I was scanning the internet on Christmas Eve and I must say, this website was the best Christmas present I could have asked for. I can’t tell you all how happy I am to have stumbled upon it. Thank you to everyone who has worked to make this site a haven for those in need.
I’d like to tell my abbreviated story, my apologies if this is not the correct area to do so. If someone with more experience would be so kind, I also have a couple of questions.
I have had “dizzy spells” my entire life, as long as I can remember. By dizzy I mean a light headed, just got off a boat, the world is rocking, off balance kind of feeling. I have never had the feeling of spinning or that the world was spinning around me. There had seemed to be no reason as far as I could tell as to the cause or timing of these events. Looking back I think they may have primarily happened A) when I was recovering from a cold, B) in the winter, C) during stressfull times. My other symptoms include: occassional high pitched tinnitus that lasts seconds to minutes, light sensitivity, sound sensitivity, an occassional feeling that the top of my head was not attached to my body, ear pressure and fullness on the right side, stiff neck problems and a “foggy brained” feeling, also the occassional feeling of post nasal drip. For the past two years, theses “attacks” have occured in the winter and lasted about 2 months. I started this past December 1st and though there have been good days, all of the above symptoms have been there to some degree. While I notice these symptoms much worse in the winter, they also happen throughout the year on occasion, particularly in the beginning of summer and also “mini” attacks right before a storm comes. Windy days are terrible for me, very off balanced and spacey.
As a child my parents took me to an ENT, they did the balance tests and they came back normal so the MD just gave up, for lack of a better term. When I was 23 I had a terrible attack where I was out of work for a week, symptoms listed above but by far the worst one was the off balance feeling. Then I had a lull for a few years, then last winter came back. Saw another ENT starting 3 years ago and has been treating me for menieres because my main symtom is the dizzyiness, he is calling it atypical menieres. Diuretics and low sodium diet have done nothing for me. I have an appt with another ENT in about 2 weeks and want to go in armed with information, not confrontational but at least to say that I don’t believe it is Menieres.
Any advice anyone can give would be greatly appreciated. Rather than Meneires, I thought at first I might have had Eustachian Tube Dysfunction only because when these episodes occur it is very difficult for me to get my ears to pop. Now, reading the many posts on this site, i am beginning to think it may be MAV all along. Does anyone have these similar symptoms? Can you have a clogged feeling in the ear along with MAV? So many questions I have but those are just a few. For those ov you who have suffered for very long, do these symptoms sound similar. I must also add that when I do get dizzy I also get very panicky and I know this makes the dizziness even worse. I have appt coming up with a psychiatrist also., never been to one but the panic attacks and depression that occurs when these symptoms occur can be a bit overwheliming.I do apologize for the length of this note, there is so much more I want to say but am so happy to have finally found a site like this. I know many people suffer much worse than I am, I wish we can all band together and support each other. A very happy New Year to all of you! I wish us all dizzy free days ahead!
Welcome Cartney and glad you found a place for some real answers.
Everything you said above sound a like a textbook case of MAV to me.
When you go to the appointment take this paper with you:
Hi Cartney, and welcome.
This is really weird because your post just helped me put two and two together - in November I noticed I wasn’t feeling quite right, but since I’ve been on Topamax I haven’t had any severe dizzy spells, the kind that make me hold onto things to keep me from falling. When all this started for me 3 years ago, it came on with a really severe spell of dizziness complete with a tunnel vision aura, and then I developed the daily rockiness, just off the boat feeling. I realized a couple days ago that my “not quite right” feeling is a low grade version of the wobbly, rocky, just off the boat feeling, but it’s more subtle due to the medication so I couldn’t even recognize it. And I checked my calendar, and it was almost a year ago in November (to the day!) that I marked that I was feeling some breakthrough dizziness. And a year before that, around this same time of year, I felt the 100 mg of Topamax that had worked for awhile was no longer controlling my symptoms, but I thought that was entirely because of the addition of a “locally administered” form of estrogen that was probably causing hormonal fluctuation dizziness. So my doc increased my dose.
Now I wonder if I’m having a winter worsening pattern too! I certainly get barometric worsening (before a storm or weather change), but those don’t seem to last for days, as this particular worsening has. But I’m also going through a new medical problem that’s affecting my sleep, which is a major migraine trigger, so while we’re trying various solutions for that, I’m thinking the disturbed sleep may be keeping me a bit “off balance” for awhile. And that feeling just sucks, doesn’t it???
Your symptoms do sound like MAV, and don’t feel bad for not having the worst case of it!! Yes, some have posted here about more debilitating cases but we are all thrown by this thing - it’s a scary thing, and anybody who’s never been there can’t quite understand. But we do, and we’re glad you found us. And I’m glad you helped me connect the dots - this winter pattern is very interesting!!
Take care, and do keep us posted.
yes, i have all the same symptoms…a similar timeline as well. I got a very bad headcold in Oct…this is when the “dizzy” period started again for me. Last year I was dizzy from Jan to march, every single day was hell & then it just STOPPED. I am still wondering WHY?..is this thing seasonal??
My hearing is fine so menieres has been ruled out…even though this is what i thought i had all along. ive learned so much on the web & from places like this forum.
good luck 2 you.
Reading your post felt like reading my own migraine life story [shudder]. Your symptoms sound EXACTLY like migraine and much more so than Meniere’s. People with Meniere’s don’t get photophobia or phonophobia for example. Also, Meniere’s is very rare and migraine is very common. I too have been having trouble with my ears (mainly right sided) including a sense of fullness, muffled hearing and some pain. This is a new symptom for me but one my neurologist is confident is still migraine, not Meniere’s.
Other than the advice you’ve already been given I’d suggest you see a neurologist or neurotologist - they are much better equipped to diagnose migraine than an ENT.
Best of luck
Your long history of symptoms sounds like a textbook case!
Just speculating . . .“winter worsening” also characterizes seasonal affective disorder (SAD). A number of us have found benefit in modifying the type of light that reaches us, something that’s also true of SAD. However, in our cases we’ve found benefit more commonly via wearing shades, whereas SAD seems to respond well to increasing the amount of light rather than cutting it down. Yet, at least for me, SOMEtimes letting more light in helps . . . .
Wow, thank you all for the warm welcome and responses. Still filled with so many questions and doubts but the more I read other posts the more I see my own story. Is it possible that there are times of the year that the symptoms get worse? I noticed someone commented that it could be SAD which may very well bew true. Also, do migraine sufferers get that post nasal drip sort of feeling? Is it possible I have had this my entire life? I’ve purchased the “Heal Your Headache” book that many speak very highly of, hopefull there might be some answers in there as well. Perhaps a neurologist would be better to seen than an ENT at this point? I am not sure if it is against the rules on this site, but is there anyone that can recommend an ENT or neurologist who is open to the idea that it might be MAV? I live about 10 minutes outside of New York CIty in Bergen County NJ so I am sure there are many MD’s in the area. It just seems that the 2 ENT’s I have seen in my life either downplay all of my symptoms, think I am over reacting or continue to try treating me as if I have Menierres even though I’ve done quite alot of research and really think that is the wrong direction for me.
Thanks again for your responses. I feel as if I’ve just made a bunch of new friends! All the best to all of you for 2012!
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Also, do migraine sufferers get that post nasal drip sort of feeling?
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Oh yes. I do. And both myself and the doctors attributed it to sinusitis and various other things. I now realise, many years later, that it all comes under the migraine umbrella.
The closet person I know to you is Dr Newman. A few people here are having their migraine managed with his supervision. Another great doc is Steve Rauch in Massachusetts.
The original founder of this site, named Adam, had major sinus issues before his migraines. Running nose etc for years but no more since taking Zoloft. So yes migraine can cause this.
Just wanted to pop my head in and say hello to a fellow “newbie” here. I too, just found this website, and I think it’s a HUGE blessing! My symptoms are a bit different, but I can completely relate to your feeling that finding this site is an incredible gift! LOL I can also relate to wanting to write a book and describe everything you’ve been through as it’s such a relief to find very well-informed people going through some of the same challenges! Anyway, like I mentioned, I’m very new here as well, but thought I’d say hello anyway.