First acute balance issues : 10 years ago I had spinning vertigo for like a week and then never again. This last time started Jan 2018, was pumping and starting getting dizzy. It was not all the time, and then I entered the chronic phase 24/7 rocking plus other symptoms (from headache, to space out feeling, ears clogged, etc)
Number & duration of acute phase(s) : I would say I am still on it so 16 months.
Any suspicious physical event/trauma leading up to dizziness : Nop, it was 4-5 months postpartum, coincided with my period coming back
Start of chronic phase : Feb 2018
Age at chronic onset : 37
Started medication : venlafaxine on May first (I tried zoloft for a month, bad decision, led me to a major anxiety attack). I also had a 5 day steroid pack to break migraine cycle (I think it contributed to the anxiety attack)
Stopped medication : Still on venlafaxine, 150 mg
Number & type of consultants seen to date: Internal medicine, neurologist (who diagnosed me), otoneurologist (confirmed diagnosis), and psychiatrist/ psychotherapist to manage anxiety / depression
Diagnoses received (one I’m “running with” first): migraine associated dizziness
Medications used successfully for MAV: Venlafaxine
**Failed medications for MAV:**Zoloft
Non-pharmalogical treatment tried which helped : Not sure if helped migraine but helped my mental health, accupuncture, cbd oil, physical/visual and vestibular therapy
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified : none really
Any hearing loss in either ear : nop
Persistent or intermittent tinnitus and character : intermittent, high pitch on right ear, and white noise on left ear (this started during pregnancy)
Other chronic conditions I’m suffering from : nop
Medication I’m taking for other conditions : none
Any personal history of migraines :just that vertigo episode
Any family history of migraines :parents, siblings, brother has it with spinning vertigo
Any history of ear problems :nop
How did friends, family, and doctors react to your symptoms? : Mhhh good question. My neurologist and psychologist were the best, validating my symptoms and feelings. Psychiatrist I think thought I was getting crazy. My husband was mad at me at the beginning, then very very caring and now seems that we have adopted my dizziness as part of the family and he keeps encouraging me everyday in every aspect of our life. My extended family were very judgmental about me taking an antidepressant and I had to really ignored them in the peak of my crisis. Now they are judging me for gaining weight! I keep trying to ignore them. Now that I think about it, I am furious that they don’t realize how much I have suffered with this condition and that they only judge what they can see. Ok, vent over.
Today a year ago I felt dizzy for the first time, after pumping. I thought it was the lack of sleep and food (which for sure contributed), but a few weeks later the rocking sensation stayed as part of my life 24/7.
After going through a lot of symptoms, pain, anxiety and depression, alongside other personal and professional challenges, and two meds, I can say that I am living happy and almost symptoms free. Venlafaxine has helped a lot with everything. Currently I am at 150 mg, I think I will stay there at least for 6 months more before I try to titrate down a bit. I might need to take the med for a long time so would like to be on a lower dose. I am still rocking but not all the time and not so intensively. I am pretty much doing all I want to do, I even had a glass of red wine on Christams Eve! And we hosted dinner and I shopped and cooked for all the guests. It is not always comfortable but it is not paralizing me. I try everyday that this condition does not define me, and rather, I am trying to be positive about life so that even if I don’t get back to my 100%, I am not dreading it anymore.
For all of you in the middle of the recovery, please know that it takes time. @flutters said it correctly the other day, it takes as much time as a concussion or brain injury. My vestibular rehab told me that all my symptoms were similar to a concussion, so be patient and kind with you. Don’t think on the things you’ve lost, but on the opportunities this condition provides. I have become more humble, compasionate, thankful, thoughtful, easy going, less stressed, mindful, etc. I enjoy my son and being a mom, and enjoy sleeping. I love eating and taking long showers. I like teaching and hate admin tasks hehe. I’ve gained 10 pounds after loosing 18 pounds due to not being able to eat. So, a normal human being. Thanks to all my friends here that have helped me through the process, particularly @Onandon03, @turnitaround, @flutters, @GetBetter, @ander454.