I’m new to this forum. TLDR: I’ve been diagnosed with MAV, have frequent moderate to severe vertigo attacks, loud tinnitus in my right ear, balance issues, brain fog, fatigue, and pain/pressure on the right side of my head/ear. My wife and co-workers have resentment issues with me and my condition. Do any of you experience this? If so, how do you reconcile it?
My story: I’m a structural engineer and work in a very high stress environment (a multitude of projects with very tight deadlines, etc.). My wife and I also have a 17 month old son. To make matters worse, I recently had to have knee surgery to reconstruct a torn ACL. To say that I often have anxiety issues feels like an understatement. I had surgery on my knee on May 30th, and due to circumstances at work my boss refused to allow me to take more than a few of days after the surgery to recover (my doctor wanted me to take a couple of weeks off to recover). So I returned to work a few days after my surgery, in a lot of pain, tired and feeling helpless. I felt like I was drowning. I managed to get my work done and was improving daily until one day at work (June 14th), I had a sudden violent vertigo attack that lasted about 20 or 30 minutes. Then it went away. I had never experienced vertigo before and didn’t know what was going on. About 30 minutes later it was time for me to go home for the day. About 30 minutes into my commute home, I had another violent vertigo attack. It was so bad that I couldn’t see the road and it took everything I had in me to safely pull the car to the side of the road. I called my wife in a panic since I was also experiencing paralysis in my arms and hands and had numbness in my face. I was sweating profusely. My wife told me to call 911, so I did. The fire department and ambulance came just minutes later and took me to the ER. I was constantly vomiting from the vertigo and didn’t want to open my eyes. Lights were making me feel worse. I spent about 6 hours in the ER, they ran a bunch of tests and diagnosed me with BPPV and discharged me. I had constant episodes of vertigo for days. Each episode would last for hours. I went to an ENT and he said that I definitely didn’t have BPPV, but instead MAV (he said the photophobia was a classic symptom). They tested my hearing to rule out Ménière’s disease (especially since I have a family history of MD). He prescribed vitamin B2, magnesium, and nortriptyline. I’ve been taking those daily ever since (that was 6 weeks ago). I still have had almost daily vertigo attacks. I can’t drive anywhere, so my wife and others have to drive me around. I try to do what I can to help around the house, but my vertigo and balance issues limit much of what I can do. My wife is stuck doing the rest. She (thankfully) doesn’t have to go to work, she’s a SAHM. She’s often angry and frustrated at me. I don’t know what to do. Any suggestions?
I am so sorry to read your post, it is so very sad. Unfortunately because MAV/VM is not a visually obvious disease sympathy is lacking as until you experience it you cannot understand how awful it is. That is no excuse but is, sadly, the reality.
Have you been to see an oto-neurologist? That is the person you need to see because whilst nortriptyline is a great starting medication you, like me, possibly need another med as well, in my case topiramate. The combination have been a life changer for me at very tiny doses. So if you can ask to be referred to an oto-neurologist please do so as help is there for you. As for the attitude of others that is a whole different ball game and a great deal of education needs to happen but save that for when you are on meds that are helping you and you feel stronger.
Give it time, it will get better. Many find significant improvement within 2-4 years. As per Margaret you might try other meds but I’d see if vertigo attacks settle down first - it can take months! An increase in dose may lessen the impact of them too, and you can always come back down on dose when the attacks lessen. I was clear of vertigo/vestibular attacks for 6 months at one point but it all came with a vengeance, but has now disappeared almost completely again for the last 3 and my imbalance has all but gone.
Thank you for the words of encouragement. I went and saw my ENT today and he referred me to the oto-neurologist that works in their office/practice. I have an appointment with them in mid October. My ENT also said that I might have an overlap of both MAV and Ménière’s disease, based on the symptoms I’ve been having. They’re going to do another hearing test on me at the next appointment. He increased the dosage on my Nortriptyline to 25 mg, and said to increase it to 50 my if I don’t improve in 2 weeks.
That is very good news. I wish you all the very best with your appointments. Help is on the horizon for you although October will seem a lifetime away it will come round soon enough.
To try and navigate resentment, i found it helped to frame it for myself as “lack of understanding” and “lack of knowledge”. I had to learn to make my self and the illness understood. I used pdf’s of VEDA and other article’s to make it more clear what this VM was all about. And i had to be very clear in my own communication, babysteps, repeat and rinse, were lines that helped me through this process.
The results vary with the characters of the people involved. But certainly for my partner, who did see how ill i used to get but had no idea how it felt or how it came about at first, and felt very “powerless” (must be a better word for that), it made a huge difference.
Educating oneself about this illness is only one part of it. Educating the circle of people around you is also very helpfull. Babysteps. Rinse and repeat.
After all these years i quietly and patiently still repeat some of them phrases.
It is just that the healthy people are all coming from such a different place, and frame of mind. And they need to switch a bit where i am involved, and they need a lil trigger or help to do so
There is only one more thing that may be very helpfull, if it is applying to you:
When one is resentfull oneself, or possibky another strong emotion very much related to resent (guild?), people around us tend to pick up on that, which happens subconsciously. And they may, again subconsciously trigger those feelings in us. It can become a circle, a dance.
I learmed that i better always also check what is in my heart of hearts, and whether the person who was acting resentfull, was maybe perhaps mirroring a bit of subconscious feelings i better work on and get resolved myself.
I find that after i resolved big parts of my feelings of guild, my apologeticness, my anger even (still working on that one), the emotional interactions with people around me improved greatly.
Goodluck and i wish you all the braveness in this world!
x
Lijne, I find this a very insightful post! You are so right on so many levels!! As someone having suffered vertigo in some form or another, in varying degrees for nearly 50 years there has been a lot of learning about other people’s reactions as well as my own to the whole thing.
I DO think that most of the negative reaction one gets from people around you is purely a lack of understanding about how bad it feels when they have no experience to use as a comparison. For most un-affected people, being ‘dizzy’ means how you felt as a child turning round and round till you fell down laughing! "How bad is that, really??? So what is your problem really?? - get over it and stop being a drama queen (or king!!) " At my age now, my peers all say “oh yes! I get that too when I stand up too quickly…” NOT THE SAME THING, PEOPLE!!!
Did’nt mean to rant - but hoping that you, Tetelestai, and anyone else who is battling these feelings can work through them and accept the irritation of others by understanding that it is their ‘ignorance’ and not your fault!!
Weird. I bust my knee skiing in December '16, had ACL and MCL surgery Feb '17 and started having dizziness attacks right after the surgery; similarly I rushed back to work.
However, I got over the dizziness and was doing great until March/April when I had a bad (bad) stomach infection, which ran on for 8 weeks before being diagnosed and treated for chronic Giardiasis. All throughout the stomach problem, I was again having bouts of dizziness, and some classic migraine aura symptoms as well, and then it kicked off bit-time and i was off work for 3 months… But it wasn’t until August I was diagnosed with MAV (or Migraine Variant balance Disorder, as Dr S calls it).
As for the resentment etc - I find if you tell people you have a neurological condition, such as brain stem inflammation, they give you a lot of sympathy. If you tell them you feel dizzy, they think you are a freak. It’s just a fact of life - but people respond better once they know or at least partially understand the problem, and everybody respects a disease or a condition with a name more than just ‘i feel bad’.
Remember that worry can affect different people in different ways. My wife was very frustrated with me until I got a firm diagnosis, since then, it’s been improving. It was mostly fear of the unknown (mine as well as hers).
Hi… I’m not saying it isn’t the case, but I’m curious as to where you get the 2-4 year figure from? That’s still a bloody long time… But it would be nice to have some hope that this isn’t for the rest of my life.
After my acute phase of 5 weeks I got a cessation of 5 months. Then it came back with initially only a couple of weeks clear at one point then fully chronic. It took 2 more years before I started to feel definite improvement
Exactly!!! I can’t tell you how many times after I’ve told people that I have a vestibular migraine which causes me to have violent vertigo attacks, etc., that their response is “Oh, I get dizzy sometimes too”.
I feel like face palming myself Every. Single. Time.
I end up getting the melodramatic thing out and say I have a chronic, progressive neurological disorder. Though when MAV is talking and it sounds like aphasia, that generally does the trick, too.
Or when you tell someone that you have vertigo and they say, “Oh, have you had them do that thing where they move your head around? I had vertigo once and they did that and it went away.”
My response to that is, “You must have had BPPV, benign paroxysmal positional vertigo, and they did the Epley maneuver on you. I don’t have BPPV so that won’t work for me.” By the time I’ve finished saying that, I’m usually greeted with a deer-in-the-headlights look because they lost me at “benign paroxysmal positional vertigo.”
Emily, you should listened to this one talk in migraine summit on how migraines wax and wane during the course of a women’s life depending on hormones and such…
I really hope mine does not become worse than the worst i have seen so far !!!
