History of vertigo and birth control

Hi all,
I’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 haven’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 January… I lost 35 pounds slowly over the course of a year and was doing fine. Except I lost my period. I’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 can’t seem to kick it anymore… it’s freaking me out a little.

I’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 I’m not better. So far it’s been on and off, but no improvement. I’ve been on it for about 1 month.

My period came back about 3 months ago on it’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 I’ll feel better? I don’t know… I don’t know what this is. I’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 ears… Maybe this is migraine related…

sorry for the long post… 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 period…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 don’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 “mini” 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 I’m stopping the progestin. I don’t want to be tied to it for years if it isn’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 “triggers” 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 relief…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. It’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 didn’t.

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

Thanks for your help
Joy