My life journey as a cancer survivor can pivot periodically, and sometimes I’m left dizzy, usually figuratively but lately quite literally. The last 2 months I have had vertigo and will be getting a brain scan on Friday to make sure it is truly a vertigo disorder instead of something more serious.
Vertigo and BPPV
So far, all signs point to what is called BPPV.
“Benign paroxysmal positional vertigo (BPPV) is an inner ear problem that causes short periods of dizziness when your head is moved in certain positions. … This dizzy sensation called vertigo usually only lasts a few seconds up to a minute, but often makes you feel like the room is spinning around you.” -Shannon L. G. Hoffman PT, DPT
In BPPV, calcium crystals become loose and go into one of the semi-circular canals. When you move your head a certain way, the crystals move inside the canal, irritate the nerve endings, and you become dizzy.” -Shannon L. G. Hoffman PT, DPT
BPPV is treated with simple neck maneuvers usually performed a physician or physical therapist designed to move the crystals from the canal back into the area where they came from. The most common maneuver designed to fix the problem is called the Epley maneuver, which involves moving the head through a series of 4 positions, staying in each position for about 30-60 seconds. Another maneuver is called the Semont maneuver, which involves rapidly moving the body from lying on one side to lying on the other.
BPPV can return once you have had an episode, and often the treatment is ongoing.
My Story with Vertigo
I have had vertigo since early January, and it is now late February. I noticed dizziness when I would get up out of bed in the middle of the night to use the restroom. My gait would be off and the room would shift almost in waves. I also noticed it when horizontal and I would turn from one side to the other while falling asleep. It is a strange sensation to be dizzy while laying down!
I got online and found the Epley Maneuver on YouTube and tried it. If you watch the linked 2-minute video below, it will show an animation of the crystals in the inner ear canals, and what the head maneuver looks like. It also shows what the eyes do during the maneuver, called Nystagmus.
It is where the eyes move uncontrollably and rapidly either side to side or up and down. Mine did this during the maneuver, and freaked my poor daughter who was helping me out!
The nystagmus only lasts about 10 seconds, but it is quite off-putting both to me and to whoever is watching! I did find some relief in this symptom, knowing that it is a classic sign of BPPV. Not that I want BPPV, but I will take it over a brain tumor.
Yes, as a cancer survivor, your mind must go there, and I will talk about why, later.
These maneuvers worked eventually in January and I had about 2 weeks of no symptoms, but the last 2-3 weeks symptoms are back and are not responding to the Epley Maneuver.
The last 4 days have been pretty brutal, with pressure on the right side of my head, nausea, dizziness when I bend over or move my head in certain angles, and an unsteady gait that makes me feel pulled to the left while I walk.
The symptoms were at their worst on Tuesday, I felt like I had the flu and felt off and nauseated with pressure in my and head and ears ringing.
I decided to clean out my freezer to feel productive, and since ours is the type that is a drawer, every time I would bend down to get something out of it or wipe it out, I would come back up dizzy. I ended up grumpy, but my freezer sure looks good!
The last 4-5 days I would just sit at my computer and kinda stare at it, unable to focus very well. Creative work and writing were not happening, and that concerned me, as it is my job and my favorite way to connect with you all!
Instead, I would do light cleaning or cooking. Needless to say, my house looks pretty good and my teenagers are well fed!
I am happy to say I now have a plan thanks to my doctor appointment yesterday, and this is the first day in a while where I feel clear and motivated enough to do some more creative type brain work.
Diagnosed with Suspected BPPV Due to Nystagmus
My Oncologist did some simple positional test on Wednesday, and when she had me follow her finger back and forth/up and down, my eyes had movement (nystagmus) when she would go to the far left. I could not feel it, but she could see it.
I could feel an uncomfortable pressure on the right side of my head and ear when I looked far left, and I felt nauseous.
She thinks it is BPPV due to these eye movements and my symptoms, and I am relieved to hear that.
I now know why I get dizzy while curling the side of my hair, as my head is slightly turned but my eyes reach left to look in the mirror. That movement with my eyes to the far left while my head is at a 45-degree turn brings on a dizzy episode.
It is interesting to notice what movement can make my symptoms worse.
A Brain Scan Because I’m a Cancer Survivor
I am an 8-year stage 3c breast cancer survivor. My type of breast cancer was lobular, and if it reoccurs, it is often either in the stomach or the brain. Because of this, we are very careful with any symptoms that could point to either of these things, hence a brain scan for me in two days!
I am so thankful to be this far out from diagnosis. What a gift! I am also thankful my Oncologist is being careful with me and doing what it takes to rule out anything more concerning than BVVP.
The Fear of the ‘What If’
Of course, this brings on some thoughts of “what if” and fears. This is normal, but have been doing this survivor thing for quite a while and have had some practice in dealing with fear, of living in the ‘what if’ and the wait, and feeling the ‘scanxiety’ that scans can bring.
It is not that fear does not come, but I know what I need to do when I start feeling it take over my thoughts. I am prone to anxiety and have lots of tricks, tips, and tools for fighting worry and fear.
I have had other survivors ask me about fear, how to live in the fear and not allow it to overtake, and because of this, I have a post in the works that will cover the subject of fear as a cancer survivor.
For now, I will say, when life feels like it is spinning, find the focus point while you pivot.
My focus point that never fails me is my Jesus. He promises to never leave me, to always be with me and died for me so that I can be with him someday, which gives me hope eternal.
My friend Anne wrote me a note this morning. She said a simple comment about how I am always on steady ground, forever and always. I knew she was talking about Jesus, who is the ultimate rock on which I stand.
Update on my Brain Scan
UPDATE: IT IS FRIDAY AND THE BRAIN SCAN HAS BEEN CANCELLED FOR AT LEAST 3 WEEKS.
I had a very enlightening appointment with a physical therapist specially trained in vertigo and vestibular disorders on Thursday. Because all signs point to a more rare type of BPPV, and because I passed the tests she has to offer of the central nervous system (this is good) my Oncologist has decided to put the brain scan off for 3 weeks.
I will be having vestibular physical therapy 3 times a week for 3 weeks. If I find some relief of the symptoms I am having from this, then we won’t do the brain scan. If I don’t then we will scan.
I am so grateful that my symptoms pretty clearly point to a certain type of BPPV. It is called cupulolithiasis of which I will more than likely be writing about in a coming post.
My therapist said she “shook my brain up like a snowglobe” yesterday with all her maneuvers. She said I would feel brain fatigue while it all settles.
She also said my vestibular system is pretty off, which is like I’ve been riding roller coasters all day, which makes my brain quite tired.
This is why automatic work like cleaning and making food for my family has been easily doable, but creative work like writing this blog post and working on our budget numbers has felt almost impossible. This post took me days to write!
Finally, an excuse for typos and misspellings! Ha!
Tell me…have you ever had vertigo?
What was your diagnosis? What helped you when you had episodes?
I will keep you all updated in what helps me and if I end up having that brain scan. High hopes and prayers that I won’t!