I have a question for you guys. I have had a diagnosis of MAV for about 4 years now. I am a lot better than I was originally but my confidence level hasn’t been the same since having this disorder. I am a stay at home mom and the thought of going back to work kind of freaks me out. Thank God I have a few years before I have to worry about it. Anyways… when this started I would get these frequent “spells” lasting seconds that were scary as hell on top of all my other annoying symptoms. I get them still, but not as frequently. Well, I am having a flareup and the spells are back. Is this MAV or an ear prob or blood pressure drop? I will get this weird feeling in my head. It feels almost like a pressure change. At the same time I feel like I am dropping ( I don’t fall or anything). It feels like a pressure change inside my head makes me feel as if gravity is pulling my head with a strong force. I definitely feel like my environment is going down. So very hard to describe. I freak out a bit then it stops. I was kinda stressed when it happened. I was cooking dinner and helping my two kids with their homework at the same time. I have been really bad about my diet lately. I swear bananas are a trigger, maybe sugar. I can’t pinpoint my triggers really anymore. I know we are supposed to be at 57 degrees today, yes in the middle of January in Illinois, very strange weather we have had and no snow as of yet. Weather maybe? My husband is not really understanding and is sick of this whole ongoing mav thing. He wants me to call my dr. (Hain) but I am already on Verapamil, supplements, Diazepam, and Welbutrin. Don’t want to change anything just yet. This should pass. I am at about 90% some days, I get about one or two 100% days here and there. But usually i expereince some dizziness everyday. But i want to be 100% dizzy free, no vertigo for many days in a row!
I have been kind of down lately. I get so jealous of others who are living their lives mav free. I want to be them. I miss my freedom. I pretty much do everything within reason but I hestitate going to lunch with friends, etc. though I do it on occasion. I feel better if my husband is with me. I go shopping alone, volunteer at school,take my daughters out to lunch alone. But I prefer to do takeout. Its weird how I limit myself. It is better than being house bound like I was at the beginning but I am sick of being limited. Mav is always in the back of my mind. UGH
You sound kinda like me. I have this nagging feeling always in the back of my head constantly reminding me “don’t let your guard down! You could get dizzy!”. My great moments are not to their fullest because of it!
I get weird spells too. Sometimes i think it’s anxiety, sometimes blood pressure, and if the mood is right sometimes i convince myself that it means i have some underlying heart condition and im going to keel over. My mind can be a wonderful thing! Honestly, if you have had kids, i would think it could be hormone related. If you have MAV, i personally think hormones can make it worse( someone correct me if i am wrong). If you have anxiety on top of that, well, then you are like me!
Hang in there and feel free to pm me!
I dont live in Illinois but I do live in Ohio. Our weather has been crazy too!
I know how you feel. It’s hard to live the way we do. I live in Southern California and it’s so beautiful right now and I can’t drive anywhere because of this stupid MAV. I haven’t driven since August and get dizzy just riding in the car. I have to ask for rides to go do any type of errand or to the doctor and I am tired of being a burden to my husband and family.
As far as the pressure thing, maybe the added stress is causing the flare??
Hi nance, I know what type of feeling u are talking about, I feel as if I am dropping down throughout the day, everyday. Does it’s feel like the feeling that u get in an elevator? If so it’s exactly what I feel also, i also have a strange pulling/ moving sensation in my head. It’s quite hard to describe and if I think if u have never felt it it is hard for anyone to imagine. As far as I know I have no ear problems, and no blood pressure problems. This is my main symptom and doctor has said it is migraine related.
So nice to have people that understand. Yes, it is like an elevator, dropping feeling with weird sensation in head. Sometimes I get so worried because my husband was diagnosed with cancer 2 years ago ( now in remission) he’s doing great and was back to work right after chemo and my 11 yr old was diagnosed suddenly a few months ago with Type 1 Diabetes. I worry that if I needed to financially support my family if something happened to my husband or if he got sick, I wouldn’t be able to cause of mav. I had huge amounts of stress prior to my diagnosis, my husband’s and daughters stuff happened a few years after my mav started. It was other stuff going on. I swear stress triggered it. Or… Maybe hormones since it was 2 years after my daughter was born. Don’t know. I just get down. My husband is bringing pizza home tonight from a new place that opened. I’m afraid it will trigger it more. Ugh I hate this
I am right there with you! Have been dealing with MAv since March of this year but have had migraines since teen years. I know there are people far wose than us, but sometimes its hard to keep the right perspective. My husband had cancer 8 years ago, diagnosed just before his 25th birthday. He had chemo, radiation, and major surgery. He is 8 years cancer free! Yeah! We are so thankful for that…but now I get stuck with this crappy MAV. I feel so blessed that my husband has done so well, but feel so down now that we have to deal with this. I know we should all be happy with what we have, but some people get to live their carefree lives without any of this crap! I know I am venting…I guess that’s life…
I had huge amounts of stress (3 close family members died and I was in hospitals daily for 6-8 hours) and hormonal changes (menopause hit) right before this whole mav mess started for me, so I believe that is what triggered it all.
I also am a 17 year breast cancer survivor I was diagnosed stage 2B at age 28 and had lots of surgery, hardcore chemo and radiation. I am glad to hear about the other cancer survivors. It’s a tough disease to battle.
Hiya
I get the dropping feeling too sometimes once a day or sometimes a few times. Its hard to describe it but i feel like i very suddenly go weak and might fall, almost like i am going to faint but not if you get what i mean. Scary as hell first time i had it!
I figure if we all have similar it must just be normal for MAV and its many symptoms
I hope you get a better period soon x
Yes, I get a similar falling feeling, and feel like my body is so heavy. Often get it when I’m laying down. Just one of a hundred symptoms I get with MAV.
Wow, most of us have had so much stress. So awesome to hear positive stories regarding cancer. That makes me feel so much better in regards to my husband. Thank you guys for that. Cancer survivors are truly heroes in my eyes.
Well, I haven’t had the falling feeling in a day or two now. Yesterday I felt about 90%. It was wonderful. I only had a few dizzy feelings here and there. Today I volunteered at the school and was standing outside the school talking to a friend. I started getting sooooo dizzy. I came home and ate alittle something, then took a diazepam. I even had my mom go with me to pick up the kids from school. I am feeling dizzy still. My husband was going to bring pizza home from a new place that just opened the other night. I talked him out of it because I was afraid it would trigger my dizziness more. He just called from w
ork and is bringing it home tonight now instead. Even a decision like this shouldn’t require so much thought. Do I eat it or not?
I usually only feel whooshes of dizziness during my good periods. Today is full dizziness. A spinning feeling without visually seeing things move if that makes sense. It feels like I just got off a merry-go-round. We did get snow finally and it is dropping in temp quick. Weather related maybe. I am thinking, would it go away if i took 4mg of diazepam instead of 2mg (my usual dose)?
Thank you guys for the support This forum really got me through pretty much that past 3 1/2 years.
I to get that strange sensation in my head it’s so horrible and scary and I agree so hard to discribe, one time I was walking to work and it felt as though the floor beneath me just dropped but I didn’t fall i kinda jumped in shock lol
My doctor told me to not eat bananas as they can be a trigger
Also air pressure and weather changes are a big trigger for me
