That horrible floating feeling

Yusi.  Please don't lose hope.  This started for me 3 years ago.  I was getting severe pain in my left ear and the ringing started.  I then developed a whooshing sound in my ears followed by what seemed like a low bass throbbing.  THAT happened for the first time in a meeting.  I was very distracted and wondering if anyone else heard the same noises.  I was so distracted that I didn't realize everyone was staring at me waiting for my response to a question.  Kinda funny now but at the time, not so much.  About 2 weeks later, the vertigo started. I thought I hadn't eaten or drank enough that day.  Went to the hospital and they said I just had a sinus cold and told me to take cold medicine.  I kept getting this for 2 weeks and would end up in the hospital every day scared to death that I was dying.  Finally a Physicians assistant told me i just had allergies and told me to get rid of all my pets.  Please insert some rather unkind words here.  Finally, because I kept going to the same place, they got tired of me and referred me to an ENT. He told me I likely had Meniere's disease.  He ordered a CT scan to rule out brain tumor.  THAT scared the crap out of me.  After a month i got the results back from the scan, and no brain tumor.  HUGE relief.  THAT turned out to be my worst fear.  I've lost 4 members of my family to cancer; three in that same year.  Being told I didn't have a tumor was the best news possible.  That being said, I was still having vertigo, still having panic attacks when the floaty feeling would start and afraid of becoming a burden to my family.  I was afraid to tell people I worked with.  BIG mistake for me.  I was accused of drinking on the job and of being rude and indifferent to the people who worked for me. (Couldn't hear them and was running to my office to the garbage can to throw up)  I looked angry all the time because I was trying to focus on walking a straight line.  I finally told a few people and they were decent.  They didn't understand but were decent with me.  So I finally get a firm diagnosis of Meniere's and my work transfers me halfway across the country and away from my family and support network.  My spouse and children would be joining me a year later.  I am now alone, halfway across the country away from my family and what I can tell you is that 6 months since I moved, I'm ok.  My husband and kids will be joining me 6 months from now.                                                                                   I'm still scared but here's what I've learned in that 6 months.  When I got to my new job, I told my new bosses EVERYTHING.  I am EXTREMELY fortunate in that I truly have the best bosses ever.  I found that I sucked at explaining Menieres so I now carry a printout of the symptoms and what Menieres means.  Most people believe what they read but not what they hear.  When people have questions, I answer them as honestly as I can and I try to figure out a way to explain that they will understand.  That being said, I still feel like I'm losing my mind sometimes.  I have varying degrees of what kind of day I'm having.  If it's a bad day, I stay home, eat something substantial, take a pill (can't remember the name but I believe it's the bentahistamine?).  If it's a yucky day, I'm a little tired or off and sometimes have a little bit of dizziness.  Today started out as a yucky day.  I thought I could tough it out and shake it off however, when I got to work and had to walk across the BIG parking lot, I got a really bad floaty feeling.  My boss let me stay for the meeting and then told me to go home and if I wasn't feeling better tomorrow to stay at home and take care of myself.  That was a huge relief.  When I got to my apartment, I texted my husband and told him how it felt.  I explained that as I was walking across the parking lot (big, open spaces are REALLY bad for me) I felt like my inner self was too small for my outer shell and that I felt like I was rattling around in my body floating around or like a rock in a can.  I've NEVER felt that before,  The panic set in, the fear of dying, the holy crap I'm alone and I don't know what to do.  THEN I googled it and it brought me to Brookiana's post.  I cried reading it and felt much better.  PLEASE continue to push the medical professionals to do testing on you and to try to find some vestibular rehab/therapy if you can.  Read online forums.  Keep a description of Meniere's with you for when you can't explain it.  I would get so stressed I would lose the ability to form complete sentences.  I've learned in the last 6 months to REALLY pay attention to the little warning signs my body gives me and I'm less afraid.  Today, I got a lesson on pride and ego.  I thought I was in control.  Today was not the day to think that.  I haven't resigned myself to this damned disease, but I won't let it beat me either.  I like to think of it as making my peace with it.  I, like someone else on this thread, try to maintain a sense of humour about the disease. I sometimes turn too quickly and get a bit dizzy and stumble a little.  I now throw up my hands and yell Stuck the landing.  My boss just shakes his head.  Sometimes my husband and kids will rate my performance like in gymnastics.  Sometimes when I stumble, I will grab my husband or co-workers and pretend we're dancing.  It still sucks and I have crappy days, yucky days and sometimes BAD days.  BUT!!!  My biggest fear was a brain tumor and I don't have that.  I am learning that for all the people that don't/didn't believe me, there are some that do and they are amazing people.  I have learned what I am capable of and what my limitations are and I'm learning to cut myself some slack.  There's the pride and ego thing for me again.  I've never said I can't do something in my life (almost 50 years).  WHAT a hard thing to admit.  For you, please,please keep going to the docs, keep writing on these posts and reaching out.  Summer for me is the worst but every time the barometric pressure changes I have crappy days.  The ENT told me this shouldn't affect me but it does.  Please start keeping a journal of when it's REALLY bad, moderately bad or if there is a little relief from the symptoms.  After the "gentleman" (I'm really struggling to not call that Physician's Assistant bad names) told me I just had allergies and to get rid of my pets and take Reactine, I got mad and made it my mission to find out what the heck was wrong with me so I could go back to him and tell him he was wrong.  I will say that my husband helped me to be the bigger person and I didn't go back and tell that PA that he sucked.  Thank you, hubby.  Please try the journal,  It helped me to feel stronger and less powerless.  Your post broke my heart a little but please know that you were heard.

so glad you have another ent appointment. I wondered if it’s because you are female that you were dismissed with stress. Betahistine has been a lifesaver for me. In the beginning when my unhelpful ent guy diagnosed me he said to take it when I have an attack which is totally incorrect. Having read the posts on this site by people who have had Meniere’s for years and now my own experience it must be taken regularly. Since I started doing that I have been very stable. So stable that I thought I was in remission and stopped taking it. Big mistake. I had a horrendous weekend of spinning and vomiting in spite of starting taking it again a week ago. The attacks were preceded by distorted hearing and tinnitus. Today though I’m back to normal as the betahistine is back in my system. It can take up to a month to be fully effective. I take 16mg x 3 per day. If I become unstable again I will make an appointment with a neurologist-otologist privately as there seems no point in going back to that ent guy I saw. Good luck. You will soon be feeling back to normal. 

I’m so happy for you!!!

J-

you said it keep looking for the right doctor I'm going on 3 years after the surgery and I feel a lot better lost my hearing in my ear due to this disease but making through going back to getting the right doctor my ENT told me and I believe him every attack you have it causes damage to your ear drum that's why its wise to be aggressive with this glad your doing better