I'm not sure about posting this. I've become aware of myself changing over the last 3 weeks since my tinnitus worsened. I have depression and have increased under medical supervision to 60mg fluoxetine as my suicidal ideation was bothersome and I'm experiencing lack of energy and ability to do much. I'm walking someone else's dogs while they are away which is getting me out. Every little thing depletes my energy. I spend a lot of time in bed as this is where I feel safe and I can sleep if I need to. There have been a lot of changes in my life recently and I've worked hard on taking care of myself. I beginning my fourth week of sick leave from work. I'm a carer. I guess I'm really looking for confirmation that I'm doing the right thing by doing very little and that my energy will return by degrees. I have exercises I do every other day and make a routine which I sometimes stick to. I'm feeling as though I have signs of dementia which is very worrying. Sorry to spill, but I think it helps to write it down and send. May you all have a lovely day and your tinnitus is bearable if possible.
Changed mood. Isolation.: I'm not sure about... - Tinnitus UK
Changed mood. Isolation.
Hi, I have had tinnitus since I was a teenager but was able to ignore it, a couple of years ago postpartum it was the worst and kept me awake and stressed and lasted around 9 months. I was lucky that there was a clinical trial where they were offering therapy with an NHS specialist. I joined as a past resort didn't expect it to help but it really did. Again my GP did not refer or recommend I just came across it online and joined. It was the best thing I did and I feel much better I would say like 70% Not sure if you've been offered a referral of the sort but it may be helpful x
All the best, Em
Hi. How awful to have had T since being a teenager and then for it to worsen post parturition, as if you didn't have enough to deal with already! I'm glad you feel 70% better after the therapy. I have been referred for hearing therapy so this may be what you had. I don't know how long til I get it but I'm hoping it'll help. Have a great day 🤗
can i ask was this CBT ?
Hi SeashellSara I’m new to tinnitus, like you musical, it seems a shade quieter or maybe I’m not noticing it so much, or a bit of both. At the beginning I was unwell too for another matter, and like you I had no energy or appetite. You are doing the right thing by listening to your body, do go out for a walk as well, as it helps, perhaps take a vitamin & mineral supplement, and the medication prescribed. All the best x
Thanks. Yes I do take a supplement also. I'm glad yours is quieter at the moment. I'm normally a giver, as I can't do this i.e. at work I'm a carer or socially as I'm feeling so self obsessed I can't socialise, I feel I've lost my purpose and have turned into a miserable so and so.... I've started learning to lipread and picking up some sign language. I hope to volunteer with RNID but that doesn't pay the bills.....
whilst it’s right to listen to your body, and you probably feel “safe” in bed, it’s a very good thing that your dog-walking is taking you out of the house. Walking - especially with trees and grass and water - is so good for your general physical,and indeed spiritual and mental health.
And of course work itself is good for you, as it forces you to meet and talk with others.
I’ve a feeling that CBT (cognitive behaviour therapy, look it up if you are not familiar) might help you.
Thanks. My latest block of counselling is finally starting next week. Very much needed. The walk was beautiful.
Do you mask your tinnitus with headphones and radio? I don't do it all of the time but its my 'reach for' when I need a break from the thing. If you're on the go, mobiles have FM radio built in, and there's an internet radio app 'Radio UK' but the latter does tend to wither your battery charge. Ear pieces for mobile though. Not as good.
My tinnitus has been going out of its way today to make sure I know its around to the point of distraction, so its TV and headphones shortly. That's me at my best, getting one over on it.
Thank you. You have reminded me I need to get headphones rather than earphones. My hearing aid for streaming sounds makes my ear itch. I'm have a hypoallergenic one sent which may help but that just for my left ear as that is the one with SSNHL. I'll research headphones as they won't make my ears itch.
I find that anything other than headphones 'send' the noise into the ear. With headphones, it pools in the cups and you pick it up passively. Quite convinced of that.
Regarding isolation, I get that from being a retired single man. Never bothered me during my working years. Was glad to get away from it all at the end of the day. However, I now experience companionship in a way from the better radio presenters in their daily slots. I can recommend Boom radio. Modern music is much of an awful self indulgent misery from the so called young performers around. Not sure if I prefer listening to them or the tinnitus, but thankfully no longer need to make that unpleasant choice with Boom around.
Thanks for your reply again. Do you have any recommendations as regards headphones? I'm looking forward to listening to Boom. The radio sounds like Godsend. I used to listen to it between visits when working. I don't have sounds on in the house so as not to bother my lodgers but headphones could definitely be the answer.
If you click on my username you'll see a post from me 'Covering over Tinnitus with wireless headphones'
Hi seashellSaraAfter reading your post I wanted to share with you something that I have found very helpful. I started intermittent fasting 11 days ago . 16:8 . I use an app called simple . It has really helped my fatigue. Unfortunately it has done nothing to stop the incessant ringing in my right ear but what it has done is give me energy to continue to want to live life . Another thing that has given me tremendous relief is a quote that i repeat to myself often .
" nobody is going to save you. Save yourself spit on your hands and hoist the black flag. No quarter"
Keep pushing on girl
warmest regards
Aesop
Thank you. I'll look into that. Sounds great. Shame it doesn't help.the T but if it gives more energy to cope with it's defo worth a go.
Please educate yourself about intermittent fast before you start it. There are several dangers concerned with it, especially long term.
Hello SeashellSara,
Firstly, I love the name that you picked.
You are doing the correct standard actions to manage your condition .
HAs, therapy and meditation, plus doing something like getting out to walk the dog.
That’s all very positive.
It sounds like you are going through a tough spot at the moment and I think reading your message that you need to realise how far you have come and be kind to yourself. Working in the care profession, you will no doubt give a lot of yourself to the people who you help. That is both rewarding and draining. Realising your needs can be tricky when putting others first.
Absolutely you are doing the right thing by reaching out to this community. There are so many wise and fantastic people here who want to help.
Both T and D are conditions with no real external signs so others around you cannot see your pain and discomfort. An arm in a sling is visible and people take account of it but these have no outside signs. That can make a person lonely and feel isolated. Frustrated that people cannot understand their pain. It took me a long time to be honest with people and say today my T is worse or better. Of course many forms of T stay the same and it’s how our brains interpret these on each day.
For example my T was quite ‘normal’ for me before I started to write this. In the process of thinking about my T to jot some words down, my perception of my T is that it’s now much higher. I know it’s the same and I’m just thinking about it. It’s a circle we all loop through. After I’ve sent this I’ll put my phone down and do something positive and just try to focus on enjoying that activity. It doesn’t always work but I’m more successful doing something that not. I’m certain not trained or a councillor, just someone that sincerely sympathises and to a small extent, understands what you are going through with T and D.
I’ve been prescribed Sertraline which seems to have helped with me with the intrusive thoughts even if there are some unexpected side effects! I was reading about the differences between Prozac (Fluoxetine) vs. Zoloft (Sertraline) to see if swapping could help but I’m not medically trained to really understand the differences.
Try to think what do you need and what would make you happy and that is easier said than done with T and D.
Very best
G
Thanks G for your very thoughtful reply. It means a lot. I hope your T has reduced since posting this. You are right about the carer world. I also have 2 children who have additional needs ( now in their 30's!). I think my body and brain has just made me stop for a while. I'm uncertain about the future but it's early days. Thanks again 🙏
Hello Seashellsara, I’m 72 and read your post and can sympathise wholeheartedly with what you’ve written. My beloved husband died of cancer in 94 we only had 7 yrs together and we had a daughter shes now 35 she lives miles away too. I can remember getting tinnitus after he passed away and the stresses of bringing up my daughter on my own but missing so much my rock and wonderful husband.
We returned to the UK from Spain and we got on with schooling, working etc still struggling with tinnitus badly. I tried recently the new type hearing aids for T but they didn’t work. Ive been able to be in charge of the T not letting IT take me over which really helps. However last month my eldest daughter age 44 found she has breast cancer and starting chemotherapy June 5th but prefers to go alone to have it. This broke my heart. I live alone several hours drive away and the tinnitus is so much louder again my mood is so low that I too stay in bed apart from Pilates 3 times a week on zoom. No single friends nearby to pop in to share a coffee and chew the fat. Married friends “don’t get” single loneliness at all.
You don’t mention living alone but it reads you do. I was taking propranolol but didn’t find them helpful at all and sertraline too. I’m finding releasing my thoughts quite cathartic but as soon as its written boom back to low mood again. I’ve been there for many friends in the past but where are they when I need some comfort they must know Im hurting so much.
Being a carer is a hard job and you must love doing it. Can you pinpoint if it was the job that brought you down or other things? Im retired and had mood-swings all my life thro various disastrous events in my life so Ive always had to rally but I seem to have gone into my deepest depression with my daughters cancer diagnosis.
I really hope you can find the strength to rise above this episode in your life as Im trying to. Tinnitus just adds to the crisis but try not to let it take further hold. I wish you every success in dealing with your situation as Im going to have to. Xxx
Flicke, I’m so sorry about your daughter. I too had breast cancer, with total mastectomy, radiotherapy and chemotherapy. And here I am ten years later happy and well! So don’t regard your daughter’s diagnosis as a death sentence - it isn’t! I’ve had T for most of my life but it rarely bothers me so I’m grateful for this.
Thank you happyrosie your reply gives me hope, my concern is that the lumpectomy she had, the cancer was in a lymph node in her armpit which was removed, my worry is has it traveled. Its made my tinnitus so very loud, like you it very rarely bothers me until now. Funny thing I don’t know anybody with tinnitus but its great to talk here.
I'm so sorry to hear of your loss of your dear husband and concern for your daughter with cancer. I hope the treatment is successful. It must be awful feeling so low and being far from her. Yes I'm single, I have 2 lodgers. I have 2 sons in their early 30's, both with additional needs and who I love dearly. I'm lucky to have friends around but am isolating myself as I'm no fun to be with. I know I shouldn't worry about being a downer but I have had depression my whole life on and off and am fed up with putting upon people and them needing to make allowances for me. I'm hoping some Sacrocranial therapy and counselling will help, both starting this week.
I think it is everything building over the last ten years that has brought me here.
Are you able to access any support from the hospital? At our hospital we have the Mustard Seed for people of loved ones with cancer, which I'm told is very good. There may be a helpline you can call. Don't forget Samaritans are there not just for people contemplating suicide 116 123.
I hope you find the strength too. Its a shock to the system.
Keep in touch.
Hi Sara, i think I know what you’re going through as my t has worsened in the last few years, as I discovered that the pills stop working eventually! I too was on Fluoxetine (Prozac) and after my t first started this drug really helped!! But then started to wear off after a few years, I’ve since tried all sorts of other pills and gone back kn them inbetween to see if might work again but alas no, ironicallly I’m back round on them again but taking them with Quetiapine too (another pill form) as apparently they augment and so the quetiapine could help to boost the fluoxetine? But am still waiting ? I too consider suicide a lot! It’s bloody awful isn’t it? It shouldn’t be like this as all we’re doing is trying to treat depression and anxiety as there’s no bloody drug or proper treatment to help tackle tinnitus! Pisses me off as t gets no air time and you know stuff like MND, cancer and dementia etc is top of the list to get sorted first!
Mac, there are so many maladies that have no cure, or where only a little help can be given by the medical profession. Arthritis and multiple sclerosis come to mind. Tinnitus doesn’t even seem to be a disease, just an inappropriate reaction of the brain. There are so many ways to help deal with tinnitus, though not everyone is helped by treatment A they might find treatment B or C to be good.
Hi. I'm sorry to hear you are affected by tinnitus in a similar way. I have been exploring Buddhism. I'm hoping it will help with acceptance. If it was just the tinnitus it would be better I think but I feel unwell, dizzy, mild headaches too. I've been referred to ENT, not sure how long I'll be waiting. Also got arthritis pain in shoulders and waiting for hip replacement......growing old ain't for the faint hearted they say, lol. Acceptance and maybe non attachment to the suffering is what I need to focus on. Thanks for listening.
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