This post is my experience with MD & PPPD only. I am not a qualified Doctor or a specialist ENT. These are my experiences with MD & PPPD only as a patient, my own symptoms and what did or didn‘t work for me with treatment.
Back in 2003 I was diagnosed with Meniere’s Disease (pronounced ~ many-yeah’s or men-years). I pronounce it as the former.
For a few years before my diagnosis I was feeling very off with no explanation or know real way to describe the feeling, except I felt off balance, severe fatigue and feeling ‘foggy’ ALL the time. Read More
(which years later became a word - Brain Fog). I used to say to people I feel like I need to just pull the fog out of my head, it was the only explanation I could come up with for this mystery problem I was dealing with.
I had multiple tests from CT scans to MRI‘s to every other test and blood test in between. All results where negative which was a relief, but it wasn’t answering why I felt so bad all of the time.
At one point after yet another negative test result came back, I sat at my work desk and said to a colleague, I think I may very well just be a hypochondriac?. So I decided to just put up with it and learn to live with it.
But of course that only lasted one week, I couldn’t possibly just put up with it and I knew that there was indeed something wrong with me and that I wasn’t making it up. And by this time I was determined to get answers as it was getting debilitating and interfering in all areas of my life and work.
Going back to 2003 and I moved to a new suburb in my new home with a new local GP, who just happened to specialise in ears as an AirForce Pilot Doctor, he dealt with Pilots ear, equilibrium and vestibular issues. He sent me off to a specialist ENT doctor (Ears Nose & Throat) to have a Brain Stem Response Test amongst other not so pleasant spinning tests done.
You have Menieres Disease my ENT so quietly and so nonchalant said to me, like he diagnosed this condition on a daily basis. I replied with, “I have what”?
SO WHAT IS MENIERES DISEASE
In my non scientific layman’s terms, Meniere‘s Disease is a vestibular disorder of the inner ear that can lead to dizzy spells (vertigo) and hearing loss. In most cases, Meniere's disease affects only one ear. The inner ear makes too much inner ear fluid which can cause severe Vertigo.
According to Joey Reymini at Seeking BalanceMeniere‘s Disease is thought to be a combination of environmental and genetic factors. It is not something that we can predict, prevent or control but we can support healthy recovery and prevent ongoing stressors. Meniere’s episodes may result in permanent damage to the inner ear structures resulting in balance symptoms and permanent hearing loss in that affected ear.
CAUSES OF MENIERE’S DISEASE
The exact cause of Meniere’s disease is unknown, but it's thought to be caused by a problem with pressure deep inside the ear.
Factors that can increase your risk of developing Meniere’s disease include a family history of the condition and a chemical imbalance in the fluid in your inner ear.
Generally an episode or attack can last few minutes to 24 hours and you can experience at least one or two of the following symptoms. For me I experienced the first three.
- fullness in ear
- loss of balance
- tinnitus (ringing in ear)
- hearing loss
- nausea or vomiting
Sadly there is no cure for Meniere‘s Disease as yet. There are some diet, lifestyle and medications that are recommended that may help. But for me non of them have ever worked (except deep breathing and Meditation can help take the edge off) and keeping your stress levels low, but some treatments include:-
- low salt diet
- low caffeine
- drinking lots of water
- medication called SERC to help with vertigo
- diuretic tablets (to help reduce fluid)
- vestibular rehabilitation therapy
- balance therapy
- deep breathing
- relaxation / meditation
MY YEAR OF HEALTH AHA MOMENTS AND A SELF DIAGNOSIS
My Meniere’s attacks stopped completely just a few years after my ENT diagnosis back in 2003 and I finally felt amazing for first time in years, which is very common to not have an episode for up to 10 years at a time, bizarre but true, which ironically is exactly what happened to me.
But in November 2018 that all changed and my Meniere’s Disease returned with avengence or so I thought. Long story short turns out my Meniere’s had morphed into PPPD (persistent postural perceptual dizziness).
How do I know that? Because I now have constant (persistent) debilitating vertigo, brain fog and fatigue 24/7 for almost three years now since November 2018 and it is affecting every aspect of my life. More on PPPD in a future post.
It also turns out Hormones (Estrogen in particular) has had a lot to do with me feeling so fantastic for more than a decade up until November 2018.
How do I know that? Because I started taking the contraceptive Pill a few years after I was diagnosed with Meniere’s back in 2003 and I went off the Pill in November 2018...that’s not a coincidence. (I’ve had lots of health AHA moments this year)
So why don’t you just go back on the Pill I hear you ask. Well, because of my age, I’m now 47 and with age being on the Pill comes with higher risks of breast cancer, heart disease and blood clots.
My Hormone levels in the past three years have been imbalanced due to coming off the Pill (which I didn’t know at the time) as well as the onset of peri-menopause. So my local Doctor started the investigation into the link between my Vertigo and my Hormone Imbalance, which lead to a very short stint on HRT (Hormone Replacement Therapy ~ a very controversial topic), which confirmed my self diagnosis to be in fact correct, because for two weeks I felt fantastic ~ no vertigo, no brain fog or fatigue. But frustratingly I couldn’t stay on HRT, so back to the drawing board I go to figure out what’s next, as the Doctors have no answers for me.
Subscribe below or check back soon with a future post on the link between my PPPD and Vertigo with a Hormone imbalance and what I’m doing about it now.
Until next time, stay well.