Thank you for responding. I will answer your questions.
migraines always involved? No. 25% of the time I get a rainbow migraine that comes right after the ear makes the loud noise. The rainbow migraine takes away part of my vision. It does not hurt. Wherever I am, I have to stop and do nothing til it is over. 25% of the time I get a headache (wouldn’t call it a migraine but enough to take tylenol) and it happens when the dizziness ends. 50% of the time I get no migraine or headache.

The allergist took the full battery of tests and found I was alergic to NOTHING. He then gave me a “poison” that everyone reacts to and I did not react. Then he gave me a blood test to confirm his suspicision that it is impossible to know what I am allergic to and that I am immune suppressed and don’t make antibodies in response to any attack. That is why I have to take infusions every 7 days. The ENT wouldn’t guess what allergy it could be, just thinks that it could be an allergy.
What am I doing when I get the warning. Obviously, the warning happens when I am awake. Could be driving in the car (in which case I go right home). Could be I am in my room walking around. Could be I am reading or doing housework. I have had a long time to journal the triggers and have found nothing in common. Not computer or lights or time of day or weather. This year it has been happening every 3-4 weeks. I am 75 so it is not hormonal. A few times I will awake in the middle of the night with the vertigo and have missed the warning.
At the moment of the warning, I get things ready by my bed: water, crackers, applesauce. I am never sure how long it will last but I always want to have something there. I take Dramamine and Sudafed as well as Zyrtec and have Benadryl ready. I do believe all of this helps to make it only last 12 hours. Two years ago, the spell would be so bad I could not even drink water and could not walk. Now, I can find my way to the bathroom and can sip water and I don’t vomit. I do think the pills help. If I had a valium, I would take that as a few years ago, that was tried and it really helped. At this time, doctors are not prescribing that kind of medication.
Vertigo. It used to be so bad. I was put in the hospital one time because I could not do anything. Also was in the ER one time and they gave me zofran and valium heavy doses to help but not relieve but was enough to get me to move. The spinning can be horrendous. Then again, it can be just movement instead of spinning. Things move to the left and I blink and they start over from their original position and move to the left again and this goes on for hours. Sometimes it can be up and down. Sometimes forward and backward. I am in the twilight zone.
Once the attack starts, I am immobile for the 12 hours in a chair. I keep my eyes closed. When I open, I spin. When I move, I spin. I do not lay down. I have a lung condition so I am always in a chair at night and that is the best position to be in for the attack.
You mention my neck. No doctor has asked me about that. BUT yes, my neck tightens up greatly when the attack begins. My shoulders rise up. I think that is in response to what is happening to me. I try to relax but it is nearly impossible to do so.
No fluid ever comes out of the left ear. I do the saline rinses daily. But I can always hear the water if I plug my nose. The ENT says it probably is water in my inner ear. Hearing test done several times and I don’t hear high pitches but it is common for my age and it is that way in both ears.

The ear does not hurt at all. It has a very loud noise always the same note.
I was in an accident 20 years ago (brain injury, hit my eyes and frontal lobe and then the back of head) and was in a coma and damaged C4-C6, bulging disk, needed plate put in but didn’t get it because I can’t have surgery with my failed immune system. Also my cranium came off of C1 slightly and they put it back on with guided xrays. I always have upper back pain but deal with it.
Why in infectious disease area on this site? That was a mistake. I was researching my immune system problem and didn’t know I posted it there.
One more thing, when the dizziness/vertigo is in progress, my eyelids (both) are tender to even the slightest touch.
I envy that they give you valium. That is what I got in the ER and it was a life-saver. But doctors won’t give me any. I already take doxypin and klonopin each night for sleep. Neither is the cause of the problem because I just started the doxypin. Since my brain injury 20 years ago, I have little ability to fall asleep. I can go many days with no sleep but I feel crazy about day 2 ½. So they have given me many sleeping pills over the last 20 years and have to change them. the current one is Doxypin 10 (everyother night it is dayvigo 10) + magnesium + klonopin 1 + melatonin. Still difficult to sleep and it doesn’t stop my vertigo.
I was away from home a year ago when I got an attack and I wanted to die. I didn’t have my pills. That one lasted 2 days. I forced myself to sip water and I couldn’t even to to the restroom.
Has the doctor ever told you that you could loose your driver’s license? Since I have plenty of warning, I don’t think that is fair. Is there a way to discuss off line?