• Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!
    Standby for updates from Cort. Discussion in this thread

A Fair Warning About Neurofeedback

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
Let me first off start by saying I have a love hate relationship with neurofeedback. I think it is an incredibly powerful tool and in many ways it has given me some great years. I have mild ME/CFS and my main symptoms over the years were cognitive.

Starting in 2017 I began doing ketamine infusions for depression. These kept me from being mildly suicidal, but they absolutely destroyed my sleep and also gave me horribly blunted affect. I did rTMS before the ketamine and this was a horrible experience.

I then began to look for what would be next. I had done 30 infusions over the course of 2 years and I was in a worse place than when I started. I began researching and found neurofeedback. I went to a local provider and we trained way too fast. We were doing 2 sessions a day for a few weeks and I had some side effects where I felt too activated. We then decided to just squish all of my brain waves which led to other issues like not being able to sit up I was so tired, but the side effects from feeling too activated largely went away.

I largely gave up on neurofeedback but returned to it a year later with a new provider. We were able to make some progress and I felt a good bit better, but we couldnt get rid of the brain fog. I then saw a different provider and we got rid of the brain fog completely. I didnt really have any bad side effects during these years other than just fatigue.

At this time my grades in school were really good, my sleep was very manageable, I began dating a girl, but I wasnt all the way to where I wanted to be. I also landed my dream job. I decided to get my own device and perfect things further. I began doing unconventional protocols that no one in their right mind would agree to do. I was increasing frontal alpha a ton to give myself more energy, but I gave myself pretty horrible ocd. I could still tolerate most protocols, but I went very, very slow because I was now a little gun shy. I had VNS implanted at this time as well.

Other than this, life was the best that it has been in years. I moved to Austin, Tx with my girlfriend, but this newfound ocd was really bugging me. I went back to train with a provider as my attempts to reverse what I did only gave me further side effects. This is where my life totally went to shit. This started a cycle of trying to fix things and having new things pop up. I think training with the VNS on played a huge role in the side effects that I experienced.

- I began to have extreme adrenaline surges.
- I began to be unable to eat.
- My sleep got worse.
- My legs shake all the time when going down stairs.
- I began to have panic attacks.
- I experienced a spinning sensation that would last for hours.


I recently decided to "squish" my brain waves again with a provider to hopefully make these things go away. I then attempted to wake myself up by adding frontal beta. A few days later when I got super, super tired again I became extremely derealized. Derealization is the scariest thing I have ever experienced. I feel like I am in a different world so to speak. I look at my father and know it is my father, but emotionally it just doesnt compute. I am 26 y/o and cant be alone. I have panic attacks because of this. I have had to take off work. I have had to break up with my girlfriend who I was determined to marry. I have had to move back home for right now. I live in terror.


I am hoping that I am able to reverse the squish and the derealization. Otherwise I do just not want to be alive anymore. My parents are pushing in-patient hospitalization because they think it will fix this some how.


I really had it all by some accounts: an amazing girlfriend, a great job and a cool new city. I now have none of those.
 

lenora

Senior Member
Messages
4,407
Hello @Jackb23. I'm sorry for your trouble. Perhaps your parents are right. I can say this because I have horrible anxiety/panic attacks and have spent time in a mental hospital. Despite your fears, it's not exactly the worst experience in the world.

True, you may not be comfortable with some of the other patients, may hate the food, but you'll be exposed to different doctors and medications (I still take vitamins, etc., but they never worked for the surge that causes insomnia, panic attacks and other problems). I did a lot of walking while I was in there because I couldn't sleep and had attacks of shingles. Not the best time of my life, but far from the worst.

Concentrate on what you can during this period and let your worries about the past and the future fall away.
Life changes....even from a young age. Give it a try. Yours, Lenora
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
I can heal right? Like if I just give it months will I be better? I am so worried that this is the end of my story. My existence isnt much. I lay in bed all day and hang on. I didnt do too much of the protocol that gave me horrible fatigue (two sessions). I only did one session of the one that gave me severe derealization.

I flicker back and forth between wanting to do more neurofeedback and just hanging on. I am just trapped in a horrible reality right now. Anything that will speed up healing neurologically would likely help. I just want my life back.

I am breaking my loved ones hearts. I have never been this low in my life.
 

YippeeKi YOW !!

Senior Member
Messages
15,865
Location
Second star to the right ...
I can heal right? Like if I just give it months will I be better?
You absolutely can. But its going to take time ad patience, and I'm deeply unsure about how a hospitalization will provide more than a lot of drugs that will fluck you badly and is the last thing your brain needs after the multiple assaults from neurofeedback. Resist that , let your brain settle and find homeostasis, and heal.
I am so worried that this is the end of my story.
It soooooo totally ISN'T. You did what you thought was right, your brain is functioning in a way that tells you that that was too much for it, it needs to be left the fluck alone while it goes about fixing itself.

It's going to be all right, so long as you resist what Im pretty sure will come next, the urging to take various anti-d's, anti-anxiety meds, mood stabilizers like lithium etc. This is all the medical community has to offer you. Be very, very careful.

I am just trapped in a horrible reality right now.
It's a pseudo-reality. It's your reality as shaped and orchestrated by a brain desperate for peace and healing. It'll gradually change into a more solid, real, reality.
Anything that will speed up healing neurologically would likely help. I just want my life back.
There is no drug that I know of that can do that, although there are a lot of drugs that might appear to do that, like anti-anxiety meds, with Ativan and Xanax being the absolute WORST in terms of their effects on your brain and neuro-transmitters. They're also the first thing Drs reach for in cases like yours.

Since I dont think that you did actual physical or structural damage to your brain with the neuro-feedback, but rather, forced an alteration in how it produces the chemicals that it uses to orchestrate the various functions that it oversees, I'll tediously repeat that I think that you need to just leave it alone to find it's oen way back.

There are probably a few things that you can do to help it along, among them, google B vitamin's functions in brain function. Vit D has been shown to be helpful in any number of ways, but needs to be taken with Vit MK-7 to redirect the calcium that D releases, into more appropriate places like bones and teeth, and away from where calcium usually settles when left on its own, arteries, joints, etc. I've found magnesium (I use magnesium glycinate, but there are multiple forms) to be extremely effective in calming things down (I used it in combo with Vit C and very small doses of melatonin) and since it's also used in nearly 400 enzyme conversions that we now of that are essential to the function of your body and to a degree your brain, it might be helpful during this transitional period of healing.

Lemme know if you need more info re the above, and hang in.

Things change
!!!!
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
Ok, I just dont want this to be permanent. I am living in hell. There are some reports of people online that did neuromodulation and are screwed for years and years.

What about HBOT?
 

JES

Senior Member
Messages
1,264
How long has it been since you last worsening? I'm not a doctor, but it sounds to me like the safest thing would be to not attempt any treatment in a while and let things settle at least for a while.

I have experience from both using VNS and a different form of brain stimulation called tDCS, which is constant low-current. VNS gave me almost remission in a couple of days, but then started getting weird effects from it. tDCS is supposedly very safe, but it messed up things and flared my POTS symptoms, causing sleeplessness etc.

So unfortunately from my experience many of us with ME/CFS symptoms at least are extremely sensitive to these things. I was never able to resolve these issues even though I attempted to use VNS and tDCS at different places and at different strengths. In the end it was just too risky to continue, so in my experience the treatment wasn't worth the risk and trying to "reverse" things with further modulation of mentioned treatments could risk leading to further deterioration.

HBOT, same thing. I did not tolerate it well at all. I felt better after one session, but then my body started fighting against it and I no longer could tolerate it at all. Unfortunately tolerance to even these type of relatively benign treatments like HBOT isn't great for some of us.

So yeah, not sure if this was of much help, but you should not also believe that damage is permanent. Our brains are quite adaptable even though we are not growing many new neurons as adults. Sometimes the best thing to do is just to wait it out and observe any improvements. It shouldn't be years either, I don't believe it takes that long for things to bounce back if they do. People have reached horrible withdrawal states from drugs like Xanax like @YippeeKi YOW !! mentioned, but most of them do improve over time. They are not stuck in the withdrawal state of day one forever.
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
How long did you do the treatments for that gave you issues? How long have you given it to heal? I am screwed if this doesn’t get better.

I am hopeful because I only did the one that gave me derealization for about 5 minutes. I did the one that gave me horrible fatigue for 40 minutes but this wasn’t acting at just one site but rather, 9 so it was less concentrated.
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
How long has it been since you last worsening? I'm not a doctor, but it sounds to me like the safest thing would be to not attempt any treatment in a while and let things settle at least for a while.

I have experience from both using VNS and a different form of brain stimulation called tDCS, which is constant low-current. VNS gave me almost remission in a couple of days, but then started getting weird effects from it. tDCS is supposedly very safe, but it messed up things and flared my POTS symptoms, causing sleeplessness etc.

So unfortunately from my experience many of us with ME/CFS symptoms at least are extremely sensitive to these things. I was never able to resolve these issues even though I attempted to use VNS and tDCS at different places and at different strengths. In the end it was just too risky to continue, so in my experience the treatment wasn't worth the risk and trying to "reverse" things with further modulation of mentioned treatments could risk leading to further deterioration.

HBOT, same thing. I did not tolerate it well at all. I felt better after one session, but then my body started fighting against it and I no longer could tolerate it at all. Unfortunately tolerance to even these type of relatively benign treatments like HBOT isn't great for some of us.

So yeah, not sure if this was of much help, but you should not also believe that damage is permanent. Our brains are quite adaptable even though we are not growing many new neurons as adults. Sometimes the best thing to do is just to wait it out and observe any improvements. It shouldn't be years either, I don't believe it takes that long for things to bounce back if they do. People have reached horrible withdrawal states from drugs like Xanax like @YippeeKi YOW !! mentioned, but most of them do improve over time. They are not stuck in the withdrawal state of day one forever.


How long did you do the treatments for that gave you issues? How long have you given it to heal? I am screwed if this doesn’t get better.

I am hopeful because I only did the one that gave me derealization for about 5 minutes. I did the one that gave me horrible fatigue for 40 minutes but this wasn’t acting at just one site but rather, 9 so it was less concentrated.
 

hapl808

Senior Member
Messages
1,406
How long has it been since you last worsening? I'm not a doctor, but it sounds to me like the safest thing would be to not attempt any treatment in a while and let things settle at least for a while.

I think this is very sound advice, but hard to really take in when you're doing horribly. All you can focus on is some 'treatment' to get better, yet many times I would've been better served by attempting to relax and stop any nonessential activities for a bit. Not that I did that, but I wish I had.
 

YippeeKi YOW !!

Senior Member
Messages
15,865
Location
Second star to the right ...
@Jackb23
Is there an echo in here?

I think it's pretty clear that the general consensus, including my own, is to just leave things alone and let your battered brain fnd its way back.

I know that's hard to do when you want to get better, like, NOW, but any further tampering, either with neuro-feedback or drugs (I'm definitely not implying that you're using any, it's just a warning about what you can expect if you take this to Drs for help), could pitch you into a place that you really, really, DON'T want to visit.

Hang in. THINGS CHANGE !!!!
 

JES

Senior Member
Messages
1,264
How long did you do the treatments for that gave you issues? How long have you given it to heal? I am screwed if this doesn’t get better.

I am hopeful because I only did the one that gave me derealization for about 5 minutes. I did the one that gave me horrible fatigue for 40 minutes but this wasn’t acting at just one site but rather, 9 so it was less concentrated.
This was several years ago, so hard to remember exactly, but I reckon it took a few weeks after the VNS experiments and a bit longer than that, closer to a month after tDCS for things to return back to "normal". I guess I was in a sense lucky because I learned from previous experiences that treatments that initially made me feel better can have the opposite effects later on, so I understood after few tDCS sessions that this path was no good for me.

I only experimented around a week with both of these treatments, so my situation is a bit different, but I was not left with anything that stuck permanently. The weird overstimulated feeling I got from tDCS did go fully away eventually. Meanwhile, I also recommend safer options like magnesium if you feel you have to try something right now to calm your mind. I understand it's not an easy situation.
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
@Jackb23
Is there an echo in here?

I think it's pretty clear that the general consensus, including my own, is to just leave things alone and let your battered brain fnd its way back.

I know that's hard to do when you want to get better, like, NOW, but any further tampering, either with neuro-feedback or drugs (I'm definitely not implying that you're using any, it's just a warning about what you can expect if you take this to Drs for help), could pitch you into a place that you really, really, DON'T want to visit.

Hang in. THINGS CHANGE !!!!
Sadly, I am already on Ativan and have been for months. It’s a low dose though (.5 mg).
 

Jackb23

Senior Member
Messages
263
Location
Columbus, Ohio
This was several years ago, so hard to remember exactly, but I reckon it took a few weeks after the VNS experiments and a bit longer than that, closer to a month after tDCS for things to return back to "normal". I guess I was in a sense lucky because I learned from previous experiences that treatments that initially made me feel better can have the opposite effects later on, so I understood after few tDCS sessions that this path was no good for me.

I only experimented around a week with both of these treatments, so my situation is a bit different, but I was not left with anything that stuck permanently. The weird overstimulated feeling I got from tDCS did go fully away eventually. Meanwhile, I also recommend safer options like magnesium if you feel you have to try something right now to calm your mind. I understand it's not an easy situation.
Like months, years? Sorry I’m really seeking assurance here. I just don’t want to have to live like this forever.