I’m new here but have been a lurker. I have had PCOS since I was 17. At around 30 I was diagnosed with Sjögren’s syndrome. In the same timeframe I experienced a BPPV episode.
Over the years I have been on and off of birth control but with a PCOS when I come off my periods are around 12 days long, I bleed extremely heavily and they come without warning.
A year or two ago I started getting bad migraines on my period. It felt like they were on one side of my head shooting out of my eye. I saw a neurologist who told me that I had migraines and didn’t have to come off the pill. Note that these migraines only happened during the placebo week.
I saw a new OB who told me that new medical research suggests there is no medical reason for having a period and I could continue with my low-dose combined pill. This took care of most of the migraines.
About a year ago I started feeling like the floor wasn’t solid under my feet and the room started to look like it was moving at the corners. I went to a specialist who told me I have MAV.
I was treating it naturally (icing my neck, no caffeine, no alcohol, low dairy, aupplements) but the attacks got worse around Christmas when I was stressed and then again after my 27 year old sister died. There has been an ongoing police investigation Into her death and I have had about 3 episodes since she died in Feb, 2 in the last month.
I do love my sodium and sometimes pick up a salad from Wendy’s because of my job. I am also overweight.
Since the pill seemed to help I have been reluctant to go off since my daily life will be a living hell and as my ob told me I will be at 100% risk for endometriosis. I am wondering if any of you went off the pill (low dose) and if that really helped that much or if I should chalk it up to stress/diet. I may not be able to function to go to work if I come off the pill and may go back to classic migraine.
For reference, my mom has MAV and has not been on the pill.
Edit: I am on 600 mg gabapentin, Plaquenil, & klonopin 25 mg as a rescue medication during bad attacks. My pill is Yasmin