A Fair Warning About Neurofeedback

[lenora]

Hi Jack.....There are medications apart from Ativan that can help. True, you may have to have doses adjusted, but please don't do that by yourself. If your body needs help; it needs help and please be honest with any doctor you go to.

I don't like being on medication, but it sure beats wanting to kill myself every minute of each day. Give the body a chance to adjust. It's your life. Yours, Lenora

 

[lugaresxcomunes]

Sorry to hear that.

I also need to warn about Neurofeedback and bad professionals.
I was trained in a place called Neurocenter in Barcelona. I didn't new I had ME. I went for the ADHD, depression, chronic pain, brain fog, etc. My Brain Map showed I had a metabolic illness or some health problem. They put me on a SRM protocol even thought my SMR was ok. It gave me severe side effects. I felt aggressive even thought I am never like that. I was irritated, my pain was worst than ever, I even had suicidal thoughts. I found a paper that says that SMR can give side effects https://www.researchgate.net/public...Randomized_Sham-Controlled_Double_Blind_Study
The Center didn't paid much attention to it when I told them, just told me it was normal to get worst before getting better and that it was my "trauma leaving my body". One day I even left the place with a fever and other I started having rashes all over my face. They offered me to book sessions with other professionals in the Center to solve it. And even offered me psylocibin therapy, which is illegal in Spain. I spend 1800 euros in just getting worst.
One month after I developed ME at 100%. I started having several crashes, couldn't be awake all day, started to need stimulants to wake me up, etc. Then I was so bad I realized I had Me.
Neurofeedback left me severally deregulated. I am really sensitive and I suffer from side effects of more things and sadly Neurofeedback is full of scammers and unprofessionals just wanting to make money. Ive found out that the people training me were not even trained at NF or one was not even a Psychologist.
If you do Neurofeedback, please be really careful and research really well. Work with someone that understand what ME is and that is aware that we are really sensitive patients.

 

[Jackb23]

Hey just an update. The derealization is going away and I am much more comfortable than when I wrote this. I have no doubt this symptom will go away. I hope the fatigue goes back to my me/cfs baseline as I was able to work, date, etc.. Fortunately, I dont have any brainfog, just this is horrible, horrible fatigue where I struggle to sit up straight and need to sleep 10 hours a day. This is much better than 2 months ago when I would literally lay on the floor when my girlfriend wanted to talk to me in a different room. My ME/CFS always presented itself as cognitive symptoms but I was not very limited in what I could do physically other than my motivation to move/do so. I could amble about and even exercise although this would make the brain fog much worse, give me spotty vision, etc.


I have two more months off work so hoping that is enough to regain some stamina to a point where I can perform. I have until September before I need to be in the office again. I would say the fatigue is 20% better than when this all went down but this really sucks. I am probably at 40% where I was before I did these last few sessions. I am trying to push myself physically to get a better sense of how things are trending. If I sleep all day I will have no idea.

 

[Jackb23]

Sorry to hear that.

I also need to warn about Neurofeedback and bad professionals.
I was trained in a place called Neurocenter in Barcelona. I didn't new I had ME. I went for the ADHD, depression, chronic pain, brain fog, etc. My Brain Map showed I had a metabolic illness or some health problem. They put me on a SRM protocol even thought my SMR was ok. It gave me severe side effects. I felt aggressive even thought I am never like that. I was irritated, my pain was worst than ever, I even had suicidal thoughts. I found a paper that says that SMR can give side effects https://www.researchgate.net/public...Randomized_Sham-Controlled_Double_Blind_Study
The Center didn't paid much attention to it when I told them, just told me it was normal to get worst before getting better and that it was my "trauma leaving my body". One day I even left the place with a fever and other I started having rashes all over my face. They offered me to book sessions with other professionals in the Center to solve it. And even offered me psylocibin therapy, which is illegal in Spain. I spend 1800 euros in just getting worst.
One month after I developed ME at 100%. I started having several crashes, couldn't be awake all day, started to need stimulants to wake me up, etc. Then I was so bad I realized I had Me.
Neurofeedback left me severally deregulated. I am really sensitive and I suffer from side effects of more things and sadly Neurofeedback is full of scammers and unprofessionals just wanting to make money. Ive found out that the people training me were not even trained at NF or one was not even a Psychologist.
If you do Neurofeedback, please be really careful and research really well. Work with someone that understand what ME is and that is aware that we are really sensitive patients.

I actually read your story on reddit when this all went down. Have you joined the facebook group for neurofeedback side effects? How many sessions did you do of SMR? Were these long sessions?

 

[lugaresxcomunes]

I actually read your story on reddit when this all went down. Have you joined the facebook group for neurofeedback side effects? How many sessions did you do of SMR? Were these long sessions?

Yes, this experience was a nightmare and I am still shocked about it. The Center also denied everything even thought I have tell them I was getting worst in every session. I am in all groups because I was trying to understand what was happening to me.

I did 20 sessions. Started in October, finished in january. It was 30/40 minutes. It was SMR (Cz Reinforcing SMR Inhibit 20 to 30hz) and most sessions just 10 minutes of Pz reinforcing 9 to 12. Inhibit 20 to 30hz.

 

[Jackb23]

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.

Im just really worried I went from mild to moderate severity permanently, unfortunately. The only thing that I can do is wait. Hoping this isnt the case and that I continue to get back to my previous "health". Last week I pushed myself to workout everyday and walk 5 miles a day. By the end of the week I felt sick. Too tired to do basic functions. Forgot how bad this can get as I havent felt like this since I first came down with mono in 2015. After that, I mostly just had cognitive issues and havent been limited physically so I would say that is my ME/CFS baseline.

I am definitely healing, just may take 6-12 more months unfortunately (If I am 30% better than when I first did the treatment and it has been 3.5 months). I need to be careful not to run with the wind when I get better. I just get so excited and jump at the opportunity then I end up much worse.

Edit: What caused your functioning to decline over the years?

 

[hapl808]

Last week I pushed myself to workout everyday and walk 5 miles a day. By the end of the week I felt sick. Too tired to do basic functions.

Edit: What caused your functioning to decline over the years?

Generally pushing through physically challenging things, mentally taxing, illnesses, etc. I was usually encouraged by doctors to push through injuries and such, and each one of those 'mind over matter' attempts led to declines. I usually recovered back to my baseline - until I had those declines after age 40. I did not (as of yet) recover from any of those.

 

[Jackb23]

Generally pushing through physically challenging things, mentally taxing, illnesses, etc. I was usually encouraged by doctors to push through injuries and such, and each one of those 'mind over matter' attempts led to declines. I usually recovered back to my baseline - until I had those declines after age 40. I did not (as of yet) recover from any of those.

We got this!

 

[Jackb23]

I have achieved 2-3 remissions during my time with ME/CFS and I am determined to achieve a third, if not come close again. Most of my ME/CFS journey has been spent operating in full capacity other than brain fog which has been more severe at particular times. I havent had these physical symptoms since I came down with mono initially and even these went away. I am hoping the bullshit neurofeedback protocol that I did with the doctor twice eventually goes away and it should but it might take a bit. I did just 5 minutes of the protocol that gave me horrible derealization for 10 weeks, I did 40 minutes of the one that caused me to be unable to sit up straight.


What has helped me in the past:
- 200 mg zoloft, 450 wellbutrin and 35 mg of adderall led me to have a pretty decent life where I was unconstrained physically but I still had brainfog
- 450 wellbutrin + intensive meditation helped me a ton and led to my first remission (but then got pneumonia)
- Strange Neurofeedback protocols that I did on myself over the summer gave me remission and fixed my sleep, brain fog, depression, etc.. It unfortunately increased by intrusive thoughts but other than this I was okay.

Sadly, I did rTMS after I started taking 200 mg zoloft. This led me to not be able to tolerate it and fucked up my sleep. I also couldnt tolerate enough wellbutrin to the point where I could focus enough to meditate. This didnt go away. I know doctors say that it has no side effects, but if you get one, and people do, you are screwed unless you find some kind of intervention to correct this. Time isnt going to heal 36+ sessions intensive changing of neural-circuitry.

I did find some neurofeedback protocols that helped ameliorate my side effects down the line (not completely), but this is after 4+ years of searching and 30 god awful ketamine infusions.

So how I think I can get out of this:
I can meditate now, but it makes my ocd worse. I become way too hyperaware of everything and its just shitty. If I can find a way to do breath-work without having this happen then I will be okay and I have an idea on how to do this. I tried to take zoloft again about 3 months ago before I derealized myself and the results were mixed. The first day was a lot (way too much activation), but after that it was honestly a great week and I felt like doing things. It did however fuck up my sleep a bit. If I can find an SSRI that doesnt screw up my sleep then I will be golden.

The reason why I think this will work so well is because over the summer I put a nice blob of alpha atop my frontal cortex. This is what caused horrible ocd within the week. Unfortunately, this shit isnt going to go away because I did a ton of it, and if it does then its going to take a few years. This frontal alpha signature is predictive of OCD SSRI response in many studies. SSRIs decrease anterior alpha and increase beta.

 

[lenora]

I've noticed that ANY change in my meds results in broken (at the very least) if not insomniac nights. Taking it beyond that I have to expect this for a minimum of 2 weeks. I have never found a way around it.

Right now I want to drop one OTC med that I needed for a cold, followed by sinusitis earlier this year. Perhaps I'm just too hyper-aware of taking meds that I personally feel I don't need at the moment.

Good luck to anyone trying to get on or off meds. I have found that it will work in the end (getting off them or going on), but it's going to take time and patience. Yours, Lenora