The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Dizzy Drummer Diaries-my dark passenger


#1

First acute balance issues : I have always been clumsy, so who knows.
Number & duration of acute phase(s) : Too many to count
Any suspicious physical event/trauma leading up to dizziness : I had epilepsy as a child
Start of chronic phase : 2018
Age at chronic onset : mid 30s
Started medication : November 2018
Stopped medication : still ongoing
Number & type of consultants seen to date: 1 amazing neurologist
Diagnoses received (one I’m “running with” first): Migraine Variant
Medications used successfully for MAV: Topiramate 25 mg, Cambia powder, Sprix nasal spray
Failed medications for MAV: none to note yet
Non-pharmalogical treatment tried which helped : CBD Oil, Magnesium, daily vitamin, HYH diet
Non-pharmalogical treatment tried which didn’t seem to help : N/A
Dietary triggers identified : still doing the diet but I think caffeine, dark alcohols, aged cheeses and possibly gluten
Any hearing loss in either ear : surprisingly even with being a drummer no
Persistent or intermittent tinnitus and character : no
Other chronic conditions I’m suffering from : consistent neck and back pain
Medication I’m taking for other conditions : none
Any personal history of migraines : had one migraine previously after eating local honey
Any family history of migraines : yes
Any history of ear problems : no
How did friends, family, and doctors react to your symptoms? I have an amazing family. My fiance is by my side. He takes me shopping on my bad days. He too gets migraines, just not the dizzy types. We call our house the “migraine house”

About Me

  • Dizziness has always been a part of my life since I can remember. As a child I was diagnosed with epilepsy, specifically Tonic Clonic Seizures. I have always been sensitive to lights and certain patterns. As a child my triggers included mini blinds, strobe lights, contrasting patters such as small black and white strips, lack of sleep, and hunger. I remember one morning looking at the mini blinds and having a horrible seizure. Needless to say my childhood was filled with dr visits, blood tests, MRIs, EEGs etc. I have always hated going to the Dr. Luckily I was able to take medication and control my triggers and seizures leaving me free of seizures at age 9 and with no medication by age 16. Of course puberty came and every time I would menstruate, it would leave me dizzy, tired and sensitive to lights.

  • As an adult I continued to be “sensitive to lights” I would go to concerts and stay in the back, or wear a hoodie to protect my eyes from strobe lights, during a work meeting I position myself facing away from mini blinds. I never wear bold and visually annoying patterns. I always wear sunglasses outside. I always equated my sensitivities to my previous history of epilepsy, so last year when I would sit in a meeting at work and I would feel dizzy I annoyingly assumed I had somehow not eaten enough, not slept, or brushed it off. until it got worse. Even though I was sensitive to certain things I still did many things. I would go dance at clubs, go shopping at stores, play videogames, I play drums…I’ve performed on a stage (with no strobe lights of course), go to the gym…all the normal everyday things.

  • Of course my first notable migraine attack happened during a 1:1 meeting with my boss. The aura, anxiety, head pressure, dizziness etc. I was able to leave that time unscathed but I felt my evil dizzy friend visiting more often…and this time it felt different. It became so bad that I couldn’t and still can’t attend meetings at my office, let alone go shopping for food, so I went to the Dr. Luckily I was referred to Dr. Purcell, who unbeknownst to me is one of the best in my area. Low and behold…migraine. I can’t say I was surprised because I had already googled the hell out of every ailment possible and of course I have had a love hate relationship with my brain and central nervous system so it was more of a “Oh you dirty bastard you’ve done it again!”.

Me Today
I’m trying to not make this too long. Me today. Well I’ve only recently been diagnosed. Been on the diet for 2 months. Some change for the better…but the weather has other plans. I think the hardest part of all this is who I am. I am a behavior analyst. I work with people with developmental disabilities and I spend all day assessing and taking care of other people and their behavior and making them better. I write behavior plans, I teach skills…I work long hours, I am a boss…I fix things. Now I have to stop and fix myself, but as we all know easier said than done. The 7 stages of grieving are a real thing and since I am stubborn I tend to always fall between denial, depression, and acceptance.

I violently track my symptoms, my sleep, what I eat, and what I did during a day trying to find the antecedent to my dizziness thinking “maybe if I stop drinking coffee forever I will wake up one day and I won’t be dizzy anymore” As a behavior analyst that’s what you do, you find the function of the behavior and you find a way to stop it…unfortunately that doesn’t work with your brain. The diagnosis has put my wedding plans, talk of possibly having a baby, application to a PhD program ( I"m a massive overachiever) all on hold. So my goal this year is to continue doing what I was going to do anyways…live life. However, I have to learn that I can’t go at the pace I used to go at…did I mention I am stubborn.

I have seen good days. 10 days longest with no symptoms and one day I went into 4 stores with NO theraspecs on…just my bare eyes. After months of anxiety over going to the store, it was nice to go in and look at all the beautiful makeup (I love makeup). I am also so thankful I have a wonderful job that is accommodating to my needs. I sill play drums, go out with friends, and enjoy life…as long as there are no fluorescent lights…for now anyways.

Anyway, that’s me in a nutshell. I am hoping to learn from others in the group more experienced than me, and to bring my silly humor and knowledge to the group.- Vanessa


#2

Enjoyed reading your summary Vanessa, although can hear your pain and suffering between the lines. I found it interesting you write about how your job is about finding solutions and fixing things. One of the hardest things with MAV I find is to accept we have no or little control over it. I wish you a good year, full of things you enjoy doing, and a good further recovery.


#3

Thank you Lucy. This group had been invaluable to me in so many ways. I really enjoy reading others stories and the companionship the group offers. Although I am still in the sad phase these days, joining the group definitely helps me feel less isolated. What is neat is that I have made more friends at my work because of my diagnosis and advocacy for better lighting in the office. I’ve found many of my coworkers suffer from migraine due to the lighting. I’ve gotten a permanent work restriction so my coworkers are eagerly awaiting new lighting at the office.


#4

Such a good idea to advocate for new lighting! It’ll make a difference to many people:-)