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Dizziness/vertigo just ebv or pots?

Discussion in 'General Symptoms' started by Clerner, Nov 7, 2015.

  1. Clerner

    Clerner Senior Member

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    Woke up Oct 17 and put head to side/back and had severe spinning(vertigo). This has continued everyday since. Dizzy when standing, but spinning with head movement (mainly back and to the right) when lying in bed. Made me nauseous at first but have no gotten use to it! Is this POTS or just part of high ebv titers and active ebv? Worth getting tilt table test? Thanks for any advice.
     
  2. Vasha

    Vasha Senior Member

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    Hi @Clerner,

    I think many of us have had vertigo at one time or another, so I'm sure others with more information will chime in, but:

    1. First, sending you good thoughts! Vertigo really is miserable.

    2. Please do consider seeing your doctor. Vertigo can be caused by many, many things, some benign, and some not (for example, stroke). Even though the chances are that it's not one of the worst reasons, it's important to know.

    3. Also, for some forms of vertigo, there is effective treatment. If you have developed Benign Paroxysmal Positional Vertigo, then misplaced crystals in your ear canals may eventually resolve--or they can be moved back into place with a simple head maneuver done at the doctor's office (I so wanted this to be the cause of mine, though it wasn't :) ). For most kinds of vertigo, physical therapy that can help you accommodate it and even improve it. I had PT that really helped (it took time).

    My PT sent me to this website, which has an unbelievable amount of information: http://www.dizziness-and-balance.com/disorders/index.html

    I hope this helps a bit!

    Vasha
     
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  3. Clerner

    Clerner Senior Member

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    Thalks for the reply. Yes, vertigo is awful! I did think BPPV at one point. Do you know how they test for that? I have told my Dr and he refers me to infectious disease, but they won't see me unless I have a fever. I don't believe my doc knows what to do. He laughed at the idea of cfs. I wonder if I need to see an ent? Thanks foe the website, I will check it out.
     
  4. CantThink

    CantThink Senior Member

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    Could you have labrynthitis? A friend of mine had this and she suffered severe vertigo - it went on for some weeks or a couple of months, but she is better now.
     
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  5. Clerner

    Clerner Senior Member

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    Maybe. That comes with some hearing loss and I think and I may have some slight loss??The vestibular neuritis they think comes from a herpes virus- and ebv is a type of herpes virus. Very interesting... ( I have high titers of ebv). Going on my 3rd week. They say it can last usually 5 was but up to 9 wks!
     
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  6. Vasha

    Vasha Senior Member

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    Well, that's goofy (only referring to infectious diseases etc.). I think the test for BPPV is just that they shift your head in a particular maneuver. A GP *should* know how to do it, I would think, but that doesn't mean he will... my neurologist tested me for it.

    I would have thought he'd refer you to neurology first, since vertigo is often neurological. It might be worth asking?

    Vasha
     
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  7. Vasha

    Vasha Senior Member

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    Oh, yes-that's a good idea--that's a common one, too. Could be why the doc referred to infectious diseases.
     
  8. Clerner

    Clerner Senior Member

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    If it is vesibular neuritis from a virus they can't do anything but help symptoms. A study showed antiviras did not help.
     
  9. Mij

    Mij Senior Member

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    My sudden viral onset 24yrs ago was extreme vertigo in the morning. My neurologist sent me for BPPV testing, it included pouring cool water in my ear and counting in the dark backwards, this brought on that intense vertigo again. I also had a brain auditory test. everything was normal.

    I've had recurrence of the same vertigo for years, it's always viral, I may or may not have other symptoms. Sometimes my eyes shift from side to side and I have to keep my head perfectly still when I sleep or else I'll spin.

    I've gotten used to it and it no longer worries me.
     
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  10. bertiedog

    bertiedog Senior Member

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    I suffered with extreme vertigo attacks that meant I couldn't really move at all and were the most frightening experience I have ever experienced. They started in 1979 and would come and go until 2002 the year I finally got my thyroid and adrenals treated.

    Thankfully since then I haven't had an attack but do get dizziness when my cortisol is too low or if I have a specific sort of migraine starting but these are nothing like what I suffered. I often think those frequent vertigo attacks scared me so much that they were one reason why my adrenals could no longer produce sufficient cortisol for my body to function properly.

    I hope that @Clerner can soon get this sorted. I did have all the traditional tests but they could never find a reason for my vertigo attacks.

    Pam
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Acute vertigo like this is very common. I have had it twice in my life. My wife has had it once. It tends to get called vestibular neuronitis or labyrinthitis but I don't think anybody really understands it. It may well be precipitated by viruses but if you have had high EBV titres for a long time EBV would seem unlikely to be relevant. I don't think it has anything to do with CFS or ME.

    The important thing is to exclude other rare causes of vertigo and an ENT specialist will do this all the time. A neurologist would also know what to do. The caloric test with water in the ear (probably a more modern version now) are really to assess long term vestibular function as much as anything I think. They may not be relevant while you in the acute phase.
     
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  12. maryb

    maryb iherb code TAK122

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    My ME started with an onset of vertigo, coupled with nausea so bad I was unable to eat or drink for a couple of days. I saw an ENT consultant who could find nothing, (who was also the kindest doctor I've seen since getting ill) but he tried the Epley Manouvre which did reduce my symptoms temporarily, .during this first episode I was hospitalized due to severe dehydration (the ward sister said it was probably some sort of virus) the doctors said it was probably a migraine!!!...

    I've had these attacks several times since getting sick (10yrs), I've been fortunate to be able to access private testing
    and each time the test has come back for an active EBV or CMV infection, so for me I know it is the cause.

    When I was well I used to swim a lot, once had a viral infection in my inner ear , it was pretty bad, lasted a few days but I just got better as people do and life carried on as normal, nothing like the sort of attacks I've had since getting ill, these can take me months to recover. There is a massive difference between an attack on a well person and one on an already depleted body.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member

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    You make it sound as if I am unsympathetic Maryb, but I am only trying to give a straight opinion. The first time I had it I also had nausea and could not drink. I was unable to move from one position in bed for several days - that is the way it is. The doctor who took over my rituximab clinic is a well person but she had several months off work with her recent attack of vertigo. It is totally disabling for anyone. I honestly don't think it has anything specific to do with ME.
     
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  14. Gijs

    Gijs Senior Member

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    I have a depleted body with ME/CFS and POTS and i also have had a vertigo attack once. It was very disabling and after a week it was gone. I think it is awful for healthy people too.
     
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  15. duncan

    duncan Senior Member

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    I have attacks of vertigo and dizziness that come and go. They are usually triggered by something, e.g. driving, or going down a stairwell. After years of such attacks, I would think I'd become innured, but they are usually just as unpleasant today as they were over a decade ago.

    I have bilateral vestibular damage. I do not know how common this is in ME/CFS. I ascribe it to Lyme, but I cannot prove that. Certainly no clinician or researcher has been willing to claim that; the best I could get was it is possible the damage is due to Lyme.

    Could it be due to some mechanism associated with ME? I tend to agree with Jonathan Edwards, but again, is there any way to demonstrate one way or another?

    It would be interesting to see what portion of PWME has vertigo issues.
     
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  16. Mij

    Mij Senior Member

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    What causes Myalgic Encephalomyelitis?

    M.E. expert Dr Byron Hyde explains that:

    [The] onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several. The onset illness is associated with either a low grade or subnormal temperature, headaches, sometimes persisting and accentuated by movement with intermittent attacks of vertigo or dizziness. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the infectious triggering illness (1998 [Online]).

    http://www.hfme.org/methemedicalfacts.htm

    I would say that those of us who had a sudden viral onset, vertigo attacks are a common symptom.

    I understand what Dr. Edwards is saying though, it is not specific to M.E.

    but with my particular history of viral M.E.- it is. Before my first morning vertigo attack I was a very healthy functional 29 yr old women, never sick in my life. I was never the same again after that.
     
  17. maryb

    maryb iherb code TAK122

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    I wasn't trying to make it sound like a mine is much worse than yours type of post @Jonathan Edwards , it is a rotten thing to suffer from whether a well person or not and the symptoms are just as severe, what I was getting at is it lasts much longer in the sick, months and months, and in my case repeated attacks. I only ever had it once when I was well, and my doc then said probably picked it up swimming.

    My ire is mostly aimed at the hospital which I was admitted to twice, never once was I tested for viruses and have always been told by doctors here there's nothing they can do, it'll go in its own time. At least my lovely ENT consultant was honest and said in rare cases it may never go. Private doctors here are reluctant to prescribe Valcyte, which needs a lot of monitoring via blood tests, but which is the drug of choice for CMV, hence my negative PCRs meant I couldn't have it. I know its not a drug to be taken lightly (no pun intended) but I would be prepared to do it if it meant an end to this nightmare of attacks.
     
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  18. Crux

    Crux Senior Member

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    I suspect there could be a bacterial infectious cause to vertigo. There are bacteria and other microbes that utilize nutrients in the body, such as choline and B12.

    Deficiencies of these nutrients have been shown to cause vertigo.

    I've had many episodes of vertigo, even when taking these nutrients.

    I haven't had an episode since treating myself with antibiotics.

    Of course, there can be many causes.
     
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  19. Mij

    Mij Senior Member

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    My family physician also had one vertigo attack like this, only once.

    My first attack was not accompanied by any other symptoms, not even nausea. I thought I was having a stroke. It took a few days for it to stop and then I was fine for a few months. I was vaccinated several times a few months later. I slowly started experiencing a mild sore throat, sore ear, stomach grinding, unusual equilibrium problems and stamina reduction(I wouldn't call it fatigue). Six months after the initial vertigo attack, it came back again. At that time my anti-thyroid antibodies were "extremely elevated", I was sent for a thyroid scan. My thyroid function was fine, the endo told me it was viral and to wait it out- "it could take months".

    That was 24yrs ago, and for 15yrs after that I never experienced another vertigo attack. For the last 9yrs I get them all the time, sometimes it's just one attack, sometimes it goes on and off for weeks. I need anti virals, just as @maryb states.
     
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  20. maryb

    maryb iherb code TAK122

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    @Crux - What do you think is the source of your infection? Which abx are you taking?
     

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