hello everyone - I found this website while searching for answers for my "vertigo", which I have had for a year. I say "vertigo" with quotes because that word doesn't seem to really describe it well. I've always thought of vertigo as feeling dizzy if you stand up too fast, or the feeling you get when you look down from a tall building, etc. But that's not what I feel.

First of all, this all started when I hurt my neck in September of 2006. The next day, I woke up feeling a little off. I won't go into all the details or this post will be a 10,000+ word essay, but it progessively got worse, especially if my neck muscles were squeezed in back. It was very bad for about 2 weeks and then sort of "settled" into a strange throbbing in the left side of my neck/back of head. The "vertigo" coincided with that throbbing, in exact time with it. I thought that there was some sort of "blockage" there. My neck was swollen and sore for a long time. I took so many anti-inflammatories, my esophagus started to spasm, so I had to stop. My primary doctor said I had cervical vertigo. I went to a neurotologist - he ran all the tests, which were normal except for a mild abnormality on the one where they put the balloons in your ear. My left eye was also not tracking well. I tested negative for vestibular disorder, meniere's etc. Then I saw a neurologist who said it was a coincidence that it started the day after I hurt my neck and cervical vertigo doesn't exist. I probably had a brain virus and he wanted to do an MRI. (does a virus show up on a MRI????) My brain was normal, my cervical discs were normal, therefore, according to the neurologist, I was fine and should see a psychiatrist. Thank you very much!! Next!

Then I was referred to another neurotologist who diagnosed me with cervical vertigo, he referred me to a physical therapist who treats it. He had me do vestibular accommodation exercises which changed EVERYTHING! It required lots of head/neck movement. The vertigo now changed from the throbbing in the left side of my head to where the floor felt like it was moving, and I feel like I'm standing on one of those floating piers. I have now felt like this for approx. 10 months, all the time, every day, whether I'm sitting, standing, walking, laying down. The only time I don't feel it is when I'm asleep, except for once when I had a dream of being on a cruise in the high seas, and I was on the elevator and it wouldn't stop at my floor. LOL I woke up with my neck in a bad position, so I'm sure that's why.

So I started seeing a craniopath, then an acupunturist/naturopath. They both helped my neck, but the vertigo did not go away. Then my primary doctor did some research for me (great guy!) and found something called barre-lieou syndrome which he thought sounded like me, except I don't have headaches and that is one of the symptoms. He referred me to a doctor who uses a specific procedure to treat it. This doctor had never heard of the syndrome. hmmmmm He referred me for biofeedback and energy work. In other words, if I don't know what's wrong with you, it's all in your head. This is the general concensus I'm getting. This last doctor was so incredibly rude and condescending to me. So I just went back to the original neurotologist, who agreed with me that there may be some kind of blockage as I still feel that throbbing in my head most days. So I will be seeing ANOTHER neurologist in 10 days or so. It is my hope that he will be more willing to listen to my story without thinking I'm some kind of loon.

this has been a major life changing event, as I'm sure you all can relate. I went through periods of depression and anxiety and a short period of time where I had panic attacks. I'm doing better emotionally now, but the vertigo remains unchanged. I try to be postivie, say my positive affirmations every day, do my energy work (worth a shot) and go about my life, but some days it's very difficult. I have more good days than bad now. My husband is very supportive, he's been wonderful.

So, have I hit 10,000 words yet? Close, eh? I'm interested in hearing what you might have to say.

What happened to the PT that gave you those exercises that made your symptoms worse? Did you stop seeing them? To me it doesn't seem like a coincidence that you hurt your neck and then you got "vertigo". it seems like they are linked. How did you hurt your neck? Did you hit your head at all? soemtimes trauma to your head can cause vestibular problems. And no a virus can not be seen on an MRI. People with dizziness get MRi's to rule out things like tumors causing their dizziness.

Sounds like things are maybe getting a bit better? you say you have good and bad days. I would continue to pursue the cervical vertigo diagnosis. Maybe find another PT that you like better if the last one just made you worse. Don't let doctors tell you that it's "all in your head". that is an easy answer when the problem is that they have no idea what is going on. Instead of admittin they may not be suitable to treat you, they fall on there is nothing wrong and you must be nuts. Find someone with more experience. Good luck!

One thing to consider, which is made likely by the type of vertigo you are experiencing (non specific dizziness/floating etc.) is post-injury migraine without headache.

Many people develop migraine after a head injury, fall, whiplash etc. The triggering event can also be a period of stress. Obviously most develop migraine with headaches as the predominant symptom, but others develop various different migraine variants including migraine-associated vertigo, which often manifests as chronic daily dizziness.

If you have any family history or personal history of migraine (with or without headache), this would make it more likely. The underlying genetic susceptibility to migraine often lies dormant until a triggering event "reveals" it and you become symptomatic.

Unfortunately the only way to determine this is to trial preventative migraine treatment and see if your symptoms resolve or improve.

I continued to the do the physical therapy for about 3 weeks until I just couldn't take it anymore. It made my neck worse (I had to stop working for almost 2 months), it made the vertigo 10 times worse and I started to have panic attacks. But I stuck with it because he was the "expert." Then it was obvious it was not helping. I saw the craniopath soon after and he said my neck was not in good enough condition to be doing those vestibular accommodation exercises.

I was just stretching my neck when I heard and felt a very loud pop on the left side, which is where it became very swollen and sore. I actually hit my head very hard a couple of years ago, but I never had any issues from that - it didn't cause a headache, just a bump and a sore spot. I did wonder if that might not have been part of this problem, but it was so long ago (2-3 years maybe.)

I have good days and bad days emotionally but the vertigo never changes - some days it's worse, but it goes back to "normal." It never gets better than "normal." I just handle it better some days.

One of my sisters gets migraines occasionally and my son gets them, too. I have had two in my life, 5 years apart. Could conventional migraine treatment help, even though I don't have headaches? My son has meds he takes, maybe I'll ask my doctor if I could try one and see what happens. I have not heard of a vestibular migraine until I read this board. I thought a migraine was a severe headache. Interesting! I also had gone through a very stressful period right before this happened. It sounds like the migraine is something to look into. Thanks so much for your replies, I really appreciate it. My friends are kind of tired of me talking about it, especially about my frustration with doctors. It's nice to have someone to talk with who knows more about the subject.

Like Joy said, it does seem like a little bit too much of a coincidence that this whole ordeal started the day after you hurt your neck. If you hurt it to the degree that it was swollen and painful for weeks, something must've gone pretty wrong.

I'm sorry I don't have anything else to tell you. Keep bugging the Drs, read up on these things yourself so you're informed when you go see them. Something is obviously wrong, you're not just making this up. Hopefully you'll have better luck with the new neurologist. And if not, there are always more. :D

One of my sisters gets migraines occasionally and my son gets them, too. I have had two in my life, 5 years apart. Could conventional migraine treatment help, even though I don't have headaches?

I expected there would be some kind of history! If your son has migraine, you certainly have the genetic predisposition to it. It generally is inherited through women, and fathers often do not pass it on.

If you say you've had two in your life, I would suggest you've probably had much more migraine activity, but you just haven't associated it with migraine unless it has been a severe headache that puts you to bed.

Worsening of it could always have been a direct result of the recent injury to your neck.

Conventional migraine treatment does work - but only preventatives. Drugs for aborting migraine like analgesics, anti-inflammatories, triptans etc. may give temporary relief in a few people but may make the long term outlook worse.

what are the preventatives for migraines?

My mother-in-law gets them, so I kind of assumed that my son inherited them from her. He also has Asperger Syndrome which he DEFINITELY got from her. She has 2 (possibly 3) grandchildren with autism related disorders. There is a lot in the news lately about autism, and I know from personal experience there are definitely genetic ties to it.

I think it depends on the mode of inheritance. I'm not sure what the current thought is in regards to the genetics of aspergers/autism - how it is passed down through the family.

Usually if a woman has migraine (as many do) - a number of their kids will inherit it. It seems to be quite a different story when a male has migraine. This is some comfort to myself as I would prefer my daughter didn't get it when she's older. But it is clear that migraine doesn't have to be inherited either.. there are likely to be migraine-causing "de novo" gene mutations (that occur spontaneously, without being inherited).

Overall, for you, its just a possibility - certainly the best neurotologist someone can recommend would be a good place to start, depending on where you're located.

Hi, i was searching for different cases on Barre-Lieou syndrome, on google, and i came across your post on this site. Im so sooo soo happy i fond this and i feel like i might be able to help you. Four years ago i got Into a fight with this girl. She hit the side of my face out of nowhere and my neck was jerked to the side. The next week, i felt a little dizzy but thought nothing of it. After about 4 months the dizziness became unbearable, and i was almost completely unable to walk. I had to be taken out of school, becaus ei just couldnt do it anymore. At times i felt like there was some sort of pressure on the back of my neck, but had no explaination for it. For 3 years i saw neurologists and, therapists and regular doctors, and "energy" doctors, and NOTHING helped me. the only explaination i had for what i was feeling was.. "im dizzy, really dizzy." I was unbalanced all the time, i felt like i just got off a ride. I was dizzy, sitting, standing and the only time i wasnt dizzy was when i was sleeping. I got weaker over time, and developed even more symptoms. I have panic attacks alll the time, i can barely shower sometimes, I havent left the hous ein over 2 months. Lats year i saw a chiropracter as a last resort since none of the doctors i had seen, could diagnose me. The chiropracter adjusts me neck and lower back and after a few sessions, i could walk again. But after a year, i went through a lot of stress and my symptoms came back, and worse this time. My eyes dont adjust to light, i have back aches, i get facial numbness, im very weak, very tired, and very dizzy all the time. After crying for days, my mom typed in all my symptoms online and found Barre Lieou syndrome. We flew to chicago to see a doctor who specialized in it, and he officially disgnosed me, since there are not tests to actually prove it. The cure is PROLOTHERAPY. I had one treatment back in may, but it was hard to travel from vegas to chicago when i needed the treatments, i just coudlnt do it. FINALLY after 4 years of suffering, 4 years of depression and anxiety, we found a doctor out here who can start my prolotherapy treatments. I actually start next monday. Your story made me cry because i felt like i was reading about my life. No one has believed me this whoel time. So many people have told me, "its all iin your head" but i knew the whole time it wasnt, i was ill. After 4 years i can finally have my life back and i know one of my purposes in life is to get the syndrome out there, get PROLOTHERAPY out there, and to help people who were in my position at one point in time. I really think you should look up prolotherapy doctors in your area and make an appointment, but u need to make sure they know about Barre Lieou syndrome or it will be a waste of time and money. I hope this helps some way or another. <3

Just came upon this thread. It's May now and I'm wondering what happened to the both of you? Have your treatments worked? I have your same symptoms. Please contact me..

barre-lieou sydrome could be the ticket. Question is, wouldn't "BePositive" have been diagnosed with having cervogenic dizziness if Barre-Lieou syndrome is the issue? You would think the doctors would have said she had cervogenic dizziness instead of diagnosing that she didn't. Barre-Lieou sounds like another way of saying Cervogenic Dizziness yes? Her docs should have tested her positive for it. I wonder if the test for CD is not the same for BL?

- - BePositive, have you been tested for BPPV? Is your dizziness head position related? I don't doubt that you have a neck issue, since you had symptoms directly after the incident to your neck. I'm wondering though, if BPPV isn't playing a part. If you have spinning dizziness, where the room spins, not just moves, but spins, this would be an indication of BPPV. Just a thought. It's one of the easier dizzy issues to correct.

If not, an orthopedic specialist would be able to help you with disc issues. I don't recall if you had a brain MRI or neck MRI. An Ortho could order you one of your neck and back to see disc herniation. An Xray will help show bone deterioration and misalignment.

Keep trying. Don't let anyone pass you off as nuts.