R U Amygdalized?

[Christina]

I'll repeat my story, posted as a comment to Cort's interview with Ashok:

http://aboutmecfs.org/blog/?p=495


Hey all Full disclosure Ashok sent me a set of the DVD gratis, on the understanding that I would blog about it, and as its been six months the recommended time to become fully well I can start to give an honest answer now.

At $190 I think the program is a good investment a valuable tool for managing the stress response that sends many of us into a the territory where we are the most agitated, and our symptoms magnify 100 times and we get really sick. I did the program religiously giving it hours and hours a week last winter. Coincidentally, some unpaid writing opportunities came my way. As ever, I felt myself become over-aroused, excited by the opportunity to write, but stressed at the vast number of things I needed to do to organize my material. I felt myself on the verge of a collapse I was getting way outside my envelope as Dr. Jason says. (Cort Id love to see Dr. Jason and Ashok Gupta have a discussion!) I used the technique, which is no great mystery just asserting a little OCD exercise in to disrupt your panic-stress-illness inducing thought pattern. It was a save, I made my deadline and produced articles I was really proud of.

The DVDs are quite lengthy, detailed, well-produced, soothing, intelligent. Why is this important? There are so many coaching programs out there by chronically ill people that are hard to use, poorly executed, and amateurish. I care about presentation, I care that things have been thought out.

OK the downside: this works very well for the stress response. But it does nothing for post-extertional malaise, which I get if I spend more than 2-3 hours on the computer. My problem is, for several years, I seem to be at the recovery level of his cured patients. Meaning, if I take my supplements, rest, meditate, pace myself, dont multi-task, do yoga, do things I enjoy that is, stay within my envelope I can be relatively well.
Ashok recommends we spend 50% of our waking time in a kind of "down" mode -- doing things relaxing and enjoyable. But this is hard to sustain once one goes back to a full-time stressful job, plus family and home responsibilities.


The Retraining program has allowed me to control the stress response of work/sensory overload a bit. But if I walk too much as I did last weekend on a trip to New York the technique doesnt help. I still needed a few days of reduced activity afterward. And mind -- I'm not someone who ever stopped exercise completely, who ever stopped doing things despite this. I was never "deconditioned" as he seems to assume of people. Still -- a missed meal, too long out of the house/driving/writing/talking on the phone -- the technique doesn't help with this -- only the initial "fear" response of "if I do this I'll get sick." I do without the fear response -- but I can still get sick.


I also have not been able to give up my supplements. He claims that everything cascades from the stress response -but look, Im almost 50 even fully healthy people my age need a lot of the supplements to feel decent.


To me, the ultimate test of Ashok Guptas Amygdala retraining program is can we go back to work full time, in a self-sustaining career? Time will tell in my case. One issue is once youre feeling better, and able/trying to work more you just need to do your work. Professional writers I know, who actually support themselves with their writing, must work 11-14 hours a day. Theres no way around it. Its hard to do that, and spend hours a day doing the technique.

Its the same issue I found when I first got sick, close to 20 years ago. I was canned from my Wall Street job, and thought the solution was self-care and lifestyle management. Unfortunately, a well-paced freelance life didnt afford me enough money to live. So back I went to a full time job, and instantly I got very sick. When my ability to pace my life and meditate, exercise, etc. was gone so went my health.

Id love to be able to say that the Amygdala Retraining was a full cure, but for me it hasnt been. I continue to work with the technique and the advice which is common sense stuff, nothing crazy.

Bottom line I think it would be worth the $190 most of us spend that in supplements in a month, and unlike a series of acupuncture or semester of yoga its something you can use forever.

 

[Rosalie]

thanks for the definition

I was wondering what AR was and now I know, I guess I should have read your post earilier. I can identify with your findings of the program, it seems that we can take a little bit of advice from everywhere that will help, but overall there doesnt seem to be anything specific. I did the CBT training with Dr Alison Bested in Toronto, she is a god send and a wonderful person. She too had a lot of common sense things to apply. But in the long run we have to apply what works best for us as individuals. I can only speak for myself but sometimes I'm my own worst enemy.

Rosalie

 

[Christina]

Amen!

I do want to add -- Ashok's program really is very helpful in improving quality of life. He has on his site and on You Tube short clips comprising the first DVD (of about 6, I think) and you can see he's not a Snake Oil Salesman.

Also -- he says give it six months. I always need two or three times as long to learn/do anything -- so for me it's an ongoing practice, like yoga -- not a push button cure.

 

[LaurelB]

Thanks Christina

I really appreciated your summary of your experience with the AR therapy/program.

I've been hesitant to purchase and give his program a try for one main reason, and I wondered if you or Cort or someone who has tried it could address this concern for me. Since I haven't listened to the DVD's yet (just the free ones on youtube), my understanding could be way off, so please feel free to correct me.

It seems like, in part, Ashtok believes or our brain is stuck in a stress response, and in the idea that we will crash following activity, and his mind exercises help us to get out of this stressful way of thinking. This is way over simplified, I know, but am I correct in that general statement?

The reason that concerns me is this. Back when I was still working full-time with CFS, I went through a period of sort of "new age" exploration -- I read books by Deepak Chopra, Wayne Dyer, Carolyn Myss, etc. I also was seeing an internationally known alternative health doctor (who shall remain nameless). The books and the advice of this doctor was essentially this: you are only limited by the limits of your thoughts. The doctor encouraged meditation where I visualized myself well, and told me to correct my thoughts to believe I was limitless and disease free, and my body would soon follow.

I have to admit, I went into this gung-ho. It's an empowering idea. The problem was, it caused me to essentially ignore my body. I continued to work full time, tried to maintain a social life, and ignored my limits because I thought all my meditating and positive thoughts would ensure I wouldn't crash. But a few months into this way of thinking, I had a crash so severe I was left bedbound and unable to speak. I never recovered.

So, I'm afraid to go down this route again. I still meditate, and I feel am a pretty calm natured, stress free person (less the stresses of my health). So I wonder how his therapy differs from the ideas that were given to me above, and whether Ashtok gives a healthy balance between listening to your body and positive thinking --- or if it's all "positive thinking will make you better" type stuff?

Thanks for anyone who can provide clarification for me!!

Laurel

 

[Jody]

Hi Laurel

I will try to clarify a bit.

I have also been down the other road you describe.

This IS different.

This isn't saying it's all in your head, that all the power to change is in your thoughts.

If I get it right, this is not a mental gambit. This is physiological, but recognizing the connection between the mental, emotional and pysical built into our bodies.

So it's more like, since we have a tool at our disposal, our minds, we can have an effect on some things. We can try to focus on more positive hopeful things, with our thoughts, knowing that this releases positive healing chemicals through us when we do so (this is science). Can move us out of sympathetic nervous system and it's draining effects into parasympathetic which is restorative to the body, and therefore the mind.

We can also choose to change our behaviours and our habits knowing that this can have a healing effect on the body. We're aware of things like taking rests during the day, trying to cut back on activities that wear us out. This is physically restorative (slowly, I'll grant you but the principle remains.)

Basically I think it's like this -- take the adrenals for example. They are a physical reality operating according to physical laws. If they are drained we feel it physically, mentally and emotionally. Source of the problem though is still physical. In this case, if you can take care of the physiological problem, (depleted adrenals) you will effect your physical, mental and emotional self.

But the paradigm is physiologically based.

He isn't saying it's all in the thoughts and intentions world. But he is saying, SOME things can be changed through that arena of thoughts and intentions. Some alterations in biochemistry can make some difference in our overall condition.

I have also been supremely allergic to that new age stuff that I was into. I steer clear of anyone who sounds like it. I have been interested to discover over the past 2 yrs websites that suggest similar sounding stuff (at first glance it is similar) but underlaid by science. Real science, with neurotransmitters and stuff.

I don't know if I've helped here or not. Feel free to ask me about anything that's not clear or sounds weird.

 

[Jody]

LaurelB

Here a few articles from my website that might help clarify.

"Sympathetic System -- Not What You'd Think" at http://www.ncubator.ca/Sympathetic_System.html

"Psychoneuroimmunology -- Help From Within" at
http://www.ncubator.ca/Psychoneuroimmunology.html

and maybe this one

"Left Brain, Right Brain" at
http://www.ncubator.ca/Left_Brain_Right_Brain.html

My oversimplified, non-scientific take on a scientific world.

Good luck.

 

[Jody]

A few more thoughts on the subject.

It is difficult to talk about parts of the brain that we associate with the thoughts and emotions, and focus only on the part of the brain.

I will try an analogy with another part that we don't connect with thoughts and emotions.

I am on a low carb diet in part because I am insulin resistant. That means that when insulin is released after I eat carbohydrates, my body releases too much insulin. Like, the button gets stuck.

Okay. In order to protect myself from this over-reaction of the pancreas, I avoid the trigger, that is I avoid most carbohydrates, (except for vegetables and even there I restrict potatoes and corn). This may even eventually make it possible for the body to heal the malfunction that floods me with insulin.

So. Same idea with the amygdala. Sort of. Do you see where I'm going?

Amygdala is malfunctioning (according to Dr. Gupta), it is hypersensitive and goes off when it shouldn't. So, use methods to minimize triggering the amygdala's itchy trigger finger because if you don't it will flood you with unwanted chemicals.

Don't know if I've been able to express this properly.

Let me know.

 

[LaurelB]

Thanks, Jody

I appreciate your helpful and thoughtful replies. Your comments do make sense, and I am still absorbing some of them. It does sound a bit different, and I think it may be worth a shot in the end. I've certainly spent more money on other treatments before, and if nothing else, perhaps it will provide me with new and better relaxation techniques.

I have just been so cautious because of my previous experiences in this area, and wanted to make sure it wasn't another "change your thoughts; change your life" type thing. I don't do well with those, as I tend to get overconfident and stop listening to my body -- thus ending in pretty severe crashes. It's funny that it's often when I'm lost in the joy of the moment (forgetting my limits) that I tend to crash hardest. I often wish I had someone guide me on how to be more cautious, and not less so.

Anyway, given my state as it is, I just feel I have to be careful with these type of things. But it's certainly worth a try, and what you wrote makes me feel better about doing so. I have read a bit on psychoneuroimmunology in the past, and it's definitely a fascinating area.

Thanks again for your thoughtful comments. Thanks, too, for your comments on my blog/story in the personal stories section -- much appreciated!

Best wishes,
Laurel

 

[Jody]

I understand your caution.

I share it.

I used to belong to a Pentecostal church, and leaned heavily on Word of Faith teachers for about 10 yrs. Speaking things out and so forth.

Much of it was actually very helpful to me but ... it was while involved in this that I became chronic.

When I got too sick I quit going and went through a heavy re-evaluation period. Tossed everything, including God. Just completely avoided anything that hinted of any of this, for a number of years.

My best suggestion is, focus on the science. If there is good science backing it up, then maybe check it out. Even if it does smell of some of the old stuff.

Some of the things that have helped me this past year (along with some very important supplements and resting techniques I must emphasize ) have been things that I was sort of familiar with from my old church.

Quite skittish checking these things out. Took my time. No jumping in whole hog -- on anything.

Some of the old things presented in more solid packaging -- positive affirmations, to use an old term. But now, it is realizing that as I allow my thoughts to rest on positive things, my ol' physiological body is hit with healing chemicals. And I can do that as often as I choose. And, it cannot hurt me.

Alot of us have had a mind/body dissociation that has contributed to our fall. Didn't cause it, ok? But sure didn't help healing afterward.

We ignored the body's signals of exhaustion, let the mind lead the way. Till the body made the mind quit ...

So, always try to be aware of what your body is saying, so it won't have to yell it anymore.

Another thing from the olden days, re-packaged and tweaked, is reading about singing and healing vibrations, etc. The sort of thing that I normally back away from anymore. Quickly. Reminds me of too many fruity people I used to know.

But, there is a science that can be checked out.

Vibrations are not just new age and old hippies anymore. And this is, again, something within most of our reaches, even if all you can do is whisper ... whisper a hum, a piece of a song ... Or if that is physically uncomfortable, just sing it in your head. Send yourself a few nice endorphins or neurotransmitters.

It can't hurt you. It may send a bit of physiological healing your way.

I can't remember who said this, I think Dr Sarah Myhill or Dr. Alison Bested -- and it's a paraphrase at best -- The biochemistry of hope is completely different from the biochemistry of despair.

We can take a little active part in this.

Okay! I am going to start getting lost in this post any minute now so I'm gonna end it.

 

[Jody]

Oh, Laurel,

I was not specifically encouraging you to get Dr. Gupta's treatment.

It sounds like a good one from what I've heard but I don't know that personally. I have seen his free stuff on YouTube, but that's all.

I was speaking in a more general way about some of the Mind/Body schools of thought out there.

 

[Cort]

What a great thread this is. Ashok course does not ask you to think the right thoughts and use them to overcome the problems present. It basically asks you to try and identify things that trigger the stress response; these things will come up all the time - many of them have nothing to do with CFS in my experience.

Simply identifying the trigger is really half or 3/4s of the battle - once you can see the effect start you are in some sense freed from it. the program then asks you in a gentle way to stop that negative thought - which actually I think is a bit problematic - then you go through a couple of steps that ask you to kind of step into a healthy state.

Once you're in that at least somewhat healthy state then you can decide whether you should proceed with whatever activity you want to engage in.

You're never asked to ignore your symptoms or try to overcome them; each time you do the process it should, theoretically, lead you to a new kind of healthful zone. Again - once you're in that spot theoretically you can make a clear-headed objective decision about whether you should - go to the store or whatever. (Of course on the way to the store you're sure to encounter other triggers).

My problem has been identifying the triggers. You have to slow yourself way down to identify them. I'm surprised though at how pervasive they are; little subconscious thoughts that have the power to really flatten one.

I actually don't do the program very much; I tend to do other things that it kind of lead me towards. When it works, though, it can be surprisingly effective.

Very (VERY) interestingly the doctor that saved 'patient X' (who's identity I think will not be a secret for long) believes that the main damage in ME/CFS occurs in the amygdala (!) but his thesis starts with immune dysregulation and opportunistic pathogen growth.

 

[Christina]

Interesting hypothesis

Cort -- I'm interested in this hypothesis -- about the damage starting in the amygdala. I think a lot of us had a brain infection at some point -- and this is where the cognitive difficulties start. The brain can slowly heal itself. Very likely, the Amygdala response Ashok seeks to address is an attempt by the brain to protect itself from further damage as it heals.

I do think it's a combination of these two things -- a brain infection, and the stress response -- and I'm looking forward to hearing more on this.

 

[Christina]

I Share Your Fears

I also have/had the same experience -- ignoring the body -- overdoing and having a replapse. To be honest -- back in December when I first started doing the program seriously, I had a totally no CFIDS health issue. I got a foreign object in my eye. It was excruciating. I went through the weekend with this, doing the technique, doing yoga, carrying on as usual. Telling myself -- this isn't a big deal. Well -- it took me till Tuesday to get to the opthamologist. Because the Amygdala retraining was telling me I was over-reacting to things like pain -- I was thinking -- this is just a minor thing. Well -- it turned out it was important and the excurciating object had to come out. And I was off to New York for four days! Thank God I over-ruled the advice that all I needed to do was interrupted that negative thought! Sometimes you DO have to pay attention to pain.

So I share your concerns here. I think there are a subset of CFIDs people who are sick and afraid and stay in their shell, and another subset, like you or me, who just barrel along and plough through until we wind up on a stretcher. For us -- we have to be very cautious and "aware" using AR or any other program. Because there is an aspect of -- "your making too big a deal of your symptoms."


"It seems like, in part, Ashtok believes or our brain is stuck in a stress response, and in the idea that we will crash following activity, and his mind exercises help us to get out of this stressful way of thinking. The reason that concerns me is this. Back when I was still working full-time with CFS, I went through a period of sort of "new age" exploration -- I read books by Deepak Chopra, Wayne Dyer, Carolyn Myss, etc. I also was seeing an internationally known alternative health doctor (who shall remain nameless). The books and the advice of this doctor was essentially this: you are only limited by the limits of your thoughts. The doctor encouraged meditation where I visualized myself well, and told me to correct my thoughts to believe I was limitless and disease free, and my body would soon follow.

I have to admit, I went into this gung-ho. It's an empowering idea. The problem was, it caused me to essentially ignore my body. I continued to work full time, tried to maintain a social life, and ignored my limits because I thought all my meditating and positive thoughts would ensure I wouldn't crash. But a few months into this way of thinking, I had a crash so severe I was left bedbound and unable to speak. I never recovered.

So, I'm afraid to go down this route again. I still meditate, and I feel am a pretty calm natured, stress free person (less the stresses of my health). So I wonder how his therapy differs from the ideas that were given to me above, and whether Ashtok gives a healthy balance between listening to your body and positive thinking --- or if it's all "positive thinking will make you better" type stuff?

Thanks for anyone who can provide clarification for me!!

Laurel[/QUOTE]

 

[LaurelB]

Christina wrote:
"So I share your concerns here. I think there are a subset of CFIDs people who are sick and afraid and stay in their shell, and another subset, like you or me, who just barrel along and plough through until we wind up on a stretcher. For us -- we have to be very cautious and "aware" using AR or any other program. Because there is an aspect of -- "your making too big a deal of your symptoms."

Completely agree with you here Christina! This is my biggest concern. I already tend to ignore my body and my symptoms to a fault -- it is for this very reason I ended up as sick as I am. Even now, after all you'd think I would have learned by now, I still tend to try to push past what my body is telling me on a regular basis. So, that's why I'm so hesitant.

But Cort and Jody's comments have me feeling a bit more comfortable about it. I'm still pondering it over.

Oh, and Jody -- I know you weren't trying to convince me to buy it -- just offering your thoughts, which were very helpful!

Cort -- I'm fascinated to hear more about Patient X's recovery! And who is doctor is.

Christina -- So glad you took care of your eye!! Yikes. An object in your eye can never be a good thing. Glad you are doing better!

Thanks for all the helpful replies.

 

[Cort]

Actually the AR had the opposite effect on me; it cause me to reduce my activity levels substantially. (this seems to be the status quo for most patients - they need to cut back further - in many cases, according to exercise physiologist Staci Stevens, ALOT further).

I generally kept on until I crashed but when I started the AR I started watching my body more carefully. It made me realize how much stress I was putting my body under by overexercising (walking!). The more I watched myself the more I cut back!

Now I'm little bit by little bit walking better; that is, my pattern of walking is better- my muscles aren't so clenched, I feel like I'm using my fine motor muscles instead of my big muscles, I'm more relaxed - so after cutting back I'm walking more - not a heck of alot but definitely more.

 

[LaurelB]

Thanks for this clarification, Cort! Very interesting, and so glad to hear it's helping you. I'm leaning more and more towards trying it.

 

[Marylib]

Amygdala retraining, other thoughts

This is an interesting thread.

I have always thought that the price of Ashtok's training is reasonable and that he is sincere. But like Laurel (? Sorry cannot remember names well!) I have never thought it would help me be able to exercise without relapsing. Which is the acid test for me.

That having been said, it seems to be helping people and that is good. I can imagine that feeling some freedom from the fear of the illness, or fear of over-extending can make one much happier.

I agree that there is alot of power in sound, in singing, humming, etc. Not too new age at all -- quite "old age". I refer to simply humming or singing a pleasing, relaxing, beautiful, upbeat song. Even better is the power of ancient spiritual techniques involving mantra. Very helpful on every level -- physical, emotional, spiritual, mental. (I am not a "religious" person by any means, so far be it from me to convert anyone to using mantra's -- but I find it wonderful.)

Marylib

 

[Jody]

I agree that there is alot of power in sound, in singing, humming, etc. Not too new age at all -- quite "old age". I refer to simply humming or singing a pleasing, relaxing, beautiful, upbeat song. Even better is the power of ancient spiritual techniques involving mantra. Very helpful on every level -- physical, emotional, spiritual, mental. (I am not a "religious" person by any means, so far be it from me to convert anyone to using mantra's -- but I find it wonderful.)

Marylib

I agree, not new age, but old age. These things have been around, and effective for ... maybe forever.

I think mantra, and humming, and singing, and praying in tongues, and meditation and amygdala retraining, and psychoneuroimmunology and other techniques that take us out of the sympathetic nervous system and into the parasympathetic are all wonderful healing vehicles.

I think it's wonderful that there are so many vehicles to choose from, what works for one may not work for another, but there are always so many to choose from. A person can find what works uniquely for them.

 

[susan]

Add ons to Gupta

Hi Cort,

Talked with a natural health professional friend the other day treating lots of patients with CFS plus his very ill partner. Many on Gupta in his town, some better some not. He feels those not improving need an adjunct to help them along. These were his suggestions, maybe just doing one of the following.
* Resonant/coherent breathing training.
* Emwave biofeedback.
* Open focus attention training.
* Kundalini yoga meditation.....this one a bit too energetic for the very sick.
Aslo talked of Dr Benors strategies...WHEE

Susan

 

[Shellbell]

Neurofeedback/Amygdala training

Hello everyone!

This is all very interesting. I am 2 years out from the beginning of my illness. About 8 months ago, I met a woman who had been suffering herself for 4 years. She had to move back in with her parents in Colorado due to her illness. Both she and her mom were suffering and decided to try Neurofeedback training. The therapists they saw had lots of experience with treating CFS and other illnesses. Both had very disregulated amygdala's. After, beginning training, their symptoms began to resolve. A few months later they were pretty much back to 100%. It has been almost a year since they started and they are doing well. The daughter moved back in LA on her own and is working full-time.

I was invited to go there (I'm in SoCal) and get training done too. I did initially get better, enough to get me back to work 2 days a week after being on disability for 1 1/2 years. My cognitive abilites greatly improved and the rest of my symptoms were better, but did not completely resolve. In 4 months time, I relapsed, possibly due to stress of my job. My therapists investigated as to why I relapsed while their other patients were holding strong. The difference they found was the other patients they were treating or had been treated were on some form of nutritional therapy and detox program. My problem is I haven't been able to accomplish this successfully as I have a hard time with supplements making me feel worse and I have an extremely hard time detoxing, at this time never successfully.

My therapists suggested that after I am able to consume supplements and able to do some detox, I should do a brush up on to reset my amygdala. I tried to detox this summer with far less than good results. They believe that the trauma of my experience imbalanced my brainwaves again and put my amygdala on alert.

So, I have seen this work first hand. We are all so different though and what works for one, may not work for another. But I have to admit, I saw amazing results in the patients I did get to meet in their office. Some patients were struggling but somewhat functional and others, were very ill.

I thought I would put this experience out there in hopes that maybe someone has tried this and could possibly share their experience.

Shelly