Thank you, everyone. And Victoria, I really appreciate the time you took to look into my previous posts before writing to me. When this first started, I did describe it as when “all hell break loose”, but had I known at the time that things would progress as they have, I would have known that true hell hadn’t broke lose yet. Things have certainly progressed, which is why I described my symptoms as progressive, as opposed to a big bang, in which the worst of the symptoms presented right away, all at once.
It’s not that I think you’re all wrong, or that it’s impossible to have MAV with my symptoms, but I’ve poured over hundreds of posts on this site, and it’s a bit discouraging that I can’t find others with my symptoms, with the exception of one person, who hasn’t found relief with meds. I even found a couple posts in which someone with slow spinning vertigo was told that they probably didn’t have MAV, as spinning vertigo isn’t the typical presentation. That’s when it really hit me that I might be barking up the wrong tree. I’m just missing so many of the symptoms and triggers that so many discuss here, but I do appreciate you sharing your experience with me, Victoria. It leaves me feeling slightly more hopeful that I might be on the right track.
As for the questions about Lyme Disease: no, I do not have chronic pain, or even episodic pain throughout my body, or anywhere else, for that matter. I did have a bull’s eye rash about 10 years ago, and it was followed by a month of illness, so I obviously thought Lyme might be the culprit, but I’ve had about 3 tests and they were all negative. I’ve read a lot about Lyme Disease, and I’m not sure I fit there, either. I’m missing a lot of symptoms you’d expect if Lymes was at the root of this. As I said, MAV and MDdS were my Neurotologist’s best guess. As I said in another thread:
“I really wish there was a clear-cut answer, or that my symptoms would be more specific, so that I could have more confidence in any diagnosis. When doctors say it’s probably MAV, but it could be this, or it could be that, or it could be from my incidental, non-symptomatic cerebellar ectopia (Chiari Malformation), I don’t know what to think. They all agree that Chiari is a very unlikely culprit because my CINE (flow) study is normal, and I don’t have the hallmark symptom of occipital headaches. Also, I’ve always passed all my Neuro exams with flying colors. Because my Chiari is so slight, and my CSF flow is normal, no one will touch me…surgically speaking. Almost every Neurologist, Neuro-opth, Retinal Specialist, and Neuro Surgeon I’ve seen in the past, plus the one Neuro-tologist I saw since the vertigo began, thinks I suffer from migraines. The only problem is: Chiari symptoms are very similar to migraine symptoms, but since they use the flow study as an indicator for surgical candidacy, I’m not considered to have a surgical/symptomatic Chiari. Chiari impedes CSF flow, and that’s when surgery is required. If the flow is normal—as is the case with me—surgery isn’t wise, as there’s no flow to restore, which is the goal of decompression surgery. I have seen a couple doctors who have laughed at the migraines theory, because, in their opinion, there’s no way in hell someone would suffer from constant, 24/7 symptoms for years.”
What do you all think about trying 5-HTP? I know that it acts as an SSRI, but far, far milder, and without the really harmful side effects. Just a thought. I’m not depressed or anxiety ridden, but if SSRIs can help the vertigo, I wonder if it’s worth a shot.
Thank you again. Your support and thoughts mean more than I can convey. Happy Thanksgiving.