Hi I just found this site and I’m so glad I did. There is soo much info on here. My dizziness started late October 2018. I went to an ENT and they told me I have vestibular neuritis. It got better after about 3weeks. I caught a cold and my symptoms returned. Went in for VNG testing and everything came back normal. He said it was central because I had upbeat nystagmus. I freaked out and went and had a ct scan it was normal . I had my neurologist check it and myself out and he said it was normal and suggested VRT. I did the VRT and got 95% better. Then I caught the flu and my symptoms returned after the flu I caught another cold then tonsillitis… my symptoms are dizziness brain fog head pressure but no room spinning vertigo. It’s weird I get relief when I drive my symptoms dont go away but they are very mild. I’m seeing a neurotologist on Monday Dr Gacek.
Hi Kevin, welcome to Mvertigo! Glad you’re here, but sorry you have to be here. Sounds like you have had some good care with getting an ENT and scans “early”. I say early since many here don’t get the care needed for many months and years in some cases. Going to the neurologist as your next step is great! I hope they’re familiar with vestibular migraine, your symptoms sound very familiar to us here. The upbeating nystagmus is particularly telling (it seems by what I have read) that upbeating and downbeating are unique to neurological issues. My caloric test showed downbeating nystagmus. Which really threw my ENT for a loop, but made perfect sense to my neuro-otologist. I hope your appointment goes very well on Monday and you can get the answers you need! In the meantime, welcome! You will find a wealth of information and support here… I have!
Hi and welcome. 🙋
I’m glad the doctors are moving to find out the cause of your symptoms.
I often find that colds and flu can lead to MAV breakouts.
I hope that you’re soon on the road to stabilising your condition.
Welcome! My coworker came down with vestibular neuritis thought to be from shingles, and every time he gets a cold or virus, his dizziness flares up again. His Dr said this is typical. He has no personal or family history of migraine.
That’s what I’m thinking vestibular neuritis. I was told it can produce no nystagmus if there’s no vestibular damage. Idk I’ll leave it to the pros. I’m going to ask about the antiviral treatment. His father came up with it. But then again if its VM o dont think that will help
Welcome! Hope your appointment with Dr. Gacek goes well. I’ve often thought about doing the antiviral treatment as well, I don’t think there are many side effects, let us know how it goes.
Same with me and others on here. Something about constant random vibration/movement that covers up the vestibular problems I would guess.
Seems odd. Some people say that. Shouldn’t be really. VM/MAV is variant balance disorder so you should be motion sick really except motion sick people like me are more likely not to be sick if actually driving rather than passenger. You can read all sorts of things but one I’ve read is if distraction stops the dizziness it’s PPPD, not VM/MAV. May be true for a few. I don’t know,
Oh, are you better balanced running than walking? Because if you are, that’s supposed to mean it’s ‘Vestibular Neuritis’. Personally I think perhaps these generalisations are not to be relied upon. Helen
Here’s where we differ and I know we have discussed it before. We must be two different subsets of the same condition maybe, the Vertigo and the Non Vertigo subsets. if you find (Non ‘vertigo’ as is our new companion @Nivekc251) where constant random vibration covers up. And I’m the ‘Vertigo’ subset where such movement just ratchets it up, and how (or did pre meds). Helen
The faster i move the lesser the symptoms. That’s weird you mention if you run it gets better with neuritis. I walk so fast at work now people are asking me why am I’m in such a hurry. Sorry I’m a noob I dont know how to use the quotes of others lol
Seems you might be proving the theory then. Though which one I’m not sure! Goes to show the variance that occurs under the MAV Umbrella. Helen
I saw Dr. Gacek. He did a hearing test and a VNG. I have right sided vestibular neuritis. He has me on prednisone, and acyclovir. I will let everyone know if it helps. I really liked him. He was the only ENT who knew what was going on with me. The others were very ignorant when it came to my symptoms. Thank you guys for all of the support so far!
It curtainly sounds like you’ve been through it over the last 6 months or so.
Hopefully you get the answers you need on Monday so that you can start treatment to get this under control and get some kind of normality back.
It’s always a comfort chatting to the guys on here.
All the best
It’s been a rough ride. He seemed very knowledgable about what I’m going through. He was saying anytime the body is stressed the virus in the inner ear can basically flare up, like a cold sore. He said getting sick or very stressed, lack of sleep, menstrual cycle if u are a female. I’m praying this can help me.
Ok I’ve been on 2400 mgs of acyclovir for 2 weeks now and I feel great. The brain fog started to leave last Saturday. I’m starting to feel like my old self again after 7 months of feeling terrible. hopefully this isnt just a brief remission. I’ll give a 1 month update and hopefully I’ll still feel this way.
Was just curious how you feel now? Is acyclovir helping still? 2400mg seems like a lot!?
Recovery of Hearing in Meniere’s Disease after
On the basis of the current understanding of the pathophysiology of migraine headaches, specifically the role of HSV-mediated trigeminal inflammation in migraine symptomatology and the antiviral characteristics of famciclovir and celecoxib, we believe these medications may work synergistically to treat migraine disorder.”
Nice study, I’ve seen that one before. I haven’t been able to convince my Neurologist to prescribe antivirals, not sure how to find a doctor that will. Dr. Gacek is a long ways from me…
I am on the same boat. Couple of points i have been mulling over
Can one take vitamin C and probiotics and anything that charges the immune system as a replacement for antivirals. HSV has always been in the human body and our body should be able to fight it.
Antivirals can they damage liver at higher doses over longer durations ?
The safety and efficacy of antivirals beyond 6 months have not been established. So even if i land up trying it , cannot be a long term solution.
If VM has hormone related causes like menopause, periods, child birth some of which clearly has no virus causation then there is a chance that we might have a non-virus cause as well. But then again i don’t see any harm in trying the antivirals. I have tried Betahistine for 6 months and did not help, so experimentation is not new to me.
Keep me posted on whether you land up trying it.
from Dr.Hain - * Antiviral therapy (such as acyclovir, no evidence for effectiveness)