Extreme vertigo

Hi Candace, so sorry to hear this. Have you tried an antiviral? Some doctors feel the majority of cases of Meniere's is caused by a herpes virus that embeds itself on a nerve in the inner ear. Many including myself have had great symptom relief from antivirals. It does not help everyone though but it does help a good deal of us, some people have MAV migraine associated vertigo(having a headache is NOT a criteria) and is misdiagnosed as Meniere's and many of us have both MM and MAV
You can search the forums database for documentation about a viral cause for MM and MAV info.

I hope this helps.

 

I have not experienced attacks that long - hope to God I never do. All I can say is that if my attacks were ongoing much less for 24 hrs straight - I would be running to the nearest surgeon to have a laby.

I hope you find some relief. Good luck.

 

I have never had a 24 hour vertigo. I did have a 10 hour one that no matter what I took it did not stop and that scared me enough. It finally just stopped on its own. I am sorry you had to experience it. Vicky is right there are many solutions to vertigo, balance and hearing issues. You should research and see your doctor. Many are saying antivirals helped them. My doctor didn't even mention them and when I brought it up said "We don't even know if what you have is Menieres let's determine that first." "I don't know if viruses are involved."

It is amazing how different doctors have different knowledge or approaches. I don't live n the sticks. These are knowledable guys. Anyway, I wish you quick relief.

 

Welcome Candace. I am so sorry you are experiencing that. I have not had extended vertigo--in fact I am lucky that I don't have vertigo from Meniere's (I just have the tinnitus, hearing loss, and fullness and vertigo from Migraine Associated Vertigo and something called BPPV).

The anti-viral treatment is not in the mainstream with doctors yet, but it is working for a lot of people. It is likely your doctor will have heard of it, but it is not part of his or her routine. People generally don't have problems with side effects with anti-viral medications. These are the medications people take for Herpes Simplex and Shingles. Some people have been on them for decades. It seems like it is very much worth a try in your situation.

Here is a scholarly article that may be useful to show your doctor: http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf. The dosage recommendations are on p. 104. You will see that it mentions both acyclovir and valacyclovir. I was in communication with the author recently, and he said he is now putting his patients on valacyclovir.

 

Ok, EVERYONE should download and digitally archive Dr. Gracek's seminal article above (http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf)

As mentioned by bythebay above, THIS is the information that should given to all physicians who claim ignorance or denial of a herpetic (herpes virus) cause of Meniere's, vestibular neuritis, or BPPV.

This is the most useful, significant information presented on this website in some time. Don't anyone neglect it.

Tell your good doctor to read the abstract, then go right to page 103 and read the section Clinical Series, to note the antiherpetic agents to prescribe, along with dosages and durations, etc.

This is revolutionary, game-changing info. I'm going to try to update my regimen write-up to include this info, to get patients and doctors to go along with both the prescription antiherpetics (so well-described in the PDF) and my regimen, which also provides antiherpetic therapies (differing chemistries, but complementary to the drugs).

Here's the cogent prescription and dosing info in the article:

The antiviral treatment protocol for patients with recurrent vertigo is as indicated below.

Discontinue all previous medical treatments; ensure that patients are cleared for normal
renal and liver function; use acyclovir tabs 800 mg t.i.d. for 3 weeks and reexamine. If there
is significant relief of vertigo, decrease to 800 mg b.i.d. for 3 weeks, then to 800 mg daily as a
maintenance dose. If valacyclovir is selected (in those who fail to respond to acyclovir), use
1 g t.i.d. for 3 weeks with taper to b.i.d. for a further 3 weeks and then 1 g daily as a maintenance
dose. The starting dose of acyclovir was given for a longer period (3 weeks) than that
used for zoster because it was felt necessary to cross the blood-brain barrier to reach ganglion
and satellite cells with virus. Most patients experienced relief from vertigo in the first 2 weeks
but some required a longer period. The gradual lowering dose was then used to find the
lowest level maintenance dose for a given patient. Most were controlled on a single dose daily
but occasionally a patient required an adjustment to 1,200 mg of acyclovir or 1,500 mg of
valacyclovir.

These dosages may require adjustment in patients with impaired kidney or liver function.
The follow-up period was as short as 3 years in the most recent patients and 8 years in the
earliest patients in the series. Of 106 patients with VN (the earliest patients evaluated up to
8 years), 93 (88%) had complete relief of symptoms with oral acyclovir, 54 of 60 patients
(90%) with MD were relieved of vertigo, and 27 of 45 patients (60%) with posterior canal
BPPV were relieved of symptoms. Between the use of antivirals and repositioning maneuvers
(physical therapy), the number of chronically disabled patients who were candidates for
ablation of posterior semicircular canal function (canal occlusion or singular neurectomy)
was reduced significantly.

As a result of these morphological and clinical observations, our approach to the patient
with recurrent vertigo has been simplified. It goes without saying that the patient without
recurrent balance symptoms needs no further treatment after a hearing test and MRI of the
brain (assuming that these are normal). A Hallpike maneuver is included in the initial examination.
Those patients with recurrent vertigo are offered a trial of oral acyclovir (or Valtrex)
for 3 weeks.

Examination at the 3-week period will determine the sensitivity of the particular NT
virus to the antiviral. If there is no relief of vertigo with acyclovir or valacyclovir, treatment
is followed by vestibular tests (videonystagmography and vestibular-evoked myogenic
potential) to determine the responsible ear. If these results are abnormal chemical labyrinthotomy
is offered. The patient is offered a choice between dexamethasone (12 mg/ml) or
gentamycin (80 mg/2 ml), considering the risk of hearing loss (dexamethasone 0%; gentamycin
usually negligible if used in a single small dose).


--John of Ohio

 

Thank you for stating that so clearly, John. Here is one other key passage in the beginning of the same section.

"The choice of acyclovir as antiviral medication was based primarily on cost. Valacyclovir (Valtrex) has better bioavailability but is much more expensive and may not be covered by most insurance plans."

For those of us who can use valacyclovir, might as well go for it. At least there is a generic, and hopefully it will continue to get less expensive.

 

Yes! Thank you John. Your link opened right away and for some reason bytheBay's did eventually after 5 minutes. I am jumping on this as fast as I can get my medical specialist moving!

 

This thread, and Dr. Gracek's PDF is so important, I've made a new thread and posting on it on the Database section of this website.

--John of Ohio

 

Excellent!

John, please note and correct in database thread: Correct spelling of doctor's last name is "Gacek"--Dr. Richard Gacek.

 

Dr Gacek has a later abstract one done this year 2014 but one cant get the full text w/o paying unfortunately

http://www.amjoto.com/article/S0196-0709(14)00072-6/fulltext
Recovery of Hearing in Meniere’s Disease after Antiviral Treatment

Abstract

Objective

Determine the outcome of hearing in Meniere’s Disease (MD) after antiviral treatment.

Study Design

Prospective study.

Setting

University Hospital.

Methods

Thirty one new patients with a diagnosis of MD were treated with antiviral drugs during 2012. Acyclovir or valacyclovir were used depending on insurance coverage and cost. A standard dose of 800 mg (acyclovir) or 1gm (valacyclovir) 3 times a day for 3 weeks was used. The dose was decreased to twice daily for three weeks, and finally once daily for a year or longer.

Hearing test including pure tone average (PTA) and speech discrimination (SD) was performed prior to treatment and 1-2 months, 6 months and 1 year after the initiation of treatment. Effect on dizziness was recorded at each evaluation, hearing was judged to be improved if PTA was lowered by at least 15db and/or an increase in SD of 20 percent or greater.

Results

Hearing was improved in twelve and not improved in nineteen patients. Complete control of vertigo was achieved in those patients with improved hearing. The nineteen patients with no improvement in hearing were divided into 2 groups based on the level of hearing at diagnosis. Nine patients presenting with a PTA of 50db and SD of 50% or better experienced good control of vertigo (6 out of 7; 2 with no follow-up). Ten patients with PTA of 60db or more and SD below 50percent exhibited poor control of vertigo with antivirals (3 out of 10). The duration of MD in the group with hearing improvement was shorter (2.4 yr.) than the group with no improvement (5.5 yr.).

Conclusion

Significant hearing and balance control in patients with MD can be achieved with orally administered antiviral drugs.

There is another thread in database as well which includes about 30 studies supporting a viral cause for Meneire's

 

Thanks Vicki! As I am reading the posts, I get confused with the suggested dosing between Acyclivir and the generic. On a post I think I copied you sent, you said the following (forgive me if it wasn't you): 2400 mg for 3 weeks, if vertigo is under control reduce to 1600 mg for another 3 weeks, if still under control 800 mg for maintenance. Then this out of the link John sent: If valacyclovir is selected (in those who fail to respond to acyclovir), use 1 g t.i.d. for 3 weeks with taper to b.i.d. for a further 3 weeks and then 1 g daily as a mainte- nance dose. The starting dose of acyclovir was given for a longer period (3 weeks) than that used for zoster because it was felt necessary to cross the blood-brain barrier to reach ganglion and satellite cells with virus. Most patients experienced relief from vertigo in the first 2 weeks but some required a longer period. The gradual lowering dose was then used to find the lowest level maintenance dose for a given patient. Most were controlled on a single dose daily but occasionally a patient required an adjustment to 1,200 mg of acyclovir or 1,500 mg of valacyclovir.
It looks like the two aren't even measured/dosed in the same increment for instance MG's in one and the other I've never heard of. Got an appointment with my ENT Dr on Wednesday and want to be sure I ask for the thing that has the highest probability of getting results.
Anybody who groks this please help me out.
Thanks and excited,
Holly

 

not sure I understand your question but acyclovir and valcyclovir(Valtrex) are two different antivirals.
Valtrex(valcyclovir the generic) lasts in the system longer and turns into acyclovir in your body. Acyclovir leaves the body in about 6 hours

 

valcylovir is taken in different strengthsfor MM than acyclovir valcyclovir(Valtrex) is in grams because the doses are usually higher 1000's. 1000 mg - 1 gram. so 3000 mg of valcyclovir= 3 grams 2000 mg = 2 grams etc

 

(valcyclovir)
use 1 g t.i.d. for 3 weeks with taper to b.i.d. for a further 3 weeks and then 1 g daily

means 1 gram 3 times a day for 3 weeks or 3000 mg daily
taper to 1 gram 2 times a day for 3 weeks or 2000 mg daily
then taper to 1 gram or 1000 mg daily

 

Holly,

Here are some things to clarify, in addition to what Vicki has said:

Acyclovir is the generic of the brand Zovirax.
Valacyclovir is the generic of the brand Valtrex.
There is a third anti-viral some here are taking with success called famciclovir, brand name Famvir.
Maybe there are other anti-virals, I don't know.

Acyclovir comes in 400mg tablets. Dr. Gacek's recommended dosage is:
2 pills (800mg) 3x/day for 3 weeks,
then 2 pills (800mg) 2x/day for 3 weeks,
then a 2 pill/800 mg maintenance dose, which sometimes needs to go up to 1200 mg.

The dosage of valacyclovir is as Vicki has described. Sometimes the maintenance dose has to go up to 1500 mg (or 1.5 grams)/day.

The valacyclovir has the highest probability of getting results. He discusses the acyclovir as well because sometimes the valacyclovir is prohibitively expensive.

 

Thank you bytheBay and Vicki for making things clear. Since this is all relatively new to me and the names of drugs and doses in diferent metrics creates some confusion. My Dr seems to do better with very clear requests and this is so very helpful.

@Vicki. It looks like you are on a much higher dose then of the acyclovir? Did your Dr recommend this or did you come by the dosage another way?

I am glad it is helping you two!

 

no I am on the lowest dose of acyclovir for MM 800 mg a day which is the recommended maintenance dose

 

acyclovir also comes in 800 mg pills and when we start that is usually what we take

2400 mg daily or 1 pill 3 times a day
1600 mg daily or 1 pill 2 times a day
800 mg daily or 1 pill once a day or 400 mg taken twice a day.

ofc you can use the 400 mg pills but the daily dosage stays the same

Holly I am on maintenance dose for many months now (800 mg daily)
I just increase by 1 400 mg pill when I am sick or fatigued or my allergies are acting up

 

I tried switching to valcyclovir but I felt horrible on it. I feel fine using acyclovir.