Many Symptoms, yet to find a diagnoses.

[Sings4GodsGlory]

For the past two and a half years, I have had non-stop dizziness, and high pitched ringing in both of my ears. I've been to over 16 doctors, Neurologists, ENT's, cardiologists...gone through a ton of tests, eng's, stacked abr's, MRI, CT scans, and some I can't even remember.

The dizziness and ear ringing is always there at a baseline, and it gradually worsens and then gradually recedes to the baseline again. When the dizziness gets really bad I can't really do anything besides sleep. I can't concentrate on anything. These episodes of greater dizziness usually last from 5-7 days at a time. Making school, and a normal life impossible for me. It's very hard, the only thing I can joke about is that I missed my awful freshmen year of High school, and I pray that I'll at least be able to go somedays for my Sophomore year this year.

Is there anyone else out there who can't figure out what's going on with them? It would be nice to know that I'm not the only person going through something like this. Or do you have any idea's? I am open to hearing anything that I might be able to tell the doctor's about, to lead to an answer! And if anything, just some people to talk to, other than my parents would be wonderful!

Right now, they are suggesting an eeg? Don't really know what that is...

 

[IndomitableAmy]

I'm not going through something like that, but I have a disease that produces strange symptoms on a unpredictable schedule. I can identify there. I suppose I, too, am missing a "normal life". But hey, we're living hm?

EEG.. eh.. electroencephalo-something. Like an EKG, but for your brain. They put electrodes on your scalp and the machines record your brainwaves. (An EKG is going at the same time, too, I think.. but I don't know what that has to do with it.) Most of the time you lie back with your eyes closed. Sometimes there's a strobe light and other times you have to hyperventilate. Probably other stuff, too, but that's all I can remember. Not nearly as annoying as an MRI. The worst part can be washing off afterwards!

I hope the best for you, I really do.

 

[sinnergalore]

I had a similar situation.... I was sent to Neuro and EENT. Got all the tests done. They found nothing. They said it might be some type of stones in my ear canals or whatever. I had the vertigo so severly I couldn't walk, Id literlly fall down when I stood up. It was miserable. My neurologist tried a few different anit-deppresants. They're CNS depressors, so it helped a lot with the vertigo. I stayed on them for about 2 years, but I weaned myself off because I didnt ike taking daily pills. And the ringing is still here, I just live with it.

 

[LadyNRA]

Yeah, I was gonna suggest something to do with the inner ear. Long term infections are one thing. There are also some diseases that effect the inner ear and cause dizziness/vertigo. Wish I could help but I don't know of anyone with this problem aside from a friend with Meneir's syndrome (sp?). She has ringing and has hearing loss in that one ear and occasionally has balance issues because of it.

 

[hsmommyofmany]

sings,
i just want to let you know that i am going through a similar situation. i have also had multiple symptoms over the last 2 years that no one has been able to diagnosis. i have seen many doctors as well. it is a very tough road not knowing waht is going on with your body. i am now taking medications that are helping with some of my symptoms but my neurologist is just waiting at this point. the closest disease that fits my symptoms are multiple sclerosis or some autoimmune disease but neither of these have been proven through positive test results. we will see what the next few years bring i guess. just know you are definately not alone. God bless you in your search for answers and peace.

 

[Hadassah]

Have your thyroid checked (ultrasound and bloodwork). Ringing in the ears is one of the many symptoms of thyroid issues. It also is a symptom of a myriad of auto immune issues.

I have had it my entire life, and we don't know why. I have a smaller thyroid, and the only time it gave me issues was during high stress times and the last stretch of pregnancy. I bounced back after that but still have the ringing in the ears. I just tune it out most days.

 

[LadyNRA]

I will say it's sad that the medical profession, after charging us all a BUNDLE, often can't quite figure out what's wrong. I have a feeling that a lot of us out there are faced with undiagnosed medical issues. I'm one, my daughter is another, and she's only 17 (as of 2 days ago). She just got migraines rediagnosed (all docs said so but this time it was through a pediatric neurologist) but she gets lots of belly pain, nauseated by lots of foods (they say it's a combination of abdominal migraines and IBS) and a very distinct lower right sided pain that no one can figure out aside to say it isn't appendicitis (I'm wondering if it's ovarian). So she and I have lived most of our lives with chronic pain (I have IBS and occasional left sided pain not exactly related to the IBS with the later never being diagnosed accurately.) With my daughter, I'm gonna start her on the pill and see if it helps like it helped me. What I wouldn't give for a team of doctors that could make the diagnosis journey quick and definitive.

 

[KRAZYCAT]

Hi,
I know you said you have been to a lot of Dr. but have you been to the dentist? It sounds like TMJ. You should chk it out.

 

[Melethiel]

I will say it's sad that the medical profession, after charging us all a BUNDLE, often can't quite figure out what's wrong. I have a feeling that a lot of us out there are faced with undiagnosed medical issues. I'm one, my daughter is another, and she's only 17 (as of 2 days ago). She just got migraines rediagnosed (all docs said so but this time it was through a pediatric neurologist) but she gets lots of belly pain, nauseated by lots of foods (they say it's a combination of abdominal migraines and IBS) and a very distinct lower right sided pain that no one can figure out aside to say it isn't appendicitis (I'm wondering if it's ovarian). So she and I have lived most of our lives with chronic pain (I have IBS and occasional left sided pain not exactly related to the IBS with the later never being diagnosed accurately.) With my daughter, I'm gonna start her on the pill and see if it helps like it helped me. What I wouldn't give for a team of doctors that could make the diagnosis journey quick and definitive.

That actually sounds a lot like what I was going through the past several months, including the distinct RLQ abdominal pain (which I also thought was possibly ovarian) and the IBS-like symptoms. I finally did get a concrete diagnosis (advanced hypothyroidism) a week ago, when they thought to check my thyroid function after I suddenly got anemia. Have you had all the blood tests done for possible endocrine issues?

It also wouldn't hurt to get her checked for an ovarian cyst, as that can also cause similar symptoms.

 

[Dogperson]

The vertigo & ringing in the ears sounds like Meniere's Disease to me, which sounds like a scary name but is just an inner ear disorder. Has anyone tried Antivert or the generic Meclizine for you? I used to have problems with fluid building up around my inner ear & you can now buy Meclizine over the counter & it really helped me. In the past year that I've been on allergy shots I haven't had an episode of vertigo although I have had some mild ringing & occasionally one of my ears will seem to stop up for a minute like they do at a high altitude. A couple people on my husband's side of the family have Meniere's & they take the same medicine for it. If you do happen to also have allergies, the shots might help because they will reduce the amount of fluid that builds up in your ears. There is also some sort of patch you can wear, like you can put on for seasickness. I tried it once & didn't like it as it made my legs feel heavy. The Meclizine can be sedating but I found that I could take one & then try to hold my head still for a while, preferably with eyes closed, & then later resume activity. As long as I stayed busy I didn't get sleepy. Hope you get help real soon.

 

[bliz]

Hi, Sings4, how's it going?

I've been on a disease hunt myself, for the last few years. So sorry the hear someone so young is going through this. If there's one crazy thing I learned, it's that you the patient have to keep "driving the train" if you want it to get anywhere.

The guys in the white coats said, "Come back and we'll retest you in a year." But I was not satisfied that they were even looking in the right place, so I started all over again with a different neurologist, and got some place different. I'm still waiting for a call back from the first bunch of white coats.

Everyone kept reminding me that as this disease progressed, I developed more symptoms, which meant more clues for them to work with. As it's turned out in my case, some of the weirdest, fairly insignificant symptoms I debated even bringing up, were some of the most unique clues that helped them hone in on the diagnosis.

Stay in the Word. Work on your prayer life. God wants you to do right now even with these problems.

 

[Faythe]

Hi I just want to say it stinks to have something they can't diagnose. It makes you feel like you're crazy sometimes. We all want answers, especially when our symptoms make us incapacitated.

I was 12 when I got sick. The closest they can nail it is Lupus and Fibromyalgia. I missed all of fifth grade. Luckily a year later I went into remission and stayed that way til I was 32 after having my twin boys.

It's hard to be sick at any age, but I think it is sadest when it is a young person like you because generally no one else your age that's around you are sick. I get the part about wanting to talk to someone besides your parents

My prayers are with you and I hope they can find something wrong that can be fixed really soon.

 

[Tenkuh]

Two things come to mind.

First, my mother had a similar problem which lasted for a year until she saw an "ear, nose, throat" doctor who diagnosed her with a dislocated jaw. My mother could still eat and talk despite the right side of her jaw being dislocated! Her symptoms was ear pain, ear ringing, and dizziness. She had to have surgery to fix this.

Second, I thought of a CSF leak. That's cerebrospinal fluid leak. Symptoms of this can include dizziness, headache, ringing in ear(s), (sometimes) nausea, (sometimes) stiff neck, and sensitivity to light, and (sometimes) a metallic taste in the mouth. These are just some symptoms. A person with a CSF leak can have all the symptoms, or just a couple of the symptoms. It varies from person to person. The metallic taste in the mouth does not always occur, but when it does, it is almost a given there is a CSF leak.

That's all I can think of. Hope it helps.

 

[MichaelSGreen]

I can answer your question with GOD BASED MAGNETISM. This free information can be read on my website. Also read GOD BASED MAGNETS.

 

[Restrain]

The dizziness is Menier's Disease. Only way to handle it is management. Dramamine will help with the motion sickness caused by the fluid build-up. I keep a nausia medicine in a applicator to apply to the wrist to deal with the nausia. I had an attack the other night when I was asleep. Strange dreams! But made it through. Go see a ear specialist. There can be a help by installing drains like for kids with ear infections to drain off the excess fluid, but no guarantee.

 

[drjean]

It sounds like TMD to me, too. See an orthodontist that is specialized in tempomandibular joint dysfunction.. the jaw.

When I was disabled, the industrial accident caused (among other things) my jaw to go off it's hinges. I've had 2 surgeries and see the DMD regularly to build up my back teeth to hold the jaw in place... when it's out the tinnitus is deafening...and indeed I am hard of hearing because of this... I also have Menierre's... which is causing the vertigo etc on top of the tinnitus...(and at times total deafness) but the ENTs should have been able to DX that so...see the Dentist/Orthodontist who can do films and prove you aren't crazy (though it makes you feel like it, I'm sure).

I thank GOD that the first physical therapist I saw after my injury had just returned from the "new" (back then) discoveries and modalities for TMJD..and he knew a dentist who had also trained in it.

 

[MeloMom]

Actually, I had a similar type post and had deleted it, because no one responded! I would like. To chat about this with you. I have been suffering 3 yrs almost to the day. And have had many tests and specialists, and am "textbook normal" but I am not normal at all!I was given the diagnosis of chronic fatigue syndrome. Meaning- we don't know what is wrong with you so we will call it "this"...and reading everyone's posts I feel not so alone either...I think it helps if you canfind a Natropath-. They can find obscure causes including adrenal fatigue or vitamin deficiency, etc.... I'm sorry to be clueless about a specific answer but u r definitely not alon

 

[Paul01]

I've had dozens of symptoms over the last 5 years or so, all of which have probably been due to anxiety in my case. Every doctor visit reveals nothing. It's a constant battle.

 

[MeloMom]

deleted

 

[Aspireman]

Feel for you all. I'm in the same boat. Mine's brought on by movement (shadows, reflections, slight head movements, etc). Big stores are a no go without a mobility cart. I'm hoping there's an answer for all of us. Till then I pray that God will help us through it.