Going crazy

[MrsLifechange]

Hello I'm new here and this is the first time I have posted seeking support. I was diagnosed 18 months ago with auto immune inner ear disease AIED as an extra intestinal manifestation of Crohn's disease. I have hearing loss in one ear and deafening tinnitus in both ears. I was started on Humira last week for the crohns but there is some small evidence that it can help with extra intestinal manifestations. I had to give up my job last year and my life has shrunk to the 4 walls. The tinnitus is unbearable, dizziness, aural fullness and ear pain is awful. I use tinnitus maskers along with endless medication but nothing helps. Any advice would be gratefully received. Thank you

[markclay2]

I sympathise as I have been there myself in some very dark places. The one thing that kept me sane in the darkest night was Facebook as I had a very long conversation with someone on a tinnitus support group on Facebook. There are a number of tinnitus support groups, join as many as you can, and when things are bad, you can reach out to the world for support. Be strong, don’t give up on life, or it will give up on you.

[MrsLifechange in reply to markclay2]

Hello Mark thank you for your kind reply. Yes dark days are many at the moment. I don't have Facebook having resisted it for years but maybe need to change that! Your last sentence is so true.

[Angela-H]

Hi MrsLife and welcome to this forum. I joined this friendly forum over 2 years ago when T came to me likea bolt out of the blue. Isn't it amazing/shocking/awful that our digestive health is so entwined with our immune system and brain. So much that the scientists have discovered yet no hope for tinnitus sufferers. From being an extrovert who was mostly out and about with folk, I became confined to my four walls.

Now for the hopeful bit - from reading the posts of fellow folk on this forum I realised that I wasn't alone in my struggle with the loud noises and incomprehensible pain in my head. I read through all the helpful posts to help me understand and took the advice. I saw that gradually, over time, people did become used to their tinnitus and the brain learns to ignore it. It isn't easy but it does get better. I have days when it bothers me but I know it will settle down again.

A good night of sleep is essential and I was firstly given zopiclone for the first few weeks. I bought a sound oasis machine from the BTA (recommend you look at their website) which I still have on rainfall every night to help sleep. I was prescribed the anti anxiety drug mirtazapine which I took for 12 months.

I was given a hearing aid for slight loss on one ear and a white noise masker for the other. I now wear only the hearing aid, which definitely lessens the T.

I feel "normal" most days, although my social life is not at all the same as I find too much background noise and too many conversations too much and I start to inwardly panic, which makes my brain feel dizzy and hence I worry that it may worsen my T.

If I feel that it is going to be a bad day, the worse thing I can do is stay indoors. I am retired, so I can just go for a walk to the shops which is a good distraction. Now that the cooler autumn days are here we must remember to keep our ears warm. Also have to remember the ear plugs when I go out in case the background noise is too much.

Hope you feel able to read through the advice on here, particularly michaelee whose posts are so helpful.

Love and best wishes, Angela xx

[MrsLifechange]

Hello Angela thank you for your very kind and helpful reply. Yes you can see why they say the gut is the second brain, it has such a profound effect on the body physically and mentally. I need to try and hang onto the knowledge that I should habituate to the tinnitus but it is SO hard. By the end of the day I just want to cut my head off I am so desperate. Sleep is very difficult I am taking zopiclone which does work sometimes but not if I'm wired! I have a hearing aid and like you a tinnitus masked built in for my hearing loss ear and a masker for the other. I have no social life as just been too ill for such a long time and now I am so anxious going anywhere for both the IBD issues and hearing/sound issues. I do try and walk and get outside every day and if I'm feeling up to it I swim too. Thank you again.

[Angela-H]

You're welcome. Stay with us on this forum for support. Sending my positive thoughts and hope you sleep ok. Love, Angela xx

[ckingswell]

Hi,

I'm so sorry to hear you're in such a bad place right now. I'm new to the forum too but have found some great advice by working through old threads..it's a good place to start.

I have crohns too, I've never considered that the tinnitus could be related! I hope Humira works well for you. I was on it for a year or so and it did help a little. My crohns is finally well controlled, after years of mess and surgery...so it can happen!

Do you have support at home/locally? People that can come and keep you company? I know how lonely it can be when your illness confines you to the home. Fingers crossed you will get some improvement soon.

Happy to chat anytime x

Cassie.

[MrsLifechange in reply to ckingswell]

Hello Cassie thank you for your reply and great to hear that your crohns is under control. I have auto immune inner ear disease which is sadly very rare and being an academic until I had to give it up last year so have spent so much time researching. I present my consultants with the evidence I have found . The past 3 years have been hell and when having to give up my job I have lost my identity. All my friends work and really have very few people I see partly due to just not feeling well enough and partly feeling so withdrawn which is just not who I am! T is absolutely hideous and I do feel as if it's driving me mad. It has been good to read other report that it can get to a point where it is manageable. Roll on that day! Best wishes

[Angela-H]

Hi again MrsLifechange, Cassie is quite right, if you look through the posts on this forum you will find that we are all in it together - as ade-the-pade says "losing, surviving or winning" on a day to day basis. Time is all we have in habituating to our tinnitus; although I appreciate that you have those other health problems which would make life a little more troublesome by themselves. Life can certainly throw some surprising life-changes at us.

The sound oasis machine is a godsend in helping to relax me whilst getting to sleep - I keep it on all night, every night. And, at home during the day, I surround myself with background noise which is set at a level lower than my tinnitus, meaning that my hearing has to search out the background sounds and this helps me to ignore the tinnitus.

Since I found this forum, I have noticed what has helped others and, fingers crossed, I think I have habituated (most days). A positive state of mind is essential in winning against our T. Love and best wishes, Angela xx