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Dizziness/vertigo just ebv or pots?

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Mij - yes I get the sore throat, odd stomach issues, and sore left ear, numerous times I had doctors in hospital and the ENT looking in my left ear, never anything to see, whatever it is is in there nice and cosy, little bstd!!

oh I meant to add ditching gluten resulted in my thyroid antibodies coming right down to normal.
 

Crux

Senior Member
Messages
1,441
Location
USA
@Crux - What do you think is the source of your infection? Which abx are you taking?

Mary,
I've thought it was the gut, but now I think it could be oral, then spreading, or translocating to the sinuses, brain, gut, and so on.

Since we have so many neurological symptoms, including vertigo, I believe the CNS is also infected. ( I don't have personal tests to prove, just past symptoms.)

I just finished a course of metronidazole, combined with penicillin. The metronidazole penetrates the CNS.
The side effects can be tough. ( I first started the metro some months ago, with very low dose, short courses.)
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
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.
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.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
Thanks, very interesting! This latest vertigo (ebv flare up?) was precipitated by 3 weeks of low grade fever. Plus, 2 days after the vertigo started I had the worst migraine(nausea too) and weird headaches for several days after.
Vertigo and dizziness have gotten slightly better but they are definitely still there.
Going to get current ebv, hhv6 and parvo testing and then possibly start valtrex.
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.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
The vertigo was sudden onset
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.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
My gut is that it is associated with ebv or another virus. The only thing that got me to discover I had ebv titers last year was the precipitating vertigo/dizziness. The dr thinks it could still be active bc I get hot/cold, sweat alot if I try to do too much.
I know the valtrex will not help the vertigo/dizziness so I pray it goes away in a few weeks. If not, I will go see an ENT and get some testing. Vertigo really is horrible.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
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.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
I am about to start valtrex and was hoping that might help. Unfortunately I read about trials that showed antivirals did not work for vertigo. I pray it will go away on its own.
 

Tammy

Senior Member
Messages
2,189
Location
New Mexico
My gut is that it is associated with ebv or another virus. The only thing that got me to discover I had ebv titers last year was the precipitating vertigo/dizziness. The dr thinks it could still be active bc I get hot/cold, sweat alot if I try to do too much.
I know the valtrex will not help the vertigo/dizziness so I pray it goes away in a few weeks. If not, I will go see an ENT and get some testing. Vertigo really is horrible.
I think your gut is right about the ebv. It can affect the CNS..........the virus can move around hitting different areas. I have had horrible vertigo with EBV. I don't have it like I used to thank god. You're right it is horrible and I'm sorry your experiencing this.
 

Crux

Senior Member
Messages
1,441
Location
USA
Well, just finished 2 wks of antibiotic for low grade fever so I had kinda ruled that out. It did stop the fever though.

It could rule out bacterial infection ; or, the particular antibiotic did not penetrate the CNS, nor did it kill the particular bacteria, possibly.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Crux yes metro is a hard abx to tolerate, I tried it several years ago but only got through 2 days, now wonder if that was a herx, but not at present willing to try it again:(. I had Bicillin IM injections last year for 3 months, 2 months after finishing I had a severe viral attack EBV/CMV/HSV 1 &2 all active at the same time according to blood tests......horrible, lasted months.
 

Crux

Senior Member
Messages
1,441
Location
USA
@maryb,
About 6 mths. ago, I could only take ~100 mgs. of metronidazole (flagyl), for 2 days.
Then, about 4mths. ago, I tried again, and was able to take about 250 mgs. for 4-5 days.

In between, I took short courses, low dose, of some other abx. ( I believe they may have lowered some of the pathogens, especially in the gut.) All had strong side effects, but with some improvements, including neurological.

This last time, I was able to tolerate the metro. for 6 days at 500 mgs. in divided doses. (2)

I did have mild neuritis, nausea, insomnia, and moods. Headaches too.(herx)
( I take hydrocortisone, and increasing it helped some of the side effects, or herx?)
All of the antibiotics I've tried seem to lower hormones, sex hormones included.

The metro. has been more effective to my head than the others; including sinuses , mouth, ears, throat, and meninges (?). Migraines are gone for now. Haven't had Vertigo in 2 mths.

...still take extra B12 and choline...may lower doses in the future.

It's mighty strong, but, my energy is so much better...I'll take it again if the need arises.
 

halcyon

Senior Member
Messages
2,482
Definitely sounds like it could be vestibular neuritis. This was how my ME started after an enterovirus infection. Acute vertigo, followed by constant low levels of dizziness/disequilibrium. The ME symptoms followed shortly after. I didn't have any hearing loss, instead I got tinnitus and hyperacusis.

Hopefully it should go away on its own but it may take several weeks or months.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
Definitely sounds like it could be vestibular neuritis. This was how my ME started after an enterovirus infection. Acute vertigo, followed by constant low levels of dizziness/disequilibrium. The ME symptoms followed shortly after. I didn't have any hearing loss, instead I got tinnitus and hyperacusis.

Hopefully it should go away on its own but it may take several weeks or months.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
Thanks. Wonder if I should be tested for enterovirus? Just read that valtrex (starting Tues) causes dizziness/light headed. I'm going to be in big trouble! I will titrat very slowly and see how it goes.