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Undiagnosed Chronic Vertigo

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Old 03-09-2010, 11:10 AM   #1
Join Date: Mar 2010
Posts: 4
RCook HB User
Unhappy Undiagnosed Chronic Vertigo

For almost a year now(started in March 09'), I have had every day, constant, 24/7 vertigo/balance issues. I essentially am "drunk" every minute of every day. This was initially caused by an inner ear infection, but has remained long after the infection went away. I see and feel everything as though it were on a tilt(see pic reference below). It started out tilted to the left...I also had strong and frequent dizzy spells that lasted around 2-3 months. The severity of them faded over that time, but the imbalance physically and visually have remained. About 7-8 months later, I began experiencing an increase of the severity in the dizzy spells and headaches again, and everything began shifting to the right instead.. where I remain currently. Again, the severity of the spells faded over a few months, and I continued on with the imbalance. Now, only 5 months into the change, I am experiencing an increase in the severity of the spells and headaches yet again. It is very debilitating at times, and has cause me great difficulty in trying to sleep, since when the spells are bad and I close my eyes, I get a spinning sensation, which makes it almost impossible to sleep..

I have been to several doctors, including an ENT and Chiropractor(who I am currently seeing). I've had the vestibular tests done, been put on the steroid packs, meclizine, bppv tests, blood tests, and an MRI as well. All tests came back normal so far. It's pretty much undiagnosed, but with process of elimination, I have personally concluded that it has to be related to the central nervous system/cerebellum(even though the MRI was normal). The chiropractor I am currently seeing is confident he can have me relieved in 20 visits, but I'm skeptical since this has gone on for a year with no sign of relief in sight. One other chiro I saw had said it was my neck muscles being super tense(which they actually very tight) crushing the nerves near my brain stem/cerebellum... unfortunately, my lack of insurance cannot afford him.

So, I pretty much feel hopeless at this point, considering my last option it seems, may fail and that there may be permanent nerve damage that will cause me to have this the rest of my life. Any help or direction is appreciated.

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Old 03-10-2010, 06:35 AM   #2
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alborde HB User
Re: Undiagnosed Chronic Vertigo

Have you seen a neurologist? I know there are others on here with MAV (migraine associated vertigo). You can have a migraine with vertigo and no headache. Migraine preventive medications can help.

I hope you are better soon.

Old 03-11-2010, 12:39 AM   #3
Join Date: Mar 2010
Posts: 4
RCook HB User
Re: Undiagnosed Chronic Vertigo

I have not formally seen a neurologist, despite that I had an MRI done. I could explore the option you mentioned, but wouldn't that disorder you described be temporary in nature? It seems like it would be, though I wouldn't know for sure. The main problem with my disorder is that it has been consistent every single minute of every single day for a years time now. Thank you for your reply.

Old 03-11-2010, 02:37 AM   #4
Join Date: Dec 2006
Location: NJ
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Joni9921 HB UserJoni9921 HB User
Re: Undiagnosed Chronic Vertigo

I'm sorry you have been going through all this over the past year? Have you done any vestibular rehab? Often neck tightness is a result of dizziness- we limit our head movements and also we also tighten up with stress/anxiety- and not necessarily the cause- although it could go in either direction.

Old 03-11-2010, 11:05 PM   #5
Join Date: Mar 2010
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RCook HB User
Re: Undiagnosed Chronic Vertigo

If by Vestibular rehab you mean the head exercises, yes, I've done a lot of that. My last chiro told me that my neck muscles were indeed tight, thus crushing the nerves near my cerebellum. I am going through some rehab on that end, but have nothing conclusive yet.

Old 03-12-2010, 07:20 AM   #6
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patty818 HB User
Re: Undiagnosed Chronic Vertigo

i'm sorry your feeling like this. I saw your post and thought HOLY cow someone else with this crazy dizzy/balance thing. Mine started Oct 08, with this having to tilt my head to the left alot, then the dizziness, and finally the feeling like I'm swaying back and forth, but I'm not. I also noticed for a long time when I would lay down to sleep, I felt like I was moving up and down esp when I closed my eyes. THis will sound alittle crazy but when I lay down now and feel like this, I close my eyes and move my eyeballs up and down and it seems to equal me out.

I've seen the doc and ENT about it and one says anxiety and offered my valuim, which I threw in the garbage and fired him. My internist and my chiro thinks its a mixture of TMJ and very tight neck muscles. Well i do have bad stress in my neck and have for years, to the point of hearing it crack and creek when I turn it. Its seems when I have my neck adjusted it helps alot. I also have hypothyriodism which causes dizziness. I do have anxiety disorder, but I know the diff between the two.

I know the dizziness is scarey and I don't know what you've tried, but neck stretchs help and I've been doing deep breathing 3 times a day which seems to help when the dizziness comes on. Another odd thing I've been doing is, when it comes on and I feel like I'm swaying I won't allow it to bother me and consume my thoughts at that time. I tell myself, its dizziness and I'm ok and it hasn't hurt me yet.

I know it all sounds odd, but sometimes taking control helps. I really hope you find some help, coz veritgo is no fun.


Old 03-13-2010, 12:38 AM   #7
Join Date: Mar 2010
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RCook HB User
Re: Undiagnosed Chronic Vertigo

Yeah, I'm not sure about the consistency of your attacks, but when I mentioned it is non-stop, that means I wake up with it, I go to bed with it, I live with it every second of every day. Nothing has changed as far as goes the visual and feeling of it. I am hopeful my chiropractor can fix it, considering I have been able to better cope with it following my visits there, but until I see straight again, I'm not holding my breath. I still have attacks where the severity of it is increased, and I still have the headaches. If I find a cure-all for it, I'll let ya know.

Old 06-12-2010, 05:55 AM   #8
Join Date: Jun 2010
Posts: 7
vertigo78 HB User
Re: Undiagnosed Chronic Vertigo

Hi there,

I am also still undiagnosed after a year of suffering from vertigo. (not the spinning kind, the ground moving drunk feeling kind)

Having done lots of research and joined a few forums there seem to be so many possibilities of causes that its just a mine field. I was recently contacted regarding something called Chiari1. May be worth having a look at as well as MDDS.

Its definately worth seeing a neurologist and keep trying to get new opinions.
There must be someone out there that knows what's wrong with us

Old 03-02-2011, 02:41 PM   #9
Join Date: Dec 2009
Location: tulsa ok
Posts: 6
ktsooners HB User
Re: Undiagnosed Chronic Vertigo

Hi RCook, any updates? I check out the boards periodically for my husband, he has been having the same symptoms as you describe for the past 2.5 years, daily, never stops. He has found some relief from taking SSRI (Lexapro) but the side effects carry their own set of problems.
Just wondering if you have found any diagnosis or relief??
Thanks for your help!!

Old 04-06-2011, 08:12 PM   #10
Join Date: Oct 2010
Location: Chicago, IL
Posts: 6
Longshort HB User
Re: Undiagnosed Chronic Vertigo

Count me in the same boat as you guys. 8 months and counting. It started with waking up with vertigo and the room spinning, unable to walk. That passed, then it returned once again a few months later. Since then, I have been residually dizzy 24/7 especially when I close my eyes -- I feel like I am in a turbulent airplane. I am dizzy all day to some degree.

All tests negative so far, the doctors have given me so many diagnoses that I have lost all faith: bppv, MAV, VN, ear infection trauma. They said that since the MRI was negative and my blood is fine, and my overall health is very good, that I should just wait it out. One test showed 25% hypofunction in left ear. Finally, it has been improving like maybe 4-5% per month, incredibly slow. I can finally run and work out, and stay at my job 9-5. However, I am dizzy as hell the whole time.

The problem is that it is difficult to sit back.

I am constantly thinking that the doctors have missed something -- a neck problem, a nerve problem, MS despite the clean MRI, etc.

The only good thing I can say is that I have read tons of stories about people like us, but I never read of people dying from it. Yes, it ruins our lives, yes, it is brutal, but no, it does not kill us.

Old 04-06-2011, 10:21 PM   #11
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bindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB User
Re: Undiagnosed Chronic Vertigo

With a correlation of a headache and dizziness, MAV seems very likely. This would explain why you ENG test did not show a deficit. You need to start the migraine diet and see if it offers relief, this will serve as a good diagnostic exercise. You also need to see a neurologist who is familiar with MAV treatment because you may also benefit from a prescription migraine medication.

In my opinion, the chiropractor is a waste of time because he is not directly addressing your problem. He is just attempting to mask your symptoms. Unless of course your symptoms are a result of neck muscle tension, but this is unlikely.

Last edited by bindar; 04-06-2011 at 10:25 PM.

Old 04-18-2011, 08:52 AM   #12
Join Date: Apr 2011
Location: Ohio
Posts: 5
mkmoh HB User
Re: Undiagnosed Chronic Vertigo

Hi, I have to say that I totally understand where you're coming from! It's been a year and a half for me dealing with vertigo, and despite about every type of test imaginable, I haven't found any relief either.

My ENT actually suggested vestibular migraines and prescribed a low-dose anti-depressent to stop attacks, but that didn't help, so I'm not sure if migraines are really the culprit. He also suggested that I just have anxiety, which kind of pisses me off the more I think about it. I know that psychological issues can most definitely cause physical symptoms, but I don't feel particularly anxious. If I have any anxiety, it's DUE to the dizziness & having to miss so much work because of it. It's a bit annoying to have an ENT try to issue a psychological dianosis just because he doesn't have the answer to my problem.

Like someone else said, I wonder about MS because along with the dizziness, I've had other odd symptoms like GI trouble, numbness, the list goes on...

All I know is that I sympathize with everyone in this thread, yet it's comforting to know I'm not alone.

Old 08-24-2011, 03:30 PM   #13
Join Date: Aug 2011
Location: St. Louis, MO
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Irockalot HB User
Re: Undiagnosed Chronic Vertigo

I have had a persistent and year-long-lasting motion and imbalance disorder with phantom motion perception of rocking, bobbing and swaying for which I have seen my primary doctor, ENT & audiologist, 2 neurologists including brain MRI, eye doctor and orthopedic (former back surgery) to diagose the problem with no luck. The physical therapist to whom I went for vestibular rehabilitation said I might be interested in reading about Mal de Debarquement Syndrome (MdDS) under "specific disorders" on the web site for Vestibular Disorder Association (VEDA). I think I am not supposed to supply a direct link to theses sites, but you can find them easily through Google. There is a MdDS Balance Disorder Foundation with a web site also. Anyway, I was hoping others on these Health Boards had some successful help with this problem and could offer some suggestions. It is sometimes related to migranes, which is why I am answering your post. MdDS usually begins after a motion experience such as an ocean cruise or a plane ride, but sometimes just begins spontaneously.

Old 11-11-2011, 04:52 PM   #14
Join Date: Nov 2011
Location: Ashland, KY, USA
Posts: 8
rtwinam HB User
Re: Undiagnosed Chronic Vertigo

I am having the same problem with vertigo you are talking about here. Did you ever find your cause of your vertigo?
Thank you so much

QUOTE=RCook;4201705]I have not formally seen a neurologist, despite that I had an MRI done. I could explore the option you mentioned, but wouldn't that disorder you described be temporary in nature? It seems like it would be, though I wouldn't know for sure. The main problem with my disorder is that it has been consistent every single minute of every single day for a years time now. Thank you for your reply.[/QUOTE]

Old 11-11-2011, 10:17 PM   #15
Join Date: Aug 2011
Location: St. Louis, MO
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Irockalot HB User
Re: Undiagnosed Chronic Vertigo

I saw one of my neurologists three weeks ago and he agreed my "rocking and bobbing" might by MdDS (Mal de Debarquement). He prescribed a low dose antidepressant (nortriptyline) which I could increase over the course of a month. This is used to deter migraines, which I don't have, but which are often associated with MdDS. So far I can't see any improvement, but I'll keep taking them. I went from 10mg to 20mg after 3 weeks, and will increase to 30mg after a couple more weeks and see if that helps. Somehow I don't hold out much hope. He did mention that anxiety can cause some of these symptoms, but didn't think that was it in my case. I agree with mkmoh that that almost seems like a cop-out coming from a non-psychologist/psychitrist. However, I do have a friend who had straight-forward vertigo and it did seem to turn out to be related to stress and anxiety about his job, so who knows! Everyone hang in. Maybe we'll get answers and relief soon. Good luck!

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