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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Vertigo: Unwelcome Gift on My 25th Wedding Anniversary

Discussion in 'Phoenix Rising Articles' started by Mark, May 17, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Valentijn

    Valentijn Activity Level: 3

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    Great article. Not surprised about the doctor's first reaction - surely a middle aged woman couldn't have a serious health problem! :p

    Vertigo is a rare problem for me. I had it badly during the infection that preceded my ME symptoms, and then just one or two other brief episodes. Oh, and several minutes of intense spinning 5 years prior to getting sick, when a neurologist had me try folic acid for a hemiplegic migraine - the migraine did go away once the spinning stopped :D
  3. Sparrow

    Sparrow Senior Member

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    I don't know if it will apply to anyone else, but since we all tend to be prone to taking supplements, I'll mention it anyway just in case.

    I've had a few bouts of vertigo, which was really scary. Dizziness, room spinning, double vision, etc. But for me, most of them at least were related to too much zinc in my system. Vertigo can be a side effect of taking way too much zinc. I wasn't. I took a very reasonable amount (15mg), far away from the level that's it's supposed to be possible to trigger those symptoms. But for whatever reasons, during the time of my bad crash, my body just couldn't handle it. Little bit of zinc meant little bit of vertigo. More zinc meant more vertigo. I even got it a couple of times after eating a bunch of pork or walnuts (both high in zinc).

    Anyway, so long as I keep my zinc intake down (I can tolerate a little over 10mg now, spread out through the day, but no more), no more vertigo. Just wanted to mention in case I'm not the only one whose body is doing unexpected things with zinc. Cutting out zinc intake for a while might at least be one more thing for people having vertigo to try.

    (Note: I think zinc is great. Really important. I'm not anti-zinc at all. ...Just my body is.;))
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  4. Jody

    Jody Senior Member

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    Valentijn,

    It's a good symptom to be missing out on.:) I'm glad you haven't run into it much.

    I think my doctor's reaction was more along the lines of -- middle aged woman, another one who's prone to imagining and exaggerating symptoms. This guy retired a few years ago for which I am very thankful.
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  5. Jody

    Jody Senior Member

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    Sparrow,

    It's always useful to hear of potential side effects when taking too much of something. I hadn't been taking zinc myself at that time. Still have no idea what set it all off -- but hey, why should vertigo be any different from all the other mysterious symptoms that crop up? :)
  6. Crux

    Crux Senior Member

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    Thanks Jody;
    It's bad enough to experience vertigo, but to be patronized about it...unprofessional, but common. ( the shortcomings of some doctors.)
    I guess I'm lucky to have found my vertigo is from B12 deficiency, otherwise, I'd be unable to function. Although there are other causes, such as tumors, infections, etc., vertigo, is one of the neurological symptoms of low B12.

    I hope we don't pass that way again!
  7. Jody

    Jody Senior Member

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    Crux,

    I need B12 to function too, I have discovered. Vertigo hit in 2004, I started taking B12 at a naturopath's recommendation 2 yrs later.

    I'm with you -- let's not pass that way again.:)
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  8. Rrrr

    Rrrr Senior Member

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    Wow. great article, as i deal with the exact same issue -- jumpy vision and weird brain related vision issues. and my brain has never "compensated" since the initial injury 4.5 yrs ago.

    so for you it resolved after a few years? (that gives me great hope!) can you remind me, how many years did you say it took for you to resolve it, and HOW did you resolve it?

    i have had horrible vestibular issues (jumpy vision and just weird vision/brain issues) for 4.5 years with no relief from it -- ever. often can't drive, and sometimes can't walk without holding on to walls or another person. sometimes it gets worse for a few hours or weeks or months (!!!) at a time. but even when it is at its mildest "baseline," things are still all weird and "off" in my brain/vision. i have seen top neurologists and none of them can figure out why my vision/brain has not returned to normal yet.

    but i MAY have figured it out, just last week. i did more research recently (last wk), and i just posted about it on another thread on this forum (a FAMVIR/antiviral thread). this is what i posted, see below:

    1) THE HERPES SIMPLEX VIRUS (HSV) CAUSES VESTIBULAR NEURITIS (VISION/VERTIGO ISSUES)
    - Days ago I was shocked to learn that HSV is a leading cause of vestibular neuritis! See this paper, especially citations #43-52, which list published studies that found HSV causes vestibular issues: http://www.tampabayhearing.com/vestibularneuritis.php#21

    and at the same time, see this:
    2) FIBRO RESEARCHERS FINDING THAT HSV MAY CAUSE FIBRO AND CFS
    http://www.prohealth.com/library/showarticle.cfm?libid=17194
    http://research.ua.edu/2012/08/going-viral-surgeon-professor-team-in-new-approach-to-pain-treatment/

    so that means taking an antiviral could be a "two-fer" killing to birds with one stone. see this:
    3) TWO-FER: ANTIVIRAL PROTOCOL TO ADDRESS BOTH VESTIBULAR AND ME/CFS?
    - See the enclosed case study of 1 patient who took HSV for her oral herpes (HSV) outbreaks and, lo and behold, her recurrences of vestibular neuritis resolved. http://www.ncbi.nlm.nih.gov/pubmed/22154065
    - The researchers in my #2 above point think this exact same virus (HSV) is what causes Fibro and ME/CFS.
    - In other words, an antiviral protocol to address HSV could help both vestibular issues and ME/CFS.
    - And if not HSV, it could be another virus that causes both the ME/CFS and the vestibular issues. E.g. I recently tested high for Epstein Barr Virus and HHV6, which is why I'm going to take Famvir. I hope it helps my vestibular issues (jumpy vision) too.
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  9. Sparrow

    Sparrow Senior Member

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    Seriously. I'm pretty sure nothing could surprise me anymore. Suddenly sprouting dog tails out of my arm? Oh. Okay. Guess I need some new shirts now.

    I was assuming zinc intake probably isn't the root cause for most people, but I figured I'd mention it anyway just in case it made the difference for somebody out there. Of course, they don't even actually know why really high zinc doses cause that side effect (there are some theories that it's something to do with copper, or various other things), so who even knows whether it was my body being weird about zinc or my body being weird about something else that just happened to be triggered by it. :rolleyes:
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  10. Valentijn

    Valentijn Activity Level: 3

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    From what I've read, zinc and copper use the same binding(?) mechanism, and zinc will hog it if there's "too much" zinc. My intracellular zinc isn't high, but my intracellular copper is hella low, so I end up with a zinc/copper ratio of 87.1 with a normal range of 9-16. So maybe there's a problem with the availability of the binding mechanism.

    Ah, here's the article at http://www.livestrong.com/article/504502-nutrition-the-zinc-to-copper-ratio/ . Basically too much zinc means you make more metallothionein, which binds both copper and zinc, but prefers copper. So the copper gets trapped in the intestines instead of being absorbed.
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  11. m1she11e

    m1she11e Senior Member

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    Vertigo is one of my issues that I dislike the most. It came on suddenly about 20 years into my illness. I had some tests run and it turns out I have both kinds of Vertigo you spoke of. I cant figure out my triggers but I have had it completely go away for years and then come back suddenly.

    What I have found is that I have pressure in my spine and behind my eyes days before it happens. I have difficulty moving my eyes as well. It feels like there is swelling in my brain and spine. I usually ice my spine and base of my skill and take ibuprophen if I feel an episode coming on. I also get very tired and my heart races like crazy. The whole thing is AWFUL!!!

    New paint and other chemicals are a trigger but I am not sure what else is.

    Im taking a multil level supplement called Protandim now. Since taking it (and I started when Vertigo was a monthly issue for about 2 weeks at a time) I no longer get Vertigo. I stopped the supplement and within months it came back. It boost Glutathione and is also very antiflammatory. I know we all waste so much on supplements but this one works on my Vertigo. I will still get the eye pressure and feel unsteady but it is short lasting and full Vertigo has not come on for a year now.

    Good luck to you! This is not a fun one to deal with!!!

    Michelle
  12. Mij

    Mij Senior Member

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    My sudden onset was severe vertigo upon wakening, felt like my eyes did a 360 in my head. I also thought I was having a stroke. Was a complete healthy person 1 second before that happened. For me the vertigo is virally induced, still comes and goes.
  13. Rrrr

    Rrrr Senior Member

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    wow. we all have the same thing going on! i did not know it was so common in ME/CFS, but apparently it is.

    rrrr
  14. Helle Nielsen

    Helle Nielsen

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    Thank you for your article. It made me connect some knowledge.
    The ion channel TRPA1 is expressed in sensory neurons of the dorsal root, trigeminal and nodose ganglia, and in hair cells of the inner ear. I have a hypothesis that regulation of TRPA1 is involved in some of the complex biochemistry in ME and comorbidities. I have written several posts about this http://followmeindenmark.blogspot.dk/. I wonder if TRPA1 function also may be involved in vertigo? TRPA1´s role in the inner ear is described here http://www.ncbi.nlm.nih.gov/pubmed/21204497
    Sparrow answered that zink could trigger her vertigo. Zinc activates TRPA1 ion channels and modulate sensory transmission. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677965/ Maybe a coincidence!?! But I like to notice these remarks to be inspired to seek more knowledge.
    Best regards Helle
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  15. EtherSpin

    EtherSpin

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    I experience something like this, when it occurs Im so disoriented I walk into a room and even though Im still walking can not perceive much between the door im about to walk into and then actually being inside the room,to make a video game analogy, its a bit like having a super low framerate on reality but then throw in a little blurriness, loss of peripheral vision and often light and noise sensitivity
  16. Jody

    Jody Senior Member

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    Rrrr,

    It hit at the end of 2004, gradually decreasing and finally being gone (or at least enough to be pretty functional) by the end of 2009. I'm not sure what all contributed to the improvement. Alot of rest helped. I started taking omega-3 oil which is supposed to be good for central nervous system -- all cells need to be coated with omega-3 fatty acids. This may have helped straighten out the confusion caused by faulty messaging which contributes to the vertigo.

    I got stuck at a stage where I could feel it in my right ear (can't explain that, but I could feel it). I had occasional ticking in that ear ... like you might hear from a watch that needs winding. In fact I thought that was what I was hearing till I realized there was no such clock or watch nearby. This would come and go. My naturopath suggested nasal lavage, like you'd do with a neti pot. I had a turkey baster.) Important not to use tap water as that can be dangerous. Lots of stuff on line about how to do this safely and properly.

    I'd blow my nose after doing this and would hear a "squeak" in my right ear. So maybe an accumulation of unsavoury stuff in the sinuses in the right side of my face. After doing this treatment for a few weeks, the squeak went away, ... and the last of the bad vertigo also disappeared.

    I was also taking a tincture that had natural antiviral and antibacterial properties, drank water and chlorophyll which helps clear toxins, used Lymphagen around my glands/ears which helps to keep lymph moving -- would clear sore throats and ear aches fairly well.

    Those are the things that I can recall just now that I think contributed to decreasing vertigo.
  17. Jody

    Jody Senior Member

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    Michelle,

    One of the things that will bring it on temporarily is sensory overload, having to do too much in a short time, multitasking longer than I can handle, working with numbers for very long ... :) My impression is it's tied to sympathetic nervous system overdrive for too long, adrenals being overworked ... that kind of thing.

    In those cases the only way to stop it is to get somewhere away from stimuli, quit thinking, maybe lay down. Also maybe eat some protein and fats if it's been too long without something to eat.

    It's often accompanied by a roaring in my ears and a feeling of pressure and fullness in my ears and neck, seemingly around the glands under my ears ... and a corresponding inability to think even about the simplest things. As the vertigo recedes so does the roaring and pressure.
  18. Jody

    Jody Senior Member

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    Mine was also sudden onset, seemingly out of nowhere. One minute doing ok, the next ... not.
  19. Jody

    Jody Senior Member

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    Yeah, that sounds very like what it did to me.
  20. Jody

    Jody Senior Member

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    Michelle,

    Just remembered something more. Going into an unfamiliar place can also trigger it. It's as if my brain (or whatever) an deal with familiar places, on automatic so to speak. But when it has to learn a new place, and has to navigate it for the first time, my messaging systems become confused and chaotic.

    This does not happen to me as much as it used to, but it can still take me by surprise. When it does it affects my movements, my speech center, and my ability to comprehend language.

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