A little background... my husband David has been having attacks of vertigo every 2-3 days since March 9th. 15 attacks so far. My last post was 'At the End of Our Rope'. Yesterday was day 3 since his last attack and like clockwork at 8:00pm it hit. His cycle is increasing aural fullness, roaring/rushing noise, then he notices that things appear to have moved and he stands up. If his balance is bad, he knows he is having an attack. After an attack his ears are clear and the roaring/rushing is gone, but his balance is bad. We were lucky this time. I had talked with the doctor and pharmacist and they told me that dissolving the valium in his mouth wasn't decreasing the amount of time it took to become effective. I broke up 15mg of valium (I wasn't fooling around this time, his last attack was bad) in small pieces and told him to swallow them, then had him lay down and he put a dissolving Zofran (anti-nausea) under his tongue. I grabbed a bucket, etc., just in case. We sat quietly. I didn't tell him that the pharmacist said that it takes 30 minutes for the Valium to work. After about 15 minutes, he started to feel relaxed, and by 30 minutes he was REALLY relaxed. At about 40 minutes he went to sleep. He woke up at midnight and said 'Have you been sitting there the whole time?' He was able to walk to the bathroom and get into bed which was great. Didn't have to sleep on the couch again. Makes me wonder if maybe this attack wasn't as severe. His attacks really zap me. I was awake until 2:00 am. So what does this have to do with the Boston Marathon??? He has an appointment at Massachusetts Eye and Ear in Boston on Tuesday. The day after the Boston Marathon. Since he has attacks every 2-3 days we are in a quandary because Monday at 8:00 PM would be 3 days. We are a 2.5 hour drive from Boston. We decided to go to Boston tomorrow and stay in a hotel for two nights. Not happening. No hotel rooms, AND the closer the hotels get to selling out, the more they charge. I got a room at the Wyndham Beacon Hill for Monday Night for $511!!!! His appointment isn't until 2:00 PM on Tuesday. I would wait and drive down on Tuesday, but he has gone as long as 5 days and as little as 1 day 17 hours between attacks, and we have waited a month for this appointment. He is not going to miss it. He asked what would happen if he was unable to make the appointment and they said the next available appointment was at the end of May. I have until 6:00 PM tomorrow to cancel the hotel. I will monitor his symptoms, but I think he is determined to go on Monday. Sometimes you just can't win...
I have nothng major to offer except you should be optimistic, because you are going to a great place and are at the beginning. So you are far being out of options. Good luck. Dizziness and vertigo are awful.
Central Please make the appt. even if he has to be transported into the hospital in a wheelchair. The best thing for a doctor like Rauch is to see a patient in the middle In the middle of an attack or soon following one because 1. It is easy to see and test eye movements that will distinguish mm from MAV (mm tend to move side to side/MAV I have been old tend to move up and down during an attack and after for some time) 2. If needed Dr. Rauch will give him an IV Valium and zofran and he will come out of the attack within minutes. 3. They love to see patients during attacks or several days after. They will be able to make a more certain diagnosis /the evidence will be in the eyes/ pupils and the battery of tests they run on them to prove central (MAV ) vertigo or vestibular weakness. If you have to, request help from staff at the valet /entrance and they will come get your husband, he will not be left in the waiting room, they will take him in immediately and Dr. Rauch will be on top of it. Even if he is barfing in a bag in the car, please go!!!! Who knows Rauch may give him a steroid injection right there in his ear to calm his symptoms and give him relief until you see him again. He is a top dr.'s In the world at maybe the best Neurotology hospital in the world ight alon with John Hopkins ---and he is very honest/ no nonsense/ serious kind of guy. He has seen and treats the worst of the worst cases of mm from all over the world. He gets what this shit does to people. Good luck You guys are gonna make it.
Keep the appointment. Have barf bags handy if need be. I have been driven home during full cyclone vertigo and what I learned was to figure out a way to block peripheral vision and focus straight ahead. Then, in all honesty, it doesn't matter if I am lying in bed at home or somewhere else - the attack is going to be whatever it will be; and I will puke if I am going to puke. Location doesn't lessen the attack or the feeling of - but knowing that you are going "towards" a potential solution will be enough to get your husband through. I know that it is easier said than done - but I can share from experience that stress is a huge trigger. If you and your husband are stressing as you get to the "third" day, or because his ear pressure increases, it is almost certain that an attack will follow. Also, it is clear that your husband's attacks are very different than mine. When my attack hits the room is spinning so violently that there is not any question about balance or not. I can have the increased ear pressure and ringing but not have vertigo - but there is no question when the attack occurs because the room is spinning so violently.
I agree with BD and nicmger. Keeping this appointment will potentially set David on a course of getting relief from his suffering with this horrible disease. I hope the trip goes smoothly and looking forward to an update after you are both back home.
Thanks for your support and the details on Dr. Rauch. He will make the appointment, one way or the other! David is stressed out most of the time but particularly when his ear is really full. We talk about it and he gives a 1-10 assessment of the 'fullness'. '7' seems to be the indicator of vertigo to come within 12 hours. I'm not going to ask him to rate the fullness or roaring/rushing anymore. He does a pretty good job of distracting himself, but gloom and doom are written all over his face most of the time. I'll let you all know how we do. Cheryl
Early on, not long after I was diagnosed - the ear pressure was constant and pretty unbearable. the ringing was constant - there were times it woke me up when it increased and sounded like a fire alarm. I was always tired. It was so very hard just to get through the day. My vertigo attacks were much more frequent than they are now - but the "worst" was that question in my mind always wondering if today was the day I would suddenly have the room start spinning for hours. If the pressure was "greater" and the ringing "higher/louder" than it was in place for me to go dizzy. But I never knew - I could have all of that and not go dizzy too. Very hard to deal with day in day out. My mom would ask me if I had an attack that day, and if I didn't - she would say "it's a good day then". Initially I would argue - how could it be good? Did she not hear that I said the pressure was huge, ringing so loud i could not hear anything else? But slowly but surely that went into my mind. Aside from everything else, if I didn't have a full vertigo attack - I said thanks and appreciated a good day. If i had an attack but it was shorter, I said thanks. That was key in my finally learning how to deal with this thing. I had to stop focusing on the days "before Meniere's" and how that felt, I had to appreciate my good days and also appreciate and recognize that even on a bad day, there are so many that have it worse. It is not an easy thing to do. Gosh knows I struggled with it. But appreciating the better moments and what I have, really made a huge difference.
Nicmgr, you are so right, and it is very hard to do. I realize that my need to constantly log David's symptoms although helpful to me in seeing a pattern was creating an anxious, negatively anticipatory outlook in both of us. I decided to chill (at least outwardly). Tomorrow we leave and will spend Monday night in Newburyport, MA (about an hour from Boston). We live on an island in Maine, and the 15 minute ferry ride was my biggest concern, so we will get that behind us tomorrow. Regardless of what happens, I can get David to Dr. Rauch once we are on the mainland. I'll keep you posted! Cheryl
Rest assured that I know too well, first hand, just how hard it is. And so very hard for the person experiencing it to get to a "place" where feeling horrible ear pressure and screaming ear is considered a "good day". LOL But if there are any positives that I have learned from this darn thing: 1) As much as I try, I don't and cant control everything (this was a hard one for me); 2) Asking for help does not make you weak (another hard one for a very independent person!) and 3) Embrace and appreciate the little things (like the day I don't go dizzy; or if I do but it is "only" for an hour....I don't pray at night for a good ear day tomorrow, but I pray each night saying thanks for whatever good things happened during the day.) For your husband, perhaps meclizine before the ferry ride could help. But I can say that for me, I can't ever "duplicate" what makes me go dizzy. I have been on a boat, plane, car and not have issues; and sometimes I do. Honestly the worst for me was the period last year that I was dizzy 24/7 (not spinning vertigo, just dizzy and off balance) and was riding in a golf cart. MISTAKE! Horrible. Never experienced anything like it before, not since, and hope never again! I truly almost lost my stomach - and by the way, it was a short 3 min ride. UGH. Good luck to you and your husband!