When illness strikes suddenly and then persists, without proper diagnosis, without long term help/easing, and becomes a chronic condition that becomes life-changing...
My foray into this unwelcome land began April 2023 and persists today.
Here is some background of my journey:
Vertigo sent me weaving/swaying to the ground, shortly followed by projectile vomiting, gross. I was unable to sit up or stand up for nearly half an hour. This was followed by 2 to 3 days of severe fatigue, and most unfortunately, additional 'episodes'.
The Epley Maneuver that so many of my friends (and my mom) learned to prevent their vertigo did nothing for me.
Months of tests ensued, visits with 2 ENTs, a search for a vestibular therapist, a guess of probable Meniere's Disease, possibly Vestibular Migraine was given.
The vomiting was helped with Zofran (Odansetron) prescription (nasty side effects, but it does usually stop the vomiting).
Meclizine prescribed for vertigo.
Sleep apnea also present. Couldn't handle CPAP. Major surgery on my nose (4 operations to correct internal issues March 2024) allows me to sleep better.
Severe fatigue and tinnitus and balance issues persisted.
Vestibular PT helped after a few months (went twice a week for several months, still do several PT exercises at home daily).
Vision issues developed -- double vision, large floaters, eye fatigue.
My vision issues are complex. My ophthalmologist sent me to a specialist. 8+ months of vision therapy has helped my double vision (so now daily vision PT exercises added to daily vestibular PT exercises). I now juggle 3 or 4 pairs of glasses back and forth all day long -- near vision, prism lenses for far vision, Avulux wear-over glasses all day long indoors, wear-over polarized sunglasses outdoors. I keep curtains closed and can no longer enjoy bright days outdoors or in.
I am told the increased vision challenges, light sensitivity, and extreme sound sensitivity are the reasons that Vestibular Migraine is my most likely strongest diagnosis now. [Even though I rarely have headaches, and none that would fit the 'migraine' description as compared with migraine sufferers. But vestibular migraine sufferers often report no headaches; go figure.]
The vision issues along with new sound sensitivity and light sensitivity increased, as well as tinnitus that is sometimes a daily hell of about 6 out of 10, sometimes only a 1 or 2 on a scale of 10. On the worst days, 8 or 9 out of 10. Barometric pressure seems to be a factor. Late afternoon often the worst tinnitus. If I don't get to bed by 8 to 9 pm, I am a mess the next day. If I have an exceptionally busy day, I suffer severe fatigue for one to two days afterward. Newest ENT thinks Meniere's Disease morphed/is morphing into Vestibular Migraine.
NECK pain developed in intensity and frequency. Chiropractor (I am trying chiropractic treatments for the first time in my life this summer) is helping a little.
My symptoms have not yet aligned clearly with any definitive diagnosis or treatment plan.
I no longer drive (3 years now). I can't tolerate loud noises, wear BOSE Quiet Comfort noise-canceling headset or concert earplugs when someone is washing dishes or vacuuming or has the radio on (or I leave the area).
I gave up music.! Once in awhile I can tolerate a few songs (for whatever reason, Tracy Chapman's voice, using my SHOKZ bone-conduction headset on the lowest possible volume setting is sometimes tolerable. Most of my favorite music from the past is no longer pleasurable to listen to even on the lowest possible volume.)
My phone is on the lowest possible setting and it's too loud. I adjust the brightness levels lower frequently. I avoid stores. I avoid crowds.
What I thought would be my retirement pastimes are all proving to be difficult challenges.
Yeah. Life-changing. Constant adjustments. Foregoing so many outings and activities that I thought my life would be full of. I missed my 50th high school reunion, as well as my husband's. I tried to attend a wedding reception and had to leave within 5 minutes of the band/DJ starting.
My son-in-law is a sound engineer for the US Army Band, Pershing's Own, and I have not seen him in action (haven't attended a concert) for 3 years now.
Life-changing. Certainly there are many others suffering far worse, but as it is said, "pain is relative" / "grieving is different for each of us" and so on. I am learning to adapt, learning to let go, not always liking myself for how I am dealing with this journey.
Random oddities that have been informative/helpful reminders along my journey include:
Water: as soon as ANY symptoms appear, I drink 2 to 3 glasses of water. I drink LOTS of water, more than seems normal. Every day.
Tongue! I had no idea (vestibular therapist taught me this) that the position of your tongue while resting was very very wrong when I was first diagnosed, and when anxiety builds or episodes recur, I pay attention (my tongue tends to 'lock' behind my bottom teeth instead of resting loosely behind and not touching my top teeth).
Core! Posture! The more I do to improve my core strength, the weaker my symptoms are.
Posture... just this week chiropractor mentioned that she thought my face was resting back a little farther, closer to where the alignment should be. What??? This was the first this had been mentioned to me, but your a lot of my neck pain may come from this, so now I try to adjust/check several times a day. Did you know that your ear holes should line up with the center of shoulder seams? Mine are about 2 inches off, aligning with my clavicle. I have to look in a mirror and put my hands on my shoulders to hold them still and really focus to push my face/head back so that the alignment is better.
[There are many images online to illustrate correct posture alignment -- chin flat/level with the floor, ear holes aligned with center shoulder seams, shoulders back (touching the wall if you are standing against a wall), and so on]
align ear holes, chin up so level/flat with floor, shoulders back, tongue where it should be, breathe. . .
Breathe.
I'm still trying to learn how to be content with these new life restrictions. It is hard for friends to understand why I say no to so many invitations. Many occasions my husband will go/attend without me. Some outings are failures, but some prove enjoyable. It is hard. It is hard for family and friends too.
I try to push myself to try new volunteer commitments. Because I'm not driving, I try to find something close to home so it's not too much of a burden for Warren to drive me to and fro. Giving to others helps me focus less on my gripes. Some endeavors work for awhile, others longer.
Not being able to 'bobble-head' (bend over repeatedly, or move my head to look side to side) without vertigo/losing my balance) means I can't garden as I used to, can't do pressed flower art as I used to, can't read as I used to, can't handle Zoom sessions as I used to (I taught online, full time, for over 10 years. That's impossible for me now). Life is different.
There are ways to adapt if one is creative, and luckily that's an attribute frequently used to describe me.
My best wishes to all struggling through something similar, or struggling in a different way, and I hope something in this long post proves helpful.
