogenic diet. Somewhere I think the NIH has paper on ketogenic diets for ADD, one of my diagnosis. I have snps for bipolar, mdd, gad, add and PTSD. I do pretty well, using hydroxy b12 for COMT and passion flower tincture for MAO A. We are still struggling with all those nasty GAD1s. Christmas chaos almost knocked me down good. My whole family, who won't be tested must be full of glutamate. To say it is excitatory is an understatement.

 

[MeSci]

Hip, I absolutely agree. I am riddled with GAD1 snps. My genetic nutritionist thinks the glutamate will not reduce until I get the heavy metals out so this is going to take time. I still have amalgams and then there is chelation, especially of the brain.

But I am generally now anxiety free through I do not sleep well (we are going to try SAMe at dinner time). The anxiety went away when I did two things: got off ALL protein powders as some contain natural glutamine and some add it. Bone broth is high glutamine. Glutamine is anxiety producing for us GAD1s. The second thing that has really helped is being on a ketogenic diet. Somewhere I think the NIH has paper on ketogenic diets for ADD, one of my diagnosis. I have snps for bipolar, mdd, gad, add and PTSD. I do pretty well, using hydroxy b12 for COMT and passion flower tincture for MAO A. We are still struggling with all those nasty GAD1s. Christmas chaos almost knocked me down good. My whole family, who won't be tested must be full of glutamate. To say it is excitatory is an understatement.

There seem to be some conflicting reports on the glutamine-glutamate connection, and maybe it varies a lot between individuals and perhaps with diet.

Glutamine is recommended to help heal a leaky gut, which itself can relieve anxiety, and I don't seem to have had any problems with it. There have been discussions on the interconversion between glutamine and glutamate, and it is a dynamic, continuous process IIRC, presumably dependent on conditions in the body and brain.

 

[Gecko]

I think I may try the first 3 you recommend. N-acetyl-glucosamine - is simply Glucosamine or Glucosamine sulphate ok?

 

[kisekishiawase]

Why are tumeric and curcumin different? Isnt curcumin derived from tumeric and tumeric health property is from the curcumin?

 

[npeden]

Is that the case? I was also wondering why the survey just asked about Klonopin use, and not other benzodiazepines such as Xanax or Valium.

Hip, I have quit klonopin several times and it is not so bad. I did have a stupid psych put me on it for sleep so I would have to forfeit sleep to detox. So the way I do it, when I want to quit, is take it earlier and earlier and dose at less and less. I have not had trouble with it but I have fallen back into it currently.

 

[Hip]

Hip, I have quit klonopin several times and it is not so bad. I did have a stupid psych put me on it for sleep so I would have to forfeit sleep to detox. So the way I do it, when I want to quit, is take it earlier and earlier and dose at less and less. I have not had trouble with it but I have fallen back into it currently.

According to the survey, only 1 in 4 people get the severe or very severe symptoms on quitting benzodiazepines.

 

[Tortoise]

I wonder how many of you have tried the N-acetyl glucosamine now? I've ordered some and am going to give it a try. I've had severe physical anxiety-type symptoms since last summer, which came on after a respiratory virus and several months of costochondritis. I'd already had ME/CFS for 20 years.

Which symptoms has it helped most with? I've been getting palpitations (slightly less since starting vegepa), burning pains in the head & body, nervousness & feeling on edge all the time, sound sensitivity for everyday sounds, worsened light sensitivity, headaches, nausea, and also flattening of mood.

 

[perchance dreamer]

So many people seem to do well with NAG, but it made me feel more spacey and brain fogged.

 

[Hip]

Hip, I absolutely agree. I am riddled with GAD1 snps. My genetic nutritionist thinks the glutamate will not reduce until I get the heavy metals out so this is going to take time. I still have amalgams and then there is chelation, especially of the brain.

But I am generally now anxiety free through I do not sleep well (we are going to try SAMe at dinner time). The anxiety went away when I did two things: got off ALL protein powders as some contain natural glutamine and some add it. Bone broth is high glutamine. Glutamine is anxiety producing for us GAD1s. The second thing that has really helped is being on a ketogenic diet. Somewhere I think the NIH has paper on ketogenic diets for ADD, one of my diagnosis. I have snps for bipolar, mdd, gad, add and PTSD. I do pretty well, using hydroxy b12 for COMT and passion flower tincture for MAO A. We are still struggling with all those nasty GAD1s. Christmas chaos almost knocked me down good. My whole family, who won't be tested must be full of glutamate. To say it is excitatory is an understatement.

@npeden

Would you have any weblinks detailing those GAD1 SNP mutations that you say make glutamine anxiety-producing? Myself, I have no problems with glutamine; I can take two or three heaped teaspoons of glutamine powder daily, and if anything it reduces my anxiety levels.

I am always looking out for good ADD/ADHD treatments though: the virus which triggered my ME/CFS also hit me with an episode of viral meningitis, after which I developed pretty severe ADD/ADHD-like symptoms. How quickly does the ketogenic diet improve your ADD symptoms, would you say? In other words, if I a started a ketogenic diet today, how long would it take before I see improvements in my ADD/ADHD symptoms?