History of vertigo and birth control

Hi all,
Iā€™m looking for any advice and some support about what has been going on with me for the last few months. I have a long history of vertigo (a swaying/rocking feeling 24/7) that did start with a sudden less than a minute room spinning episode when I was in college about 15 years ago. I felt like I was swaying and rocking for 6 months before it slowly got better. Then I was fine for years before the same thing returned a few years later. then i was fine again, and I havenā€™t ever had a major attack like that however I would get a few weeks of swaying/rocking sensations that I never could figure out what triggered it. I have been told I had labyrinthitis and I did have caloric testing which showed a 45% deficit in my right ear.

Fast forward to Januaryā€¦ I lost 35 pounds slowly over the course of a year and was doing fine. Except I lost my period. Iā€™m 35 years old and have had a pretty regular one until I lost weight. The doctors said I had low estrogen so they put me on birth control. I took it for 1 month without issues then I got the rocking/swaying back so I stopped the pill. Took about 1 month to feel better. Ever since then I have had issues with the swaying/rocking coming and going. I canā€™t seem to kick it anymoreā€¦ itā€™s freaking me out a little.

Iā€™ve seen a neurologist and an neurotologist about this and they both say this is migraine. I am on a migraine diet and taking magnesium and B12. The doctors want me to do it for 3 months then tell them if Iā€™m not better. So far itā€™s been on and off, but no improvement. Iā€™ve been on it for about 1 month.

My period came back about 3 months ago on itā€™s on and I skipped three months and it came back about 3 days ago. So my estrogen levels must be changing. I wonder if that is why my vertigo is so stubborn? Any chance my body will get used to these hormones and Iā€™ll feel better? I donā€™t knowā€¦ I donā€™t know what this is. Iā€™ve had doctors tell me everything from Labs, BPPV, menieres, and now MAV. I do have some tinnitus however it has never been associated with the dizziness. I got it before I ever had a flare of the dizziness. I just assumed it had to do with my screwed up inner earsā€¦ Maybe this is migraine relatedā€¦

sorry for the long postā€¦ I just need to vent to people who can understand
Joy

Hi Joy, my symptoms are daily, but always much worse around ovulation and my periodā€¦when progesterone drops. This MAV stuff all started for me a year ago, and the most likely biggest trigger for me is peri-menopause. I get long periods (9-18 days) and my ovulation is erratic after years of clockwork. My guess is you are experiencing the same. Hormone fluctuations and sudden changes are a known migraine trigger. Many Dr.'s say migrainers with aura should avoid estrogen containing pills b/c of the risk of stroke increases slightly.

As far as what to do about it, I donā€™t have a clear answer. Birth control pills can either worsen, help or do nothing for the symptoms. I was scared to try anything for months, but then 4 months ago after a set back I decided to try the progestin only ā€œminiā€ pill to theoretically even out some of the progesterone hormone shifts. It seemed to help all summer. I had a lot of improvements and was hoping this would be the icing on the cake that helped lessen my symptoms (I am also on a preventative, supplements and migraine diet). I think the improvements over the summer were more likely due to less stress. I am worse again the last few weeks as life has gotten busier again. I came on here again searching yet again about what to do, and just noticed your post.

I am pretty sure Iā€™m stopping the progestin. I donā€™t want to be tied to it for years if it isnā€™t dramatically helping me. I have some side effects: increased appetite and water retention, some mood stuff, gi stuff, breast tenderness. I no longer think the benefits outweigh the side effects or hassle of taking it every day. I forgot one night and it started horrible headaches, bloating, PMS symptoms and a heavy period. My periods still last 18 days the last 2 cycles.

I think I just have to reduce my ā€œtriggersā€ as much as I can through meds, diet, supplements, life style, avoiding loud places and florescent lights, etc. I am hoping when I am in menopause this will all ease up or stop for good.

All that said, I really am much better overall than a year ago. I went from constant severe rocking and dizzy and head fog and dysarthria and tingling and weakness on 1/2 my body to much milder symptoms that are more short episodes with obvious triggers (noise, lights, stress, hormones). I feel like I have some control of it now and can do a lot more.

I hope you get a lot of answers and reliefā€¦it sounds like vestibular migraine related dizziness to me, and I am glad you found knowledgable doctors to help guide you.

Luna (Jen)

Hi Jen,
Thanks for the response. I hope you find more answers and feel better soon. Itā€™s just weird that my hormones never seemed to cause any problems for me but after having such low estrogen levels for a year it triggered it with birth control pills. I started to feel dizzy after 1month of taking it (when my period was over on the pill). Also I felt this way after taking 10 days of progesterone which my OB gave me before I went on birth control to see if it would kick start my cycle which it didnā€™t.

My dizziness has always come and gone and after taking the progesterone I really didnā€™t link the two because it comes and goes anyway. I am have not tried meds yet, but Iā€™m contemplating it. Iā€™m going to try and stick it out a little longer and see what happens. This always has gotten better in the past and iā€™m hoping and praying for the same this time

Thanks for your help
Joy