Scared

[kc2015]

Hi all, I wrote a little over a month ago about chronic dizziness I have been experiencing. Namely since I returned from honeymoon I have felt like I'm constantly in motion. Walking  like being on a trampoline and only rest from the swaying sensation is when  lie down. It's been 3 months and my life has been turned totally upside down. Once Easy tasks are now seemingly impossible. My coordination is completely off and I am suffering from anxiety. I saw a neurologist who ordered valium and mri. I postponed mri to see if it would improve on its own but it hasn't and my brain mri is scheduled for tomorrow. Of note I lost significant bilateral hearing starting 5-6 yrs ago probably from autoimmune ear disease.but I never had balance issues till 3 months ago. Googling is the worst because im,looking at either chronic vestibular disease, brain tumor, or ms. Any encouragement would be much appreciated. 

[Joe S.]

Try to control your anxiety. Get the results from your MRI and determine what your course of action is. There should be a solution to restore your balance and your life.

Others have recovered from these issues and I believe you will too.

[cccourt1942]

I have zero idea the severity of your yet to be diagnosed condition.  I will say this, one of my undergrad degrees was Audiology.  I am OLD.  My texts did not include autoimmune hearing disorders.  Back then EVERYTHING linked to vestibular was under Meniere's.  I am saying this as this can be googled.  It is virtually the same in symptoms...but with the autoimmune, I understand the dizziness, unstable gait, etc can be medicated.  I do not KNOW that but have seen it discussed here.  No reason not to believe numerous first hand accounts.  So, as Joe says, stay calm, if necessary, stay in close quarters (your home), always be close to furniture or walls to lean on or grab hold of.  Don't walk too fast when you feel great...be wary. 

I believe your physician team will find treatment for you...to control whatever is going on.  It's good to live in the 21st century.  Really.  It is. 

Best to you,
Courtenay

[SunshineDaydream]

Hi kc. Sorry to hear you aren't feeling well. It's easy for the mind to jump to the worst case scenario when you don't have answers and do your own research online. Never a good feeling, so try not to think of the worst as is really won't be beneficial for you, and follow up with your doctor regarding test results after a reasonable amount of time.

I read your post history regarding hearing loss, headaches, fatigue and leg pain. Have your doctors considered or ruled out Meniere's disease?

ETA: Looks like C3 and I were thinking and posting about the same thing at about the same time. 

[irish]

Have you had blood work for antibodies that destroy the hearing? I have had this done and of the 3 blood tests done I had positive antibodies for 2 of them. The only treatment at present for autoimmune hearing loss that is diagnosed is IV Solumedrol 1000 mgm monthly for up to 20 months, I believe. I did the steroids IV for 5 months and did not do anymore as I was feeling a little reved up. I tend to get hyper on steroids and did not want to get into a psychiatric problem.

I am totally deaf in right ear and was starting to los hearing in left ear. So far the left ear loss has leveled off so that it good. I have dizziness and balance issues also. I had surgery years ago that destroyed my balance in one ear. I went to vestibular rehab and that really helped me with my balance issues. An assessment with vestibular rehab relating to your diagnosis might be worth considering.....talking with doctor about. You would be amazed how a person can retrain or strengthen what we have left.

If you haven't had ENT testing for hearing and balance issues it would be wise to do so. I have nystagmus a lot so my central nervous system is not the way it should be nor will it ever be that way. Knowing how to deal with balance issues, walk, what to watch for , etc really helps also.

Be aware that some of this could be a proprioceptive disorder which is very common in autoimmune disease. Ones body has problems knowing where we are in relation to the world around us. Darkness really makes all these things worse. Good luck. Irish

[katie1111]

Years ago I had trouble with frequent dizziness, though not constant.  I was treated by a "neuroaautolyngologist" which is basically a ear doctor who has had additional training in the neuro causes of ear diseases.  I am not sure what the final diagnosis was, but after a whole series of tests he came in the room and said "you are a mess." There is one condition, benign proximal positional vertigo (BPPV)  which is caused by dry tissue flaking off in the labyrinth of your inner ear.   The doctor treats it by rotating your head in a series of various directions.  This sounds weird but it helped.  I had more than that going on.

I was also treated by an assortment of drugs - Phenergan, Topomax are the first two that come to mind.  Each one worked, but after a year I had to stop due to side effects.  I would be alright for awhile and then the symptoms would reappear and he would try something stronger.  I was getting discouraged and made a sarcastic remark to the pharmacist - something to the effect of I was going to end up going through every drug he had.  The pharmacist suggested a try the motion sickness preventative drug Bonine.  It has worked like a miracle.  I carry around with me and have found that it works best if I take it at the first sign of the dizziness.  Now I only take it a couple of times a year.  Generally one pill works, but occasionally I have had to take a second.

Good luck and don't give up.

Katie 1111

[warmwaters]

Hang in there.  The loss of ordinary functions, like walking and bending over, feel terrible. Press to get answers.

In addition, just make sure that you're having enough water to be well hydrated. Some people are sensitive to dehydration, and it can contribute to dizziness.  Small, harmless thing to try.

And if you've got people with you, as for help. It's ok. And it's safer.