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Feb 29, 2016 · Chronic dizziness and vestibular migraines in Ear, Nose & Throat (ENT)

Hi Kim,

So sorry to hear of your problems with dizziness. This May will mark four years for me. In my case it’s definitely vestibular migraine. But, I think about the migraines and vestibular dysfunction as two separate issues most of the time as they so often don’t seem related. And, while I have always had issues with headaches, I never suffered from any type of dizziness prior to May 2012. The neurologist I see now (who is incredible) had me accept that the initial cause is something we’ll never know. I’ve seen a myriad of doctors and specialists and tried well over a dozen medications (at some point you just stop counting).

At this point I’d say my life is pretty good. There are good days and bad days, and it’s difficult for others to understated that when I say I always have a headache and I’m always dizzy, that I mean ALWAYS! I have young children that are very understanding and supportive. I do as much as I can with them, but they understand that there are certain things I just can’t do (rollerskating, skiing, bike riding – although I’m determined to conquer that one this summer).

Since headaches don’t seem to be an issue for you, I’ll try to limit my comments to dizziness. But, let me first start off with medications. All the medications are for migraine, which, once under control, should help with the dizziness (I’m a little dubious in accepting this as my headaches are significantly better now and the dizziness is still an issue). Botox every three months, antidepressants daily, OTC allergy medicine daily, prescription nasal spray for allergies daily, and allergy shots (I have allergies LOL).

Now, two specific things that have helped with my dizziness:

First – physical therapy!!! My goodness, I can’t tell you how much my life improved after working with a good PT that specializes in balance issues. The initial balance testing showed that my vestibular system was only working at 10% when it came to balance. After a few months of therapy it was up to 50% and I was feeling SO much better. It’s still a daily struggle, but no where near as difficult as it used to be.

Second – food. Once I started keeping track of how I felt after eating certain foods it became clear that what I was eating was a major cause of the dizziness. And it’s an ongoing process . Once I determined the major triggers I’ve found that it’s much harder to find lessor triggers (just discovered a new one last week). Here is my (ever growing) list of triggers: pork, citrus, caffeine, aspartame, chocolate, nitrates (so processed meats of any kind), nuts, bananas, vinegar (no condiments), dairy (processed cheeses are ok, think Kraft singles), red wine, brown liquor, anything with active yeasts (fresh baked goods, beer. I can have regular old Wonder bread), gluten, and tomatoes. Also, based on somethings I read at vestibular.org, I’m going to start monitoring my salt intake and overall hydration levels. That’s a lot of stuff I try to avoid. I cheat from time-to-time depending on how I feel. I have a very small reaction to gluten (that’s the one I discovered last week) so i don’t stress too much if I have some. But things like pork, citrus, and dairy are instant killers. There are things I really miss but found that I can live without them if it means I’m not so dizzy.

I hope some of this might help you. Good luck! I hope you have some relief soon!

Jeff

Nov 19, 2014 · Chronic Subjective Dizziness-CSD in Ear, Nose & Throat (ENT)

I started with sporadic symptoms 2 1/2 years ago. The dizziness became constant about a year ago. I’ve run the whole gauntlet of doctors and diagnoses. It’s just in the last few weeks I’ve learned of CDS, and it certainly fits with what I’m dealing with. The doctors have been treating me for “migraine with vestibular dysfunction”. I definitely have migraine issues, and some of the medicines have helped with the dizziness. But all the ones that have been effective (of course they’re all antidepressants of some type) make me unable to sleep. As in 4 hours a night of sleep on average.

There’s a doctor nearby that specializes in CSD. She’s board certified in neurology and psychiatry. My appointment is in about a month and I can’t wait to see her.

One thing that has really helped me is allergy shots. Things have been the worst in the spring and fall, times when my allergies are at their worst. The shots have definitely helped. Also, PT for balance helped A LOT!

All that being said, I refuse to give up. I have two young kids and refuse to accept that I can’t play ball with them. Or taking them skiing some day. Or ride bikes with them. There are so many fun things in our future. I refuse to let CSD rob me or them of those experiences.