Dysautonomia, Vertigo - Epilepsy?

[DizzyGirls]

Has anyone ever heard of a condition called "epileptic vertigo"? My daughters have EDS type III, Dysautonomia, and severe vertigo. I googled Vertigo and Epilepsy the other day and stumbled across some articles on it that also included people with autonomic issues. I know there are some "dizzy" people on this site that have suffered through vertigo as we have...just thought I would throw out the question and see what you all know!

[statesof]

I don't know anything about epileptic vertigo, were your daughters diagnosed with epilepsy? I personally get migraine associated vertigo, and sometimes with POTS my senses can be really sensitive to lights and sounds that I feel a sense of disorientation from it.

[DizzyGirls]

No, they haven't been diagnosed with epilepsy and my oldest does have vertigo with her migraines. But, the youngest does not get migraines and their vertigo is triggered by these strange things like flashing lights, booming sounds, busy patterns. The seizures would then be the vertigo. They've been diagnosed with Dysautonomia and they each had a TTT done at Stanford with a positive for POTS, also. The one thing that has stumped all of these very knowledgeable doctors is their vertigo and how it is triggered. This seems to be a fairly new area of epilepsy with not a lot of doctors being familiar with it and also agreeing. In one article I read that a lot of the subjects that they were studying in regard to the epileptic vertigo were adolescents and they felt there was also a connection with those people and Dysautonomia and POTS. I'm grasping for straws, I know, but it's the only area of my girls that has yet to be pinpointed and treated with success. They are being patched together right now.

[SarahA33]

Hmm..

There are various Aura's that can be associated with Epilepsy. One of them is a visual Aura. Flashes/bright lights, zig zags, seeing spots, disorientations of the size, shape or distance of things. Auditory Aura's, like Ringing/buzzing, or muffling in the Ears does also occur, as well as Autonomic Phenomena, my epilepsy specialist said Heart Rate, Increased Sweating, Goosebumps, and Nausea all can be an aura. A lot of these auras are migraine related too, but I know what you mean about basically exploring all avenue's.

Have they ever had an EEG? Just throwing it out there, the difficult part with a "scheduled" EEG is basically if they aren't symptomatic at that particular moment, it may not necessarily be positive. There are portable EEG's that can be worn for up to 7 days.

Take care,

Sarah

[DizzyGirls]

Sarah,

I really don't know much about epilepsy, but the auras you listed are all too familiar to mine and my oldest daughter's migraines. What's weird too, is that she gets an aura (vertigo) before a migraine begins, but can have the vertigo triggered by an outside source without it developing a migraine. For instance, a neighbor was having insulation blown in their house and there was a generator/compressor, something of the sort, in the van and the sound was so low and loud that she and her sister could feel the sound waves in their heads and after a minute or two the vertigo started and was quite severe until I was able to get them out of the house and let it calm down. Took a few hours, though. Same thing happened when an ambulance and fire engines came next door for our elderly neighbor. The flashing lights immediately triggered their vertigo and had to move to a different room where they couldn't see the lights. It would almost seem as though sometimes the vertigo is the aura and sometimes it is the result of a trigger.

I would very much like for them to have an EEG done. I'm trying to get up enough courage to approach our neurologist and bring this up. He and I often don't see eye to eye and I'm a little apprehensive. My oldest actually wore a portable halter monitor for 12 days recently. I think it was called a Zio patch. Sounds similar. Might be a real eye opener.

I know this is sort of off topic, but thank you very much for your insight into this. I know that you have a form of epilepsy and it was mentioned in one of the medical journal articles that I read that there was suspected a connection to people with this and Dysautonomia. A great doctor once said that the mothers would diagnose their children and I think it is because of all of the people in this group and others who are willing to share their medical histories so that we mothers can find out what is wrong with our children (and ourselves!).

[SarahA33]

There is a flashing lights portion during an EEG that I just had done. It's awful. 

Why the hesitation when bringing it up to the girls' neurologist? Are you worried he may dismiss it because it was your idea and not his? I come armed with research articles when I approach my doctors with new ideas. He should be open to hearing you out. I know you've mentioned in the past that they have a good primary care doctor who addresses all of your concerns, maybe you could start with him. Then, when talking to the neuro, lead with the foot, "The Primary doc and I spoke about this.." etc. etc.

[DizzyGirls]

I brought this up to our primary care doc today, in fact. Had to take the oldest in again for what we thought was a yeast infection. This time the urine sample came out positive for UTI. So here we go again. At least it showed something. I threw the epileptic vertigo out there to him and he thought it was a longshot, but that he would think about the EEG. He did comment, the girls have never had an EEG?? I said, nope. I told him that we had done everything else, but that. He said, hmmm, I'll think about that.

What do they do during an EEG?