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Since I was pregnant with my first child, I’ve had bouts of vertigo generally one a month, but sometimes as frequently as every day. I have nystagmus, full rotational vergtio, and each episode usually lasts 3-5 minutes. Last week, however, I was spinning very severely for about 10 minutes - which is very frightening if you are alone and even worse if you have a 3 year old and a 9 month old. I ended up vomitting in front of my children, which I have never done before. I know that all of you understand how absolutely debilitating this can be.
I’ve been to a neurologist and an ENT over the past 3 years, had 2 MRIs, an ENG - my current diagnosis is Migraine Associated Vertigo. I’ve moved to a new city and have an appointment soon with a new neurologist who specializes in dizziness.
I’m currently nursing so any medication is out of the question for now, but I was hoping some of you might have some insights on what medication or other treatment has worked for you. I have virtually eliminated caffeine and bananas. I know that I’m more likely to have an episode if I am tired or stressed (which happened last week), but I have not really identified any other food triggers.
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Welcome to the forum, but I am sorry you need to be here. Your questions are good ones, and I can certainly understand your frustration in regards to your children. I have twins. a boy and girl. 2 yrs old. This condition is tough to manage with them, but it IS manageable, and it is my experience that once this condition is sorted out, The fear diminishes and you find that you can do things that you never thought you would be able to. So hang in there, you are in the right place!
As far as which medications work, well, they all work (various anti-seizure, anti-depressants, blood pressure med and calicum channel blockers) so it’s a matter of finding out which one (or combo) works for you. Everyone here is different and will react very differently to meds. some people do very well on a med which encourages others to try it, only to do very poorly on it so there are no guarantees or absolutes. GENERALLY, for “rotational” vertigo associated with migraine, verapamil has been reported to work very well. topamax is another popular medication which happens to be what worked for me, and a few other people I know, but they all “work” to some capacity.
As far as doctors go, if you can find a good neuro-otologist, that might be a better choice than a neurologist or an ENT, as these doctors specialize in migraine/vestibular disorders and are the best equipped to deal with the problem. Some neurologists are very good, however, so it depends on who you go to. I have never been to a good general ENT, but I’m sure they are out there.
Cutting out the caffeine complete is a VERY wise choice, and will prevent rebound migraine. But also watch out for MSG. A good book to read is “Heal Your Headache” by David Buchholz as it’s a good introduction to migraine, the process of it, as well as how to generally manage it with medications as well as diet. Many forum members have found it useful.
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Sleep and stress seem to set off a lot of people here, including myself. Right now, those are the only 2 factors that really disrupt my 90% functioning level. Since I cut out all MSG and all caffeine, most of my triggers have been eliminated anyway. The only remaining triggers that I can’t avoid are light, weather, and a few misc. ones but I can control diet, stress (some of it) and sleep. The condition improves for many people. A lot of people here have had it bad for a very long time and many still do, but many will also tell you that improvements have been made. I had it VERY bad for about 11 months total now, but after 6 months into it, I started topamax and the rest of my program, and I went from functioning at 20% to 90%. I have most of my life back as a result. So, there is hope as I see it. I remember listening to success stories and thinking that will never be me. Eventually it was. But stress was a BIG part of it for me. Once I let go and stopped thinking about the condition all day, things gradually got better with the help of the topamax. Stress may not affect everyone that way, but it had an obvious effect on me. Again, welcome.