Vestibular Disorder?

[wabs09]

Posted Months ago with no responses, Can someone Please shed some light for me Please???
by wabs09, 1 hour ago
Hello all!! I hope someone can shed some light on my symptoms or at least has the same symptoms so that we can share our experiences and give each other some comfort! Anyway about 6 months ago, I had bent over to do some laundry and when I went to stand up I had an enormous rush in my head and I thought I was going to pass out, it felt like someone hit me in the head with a baseball bat but without the pain.. Well that feeling went away after a few seconds but was followed up by very unsteadiness, and a feeling in my head that I cant explain.  It wasnt dizziness and it wasnt lightheadedness.  It is something that is so hard to describe I cant even really begin except to say that its almost like my eyes and my brain were floating and my eyes wouldnt focus unless I was looking straight ahead.  I went to the ER and after all of the tests they came up with Vertigo.  After having read up on vertigo, Im not sure thats what I am experiencing.  It just doesnt sound like I have the real vertigo symptoms.   I had for the two weeks prior to the "big incident" been feeling the brain floating sensation and off balance, but I thought it was due to being tired because it was mostly happening after 4 in the afternoon.  However since the "big incident" I still have that brain floating sensation on occasion that lasts from an hour to all day.  I did notice that if I lie down for a bit it usually subsides but sometimes if I start moving around alot it comes back.  I went to an ENT and after a few tests he came up with 31% nerve damage in my right ear and it is causing my balance problems and told me to deal with it, it is going to be something I have for the rest of my life and I will have good days and bad days, and sent me on my way.  Back to the GP.  She then sent me to a neurologist.  Of course here comes the MRI and eeg's which both came back normal.  He said more than likely I had a virus that caused damage to the nerves in my inner ear or due to the fact I had been diagnosed with a B12 deficiency at a level of 277, either of which will eventually go away in time with treatment for the B12 deficiency and the virus subsiding.  Still no answers!!!  Just educated guesses.  Very disheartening.  The problem is is that my symptoms keep changing.  Some symptoms get better and then I get new ones, and these symptoms are so hard to explain.  With intensive research this is what Ive come up with.  These are not in any particular order of severity, generally I have these symptoms all the time.

general feeling of not feeling well, always feel like im getting sick
Loss of balance
Trouble Focusing, objects around me jump, float, bounce, blur
Loud noise makes me feel like im going to pass out
Busy environments make me dizzy and feel like im going to pass out
Sensitivity to light, glare and moving or flickering lights, especially fluorescent lights
hard to walk in the dark
poor depth perception
difficulty concentrating
frequent loss for words
forgetfulness
fatigue
anxiety and panic
lightheadedness
depression
moodiness
feel hung over every morning
tinnitus
sensitive to loud or sharp noises
ear pain
slurring words
brain flashes?? really hard to explain (like someone is turning off and on a light)
sensitivity to vibration
feeling a vibration in my eyes and forehead sometimes when I talk, like someone held a buzzer to my face briefly
Irregular heart rhythms
Brain fog
muscle weakness
sensitivity to a change of hot and cold temps and changes in the wind
shadows moving make me fel like im going to fall down
objects around me look like they are moving or I feel like im moving when not

Im sure this is not a complete list, but it is the best I can do right now. Please help me.  Im at a loss for anyone to turn to anymore, I just get the run around from everywhere I go.

[joe2310]

I have had some of those things brain float stuff,I  got vertigo bppv 10 years ago but learn to live with it BUT    recently i had a bad sinus infection witched turned into laberythisis  not  sure on spelling.

anyhow I woke after two hours of sleep and the room started spinning and i threw up, I ended up in the hospital . when the inner ear nerves get infected alot of things can happen.  they say my stuff will clear up iin a few weeks but ,its easy for the mind or brain to race  or panic,since my vertigo from ten years ago i have always felt like i am walking in the sand at the beach or like your ears are to pistons and they are not firing right,and remember the eyes and ears and balance stuff are all tied together,,

by the way I got a cat scan and mri and it ruled out stroke or tumors maybe look into that!



joe

[evo123]

I really feel for you and I totally understand how you feel.  I have seen various doctors that do not like the fact that I am trying to figure this out, with or without them.  I live in the UK and there are very very few doctors here who have any knowledge (esp. through experience) of POTS.  I have not been given any information or advice regarding this condition and have had to read about it on the internet to gain any insight.  I have found these boards very informative, helpful and comforting.  

You have to be your own advocate, the symptoms you are experiencing are real and can be diagnosed.  

Copy your post and put it in the Dysautonomia (autonomic dysfunction) forum, there are many great people there who will give you their advice and opinion, they will also help you with regards to doctors and tests you should ask for.  You should definately have a full hormone panel done.

You could also try and monitor your own heart rate and bp - to give yourself an idea of what it's doing.

Try taking your pulse after laying down for about 15mins.  Then stand upright and take it again several times over the next 15 mins or so - see if there is a large increase.   If it does increase over 30bpm or to 120 bpm then it may indicate POTS.  There are also several conditions that have similar symptoms, including adrenal issues

Keep a diary of your symptoms on a day to day basis, and take this with you when you do see a doctor.  Maybe noting if there are any triggers or things that make you feel better, etc.

Remember, you are not a hypochondriac and you will get to the bottom of this x

[wabs09]

I just want to start off by saying thank you very much for your support and your advice.

I have come to find out with these Dr. visits, that everyone wants to treat me as if I am a hypocondriac, which I am not.  I dont know how to go about, anymore, asking for these specific tests.  I feel as though I am making the Dr.'s angry which is going to make them hesitant to listen to me and my concerns.  I also feel that I nees to be my own Dr. and investigate on my own because I cant get them to do it or I am hesitant to ask for help for fear of the way they will treat me as a person.

To answer your question, I have not had any hormone tests done.  As I sort of mentioned before, I have just started going to a new cardiologist, one that specializes in heart rhythm, however I didnt mention all of my symptoms to him due to the fact I never thought that the neuro symptoms and cardiac symptoms could be related.  I have had heart paloitations since I was twelve and just started with the neurological symptoms recently so I never associated the two.  So I think that I will take my list in when I see him nxt month.

I just wish I knew how to get ahold of one of these docs that will do all of the testing without being prodded to do so.  I want one who will take the initiative to help me out for the sake of helping me out.

[evo123]

I had many many tests done for all kinds of conditions, I had many tests done to check my heart, they all come back normal.  It was only when a Tilt table test was done that they discovered the autonomic functions of my heart and bp did not respond appropriately.  POTS is diagnosed by an increase of heartrate by 30 bpm or to 120bpm, when going from a laying position to a standing position.  This condition can give you many symptoms, that differ on a daily basis, and can stay continously or come and go in episodes.  Symptoms can include many you have mentioned above and are caused by dysfunction of the autonomic nervous system.  Symptoms can also be relieved by laying down as you have mentioned yours do.

It would be worth looking into this if all the tests you have had done are normal.

There are also other conditions that can cause similar symptoms.  Have you had any hormone tests done?  

I am new to this so there may be others on here who can give you more specific information than I can, but it's something you can look at, if only to rule it out.



  

[wabs09]

No I havent.  I just saw a new cardiologist yesterday and he is now in the process of beginning the battery of tests on me that suit his fancy, so I guess well go from there.  I only really told him about my heart issues not the rest, but when I go back to see him, I a m going to take this symptom list with me and see if maybe some of my heart rhythm issues are now related to my neuro issues.

[evo123]

Have you had a Tilt Table Test?

[wabs09]

I have had numerous tests done on my heart and of course they all come back normal.

[AudioChick]

Have you had any tests done on your heart?

[evo123]

I am sorry you have been experiencing all these symptoms with no diagnosis.  I to have been in the same predicament but now I have a 'suspected' diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS).  

Read some of the posts on the Dysautonomia (autonomic dysfunction) forum.  See if any of them sound familiar.  Try posting your post there too.    

I hope you find some help on here.