I may be premature in reporting this, and god knows I do not want to sound smug or self satisfied as I’ve learned so much here, reading your stories, admiring the courage so many have shown in dealing with their issues for years and decades without finding definitive answers. But I have had a remarkable turnaround in the past 3 weeks and am hoping it isn’t a fluke.
Some may recall I had self diagnosed as MAV or maybe PPPD, with Meniere’s also a possibility because of the tinnitus/hearing loss I was experiencing. MRI showed no acoustic neuroma but did reveal extreme inflammation of paranasal sinuses. I found a new primary care physician (a D.O. not and M.D.) who I like very much (the ENT doc I saw was not impressive and I vowed not to return to him no matter what the MRI showed) and who ordered some blood labs. He also prescribed CBD oil. He noted some extreme post nasal drip and I told him I’d stopped taking claritin because it didn’t seem to work at all anymore. At the time I was not taking any anti-histamine.
When I got home I decided, on my own, to start using rhinocort thinking it could help with sinus inflammation.
I also had my eyes examined and indeed, I needed a new prescription for my astigmatism… and a remarkable thing happened there. When the doctor dilated my eyes, all my sinus pressure and the disequilibrium vanished, poof, was GONE (!) and it stayed away the entire time my eyes were dilated, which was for several hours after the exam.
When I mentioned this the next time I saw my D.O. the first thing he said was… benedryl… so I started taking it, only occasionally when the sinus pressure/congestion was really prominent (coinciding of course with the presence of my disequilibrium). Previously I had gotten relief using (VERY occasionally) a microdose (<.25 mg) of xanax and I have to say it worked well at suppressing my vestibular response to whatever was making my had wonky and undermining my balance.
Anyway… the blood labs came back mostly negative for food allergies except cow’s milk (thank god I can eat FETA again, this greek boy was not happy thinking it could be triggering migraines) corn gluten (weird because corn doesn’t have gluten) and alfalfa (glad I am not a cow!) but did have a very elevated IgE level to some environmental allergen. I also had elevated eosinophils (4.7) which he suspects also indicate an allergic response prompting excess white blood cells. He has ordered more specific, more thorough blood labs to look closer.
In the meantime, since using the rhinocort, benedryl and CBD oil now for 3 weeks my symptoms have mostly vanished. When I have the disequilibrium, it is much less severe and does not last days and weeks like during the previous 4 months… mostly it goes away in a few hours and sometimes in minutes and again, it is not debilitating. I do not have to lie down to wait it out, I just have to slow down my movement a bit. My tinnitus is also mostly gone… it’s been present on a few mornings when I wake up but clears up soon thereafter, doesn’t last for days and weeks…really, it just stopped for the most part. Also regained most of my hearing in the left ear, back to the level of loss which I suffered decades ago way before the disequilibrium started. And no more panic attacks at the grocery store. I can shop at Publix again. I still get ocular migraine symptoms - which I had most my life without the headache - but the extreme non-vertiginous imbalance (the push me/pull me, rocking boat kind) does not follow. I had been having extreme responses to weather changes and that has stopped too. My doctor has always been looking at the sinusitis as my problem and, without condescension or dismissal, played down my concerns about MAV or meniere’s. And now we have reason to believe that he was right.
I still have the occasional “dizzy” day but as I said it is far less severe. Most of my days recently have been totally clear… eyes, ears, head… no problems. I feel so damn lucky and although I don;t want to celebrate too soon, knowing it could all start up again (after all, I’d been through less accute versions of this off and on since 2013 when the claritin was working) My spirits are lifted immensely.
And I will say that I believe the CBD oil works miracles with the disequilibrium… when I have an “off” feeling I use some and it usually goes away). If you live in a place where CBD oil is legal I’d highly recommend trying it and I hope the world gets its act together on acknowledging the tremendous medical benefits of marijuana. Now, the CBD oil doesn’t get me “high” but it does give a sense of euphoria, calm’s the panic and really helps me sleep! One downside is it inspires the munchies and I gained 8 pounds in 3 weeks, but am glad to say I’ve got that under control now too.
I would never have imagined that the severe vestibular problems I was having, and which scared the hell out of me, could have resulted just from allergies and sinus inflammation but that may be the case for me. We’ll see what the next round of blood work finds in terms of environmental allergens…
And PLEASE PLEASE (!!!) know how much finding this site and all the great people here has done to help me cope. Reading your stories, understanding the courage it has taken so many of you to persevere through lifetimes of misery, misdiagnosis, frustration… indeed, I feel guilty to have whinged at all about my relatively benign, by comparison, experience and hope that you all find the relief you are searching for. Sending big love and great vibes to you all, my new, dear friends!