I Have Meniere’s Disease
I do not seek out traditional medical support often at all. My son, Dylan, who is my fifth of six children, is twenty-years-old and just a week or so ago went to the doctor for the first time since he was three-years-old. Maybe it is the Scotch-Irish side of me and the genetic disposition to take care of oneself and one’s own, but I never looked for much medical attention for my six children either. For half of the time I raised kids, we were an Air Force family, so free medical care at that time was available, I just did not use it. I even worked in the medical field for many years both in front office work and as a medical transcriptionist. I had no disparagement for traditional medicine, I just also had no use for it. If something major came up such as a broken bone or something requiring medication I could not get over the counter, sure, we went.
Now that my kids are grown, they carry the same attitude. If they need to go, they go, but they do not overburden their local medical facilities. I am well versed in home remedies and my daughter once laughed at me saying something about how my medical encyclopedia included things like: “Take a Tylenol,” “see if you can poop,” “put a cool cloth on it,” “get out the Neosporin,” “go lie down and rest for a bit,” and “walk it off, you’ll be OK.”
All that being said, it takes a great deal for me to determine that I have a problem I cannot self-manage. Anyone who knows me knows that 1) I hate to talk to the phone, 2) Don’t call me Kat, and 3) If I say I need to go to the hospital, I’m dying. Last week, I had my second life experience ever in which I seriously courted my mortality. Interestingly, the first was very much like this one, but that comes later.
The First Recent Event
On Monday morning of last week, February 12, I was asleep on my couch, which is not unusual. My dogs are around a thousand years old and it is difficult for them to make it through the night without going outside to pee. I sleep the lightest of anyone in the family, so I am usually the one that hears them and truth be told, I usually have to pee at around the same time they do since I am around a thousand years old in dog years. I get up, go to the bathroom, go downstairs and let the dogs do their business, then I stoke the fire back into life and collapse onto the couch to sleep by its warmth. I even have a blanket that lives at the bottom of the couch for that very purpose. I felt fine when I went back to sleep on the couch in the wee hours of that morning.
Eric woke me up a few hours later and as soon as I opened my eyes, I knew something was wrong. I felt odd. There was nothing specific I could identify, I just knew something was very wrong. As I tried to raise up, the whole world slid out from under me. I broke out in a fierce sweat and my heart started pounding in my ears. A wave of profound nausea washed over me. I took deep, slow breaths and tried to sit up. I could feel my blood pressure climbing.
I told Eric I thought I was in trouble. I felt on the verge of passing out every time I raised up. Sweat was pouring off of me. Nathan brought me a cold cloth for my head and I curled miserably into the corner of the couch. I remember telling Eric at some point that I needed to go to the hospital and I have no idea why that did not happen then. Maybe I only said it in my head. The next thing I remember, I was waking up several hours later. I felt weak and slightly disoriented, but clearly, the storm – whatever it had been – had passed. Eric made soup for me and I drank off the broth and ate some whole wheat toast.
The next morning, it happened again, but to a lesser degree. Ultimately, I spent three days on the couch, getting up only to go to the bathroom. I took aspirin in case it was my heart and began taking CoQ10 for my blood pressure. I drank water like mad. By Thursday, I felt somewhat normal again, but was still, for lack of a better term, off. Was it a cardiac issue, finally coming to get me after all these years? Was it a series of strokes? Was it a glucose level issue? I had recently introduced fruits and whole grain bread back into my diet after a very long low-carbohydrate time in my life.
Friday morning, we left for a conference in San Jose, California, that was very important to me on many levels. I lectured on Friday afternoon, still feeling askew. Off and on through the three day weekend, I felt alternately dizzy, nauseated, weak, and sometimes, disoriented.
On Saturday, I had the chance to speak with a friend of mine who recently suffered a heart attack. I asked her what it felt like and my stomach lurched as she described my symptoms, plus the pain between her shoulder blades. I had just that morning developed a sharp pain in my upper right shoulder blade. Damn. Of course, she encouraged me to seek medical advice, which I had already decided to do. I was going to by God make it through this conference. Besides, if I died at Pantheacon, there were no doubt necromancers in the hotel who could bring me back again.
Sunday, I felt great. Better than I had in ages. I was also very glad to be home again that night.
The Second Recent Incident
Monday morning, I woke up with another episode, similar to the week before. Very calmly, I contacted a Reiki worker and asked her to run energy for me by remote. I contacted a friend of mine and asked her to throw a few Tarot cards for me on my health, which I evaluated. As symptoms worsened, I sent my son, Nathan, a message by phone and asked him to go quietly wake up his dad and tell him I needed him downstairs. Eric came down and I told him very simply that I needed to go to the Emergency Room immediately. He asked if he had time to take a shower and I said, “Sure.” While he was in the shower, I phoned a friend of mine to tell her goodbye in case I was dying, which I felt strongly I was. I got her voicemail. I wrote out instructions to allow Eric to finish the Llewelyn book if I died.
The drive to the hospital was strange and other-worldly. For anyone who has experienced a labor and delivery, it was that same transitional feeling between laboring and pushing where you are just not there. A sense of doom overwhelmed me and I knew I was looking at the streets, the trees, the signs, the houses for the last time. I bargained with Santa Muerte all the way there, telling her I was not yet done and asking that she look the other way for a while longer and let me stay. The song “Comfortably Numb” by Pink Floyd came on the radio and I asked Eric to change it to something else. It hit too close to home. I am honestly not sure I could listen to it now. I realized I had forgotten to tell Nathan goodbye when I left the house.
I remember that I walked into the Emergency Room entrance on my own while Eric parked the car. I told the receptionist that I thought I might be having a cardiac incident and described my symptoms. She called a triage nurse and about an hour later, we were taken back for vitals. The triage nurse said, “But you have a history of high blood pressure, right?” “No, I do not. My blood pressure is usually a high normal.” “But you are on medication for high blood pressure, right?” “No… because I do not have a history of high blood pressure, I am not on any medications for high blood pressure.” She shook her head. “Well, you’re going to be now.”
She did an EKG and sent us out into the lobby to wait for another two hours. We watched people come and go. I took the lack of a crash cart and cardiac team to be encouraging. Perhaps if they didn’t believe I was dying, I wasn’t. Or maybe I was and other people here were just dying faster and needed help sooner.
Finally, three hours after our arrival, we were put into an exam room. The automatic blood pressure cuff activated regularly and every time, alarms went off. My blood pressure was hanging out around 195/105 and just was not budging. I was very dizzy, nauseated, and disoriented. The time crawled by. During that time, I had two other nurses say to me, “But you have a history of high blood pressure, right?” “No. I do not. Have. Any. History. Of. High. Blood. Pressure. Therein lies the concern over this spike…”
Eric was patient and kind. He was funny at all the right moments, supportive at all the right moments, and quiet at all the right moments. One of his biggest stated fears is that I will die. He has always been sure that my obesity would kill me at some point and I think he was pretty well resolved to this being that moment. He handled it well.
Finally, a doctor came in and asked all the right questions. He ordered blood work and thankfully decided I did not need an IV as the nurses suspected I would. Because I routinely drink a gallon or near to a gallon of fluids a day, I tend to be well hydrated, but I had been sweating buckets. I remembered what my Reiki worker had said. “Tell the doctor about the ringing in your ears. It is important.” I’d had ringing in my ears since our flight to England in November, but the ringing in my ears was the last thing on my mind.
As it turned out, it was the key that unlocked it all.
As soon as I mentioned that my ears had not stopped ringing since November, he had his diagnosis: Meniere’s Disease. I had never heard of it. My EKG was perfectly normal, showing no cardiac problems currently or in the recent past. My blood work was perfectly normal. My blood pressure was slowing starting to come down. His theory was that the blood pressure was secondary to the intense vertigo. I am grateful he is the doctor I got when I rolled the ER dice. Many people go for years suffering from Meniere’s Disease before they get the diagnosis. He gave me Antivert for the nausea and vertigo and a diuretic to keep down the fluid from my inner ear, which is where Meniere’s Disease does its work.
The next two days were fairly hazy. Despite the estimate that Meniere’s Disease affects only 0.2% of the population, I found out that two of my friends and the mother of a third friend have it. The Antivert makes me extremely sleepy, so I do not take it unless I have another strong episode. I take the diuretic every day.
Around two years ago, I had what I now believe is my first Meniere’s Disease event and it was very similar to my two recent major events. I told myself it was a panic attack from a nightmare I’d been having at the time since it woke me out of a sound sleep.
The New Normal
Since my diagnosis earlier this week, I have read extensively about this disease. Thank God for the internet, right? Symptoms can leave abruptly and come back in a week, a month, or many years or even not at all. A cause is unknown. It is incurable but manageable.
My new reality in coping with Meniere’s Disease is that sometimes, I’m OK and other times, I am distinctly not OK. Many mysteries of the past are explained by this diagnosis. Around three years ago, I found that when I exercise, if I do any floor work or lean backward and raise up, such as doing crunches on an exercise ball, I will keel right over. For years, I have had trouble going down steps or inclines, feeling unreasonably off balance when I do so. If I turn around in a moving vehicle, I immediately get violently ill. I frequently transpose letters and words when I am typing, which is particularly odd because I every job I have had in my adult life involved typing insane amounts of text with reasonable accuracy. In recent years, even a text I send looks like I am stroking out.
My ears still ring constantly. It sounds like the combination of white noise, sort of like you hear in a large seashell, combined with a high pitched whine. It is always there, but sometimes, it is more intense than others. It creates a feeling like a low-grade headache from time to time. I feel dizzy to varying degrees most of the time. Sometimes, it is like intense bed spins, just loop de loop de loop and the whole world going tilt. Other times, it’s just feeling “off,” like you are a degree or two off of true north.
Since the first (recent) major event last Monday, I have never again felt fully well. I believe that will come in time. There is a sort of brain fog. I do not feel like me and I am frequently between the worlds, which is occasionally nice if I want to do shaman work, but I miss clarity and feeling plugged in. This feeling is sort of drifty and disconnected. It’s often like being very drunk. The irony is that I do not drink alcohol.
Over time, each major Meniere’s Disease event will compromise my hearing to some degree and can eventually result in deafness. It usually affects one ear, but mine is in both. I noticed that compared to, say, five years ago, my hearing is already not as distinct as it once was.
Putting It Into Perspective
My training as a Bruja tells me that all we experience in terms of wellness and illness, that entire spectrum, has a metaphysical basis. Rarely are we a physical body experiencing a physical illness or condition, but are instead a physical body experiencing a manifestation of a spiritual/emotional/mental imbalance. Our physical body speaks for the other components because we will listen to the physical body and ignore the others.
My walks between the worlds have told me a great deal about why this condition chose me and what I am to learn from it. That is all personal and I am working on it to help me become a better human and stronger spirit. The imbalance is the key and I will sort that out.
Meanwhile, I have several promises to keep (and miles to go before I sleep) to a certain Beautiful Lady of Death who decided to let me stay on this plane a while longer and chose to tilt her reaping sickle in a different direction.
7 thoughts on “I Have Meniere’s Disease”
Love you oodles. Thanks for sharing.
Love you too, Mikki!
I never had heard that you had this until now. It’s weird now that you have it because I have all of the same symptoms besides the dizziness and nausea, those are just in mild instances but frequent . As for everything else I have had it my whole life.
Glad your here 🙂
Wow, what a terrifying event! I am so glad you have a reason, that it is manageable, and that you are still with us! The world is a better place with you in it!! <3
Vincent van Gogh had this, it was never diagnosed. This is why he had his ear removed. Best to you.
I can attest to tinnitus since i was a young child maybe 4 years old. It has worsened over the decades (now 44) and i have had the fullness in the ears, blocked to feeling like nothing but muffled sounds (happens if i lay wrong on my side on pillow especially), nausea, vertigo, sweats, and i’ve always suffered low blood pressure when standing that never helped (often now its high bp but i get the dips now snd then). Doc’s never said i have this so i dunno.
With my crummy hobo insurance i’ll never know. Oh well in my case. I hardly worry about it since i have so many other pains. I will say…. its made me not like GOD or w/e creates if there is something. Maybe there’s a void that consumes and i won’t remember or be remembered. Heres hoping because ailments suck.