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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Neurofeedback

Discussion in 'Alternative Therapies' started by Nielk, Oct 28, 2009.

  1. muffin

    muffin Senior Member

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    I have now had about ten sessions using only one electrode while my husband has had ten sessions with 5 electrodes. Our brains are damaged in very, very different ways. His brain had the back part of the brain working in the middle part and he had anxiety issues that came on after a virus. He was also exhausted all the time and laid on the couch day and night. I can report that for my husband, LENS has made a huge impact on his anxiety, personality and energy. He was re-tested and the test showed that there was indeed improvement. As for me, I seem to not be able to write or even ramble anymore. I don't know if this is a very dangerous and negative situation and I should stop the treatments NOW or if my brain is trying to adjust to the changes especially given that I have been horribly sick with CFIDS for 16 years now and was always a hyper person pre-CFIDS. I also must report that there have been periods where I think my memory has actually improved just a bit. So it seems to be a mixed bag for me at this point. I will be re-tested after two more sessions and will see if there are any changes either positive or negative or probably neutral.

    i admit I am quite nervous about this inability to write/ramble. I don't write the emails that I used to write and I haven't been on this forum writing but just reading because my brain is just not working enough to write coherently. I think I will give it the two more sessions, get re-tested and then make the decision to keep going or stop. I hope and pray that this change of not being able to write is not a permanent thing.
  2. Rrrr

    Rrrr Senior Member

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    i, too, had a mixed bag experience with LENS. it made me hyper but that was better than bedridden! and it helped my anxiety and mood (i even started joking again). but it also seemed to make my brain weird, in that i was spilling things, and trouble thinking, etc. then i tried a homeopathic remedy that made me super sick, and i lost my brain in a whole new way at a whole new deeper level for months and months. i got worried that the LENS was what did that, even tho the homeopathic remedy clearly was what made me sicker. i worried that the super bad brain came from the LENS work. i stopped it.

    it took about 3 months for my brain to come back. thank god it did.

    by the way, all the LENS treatments we did were super super low level. often just the "hum" dose.

    i want to do LENS again, but i fear too much that i could damage my brain. and i fear about the electromagnetic field i'm putting in my brain, and if that will cause me to get electromagnetic field sensitivities.

    i hope your ability to write and ramble comes back!!!!!!!

    p.s. just the "testing" is a form of treatment, according to my LENS practioner, who is an MD.

    warmly
    rrrr
  3. muffin

    muffin Senior Member

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    Rrrr: Thanks for the response to LENS. Just do not know what to do about this therapy. Very dangerous to mess with a very badly damaged brain. But, if you think you can fix it, you give it a go. I really am just so tired of this damn disease and all its weird problems. Glad your brain came back. That is a very scary situation to say the least. hugs - m
  4. Rrrr

    Rrrr Senior Member

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    yes, i get it. i really do.
  5. acer2000

    acer2000 Senior Member

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    Sorry to hear the neurofeedback caused a problem. What does your practitioner have to say about the negative effect? I'm curious...
  6. jeffrez

    jeffrez Senior Member

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    "XYZ really hurt me. I think I'll give it another chance/keep going."

    That's how people really end up harmed from neurofeedback. Rrrr's brain "coming back" after 3 months is very lucky. Sometimes it never comes back. Then when you do more NF, you are doing it from that "new" place, and when something goes wrong there, you just keep spiraling deeper and deeper into dysfunction, with no one really knowing enough to bring you back.

    It's also quite possible that "naive" brain in State A and "neurofeedback trained" brain in State A are not the same brain, even though they both are in "State A." The NF brain might now be "resistant" to neurofeedback in the same way that people develop drug resistance, and that it can't be trained back to "normal." And that's not even to mention "normal" brain in State A, and NF brain that has gone past State A to State B, and then trying to fix that, to State C, then D, E, F or even Q. So it's all around a very risky proposition, imho, especially with the CFS brain, which is different from the "normal" brain, and even the autistic brain.

    None of the NF practitioners really understand the brain or what it's doing - no one really does - and none of them I have ever heard of know how to fix things when they really go wrong. Most of the time the answer is "do more of the thing that harmed you," instead of the common sense advice to STOP doing what harmed you. That's because they don't really understand the brain, they just know about their limited "protocols." NF is very risky, especially for the CFS brain, in my opinion.
  7. muffin

    muffin Senior Member

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    It's not so clear for me that LENS is doing all damage to my brain. I do seem to be sleeping better at night and not getting up at 2am until 7am. So that's quite good after so many years. But, I also sleep far more now during the day and can not wake up until about 6pm. My drive and agitated energy (from not getting done what needed to be done so I freak and move it out) is gone. The brain people have been working on the slow waves around my brain so I guess that would explain the better night's sleep and the heavy sleeping during the day. I am to be tested in a week and will see what comes from that. After the test and my decision as to continue or stop, they then move to the higher (more alert/awake) brain waves to get them raised/balanced. So it may well be that my brain is re-learning or re-balancing and this is the effect.

    I am so desperate that I will do things that I normally would not do. However, IF the test shows no positive change then I stop. If it shows a negative change then I stop. If it shows that those targetted brain waves have responded positively, then I continue to the higher brain waves (those that may give me more energy, or at least help me to stay awake during the day).

    Mixed bag for me right now. So i shall see and then make the decision to keep going or stop. But, my husband is doing GREAT with LENS and the changes to his anxiety and clarity of thinking, etc. has been amazing. His test showed postive results but that just validated what HE felt and what I and my family saw on a daily basis - great changes for the better. LENS works, but I do think it works on certain types of brain issues. I also hope it works on my very badly damaged brain as well. It might just take far longer to see positive results with a long-term damaged brain --- and one that had a huge black area in the midsection of the brain which indicates a virus (not know if it is active or inactive) and another smaller black area in the left frontal lobe (which the brain folks would not even guess what that black area was).

    But yes Mr. Kite, all of your points are very valid and I am paying attention to them. Thank you for your response, I needed to be reminded of the possible unfixable damage that could result from an untried/untrue procedure on the brain - an area of the body we understand the least about.
  8. leaves

    leaves Senior Member

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    Any new experiences/ comments?
  9. Mr. Cat

    Mr. Cat Senior Member

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    I had about 10 sessions of LENS treatment in the spring of 2010. About a day after the earlier ones, I felt very wired and in a good mood. I also had some treatment with the Neurofield X1000, which was even more effective in boosting mood. The effects became less notable in the later sessions, however, and certainly weren't permanent. I was told by the practitioner, however, that Dr. Ochs found that LENS was not very effective for fatigue conditions with a pathogenic (virus) origin, which CFS most likely is.
    L'engle likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Bumping this thread
  11. jeffrez

    jeffrez Senior Member

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    Glad you bumped this thread, Heaps. While I can't strongly disagree with anything I've said here, after going back and reading it a couple of years later, I would just have amend my earlier comments to say that yes, NF can be dangerous, maybe moreso with ME/CFS patients, but I believe that my experiences were to some degree anomalous b/c of the degree of dsyfunction I initially had. Several very experienced practitioners, including P. Van Deusen and people he has trained, and a PhD neuropsych who runs an inpatient clinic for brain damaged individuals and does QEEG and evaluated mine, said they had never seen the amount of occiptal and temporal dysregulation as they saw in my scans, with excessively high "frequency comodulation" (fancy term for coherence) in temporal regions, near total lack of low frequency occipitally, etc. So my starting point itself was unusual.

    I stand by what I said regarding the Othmers, however - imho I think they are largely unethical. My problems were also compounded by having the NF community of practitioners basically throw me under the bus when I started to become vocal about what the Othmers' protocol did. So that led to a lot of floundering trying different protocols, etc. many of which were just shots in the dark, some of which made things temporarily worse, etc. Naturally that all leads to a lot of resentment, also.

    The moral then, as with most anything, is be careful, and go slowly. Most of my earlier probs have resolved, although some never did - yet - but the more I have learned in the past few years trying to fix it, the more convinced I am that it is possible to fix with the right approach. Like I think I said, the Van Deusen method is probably a very relatively safe place to start. I think he really has a good grip on what's going on in the brain as a whole, and his approach seems to be one of the more solid ones in terms both of theoretical background justifying it and positive results. Personally, I would stay away from anyone who touts the Othmers, but that's a judgment call everyone needs to make for him/herself after doing the due diligence.
    heapsreal likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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