OMG I am not doing well this morning and unable to go to work. I woke up dizzy ready to go into a spin, with a bad neck ache, heart was pounding, off balance and I had that tingly feeling in my body the whole night. I can’t look down or I will go into a spin Have to keep my head perfectly still. The only thing I can think of was that I had the day off yesterday and just wanted to relax so I was carrying up heavy wood all day and relaxing in front of the fireplace reading and just chilling for a change. I also took 100mg B2 last night which I hadn’t taken in a while. I never feel well when I take the B2 so I don’t know why I tried it again. Don’t know if that made me worse or was it the heavy wood or what it was. I am so nervous today with this feeling. My eyes feel weird today also as I had to go in and edit my post 3 times II was making so many grammar errors.
I am so sorry to hear… what an awful, horrible feeling! I’ve never experienced anything worse than waking up dizzy. I know it’s my first thought as soon as I wake every single day. Hang in there and take it real slow today.
Thank you. I am moving very slow but I am going to baby myself all day today.
I had these exact mornings for a long time. One thing I noticed is that when I overdo my exercise it can activate MAV during my sleep too much. Especially exercise that is challenging for the vestibular system. And yes, I remember feeling sensitive to everything, including completely innocuous vitamins/minerals. I also remember waking up with heart pounding and muscle skaking/twitching.
Oh Thank you so much. Not that I wish this on you or anyone else but is it comforting to know that someone else experiences these same symptoms. I start heading down the negative path that there is something more seriously wrong with me. As I think back now carrying up that wood multiple times a day put so much pressure on my neck and head. I won’t do that again.
Very common with MAV. The sensory system (visual/vestibular/proprioception) is all messed up and you are in a heightened state of awareness. Throw a little insomnia and headaches into the mix and you start to wonder if you are dying… But no, it’s just a healthy dose of pure suffering without anything being seriously wrong.
Hi. Rosjane. You sound just like me! I was diagnosed with MAV in March 2017 after suffering a horried vertigo attack in the February, and to be honest I have never quite recovered from it!I have a family history of migraines with aura and have had vertigo attacks over the years but they have become chronic. I have all sorts of problems but I also get the tinging, I had it in my left leg with a numb feeling last night.I get neck pain as well and have worn discs in my neck. Also the B2 at 100mg made me feel terrible but I am taking 50mg of riboflavin 5 phosphate in the morning as it is meant to be a more absorbable form of B2. I have not worked since August as this is ruining my life. I truly sympathise this is awful.I keep getting my words round the wrong way as well!R.
I know this is horrible when you get these attacks. I was doing good up until Christmas then it went out of control. I have to get myself back on track. It may take awhile. If it doesn’t, then I may have to get medication from my doctor. I am missing work even though I have sick days but I am feeling like an invalid. While I am home today I am going over my journal of all my triggers. I have to practice saying NO when people ask me if I am able to commit to something. Sometimes I will say yes when I know that it is going to send me over the with my MAV. I made plans two days ago to go see a movie tomorrow night and then out to eat with my friends. I just have to say no. The theatre at this point will send me over the edge with the loud noise and screen movement and eating out will be another problem with the lighting and food choices then my friends will be chit chatting while I am ready to go into a spin. I have to take care of myself at this point. That B2 you are taking sounds like a better choice and it is only 50mg.
Hi. Its a nightmare. I am also sensitive to supplements and drugs but am on a low dose of a betablocker,it probably doesn’t do anything but I am too scared to stop it. If you are in the States you have a good choice of supplements. I have trouble getting the vitamins at doses I want in the UK. Pure Encapsulations are a good choice and I take their magnesium, also they do a good B2 at 25mg but I can’t get it here. Also Douglas Labs do a 10mg B2 in the States but I can’t get it. I have a lot going on as I also have UC and been diagnosed with parathyroid disease and awaiting a operation. That causes abnormal calcium levels which can make dizziness worse. Might be worth getting your calcium and PTH levels checked along with vitamin D. I used to go to a osteopath but that makes the vertigo worse now. I have had a very stressful time which doesn’t help. Lets hope we get some relief soon!R.
It’s really hard to determine what you can and can’t do. I keep flipping between conservative and liberal approaches every few weeks, always testing the line. I feel that if I don’t do that, I either become a hermit (too conservative) or I don’t recover (too liberal).
I can’t go near an osteopath or chiropractor. They just made me worse too. I was going through a stressful time too which just wrecks havoc with just about every system in the body. That 's a good point with the calcium, vitamin D and PTH levels. I am lactose intolerant and I know I don’t get enough calcium or enough sunshine for the vitamin D. That is definitely worth having checked for peace of mind.
That so sounds like me. I flip between the fearful hermit who stays housebound and the courageous idiot who overdoes things. I’m always asking myself, “is this too much?” And at the same time “am I doing too little?” Grr. Exhausting but philosophically amusing
I know I am testing the waters all the time but I tend to go overboard. Instead of trying one piece of dark chocolate to see if will cause any increase in symptoms I try 6 pieces at a time because I can’t control myself. And then right after that I spend hours at the mall in those bright sickening lights. So I like the hermit idea. haha
It is exhausting. With me the diet was working and the theraspecs were working so then what do I do, I go off the diet and start binging on dark chocolate and then stop wearing my theraspecs in the brightly lit stores. And then lifting heavy wood all day to relax in front of the fireplace and that backfired on me. By the way my symptoms are slowly starting to subside because I stayed in the whole day with my theraspecs on and my head completely still and avoiding all trigger foods. See being a hermit does help MAV. haha. just kidding. I will let you know tomorrow how I wake up. I pray I wake up normal.
To be perfectly honest it sounds like you haven’t come to the mindset that this is the new reality for now and every time you overdo it youre just causing more hell for yourself. You need to dig your heels in more with telling people no so you can recover (live too but understand your limits with maximum exposure) or you’ll continue down a very rocky path and you need to realize your limits. Dip your toe in, don’t indulge or you’ll drown like the chocolate example. Some people have reactions within 10 mins (me) others are a day later or 2 days later. You’re creating chain reactions that your brain is unhappy with and frankly they scare you a lot (I don’t blame you for that!)
Willpower is everything with this condition.
Don’t overdo the theraspecs if you’re at home (if your lighting is natural and not florescent or bright LED). You want your brain to compensate naturally but not to retrain the brain that it has to rely on theraspecs always for every lighting situation.
I’ll leave you with this great example I learned. You only have so many spoons allocated in a day due to your brain’s threshold and every time you push the limit you lose a spoon for that day and possibly next day (hence really bad day trickling into next day).
I hope you sleep better tonight and praying for no spins in the morning!
Hi. I don’t know why but the osteopath makes it worse at the moment, seems it triggers the vertigo. I must go to the dentist, thats the one place I never minded going!,but now I absolutely hate it as I hate lying down in the chair and worrying that the vertigo will start. When you get a vertigo attack how long does it last?You will probably test fine for parathyroid disease but it is always worth investigating as it often goes undiagnosed.High doses of vitamin D make me feel terrible and I have to be careful with any foods containing calcium. So much going on. Hope we get back on the right track.R.
Yes, I haven’t come to grips with this disorder. I am trying to get back to being normal again and I have to realize I just have to tell people I can’t do this activity or I can’t eat this food, I will do or eat what everybody
Is doing at the time and then I am the one who suffers. Im just realizing now how crazy this is. I have to get myself back on track:
I dread the dentist too. Last time I was there I was lightheaded. I told the hygienist do not move the chair up and down so I could rinse. I just moved myself up to get the cup instead of moving the chair. That helped.
I’m thankful this morning I didn’t wake up with nausea or vertigo. I did wake up with an excruciating headache and neck pain though but I will take that any day over the spinning. I am going to stick with trying magnesium until I see my doctor again but I seriously think I may need some medication if I can’t get this under control.
Like that one. Summed up in a nutshell. Not that we should have nutshells really. I’m sure they are on somebody’s ‘banned’ list.
One of the hardest things most people find with MAV is adapting to the new norm and I guess the younger you are and the faster and more recently MAV hit the worse it is. To the outside world such restrictions seem from another planet. I remember one sister-in-law who kept saying ‘yes, I know, but you do have to go in supermarkets. Everybody does”’ over and over, No, wrong. It’s not imperative and, if you don’t, you will go on breathing, and the World will continue to revolve. I’m living proof of that. Helen