Pre-Treatment Options > Pre-Treatment Options

Just Diagnosed - Managing Symptoms

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KristenWS:
Greetings - I am a new member to this group and was recently diagnosed with a 1cm AN.  I was initially diagnosed with vertigo and then Labrynthitis by my GP who then sent me to an ENT who ordered the MRI where the AN was found.  Like I am sure all of you, I never thought in a million years that this would be the outcome. I am scared and so very worried.  I will add that I have an anxiety disorder, which does not help me manage the worry and subsequent symptoms that go along with that - kind of a catch 22 because the symptoms of anxiety mirror the symptoms of AN, at least for me.

I am not to the stage yet where I will be making decisions about treatment as I have my first otologist appointment later this week so trying to take things one day at a time.  What I am struggling with is the symptoms (dizzy, loss of balance, hearing loss, fatigue) and feel like if I could manage these symptoms, I will be able to face this next stage of making treatment decisions more easily.

As I am sure like many of you, I feel like my life has been stripped away. My symptoms were so severe in the beginning I had to use a walker to walk and could not leave the bed. 19 days on prednisone has helped, I am able to work (work from home) but I cannot drive, walking like I'm drunk/unsteady and ear feels like it is clogged. With the prednisone, I feel like the hearing has improved a bit.  I have had to quit my beloved softball league, cannot work out, music and going to concerts are my passion (probably 5-10 shows a year) and I love to dance.  Basically, I work and I sit.  At least I can now read, which is also one of my passions.  I am very depressed because of all this and it is very demoralizing.  I am also so anxious about other symptoms arising -- any little twitch in my face makes me feel like paralysis is going to hit.  On top of that, we are supposed to be going on vacation to a lake cabin at the end of the month where we spend 95 percent of our time on a boat (!), not to mention, I would love to have a beer while on vacation but I guess having the beer is the least of my worries. 

I am very blessed and grateful to have a full life with many passions and I don't mean to whine.  I feel like I will be able to face this next stage better if I felt more myself but no one seems to be able to help with the symptoms. I am told to accept the timeline.  I feel like once I am off the prednisone, the severe symptoms are going to come back and that in itself makes me anxious, which causes all those dizzy feelings etc.  Can anyone suggest ways to decrease symptoms, tips, questions to ask the doctor.  It has been a month that I have been living like this and it is really wearing me down and taking a toll on my family as well (husband has to take time off work to drive me everywhere etc).  From reading some of the boards, I am fearful that that this is the way the rest of my life if going to be.  Life can sure turn on a dime can't it.  (51 year old female, 1 teenage daughter, husband that is trying to hang in there, Boston, MA).  Thanks for any guidance you can provide and I hope all are doing ok.

mac84:
Kristen, welcome to the club! 

I have an AN that is 1.4cm and have been on the watch and wait for around 4 yrs. My balance isn't great but my right side has taken over and I suspect yours will too. Once the prednisone has done it's job you'll start getting back to more of a normal feel I think. Your anxiety is likely magnifying things and making it a little worse. Do what you can to handle that part and let the brain do what it needs to to compensate for the attack on the balance nerve. You'll have good days and bad days and will learn what triggers your wonkyness. But you'll do fine!  Read all you can and accept it for what it is and you'll learn to live with it and keep on keeping on!

Good luck! 
Cary

KristenWS:
Oh Cary, thank you for your note. I am crying just reading this and truly am still in denial that this is happening and the course of my life is changing forever, overnight. 

Thank you so much for your kind words.  Today is a bad day where the ringing is significant and yes, that makes my anxiety spiral.  Do I feel a twitch on my face, am I going to wake up with facial paralysis, will I ever be able to walk with out looking like I have been drinking.  I keep thinking about how we are having to relearn everything, almost like the movie "Regarding Henry."  Also, the toll this is taking on my family is significant, which also makes me anxious.

I am really looking forward to seeing the otologist this week to see if they can assist.  This all started on June 25th, diagnosed on July 13 so I guess not that long but it is almost like if I had some notice, "This will be your last day of feeling normal and then you will have to dig in," I could handle it better. And would also be able to handle the next phase if I felt more like myself. 

Life can turn on a dime, can't it?  Thank you again for your very positive message and that there can be hope.  All the best to you as well.

notaclone13:
Hi Kristen,
What Cary said is very true. It is perfectly normal to be freaked out post diagnosis, but as you get to know the nice people on the forum and learn about their experiences and coping mechanisms you will see you are not alone. I sent you a PM regarding some things I have found helpful. Check the Watch and Wait threads as they provide a wealth of advice and information.

Cheers,

M.A.

KristenWS:
I received your note MA, responded and can't thank you enough. 

As I mentioned, I think I am past denial but am in the bit of the pity (why me, why did this happen) phase.  Also, blown away by the fact that it hits so suddenly, is so life altering and there is no cure, which has really tapped into me being very sad. 

Your notes have given me hope and I will continue to participate in this lovely forum.

Thanks so very much!

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