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Stress triggered my ME/CFS & Need treatment for Sensory Overload

Discussion in 'ME/CFS Doctors' started by Danesh, Aug 29, 2012.

  1. Danesh

    Danesh

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    Most of the treatments I've had and use seem to target symptoms common to viral induced CFS... my immune system is hyper, anxiety comes easily, but I never get a cold or flu. My CFS begain after high stress over years, and my symptoms are worsened by stress. Some I can't change (adult daughter with severe illness living with us). Although I'm holding my own with physical conditioning, pacing 5 minute walks or yoga several days a week, my sensory sensitivity, anxiety and brain fog is much worse, and these years more debilitating than physical challenges. It's hard to watch part of a video, be in a moving car, read, or be with people. I am homebound, unable to handle social events or visitors and grieving the possibility of not being able to attend of my son's wedding. I don't know how I would be able to manage all that's necessary to be at even part of the wedding itself, in January. It is local, so if I could find something, like a Meyer's cocktail or Glutathione infusion (which do nothing for me) maybe I couldn go at least to the ceremony. Anyone know of treaments targeting CFS sensory overload, and anxiety in particular? I already take Klonopin for sleep, Armour Thyroid, Omega 3s, Vit B 12 shots, and am good at pacing activity... except when I'm upset. Like now

  2. Dainty

    Dainty Senior Member

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    Before I get to my story, you might want to look into Isolation Tanks, also known as Float Tanks or Sensory Deprivation Tanks. The singular purpose of them is to remove all possible stimuli from your brain. Not only do you not see or hear anything, but also your sense of touch is removed. You float in a few inches of water that are so completley saturated with epsom salts that it's impossible to sink, so there's no effort to the floating. The water is skin temperature, the air is skin temperature, so it feel liek nothign at all is touching you, and there are no pressure points.

    I haven't (yet) used this myself but I'm really looking forward to it. Some people buy their own and even sleep in them! They're qute pricey, though. Here's a page of used ones for sale.

    The treatment I am currently experiencing drastic improvement on, cranial osteopathy, is addressing my sensory overload.

    For my case, it turned out that I had numerous structural problems causing my body to be continually wound up as well as impacting my brain functioning. These were not things my chiropractor or regular osteopath were able to locate, but the moment these problems began beign worked on it became possible for me to enter a deeper state of rest.

    I temporarily became even more sensitive to stimuli, but the rest I achieved without it was amazingly more restorative than any rest I've had in the past decade. After several months of healing I'm now significantly less sensitive to stimuli - a low-flying airplane used to send me into hysterics from the extreme sound sensitivity, and the last time I heard it I even enjoyed the sound!

    For me, I currently have one foot in and one foot out, I've develope da theory about my own sensory overload. I only become sensitive to stimuli when my brain is attempting to rest. Just like any healthy person tryign to fall asleep, that water dripping, dog barking, lights flashing is going to become unbearable when at any other time they might not even notice it. All the years before this, my brain was continually in a state of trying to rest and not achieving it, so I was extremely hypersensitive to stimuli, continuously. Now that I am at last capable of resting well, my brain is no longer in that state all the time.

    It still sometimes falls bakc into that state, particularly if something starts itnerfering with my rest. I'm a thte poitn now wher I can actually "wake myself up" more and then I handle the stimuli okay - not pleasant to wake myself up with fast music or whatnot but it stops the stimuli from being a "shock" to my system like it is when my brain is in the "trying to rest" mode. The more I'm able to actually achieve effective rest (which, again, was impossible before I began addressing my structural problems) the more my default is switched to tolerating sensory input without another thought rather than it intruding into my psyche.
    merylg likes this.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    My mother has sensory overload as part of Alzheimer's disease. I give her Calmes Forte by Hyland's, Inc. I don't want to go into sensory overload with her (she would deny it), so I give them to her at bedtime as a sleep aid. They reduce, but do not eliminate, the sensory overload. A few years ago I didn't think they were doing much good, so I stopped them. I was surprised at how much worse she got. I think if you took them through the day, as they are supposed to be taken for stress, they would do a better job of controlling sensory overload.
  4. August59

    August59 Daughters High School Graduation

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    The theory behind the "Isolation Tanks" sound very interesting. For people that can't afford to buy one have you seen options for renting time in one of these tanks?
  5. nanonug

    nanonug Senior Member

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    Have you tried risperidone?
  6. ukxmrv

    ukxmrv Senior Member

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    The gupta method seems to be popular with people with anxiety in CFS. The inventor claims it is also good for ME (without anxiety) but this doesn't fit with patients I know in the UK who have tried it.

    Hope you can find something to help and get some relief

    http://www.cfsrecovery.com/
  7. Dainty

    Dainty Senior Member

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    Here's one directory I found, but through googling found others. So far I've seen a price range of $50-80 USD for 1 1/2 hour float. Personally that seems a little steep to me.

    Renting one for exclusive personal (home) use isn't something I've seen offered. Transport is difficult, not just due to bulk but the supersaturated water - ~200 pounds of water and ~800 pounds of epsom salts.
  8. August59

    August59 Daughters High School Graduation

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    I would imagine renting time in one at a Health Spa could turn into a substantial hygiene undertaking for the spa owner.
  9. caledonia

    caledonia

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    Neuromedulla Complex by Professional Health Products was very helpful for me when I had a huge exacerbation of noise sensitivity while going through Zoloft withdrawal. It was so bad that hearing a lawnmower way down the street with the windows closed and earplugs in drove me nuts. One half of a pill per day was the right dose for me.

    CoQ10 100mg daily works really well for me for brain fog. Going from getting lost while driving in my neighborhood and only able to read the headlines of newspaper articles, to being able to read a big fat book like Osler's Web.

    You should notice both of them working within a day or two if they're going to work for you. Like the poster above and her mother, it's kind of subtle, so you feel more normal on it (so you might not think it's working) but you really notice it if you miss a dose.

    There shouldn't be any conflict with the meds you're taking, which is similar to what I was taking.

    You can also try some gentle support for your adrenals by replacing lost salt, magnesium, potassium and vitamin C mixed into a water solution and drunk 4X a day. If you're craving salt or salty foods, having twitching feet, heart palps, etc., this is a clue that this is needed (outside of getting actual adrenal saliva testing).

    Actual adrenal glandulars are halpful for some people, but bad for others. You don't know until you try it. You definitely want to get tested before messing with this though.

    ps. for the wedding, I would take extra Klonopin and have a good time - lol. Maybe experiment with it before hand so you'll know how you'll react and how much to take.
  10. Sparrow

    Sparrow Senior Member

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    Some of the supplements I'm on might be helping this, but I have yet to find anything that was a clear winner.

    The only thing I've found to get rid of it is backing off even further on mental activities for a while. I used to be in a constant state of overload, and just didn't know it. I thought I was only overdoing it when I started having really bad symptoms but really almost everything I was doing was draining me out and I was doing WAY more of it than my body could actually handle.

    Now most of the time it's okay (I still have some brain fog issues, but the overstimulation doesn't show up if I stay within my limits). If I overdo it and trigger the symptoms again, it takes a while to build my tolerance back up again (days or weeks or more, depending on how far over I've gone). I've had to do a lot of trial and error to figure out what I can do in a day without dipping into my reserves (e.g. I can watch 40 min of TV, but not 60. I can talk to someone for half an hour, but not two hours, etc.). If I do go over and need to let my reserves build back up, I have to stay away from pretty much everything for a while, which stinks. A lot.

    Anyway, as much as it sucks, my suggestion would be to completely avoid anything that triggers that overstimulated feeling for a while (tv, reading, conversation, etc.). It makes sense in a way - I think that's the advice they give to people who've had a brain injury that needs to heal. If something's wrong up there, and you're still constantly trying to use it, it can't heal. Just like a broken ankle. From there, the secret is to gauge your level of daily activity so that it hopefully doesn't get re-broken again.

    It's hard, though. Really hard. I would prefer a pill. ;)
    merylg likes this.
  11. Dainty

    Dainty Senior Member

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    Actually, they're much cleaner than any swimming pool or hot tub, since it's literally impossible for any pathogens to propagate in the supersaturated water. Moreover, all isolation tanks come equipped with filters to remove particulates and sterilize the water, and to my understanding people are usually asked to shower prior to entering.
  12. Valentijn

    Valentijn Activity Level: 3

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    N-acetylcysteine seems to have calmed down my issues in that area. I do Jarrow's extended release 3 times per day, and no more sleeping problems as well.
    nanonug likes this.
  13. August59

    August59 Daughters High School Graduation

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    Well that takes care of that. I'm going to check around here and see what I can find out. Thanks
    Dainty likes this.
  14. nanonug

    nanonug Senior Member

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    This is a good recomendation as N-acetylcysteine might indeed do the trick.
  15. Danesh

    Danesh

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    Thanks for all the ideas, everyone. Some familiar, some reminders, some new. Bless you!
  16. Danesh

    Danesh

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    You sound like me. I have canceled two visitors, including Thanksgiving, and will not go out anywhere for a monthor more before the wedding. But it IS hard to turn off the radio, audio book, or movie and just lie there and talk to God, or be silent, AFTER you have recovered from a crash. Discipline! That's what I need. Thanks, coach.
  17. Ocean

    Ocean Senior Member

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    I don't have anxiety but I have overstimulation from my environment, better at some times than others. I associate it with my ADHD but it's been much much worse since CFS got worse. Now, I'm struggling with bad PMS or PMDD and the problem gets even worse during that time along with other ADHD issues like executive functioning problems. I decided to retry some Adderall prescribed to me for ADHD to see if it helps. I remember from past experiences that it seemed to really calm my reactions to everything in my environment. I don't know if it would help others without ADD/ADHD though.
  18. PhoenixDown

    PhoenixDown Senior Member

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    Has stress always triggered your symptoms? If not, at what point in your life did it start?
  19. paclabman

    paclabman

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    Haven't been on the forum in a really long time but happened to see this topic.

    This is a low tech thing ... but a big part of my sensory overload is from sound (especially if I'm PEM'ed). My wife keeps foam ear plugs for me in her purse. Cutting down a lot on the "noise pollution" has helped me in all kinds of situations.

    I could probably deal with an indoor wedding OK if there's not a lot of talking before the ceremony, but an indoor reception would really be tough.

    The foam ear plugs are very inexpensive. If sound is part of your sensory overload, it would be easy to see if they help. The ear plugs are great with grandkids, my one step-son and son in law both talk loud, sporting events, g'kids dance recitals etc etc. Without them, the sound gets to be painful and it's all down hill from there. I can carry on a conversation with someone sitting next to me, though it might be a little difficult.

    Then there was the time when my wife was out of town and I felt well enough to drive and have breakfast out. After a couple of minutes of all the talking, clanking of dishes etc in the restaurant I knew that breakfast would not be much fun. Ear plugs ... I shouldn't leave home without them.

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