coping strategies

[Wons1]

hi all, I finally had my results from my mri confirming I do have a small AN. At least I know what is going on now, but how can something so small have such an effect! I am on watch and wait with another mri in august. My main problem apart from getting my head around something that is never really going to go away, deafness, tinnitus, feeling of fullness, is how to deal with the vertigo/dizziness. I am finding it quite debilitating and find I am so tired when I try to do any thing. I have been referred to physio but who knows when that will be. Does anyone have any tips for coping with it? Thanks for just listening

[flappers]

Hello Wons1!

It’s such a lot to hear your head around and manage, but I promise you it really does get easier, you’ll adapt and somehow it won’t feel as awful as it does right now.

Firstly, making sure you get good service from your audiology team, you may find a hearing aid with a tinnitus masker helps, although it takes time to get used to it. I found it does help. I also took lip reading classes so I felt like I was doing something to help myself. It’s fun and being with other people who get how hard it is losing some hearing is comforting. ( free via adult education in some areas) Most of all though, you need to find a way to nurture yourself and find a way to manage the stress of it all. I highly highly recommend contacting the Brainstrust, they have support groups and one to one help and also brilliant weekly hypnotherapy sessions ( all for AN) which have helped me manage the tinnitus and generally cope with the longer term impact of it all. I have had treatment on mine so they were also great preparing me. They offer advice on fatigue too. I think when you’re first diagnosed it is the most stressful and anxiety provoking time. The symptoms feel amplified and stress certainly does lead to all sorts of other things. For balance issues, vestibular physio is really the best thing, so keep pushing for that referral to come through, and in the meantime focus on breathing, reminding yourself that you are okay, you’ll adapt ( yup, even to that mad screaming in your ear) and will be getting on with your best life. I’ve just come back from a month in Thailand, has the best fun and felt totally great. Unimaginable when I was where you are today…( diagnosed in 2020) . Keep asking questions, and although we each have different stories, you’re not alone, we know exactly how tricky it all feels. 💐

[whitefishbay]

You get used to it. Hearing aids help (despite being designed in the stone age). Try to have your GP get you and apt w audiology. I don't have tinnitus but from what I understand it is better when you are busy and going about your day. I am also on watch & wait. I work in two schools so to be honest I am too busy to think about it. Fatigue for me not too bad (I go to bed by 10 but get up at 5.30). For me this forum is super helpful. We are in it together.

[Pinkrose1]

Hi there, the stress is a lot to deal with, it can feel a lonely, frightening place initially but hopefully it will help knowing we all understand what you are going through and i found it got less stressful as i adapted better to having it. I was more open with others about it and told them i get exhausted quickly and they didn't expect so much of me. I also found i adjusted to the tinnitus better once I accepted it and it didn't seem quite as loud or irritating. I resorted to wearing flat shoes as i was off balance such a lot. I found being tired made my balance worse, it still does now after surgery (2021) so i try to listen to my body and pace myself in what i can do and rest. Wishing you all the best for your MRI in Aug

[JBBC]

I was also recently diagnosed. I have a small AN, but it's causing a lot of symptoms. Especially feeling off balance, like I just got off a boat. I am in the US with private insurance, so it may be a little easier to get services here. Vestibular physical therapy really helps! I have the dizziness and tinnitus too. My balance was really off. But doing the eye exercises, even if it's just holding up my thumb and moving it quickly from side to side and following/focusing with my eyes, 5x a day. The other big thing I did was completely cut out caffeine. No coffee, no decaf, no tea, no chocolate, no stimulants of any sort (diet pills, etc.) It has really helped. Drink lots of water too. And get exercise. The days I take a long walk, I feel much better. I have my next MRI in late April and the AN specialist will then recommend another MRI in 6 months or possibly radiation. I want to do the least invasive route possible. Good luck and stay positive! : )