I posted this in a different section and didn’t get any responses… so I thought I’d give this section a try. Any thoughts for me??
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
I fully believe hormones are my biggest migraine trigger.
Check out this other thread for info and some links to other sites for information: http://mvertigo.cloudapp.net/t/hormones/7185
It’s a really frustrating disorder and I completely understand and sympathize with where you’re coming From.
Hi Laura,
Thanks for the reply. I think hormones are a problem for me too. But I really am not 100% sure what to do about it. Sometimes I wonder if it will just take time for my body to adjust to have higher levels of estrogen in my body again. I have never had any issues with hormones and the dizziness before. I could never really figure out triggers before. I would go months and months, even a few years initially without any problems. I can only assume that the drastic change in hormones over the last year has uncovered something else that bothers me.
What have you tried to balance your hormones? Has it helped?
Joy
I am really interested between the link between hormones and dizziness and have asked several specialists about it who have given me different answers. I never had any major issues until I went into early menopause at 39, apart from dizzy spells when I tried and gave up birth control pills in my twenties. My main symptom is the rocking and imbalance although there is an element of positional dizziness too. I may have had either labs or VN according to different docs, I definitely had BPPV for over a year at 38-39 and was suffering from stress, anxiety and overwork at the time that it morphed into MAV.
One neuro otologist said it was to do with high oestrogen and I should try HRT but another one said definitely don’t as it could make things worse. I recently got round to reading the Heal your Headache book, which I know is some people’s bible, but I was really disappointed that he listed hormones on the list of factors that we can do nothing about. I know that after stress it is probably my main trigger. On the plus side though he wrote that most women who first experience symptoms around peri menopause naturally begin to improve significantly after 5 years or so. So just another 2 years to go for me maybe.
I do wish there was more research into this and that different specialists could work together to solve these connected issues and to try to look at the whole person. Most of the doctors I spoke to were completely uninterested in the fact that my periods had stopped and one of them told me it was all down to stress and they will come back one day. Nonsense.
I really feel for you as I know how hard it can be to get through to docs when you have more than one problem but they just want to pigeon hole you. I hope the diet helps too.
Hi Nicola,
I’m sorry to hear about your symptoms as well. It sounds like we have similar symptoms. I have the constant rocking/swaying sensation. There are times it gets better and then it gets worse. I have had these issue for 15 years or so and they have always come and gone. The first bout was for about 6 months before it started improving. Then it has come and gone for days/weeks more times than I count or remember. But it has always gotten better at some point. Then I took birth control and it’s been a struggle on and off since then.
I tend to buy into MAV more than any other diagnosis as this is something I have battled for a long time on and off. And from what I have heard you don’t have relapses from Labyrinthitis. You get it once and once it improves it doesn’t come back.
It’s so complicated and I think many symptoms overlap between diagnoses and that is why the doctors are having such a hard time with it. I wish I knew what to do about the hormone issue. I just hope that things improve over time as my body gets used to have these levels of estrogen in my body again. Interestingly I have taken birth control many many years ago and was on it for at least 1 year without any problems. No dizziness. But at the time I took it to prevent pregnancy. This time it was to increase estrogen levels that were low for about 1 year. It’s confusing to me…
Joy