Hello, I am a newbie here. I have been suffering with what doctors are calling vestibular migraine for about a year and a half. I have had all the testing for scary things and the only positive result has been sleep apnea. I am currently in the process of obtaining a CPAP. My episodes typically consist of difficulty with busy visual fields-supermarkets, the refrigerator, driving, patterns, all bright lights and colorful objects seem too intense, confusion, lightheadedness, headache-not severe, pulsatile tinnitus in the left ear, anxiety. My episodes last around 10 days typically and it is very distressing. I am a teacher and unfortunately just in survival mode when this happens. I am curious to know how long episodes last in others.
Welcome to the forum and sorry to see another sufferer.
I had attacks lasting up to 2 days and then would recover (return to baseline/trend, not fully recover) over a 2 week period roughly. Eventually the attacks just stopped. It surely varies a lot.
Extremely variable person to person. I did 72 hours for many years then it expanded to eight days. With both I could set the clock it was that exact and recovery would then become apparent and escalate quite rapidly. Completely clear in between times. Then unfortunately the between times started filling in with a few occasional symptoms then after another eight day attack the symptoms forgot to leave and really haven’t never left not for more than a day or so ever since. A not uncommon pattern I have since discovered though some just start straight into chronic, 24/7. So very variable.
I massively empathise! I left the teaching profession in the UK a year ago after 18 years teaching chemistry. I’d been meaning to leave for a while (about 5 years) and initially took teaching jobs in a range of different places to see If the place improved my work life balance (it didn’t). My symptoms had just started to emerge (I at first thought they were stress related-but clearly not) and that sort of sealed it for me- I have absolutely no idea how I would have coped with my current situation in teaching- it’s a very unforgiving profession when you are unwell. I’m lucky in that my current workplace is very much bothered about my wellbeing- they have made adjustments to my working environment (lighting and seating arrangements) and allow me to be flexible in my work practices. How are you coping???
Thanks for your replies. It is very difficult to cope. I am in the US and a special education teacher. A lot of my work is in small groups in my small classroom, so I am able to turn off one of my set of lights. Currently, I am in the middle of an episode. It takes a lot of self-regulation strategies (the same ones I teach students) to make it through. My headaches are not severe, but the visual symptoms are the worst. I can’t drive down a tree-lined street without almost having a breakdown due to the flickering light coming through the trees. This all began last October and has come out of nowhere. I am having a hard time believing it is a migraine as someone who has never had migraines prior, but after ruling out a lot of things, there doesn’t seem to be any other explanation. I find myself JEALOUS of people who have a clear diagnosis and I know that is really morbid. I am going to attempt to find a position as an instructional designer over the summer, but not quit my teaching job unless I find something. It’s hard because I have been teaching for 17 years and I love my job. As a teacher, you have to “perform” for 7 hours and you can’t give yourself a break for 10 minutes let alone 10 days for a migraine. I wonder if working from home as an ID would be more forgiving since I can take a 5 minute break if needed. I am very glad to have found this site because I have had some very dark thoughts about wanting to continue living this way. It is nice to know that there are others like me.
Forgot to mention that I also have 4 kids who need to be driven everywhere. My husband works late so it’s just me all the time. So hard. I wish there was a solution. I am taking Verapamil. I have tried antidepressants (Ami and others), but they give me more anxiety. I have also tried Topimax with bad side effects. Currently also taking a Xanax at night to help go to sleep.
Sounds to me like you are living in a very stressful environment which most probably has contributed to your condition and, if continued, will keep your condition running for the foreseeable future. I think your brain which cannot actually speak to you is trying to communicate its displeasure. Somethings need to change. You need to discover and greatly reduce the triggers which are going to keep the condition running. Living under such pressure is obviously probing the red rag to the bull. Talking to people on here I’ve found those that do best take time out to recover. It’s much a question of adapt to survive I think you’ll find. I would imagine teaching from home would reduce many triggers for you. Certainly worth researching.
I know the JEALOUS feeling. Its part of the ‘Why Me’ symptom that goes with chronic medical conditions. I remember being envious of people I could see walking past my house when, even on a sunless day, I was so light sensitive, I daren’t open the curtains yet alone leave the house and there they were wandering about without so much as a hat on and I was wearing dark glasses and a sports sun visor indoors.
Verapamil can take a good while to work and I suspect like the beta blockers needs you to hit an effective dose first. Might be worth asking if an increase is in order. Failing that ask about beta blockers as you have eliminated a lot of the other preventatives but don’t seem to have trialled those. I’m sure easing up on the stress should help immensely. As you’ve already found MAV’s a hard nut to crack and you to need to throw everything at it.
This is me as well! I just started with symptoms last spring and had no idea what was going on. At the time I was running my own business and taking care of my kids FT since my husband was working over seas. We have very similar symptoms. At one point I could barely drive because I got motion sickness so bad. All the docs have told me that my age and hormones are probably a contributing factor (I’m 41). Meclizine, and phenegren helps me a lot. I was doing the emgality shot and tried Botox last month. I’m sad I did. I have not had good luck with Botox so far and its put make back in to daily symptoms. It’s so hard too because no one can see my symptoms so I always worry no one believes me. And I’m so sick of complaining about it! I just want to feel normal again.