Hi all. My adventure with Meniere’s started this January, in the middle of nowhere on a long drive home after visiting family out of state. We were in the mountains of West Virginia and stopped for lunch. I got instantly and violently ill a few minutes after getting back on the road and had to stop again for over an hour. I passed it off as food poisoning or just carsickness from all the mountain driving. A few weeks later we were out to dinner at a Chinese place, and an identical attack took place. After then, the vertigo began to creep into everyday life. Being a passenger in a car was becoming impossible. In March I had the worst attack while getting my hair done. Suddenly I felt like all the voices in the room were far away. I was very dizzy and my stylist had me lay back on a shampoo chair so she could finish. I went home and thought it would stop, but then a violent wave of nausea hit and I was vomiting uncontrollably. This attack sent me to the hospital, where they gave me meclizine and Ativan. I finally saw the ENT this week and they told me it’s Ménière’s. I was not, however, surprised by this news because a good friend also has it and had been counseling me and encouraging me to see the ear specialist. They put me on the triamterene/HC...whatever it’s called diuretic and I’m not having a good time with it yet. My blood pressure naturally runs low and the first dose made me almost pass out. I called the ENT the next day and they said “Well just stop taking it then!” Really rude, I thought, and even though I literally just saw this doctor he’s fired as far as I’m concerned. I called my primary doctor and he gave me the green light to split the dose in half. I still have pressure and fullness in my right ear, which is made worse today by the rain. I’m doing as much as I can to prevent severe attacks. I cut out caffeine completely about a month ago, and I’m on a low sodium diet. Just those two things have helped me a lot. Sometimes it’s hard to tell if it’s the Meniere’s acting up, or my anxiety, or both. I have not done any long distance travel since the presenting attack in January, but I have several trips planned this summer. I don’t want this disease to ruin traveling, but I’m half expecting I’ll get sick. If you made it this far thanks for reading.
Welcome, Karen. Meniere's doesn't have to stop your traveling. You learn to keep your rescue medications with you at all times (Valium/diazepam or Ativan/lorazepam for spinning vertigo and Zofran for nausea/vomiting). You may find that the patterns in the airport carpeting are a trigger; just request a wheelchair from the airline a few days before you travel, and they will be accommodating. The visual stimulation of crowds and movement can be a trigger, and with a wheelchair you can close your eyes on the way to the gate. With Menieres, it seems to work best to accept that it has invited itself into your life, so you make a little space to accommodate it and get comfortable around it. You're right that the anxiety can make a circular reaction where stress triggers vertigo, and vertigo triggers more stress, and so on. Mindfulness exercises with breathing and bringing your thinking into the present moment can help -- there may be community ed classes that can help with the techniques if you're not familiar. If you haven't already found Dr. Hain's website, check it out. https://www.dizziness-and-balance.com/disorders/menieres/menieres.html There are a variety of diuretics that have different side effects. I had to switch to find one that was tolerable for me. Hopefully your ENT is a neurotologist, since they are the ones who work across the ear-brain spectrum, which is where Meniere's hangs out. As you have questions, post them, or check the archives for helpful information. Knowledge is a good antidote to fear. Good luck, Karen.
Karen, Clare has given you some very good advice. Have you thought about avoiding MSG? Your mention of Chinese food made me think of that. That used to be the only trigger that I could say for sure besides stress that caused a vertigo attack. I’ve had Menieres since 1997. Diuretics didn’t help me and I have normally low BP so I didn’t stay on them long. I travelled all over the world. I was lucky as I had a very supportive husband who’s attitude was you can spin at home or you can spin in Paris, but when it’s over we can go see some marvellous places. Interestingly, I had my most reprieves from Menieres when we travelled. I’m guessing lack of stress played its part. When my attacks were still happening randomly I found that .5 mg of Ativan under the tongue stopped the attack within 30 minutes or less. Knowing I could do that went a long way to stop the anxiety and worrying if an attack was going to hit in public. Take Clare’s great advice about fighting the anxiety, get a hold of some Ativan (not for regular use, just onset of vertigo) and go on those trips! Wishing you best of luck.
I’ve definitely been more careful about eating Chinese food, and I’ve found that if I know I’m going to eat it I’ll deliberately keep the rest of the day’s food salt-free or almost salt free. We love to eat out, and it’s been a big learning curve how to do that safely. Looking back, I’ve had the nausea and vomiting symptoms for many years before the vertigo, and most of those episodes happened after eating a big restaurant meal. Ativan is okay in an emergency and it’s helpful to know I have it, but the side effects are awful and I seem to end up more panicked when it wears off, so I’ve been managing the anxiety with some natural supplements and just being mindful. Crowds are really difficult, but only in certain situations. I’m going to a musical with my Mom tonight, so I’m already mentally preparing myself for that experience and I’ll be extra cautious about food today. I am a musician myself, which has made it even more imperative that I learn to live with this. I am not having major hearing loss at this point and I hope I never get there, but the vertigo alone makes work challenging sometimes. Its still hard for me to explain to people, especially my students and colleagues, what’s going on when I’m having a bad day, but for my own safety I know I have to. I guess one question is have is how to not get down or feel bitter about the limitations Meniere’s seems to enforce. How not to get pulled into depression on the bad days, you know? I do my best to continue on with my life as normal, after all I have my husband, our three children, my students, my work, a whole life out there. I feel so defeated on bad days, like I’ll never have my normal life back again.
Karen your posts were really sad and anger inducing. What a freaking creepy disease. I feel for everything you said. Luckily I've never had my attacks in public like you. And I don't have 3 kids. And students. Just, wow. Godspeed lady.
Karen, I am on Triamterene HC as well and I don't care for the BP part of it, I've always had good BP and this stuff makes it run low. I hate taking any drugs for extended periods anyway, but I have stayed with this, although I can't say with any certainty that its helped. I understand your concerns about living life, I have had to make certain changes to accommodate this horrible disease and many of them revolve around my daily "normal" life (like riding my motorcycle, or going out to dinner and drinks, going to work, etc.) many times when i'm preparing to go out, I'll take my valium before going as a precaution (my doctor has prescribed low dose valium 2mg, for my vertigo) I find this helps tremendously both in case I do have an attack and on the psychological side as well. My wife is very understanding and knows if we are out some place and I say that I have to leave, that means we have to leave ASAP. Finally, if I'm not feeling well or, feeling like the possibility of an attack is high, I simply don't go anywhere. This has left my wife to go it alone on some occasions, but again, she is very understanding. Just recently, we were at one of my grandsons baseball games and I had an attack. We just got up, collected our things and quietly left the park, me on wobbly legs with my wife walking behind me holding on to the waist of my pants like I was an ornery child or something. Aside from fighting the vertigo and the urge to throw up every time I moved my head, I found the whole image we must have presented to the people watching us leave to be amusing. Anyways, stay strong and stay hopeful, there are medications and treatments that have worked for many (JOH, AVs, etc) and there is always more permanent solutions like surgery, etc. sometimes at the complete loss of your hearing in the affected ear, but still much more appealing than a life of spinning madness. I still manage to do all the things I did before MM, I just don't do them as much, and I have to plan things a little bit more than I did before. I know sometimes it feels like everything is over, believe me I've been there, but like any other disabling illness, you can overcome it with determination, planning and treatment. Good luck to you, I hope you find your way through.
i was diagnosed about 14 months ago and rarely get vertigo with vomiting since starting on antiviral med. and low sodium diet. it took me months to adjust mentally as well as physically. i'm thankful for a very supportive husband.