The Vestibular Migraine Community
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Update for my new friends here!


#1

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!

Chris


#2

Good for you. That’s wonderful. I’ve haven’t followed yr story but was so excited at yr success I’m responding before I can honestly say I’ve read yr entire script . Just goes to show MAV really can for some be a bucket diagnosis. In fairness I guess there are too many possibilities to tackle to exclude them all with tests before they reach the MAV diagnosis which is always quoted as a ‘diagnosis of exclusion’. Symptoms do seem to vary alot. Enough to make one wonder how many different conditions can actually produce MAV-like symptoms and it’s easy for the medics to latch on to MAV if there’s been the slightest history of migraine.

A close friend of mine who had labrynthitis 5/6 yrs ago still gets dizzy symptoms and has always suffered with sinusitis all her life but the medics and VRT all told her there’s no link but on her own iniative she takes Sudafed and/or Beconase and she says it always halts it. So I’m off to e-mail her.

Well done and trust the recovery’s maintained long-term for you. It’s great to hear some success.


#3

Thanks! I am sooooo hoping this reversal sticks. I feel such enormous relief and want everyone here to find theirs. I’ll be sticking around regardless and will certainly let the group know if my problems return. I really don’t want my new found success to alienate me from those of you who have struggled and continue to struggle and I will not be surprised if I have some flare ups, but honestly the sudden relief is quite startling. All the symptoms - tinnitus, disequilibrium, hearing loss, panic - are gone and it doesn’t feel like a fluke.

I too believe that our problems so often result from a syndrome of many triggers and that trying to find a single diagnosis may only add to the frustrations and stress. I also have TMJ and spine issues and even looked into TOS (thoracic outlet syndrome) for which I discovered some exercises to stretch the scalenes in the neck. It all seemed to help.

Good luck to you and to all!


#4

How much cbd do you take and how many days of trying it did it take to see relief from dizziness? Thanks! I ordered the pure cbd distillery stuff and tried for a couple weeks I think and didn’t help and if anything made me feel meh


#5

I can not honestly attribute CBD with the end of my imbalance issue, but that wasn’t the only thing I was dealing with. I was particularly unnerved by the panic attacks and the insomnia, both of which contributed, I believe, to my disequilibrium (non-vertiginous). I can say, now that the dizzy spells have vanished, that continued use of the CBD oil has continued to help me with anxiety and sleep. It doesn’t provoke more disequilibrium or any “meh” so I’m sorry it wasn’t of help to you. I was vaping the oil, pretty regularly at first, and the effect was quite quick. I wouldn’t say I got “stoned” but I could feel the release of anxiety quite palpably - in a sense, euphoria.

But I also started using benedryl and rhinocort at the same time, as well as supplements of vitamins B2, B12, D, magnesium, zinc, alpha lipoic acid, chromium picolinate (for elevated blood sugar) and omega 3’s. I also have continued with my upper-cervicular chiro treatments. It’s really impossible for me to attribute my turnaround to any one thing but I do believe the CBD oil helped.

Good luck with your journey


#6

How much lipoic acid and what time of day? I’ve taking multivitamins with a lot of zinc I believed and was on b12 for a good chunk of time and omega 3s for years but don’t think those did anything


#7

I am not consistent with the Alpha Lipoic but when I take it, 2 or 3 times a week, it’s 600 mg during the day with a meal, usually breakfast. I sometimes take N acetyl cysteine (NAC) instead. They are both about producing glutathione, which is supposed to help with lung and respiratory function (I smoked a lot as a young person, along with my allergies).

And I want to stress that however dramatic is the reversal in my symptoms, particularly the absence of disequilibrium - which is indeed the symptom that was most unsettling and hardest to cope with(!) - I do not consider myself fully healed yet. My blood tests were mostly negative to mild for food allergies (IgG) but my environmental allergies (IgE) were way up so I’ll be doing more testing to try to discover what sets my sinuses raging. Indeed, the disequilibrium I was experiencing may very well have been MAV as I do occasionally still have mild tinnitus (in the morning, goes away quickly) and sinus pressure/headache (which responds to low dose aspirin and ibuprofen, which I try to avoid). I wish I could pinpoint exactly what part of my healing routine is helping most, but I am trying so many things it’s quite impossible to know. Sometimes I think that the xanax I took a few times somehow helped to reset my middle ear and started me on the path to better. It clearly had the most obvious effect on suppressing my vestibular problems when they were at their worst and whereas I wouldn’t recommend benzos for long term relief, my experience was that they stopped the dizziness cold and provided real relief within an hour of taking them.

I may just be lucky… and am aware that it all may start up again out of nowhere. I should also say that my improvement coincided with a dramatic decrease in outdoor environmental pollens, the levels of which were catastrophic here from December thru most of May. And I also know for a fact I am allergic to dust. The imbalance I was experiencing made it near impossible for me to clean so my inside environment was also likely toxic. IN fact I’m gonna do some today, wearing a face mask, ha!
Hang in there and good luck! chris


#8

That is awesome CBD oil is taking away your dizziness. I know it helps many people with anxiety and depression so that may be the reason. Doctors put us on antidepressants and maybe CBD oil is working the same magic. I use it myself for head pain and leg pain which has recently been a side effect of Effexor.


#9

@pugg, you live near me and my neighbor just mentioned the other day that his allergies are giving him problems again. I noticed that he was wearing a mask while he mowed his lawn.

And then of course the humidity is sky-high and I’m sure that encourages mold growth that we may not be able to see, but it’s probably lurking everywhere.


#10

That’s so great, Chris, that you have been able to find some relief. I can imagine that it you would be hesitant/not trusting of the relief, but I really hope that it is permanent for you as well (although I know you stated you aren’t 100%).

I have a pretty similar trajectory/story as you. I was diagnosed with vestibular migraines about 6 months ago. I have had chronic sinusitis and sinus issues for a really long time (I am 24 yrs old). I had sinus surgery in February of 2017 it got so bad, but found significant relief from it for about a year. However, about 6 months ago, I had a cold/flu which turned into a sinus infection. It was the first time I was sick in about a year so I had a really good year. About a week after that sinus infection, I had my first dizzy episode. Pretty scary, I went to the ER, and pretty much have been in disequilibrium and MAVing ever since.

My paranasal sinuses are my issue as well - my CT scan and MRI both showed air/fluid levels and mucosal thickening. I believe my sinuses to be a co-morbidity of the vestibular migraines but also sometimes see a fine line between my sinus pressure and overall head pressure and constant congestion and how it can lead to or affect my migraine symptoms. It’s all a mess! I really need to get allergy testing done because I would like to get to the bottom of why I am always congested or feel like a balloon. I do sinus rinses and use flonase, but I feel as though I don’t get full relief and the chronic sinus issues are rearing their ugly head again after I had about a year of relief from the surgery. Again, not sure where the line is drawn between my migraines and the sinus issues as I’ve heard “sinus headaches” can really just be migraines. I believe the congestion and mucus is happening for a reason (allergies) and I should at least target that.

After trialing three medciations for migraines, I have started CBD oil supplements. I believe they have greatly reduced my anxiety already. I haven’t had a panic attack in a week or so, and the anxiety that comes from these episodes isn’t quite as bad. I still have dizziness and vision issues, however, I will take any sort of relief and know that stress/anxiety, whether it’s a product of the migraines, or a trigger, needs to be under control.

Your story resonated with me and I’m going to try and take care of my allergy/sinus issues as much as possible.

Thanks for sharing - I’m so happy for you that you’ve found relief! It gives us hope.

Best,
Elizabeth


#11

Thanks Elizabeth and I too hope you (and everyone) can find some permanent relief but until then we all just have to cope. I share your frustration still with the MAV/sinus conundrum, indeed, the other day I had a very mild “off balance” day, which seemed to be triggered by the weather and which responded to aspirin and I’ve never seen where aspirin works for sinus congestion… it was preceded by some visual aura as well (which I’ve had all my life without dizziness prior to this winter) so there’s something migrainous ( my sister had them all her life) going on as well as my sinusitis. Sometimes my sinus congestion is clearly allergen related and sometimes it feels more like inflammation. Having read what you and others have gone through it’s also clear to me that my problems resulted in a far less severe, less debilitating experience and I count my lucky star about that. I don’t know how much the CBD oil helped the disequilibrium but it definitely calmed a level of anxiety I’d never had before ( I am an opera singer and never had problems in situations which were terrifying to others) and which was triggering it in public spaces.

I should also mention to everyone that I started taking niacin (500 mg) along with my other B vitamins, magnesium and zinc and have read several articles about its ability to help with migraine so who knows, maybe that’s why I had such a sudden and fortuitous turnaround. At any rate I am prying that the absence of my symptoms (especially the vanquished tinnitus and hearing loss!) sticks around for a while, for sure. As I wrote before, I had gone through a mild version of this off and on since 2013 and had enjoyed a 1 and 1/2 year respite before this more severe case started in January. At 61 years of age I had escaped the life long struggle that so many go through and I will persevere through this no matter what happens! Chris