First acute balance issues: July 2020
**Number & duration of acute phase(s) Twice so far. July 3 weeks, October ongoing
Any suspicious physical event/trauma leading up to dizziness: No
Start of chronic phase: October 11, 2020
Age at chronic onset: 37
Started medication: Propranolol
Number & type of consultants seen to date: One: Neurologist
Diagnoses received (one I’m “running with” first): Two: BPPV July by a Physio, Vestibular Migraine by the neurologist.
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: I’ve started supplements Magnesium, B2, VitD, Coq10
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character: I would say very briefly. Like seconds sometimes but I have a fullness in my ear. I feel something in them.
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines: mentrual migraines for 15years.
Any family history of migraines: Dad, brother, grandmother
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?: Very supportive
(Your current state)
What’s Gone: (what symptoms you had but no longer get)
Spinning vertigo. This is how it started. Quite severe. I do have milder rotational vertigo now… positional. Although of course this could change.
What’s Ongoing: (what symptoms you still get)
Dizziness with head movements. Neck pain, down beating nystagmus. I notice looking in the dark bad. Hard to focus. Photophobia, vomiting and nausea daily.
My Worse Day Now: (description of the worst day you get now)
I’m not sleeping well as I’m propped up on pillows. Bit of insomnia. Extremely nauseous and I vomit first thing. Head cannot move even the slightest. Room spins, particularly when lying down. I get up to vomit and walking into walls. Extremely fatigued.
(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)
- It all began when …
- The first thing I did …
It all began in July of 2020. I went to bed perfectly fine, woke up, turned my head and bam … the room spun 300 miles and hour. Moved my head the opposite direction and same thing. Very scary. I thought I had low blood pressure. Felt terrible all day. Tried to go to sleep that night and same thing when I laid down. I was vomiting everywhere… went to ER and they diagnosed BPPV and did the Epley. This made my vomit for hours. They gave me Valium and anti nausea pills and sent me in my way. I went to a vertigo Physio a few days later who noticed I had downbeating nystagmus which she thought was odd for BPPV. Still, she explained that I still had vertigo on the Dix Hallpike and treated it for anterior canal conversion. It slowly went away after about 2.5 weeks.
Totally symptom free for 12 weeks.
Then, October I was leaning over reading a text message on my kitchen bench, and saw it spinning. I tested it again by moving my whole body to the right, and the room spun a bit.
I felt fine enough for 3 days though. To a point where I even told my husband I might not need to go get the Epley done. I went anyway, and again she noticed downbeating nystagmus just my sitting up. She did however see classic BPPV too so did the Epley. This is where it all goes pair shaped. From then on, I have had constant dizziness, vomiting, loss of appetite, head movements - particularly down - cause me to feel yuk. I feel it in the back of my head. Did not sleep at all that night. Walls jumping back and forth. Vomiting.
I went to the doctor in the morning, who gave me more nausea tablets, which do not work - and a referral to neurologist. I was a mess. I luckily got in within the week as there had been a cancellation. I had a CT scan done prior.
The neurologist did a series of tests which were horrible. I was focused the whole day not to vomit. He pretty promptly diagnosed vestibular migraines, said to take 4 weeks off work and put me on propranolol. Start at 20mg a day, and up by 10mg each week till I reach 60mg. Ordered an MRI which is in December.
Mum came to stay, and is still here to help me with my daughters. It’s now 2 weeks on, and I feel sooo terrible. I have zero energy. For example, today, I could not muster the energy to pick up a pen and write words on a page.
I am not sleeping. Last night I woke at 1;15am and could not get back to sleep. This is often.
I have never felt as depressed I have in the last two weeks. I am crying constantly, vomiting nearly every day, dwelling on the future, cannot take care of my children. I can’t seem to see any positives. As much as I am trying - and I’m really trying.
I got another migraine yesterday which wiped me out. The pain is not as severe as usual, but the balance and everything that goes with it are terrible. FYI - I was a regular mentrual migraine girl once a month. Taking a Maxalt triptan worked a treat. I could get on with life.
I am relying on google and forums for answers. Like why am I vomiting? The medication or VM? Will these side effects of extreme fatigue ever go? Is this the right Med for me? Will I ever feel better?
I’m writing a list of questions tonight to email my neurologist as I don’t see him again for another 6 weeks.
It’s all very overwhelming and I know I’m at the highest level of stress I’ve ever been. I’ve dropped 5kg and I’m a really skinny person as it is. I can’t afford to do that.
I’ve seen a psychologist but I’m not sure she is helping yet. I’m worried about returning to work - high stress and demanding. Being a good mother and wife etc.
So, I’m really struggling right now. Nobody has this disorder that I know and no one really understands it.
I am desperate just to feel some level of energy and better within myself.
I realise I am early days but I feel like I’ve walked through the gates of hell, the doors have closed, and I can’t find my way out.
I hope to update this with more positivity. And I’m sorry if this sounds all too negative. I know I have to get my mental state better, but I wonder if it’s the drugs amplifying my already distressed state.
You all seem so supportive of one another and I hope to be of support to you as we travel through this together.
Start of Journal
Today I …