Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
I have only posted once on this site. I mostly read others blogs,
I am writing down what I have done since I have been diagnosed. I have worked hard to overcome my symptoms, done alot of research and of today I have been symptom free for one month.
I still suffer from fatigue but I am starting to exercise regularly to overcome suffering over a year of constant vertigo.
PLEASE READ BELOW AND HOPEFULLY MY BLOG CAN HELP SOMEONE:
NUMBER #1 RULE: KNOW YOUR TRIGGERS!!!!!!!!
I have been suffering for 15 months from MD in my left ear. I was officially diagnosed Jan '15, after months of neurological testing, (spinal taps which leaked and had to have a blood patch, the scare of MS, MRI's because a lesion was found in my right frontal lobe). When i say suffering I mean I have had NON- STOP vertigo symptoms for entire 15 months. I have had 8 severe attacks wherein I could not move, which included Bells Palsey. (It affected my left facial nerve which made my face numb). I have tinnitus, intermittent hearing loss, BVVP, vestibular migraines, nausea, tremors, memory loss, dizziness, vomiting, depression, anger and constant diarrhea which has lead to dehydration.
I am a recent Law school graduate and 10 days before taking the bar exam my first attack happened. I was also an adjunct professor at a university for the past 12 years and I had to tell the school I could no longer teach. I took a job as a contract paralegal while a went to doctors until I could no longer work and/or drive March '15. YOU GET TO A POINT WHERE YOU HAVE TO ACCEPT THE FACT THAT YOU HAVE THIS DISEASE AND YOU NEED TO TAKE A STEP BACK AND MAKE YOUR HEALTH A PRIORITY.
i just finished 10 years of college and I had to accept the fact I could no longer work and practice my career, I had to stay home, relax and get healthy. Below was my first step:
I ordered the following books and read them for information and guidance. Your doctors will help with treatment but you need to educate yourself.
DO NOT SIT AROUND AND FEEL SORRY FOR YOURSELF, I DID AND I GOT WORSE.
Finding Balance: Auther Sue Hickey:1st book I read
this woman had a carrer, husband, busy life and lost it all because of this disease. I understood her pain but she conquered the disease.
Overcoming Menieres Disease: Randy Crane
Menieres Disease: What you Need to Know: P.J. Haybach R.N. M.S.
The Official Patients Sourcebook on Menieres Disease: James N. Parker, M.D...
I followed the Meineres "NO CATS" Diet FOR LIFE:
When I would tell my friends what I had eliminated they would make jokes and I would feel bad for myself, but afterward when I started feeling better and realizing that it was not a sacrifice but I had found it was going to help me live a better life, their comments got lost in the wind.
NO caffeine
NO alcohol
NO tension
NO sodium (limit your intake to 1500 mg per day)
also keep a low sugar diet
****THESE ARE TRIGGERS TO YOUR ATTACKS
ANOTHER TRIGGER.
Remove stress from your life.
You can imagine how stressful law is....I left my career. I could NOT live everyday with vertigo, migraines, nausea and constant diarrhea.
If you are in a bad relationship, do not have support, any stresses (job, family, friends, drama) walk away from it) or try to step back and see what you can do to reduce it.
i joined the Buddhist Temple.
I believe in God, I was born Catholic. But I needed to find inner peace, self healing. So my boyfriend suggested meditation and yoga. I have been attending the meditation and yoga classes at the temple (they are free) It has done wonders with my mind. I am calm, I can sleep better. I was getting about 2 hours of sleep a night, because every-time I rolled over with the BVVP I woke up.
Treatment:
I started with diuretics- 2 months- did not help
They put me in the 360 multi-axel positioning chair but I did not test positive for BVVP.
One round of steroid injections in my left ear- 1x once a week for three weeks. They always give them three weeks in a row. They are suppose to last for 18 months but they only lasted for 2 1/.2 months.
Vestibular therapy- two and half months- very helpful with balance issues but my vertigo was still in play and it kept me from completing therapy.
Another round of Steroid injections in left ear.
but before the last injection they put me in the 360 multi-axel positioning chair AND I did test positive for BVVP in 4 places. They moved the crystals and so far they have stayed in place.
MEDICATIONS:
I take 200 mg of Topamax a day (this helps the fluid)
Imitrex 100 MG (migraine attacks are a TRIGGER)
Indomethacin 75 MG (slow release) headaches
Zyrtec-D- sinus (they have linked sinus problems as a TRIGGER)
THE MOST IMPORTANT HEALING POINT IN MY LIFE HAS BEEN MY BOYFRIEND:
He is supportive, he goes to my doctor appts (i do not drive yet), he researches with me and for me. He knows how much this has affected my life. I still get angry and upset because my otolarynglogists wants to take my time coming back to a normal life. Because even though I am doing better now, MD is for life and that is why I will continue what I am doing.
I am writing down what I have done since I have been diagnosed. I have worked hard to overcome my symptoms, done alot of research and of today I have been symptom free for one month.
I still suffer from fatigue but I am starting to exercise regularly to overcome suffering over a year of constant vertigo.
PLEASE READ BELOW AND HOPEFULLY MY BLOG CAN HELP SOMEONE:
NUMBER #1 RULE: KNOW YOUR TRIGGERS!!!!!!!!
I have been suffering for 15 months from MD in my left ear. I was officially diagnosed Jan '15, after months of neurological testing, (spinal taps which leaked and had to have a blood patch, the scare of MS, MRI's because a lesion was found in my right frontal lobe). When i say suffering I mean I have had NON- STOP vertigo symptoms for entire 15 months. I have had 8 severe attacks wherein I could not move, which included Bells Palsey. (It affected my left facial nerve which made my face numb). I have tinnitus, intermittent hearing loss, BVVP, vestibular migraines, nausea, tremors, memory loss, dizziness, vomiting, depression, anger and constant diarrhea which has lead to dehydration.
I am a recent Law school graduate and 10 days before taking the bar exam my first attack happened. I was also an adjunct professor at a university for the past 12 years and I had to tell the school I could no longer teach. I took a job as a contract paralegal while a went to doctors until I could no longer work and/or drive March '15. YOU GET TO A POINT WHERE YOU HAVE TO ACCEPT THE FACT THAT YOU HAVE THIS DISEASE AND YOU NEED TO TAKE A STEP BACK AND MAKE YOUR HEALTH A PRIORITY.
i just finished 10 years of college and I had to accept the fact I could no longer work and practice my career, I had to stay home, relax and get healthy. Below was my first step:
I ordered the following books and read them for information and guidance. Your doctors will help with treatment but you need to educate yourself.
DO NOT SIT AROUND AND FEEL SORRY FOR YOURSELF, I DID AND I GOT WORSE.
Finding Balance: Auther Sue Hickey:1st book I read
this woman had a carrer, husband, busy life and lost it all because of this disease. I understood her pain but she conquered the disease.
Overcoming Menieres Disease: Randy Crane
Menieres Disease: What you Need to Know: P.J. Haybach R.N. M.S.
The Official Patients Sourcebook on Menieres Disease: James N. Parker, M.D...
I followed the Meineres "NO CATS" Diet FOR LIFE:
When I would tell my friends what I had eliminated they would make jokes and I would feel bad for myself, but afterward when I started feeling better and realizing that it was not a sacrifice but I had found it was going to help me live a better life, their comments got lost in the wind.
NO caffeine
NO alcohol
NO tension
NO sodium (limit your intake to 1500 mg per day)
also keep a low sugar diet
****THESE ARE TRIGGERS TO YOUR ATTACKS
ANOTHER TRIGGER.
Remove stress from your life.
You can imagine how stressful law is....I left my career. I could NOT live everyday with vertigo, migraines, nausea and constant diarrhea.
If you are in a bad relationship, do not have support, any stresses (job, family, friends, drama) walk away from it) or try to step back and see what you can do to reduce it.
i joined the Buddhist Temple.
I believe in God, I was born Catholic. But I needed to find inner peace, self healing. So my boyfriend suggested meditation and yoga. I have been attending the meditation and yoga classes at the temple (they are free) It has done wonders with my mind. I am calm, I can sleep better. I was getting about 2 hours of sleep a night, because every-time I rolled over with the BVVP I woke up.
Treatment:
I started with diuretics- 2 months- did not help
They put me in the 360 multi-axel positioning chair but I did not test positive for BVVP.
One round of steroid injections in my left ear- 1x once a week for three weeks. They always give them three weeks in a row. They are suppose to last for 18 months but they only lasted for 2 1/.2 months.
Vestibular therapy- two and half months- very helpful with balance issues but my vertigo was still in play and it kept me from completing therapy.
Another round of Steroid injections in left ear.
but before the last injection they put me in the 360 multi-axel positioning chair AND I did test positive for BVVP in 4 places. They moved the crystals and so far they have stayed in place.
MEDICATIONS:
I take 200 mg of Topamax a day (this helps the fluid)
Imitrex 100 MG (migraine attacks are a TRIGGER)
Indomethacin 75 MG (slow release) headaches
Zyrtec-D- sinus (they have linked sinus problems as a TRIGGER)
THE MOST IMPORTANT HEALING POINT IN MY LIFE HAS BEEN MY BOYFRIEND:
He is supportive, he goes to my doctor appts (i do not drive yet), he researches with me and for me. He knows how much this has affected my life. I still get angry and upset because my otolarynglogists wants to take my time coming back to a normal life. Because even though I am doing better now, MD is for life and that is why I will continue what I am doing.
Good luck.
Stella, I have a coating on my glasses called Crizal Prevencia that has a blue blocker that really helps a lot. I used to wear FL-41 (rose tinted) glassed but I got tired of feeling like I was wearing sunglasses all the time.
I also started following the autoimmune paleo diet and have had great success with it. It took about 6-7 weeks to really notice the big difference for me but once I did, my constant dizziness almost completely disappeared. I have gotten lax with the diet lately and have had the dizziness creeping back and two vertigo attacks in the past two weeks. So for me, foods play a huge role in management of this condition. I can't take diuretics so diet is huge for me.
I wish everyone success in their quest for relief.