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Feeling dizzy and off balance since last 2 years

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RD13
RD13

I am male 33 years. Feeling dizzy and off balance since last 2 years. intially it was manageble but since last three months its making me disable. 

I made countless visits to doc office with nothing got diagonosys yet. I feel off balance like I am rocking although my body is still. I am facing following

- Lightheadeness, dizziness, off babalance often promident after sleep, i feel like I am in some bubble world. It brings episode of nausia.

- Heavy eyes, difficulty moving eyes. Vision has been degraded, blurred vision, trouble seeing in the night. Sandy/windy eyes. Difficult concentrating on computer screen

- Continues heavy head, sometimes front head, sometimes side or sometime back part of the head. Sometime get pretty bad headache.

- Trouble in coordination, feels like I will drop something that is hold in my hand.

- Slurred speech, During episode of off balance/diziness, I find difficult to pronounce certain words.

- Stiffed neck, although its not showstopper, but sometime I feel my headache is originating from there.

- I feel my legs are warm like I have fever.

I have consulted cardiologist, neorologist, ENT, opthamologist, physical threorapist, allergist and endochronologist, following tests has been done with nothing found except a little high blood pressure for which I am taking Biostolic 5mg since last three months. Also my cholestrol level is little eleveted.

Also I am suffering with episodes of ED since these sysmtop started two years back, its off and on, not sure its related to this.

- Stress test

- Echocariogram

- Heart CT - Calcium score is 0.

- Cardio Vascular ABI

- Hormone test - all hormones ok except testestorone low at 290

- Brain MRI without contrast

- Balance ENG test - Little BPVV identified on left year but Physical threoropist ruled out that after performing epley maneuver two times.

- Lyme disease test

- Allergey test - no allergey found

- Physical threoropist is trying gaze stabalization excersize, he suspect VOR, but no relief yet after 4-5 visits.

- opthamologist examined eye, have very minor catract which doesnt require any treatment. He suggested to check for ocular maythenetia.

Appointment is scheduled for ocular maythenetia in the month end.

I am also planning to visit orthopedics to check if I have cervical related problem as I have stiff neck.

I started doing cario excersice since 4 months and since last 3 moths I am also lifting heavy weights in gym.

So here is my story, I feel like disable everyday as I wakeup with headche, off balance, not able to concentrate on my work. Any real experience who got similar symptoms? Please help.

0 likes, 47 replies

47 Replies

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  • dizzyear
    dizzyear RD13

    Posted

    Hi RD13,

    Sorry to hear about all of your symptoms.  I cannot think of anything that would explain all of your symptoms.  However, Superior Canal Dehiscence would be a possible explanation for the long term imbalance dizziness, blurry vision due to Nystagmus, difficulty with concentrating.   If you happen to have this condition, it would not have been caught by the testing you have listed.  The symptoms you have listed seem to include more than just the inner ear.  It seems like a Neuro-Otologist or Neurologist would be the right Drs to be working with.  Since they cover more of the brain and interconnections to inner ear.  I happy to have Superior Canal Dehiscense, so if you look it up and feel there is a possible fit, we can discuss more.

    • RD13
      RD13 dizzyear

      Posted

      Thanks dizzyear for your reply.

      I searched for Superior Canal Dehiscence, all the symptoms doesn’t match to me specially auditory.

       I tried to map the symptoms, see below

       

      Autophony – person's own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear - I havent observed such a problem happening with me.

      Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal - Applicable

      Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia - Sometime when its loud like many person talking in room, I feel my ears are full and fog like feeling and dizzy.

      Pulse-synchronous oscillopsia

      Hyperacusis – the over-sensitivity to sound - May be true for me.

      Low-frequency conductive hearing loss - Not applicable

      A feeling of fullness in the affected ear - True for me

      Pulsatile tinnitus - My ears are always ringing like swooshing sound or as being like the chirrup of a cricket or grasshopper

      Brain fog - True for me

      Fatigue - True for me

      Headache/migraine - Episodes of headache, so true

      Tinnitus – high pitched ringing in the ear - My ears are always ringing like swooshing sound or as being like the chirrup of a cricket or grasshopper

      What do you think? What tests are required to confirm Superior Canal Dehiscence?

    • dizzyear
      dizzyear RD13

      Posted

      Hi RD13,

      The symptoms for Superior Canal Dehiscence (SCDS) can be quite different for each person.  Some people don't have the autophony and some people don't have the dizziness.  I had only the dizziness for the first 6 years and then started to get the autophony.  Since it is rare, it is unlikely you have this, but it has a couple of tests that can be used to exclude this.  

      Testing for SCDS 

      The main test for SCDS is a special high resolution CT scan of the ear canal/temporal bone area.  They then look at the scan to see if they can see a small hole (dehiscence).  The size of the hole can be very small (size of a pin head).  So they have to use a very high resolution setting on the CT scan in order to detect the hole (<=.6mm).  Some people shows symptoms with just a very thin layer of bone or crack in the bone that can be hard to see on the scan.  The second test is called a VEMP test.  This test is usually used to confirm SCDS or can be done to see if it is worth doing the CT scan.  The VEMP test uses electrodes on your face and neck and measures muscle response due to specific sounds they make in your ear.  The VEMP normally shows an abnormal response for people with SCDS.  

      In your case, I think it would make sense to at least try to rule this out give everything you are going through and the testing you have done so far.

    • RD13
      RD13 dizzyear

      Posted

      Thanks, i will ask doctor for these tests. Who is the right doctor, nuerologist or ENT?
    • dizzyear
      dizzyear RD13

      Posted

      Hi RD13,

      Normally this would be ordered by ENT, Otologist, or Neuro-Otologist.   From least to most training related to inner ear and interconnection to brain.  I think a good ENT should be able to order and review the tests.  However, many ENTs have never seen anyone with this condition, make sure to discuss the settings of the CT.  This requires a very specific setting or the image will not be good enough to detect the hole.   FYI, my test was ordered and reviewed by and ENT the same ENT that diagnosed by SCDS.  However, with your other symptoms, I think you should probably be working with an Otologist or Neuro-Otologist (more specialized)

    • RD13
      RD13 dizzyear

      Posted

      Thqnks dizzyear.

      Did you got diagnosed with SCDS? If yes then any treatment available? How are you doing with this now.

    • RD13
      RD13 dizzyear

      Posted

      Neurotology or Otolaryngology? Difficult to find these doc in NJ, I see 2-3 docs but now confused. Some says Neurotology while some are Otolaryngology.
    • Waffalobill
      Waffalobill RD13

      Posted

      I didn't see any neurotologist in my area . Lol . Closest was like 65 miles away. No way I can go all the way up north to a doc. Riding 10 minutes in a car is a nightmare.

    • dizzyear
      dizzyear RD13

      Posted

      Yes,  diagnosed with SCDS about 5 years ago by a good ENT Otolaryngologist. Yes, there is a treatment in the form of a surgery.  Since there is a hole in the bone the treatment is to fill or patch over the hole with a surgery.  However, this is a surgery inside the skull and is somewhat of a brain surgery.  Normally, this is reserved for more sever cases.  My symtpoms are stable and managable so far and I am trying to deal with the symtpoms instead of surgery at this point.

      Otolaryngology is the type of Dr you are looking for.  In this field an Otologist is an Otolaryngologist with a couple of extra years of training on inner ear disorders.  A Neuro-Otologist, has additional training on the inner ear connections to the brain.  Neurotology is mostly to do with the brain and is probably not the right area if you are looking to have the testing for SCDS.

    • RD13
      RD13 dizzyear

      Posted

      Got the appointment for neurotologist here in NJ, 25 miles away from my home, but need to wait till the 18th Oct sad. 

    • RD13
      RD13 rocksolid

      Posted

      No, not able to find it online. But 25 miles is not a big deal.
  • rocksolid
    rocksolid RD13

    Posted

    Been there done that, 6 yrs still spaced out but I think I have a handle on it. First I would say get a blood test and make sure your Magnesium, Iron, B12, and Vitamin D are all ok. I think my issue and maybe yours is a vestibular Migraine, look it up and see what it says. Also I think a big part of our issues are from the SCM muscle which is in your neck. Look up SCM muscle issues and you will ready more about it.
    • RD13
      RD13 rocksolid

      Posted

      Vitamin levels were bad 2 years back, B12-230, D-11, iron was good, not sure abt magnesium. Took supplement and B12 is high now 1155 so stopped it. D is 49.5 so its good. Iron is also normal. I will check on SCM, thanks.
    • RD13
      RD13 rocksolid

      Posted

      I suspect more of cervical/neck problem. Do you think SCM muscle issue can cause such a severe dizziness/balance issue?
    • rocksolid
      rocksolid RD13

      Posted

      The SCM can mess up a lot of things and most people don't think that an issue with their neck can be an issue with balance but it can. Look up SCM issues and you will see. Find your SCM muscle with your hand an give a little squeeze. I bet it hurts like a black and blue mark.

    • RD13
      RD13 rocksolid

      Posted

      I am messaging my SCM muscles and some neck excerises since yday and I am already feeling better. Didnt felt off balance too much today and finding easy to stand steady, still not 100% but lot better. Little headache is there but its manageble, what do you suggest next course of action for me?

       

    • rocksolid
      rocksolid RD13

      Posted

      I would say just keep doing what you are doing. Learn more about how to make your SCM feel better. Look up trigger points for the SCM and it will show you ways to work it out. Glad you are feeling better.
    • RD13
      RD13

      Posted

      Sounds good. I will check with my physio if he can work on my neck instead of eyes. Too early to conclude anything but I will keep it posted how I am progressing. I hope it will improve in cominng days.

      Do you think Cyropractor can help here? My insurance allows me Cyropractor visits.

    • rocksolid
      rocksolid RD13

      Posted

      Chiro could help maybe but don't do too much at one. I have bad posture my head is always forward which strains rhe neck and SCM so watch for that

    • RD13
      RD13 rocksolid

      Posted

      Day after feeling normal, i hit by pretty bad spell yday since morning, it was very much bad that i was even unsteady/rocking)dizzy while sitting on chair. Slowly improved over the night and today its got lot better but still its there. I dont know whats going on.
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