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Vertigo

Discussion in 'Neurological/Neuro-sensory' started by Cort, Jul 11, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I'm transferring parts of some posts on vertigo over to here. Here's from Jody:

    My main problems have been neurological, brain fog and parasthesia (the psychedelic swirling, buzzing, woozy sensations) and vertigo. I would also run out of energy faster than the norm, and post-exertional malaise was ongoing. But none of that really is what most people thing of when they hear the word "fatigue".
  2. Cort

    Cort Phoenix Rising Founder

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    Vertigo - Cort

    I replied:

    That's such a great point about the symptoms. Fatigue is of course important that there are all these other symptoms that people with ordinary fatigue just don't have. Vertigo, for instance, Lauren Hillenbrand has terrible terrible vertigo. You've had bad vertigo, I've had vertigo problems on freeways in the past. I couldn't drive outside of the slow lane for years yet you never hear about vertigo associated with chronic fatigue syndrome in the general sense.
  3. Cort

    Cort Phoenix Rising Founder

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    Jody on Vertigo

    Jody replied:

    It's true you just don't hear about vertigo and CFS.

    Yet it has been the one main debilitating symptom for me for the past couple of years. And at its onset in 2004, it hit me so hard I thought I was having a stroke. Doctor patronized me till he took my blood pressure and found it to be something like 160 over 110 (or more? can't remember specifics) Dangerous high, anyway. He sent me straight to the hospital for tests on my heart which -- natch! as all my tests do -- found nothing wrong.

    But SOMETHING had been wrong. During that 24 hr period I could hardly speak nor comprehend what was said to me. It took months to get fairly functional after that. And it's just been this past 6 months that vertigo is not a major problem

    Some people get so flattened, they can't stand up, they vomit, can't eat ...

    Vertigo is a vicious symptom.
  4. Cort

    Cort Phoenix Rising Founder

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    Rosalie on Vertigo

    I love the point you make about Vertigo, I'm one of those that get bedridden, vomit, spin and cry. I go to an ENT on a regular basis, she once did a head tilt test that set my vertigo off and she actually watched my eyes spin. She was pleased that she actually got concrete confirmation of my condition. I was torn between being happy about the findings and trying to stay on the table. I would be curious to find out how many people with CFS suffer from vertigo at some level.
  5. Cort

    Cort Phoenix Rising Founder

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    Jody

    Those are terrible symptoms! I have only a couple of times felt like I might throw up and a couple of times was plenty.

    Congratulations on getting concrete confirmation at least. With the exception of one occasion where my blood pressure was found to be abnormally high any tests I've had done all agree I am in perfect health.

    I went to a chiropractor once who has a fancy table that he can make rise up, lower down, and tilt, with use of a remote control. For me it was torture. It caused the vertigo to flare up so bad I could hardly see and had to hold on to the sides of the table for dear life.

    I asked him if I could just ... climb on and off the thing, rather than go for the ride.

    I realized, after I had an onset of vertigo that caused me to think I was having a stroke that I had had a (much) milder version of vertigo most of the time I've been sick. Didn't recognize it though until I had the full-blown version.

    Because there'd been no dizziness with it, I didn't recognize it. I realize now that vertigo and dizziness are only partly related. The sense of disorientation, of feeling half-drunk, or stoned, ... a type of vertigo.

    I'd had it for years and didn't recognize it.
  6. Cort

    Cort Phoenix Rising Founder

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    Vertigo - Keep Your Feet Kissing the Ground

    Jody has a really nice post on vertigo at Ncubator "Hallucination of the Inner Ear" http://ncubator.ca/Vertigo_Hallucination.html. In it she mentions the need to keep her feet kissing the ground she walks across the Street. I too have had this problem for quite some time - although now that I think about it I haven't for the past six months. I don't know what it is about looking across the street with those two white lines stretching away from you that makes things go kablooey.

    But check this out - one theory of the disorientation that people experience and their tendency to fall as they age is not that their eyes are somehow not reading things correctly but that the connections from their feet to their brain have been eroded. We stand on our feet - if the brain isn't getting enough information from the feet it won't know how to walk properly.

    How to fix this? Rebuild your neural connection to your feet; close your eyes and start walking slowly. This is neural plasticity in action; by focusing on the feet the idea is that the nerves in that part of the brain will light up and start rebuilding themselves. Once the brain is fully reconnected to feet the balance problems will stop. What you don't want to do is focus your eyes on the ground. It works in the short term because the eyes can to some degree overcome the lost messages from the feet. In the long term the neural erosion continues.

    Does this work in ME/CFS? Is the problem the inner ear or another connection in the brain? I don't know. I love neuro- plasticity though! My experience with CFS has been one of moving from a graceful rather athletic sense of movement to one that is rather coarse and uncoordinated. But I think I'm regaining some of that grace back.
  7. Jody

    Jody Senior Member

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  8. Michelle

    Michelle Decennial ME/CFS patient

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    I was just about to post my reply in the sleep thread where this started and thought, wait, this should go somewhere else. And aha! I've found where it was supposed to go!

    I have to say that just about every person I've known with ME/CFS (I'm sure there are some exceptions) has had vertigo or dizziness on some level. It's such a prominent symptom it amazes me that it's not part of the Fukuda definition.

    I had the..um, pleasure (queue sarcasm) of undergoing 6 hours of vestibular testing for my vertigo. The worst part of the test was at the end where they put electrodes around my eyes and then put water in my ear to measure how fast my eyes spun. At the end of the day I did have some abnormal findings, but they didn't fit into any sort of established condition.

    If I remember correctly, the autonomic system controls the vestibular system. If there are problems with the autonomic system in ME/CFS, wouldn't it make sense that the vestibular system would be affected?
  9. Jody

    Jody Senior Member

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    Yeah, Michelle, I think you're right.

    That "stoned" feeling that was THE symptom that I really noticed from the first bout with CFS, I would hazard to guess, is vertigo.
  10. Jody

    Jody Senior Member

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    I understand that type of loss.

    For a long time I had to duck-walk. That is to say, I had to walk with feet wider apart than normal, to keep from tipping. And I had to put my feet down hard. Felt sometimes like I was walking with tree stumps. Lumbering my way along. :)

    Honestly that pun was an accident. My brain sometimes has a sense of humour that even I am surprised by.

    I think, though, that I too am on my way to being lighter on my feet again as I used to be, and anticipate more grace to come.
  11. Angel

    Angel

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    balance

    learning to dance returned much of my balance to me. It seemed to retrain my brain.
    I know it's strange to talk about dancing on this web site, but even slow dancing was helpful in getting my balance back.

    It's been a little wacky the last two weeks, and I think that is because I have been doing too much physically.
  12. Jody

    Jody Senior Member

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    I don't think it's strange at all to talk about dancing here.

    Sounds like a wonderful way to bring strength and balance ... and fun, back into your life. Fantastic.:D
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had a spectacular one-week bout of vertigo when I was in a clinic in Mexico. One morning I woke up, tried to sit up and the whole room just flipped upside down. Docs just said "Dunno, happens sometimes."

    I mention it here cause I think the type of treatments I was getting probably caused it and maybe that could give us some clues. I was getting daily hydrogen peroxide IV's, and EDTA chelation. Also other therapies to increase blood oxygenation.

    Then it just went away, after a whole week when walking was the unthinkable. The results of the one month treatment were very good--got me a few fairly normal years--but some aspect of the treatment caused extreme vertigo. Any thoughts anyone?

    Sushi
  14. Jody

    Jody Senior Member

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    Sushi,

    I hope somebody can offer up some thoughts.

    I'm afraid my thougt is, vertigo is one big fat mystery. When I first had it and started researching I was astonished as to how little they know about what causes it and what can fix it. The medical community throws alot of drugs at it but they don't really know much about the thing.

    I was also surprised to read how incredibly common it is. Even the really extreme, crippling types. People unable to move, people vomiting, people having to be literally picked up and carried the vertigo is so bad.

    And for many of us, it just (if we're lucky) at some point ... goes away. Don't know what brought it on, don't know what made it leave.

    Yet one more unknown to add to my list.
  15. Lisa

    Lisa Senior Member

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    For me, vertigo seems to be problems with my ears that go so far as to change the way my brain is reading the info from my eyes so that visually moving objects while I remain stationary can be a problem too.

    I used to think it was all due to allergies causing my ears to back up but after reading about lymph problems here, I am starting to wonder if some of my intense ear pain is actually from swollen lymph glands. This would then make me wonder if at times that I am feeling the woozyness from vertigo/my ears if it could be from the lymph glands swelling that day and not allergies as I had thought. It would certainly explain why often times when I have it I just wake up that way and only about 30% of those times do I seem to be congested.

    It also mysteriously disappears over night too. Now and then I'll have a few days in a row with it and all but the first day it is less and less, but normally it is there today and gone tomorrow. The times it is almost certainly sinus related it tends to instead be around for as much as a week but very low key in the background. Sort of a general woozy like things are moving very, very slowly - too slow for the eye to see directly but your body can feel the slight shift. Maybe I'm just sensing the Earth's rotation? lol :D

    Lisa
  16. Jody

    Jody Senior Member

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    Lisa,

    Yup, it's quite possible that you're dealing with lymph glands here.

    I've mentioned an ointment called Lymphagen that helps lymph move. It's not expensive, about $20 for a jar that lasts a good long time. Also, tapping (a la EFT or acupressure could help as well.) Something called dry skin brushing ( I use a dry loofah) can help move lymph as well, for the whole body.
  17. Zona

    Zona

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    ...and another kind of vertigo/dizziness

    Years ago Dr Katrina Berne wrote a book "Running on Empty". In it she recommended another book to learn more about sensory overload, actually about the vestibular system and what all can go wrong etc called "Phobia Free". Sorry I've forgotten the author's name now. It does a good job of explaning (he also says that most phobias aren't true phobias at all but are malfunctions of the vestibular system).

    Vertigo can be from many things: inner ear, neck adjustment, eyes-brain function/connection, high blood pressure, meniere's etc.

    I sometimes go this thing where letters would seem to wiggle or bounce around on the page. I happened across mention of same in a book once that just happened to describe the same thing and explaned it came from an eye-brain thing, a kind of vertigo, related to a dysequalibrium!

    Zona
  18. Jody

    Jody Senior Member

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    Zona,

    I get some of the visual disturbance you're talking about. For 3 days, I'd have sworn that the Send/Receive thing for my email had the e and the i reversed, so spelled wrong in my email program. Absolutely convinced that was what I was seeing.

    Then looked again, and the word is spelled right. :confused:

    The thing about vertigo, as you discover the more you try to research it, the less they really know about it. Most stuff is guess work, trial and error and they donot have a clue for the most part as to what the problem is. And, it can be so many different causes.

    And I agree, many things that seem emotional or psychological in origin, as with phobias (at least how we have been taught to think of them) are not at all, they are physiologically based. Like fear of heights.
  19. bertiedog

    bertiedog Senior Member

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    Hi Cort and all

    Vertigo was one of my worst main symptoms from 1979-2002. It used to be horrendous, come out of the blue and I was terrified by it cos it lasted so long and some times I didn't know if I was lying down or sitting up.

    It caused me to have aweful panic too and made me a wreak.

    But... I have been cured of it by getting my adrenals treated and thyroid. My knowledgeable doctor put me on low dose hydrocortisone and later Prednisolone plus I take Armour and a bit of T4. Since starting this treatment 7 years ago I haven't had an attack of vertigo, something I am eternally grateful for.

    I have had dizzy spells but its ALWAYS due to low cortisol. There is no question that vertigo and bad dizziness is a symptom of too low cortisol, I have come across this many times and with many people.

    If there is insufficient cortisol then there is no question that the thyroid is affected too so you get a double whammy.

    Its a great shame doctors are so ignorant about this. I was sent to the top neurological hospital in London way back in the 80s to see if they could find out why I got vertigo. Needless to say they didn't find out and I continued to suffer until 2002 when a 24 hour saliva cortisol test and DHEA test showed up what my problem was. In those days I didn't have problems with fatigue except when I had the actual attack.

    I was one of those people who had sky high DHEA but not very high cortisol, it was like my body needed more cortisol but the adrenals couldn't produce it so instead jI ust got too much DHEA. It was this that was causing the horrendous panic attacks and also gave me such lack of energy.

    Since being on treatment I have got my life back but can still feel when the cortisol runs out usually during the evening but I try and put up with it until 6 am the next day when I take my first dose of the day. I still have to pace myself or I will make myself feel quite unwell.

    I would recommend a 24 hour saliva/DHEA test to see what is going on and you can order these through Genova, www.gdx.net.

    Hope this helps.

    Pam
  20. susan

    susan Senior Member

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    Pams experience has just mirrored my own experience. I became very dizzy. I had a thyroid test done at the hospital, sent me home without a result telling me my Doctor would ring me if there was a problem. My Doctor never even got the results so I sat home for months not getting better, poor sleep, sooo tired and by chance on my next visit I asked him to check......My T4 was thru the roof. I had ordered my Adrenal saliva test myself about a month before and my adrenals were rock bottom and DHEA high. So tired of enept DRS. Isocort raw adrenal tabs always brings me back on top as I cant take hydrocortisone.

    Now the journey back to health starts all over again.

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