Hi Subs,

I was wondering if you had come across anything more on the herpes virus and lab? The reason I ask is because everytime I get another cold sore or when one is on the way, my symptoms increase dramatically....I can drop from feeling near normal again to about 50%. The symptoms are up until the cold sore heals. Do you think symptoms increase for the simple reason that it's just another virus the body is fighting off and hence some decompensation or could it be more sinister - that the original lesion was caused by the herpes virus and so further episodes are interfering with the vestibular system more dramatically then, say, a cold?

Many thanks.....Scott

By the way, I just made it through the best week yet - 90% overall but last night suddenly took a dive with the arrival of the above.

Hi Scott

....."had come across anything more on the herpes virus and lab?"....

Yep:

There was study to demonstrate viral latency in the VG(Vestibular Ganglia)---
called:

Prevalence of HSV-1 LAT in Human Trigeminal,
Geniculate, and Vestibular Ganglia and Its
Implication for Cranial Nerve Syndromes

---it was done by:

1 Department of Neurology, Klinikum Grosshadern, LMU
Munich, Germany
2 Max Planck Institute of Neurobiology, Martinsried, Germany
3 Thermo Hybaid GmbH, Ulm, Germany
4 Department of Neurology, University of Pavia, Italy

about a year ago----

The study summary says:

Herpes simplex virus type 1 (HSV-1) enters sensory
neurons and can remain latent there until reactivation.
During latency restricted HSV-1 gene
expression takes place in the form of latency-associated
transcripts (LAT).

LAT has been demonstrated
to be important not only for latency but also for reactivation,
which may cause cranial nerve disorders.
Tissue sections of the trigeminal ganglia (TG),
geniculate ganglia (GG), and the vestibular ganglia
(VG) from seven subjects were examined for the
presence of LAT using the in situ hybridization technique.
LAT was found on both sides in all TG (100%),
on both sides of five subjects (70%) in the GG, and
in none of the VG. Using a second more sensitive
detection method (RT-PCR), we found LAT in the VG
of seven of ten other persons (70%).


This is the first study to demonstrate viral latency
in the VG, a finding that supports the hypothesis that
vestibular neuritis and Labyrinthitis is caused by HSV-1 reactivation.
The distribution of LAT in the cranial nerve ganglia
indicates that primary infection occurs in the TG and
GG and subsequently spreads along the faciovestibular
anastomosis to the VG.

Outstanding on the 90%---it does go---but---man---what a trip!!!

:cool:

Subs I'm going to run that off and take along to my specialist. Scotsman I gather you are a Canadian living in Sydney, mind me asking which specialist & hospital you see and what you think of them.

Hi Scotsman,

Funnily enough i also find that my symptoms takle a nose dive whenever I get a bug or just done alot. I dont have cold sores so cannot comment on that and the increase of you symsptoms. But what I would say is that commonly cold sores break out when you immune system is low or you are over tired and stressed. All these things in there own right would make you feel worse symptom wise so maybe the cold sore is a sign you are a but run down??

hey how are your symptoms these day any way?

Thanks for that Subs. Interesting that it could be a herpes related virus or herpes itself causing the problems in many cases. What is strange is that it supposedly only hits people once in their life (viral lab that is) and does not return again whereas regular cold sore type herpes returns again and again.

Ninamarie: yup, you got that right. I have seen only one specialist named Professor Gibson in Newtown near RPA. He's the guru when it comes to running certain tests. Please see the following post where I outline what he did: http://www.healthboards.com/boards/showthread.php?t=66583

I also went to the dizzy clinic at RPA for an ENG. It was not a good experience for me but did show that there was no permanent vestibular damage.

Willsmommy: thanks for asking. I just had the best week in 6 months...about 90% and then I got hit again with something on the weekend which has left me feeling all weird again (virus of some sort). My balance has gone south again but I am confident I'll be back at 90% soon again.....then it's only a matter of time until I hit the big 100 I hope. I'm not even really aware of the tinnitus much anymore so it must be on its way out. Certain foods can still set me off too depending on the circumstances but all up I'm leaps and bounds ahead of the way things were 2 months back.

How about you? Are you still making good progress? Sure hope so.

All the best....Scott

Thanks Scotsman I'll keep those RPA details on file just in case. Mind you I don't like the sound of that 'needle in the eardrum', I don't think I'd let them near me for that procedure, god no.

Thanks Scotsman I'll keep those RPA details on file just in case. Mind you I don't like the sound of that 'needle in the eardrum', I don't think I'd let them near me for that procedure, god no.

Hi Ninamarie,

Actually the needle in the eardrum wasn't as bad as it sounds. I barely felt a thing because they numb the area with an anesthetic first. In fact, the ENG (caloric) test was worse by a factor of 1000 at RPA. I hated ever minute of that one. Freaked me out badly and took me two weeks to recover from the dizziness it created. Never again. It's like you've been shot into outer space from of a canon!!

Completely agree about the canon scott - also took me 2 weeks to recover after it. The yucky thing is I have to have another one soon! AGHHH! xxx

......yucky thing is I have to have another one soon.....

Hi Emsybobs,

Why do you have to go through it again? Was that because they found a problem initially and want to see how well things have improved? I feel for you on that. You're very brave to be subjecting yourself to it again. I don't think I could go through it even if I was paid to! Keep me posted when the big day arrives.

BTW, what sort of symptoms do you have now and how far into this mess are you?

Cheers....Scott

hi all

interesting because on tuesday i had neuralgia all on the left side of my face, it was very sore to touch the skin around my eye, wednesday a cold sore appears on the left side of my lip, very early thursday morning starts really bad vertigo it woke me from sleep it was terrible all day i could not move my head without vertigo hitting very severly, a strange coincidence????????


lorr

Scott.

I am going for a 2nd opinion to London to see a neurotologist hence new ENG.

I am 16mths into this and have the same symptoms as ever - dont want to bore everyone by repeating them but they range from dizzy in head (spinning inside head) bouncing, ear problems, imbalance, drunk feelings - you name it. Started VRT - praying it works.

Brina - does sound a bit of a strange coincidence...hmmm

xxx

Oh great I just love reading the experiences of others with that ENG, particularly now that I've bitten the bullet and scheduled the test, along with a VEMP. Been trying to avoid it, hoped that the VRT on its own would show either a definite improvement or a 100% no change, or something that would make the tests superfluous, particularly as I don't believe for one minute they will show anything at all. Well that was my reasoniong anyway. However there is no clear indication either way, sometimes I think it is helping, others that it isn't. Of course if I go back to the referring specialist all he will say is "well you haven't had the tests, so what else do you expect me to do if you wouldn't do what I recommend".

Hi Ninamarie,

Just to reassure you - I had the ENG test with no problems at all. Two other people I know had no problems either. I mean I didn't enjoy being spun around, (it was no biggie, but then I've never enjoyed fairground rides either) but I had absolutely no ongoing problems afterwards - it didn't increase my symptoms. In fact if I was offered that again or a dental procedure I'd take that. I should say I didn't have the caloric part of the test, only the rotary chair, but the 2 people I knew who were fine had all the tests. We were all able to walk/get the bus home etc..

Everyone is different, different symptoms, responses to stimulus, different parts of their ear damaged etc... they simply won't all have the same response to the test. I got all worked up prior to mine and then wished I hadn't as it was no big deal for me.

Hope this helps,

best

hbep.

....wednesday a cold sore appears on the left side of my lip, very early thursday morning starts really bad vertigo it woke me from sleep it was terrible all day....

Brina,

No, I definitely do not think it's a coincidence...this is the same thing that happened to me last week and also 4 weeks ago in Toronto (and now that I think of it, about 2 months ago as well). I had just finished having a great 6 day stretch - ie, 90% for the first time in 6 months. Then last Saturday night I could feel this tingling sensation I know all too well when I am about to get hit with herpes. I went to bed feeling fine but was awakened at around 3 am Sunday morning and immediately found myself in the midst of a moderate panic attack with all kinds of dizziness. It took 20 minutes to calm it all down again. The next 3 days were very bad again (off and on heart palps, anxiety, dizzy) and even now I'm not so good (one week later). It seems to take me over a week to recover from these herpes events. I just wonder if it's simply because of a virus (in general) stirring the pot or is it because of the fact that herpes is closely tied to the reason we're suffering from labyrinthitis in the first place? Have you now recovered from the herpes event in terms of dizziness/lab symptoms or is it still lingering? If it is herpes related I wonder if treating this with a daily dose of Zovirax would stop the lab setbacks and speed our recovery???

Emsybobs: sure hope you get some results with the VRT and that this new neuro-oto can offer you solutions to this. Let me know how the ENG goes.

cheers....Scott

hi scott,

the severity of the vertigo has dropped thank goodness, its still there when i move my head but much lower level, and i have a general moving sensation going on all the time. yes i wonder if the zovirax would help ???? how r u ???


lorr