Putting this out there to see if anyone else has similar symptoms and has had any success with a diagnosis. I've been going through the health care system for almost a year and have gotten nowhere fast.
I'm a 39-year old male who has always been very active - hiking, martial arts, snowboarding/skiing, etc. Since my symptoms started I've had to cut back almost everything and I'm going crazy.

It all started about a year ago with a light-headed feeling that wouldn't go away. It slowly progressed to tinnitus, fullness in the ear, varying hearing loss, random positional vertigo, facial pain, arm numbness, lower neck pain, etc.

I've been tested by almost everyone and had varying diagnosis. Originally thought it may be menieres syndrome but hearing tests show high frequency loss which is more common with peripheral or CNS lesion. My neck has always made strange noises and ocassionally, when I turn my head quickly, it hurts like hell and I almost black out.

I see a neurologist next week (family doctor and 2 ENT's have given up) but was wondering if anyone else has gone through a similar situation. Every time a see a new specialist it takes 2 months to get into the door (I'm not fatal and have "managed" health insurance) so was hoping to have as many questions as possible lined up.

My thanks in advance to anyone with any input who decides to respond to this post.

You are doing the right thing by seeing a neuro. I have dealt with disk, and strained muscle problems, the disk problem caused pain, tingling, and numbness, the muscle spasms caused pain, numbness, tingling, dizziness, and light headedness. Read my answer to nate930. Some of your symptoms sound very familiar to mine, which is muscle strain, and fixed with physical therapy. If your neck muscles are in spasm, they will be very tight, cause pain, dizziness, feeling of being off balance etc. If the neuro. finds it is a muscle problem, I would suggest going to PT right away, as this is the only treatment that helped me. Good luck

Thanks for the reply Kamden. I've actually seen your response to other similar questions and hope that it's a muscle problem that could be corected with physical therapy. If you're still out there, I'm not familiar with physical therapy and was wondering if there is something specific I should be looking for. I mean, are we talking about massage, neck exercises, what should I be looking for?

Also, have you ever gone to a chiropractor? I've read many posts where they can actually worsen the situation but that seems to be with disk problems and not so much muscular problems.

Guess I'll find out more next week. Here's to all the dizzy people!

I have more than 20 years experience with chiropractic adjustments and would recommend physical therapy over the chiro. Here is why. I got much quicker, longer lasting relief from PT, where with the chiro., my back or neck just kept going right back out, because these problem muscles are pushing it right back out, so you need to get to the source of the problem. With the chiro. I was getting the end result taken care of, but not to the root, which was my muscles. PT for me involved soft tissue work where they kneaded the knots out of my muscles by hand. I have so say it was very painfull, yet helped me more than any other treatment. If you find that your problem is muscle related, you would need this soft tissue work done on you. As far as exercises go, I don't recommend these untill you have all the knots taken out, because stretching these muscles too soon can aggravate the problem, as this is what usually causes the problem in the first place, overuse of them and stretching them beyond their limit. I am not saying not to go to the chiropractor, because I have gotten some relief from them, but it was temporary. I believe if you would like to go to one, you really need to combine that with PT treatments and get everything taken care of, so it doesn't keep popping back out. This is what I did at one time and it worked, but if I had a choice, I would still only go to PT myself. I hope I have helped you.

Kamden: Thanks again for your replies and insights. When you go to the PT, do feel the way you used to or is it moderate relief (I'd take either) and how long does it last? Is it something that's covered by insurance or do you pay out of pocket? You also said in your last post to avoid exercise that may tighten the neck. I try to do allot of streching and body weight exercises (hand stands, push ups, squats, back bridge, etc.) and have found that it does aggravate my condition sometimes yet at other times I feel great. In fact, I had a pretty intense workout last night and feel like crap today - bad positional vertigo when looking up or down, didn't sleep much, look kind of silly sitting at my desk looking straight ahead, etc. But I cant believe not exercising is better for you. I guess these are all things I need to sort out. Hope to hear from you.

Kamden: Sorry, but I forgot to ask you another question. I've read allot of information out there about people developing allergies that cause inner ear problems with many of my (and your) symptoms. One ingrediant found in most of our processed foods, other then sugar, is corn and it's amazing how many people develope an intolerance. Wondering if you've had any experiences in this area. Just trying to cover all my bases. Thanks.

HI,
I HAVE HAD SIMILAR PROBLEMS. I WAS DIAGNOISED WITH MINERES (SPELLING?) DISEASE. I FINALLY GOT RELIEF FROM A PHYSICAL THERAPIST WHO PERFORMED CRAINIAL SACRAL FROM THE UPLEADGER INSTITUTE. WOW. IT HAD TO DO WITH MY HIP AND TEMPORAL BONE. GO FIGURE. IT WORKS WONDERFULLY. THEY HAVE A WEB SITE FOR THE SCHOOL SO YOU CAN FIND SOMEONE IN YOUR AREA. IT WOULD BE COVERED BY INSURANCE IF YOUR THERAPIST IS COVER BY THE PLAN. GOOD LUCK
KRIS http://www.healthboards.com/ubb/smile.gif

rGraf8, I started feeling relief right away when I went to PT, because it was just muscles in my upper back and neck that were causing the dizziness and lightheadness. I would say I probably went about 10 times for these symptoms, and yes it was covered by insurance. I called my doctor and asked to be referred because I recognized my symptoms and knew what treatment I needed. I got complete relief from my symptoms. The reason you feel fine one day after your exercise and not the next is because our muscles tighten and loosen on their own. Once they are worked on, you shouldn't have that problem. Also, if you like physical activity, go ahead and keep it up while going to PT, they just work on the ones that have tightened up after it. Exercising is good for you, it was not for me in the shape I was in after the accident and they had me do some way too soon. You sound like you are very fit otherwise so i wouldn't change your routine at all, this suggestion was for somebody in the shape comparable to the shape I was in after my accident. About the allergy and inner ear problems. Allergies can make you lightheaded, tired and cause ear fullness and usually you have nasal symptoms too. I also have allergies and all these symptoms from them, but there is a difference in the symptoms. If it is caused by allergies, the dizziness would not be positional and it is positional when you have the neck and back problems, which is exactly what I had. I would lean slightly to one side and get dizzy. Inner ear problems usually come with nausea and the dizziness is a horrible spinning sensation. Also with my allergies, I have such horrible nasal symptoms, that I can tell what is causing my lightheadedness, because I will have ear fullness, swollen sinuses, sometimes a headache etc. From what you have said about your muscles, I would not doubt that these are the source of your problem. But be your own judge and see if your symptoms are worse when you have the muscle problems or worse when your allergies act up. Hope I have helped you!

Kamden and Kristeen: Thank you both for your insights and taking the time to respond. I'm sure you both know, as does anyone out there with similar symptoms, how frustrating and depressing it can be when you're chugging along through life, having a blast, and wham, one day you look up in the air and fall over because everything starts spinning. Then you go from specialist to specialist over the course of years and nobody can tell you what's wrong. This is why I pay $350 a month in health insurance for me and my family? I've always been very healthy (god bless) so this came out of left field. Then, since nobody really knows what's wrong, they just keep digging and digging and end up finding all kinds of other things wrong that I really didn't need to know about but know think about. It's a vicious cycle that can get to you if you let it.

Anyway, for anyone else reading this and having similar problems, please keep the following in mind. You're going to have really bad days that totally suck but you're still going to have many more excellent days then bad. We used to have to spin around as kids to get this sensation, now we're lucky enough to get it with no work at all. Learn as much about what's happening to you as you can and pay attention to what your body is saying, nobody else knows and doctors are only guessing. Keep an open mind. If a doctor tells you something you don't agree with and won't listen to you, get a different doctor. I will get better, somehow, someway, someday.

The above was probably more for me than anyone else but I hope it helps someone. I'll let you know how the neuro goes. I'm feeling relatively better today so I think I may just toast all the dizzy people tonight.

Dear Rgraf8, I just read your post from 10/01/02 so I don't know if you'll read this but I think it's worth a chance. I've had your exact symptoms, tinnitus, fullness in the ear, hearing loss (I think it was high frequency), positional vertigo, and neck pain. I didn't have the facial pain but I do get headaches. I was recently diagnosed with a rare disorder, an Acoustic neuroma. It's a benign tumor of the eighth cranial nerve. Because it's so rare it was found by accident when I had a contrast MRI. Ask to be checked for this. Please let me know if you receive this note. I wish you much luck!

Sukers: I just stopped by the board on a whim and saw your post. Thanks for responding and I'm sorry to hear about your acoustic neuroma. I was also checked via an MRI (w/ contrast) and came back clean. I've been diagnosed with myofascial pain syndrome which is the muscular knots and tightening you've probably seen in some of the other posts. My original symptoms are responding fairly well to physical therapy but they unfortunately "unlocked" all sorts of trigger points in my upper back quadrent. I'm now the lucky owner of constant shoulder and arm pain (haven't been able to use my left arm in 6 weeks and it's shrunk to half its normal size) but even that's starting to respond to therapy. The worst part is called dry needling. They stick you with pins and move them back and forth until the knots release. Hurts like hell for a couple of days then some relief but I need to go back in 2 weeks.

Anyway, how are you feeling? Are you scheduled for surgery? What's the prognosis? I've read all about acoustic neuromas in my quest and know they can be scary. Let me know what happens and good luck.

Happy Holidays to anyone reading this post! God Bless.

rgraf8,

I'm sure you have this all worked out by now, but I wanted to share my experience with ya...

You said that you had "light-headed feeling, tinnitus, fullness in the ear, varying hearing loss, random positional vertigo, facial pain, arm numbness, lower neck pain, etc."

Well, I also had all the same symptoms (but the facial pain included muscle spasms around the eyes and jaw). And I had light sensitivity and headaches. I'm now being treated for TMJ by a dentist that specializes in head/facial pain.

I originally went down that route of ENT, but was given a hearing test, diagnosed with "unspecified tinnitus" and sent on my way. My hearing test results were similar BUT my ENT and audiologist indicated that the hearing loss of the high frequency probably resulted from the tinnitus (my tinnitus resulted in hearing the high pitched noise that people hear when they're on an airplane.) I couldn't distinguish the tests high pitched sounds when I hear them all the time http://www.healthboards.com/ubb/smile.gif

So, I wanted to provide ya my experiences (and being treated for TMJ) in the event that it might help ya.

And I'm also going to check into some of the things you checked into... just in case it might help me.

If you have an update, please post to let us know.

Thanks!

Ingrid.

Hi rgraf8, Megan here http://www.healthboards.com/ubb/smile.gif

For about, maybe a year now I've been experiencing some of the same symptoms you talk about. And too, I will get the strangest feeling in my head and all I can say is that it has to be as close to a seizure as you can get without having one. It's the strangest sensation and I cannot explain it to anyone. At any rate, about a week ago I noticed a sunken type area just below the crown of my skull, or maybe it's just swollen on either side, anyway it bugs me and I need to know what's going on here too. My head feels like it's constantly got pressure on it and I've been experiencing dizziness, nausea, and tenderness in the back of my head. I'm going in for a CT Scan either today or tomorrow, maybe something will show up. I really wanted to offer moral support to you my friend and let you know that I too, most definitely have that horrid pain that hits the neck when you turn it too fast. I've never found anyone else who experiences this, so I'm glad to meet you http://www.healthboards.com/ubb/smile.gif It's like an electric shockwave runs into your brain and you do feel like you could pass out from the pain! I have that exact same pain sometimes... Maybe we're two of a kind...

Good luck to you and I pray you get to feeling better soon and get some answers...

Megan

Ingrid: Thanks for your words of wisdom and support. I've actually had a lot of success with the physical therapy and dry needling. Most of my symptoms have been resolved completely or in part, I'm still fighting the tinnitus and occassional ear fullness, which my neurologist says are the hardest to get to. As a refresher, my neurologist originally thought my symptoms are from myofascial pain syndrome, painful muscular knots that can cause a host of symptoms (this was only after I was tested out the wazoo for everything else by everyone else). Nobody is sure how the knots develop - injury, stress, age, etc. - and the tricky part is that they cause refered pain so a knot in your neck can impact your inner ear and so on. They've gotten pretty good at defining which symptoms are caused by what region has the knots. I've read quite a bit on how TMJ is a form of this syndrome and people have responded well to therapy. You might want to look into it.

Megan: Thanks also to you for your words and I hope you feel better. You're doing the right thing by having a CT Scan to rule out anything major. You might also want to look into an MRI if you continue with the balance problems to rule out the major issues like tumors. The depression on top of your noodle doesn't sound good and I hope it's nothing. I understand from my neurologist that the pain and blacking out feeling when turning your head quickly is from the nerve getting tweaked in the spinal cord. Told it's no big deal and to stop turning my head quickly. Most of my other problems have been significantly resolved after 2 months of physical therapy and 2 dry needling sessions. Read some of the other posts here to find out more. I hope you feel better.

Rolph

Dude i pretty much had what you had form when i was 3 to 14.

Its like a weird type of migrain. Thats what it sounds like to me.

Mine would make me light headed, then i would get crazy ass dizzy, lights would borther my eyes, noise got loud. and the numbness thats another symptom of migrains.

I went though Dr.'s for years and cuz i was a little kid it scared the **** out of me and gave me some mental problems. I got some medican called Immiprimin. What it does is increase the seritonin in the brain, that stuff makes you happy. Somehow theres a link with that and migrains so take some of that stuff. I still got Migrains but they weren't bad i never got dizzy just a little light headed. Now i dont have them anymore.

Mine would come every 3 months and the whole thing would last like a week or two. I would feel light headed and kinda weird, and it would get worse and worse and worse then i would get dizzy, get the bright lights vomit. I puked like 20 times one night when i was in the 6th grade. Good luck i hope you read this.

Hello folks, I've had very similar symtoms to the original poster for a couple of years now, with the exception of facial pain, though a very stiff jaw at times. My neck also gets very weak and its sometimes hard to hold up my head. I've been through a couple of doctors and one neurologist all to no avail. Has anyone noticed a correlation with stress and symtoms? I have noticed that all my symtoms worsen when I'm under stress. I assume that the neck muscles tighten up at this time causing things to worsen. My last MD unfortunately blamed everything on stress after I mentioned this to him. All progress seemed to stop at that point. I have found temporary relief from applying a very hot heating pad to the neck and using swimming as a low impact excercise. Anti inflamatories have also brought temporary relief at times.I've enjoyed this discussion and because of it will be better prepared for my next neuro visit in Feb. Best Regards
Ken

What's up ospray,

Just read your post and yes, stress made my situation worse. I also noticed that I was more sensative to low pressure systems. The reason in my case, and possibly yours, is that the pain and balance problems are the result of a muscular disorder as discussed above and stress tenses the muscles and exaggerates the symptoms. It is commonly overlooked by the "medical community", but assuming everything else is fine, should be further explored. The neuro is your best bet, but if your particular doctor doesn't believe in myofascial disorders, I'd try seeing another. The only reason I keep visiting this board is that I'll never forget how scary and painful this disorder has been and how frustrating it can be getting a proper diagnosis. By promoting and discussing what worked for me and some others I can only hope people get relief quickly and effectively. Good Luck.

Hi rgraf. I've had many of the same symptoms you have had for about 3 years now, but I haven't had anyone who's been able to give me a diagnosis. Basically, I have a feeling of fullness in the ears and head, constant lightheadedness, inability to concentrate, feeling of shortness of breath at times, and fatigue(muscles easily burn and become tired/sore, but also find it hard to hold my head up). I also get a kind of dizziness sensation. It's hard to explain, though. It's not really dizziness, it's just kind of that feeling you get in your head when you are dizzy. My equilibrium seems to be a little off. Like I can't tell whether or not I'm bobbing or rocking my head when I'm sitting still. My head feels full and heavy. It kind of feels like, if you could imagine your field of vision as a poster, that someone is slightly bumping it or moving it. I feel like I'm tipsy, or high, or dreaming. I've had 2 normal MRIs already, along w/ normal blood tests, etc. I, too, notice that my symptoms do get worse when I get nervous or stressed. My doctor seems to have dismissed all of this as stress, and told me to see a psychiatrist. So now they have me on an anti-anxiety pill, among others, to see if that does anything and so far nothing's changed. I do, like you did, wonder if it may be allergies, so I may go to another allergist. I just wanted to know how you were progressing w/ your treatment. Have you experienced significant relief for your symptoms? Do you still have to keep going to PT sessions? I'm running out of options here. I'm away at college, so it's hard to find a good doctor, or the time to see one. I can really only see one when I go back home on weekends. Needless to say, this really interferes with my studying, as I'm sure you know full well what a real nuisance this can be. Any of your thoughts would be really valuable to me. Thanks alot.

Ryan

Thanks to the original poster of this topic !!!! You might just has saved my mental sanity !

It's started as a labyrinthitis, diagnosed two weeks ago. Since the pain in my neck wasn't really bothering me at the time, I forgot to mention it to the doctor I first saw. Since then, my neck hurts like hell (I can even put my finger on the muscle knot), I have positional vertigo / balance problems, I hear a constant high pitch tone in my right ear and sometimes, things start to spin a lot.

It really started several months ago, with constant headaches and pain at the base of my head. Numbness and pain in the face, right side as well. We all (doctors, chiros and myself included) blame it on my newly implanted braces. Now, it may be related, but the next step I'll do is to seek my doctor and tell him everything about my neck and facial pain, along with the numbness in my face and head.

I had a bad car accident 5 years ago and since then, all sort of muscular and back problems have been popping out, once in a while. Reading your story made me realized that this might just be a case PT again !

Thanks a lot !!!!!! I thought that I was going to turn crazy. I was, like you, a very active man (3x gym / week) plus lots of readings, video games, etc. All things I can't really do now because of my almost constant dizzyness.

Ray

Ryan: Sounds like we've travelled similar paths. I stayed away from the meds to this point. They wanted to put me on some kind of ant-depressent called Eleval (sp?) but I refused since I wanted everything working as I went through PT. To answer your question, PT worked wonders for me. I had to go about 15 times but haven't been back in about a month and am still feeling good. I also went through a process called dry needling 2x which made a huge difference but is a very painfull process. The only thing they haven't been able to get rid of is the tinnitus but I'll take it compared to the way I felt not too long ago. I still get tightness in my neck and upper back but can usually get rid of it by doing the stretches listed in this section (I just brought them back to the top). Doing them daily is key.

Ray: Maybe we're just both nuts - HA,HA. The worst part of this whole thing was that nobody knew what was going on. Sometimes just finding out the cause can make you feel a hundred times better. I'll never forget how miserable I was and that's why I keep checking back to see if there is some way I can help someone else. As you've read, all of your symptoms can be explained by a muscular disorder. As long as nothing else is wrong, there is relief. Not being able to be physically active sucked. I still haven't gotten back into my martial arts training but started doing yoga about 2 months ago and it made me feel great. My left side is slowly comming back (I lost about half my muscle tone due to nerve problems)and I can actually bang out about 15 pushups (6 months ago I could do 40-50, 2 months ago I couldn't do any. I would STRONGLY recommend yoga for anyone having muscular issues.

Real quick story. Finally felt good enough to go snowboarding 3 weeks ago. Showed up at the mountain with my son, put our boards out back and went inside to put our boots on. Came out about 5 minutes later and someone had stolen my board. Makes you wonder what's around the next corner. Anyway, got a new board on ebay and it came last night so I'll finally get to go this weekend (with a lock) - WooHoo!

Be well everyone.

Thanks rgraf8 !

...You wanna know something ? This morning, as relieved as I was knowing what was wrong with me would soon find its way out of me (I'm a very positive guy when dealing with medical issues, I tend to believe there's always something that can be done about everything, relief or cure), I felt on the ice ! I live in Montreal and two days ago, we had icing rain.

When I ended my fall, I heard a big "crack" coming out of my right foot. I lost consiouness for a certain time, caused by the unbarable pain. Then I went to the emergency. They diagnosed no broken bones (I kind of felt lucky you know...), only a severe injury to the muscles surrounding my right ankle. I'm on crutches for the next two weeks. So, you're right, you never know what awaits you on the corner... :-)

The funny thing is, my head hasn't spun a single time today ! Can you believe that ? It takes a greater pain to get rid of the smaller ones, my friend said... (he's a sick guy !!) So, my plan to seek a PT ended shortly after it's got into my mind. Although I may need to seek one, this time it's going to be for my ankle, if it doesn't get better in two weeks, doctor said. But I will seek one for my neck, that's for sure ! It's only a matter of time !

Thanks again, you're a very nice person !

Ray

i have the same problem took 3 mos .went to neurologist in oct. mri of cerv.spine showed a problem @ c5-6 level with mild cord compression

will not operate @ this time i am a little better ,but still having problems
good luck
rws

Hello everyone!!
First off, I can't tell you how RELIEVED I was to read all of your testimonials - I have had the same exact symptoms for ~9 months now (tinnitus, ear pressure/fullness, intermittant hearing loss,dizziness, headaches so bad I can't put my head down, and problems w/ memory& concentration) -it's really been a frustrating ordeal. I've been to ENT specialists (Harvard University grads!), had CT scans, blood tests, etc and no-one had any explanation for it, or could offer any advice or help. I haven't lost total faith in the medical community, but I certainly don't rely on them entirely.
Anyway, I've also been to my regular Dr about these symptoms several times, and she doesn't know what to do. I've started to think that I must have a rare disorder, or I'm going crazy or something - but I'm embarassed to see my doctor about this again.
I actually have some really good news!! I'd like to share with you a couple of things that have brought almost total relief to me this week, and might be worthwhile trying for yourselves.
Earlier this week I took 2 decongestant (pseudoephedrine) tabs and an ibuprofen tab - and it worked!!! I was a new person! My symptoms went away (almost 90%) and I regained my concentration. The reason I took the decongestant was because my nose was a little runny from the cold that morning, and when I went to blow my nose, my ears popped and crackled - but didn't clear. I though it'd be worth a shot to try a decongestant- and it did help!!!
I've been taking 2 decongestant tabs each morning for the last 3 days, and I'm feeling so much better now.
I'm going to mention this to my doctor because I'm concerned that my ears aren't draining properly. I've heard of this happening to some people (mainly infants) and tubes need to be surgically inserted into the ear canal to drain the x-tra fluid.
Best of luck to all of you!!
There is hope...

Hi, Rgraf8,

I was involved in a car accident two months ago, I had a tinnitus (ring in the ears) since then. My tinnitus is a kind of extr-high frequency noise.

I was in the front passenger seat. I was blanked out for a short time, two airbags deployed.

I went to see many doctors, including two ENT doctors, but they did not give me a diagnosis. I took CT and chest X-ray, both OK, hearing test is also OK.

Do you think it is similar to your problem? Actually I never go to see a neurologist, I thought it is a ENT problem before, maybe I need to schedule one.

How is your tinnitus now? Did you do any accupuncture?what is dry needling?is that effective?

Does anybody have the same experience with me? Could anybody give me any advice?

Thanks

Mike