Antiviral Approach to Meniere’s – Month 17 Update



I’ve now been on Valacyclovir for 17 months and still doing great.  I started with the 3 times a day for 3 weeks, then 2 a day for 3 weeks and now on the maintenance dose of 1 pill a day.  I’ve had no vertigo since taking the Valacyclovir.  Some minor dizziness but I never know if that’s from the prescription and supplements or just a side effect of MM.



I reduced the number of “John of Ohio’s” Meniere’s supplements I was taking and seem to be doing well.  My doctor continues to monitor my kidney and liver function with blood draws every 6 months to ensure there is no damage from the extended use of the prescription.  I’m contemplating taking it every other day but terrified that the vertigo may return.  My doctor said she’s comfortable with whatever I decide. 

A trigger for me is definitely gluten.  I’m totally gluten free and it has helped tremendously.  Now if I dine out and there happens to be gluten in something I immediately get the brain fog, dizziness, headache and my bad ear starts to feel full.  I’m also eating organic foods as much as possible and exercising regularly.  I’ve also cut back on my NUCCA (chiropractic) appointments to every 8 weeks.

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Antiviral Approach to Meniere’s – Month 8 Update

I’ve now been on Valacyclovir for 8 months and doing great.  I started with the 3 times a day for 3 weeks, then 2 a day for 3 weeks and now on the maintenance dose of 1 pill a day.  I’ve had a couple minor setbacks but overall feel back to “normal.”


I reduced the number of John of Ohio’s supplements I was taking due to having my first ever experience with kidney stones (may have been caused by the number of JOH supplements I was taking or the Valacyclovir…either way I’m now doing well only taking two of the JOH supplements daily).  The only side affect I’ve noticed with taking the Valacyclovir is that I now get UTI’s every few months.  My doctor continues to monitor my kidney and liver function with blood draws every 6 months to ensure there is no damage from the extended use of the prescription. 


A trigger for me is definitely gluten.  I’m now totally gluten free which was a major lifestyle change but it has helped tremendously.  Now if I dine out and there happens to be gluten in something I immediately get the brain fog, dizziness, headache and my bad ear starts to feel full.  I’m eating organic foods as much as possible, using essential oils and still seeing my chiropractic doctor…but have cut my visits down to just once every 8 weeks. 


I’m so happy to be able to go to the grocery store and not need to park by the cart return to grab a shopping cart in order to get into the store without falling.  It really is about the small things in life that we so easily take for granted.

Knock on wood…everything is going well!


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Kidney Update

The doctors office called today and said the ultrasound showed nothing abnormal.  She said the extreme pain was probably a kidney infection caused from the UTI and since I had been taking an antibiotic that should have cleared it up.  I told her that I’ve had mild tenderness in my side but nothing painful enough to take the narcotic since last week.  She said if the pain comes back to call and they will order more testing.  They said there was also the possibility that it was a stone and that I passed it before the ultrasound.  I’m baffled!


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Addison Update

The surgery went well. She was done in less than 30 minutes. Surgery was the easy part. We are on day 6 of Addison’s recovery and it’s been grueling.

Day 6 and still spending most of her day in bed

Some of my suggestions for anyone who will be having their tonsils and adenoids out.

1. Stay on top of the pain meds. I set my alarm to go off every 4 hours throughout the night for the first 3 nights. They gave her a prescription for Tylenol with Codeine and I swear it only worked for an hour then she was miserable for the 3 hours until she could take it again. On day 2 (after a recommendation from a friend) I started alternating between ibuprofen and the Tylenol with Codeine and it made a world of difference. She is still waking up crying in the middle of the night once the meds wear off. Some doctors are against giving ibuprofen (usually only prior to the surgery) due to risk of increased bleeding but I did lots of research and found it to be a common safe practice for after the surgery.

2. Stay hydrated. Once the throat gets dry the pain will increase. She did not want to drink because of the pain but it is vital.

3. Expect to lose weight. Addison flat out refused to eat for several days. Day 5 was the first time she ate. She refused popsicles and would only eat 2 bites of pudding a day.

4. Expect ear pain on day 2. This is not because of an ear infection but deferred pain from the throat.

5. She gets bursts of energy (usually after the ibuprofen kicks in) and will play but once the meds start wearing off she’s back in bed resting. She spent the first two days in bed all day and night. The doctor stated that the pain of a tonsillectomy is greater than someone who has had open heart surgery.

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Meniere’s Disease Update



Yesterday I had my follow-up with my ENT.  He reviewed my hearing tests and stated that at this point we will continue with the low sodium diet.  He stated that there are several ways to treat the disease and over time the effectiveness of each treatment can diminish. 
 
He stated that once the low sodium no longer gives positive results then he will put me on a diuretic.  After that eardrum injections and lastly – surgery.   

I stated that several people have had success with Acyclovir and asked if that would be something for me to try and he said no.  He stated that there is no known cure and although some people may have had success it’s not successful for all.  In several studies of cadavers and double blind studies nothing has stood out pointing to a viral infection causing Meniere’s.


He stated that the University of Iowa is leading in Meniere’s research.  He stated that they do several research studies but mainly with people who’s Meniere’s has advanced.  He also stated Dr. Rauch in Boston is well known for treating people with Meniere’s.   

He stated that I’m lucky we caught and diagnosed it early.  And that we will continue to monitor it.

He stated once my hearing starts to deteriorate then he will refer me to a Doctor at the Hearing and Balance Institute in North Florida.  I’m hoping that won’t happen :)

I’m continuing with my upper cervical care and natural supplements to help treat the symptoms and hopefully slow the hearing loss.

At this point I’m having good and bad days but more good days so that is keeping me hopeful!


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Dizzy Update 6


This morning I had my 3rd physical therapy session.  After Tuesday’s session I felt really good for the rest of Tuesday and all day Wednesday.  Yesterday I felt the dizziness was a bit stronger but still a huge improvement over last week.  I’m going to continue the physical therapy twice a week until the symptoms are completely gone.  I’ve also scheduled an appointment with a different ENT for a second opinion due to some pressure in my right ear that the physical therapist says isn’t common with vertigo.
I’ve filed for intermittent leave with work which means that I still go to work every day but when I need time off for doctor and PT appointments I won’t be penalized.  I picked up the paperwork this morning that my Doctor filled out.  I felt a little discouraged when I saw “Vertigo – High Chance of Reoccurrence.”  This has been an incredibly hard 4 weeks for me and I can’t begin to think what life will be like if this reoccurs.  I’m trying to stay positive at this point that I’m getting results from the PT and hope to be symptom free soon!


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Dizzy Update 5

After feeling dizzy all weekend and having no relief from the first physical therapy session I returned on Tuesday for my second session. I told the PT that I was discouraged since I had no relief the first time. He reiterated that it usually takes 2-3 sessions until the vertigo is gone. After Tuesday’s session I would say the dizziness is reduced by 80%!! I go again tomorrow and twice a week until it’s gone. Feeling hopeful that there is light at the end of the tunnel!


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Dizzy Update 4


I had my first physical therapy session this morning.  They had me do several exercises that really amplified the dizziness and at times brought me to tears.  They ended the session with head positioning to help the ear crystals move back in place.  I have exercises to do at home and have another session on Tuesday.  They said that it usually takes 2-3 sessions before the vertigo is gone.  The scary thing is that I feel no better after this first session…hoping the at home exercises and second session next week will work.  
Watching Nemo in the waiting area at Physical Therapy

At home exercises to do until next week’s second session


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Dizzy Update 3


I met with my Doctor today and she said my blood work was fine. She said since the dizziness is continuous even while in resting position that it is indeed vertigo.  She said the Physical Therapy should make it go away but that it can reoccur.  She didn’t schedule a follow-up appt as she is confident the PT will work.  Fingers crossed!


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Dizzy Update 2

Physical Therapy called on Friday to schedule my first appointment.  Unfortunately they had no openings until the middle of this week.  The dizziness is still the same – no better, no worse.  I don’t think it would be as bad if it were periods of dizziness but it is constant dizziness.  This is driving me absolutely crazy.  

I hate not being able to walk without worrying if I’m going to pass out.  On top of everything I’ve come down with a cold and sore throat today…aye!  Thankfully I’m able to work from home the rest of this week due to Dr and PT appointments.  I’m praying for results from the PT appt this week.  I meet with my family doctor tomorrow to review the additional blood work she ordered last week.


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