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Annoying and bizarre fear of getting better


#1

I’ve got this very strange (and infuriating) fear of getting better… I’ve been struggling with this for months but no one seems to get it. I myself don’t, to be honest. Because all I really want of course is to get better and get my life back. It’s what I want most in the world, desperately so.
But… I’m scared of it. Now that I’m on 30 mg nortriptyline, and building up soon again, the fear is getting more pronounced and I’m growing frustrated with myself and even scared I’m holding myself back in illness.
The only way I can explain it is that I’m 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 now… but that I would have a breakdown if I became better, then ill again. I also think I’m 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 (I’ve also just separated from my husband and seem to have “grieved” in two months time, moving on to focus, again, solely on surviving).
Anyway my question is… does anyone share my fear? Or had it? How did you deal with it…?


#2

I don’t 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 yourself—fears about the future (vague or specific) are part of anxiety, which is also a treatable and manageable condition.

I’m 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.


#3

Lucy, I think everyone fears the unknown to a degree and since you’ve accepted your condition, it is your current “known”… maybe just as simple as the unknown being your future which includes healing and getting better. You’ve also made many life changes in large part due to MAV so how to recondition yourself to a “post-MAV” 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 that’s a small blessing since we can recalibrate in tiny little steps. Every day you’re 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 we’ve been through.
You’ve been to h*ll and back… you’ve conquered the past already… don’t let the future hold you hostage. :sparkling_heart:


#4

Lucy you have had a massive change in your life. Are you more scared of things becoming worse because your husband won’t 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 “what if…” 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. You’ve dealt with a relapse before, been living with this for seven years and you will be able to again. I’ve had this for about 23 years now(misdiagnosed repeatedly for most of that) and it has waxed and waned but I’m 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 “me”) 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 aren’t 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 I’ve not been able to do too much, so cruel. I’m upset and that’s okay. I couldn’t take my son to a hospital appointment yesterday, his dad had to and I felt I’d 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 son’s 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.


#5

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.


#6

I’m so sorry you’ve 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 can’t 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. It’s natural to put your children’s wellbeing before your own but you can’t look after them to the best of your ability unless you look after yourself. If you can, schedule some “me time” 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 you’ve said, you aren’t actually scared of getting better, you are scared of a relapse. I haven’t got better yet, i haven’t found anything that helps, but i’m scared of relapses too if i do feel better. They are very common with mav but don’t need to be feared because you’ve 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 don’t know if it’s possible for me to feel better since it’s 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 won’t happen in the future.
This is me being a pot calling the kettle black, i’m useless at dealing with my own anxiety. But you have support here, you aren’t alone.

Worry only makes you suffer twice, so sayeth Newt Scamander. It’s 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, it’s pointless to worry before it happens, it serves no purpose. Worry serves no purpose.


#7

Hey Lucy, I have this fear a lot. Like if I were to feel normal tomorrow, I’d probably have a panic attack because of fear that I’d get a migraine it would start all over again. What helps me is meditation, getting regular/restful sleep, and ensuring that I’m 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 “too fast”. 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, it’s unlikely that you will feel completely normal on it anyways. :grinning: At least that’s my experience.


#8

Thank you all for your replies. It’s been comforting and has also given me food for thought to read your different perspectives on it. It’s also helped me to see more clearly what’s going on. I think I’m scared of change, because I’ve found the changes over the past 8 months since I got ill and separated from my hb really rough. Now I’ve found some kind of “balance” in living with the imbalance of MAV, I worry about change, even if it’s for the better. I don’t feel strong or stable enough yet to deal with another rollercoaster of emotions… and yet getting better is of course what I want most, so if it comes my way I’ll deal with the emotions by practicing mindfulness and if I have another relapse I’ll deal with it so I can live on with the relapse… now crossing fingers and toes that the way I’m feeling carries on improving (baby steps until now but feeling ever so slightly less dizzy).


#9

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. It’s tough for a person like me who likes to plan, but otherwise there’s just too much emotional volatility and disappointment. Also difficult since I’m 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 that’s 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 won’t happen unless I keep up the belief/delusion that it’s possible, so self-encouragement and patience are big for me right now.)


#10

You, and about 90% Of the population in general. I really go off those people who cheerily keep telling you it’s 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 who’ll tell you *nothing can improve without change’. Helen


#11

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. I’m from a backwater town in Canada where the doctors couldn’t 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 I’ve always dreamed of having and I live in a city where I can do really awesome stuff almost every day.

Basically what I’m trying to say is that being dizzy was my worst fear, and now that it’s happened it does suck, but it’s 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


#12

Thank you for your reply. So impressed by your positivity and your having managed to keep on living life, working, meeting your wife… I don’t think I could meet anyone in my current state, I feel way to ill to go dating, but it’s good to hear you’ve 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 didn’t 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 I’m in a situation similar to the stories I had read online, the dizziness just drags on and on. And bizarrely it’s both more horrible than I expected and at the same time more manageable… maybe because human beings get used to anything in the long term?! I’ve definitely started to “make friends” with my hostage taker… to the point I’m scared of change.
Actually, I realised today I’m 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 that’s happened. Really need to work on staying zen !


#13

Oh, the irony of it all never escapes me. Labyrinthitis must have bern misdiagnosed in those poor people on line. It’s an infection and therefore should be time limited. Unlike some infections medics will tell you people don’t get it more than once either so repeated attacks don’t occur, it must be something else not that that’s necessarily much consolation when one’s suffering it I’m sure. I’ve actually read medics saying what looks like repeat labyrinthitis IS actually MAV for, as you’ve since discovered, it’s 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 ‘preventatives’ - a reassuring word that somehow made me think it would quickly go away! Still, as you say,

I’m lucky. I’m 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 doesn’t last ‘for ever’. It just might seem like ‘for ever’ whilst waiting it out. Helen


#14

I don’t think it’s ‘bizarre’ 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. That’s 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 it’s one of the biggest reasons why MAV sucks so badly …

Some good news: I have come so far in the 3.5 years of having this chronically and because I’ve 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 aren’t getting any worse and you’ve lived through all the range of symptoms. At that point recognise it’s not going get worse and try to think positively about how you are going to conquer it.


#15

I agee. Absolutely. MAV can play psychological havoc with our emotions. It’s 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


#16

My progression went like this:

2013-2014: I was at about 10-20% daily. I couldn’t 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 I’m going to stick with it. Don’t think I’ll go higher than 50mg


#17

Thank you, it sounds like you’ve been to hell and (nearly) back, like many MAV sufferers. So good to read how well you’re doing now. You sound like you’re embracing life.