Verapamil

Medication 💊 Calcium Channel Blockers
101

Hi Kira,

Sounds like you have been thru a very difficult time with this condition just like myself. Years back i also use to find an aile seat in the theatre and further up. But now…most of the time an aile seat is not as important, although i cannot sit too close to the screen because it will increase the dizzyness. Sounds like you are making progress slowly but surely…so your going in the right direction. Never give up! When i would leave a movie theatre for fear of Vertigo, the next weekend i would go back to the movies. I don’t want anything to rule me so bad that i am scared of it. What we have is definitely a hidden disability. I lost 2 very close friends years ago. As soon as my health began to falter…very gradually the phone calls became less and they did not want to do much with me. It really hurt…but you move on and make new friends. I use to talk about it alot…way too much but don’t do that anymore. My partner gets an ear full every now and then but i try to keep it to a minimum.

Joe

102

guys,

like we’ve said in the past, i don’t think this is just one “illness” with one “etiology.” It sure did seem to start with a virus, or at least worsened, i don’t know. It all came on so slowly in the beginning and there were so many other health problems looming at the same time - perimenopause was heck and I didn’t know what was going on. it was all the migraine aura that tipped me, and thankfully my doc, to MAV. I said for years that, even though this seemed to start or worsen with a virus, it felt like a migraine without the headache.

It’s been quite an experience, being sick. I had no idea, before, why people got so shameful and secretive when diagnosed with, say, cancer. Now I understand. There’s just something shameful about it, and worse, because this illness is so misunderstood. and misunderstood is a gross understatement. I think these symptoms are indescribable, incredibly so.

Yea, Joe, i used to give my husband a blow-by-blow of how horrendous my day had been. i quit. Firstly, he couldn’t really understand it and secondly, i think it put some distance between us. He’s healthy and leading a normal healthy life. He has a sick wife who was bedbound and now only housebound. The distance between us was palpable.

So I’ve tried real hard to unburden him and keep my mouth shut, try to act as normally as I can, but at the same time still let him know i am suffering terribly. It’s a balance. Since then, he has become less overwhelmed, less depressed, less angry with me (and this is part of the reason for the shame, is that people do not take it well - i would hate for the shoe to be on the other foot, because I would be frantic if he were this ill, but it astonishes me how angry he would get last summer, just because I was feeling worse). He’s a good man, really, but he’s also human, and he “lost his wife.”

well, i’ve lost the life i used to have - but i seem to be finding a new one. Afterall, we’re only here for a moment.

Love you guys,

Julie

103

Hi all-

Julie, your last post, I just had to respond to. It brought tears to my eyes.

I could relate to just about everything you said. (I’ve read your other posts, and it has jumped out at me before. ) I also, was “hit” after a terrible bronchial virus. At the time, I was diagnosed with “Viral Labrynthitis”. Looking back now, I had been suffering symptoms for years, but was only diagnosed with MAV because of the auras I started having. I too, was, and still am perimenopausal, but all of my troubles are migraine related. The symptoms (many) are just textbook. I just don’t have the “classic” headpain. (Thank God for that!!! :wink:

It IS almost a “shameful” thing we endure. People can’t “see” that we are sick. We don’t “look” sick, so how can it be??? I have family members (ones who suffer from painful migraines) that absolutely REFUSE to believe I have MAV. They just can’t understand it. They REFUSE to understand it. I got all choked up when you spoke of your husband and his anger. Bless both of your hearts. Remember though, anger is just fear. His anger was only his fear of having “lost” his wife to something he doesn’t understand. And, if I wasn’t living the Hell we live, I probably wouldn’t understand it either. (LOL !!)

It truly is a disgusting way to live. We all will make it. This board is a lifesaver to so many. It is so much comfort to know you are not alone!!!

Kim

104

The posts have been so “on target”.
Julie–my husband will be tolerant to a point, and then get angry. I also feel like there’s sort of a time/tolerance limit–as it drags on, his tolerance lessens. As mine would in the same situation.

I got kind of frustrated with my otologist when he told me to “accept my limitations”. It’s hard to know what they are, and harder to accept them. I spoke to a member of his department yesterday–they’re trying to raise money for a balance center, and I told her the most important thing he did was validate me.

My younger daughter has had severe MAV: she hospitalized with status migraine at 17, following the flu, and the prominent pediatric neurologist couldn’t understand that she had little pain, but unremitting vertigo–she discharged her, no better with a comment that she needed a psych consult. Ultimately we made our way to my otologist who just validated her: wrote up a beautiful consult sheet that said she has severe MAV. Before that, dragged her to the “best” pediatric neurologist at Children’s Hospital, Boston–who NEVER understood MAV–despite my sending her articles.

Julie, it is the life we have and Joe, good for you for going back to the movies. Kim: the ignorance around MAV is profound, and frustrating–how can someone deny your reality?

My daughter is in Germany for a week: I’m hysterical with anxiety–she called last night to say she was tired but having a good time. Life has to go on. I expressed concern about the trip, and she said " I can’t live my life governed by fear." Unfortunately, I still do, but I can learn a lesson from her, and all of you.
Kira

105

Julie,

As i have said before…i have been dealing with this condition for 20 years. Things have improved but at a very slow pace. I am far from back to normal but atleast i can do most things like a concert, movie or even travel from California to Kansas City. Have not traveled further than that in a number of years. I wish that i could work full-time and make the money i use to…but i just have to watch my pennies and cannot buy as many nice things or take trips like i use too.

Julie…i have not only MAV but another chronic illness that i have to contend with so it’s really tuff sometimes. Years ago when the condition first started i received some therapy counseling because it was really frightening to me…the vertigo, rocking, brain fog, etc. But you get to a point where you don’t fear it like you use to. For the most part you know what to expect. Also…watching your diet, getting 8 solid hours of sleep…less stress, etc helps alot.

You do what you have to do to move on and have a life even though it may not feel like a full life…we have a nasty illness but sometimes i have to remind myself it could always be so much worse because in reality there are worse illnesses out there. That doesn’t mean we don’t have a difficult illness…because it can be very bad at times.

Joe

106

Kira,
I’m so glad your daughter is having a good time. It always makes me sad when i hear of a young person with this ailment. She has a tough road ahead of her but it sounds like she’s got the right stuff. I don’t have kids, but I know I would be more than a little worried if i had a daughter in Germany even without MAV. I feel for ya. Hope she makes it hope safe - and soon. And Kira, after I posted last, it suddenly dawned on me - i’ve read your story before, but you’ve been suffering to some extent since 1975 !? God bless.

Kim,
As much as I hate to hear other stories as bad or worse than mine, i do find so much comfort in knowing i’m not alone. Thank you Adam!! And yea, when I’m feeling sorry for myself, i remind myself that at least i don’t have much pain - talk about over the edge! About my husband - you are absolutely right - last summer i was going downhill at such an incredible rate. I had a noticable acceleration in my dizziness by the week, to the point that I could barely get to the bathroom. We were starting to make plans to close my business and sell the house (like I would have been able to tolerate THAT!) It was a horrible time for us. I really thought I was dying and I think that, even though he would argue the point, i.e., “what are you dying of?,” i may have convinced him. He was frantic, not sleeping well, waking up with nightmares, so depressed he actually tried some lexapro. He’s 65 and before I got sick we talked about how we would like to spend his retirement years. I’m 54 and thought I would be caring for him as he aged. Those plans are sad memories now, but things are better! I am up and about around the house. I cook quite a bit, which i love to do, i take care of him and the house as much as I can. Gosh when I think about it now, it’s amazing how much improvement I’ve had since starting treatment. It’s a start, and hearing other stories helps keep me realistically hopeful.

and you know something else - things that i used to think were so important are not! Like having my hair cut every 3 weeks, dancing or exercising competitively, jealousies, my husband leaving things out. A friend of mine was talking recently about how she hates the shape of her nose. I thought, gosh, i remember when I used to hate the shape of my nose -as if that mattered at all. The things I used to waste energy on - and I mean wasted.

I guess, since I actually did think I was dying, because “nobody could be this dizzy and still exist,” I also spent time thinking about my life. I was flooded with regrets and realized what really mattered to me. We are here for a very short time, whether it’s 25 years (like my sister) or 91 years (like my father) - it’s still short. As I improve, i find myself being more genuine and open with people, letting them know who I am, letting them know how I feel about them. I almost feel like i’ve been given a second chance, limited though it may be, and i am going to savor what I can.

I had a dream the other night - a voice said to me “Hang in there!”

Julie