What is wrong?

[Jgirl]

For the past approx two years I have had symptoms and problems that I don't seem to be able to get an answer for.  First, I get extreme dizziness on and off all day long sometimes it stays all day the extreme part started about a year ago but I have had dizziness on and off for about 7 years now.  Sometimes it happens when after my neck where my head meets becomes real  stiff and other times it happens when I move my head and other times it happens when I move my eyes to scan the room or a page in a  book and other times it just happens.  I sometimes get general weakness and a feeling of lightheadeness (feeling of going to pass out). Numbness in patches (legs, back, face, arms, hands etc.) comes and goes and muscle twitches (that are not painful)come and go.  They all come and go within a day they usually don't last all day long except the dizziness.  When my head gets really stiff it will cause me a headache that makes it hurt to even move my head and occ. blurred vision.  I have had an mri with and without contrast, they found a small focal point of possible gliosis or ischemic vessel change but that was it and they also did an mri of the spine which they found a presumable cyst that was pushing my cord off slightly to the left with some narrowing of the spine T4 & T5 area.  My doctor has ran blood tests as well and I have a sed rate of 39 but everything else in the blood work was normal.  He was trying to rule out MS, RA, etc and he said he did.  Occassionally I get chest pain that runs down my left arm.  I have also seen a cardio for rule out. I am 32 years old! Help

[CCF-Neuro-M.D.-CS]

It is impossible for me to render an accurate clinical diagnosis over the internet. Your stroy and symptoms are very complex, but here are a few thoughts. Formal evaluation of your vestibular function may be of help. This may help isolate which region of the balance center is not working properly. It is possible that all of the symptoms you are describing could be related to cervicogenic migraine or complicated migraine. Both of these headache disorders can cause varying neurologic symptoms. The fact that your MRI was negative for lesions consistent with MS is good. Another possibility is a mitochondrial disorder (abnormality of the bodies ability to generate energy).

The best  adivse I can give at this time is for you see a neurologist at an academic center. If you are in the area we have excellent neurologists who could evaluate you and if needed perform the special vestibular testing.

[dizEmman]

It's good to know that I'm not alone.
I usually just lurk through these forums, but your condition is so similar to mine that I had to respond (and register to do so.)
I have the same exact symptoms, and they have been constant for a few months now - been through more tests than a lab rat, but on paper I'm ready to run a marathon: Nothing "wrong".  So today I took the psyche route for the first time and am giving Zoloft a try.  Even if that only helps a little, I'll be happy...

"Keep in touch"
I noticed in a lot of these threads there are some good posts, but no followups (at least not easily found) of what happened a year later. It would be nice if there was a "whatever happened to" section. For example I saw some posts (I think it may have been on another forum) from 2000 that matched my symptoms... Did that person recover so well that he/she can't be bothered with following up - or did his/her condition deteriorate to the point where they can hardly type. ?

DizE

[Jgirl]

DizE,

I sure will, I'll let you know what I find out, maybe it will help you also in some way!

[jmva]

I have similar symptoms.  Mine started 5 years ago and I noticed it most in the grocery store and at the mall.  In March my balance seemed off and I am now not comfortable going to most stores.  Driving feels strange too.  My condition seems to start with my eyes and I feel visually overwhelmed when in a large store with flourescent lights.  Is there a diagnosis called sensory overload??  I am waiting for EEG results and my neurologist told me that if nothing shows up on the EEG we will do a remote EEG in which I will "wear" the electrodes to the mall and grocery store and brain wave information will be recorded on a disk!!  I think this is amazing technology and I hope I will find some answers...My life has been severely altered (I will be 42 on Wed.) and this doctor looked me in the eye and said, "I want to help you to improve the quality of your life."  I really think he meant it!!

[dizEmman]

Some more info:  
I'm 32 also and this started around November '02. It was on and off but then it (the dizziness/lightheadedness) became chronic (unbearable) around March.  I can't drive anymore (I can, but it's like a DUI/DWI feeling which I'm not comfortable with and I really don't feel like getting pulled over.)  I also have very low blood pressure (90/60 or less) but no one ever thinks that's a big problem.

I'm hoping to find someone that has gone through this and has found the cure (or something close to it).

I'm currently on Zoloft (just started it a few days ago and waiting for a miracle to happen) but I doubt it's "only" psychological. It seems too easy of an answer to write-off low blood pressure, for example, as psychological.

It seems like doctors are afraid to get sued and unless they see a huge lump growing out of your skull, they do not want to "troubleshoot the problem". Notice how much more info (good, and bad unfortunately) is available online when someone can hide behind a computer terminal without the fear of liability.

dizE

[jmva]

I have been experiencing a feeling of swaying side to side or sometimes forward and backward.  My head has been very sore and I am even having a hard time sitting here typing this.  My head feels very tight on the right side and the back of my neck is stiff.  My EEG was normal and I don't know what to do next.  My PCP (actually the nurse practitioner) suggested yoga!!  I am unable to drive or go anywhere and I could use a suggestion from anybody out there - this is very debilitating.

[MLH]

I started having similar symptoms in Feb. 2003.  I have seen
a ENT and a Neurologist.  All testing came back normal.
I could not drive, go shopping, or go to any public places.
My neurologist prescribed Lorazepam and it has made such a
big difference.  I also take Pannaz for my allergies/sinusitis.
I am now able to drive, go to the grocery store and other
public places.  I am not back to my normal self yet.  One Dr.
told me the best thing to do was to go outside and walk
on the sidewalk.  I try to walk everyday.  I also read
somewhere that if you rotate your head from side to side
while walking it will help 'retrain' your brain to process
information.
I feel like I have had to relearn everything.  I never
have found out what my condition is actually called or if
I'll ever be fully recovered.  
I notice that I feel worse when it is hot/humid or when I
am tired.  
I don't know if any of this info is helpful to anyone but
thought it might be.

[jmva]

Hi...Did your condition include muscle tension in your head and neck areas?  Also, how did you feel when you were shopping?  For me I don't feel panic, just visually overwhelmed and then my neck and head muscles start tightening up.  I had a work-up at a Vestibular Balance Center and am doing the Cawthorne-Cooksey exercises - I'm not sure if they are helping but the Dr. said it could take a few months.  I also just went to the dentist and I am apparently clenching so I now have a mouth guard which has relieved some of the jaw tension.  I don't know if my feeling of "swaying" will be relieved due to the muscles loosening up or not.  I am seeing my ENT Dr. today to ask about the possibility of muscles being so tight near the vestibular nerve that can lead to my unusual balance problem.

[MLH]

I don't recall having muscle tension.  I did feel like there
was fluid or something in my right ear.  Although the ENT said
that my ears looked good, my hearing is excellent and I had
normal results from the ENG test.
In the beginning of my illness I had problems with balance and
some dizzyness but no nausea.  
When I went to the grocery store, I felt like I was going to
pass out or fall down.  It did seem like visual overload.
I don't think that I was anxious or having a panic attack.
The neurologist said that the Lorazepam would help calm down
the inner ear.  Which really confused me since I was told
there was nothing wrong with my ears.  I think it had something
to do with the nerve connecting the ear and the brain.
I think the Lorazepam has slowed down the visual stimuli which
has helped my brain process information which has enabled me to
go to stores and drive once again.

[jmva]

Your condition sounds very similar to mine.  I have just started using a mouth guard for clenching (from dentist.)  There is a good chance that my rt. side head/jaw/neck tension is related to this!  I saw my ENT Dr. and he thinks that I have a couple of things going on.  He has ordered a CT scan to take a closer look at my semicircular canals - he feels that my sensation of "swaying" is vestibular.  I am already doing the Cawthorne-Cooksey exercises so I don't know what he will come up with.  I just want to be able to get in my car, drive to a store, go in, buy something and drive home!!  Is this too much to ask??

[fabergre]

I am just wondering if any of you have considered pursuing a second opinion by a chiropractor.  Chiropractors see thousands of patients with the same symptoms as you and may be of some help.

[jmva]

Actually the nurse practitioner at my Primary Care Physicians office suggested that.  I don't know what to expect from a chiropractor - maybe you can give me some helpful info.  My jaw is definitely getting better with the mouth guard but I am still having shoulder/neck tension and "swaying."

[fabergre]

A chiropractor will look at your history, physical exam, and other findings, and s/he will determine whether or not you will benefit from this form of care.  Chiropractic care deals with the spine and the nervous system.  A vertebra may misalign, put pressure on the nerves and/or spinal cord and cause symptoms similiar to what you have described.  Given you do not have any anomolies, the chiropractor will adjust the segments that have misaligned and hopefully relieve the pressure on the nerves.  This form of care is a very safe and conservative approach.  I believe it is worth having a consultation to see if this may help your condition.

[ooligator]

I was interested to read this thread, as I also have experienced the dizziness sensation you're all describing.

It started in December 2002, while I was driving the car, I was going through a tunnel, and felt like I was going to faint.  I pulled over, and my husband took over the driving.  But from that point on, there was always this dizzy feeling.  

It got worse in January, I wasn't able to work for several days.  Kept feeling like I was swaying, my head felt constantly "fuzzy" inside, shopping was a no-no as the fluouescent lights would make me feel like fainting, any constant noise or motion (cars, trains) would make me feel ill, and I felt like I would slide to the left when walking.  

I went to see my doctor several times. She tried various vertigo medications, which made it worse, did various blood tests for all sorts of things, which came back fine.  Then first referred me to an ENT specialist, who tried to tell me it was a panic attack, or my imagination, as he couldn't find any ENT related cause!  I then was referred to a Neurologist, who prescribed me Tofranil (Imipramine).  Though this was slow to start working (3-4 weeks) it did slowly start to take the dizzy feeling away.

After being on Tofranil for 3 months, he's started weening me off by halving the dose.  But I have noticed a slight fuzzy headed feeling returning.  So I suspect I may have to return to see the Neurologist.

The most frustrating part, is not knowing what's causing it.  Or why it suddenly started.  It's very good to know that there is medication that makes it disappear, but I'd like not to have to take the pills indefinitely.

[MLH]

Just wanted to provide an update.  About 2 weeks ago I got a cough and had a hoarse voice.  I suspected a virus so I waited for it to get better.  While I had this my dizzyness got so
much better.  I harldy feel that any more.  I am almost over the cough and the dizzyness is almost gone.  I don't know why
it suddenly got better with the cough etc.  
I am starting to wean off the Lorazepam to see if I will be ok without it.
The closest self diagnosis that I could find based on my own
research is vestibular neuronitis.  I'm not positive that's
what I have had because no Dr. ever confirmed it.  It is
very interesting how similar the symptoms for that disease
are to the way I have felt.
I hope and pray that the dizzyness doesn't ever come back.

[diz in seattle]

Wow, I have all of the symptoms you guys have.  I've been going crazy - I've been to every specialist too...  Only saving grace is that I have good insurance!
Have any of you had a history of migraines?  Tmj?  
Let me know how you are doing...

[anj929]

I seem to have the same problem as everyone else. I have been everywhere imaginable. Headaches, nausea, dizziness, etc...no one seems to think anything serious is wrong. I have had an mri and mra's of the neck and brain done, as well as a ct scan of the neck and brain. hmmmm....my ent says I don't seem to have a sinus problem even though my nose is always clogged. I wake up with a headache, it usually worsens throughout the day and makes me feel dizzy and lightheaded. I feel sick alot and get these tingling sensations throughout my face and hands. primary care doesnt seem to think they are migraines, not severe enough and not sensitive to light. i see a chiropractor he seems to think it is my spine. it has helped alittle but the headaches are still there. my neurologist put me on paxil. she seems to think it is all in my head...any suggestions??

[anj929]

I seem to have the same problem as everyone else. I have been everywhere imaginable. Headaches, nausea, dizziness, etc...no one seems to think anything serious is wrong. I have had an mri and mra's of the neck and brain done, as well as a ct scan of the neck and brain. hmmmm....my ent says I don't seem to have a sinus problem even though my nose is always clogged. I wake up with a headache, it usually worsens throughout the day and makes me feel dizzy and lightheaded. I feel sick alot and get these tingling sensations throughout my face and hands. primary care doesnt seem to think they are migraines, not severe enough and not sensitive to light. i see a chiropractor he seems to think it is my spine. it has helped alittle but the headaches are still there. my neurologist put me on paxil. she seems to think it is all in my head...any suggestions??