This seems like a very supportive group which gave me the confidence to post. Im not really sure what I’m looking for, maybe hope? It’s scary that there seems to be no “cure” and that this is life-long. And please correct me if I’m wrong, as I’m still learning.
I’m in the midst of being diagnosed with what after a lot of reading and searching on my own, sounds like VM. I’ve been seen by my GP, ENT, opthamology, and most recently, a neurologist. I’ve also had many tests. My CT scan and MRI came both came back normal. I’ve had blood work, EKGs, and an echocardiogram. I’ve been to vestibular therapy once but they dismissed me because they said it was unrelated to my vestibular system (it clearly IS related). I’ve also had the full ENT work up with the rotational chair (hope I never have to do that again!)
I’ve been dealing with this since August. It all started when I got out of bed really fast in the middle of the night to tend to my son and had a syncopal episode. It was unwitnessed so it’s unclear if I hit my head or how I landed. The ER doctor diagnosed it as a vasovagal reaction to getting up too fast. Ever since then, I have felt this way. I don’t have dizziness in the sense of the room spinning but feel light headed. At first it was really bad and if I turned my head, I felt off balance or like I was going to fall. I was nauseous, had ear fullness and head pressure, and ringing in my ears. If I was sitting, I felt like I was falling. My head felt heavy. The first week was the worst and then it very slowly and gradually got better to the point where I was living my life normally (while still seeing all these specialists to try to figure out what happened), but I’ve not had a complete resolution of symptoms in the last 5 months. I don’t have the light headedness all the time. I’ve noted that I have it when I get up in the morning, sometimes in the shower (I’m guessing related to the heat) and it is always triggered when I’m around a lot of stimuli like in a roomful of people who are all talking. I also have worsening of symptoms around my cycle. One other symptom I’ve had that has never gone away is eye floaters. My neurologist was kind of stumped that they never go away.
Sometimes I have a headache, which has been mild, but most times I don’t have any head pain at all.
I got really bad again in late December. I reached out to my neurologist who had diagnosed me with vestibular “or” ocular migraines when I saw him. He didn’t put me on anything at the time because my symptoms had improved so much. When I reached out to him, he suggested I try a course of steroids and Keppra (for 5 days) to see if it would “break the cycle”. I felt a little bit better while I was on the medications. I honestly think it was just the steroid that was making me feel good but again, did not have a complete resolution of symptoms. After being off of them for a day and a half, my symptoms are showing again.
I have an upcoming appointment with a concussion specialist to rule out a concussion when I passed out. He felt the fact that my lightheadedness is triggered by a lot of stimuli is a concussion sign but otherwise all the symptoms sound like VM. If you’ve read this far, thank you. This leads me to a few questions:
-After reading through this forum, I’ve seen a lot of posts that mention seizures with VM. Do they often occur together or does VM put you at a greater risk for seizures?
-How do you drive with this? I’m talking for important appointments to get a diagnosis. My current symptoms would not put me at risk to drive, but my newest symptom is getting extremely motion sick AS the driver. I’ve never experienced this as I usually only get motion sick in the back seat.
-How do you go about finding a doctor in your area who can effectively treat you? It’s obvious my neurologist does not know much about VM and the treatment.
-Lastly, hope? Positives? I’m 33 years old and I have a 4 and a 2 year old and my husband and I felt that our family wasn’t complete but now I’m wondering if this diagnosis makes it possible to have more children. Referring to the fact that I’m not sure if medications used to treat VM are safe during pregnancy.