The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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LED red intranasal light therapy

Discussion in 'Alternative Therapies' started by Lou, Jul 12, 2013.

  1. BenFromNZ

    BenFromNZ

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    Hi guys,

    Just an FYI for any reading this thread on my experience with the Vielight Neuro Alpha.

    Unfortunately for me the device knocked me around for at least a week each time I used it (sometimes the negative affects lingered for longer). At first I tried it for 10 minutes as I figured the full 20 might be too much. Then I stepped down to 5 mins, then 2, then 30 seconds, 10 seconds, and finally - and quite shocking to me - even only 5 secs knocked me around. Bear in mind that I used the whole 6 month trial with only about 5 attempts as I waited in between each use.

    I never imagined the device could have such an affect for only 5 secs of usage - obviously these devices do something.
    If anyone knows what such a strong reaction could indicate about whats going on with my health - please chime in.

    I have read through some of this thread earlier before buying the Vielight but I'm too tired to read through on whether people have discussed these things recently.

    Cheers
     
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  2. perchance dreamer

    perchance dreamer Senior Member

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    I have only a minute to write right now, but @BenFromNZ, do you mean that in the 6 months, you only used the Alpha 5 times because of the trouble you've had?

    I'd suggest calling Vielight and talking to them about it. I've found them very helpful.

    Another thing I'd suggest is to use the Alpha nasal device in the right nostril instead of the left, if you aren't already. Vielight would probably say you can use either nostril. However, at my biofeedback clinic, they always have clients use the right nostril because they have more success with it.

    When I called Vielight a while back with some questions, I asked if the Gamma nasal unit could be used by itself without the headset. The representative said yes. It has a weaker effect than using the nasal device with the headset, but you can do that. I also asked if you used the Gamma nasal device alone without the headset if it would be the same as the Vielight 810 (nasal device only), and she said it would be stronger than that. The nasal devices for the 810, Alpha, and Gamma are different from each other.

    I assume you could use the Alpha nasal device by itself as you can the Gamma, but ask Vielight about it.
     
  3. Chris

    Chris Senior Member

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    @BenFromNZ--as you suggest, this makes no kind of sense. If pushed I might suggest that you have an extraordinary neurological response to the 10Hz pulse rate of the Alpha--Lew Lim deliberately avoids using pulsed light at visible frequencies--the V633 and V655 are both continuous wave. Having both 10hz and 40hz available on my MED-X units, which combine 633 and 870 diodes, I can confirm that 10hz produces a very visible flicker that some might find disturbing--or, as Lew fears, might provoke seizures in a few. 40hz produces a very rapid barely visible flicker. So despite the fact that the 810nm light of the Alpha is well into what for most of us is invisible light, some of your neurons may be reacting violently to the flicker. That is the best I can do! --though it seems unlikely to me.

    I do find it very difficult to separate out the effects of these things against the background noise of a constantly shifting state produced by general ME stuff.
     
  4. Chris

    Chris Senior Member

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    I checked too, and it is fine to use the Alpha intranasal without the headset--have done it several times. I believe the intranasal units for the Alpha and Gamma are the same, and that the circuitry controlling the pulse rate is all contained in the control unit; certainly neither the nasal unit nor the headset carries an identification of "Alpha" or "Gamma", as the control unit does, and they offer only one version of the nasal "applicator" on their site, presumably because it will work with either control unit. Please correct me if I am wrong!

    @perchance dreamer , thanks for the note on right or left--interesting. I usually switch sides about half-way through. Do I take it that you are part of a group or clinic using these units--would love to hear some feedback from more users!
     
  5. perchance dreamer

    perchance dreamer Senior Member

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    @Chris, the VL rep. told me that the Gamma nasal device is different from the 810 and that using the Gamma nasal device by itself has a stronger effect than the standalone 810 device or the Alpha nasal device by itself. I think I'm mistaken that the nasal devices for the 3 products are different from each other. Probably, as you said, the difference is in the control units driving the devices. Still, the effect of the nasal units is different because of the pulse rates are different for these devices.

    My biofeedback clinic has used the VL for clients since VL first came out, so they have a lot of experience. I used the 810, Alpha, and Gamma devices at the clinic before figuring out that Gamma works best for me. My biofeedback therapist is the one who told me to use the right nostril only. I haven't been back to the clinic in a long time since I bought the Gamma for home use.

    I don't know of any online forum for the VL products other than their forum on the VL site, but I don't find it at all useful. I haven't looked at it in quite a while, though.

    @BenFromNZ, are there biofeedback clinics where you live? Since your brain seems so disturbed from the Alpha, it might be interesting to see pre- and post-EEGs if you did an Alpha session at the clinic. Of course, with the experiences you've had so far with it, you might not want to try it again right now.

    Even if you didn't use the Alpha during a biofeedback session, it would be interesting to see your EEG and which of your brainwaves are the most prominent.

    (Excuse me if my post is totally incoherent. The cleaners are coming today, and I'm playing Adele really loud to help get my rear in gear. I always have to clean up before the cleaners come.)
     
  6. Chris

    Chris Senior Member

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    @perchance dreamer--Adele, as in Die Fledermaus?? I would love to hear something about your experiences comparing the Alpha and Gamma versions--I am experimenting a bit using my MED-X units at 40Hz, and beginning to think I made a mistake in choosing the Alpha...
     
  7. Chris

    Chris Senior Member

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    I have been in touch again with Vielight, and learned that they now have a monthly "newsletter" beginning with this month, found under the tab "media" on their website. But I did say that what I/we would really like would be something more like the "Inventor's notes" for the 810 and original Neuro.
     
  8. BenFromNZ

    BenFromNZ

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    Sorry guys I'm a bit too tired at the moment to answer everybody - I'll see how things go.

    I've had to send the alpha back though as it is coming up to the end of the 6 month trial so i can't try just using the nasal device. I only used the device about 5 times in the 6 months, but I could have done it a bit more than that.
    I don't think my issues were related to normal shifts in health status that the illness can bring as I'm pretty stable and only had the set backs the following day after every time I used the device. I expected some sceptism to it being the device though, but felt it better to list my experience for others considerations, as this illness can bring unexpected effects of treatments in many people.



    I've actually been thinking about doing neuro feedback and have just been in contact with an experienced clinician near me. With no personal experience in it I'd be interested to know if it is very mentally draining to do? I'm pretty mental exhausted at the moment so I'm wondering if I would actually need to be healthier before I could start having sessions. And is it something you have to do mental exercise with after the session at home - or is there an effect even just doing the neurofeedback at the appointment?
     
  9. perchance dreamer

    perchance dreamer Senior Member

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    @BenFromNZ, there are many types of neurofeedback, but none require that you do exercises at home. The effect is from the session in the clinic.

    Biofeedback sessions often require home exercises, for example, learned relaxation exercises at certain times of day in order to bring down muscle tension. But this is not the case with neurofeedback.

    You might just have to try neurofeedback sessions to see if it's mentally draining for you. That's never been the case for me although I've occasionally gotten insomnia the night of a session or felt tired temporarily from it. At my clinic you can pay for just one session at a time.

    Also, at my clinic, the first session for a new patient is usually an initial patient intake in which the therapist gathers information from you and evaluates the best route to take. You may or may not have an actual neurofeedback session the first time. Your therapist may attach electrodes and do an EEG to look at your brainwave patterns to help figure out the best course.

    I've found neurofeedback interesting and useful through the years although I've only done sessions off and on. It's expensive, but has been worth it for me.
     
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  10. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @Chris, sorry to be so late getting back to you about my experiences with the Alpha and the Gamma.

    First, let me tell you a bit about myself that probably affected my experiences. I've had quite a few falls in my life and have hit my head on the floor. From a QEEG, the therapist was able to tell that I had brain injury, most likely from these falls. I did sessions with the LORETA at my clinic, and a retest showed that the brain injury no longer showed up although I still had brain fog even after a number of sessions.

    I did the Vielight Alpha only once because it made my brain fog much worse, and I felt just terrible. It may have slowed my brain down too much. However, the clinic has had many patients who benefit from the Alpha, so I wanted to try it.

    The Gamma has really helped me although my sleep has been crappy for months from other things, and I think long-term sleep deprivation has lessened the beneficial effects.

    The first time I tried the Gamma at the clinic, I felt fantastic afterward: great mood and mental function. So I decided to buy one for home use.

    Even with my sleep deprivation, I've noticed these benefits:

    - Better verbal processing. I've always had a problem when I try to understand what someone's explaining. For example, when we got solar panels at our house, we had to have some minor electrical work done first, and although the electrician tried to convey to me a simple idea about the work he needed to do, I just didn't get it well enough to explain it to my husband when he got home. If I had read it, I would have gotten it instantly. The Gamma sessions have helped me understand people better when they explain things to me verbally. Wish I had had it when I was in college!

    - Much better puzzle-solving ability. I've really improved at my crossword and word puzzles. I don't know why figuring out answers and writing them in those little boxes is so satisfying, but I love puzzles.

    - Much less worrying. I didn't expect this effect at all, but I'm no longer a worry wart the way I've been my entire life. In pre- and post-EEGs at the clinic, the brainwave pattern associated with fight-or-flight and an overactive nervous system was much more normal after a Gamma session.

    So these have been great benefits for me, but on the night of a Gamma session, I have to take an extra supplement so it doesn't give me sleep problems. I take 100MG of phenibut at night when I use the Gamma.

    Hope that helps! Have to say I'm a bit envious of you living in beautiful Victoria.
     
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  11. Chris

    Chris Senior Member

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    @perchancedreamer--many thanks for all this info--much appreciated! I do have one more question, though--does the Gamma seem to have had any effect on your overall energy/exercise capacity/PEM? When I mention the possibiliy of making just the control unit for the Gamma available, the only response I get from Vielight is -maybe some time in the future, but not now. Same goes to my suggestion that they might make available just the intranasal unit of the Gamma, with its own control/power supply. I am seriously considering returning the Alpha--I don't like doing that kind of thing, but it does not seem to be helping, though I am not experiencing the strongly negative effects you report. Glad the Gamma is helping you, anyway--have you tried using it in the morning, or early afternoon?

    Don't know where you live, but Victoria is rather attractive--except for the four months without the sun which we seem to be moving towards already... not too much real rain, but dreariness, drizzle, ...I want more sun!
     
  12. perchance dreamer

    perchance dreamer Senior Member

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    @Chris, the Gamma gives me more stamina on the days I use it, but not more energy. It's just easier for me to power through a day when I use it. I'm fortunate enough not to have PEM and can exercise as long as I'm careful of the type and the time of day.

    I always use it in the morning because of sleep interference, but others may be able to use it in the afternoon. I have an exceedingly sensitive system, even in patients in our population.

    I live in hot, sunny, Austin, TX. The family I'm close to lives in Seattle, and I used to live in Gig Harbor, WA, on the Kitsap Peninsula, not far from Seattle.

    My sister calls the time coming up in the PNW The Big Dark. She uses light boxes in her house, which really helps.

    I used to visit Victoria and once spent several days in Ladysmith. I love Canada and want to move there, but it would make my husband and our elderly cat very unhappy if we moved. They both hate cold weather and define cold as less than 70 degrees F.
     
  13. Chris

    Chris Senior Member

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    @perchancedreamer; this is a PS; first, the intranasal unit for the "regular" 810 is quite different from the intranasal unit used for the Neuro, both Alpha and Gamma as I understand it. Second, another question since you have talked to others using the Neuros; do you know of others with ME who have responded much better to the Gamma than to the Alpha, as you have done? In other words, any evidence that there is something specific to ME/CFS that causes such a differentiating response? The tiny first trial on Alzheimer's with the original (Alpha type) Neuro used a once or twice a week schedule; the most recent poster paper of one patient with Alzheimer's used the Gamma at a rate of five sessions a week for 17 weeks--an entirely different schedule. I have not managed to get comment on this from VL so far. Any thoughts? How often do you use it?

    Many thanks again for any light you can throw on these issues!
     
  14. BenFromNZ

    BenFromNZ

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    @perchance dreamer Thank you, that was very helpful information and makes me think neurofeedback may be more suitable for me than I thought.

    It's interesting that you had such a bad reaction to the Alpha (as did I) but not the Gamma. Maybe I should give that a try sometime.
     
  15. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @Chris, I don't actually know other people using the Gamma. However, some months ago when I started trying Vielight products at my biofeedback clinic, the therapists told me they mostly use the Alpha at their clinic. I don't know if that's changed or not.

    Based on what they told me, it's hard to know who will respond better to a particular VL product. I think it's more complicated than to what degree the product affects brain speed.

    For example, one of my therapists is married to a visual artist. His dominant day-time brainwaves are alpha rather than beta. Beta is dominant for most healthy adults with "normal" brains. I would have thought he would do better with the Gamma, since *part* of what it does is to speed up the brain, but he does much better with the Alpha.

    His case is interesting because he was in a bad car wreck and suffered some bad cognitive deficits afterward. Luckily, his wife and daughter are both neurofeedback experts, so they had him do all kinds of things in the clinic.

    What helps him the most at home is to use the Alpha every other day in the morning, and the 810 every other day. He says it's like his brain turns on after using them.

    @BenFromNZ, it's great you have an appt. at the neurofeedback clinic. Maybe they have Vielight products you can try. Let us know how your appt. goes.

    This morning I wanted to use the Gamma, but it is malfunctioning. It was fully charged, but turned off after a few seconds. I'll call Vielight when they open to let them know about the problem. They seem to be a really good company, so I don't anticipate any problem.

    Damn! I could have really used it today. It's my husband's birthday, and I have a great dinner planned. Shopping and doing all that cooking will take some stamina.

    Oh, I forgot to add that I use the Gamma only every 5 or 6 days. More frequent usage screws with my sleep. I still have to take an extra supplement for sleep on the days I use it.
     
  16. perchance dreamer

    perchance dreamer Senior Member

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    I just called Vielight about the Gamma malfunction. They will ship me a new controller Mon., so I'll probably get it Thurs. Then I'll ship them back the old one with a label they will provide so I don't have to pay shipping.

    The representative said some of the older controllers had an overheating problem. That has been fixed in the new ones.
     
  17. Chris

    Chris Senior Member

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    @perchance dreamer , sorry to hear about your problems with the Gamma, though good to hear that VL is responding well. And thanks for the added info that you only use it every 5 or 6 days--I was developing a mad hope that there was some magic in the Gamman that allowed for daily or almost daily use as with the single AD subject of their latest case study--fat chance for us with ME, it would seem! I do wish that they had designed a controller that allowed a switch between 10Hz and 40Hz--considering that I can enter any frequency I choose into my MED-X units, it should not have been beyond their abilities.
     
  18. garcia

    garcia Aristocrat Extraordinaire

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    Good point! I suspect the profit motive is strongly at play here sadly. BTW which MED-X unit do you use Chris?
     
  19. Chris

    Chris Senior Member

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    @garcia; I use the LED capsules, not the expensive laser probe.
     
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  20. Cheesus

    Cheesus Senior Member

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    I suspect you may all be interested to read a recent paper highlighting a disordered DMN in ME patients:

    http://forums.phoenixrising.me/inde...fault-mode-network-in-individuals-with.56258/

    And you may find this quote in particular quite interesting:

    The paper does note, however, that the DMN appears to be functional during periods of rest:

    You can read the full text by visiting www.sci-hub.bz then putting the following URL into the search box: https://doi.org/10.1089/brain.2017.0549
     
    Last edited: Nov 23, 2017
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