low energy neurofeedback system (LENS) Update after my first test

[muffin]

Both my husband and I had our brains mapped to see what our brain waves were doing. Both our brains were really messed up. I really can't explain LENS so bare with me here. I have been having ONE single electrode placed on different parts of my brain to affect the different brain waves (Alpha, Theta, Delta, etc). They usually use between 5 to 7 electrodes at once for non-sensitive people. My husband gets 5 electrodes. His tests came back as more normal for all brain waves. I can't explain what "normal" means but the color bars showed big changes and he felt better and I saw he felt better (more energy, less anxiety, etc).

I finally got through enough of the one electrode therapy to get tested and it showed that most of my brain waves were more balanced, but NOT my DELTA Wave brain waves. Delta waves works 24 hours a day and not just at night. Well my Delta waves were worse after the LENS treatment. Great. That sort of explains why I was sleeping out cold for 18 to sometimes 20 hours a day. So now we are using one electrode but at a much shorter period (a few seconds, the least amount of time).

Now the odd thing is that the huge black area that they believe represents a "viral signature" was GONE. No black area, just a nice blue color. They could not tell if that "viral signature" was an active or inactive infection. And they don't know what to say about the viral signature being gone. But here's the real sticker: I had been taking VALTREX (anti-viral for herpes, shingles, and what some think will kill off HHV-6) for two months while going through this LENS treatment. So now we don't know if the LENS treatment had any affect on that viral signature and/or if the Valtrex played into removing that big, scary black area. I'm betting it is the Valtrex.

During the last two months on Valtrex I have had minimal side-effects. For some periods, heavy nightsweats which makes me think that my body was trying to kill off an infection, as it did when I was first sick with CFIDS 16 years ago. Heavy night sweats. So, I am going to stay on the Valtrex for a good six months to a year or as long as my doctor will allow me to stay on it. He and I have fought over anti-virals for 10 years so I may have to keep fighting him to let me stay on this one med. I may win if I can convince him that that black viral signature is gone and it MAY be because of the Valtrex.

Anyone aware of Valtrex and info on it killing off HHV-6 or other viruses that get us? Does anyone know if Valtrex can pass the blood-brain barrier???

I had my tiny little therapy yesterday and slept most of today. So that's not good and that was the reason they dropped my time down even more because of sleeping/exhaustion after a therapy. Guess next week we stop and move to old neurofeedback. I can't allow my Delta waves to be messed up even more. That's what messes with my nighttime sleep and increases fatigue during the day.

Also, since I am the lab rat for CFIDS and brain wave LENS at this practice, the head doctor is working with Dr. Cheney on some sort of study and using my results. So I made certain that the woman who did my electrode placement was aware that I was also taking Valtrex and that this would go back to Dr. Cheney.

Thoughts? Ideas? Insights???? Help!







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[acer2000]

I am curious if you can share the name of the practitioner you are working with? I am sorry its not making you feel better. As I mentioned about my experience, I am not that surprised that someone with a serious medical illness like CFS would not respond the expected way to Neurofeedback. Also, what did you say your husband is trying to use it for? Does he have CFS also?

 

[muffin]

I will private message you with their name

I don't want to damage this organization since they are doing great work on kids with ADD, etc. and others with anxiety and depression. I was the lab rat and I was informed that I was the first CFIDS person so they didn't know how to proceed with me but that they would go slowly and keep checking on my progress.

You and others informed me that this was not a great idea for CFIDS people so I was well informed. But, I figured I would give it a shot and if the results showed no change or negative changes then I would stop ASAP.

If figures it would be the Delta Wave that would get knocked down further since that's my main problem. NO Delta Wave at all at night (two sleep studies) and too much of it during the day - hence the Neurologist's made up diagnosis of "Idiopathic Narcoleptic-Like Sleep Disorder". He made it up but he caught the drift of what was going on with me during the day. Major fugues that meant I was going down and out with several minutes of warning. But out I go and out I stay regardless of anything including stimulants or my husband trying to lift me up and out of the bed. The brain is stuck in that daytime Delta Wave pattern and so I really can not wake up. Of course, at night when the Delta Wave should be really working is the time that I have NONE. No Alpha Wave intrusion because there is no Delta Wave to intrude upon - as explained to me by my internist and not the neurologist who had no clue since he never really dealt with CFIDS brains.

I do believe in the brain wave stuff since it did help my husband and I heard many parents so very happy talking about how major a change this process had on their kids and their attention spans, etc. It does work but it doesn't seem to work on CFIDS - yet. They have to play/experiment with this to try to get to the right waves and that seems more than difficult and mostly impossible with this type of damaged brain.

I will give old fashioned neurofeedback a try since that gives ME some control. Have to keep trying or I don't get to complain - those are the "rules" (I made them up. No complaining if you aren't trying to get yourself fixed somehow, anyhow).

Thanks for the forewarnings on LENS for CFIDS. It does seem that if I have a week or two break from LENS my sleeping lessons. So let's hope that the Delta Wave funky stuff calms back down. Glad I listen to people on this forum - Cheers, M.

 

[xrayspex]

I did flexy system by ochs i think in calgary in 2000 3 months
had qeeg, didnt give me copy of results just discharge saying have fibro brain look, they asked me if did coke, my brain looked however coke user would, i dont do it
write me if similar pgm
have mixed feelings

 

[muffin]

I will find my QEEG and LENS testing results. Mostly pictures of the brain with different colors and not much of a write up. Well, they wrote up essentially what I told them!
I have discussed this with Acer and I have decided that I will not have anymore LENS or old fashioned Neurofeedback. This is day 5 after the last tiny electrode and I am still not awake. This is dangerous and I am terrified this will be permenant. I have slept most of the days and even last night after sleeping much of yesterday, I was still able to sleep 12 hours with a couple of wake-ups for pain/meds/dry mouth. Not good. So, for me, no more of this type of therapy. Just me, but the Delta Wave damage is the last thing that I needed - and I suspect the last thing that all other CFIDS people need as well.

This probably won't please them but I know they will understand that I can not have further damage to an already badly damaged brain. I have NO quality of life at all. Not from the bed for 18 hours. Back when I was first sick it was a 22 hour a day sleep for months on end. I can not go back to that. Just can't.

 

[xrayspex]

eeg neurofeedback at myosymmetries:
at the time I thought it was helpful but it coincided with me taking a 3 mo sabbatical in calgary so was good for a lot of reasons to get out of town etc

In retrospect I got more hypervigilant about noise sensitivity and insomnia during that time, also started needing reading glasses for first time and eye troubs since sorta, nothing def correlated though. I also did a dif kind of biofeedback for awhile once back in states by a less skilled practitioner and that complicates results.

I liked how the calgary pgm also had physio (as they say in canada) and cool approach to PT based on some biofeedback machine, developed by donaldson the director of that pgm

I found a "power of now" meditation group to supplement my pgm and few other outside things and was set for a retreat

 

[Resting]

Thank you for this post. I was just referred for LENS by my neurologist. He said it can be useful in brain injury. I got concerned when I saw that the LENS practitioners don't have any kind of medical degrees. Although the one I was recommended to has been doing it for many years, I still think it odd that someone can mess with your brain like that without any medical training.

The one I was referred to has a light therapy too. Anyone know if that is effective? Although he developed the light therapy system that he uses I am sure there are similar ones out there.

Thanks again for the post. Your experience further proved that this is not the right choice for me (and it is all out of pocket to boot).

Do you think it is worth doing the brain mapping only since I am working with a neurologist as well?

 

[Mr. Cat]

I had about 10 Lens sessions this spring and summer after hearing about a colleague who was cured of fatigue through it. I felt very wired and energetic for a couple of days after some of the sessions, and with others I didn't feel much at all. Then I had a more serious relapse of fatigue a couple of months ago, and the LENS didn't seem to have much of an effect. I have since stopped, but may try it again someday. LENS researchers have said that though LENS can be useful in treating fatigue caused by brain trauma, it had proved ineffective long-term in treating fatigue caused by viruses.