Iāve got this very strange (and infuriating) fear of getting betterā¦ Iāve been struggling with this for months but no one seems to get it. I myself donāt, to be honest. Because all I really want of course is to get better and get my life back. Itās what I want most in the world, desperately so.
Butā¦ Iām scared of it. Now that Iām on 30 mg nortriptyline, and building up soon again, the fear is getting more pronounced and Iām growing frustrated with myself and even scared Iām holding myself back in illness.
The only way I can explain it is that Iām terrified of getting better and then relapsing all over again. I have had dizziness relapses twice now but never have I been ill for as long as this time. It feels to me like I can cope with this illness right nowā¦ but that I would have a breakdown if I became better, then ill again. I also think Iām putting all my energy and focus in coping and managing to be a single mum with dizziness, so much so that I have no head space left to deal with the rollercoaster emotions of change (Iāve also just separated from my husband and seem to have āgrievedā in two months time, moving on to focus, again, solely on surviving).
Anyway my question isā¦ does anyone share my fear? Or had it? How did you deal with itā¦?
I donāt think you are giving yourself enough credit. You are managing now, and you would manage again in a relapse.
Based on what you are saying, you are creating scenarios that might or might not happen and causing yourself anxiety because of this. The classic approach to this kind of thinking is mindfulness practice, which involves being present in the moment and not letting your thoughts vault into the future (worst-case or best-case scenarios) or dwell in the past (you seem to do a good job with this, better than me). Mindful breathing and mantras and just generally being engaged with the present moment are among the tactics associated with mindfulness, and I have no doubt there are excellent resources online for mindfulness practice. This is something you can definitely address yourselfāfears about the future (vague or specific) are part of anxiety, which is also a treatable and manageable condition.
Iām making efforts to separate the aspects of my experience that are my responsibility to fight (depression and eating disorder) from the ones that I need medical answers for (chronic migraine and chronic myofascial pain). There is something empowering in that and helps me feel less helpless.
Lucy, I think everyone fears the unknown to a degree and since youāve accepted your condition, it is your current āknownāā¦ maybe just as simple as the unknown being your future which includes healing and getting better. Youāve also made many life changes in large part due to MAV so how to recondition yourself to a āpost-MAVā Lucy.
I think one of the things we all have to look forward to (and with some trepidation) is that the healing comes slowly for us. In some ways thatās a small blessing since we can recalibrate in tiny little steps. Every day youāre recalibrating little by little. Of course all of us want to get better immediately, but I wonder if we could handle it honesty after everything weāve been through.
Youāve been to h*ll and backā¦ youāve conquered the past alreadyā¦ donāt let the future hold you hostage. 
Lucy you have had a massive change in your life. Are you more scared of things becoming worse because your husband wonāt be around to help out if needed? The thought of being on your own and ill is something I struggle with sometimes and your recent split is probably impacting your anxiety levels.
Isengara is right to advise trying to live in the moment, day to day rather than extending a āwhat ifā¦ā scenario that is in the future and might not occur. Deal with what you can realistically do in the present.
If the nort is working for you then IF you have a relapse after coming off it, it is likely to work again, or another med will. You know that you can improve with the help of meds.
You sound incredibly strong dealing with this, children and a break up so give yourself credit. Youāve dealt with a relapse before, been living with this for seven years and you will be able to again. Iāve had this for about 23 years now(misdiagnosed repeatedly for most of that) and it has waxed and waned but Iām still here.
However, this summer when it was worse than it has ever been the neuro prescribed Pregablin and I was too chicken to take it (afraid of the side effects and if I would still be āmeā) and my GP also was very reluctant to prescribe it. I did really wonder about whether I actually wanted to get better on some level, why was I so fearful? It seemed to make no logical sense, so you arenāt alone in feeling strange about the prospect of getting well.
I was prescribed pizotifen as an alternative, it seemed to be working incrementally and last week I had my best day for years (what joy!) but woke up next morning dizzy and since then Iāve not been able to do too much, so cruel. Iām upset and thatās okay. I couldnāt take my son to a hospital appointment yesterday, his dad had to and I felt Iād let my son down but I tried to think more positively about it: I organised support so that he got to the appointment, he spent time with his dad and his dad got a better insight into our sonās condition.
You are dealing with a lot right now, the brain does not always work logically. You are improving woohoo!! cut yourself a lot of slack about your irrational feelings and keep venting here as much as needed.
It is a rough time, so give yourself time to feel everything, from fear to sadness. Maybe you need also to grieve your separation from your husband, and because you are focused on feeling well, you are not allowing to feel that. We are here for you.
Iām so sorry youāve had to deal with other losses as well as this condition. My grandfather passed away last year and i was too ill to go see him, too ill to go to his funeral. I barely saw him in the past 2 years because of being ill with mav. You need time to grieve your loss but you feel like you canāt because you have to be there for your children. But remind yourself that in order to care for them you need to care for yourself. Itās natural to put your childrenās wellbeing before your own but you canāt look after them to the best of your ability unless you look after yourself. If you can, schedule some āme timeā daily to sit and process your feelings, write in a journal, or speak to a friend ir family member, or talk here on the forum, use the personal diary section to process your thoughts. It could be when the kids are in bed, or at school, or ask someone to look after them for an hour.
From what youāve said, you arenāt actually scared of getting better, you are scared of a relapse. I havenāt got better yet, i havenāt found anything that helps, but iām scared of relapses too if i do feel better. They are very common with mav but donāt need to be feared because youāve already been coping with this beast for so long, you can do it again. If you felt better once, even if you relapse, you will get better again, because you know its possible to feel better. I donāt know if itās possible for me to feel better since itās not happened yet. If you do relapse you can look at what you were doing before it happened and possibly fibd a trigger, which you then can actively try to avoid so it wonāt happen in the future.
This is me being a pot calling the kettle black, iām useless at dealing with my own anxiety. But you have support here, you arenāt alone.
Worry only makes you suffer twice, so sayeth Newt Scamander. Itās true. Worrying that something could happen makes you suffer needlessly. Worry about something when it actually happens if you are going to worry at all, itās pointless to worry before it happens, it serves no purpose. Worry serves no purpose.
Hey Lucy, I have this fear a lot. Like if I were to feel normal tomorrow, Iād probably have a panic attack because of fear that Iād get a migraine it would start all over again. What helps me is meditation, getting regular/restful sleep, and ensuring that Iām not adjusting medications too quickly. If I get scared I slow down my breathing and just pay attention to the breath and reassure myself that normal is not going to happen ātoo fastā. But honestly, most of my fear I think was just changes in medications / anxiety / and low sleep. I think if you are on an antidepressant, itās unlikely that you will feel completely normal on it anyways. 
At least thatās my experience.
Thank you all for your replies. Itās been comforting and has also given me food for thought to read your different perspectives on it. Itās also helped me to see more clearly whatās going on. I think Iām scared of change, because Iāve found the changes over the past 8 months since I got ill and separated from my hb really rough. Now Iāve found some kind of ābalanceā in living with the imbalance of MAV, I worry about change, even if itās for the better. I donāt feel strong or stable enough yet to deal with another rollercoaster of emotionsā¦ and yet getting better is of course what I want most, so if it comes my way Iāll deal with the emotions by practicing mindfulness and if I have another relapse Iāll deal with it so I can live on with the relapseā¦ now crossing fingers and toes that the way Iām feeling carries on improving (baby steps until now but feeling ever so slightly less dizzy).
So glad that you are feeling a bit better. There will inevitably be ups and downs and I try not to get too attached to either: otherwise, after a good spell I get discouraged by a bad day, and a string of bad days makes me think I will never get better. I find a more sustainable approach is to live each day the best I can according to how I feel: being mindful of what my condition is each day and adjusting my activities accordingly. Itās tough for a person like me who likes to plan, but otherwise thereās just too much emotional volatility and disappointment. Also difficult since Iām someone who need structure to prevent sliding into self-destructive behaviour (and yep, that has happened consistently over the last year).
But I echo another comment that your fear is not of getting better, but of a relapse. And thatās not unreasonable, but if that does happen, you will be able to manage, one day at a time. Human beings have remarkable emotional resources. Many people say they never knew what they were capable of before becoming parents, for example. You have to just keep believing in yourself. (I have an enormous task of physical recovery and weight loss ahead of me and it feels absolutely insurmountable, but it wonāt happen unless I keep up the belief/delusion that itās possible, so self-encouragement and patience are big for me right now.)
You, and about 90% Of the population in general. I really go off those people who cheerily keep telling you itās all for the better. What do they know, eh. Emotions are so often lead by association of ideas which stem from past experience. The adage I like best about change comes from Alexander Technique practitioners whoāll tell you *nothing can improve without changeā. Helen
I used to have an irrational fear of being dizzy. It was something I never wanted to experience and it would cause me great anxiety when I got up too fast and felt light headed or when I felt off balance for whatever reason. Basically, being dizzy was one of the worst things I thought could happen to me
Little did I know that life had 24/7 dizziness in store for me! I am almost 6 years into MAV and while I have made significant improvements I am still not back to normal. A good day I am maybe 80-85% and on a bad day I can go back to 50-60%
Despite the dizziness, life is pretty good. I moved from Canada to the US specifically to seek better treatment. Iām from a backwater town in Canada where the doctors couldnāt figure out what was going on. So I moved to Boston. Here I met my wife whom I love very much, I got the job Iāve always dreamed of having and I live in a city where I can do really awesome stuff almost every day.
Basically what Iām trying to say is that being dizzy was my worst fear, and now that itās happened it does suck, but itās not all bad. If you get better then relapse (which unfortunately has a chance of happening) you will get through it, and you will be a stronger person. Our bodies and minds are surprisingly resilient
Thank you for your reply. So impressed by your positivity and your having managed to keep on living life, working, meeting your wifeā¦ I donāt think I could meet anyone in my current state, I feel way to ill to go dating, but itās good to hear youāve managed to get a life back even if still symptomatic.
Are you on any medication? What helped you go up to 80-85%?
Like you dizziness was one of my worst fears, or at least, long term. When I became dizzy for the first time 4 years ago, after my sons birth, I read some terrifying accounts of labyrinthitis (this is what I was told I had by my Gp) online, of it lasting 3 or more years. I genuinely thought to myself that I would not be able to survive that, it was horror beyond anything I could imagine. Then my dizziness went away, after 3 months or so, and I didnāt think about it anymore. I went on to finish my PhD, live a busy life, work etc, until it struck again. Now I can see Iām in a situation similar to the stories I had read online, the dizziness just drags on and on. And bizarrely itās both more horrible than I expected and at the same time more manageableā¦ maybe because human beings get used to anything in the long term?! Iāve definitely started to āmake friendsā with my hostage takerā¦ to the point Iām scared of change.
Actually, I realised today Iām scared of the on-off-on-off period of dizziness that I might have to go through before I get better, because it comes with so many up and down emotions and I already feel so rough what with everything thatās happened. Really need to work on staying zen !
Oh, the irony of it all never escapes me. Labyrinthitis must have bern misdiagnosed in those poor people on line. Itās an infection and therefore should be time limited. Unlike some infections medics will tell you people donāt get it more than once either so repeated attacks donāt occur, it must be something else not that thatās necessarily much consolation when oneās suffering it Iām sure. Iāve actually read medics saying what looks like repeat labyrinthitis IS actually MAV for, as youāve since discovered, itās MAV that hangs around. The whole condition really is rubbish and I often chuckle at my own blissful ignorance at my relief to finally, after twelve years, getting a diagnosis in 2015 and discovering I could take āpreventativesā - a reassuring word that somehow made me think it would quickly go away! Still, as you say,
Iām lucky. Iām quite a few steps ahead of you and can see the light at the end of the tunnel. MAV does eventually seem to fade into the background. It doesnāt last āfor everā. It just might seem like āfor everā whilst waiting it out. Helen
I donāt think itās ābizarreā at all - I think this feeling is completely normal & entirely understandable. I think this is one of the central issues with MAV and ramps up anxiety levels and causes depression. Thatās in part why so many MAVers are prescribed strong and higher doses anti-depressants beyond what is required to minimise as much dizziness as possible. And itās one of the biggest reasons why MAV sucks so badly ā¦
Some good news: I have come so far in the 3.5 years of having this chronically and because Iāve seen progress, albeit extremely slow progress, my anxiety has disappeared and my depression is so much better (and this without medical help these days). I occasionally get negative thoughts still, but they are no longer at the level of the gut-wrenching dread I used to get.
Even if you are not getting much better, at least recognise when you reach the point when your symptoms arenāt getting any worse and youāve lived through all the range of symptoms. At that point recognise itās not going get worse and try to think positively about how you are going to conquer it.
I agee. Absolutely. MAV can play psychological havoc with our emotions. Itās not surprising. The sudden inability to balance properly reduces independence and increases vulnerability the result of which people suddenly realise they are not as much in control of their lives as past experience has led them to believe. The resultant uncertainty understandably causes anxiety. A perfectly normal, if unsettling and inconvenient, reaction. Helen
My progression went like this:
2013-2014: I was at about 10-20% daily. I couldnāt stand for any period of time and I constantly rocked on my feet. Stupidly I kept working during this time for some reason
End 2014: I started vestibular rehab. This got me to 20-30%
2015-2016: Switched to a different clinic and continued vestibular rehab.
End 2016: Started Gabapentin 300mg. Titrated up to 900mg over a number of months at which point I could no longer tolerate the side effects. This got me to 40-70% daily. I find Gabapentin really raised my floor so my bad days were no longer so bad
Early 2018: Started Nortriptyline at 10mg. Have just gone up to 50mg as of yesterday. This was the biggest help, as it really dulled the dizziness and migraines. Adjusting has been tough and it makes my heart beat quickly which I do not like, but it seems to be working so Iām going to stick with it. Donāt think Iāll go higher than 50mg
Thank you, it sounds like youāve been to hell and (nearly) back, like many MAV sufferers. So good to read how well youāre doing now. You sound like youāre embracing life.