New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Plugged into electrical socket...

Discussion in 'Neurological/Neuro-sensory' started by Jpenfam, Dec 31, 2014.

  1. Jpenfam

    Jpenfam

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    Hello all!
    I was hoping to see if anyone has experienced a buzzing/humming/electrical sensation all over the body. This has become my constant companion and I have found that taking both Neurontin and Klonopin help with this frustrating symptom. I however have decided to stop with the Klonopin, with Dr.s okay due to side effects, and am looking for a more natural alternative if possible or a less controlled RX.

    I still have the Klonopin for when the sensation is unbearably strong and am thankful to have found that it helps. I have tried a few natural alternatives that have definitely calmed the sensations down but would love more ideas... Going broke with this entire trial and error :)

    Thanks in advance!!!!
    Jackie
    CFS/FMS buddy
     
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  2. ahmo

    ahmo Senior Member

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    My nervous system was on fire. Not only did I feel like I was jumping out of my skin, but I was triggered into over-reactiveness by every sort of stimuli. The first relief was when I eliminated gluten. Eventually getting the correct minerals and enough B12/folate corrected my nervous system. Also GABA. No telling if this is similar to what's going on for you.
     
  3. PNR2008

    PNR2008 Senior Member

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    I have the same humming/electrical sensations that you do and it usually is at the beginning of a bad time for me, in other words I do get more weak or weirdly stimulated and end up bed bound very quickly. I usually take a Vicodin and a klonopin and try to sleep it off.

    The sensation is disconcerting and produces anxiety so I take care of it asap with drugs and rest.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    If you take klonopin every day make sure you taper off the klonopin really slowly or you could have bunch of other problems. I used the titration method to get off 1 mgs klonopin over 4 months, probably still too fast.

    Some docs say to just cut it half for a week and then half but in my experience that only leads to problems except for a very few.
     
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This sensation gets worse for me when I have overextended myself, including being in stressful situations. Rest and Vicodin help.
     
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  6. acrosstheveil

    acrosstheveil Senior Member

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    i hate this feeling. i used vicodin but it doesn't work anymore. gabapentin helps but i hate how you get dependent on it. i have some temazepam i take some too. If this new pain management doc i'm seeing soon doesn't figure something out for me i'm going to ask my reg. doc to put me on benzos again.
     
  7. alice111

    alice111 Senior Member

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    I will follow this thread.. I too get something very similar, and unfortunately NOTHING natural has worked :(
    The things I have found helped are pharma, and compounded magnesium cream helps a wee bit. I posted a thread called "medications to rest and relax" you wanna check out what mess others have recommended.
    It's an awful feeling..
     
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  8. alice111

    alice111 Senior Member

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    Oops ** meds
     
  9. soxfan

    soxfan Senior Member

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    only thing that helps me is a bit of Ativan...I only take it when the sensation is unbearable. I get this a lot because I overextend just about every day but some days I can deal with the awful feeling others I just can't. I haven't found anything natural to help as of yet...
     
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  10. Forbin

    Forbin Senior Member

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    Something similar was discussed on this thread:
    http://forums.phoenixrising.me/inde...g-with-twitches-and-shakes.33187/#post-521936

    Quoting my post on that thread...

     
    Last edited: Jan 22, 2015
    melamine likes this.
  11. Fogbuster

    Fogbuster Senior Member

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    Hey JpenFam, I also experience this "buzzing/humming/electrical sensation all over the body". you experience. It's a great relief to find others who have this symptom too. I call it my wired symptom, its like a stress tap which doesn't turn off. Check out my new thread in the general discussion where I talk about reacting to all food, herbal supplements and spices, I go into greater detail of describing the symptom and my issues with it.

    I've had this wired symptom for years. The only thing which helps tremendously for me is being outside in the cold for 10-15 mins. All you need is a part of your head exposed to the cold.

    It's very interesting that you say those two seizure medications have helped you, I will look more into that as I've suspected for a little while that it could be some form of undiagnosed epilepsy.

    How much did these two drugs help reduce this symptom for you? Does this symptom impair your cognition? It does for me so I'd be very happy to take one of these drugs if I knew it would reduce this wired state I experience!


    Thanks.

    All the best,
    J
     
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  12. melamine

    melamine Senior Member

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    Very interesting. Like resetting something.

    This symptom began as an intermittent one for me, but as nerve damage and associated symptoms progressed, it has become chronic. My latest flare began with a very long and stressful dental surgery, followed by another surgery a month later. That was 6 months ago. Symptoms had increased incrementally since then, engaging some kind pathologic self-generating metabolic loop (the worse it got the worse it got).

    By yesterday it had become extremely uncomfortable and without let-up - much like others on this thread have described. It is like all my veins are vibrating non-stop, plus there is a sick nervous system feeling, depressed mood (not depression), increased fatigue, a heightened awareness (for me) of systemic nerve damage, feeling of lack of any homeostasis, tightness in my chest and back - vibrating sensation there too, a feeling of insufficient breath. It definitely feels neuroendocrine in nature but not specific to any one system.

    I may have inadvertently contributed to the problem by eating more fermented foods around the same time as the stressful surgeries that triggered this one, because glutamic acid is another source of these symptoms for me. Where I had previously tolerated fermented foods in moderation, once sensitized I seemed to become hyper-sensitized more than usual to things I seemed to be tolerating previously.

    For me, the intensity and duration of these symptoms is an indication of how much new nerve damage is occurring. For instance, I have lost more feeling in my fingers over the past 4 months, and the skin on my fingertips and nails have died back further.

    I had tried gabapentin at prescribed 300mg, half doses, and less. It did nothing for any of my symptoms and at standard and half doses also make me feel like crap. When I tried much smaller amounts I noticed nothing good or bad. I don't know it's even supposed to be useful for non-painful conditions (mine is the opposite of pain).
    I have tried many things for this, including balancing electrolytes and minerals, B12, B12 + folinic or Mfolate + other active forms of Bs and all kinds of other things. Everything made it worse or had no effect.

    And then I woke this morning and the vibrating sick nervous system feeling was gone. It had gone from its worst to nothing but a few artifacts, probably of damage that cannot be repaired or will take time. This was even more remarkable in that the vibrating sensation has almost invariably been worse on waking each morning than on going to sleep.

    Last night I took 3 capsules of ashwagandha (KSM-66, 250mg /5%withanolides). I had never tried it and because of a history of bad reactions to things, I had started the previous week with several small doses daily, maybe a half capsule at most. I don't think I had tried a whole cap yet but last night I was feeling so horrible and hopeless about this that I took 3 over a period of 30-60 minutes. Although I had had some trouble falling asleep initially, I slept well for 6 1/2 to 7 hours.

    Dosing instructions say 1-2 times /day. I had thought of waiting until symptoms returned to take more but then decided to take one this afternoon and another this evening. I don't want the symptoms to get a toe hold, but I don't want to overdo a good thing. It's not as if each of the components of an herbal extract can be instructed to follow the same schedule of effects, or in individuals with different metabolisms. Finding a dosing schedule will be a problem even barring any major setbacks. One is coming up next week - more surgery.
     
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  13. Fogbuster

    Fogbuster Senior Member

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    Hey, how uou d
    Hey, how are you doing? How's the ashwagandha treating you?
     
  14. Fogbuster

    Fogbuster Senior Member

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    Hey guys, it's been really interesting to hear your own descriptions of this peculiar feeling. I'm pretty sure we're all experiencing the same physiological stress response but it's most likely affecting us in different ways and has different root causes. Something I'd like you to do some research into is Corticotropin-releasing hormone (CRH), as I have been led to believe this is the main thing causing this feeling, it makes a lot of sense to me and doing some further reading should be of interest to you.


    Out of interest , what are your worst triggers? Mine are the following:

    I react to All food, herbal supplements and spices. I have not read anywhere on the internet where someone has had the exact same issues.

    My worst triggers of my "stress response" in order:

    - Cigarettes
    - Marijuana
    - Histamine rich food
    - Spices
    - Caffeine
    - Alcohol
    - Smoked food
    - Hair spray
    - Gluten/Yeast
    - Exercise

    I think it would be a good idea for all of us to watch this thread, so we can chime in with our experiences of what improves this ghastly feeling.

    All the best,
    J
     
  15. melamine

    melamine Senior Member

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    Upstate NY
    So far, so good. I'm still experimenting with amount and schedule. I am also trying it with and without varying amounts of skullcap and may experiment with a few other related kinds of herbs at some point.

    The next night when I took 1/3 as much (1 cap) I woke symptomatic again, but not as symptomatic as previously. I've felt better in general since starting ashwagandha than I've felt in quite awhile.

    I had some dental surgery today and although it was not as stressful as two previous ones, I am impressed with how I feel so far.
     
  16. Fogbuster

    Fogbuster Senior Member

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    That's good to hear Melamine. I don't want to get my hopes up but after 5 years I think I've come to a fairly strong conclusion that I have MCAS.
     
  17. melamine

    melamine Senior Member

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    @Fogbuster - I should mention that as usual, there are other factors that could be involved in my feeling better, but there is still no doubt about the ashwagandha having a good effect on at least this one particular symptom.

    I have also become extremely electromagnetic sensitive and have experienced quite dramatic increases in buzzing/vibrating exhaustion when using our old computer, and also a FIR sauna. With both there was a direct cause and effect and intensity associated with length of use. I get sparks throughout the day when I touch things, and always when I get out of the car and grab the door to close it. It's my feeling that EMF sensitivity is another, maybe major part of the problem.

    https://maisonsaine.ca/sante-et-securite/electrosmog/ehs-royfo.html
    http://www.magdahavas.com/womens-co...tients-with-electromagnetic-hypersensitivity/
     
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  18. Fogbuster

    Fogbuster Senior Member

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    I com

    I think our paths are at pretty similar junctions atm.

    Interesting what you say about experiencing sparks, that is odd. I'm sorry to hear your electro magnetic sensitivity is so bad. Have you tried walking/sitting outside with a big thick coat on for 10-15 mins? Would be interesting to see if you get improvements in your symptoms like moi.

    In the past few days I have been talking with someone from Longecity (great forum btw) who says she thinks she knows what the root cause is after I made a thread about my issues. She claims it's EMF's, naturally at first I was pretty skeptical an kind of poo poohed it but the material she has compiled over years of research is very compelling.


    So, ultimately my hunch is that I do indeed have MCAS but it's caused by EMF's. She was claiming to me that she had lots of allergies, wired feeling, creaky/achy joints, brain fog etc etc and once she formulated her own protocol and followed it for a few months, she was able to eat normal foods again and was back to her old normal self, if not better than she's ever been. I know I'm getting ahead of myself but just imagine if we could eat normal foods again.....

    I haven't really experimented with exposure to EMF's but I'm pretty sure tonight I noticed when I was on the house phone that the buzzing/vibrating you describe increased.

    Thanks for the info the first one was very interesting to read.
     
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  19. melamine

    melamine Senior Member

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    I visit Longecity every so often. Do you know what her protocol was?
    The problem with electromagnetic sensitivity is that you really need to remove or reduce the sources too, and some/most are not possible, practical or affordable.
    Grounding, by standing and walking on grass/ground and concrete is supposed to help but I never noticed any immediate benefits. Maybe if I had been more diligent it would have helped. I intend to do it more when the weather turns warm again, but I've got to look into addressing the sources of EMFs in our home. I may have to get rid of wifi in the house, for instance. It would be very inconvenient but bad health is more inconvenient.
     
  20. Fogbuster

    Fogbuster Senior Member

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    I'd say it has the largest density of intelligent minds within the community than any other forum. I'll get back to you on that one about her protocol asap. Perhaps a solution around taking wifi away is you could set a phone contract up in your household with as much tethering as possible so you could use your phone's 3/4G as your internet router for your laptop/desktop or any other computer device as an alternative. Also in regards to the tethering I think you can have up to about 5 people using it at once.
     

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