Have some questions in regards to MAV

Oh my 12 years. I'm so sirry you've had this that long. I've had it for a year and I'm sick of it. You know that's one of the things that worry me is that in twelve year I still have this I'll be 65 then. I have a hard time now with things like house work and I've never asked for help with it but now I'm having to ask, thankfully my family is supportive.

The floor moving is awful when I have it bad my legs get pretty sure spending so much time trying to stabilize myself. Stores and sidewalks are bad for me.

My ENT says I don't have nystagmus either, but don't days I feel like my eyes are not able to focus and all over.

What other symptoms do you have? Are you on any meds? I am afraid of the meds I wish I wasn't. I tried Amitripyline a couple of weeks ago and had a bad terrifiying really attack so now the gave me nortriptyline which is in the family of meds and I'm so afraid of it.

I really don't understand with so many people with this they can't figure it out.

Sorry to ramble, hope to hear from you. Thanks for talking with me

Well these new symptoms of floor moving & etc have only been this past year.

I have horrible light sensitivity, sound sensitivity; stores are the worst for me. I get ice pick headaches. My eyes hurt a lot and I feel off focus a lot. Staring at computer screens or my phone makes me dizzy. My head feels heavy a lot. Dizziness/lightheaded. I started having vertigo attacks now out of nowhere with sweating, shaking, nausea, and vertigo that lasts the rest of the night.

I had one last night and today I feel better but my head feels heavy and I feel dizzy. It's horrible.

Sounds like you have migraines for sure.

You said you've had vertigo for 12 yrs what type of vertigo the spinning or rocking? Mine is rocking, bobbing, falling sensation, vision off usually right before the migraine vertigo, headache, neck pain and upper shoukder pain, nausea, and more

You mentioned starting to have them with sweating, shaking nausea and dizziness, I was going to post and ask if anyone has hot flashes that have dizziness before the flash with shaking nausea. I've noticed over the past few months I get this dizzibess before my hot flashes. I also get anxiety out of nowhere. I'm menopausal it's my 3rd year. Are you in menopause? If so could be part of the hot flash

Here's my vertigo story. I'll put asterisks *** by all the answers to ur questions incase you wanna skip the rest.

I got my first vertigo in 2004 after drinking 3 energy drinks in a row. I went to hospital few days later and doc said I had 2 severe inner ear infections. I was given antibiotics and the dizzy went away for a week then came back and has been around ever since. ***When I first got it, it was spinning and felt like I was rocking and muffled ear in loud places, heavy head, etc.*** As time went on, it gradually got better and I learned to avoid triggers like watching TV in the dark and being on a computer too long. One thing that has never changed is it has always been unpredictable. I could be fine one day and wake up the next with vertigo. I could be fine for months then have it for months. It was so weird.

In 2013, I got an eye infection that caused horrible eye migraines that triggered my vertigo and I haven't been right since. ***NOW, my vertigo has been off balance, uneven floor, spinning, lightheaded, dizzy, nausea, light sensitivity, sound sensitivity, ice pick headache, eye pain, ear pain, ringing in ears, fullness in ear, heavy head, nausea. I get neck headaches, A LOT.***

***I get the same exact thing you have with the anxiety and everything. It's so weird. I'm glad you mentioned that because I couldn't figure out why my anxiety was so bad out of nowhere and then that episode happened. It's like I get real hot all of a sudden and then I feel things slowly moving and the vertigo comes. I start shaking and sweating and my heart races. Eventually I quit the sweating and the shaking but the vertigo stays. I felt better after I finally fell asleep (couldn't at first bc of nausea) but it still made me dizzy the next day with upset stomach and again today (minus the running to the bathroom). What's weird is I was feeling really good few days before it came along other than my anxiety coming up and some night sweats. I don't think I'm menopausal I'm only 28 years old. I do have polycystic ovarian syndrome and hypothyroidism. All I know is these new vertigo episodes are causing me really intense anxiety because I'm so afraid of them.***

***How long do your shaking sweating nausea vertigo episodes last? Mine usually come in the evening and last the rest of the night.

***Does that mean it's a migraine happening? Is that how it happens for you?

***Is showering hard for you? I find it makes me extremely dizzy once I'm done. I have to actually work myself up to shower because I'm starting to hate it so much.

I am wondering since you have anxiety, i hope i can explain this correctly. Its possible that with the dizziness the fear and worry about it is casuing the anxiety to come on.  You said you'll feel hot (this could be the anxiety trigger) because when you feel hot your mind automatically thinks "oh no i"m going to getting dizzy and of course the sub-consious then sets it up, hot mean dizzy, so then you feel the dizziness and the shaking, sweating and heart starts to race, these symptoms are classic for anxiety attacks.  The dizziness now because of the worry/anxiety will hang around for the rest of the day or night and into the next day, because the mind is worried about first the dizziness and second how long is it going to last and how bad will it be.  Does that make since, gosh I hope i explained it so it does.  Also nausea is a part of anxiety.

Anxiety symptoms:

Numbness and tingling

Dizziness

Chest pain

Headaches

Neck tension

Stomach upset, nervous stomach

Pulsing in the ear

Burning skin

Fear of impending doom

Nausea

Shortness of breath

Electric shock feeling

Shooting pains in the face

Heart palpitations

Weakness in legs

Feeling like you are going crazy

Inability to rest

Sleep problems

Tremors & shaking

Sweating or chills

Restlessness

Apprehension of something bad

Irratibility

Muscle tension

Startle easy

With my anxiety it started after the dizziness hit me, the dizziness was so scarey, I had anxiety just waiting for and wondering how bad it was going to be that day and how long it would last.  So I had extreme anxeity from the time i woke up until i went to sleep, I was obsessed with it all.  I literally could not think about anything else.  I was a stressed mess.  Along with anxiety comes stress, its all a part of each other.  

Have you had your thyroid levels checked?  I know when mine are off and I'm getting to much of the meds, my anxiety goes up, as do my night sweats,  I don't know much about polycysatic ovarian syndrome, but has that been checked lately, does it cause night sweats and hot flashes?  If so that could be why it sounded like menopause to me.  

***My shaking sweating and nausea only last a few mins and the dizziness comes right before and thru the hot flash, then it may last a few minutes after but goes away.  

***My migraine I guess thats what it is, I usaully get a day or two before the actual head, neck and upper shoulder pain, I get my vision off, either I see like smokey vision I call it, or one of my eyes will not focus so great, then about an hour before the headache and stuff starts, I will feel the rocking dizziness start, then comes the headache, neck and shoulder pain, this can go on for 1-3 days.  At this point I take my xanax to start to calm my anxiety I know will come and the inner ear things that happen causing the dizziness.  

***Showering is the worst, I get anxiety before the shower.  I get  dizzy washing my hair, just moving my hands up and down on my head will make the shower feel like its moving, then bending over to shave my legs, this will send me over the edge.  Of course by the time I'm done, everything is moving and that will last for the rest of the evening.  

Bending forward in any motion is bad for me, mopping, sweeping, vacuuming will make me dizzy for 2 days, dishes does it to, cooking dinner coz i'm moving back and forth around the kitchen..  Its so crazy how it works.  

I've had to learn to try not to let it cause so much fear and anxiety in me, and this is helping.  The dizziness is there, but I'm not freaking out about it, and anxiety, worry and stress make its a thousand times worse.  I had awful anxiety for about 8 months.  Some of it was my thyroid levels where off, but hopefully those are getting back to normal, last month they where back in normal range and I will have it checked again next month and hope its all good.  I've also started therapy for health anxeity, because thats what I have, I worry about getting sick and having a disease and when this dizzy non sense started, my health anxiety returned with a vengence.  I think because I thought they were missing something with the dizziness, but when I took that med a few weeks ago and it helped the dizziness and headaches, that when I knew it was MAV, coz the ent said the only real way to know is if you take a med and it helps, to bad it caused a bad reaction.  So now no meds, accept the occational xanax.  Been doing VRT for almost 3 months and am making improvements.  Slow improvements but they say it all takes time.  

Do you have anti anxeity meds, like xanax, valium, ativan, something that will calm your anxiety?  Do you take any meds for the dizziness?  Maybe you could speak to your doctors about the anxiety and see if they can give you something that can help when it gets bad.  

 

That might explain the night sweats because I usually take my thyroid medicine about 6 am before breakfast but I ran out and had to wait on pharmacy & take it about 4 pm the other day. Because of that I had to take it at 3, then 2, then 1 etc. etc. & work my way back to the morning. When my thyroid medicine is off like that it causes intense anxiety which is why I thought I was having it. But then the dizzy spell came so I thought maybe it was related.

I'm the same way with showering. I'm extremely dizzy afterwards. Yes, I'm the same with cooking and vacuuming, too! I have to clean a little at a time because too much movement at once makes me dizzy.

I spent years fighting doctors trying to convince them that it wasn't my anxiety causing the dizzy, but that my dizzy causes anxiety. I agree that I think when the vertigo episode hits that I get anxiety. Because it starts out with me getting hot and like I'm going to pass out (not lightheaded tho, just dizzy) and then I start to freak out; and then the vertigo comes on very very slow and then I calm down after I realize "hey, it's just your vertigo. You're not passing out."

I'm usually okay with dealing with my anxiety and dizzy. But these new episodes are causing me to become a recluse.

***What medicine did you take for the MAV that helped? I'm gonna ask my doctor for it. I'm just going to have to doctor myself if none will help me.

I've tried so much anxiety medicine - Zoloft, Paxil (worked but I gained 150 lbs which I had to lose), Celexa, Valium, Klonopin.

The klonopin worked best but it made me tired which made me dizzy. Celexa was the worst, it made me so dizzy I thought I was dying. It woke me out of my sleep. I can't take any anxiety medicine because it makes me so dizzy and sick. Because of this I have a horrible fear of taking medicine.

I so badly wish I could find something to help my anxiety. I believe it would help me a lot.

I feel like I'm at my wits end.

The med I tried for MAV was amitriptyline, it worked great for the dizziness, but about 4 days after taking it I began having waves of anxiety until finally I had some kind of awful attack, my hole body shook, my legs couldn't hold me up, the dizziness was so bad it felt like someone was throwing me side to side, at one point I felt like I was hangin upside down and after I stopped the med for about a week I had these odd muscle twitchs in my arms.  Then the ENT gave me nortriptyline which is in the same family as the amitriptline, and I'm afraid to take it..  i've read so many things about people saying they found meds that worked for awhile, then had to change them or add other meds to them.  I'mso afraid of meds now I just can't go thru all that.  I'm really hoping the VRT works and getting my anxiety under control will help.  The only thing I'm having now that i dont like is daily headache and neck pain. They say it goes along with MAV, so I'm not sure what to do about it.  Seems the only thing I can take is xanax and I only take it wwhen i  have to.  

I tell you I hate this disorder whatever it is.  The one thing I find odd is that everyone with it is on anti depessants of some kind.  That says something about how the brain is working, but how the vertigo play into it I don't know.  I know you get dizzy with anxiety, but that usually goes away as soon as the anxiety goes, so I can't figure it out.

I work full time and by the end of each week I'm pretty tired.  I use my head all day looking at the computer, answering phones, moving around the office, so I usually have some type of dizziness through out the day.   Like now Im sitting here and I feel like I'm slightly bobbing and my head hurts and my neck is tight.  Then maybe in an hour it will be nothing.  The other thing i don't like is, it changes all the time, today, rocking, tomorrow anxiety and bobbing.  It makes no sense.

I was at my wits end a few weeks ago, thats when I decided its time to talk to someone, I can't do this alone and fix it.  It may not get rid of the dizziness but maybe help me understand the anxiety and how to handle it.  I think I have some depression to, sometimes I just cry, its all so frustrating.

Have you considered Propranolol or Atenolol?  These are beta blockers that treat migrane and are used off label for anxiety.