How did this all start

Just wondering how everyone’s dizziness first kicked off?? Where there any specific triggers? xx

My dizziness started out of the blue one morning when I got up. I had felt a bit off for a few weeks prior, eg what I called little memory blips, kept needing to wee lots and felt a bit run down (Dr Silver called this the premonitary phase of migraine). The onset of dizziness started then the terrible anxiety and panic attacks set in.

I had been taking various medications in the months prior including antibiotics, antifungal meds and hayfever tablets. I always felt hayfever had some part in it and my dizziness still gets worse when I have hayfever. I have learnt since that migraine and high histamine levels go hand in hand x

DL – for me it was a massive hit of vestibular neuritis in August 2003. I was then dizzy non-stop for about 9 months until I hit 15 mg of Cipramil. That was hands down the worst period of my life. Thinking about it now is like remembering surviving a horrific plane crash or something equally traumatic.

The first symptom for me was my hearing. I couldn’t be anywhere near a lot of people. Everything echoed. The TV was too loud…seemed like everything was loud. Then came the low tone hearing loss in one ear, spaced out, dizzy, foggy brain. I couldn’t even walk to the mailbox. I felt like I was going to die. I was pretty much dependant on my husband. I couldn’t go to the grocery store or any store for that matter. The flourescent lights made me dizzy. Any bright pattern also made me feel really weird. The first 2 months was hell, then I went to see Dr. Rauch and got better and better each day. I cringe when I think about how bad I was a little over a year ago. Now I feel great. Able to do almost anything. I’m probably at 95% now. Thank God for this forum. I wouldn’t have been able to get through all of this these past 14 months if it weren’t for the incredibe people here.

That’s awesome Kathy!!! Do you think the Zoloft helps at all? You should post a success story for everyone to see!

I had several episodes of bppv starting in my early 20’s that came and went every 5- 10 years. They were mostly minor except for once when I was 25 and was put in the hospital overnight as the dizziness was so horribly bad. I recovered from that and went on to experience bppv every 5-10 years again. When I turned 40 in 2010, I had what I thought was another episode of bppv only this time the dizziness turned to a chronic state. Instead of just being dizzy when I went to bed at night I was dizzy all the time, I started having a difficult time with computers and shopping, had a very foggy brain, and motion head intolerance, etc. I was diag with mav almost a year ago now.


Mine was a ‘big bang’ event following a ‘release’ after prolonged stress (literally, I suffered two severe vertigo/rotational spins that made me fall over, just 30secs apart, just 15mins after months of stress ended).

Sudden intense dizziness and bad headaches 2009. Was told i had labyrinthitis and it would go in a few weeks which it did but then i had a repeat episode a few months later which although got a bit better never really went away until by 2010 i was left with chronic 24/7 dizziness until present day :frowning:

Have been told i almost definately have migraine by doctors/ENT but have never seen a neurolgist (i guess i should!)

Alway wondered if my house move, coming off the pill, period of stress around 2009 could have set things off?? Although i was also the ‘average’ age for women to develop MAV at the time, ie: 35.

Wow–I’m not 100% positive. I know that on July 28, 2011 I had a lunch meeting and felt sick to my stomach and went downhill gradually from that day forward. Three weeks after the stomach thing I was on to a Doctor’s appointment and noted that I felt wonky, like I was “pulling to the left” and bubble headed. He was sure I had a brain tumor–told me so, explained that I needed an immediate MRI–and scheduled one for 6 weeks later since that was the soonest I could get in. So, therefore, if the tumor didn’t kill me before 6 weeks were up, and if the tumor didn’t spread and take over my whole brain, I’d know something next month :evil:

Needless to say, I found an MRI technician who could get me in prior to the 6 week mark (idiot doctor!!!). Turned out, no tumor. Calorics, other vestibular testing, blood work etc all fine with noted anisocoria (one pupil larger than other) and mild right beating nystagmus–also a few small spots on MRI (both regular and with contrast) consistant with migraine activity.

My major symptoms include the disequilibrium and drunkeness along with what I would call tension type headaches (not te lay down and puke in a dark room kind of headaches thank GOD!!), flashing lights and sudden onset nausea. On further reflection–might have had issues in the past, but were spread out so much that they were seen as stomach bugs or illnesses–never before been hit with chronic issues like this.

I went to bed normal woke with severe vertigo literally could not move my head even whilst still I was spinning violently. That sensation lasted 7 days that’s how long I span out. It got better so k could walk again but was very bad for about 8 weeks then I just platued and stayed off balance dizzy but functional with it.
That was 3 years 6 months ago and I’ve never been the same but got better gradually but oh so slow. I was told i had a vestibular event that triggered it all off. I was 23 when it happened. I had vertigo attacks though before that that started at 17 but always woke up better the next day but one day it happened and I guess my system just scrambled x

Woke up to room spinning Mar2010, diagnosed bppv but given no treatment. Continued to work long hours and went through a number of stressful events. Had recurrent episodes for next 18 months until eventually cured by fifth Epley. Meanwhile MAV developed in the background, starting with feelings of lightheadedness and falling/ fainting feelings at times of stress letdown. Also developed anxiety and panic attacks and went through early menopause. Bent over to kiss my son goodnight on night of royal wedding April 2011 and when I stood up the floor was moving and I was rocking/ bouncing. This has continued 24/ 7 since that eve with no let up. Just went up to 2.5 mg pizotifen with fingers crossed.

Sarah… Yes the Zoloft did help. I’m on 50mg now. Still on 70mg Nort. I am so happy. Hopefully it will last a long time…

that;s awesome- so does it help with your tolerance of the florescent lights at work- did you say that when u walk at work you rock a little- is that gone now? That is great about the zoloft- im surprised that he rx’d that considering in rauch’s contribution to one the threads where he answered questions, i believe he said he never rx’s ssri’s for mav! maybe it is a new thing he is doing? dr. lewis (my dr.) said he never rx’s ssris or snris for mav.

It did help with the flourescent lights. I would say I’m 99%…just a slight rocky. If I walk down the hall and have other things on my mind then I don’t even notice it at all. Rauch’s first drug of choice is nortriptyline. (tricyclic antidepressants) Before he even said what he would prescribe I said Nort lol. I guess it would matter what other medical conditions you have. I feel great.
Which med are you on? Have you had mv long. I’m kind of a newbie, 14 months

I’m on nortriptiline and lyrica right now, going to drop lyrica. I have had this since Oct 2010. The first time I tried Nortrip I got this side effect where both my feet felt like they were constantly asleep. I put up with this for 6 weeks and it never went away which sucks. I tried it again months later and didn’t get that side effect, but I don’t think it works as well this time. It doesn’t help my balance or my visual symptoms. Glad to hear you are feeling good!!!

The fist symptom I experienced was motion intolerance. I drive 45 minutes to work each way and it just got worse and worse. Initially thought it was my eyes as it only occurred when driving. Than I would get dizzy at work which I now know was from the computer and lights. The next symptom I started to notice was grocery stores. They were a total nightmare. Than in November of 2011, I got dizzy at my gym to the point I thought I was going to die. The dizziness never stopped after that point and got worse and worse where I was pretty much bed ridden for a good 9 months or so. Most horrible time of my life. Until I was finally diagnosed and treated, I thought for certain I was slowly dying.

I thank God every day for Dr Fife and this forum.