Just wondering......

[Lindsay6]

Hi all. Just wondering if anyone has any experience or any comments about the following : my tinnitus is now so ferocious in volume , pitch and intensity it is exhausting to cope with . I am not anxious about it any more than I was anxious when I had a migraine , or toothache or a cold. It is the pain and physical impact it is having. It has been suggested ( by osteopath and a counsellor ) that perhaps I could try some medication for the nerves - e.g amitriptyline , nortriptyline or duloxetine. I was prescribed very low dosage of amitriptyline four years ago when my tinnitus started , but didn't persevere more than a few days because of the side effects . I hate taking medication , but am now at a stage when my body has a mind of its own , some days I am almost falling over with the pain and tiredness and I need some help , I also believe it can not get any worse . Thanks in advance . Lindsay

[Hidden]

Hi Linsey,

I have been on Amitryptaline for 10 years due to a back problem and managed ween my self off them.

Last year my tinnitus went really bad and developed head tinnitus and deep drone in my ears on top of my high pitch in my ears and could not cope and needed time off work and was not sleeping.

I was put on Nortryptaline and increased to 50mg.

The side effects are a lot less than its cousin Amitryptaline and more tolerated.

It stopped my head tinnitus and stopped my deep drone in my ears and took the edge off my high pitch too! Also sleeping great and really calm and relaxed most of the time.

The side effects I had was just a little tired for 2-3 days but could still function.

Nortryptaline and Amitryptaline can help reduce tinnitus for some people.

I totally understand how you are feeling and will support you all I can.

Have a chat with your doctor and see what he thinks ....lots of love glynis

[Lindsay6 in reply to Hidden]

Thanks , I think my GP did suggest nortrypaline then too , so will discuss. Thank you for sharing - I have got a bit fed up tbh of being told there is no ' pain' or other impacts of tinnitus (.including by many who have it mildly ). Just wish we all didn't have . But thanks again x

[Hidden in reply to Hidden]

hi I have tinnitus and it s not going away I just plod on it make me mood swing s and I just need to get out and walk or ride

[Hidden]

The following medications are used in treatment of tinnitus:

lorazepam or clonazepam (in low doses). ...

Amitriptyline or nortriptyline (again in low doses). ...lots of love glynis

[Lindsay6 in reply to Hidden]

Thanks - will do bit of research and ask GP on Friday. Am seeing audiologist tomorrow , nice person but it's more of a chit chat tbh x

[Andy0708]

Hi Lindsay

Sometimes we need some help in dealing with this. I take mirtazapine at the moment particularly for sleeping. It's a hard battle we all face but you aren't alone.

The details Glynis has provided will definitely help you to decide what possibly to take along with talking to your GP. Maybe your audiologist can advise on something also ?

Hope you feel better soon.

[Lindsay6 in reply to Andy0708]

Thanks Andy , this reaching out for help is new to me having been the superwoman helper at home at at work all my life. It really is invaluable to have the understanding and suggestions of others. My audiologist was nice and said yes , tinnirus can get this bad, even if mine started much more mildly. And yes nerve pains can 'transfer to ' other parts of the body. She said several of her patients do have amitriptaline , and it would help me to take the edge off the ferocity . Some take it even8 g to aid sleep, some in.the morning. Not one for tablets ( like doing it myself ) but now I am just doing my freelance charity work whilst I try and get bit better, it's the ideal time to try. Thanks again 😊

[Angela-H]

Hi Lindsay, sorry you're not having a break from your T. Mine was horrendous when it started. I was put on Mirtazapine 30mg to calm my anxiety and zopliclone for sleep. I would have done/taken anything to get rid of the beast - I would even have eaten meat. And have been vegetarian for 28 years! Anyway, after a few months it settled and quietened and now I don't take any meds at all. But, I do know that if I again find that I can't cope with it I will be back to the GP for meds! Ps my T was very very painful at the beginning - I couldn't wash my hair in the shower and many times had to put an ice pack on my head to cool the pain. I also had to sleep sitting up in bed for weeks. The pain was in my back and legs too. What a monster T can be. Give me medication to help any time! Get better soon Lindsay, love, Angela xx

[Lindsay6 in reply to Angela-H]

Thank you Angela for sharing. Many times I have felt unbelieved about the non noise aspect , including by Tinnitus ' people and services '. I feel ' armed ' with knowledge for my GP appointment - but will be a nice use of them as my GP is nice !

[Angela-H]

I had the same reaction from people. I have never experienced such intense pain as I did then. Childbirth was a breeze compared with the tinnitus pain. Love, Angela xx

[Lindsay6 in reply to Angela-H]

Nearest I have come to childbirth is watching One Born Any Minute. Havery just had good audiologist appointment - she totally got it ( she has tinnitus which helps ) . Agrees some medication to ease the ferocity would be good - amitriptaline is what most her patients use but will discuss with GP. Found a reservoir across the road from the hospital so am sat sunbathing before the 9 mile journey back. Hope it's sunny with you too 😎

[Angela-H]

Hi Lindsay, good that your audiologist was understanding and I hope you get some positivity from your GP. Yes, the sun came out this afternoon, but it's cloudy again. Good wishes, Angela xx

[Lindsay6]

Hi . Thanks again for all your support , especially as i am finding it hard to mange the fact I feel happy and postitive ( having left the awful job) just the tionnitus still gets worse. I saw my GP yesterday , i asked for nortripylene , but she said i had to have amitrpylene because the pharmacists say that has to be tried first ( two things - I have tried it before , with side affects but to be honest it wasn't for very long ; secondly as a friend said ' what has it to do with pharmacists ?). I am still wavering about putting in the prescription......( bit like a soap , sorry )

[Angela-H in reply to Lindsay6]

Hi Lindsay, will the side effects of amitriptyline be worse than your T? If I were you, I would give the meds a try. Side effects usually lessen and go as the body gets used to the meds. Love, Angela xx

[Lindsay6 in reply to Angela-H]

Thanks Angela. I have indeed decided to give them a try - deciding surely the T can't get worse as it's at unbearable now. I took 5 mg on Sunday and 2.5 mg last night. Have had good sleeps and so we will see ifrom longer term it can take the edge off it. Thanks for caring 😊

[Angela-H in reply to Lindsay6]

Hope it works for you Lindsay. My T was equally unbearable when I first got it, but by taking the meds and all the other BTA advice I have habituated. Best wishes and love, Angela xx

[Lindsay6 in reply to Angela-H]

I will persevere , with this positive comment helping too. This afternoon I am seeing my friend and her 2 and 4 year old very energetic boys this afternoon which will be fun 😁

[Ruud1boy in reply to Lindsay6]

Hi Lindsay,

Just wondered if you had any update on how you're getting on with the Amitriptyline?

I've just been given a prescription from the docs for the same - I went to him looking for help in calming me down when I'm having a bad T day and this was what he's suggested. Starting low (10mg), he says he's happy for me to go up to 4x that if needs be, to be taken as & when my bad days hit me - but having just spent no more than half an hour reading up on it, I'm not sure I want to take them!! The never ending list of possible side effects sound terrifying.

[Lindsay6 in reply to Ruud1boy]

Hi. I can only share my own experiences, others will be different. I am afraid I didn't persevere, taking just 5 mg for fiver days. I was hoping they would help reduce the ferocity and intensity of the tinnitus , as I don't feel particularly anxious or depressed . Unfortunately they seemed to ' up the ante ' of the hiss' and it's not come down . People may say the amount was too small to make any difference, but I am a wee person. I have gathered though that it's not the easiest to take then not take , like you do with paracetamol . Perhaps I should have persevered , but I am not good when I feel worse than I did. I do have friends who have found them useful for pain , others in my tinnitus group who found them not good . This may not help , sorry. My personal feeling ( and it just me ) is that I want to try without medication because my body's nervous system seems a bit ' shot ' but others , including so easy great people on this forum who have been helped. All the best and let me know what you decide. 😊

[Hidden]

hi I'm not sure were you live but if you live in stoke on trent you could come along to our support group which will give you advice and talk with people with tinnitus

[Lindsay6]

Thank you. That's kind - I live in Nottingham and am in the Chesterfield group . It is a great group - although noone has tinnitus as bad with the impact on the body , so glad that groups and forum exists ☺

[Angela-H]

Hi Lindsay, I was prescribed Mirtazapine 15mg which was then upped to 30mg taken an hour before bedtime. I was taking them for 12 months before being weaned off. The only side effect was weight gain, which as I had lost almost 2 stones from not being able to eat anything but mouse portions of food after the onset of T, was a positive!

My T did calm down and I would have no hesitation in taking them again I would add that I had never taken any such meds before T.

Maybe some herbal mood lifters would help you? St Johns Wort? Love, Angela xx

[Lindsay6 in reply to Angela-H]

Morning. Thanks . I am sat on the flooright in a corner of the lounge feeling a bit beseiced! School ' at end of garden' has had bulldozers for months and months , all weekday and now Saturdays . Next door but one starting building work so lorry and equipment beige delivered. I had positive day yesterday but have woken with it through the roof and this is when I wonder if there will ever be a chance of it even levelling out. Sorry , I just need to offload . I guess I will go out for a walk - bI'll dozens stay til past 4 pm so I may end up in Aberdeen ☺

[Angela-H in reply to Lindsay6]

Oh no Lindsay. I know how you feel. A few houses away are having building work and when the angle grinder is out I have to close all windows and turn off hearing aid. Seems to me that we T people have all the odds stacked against us. It's a bit chilly out there so keep your ears warm when you go out. Sending hugs to you , Angela xx

[Lindsay6 in reply to Angela-H]

Thank you Angela. Sorry I am being mardy , sorry the bubbly, dynamic and fun loving Lindsay seems to have gone somewhere. Am sat in my car with cup of tea from a flask listening to local Radio - one has to do what one has to do 😀xx

[Angela-H in reply to Lindsay6]

No need to say sorry Lindsay. We all understand. I became so introverted that I did nothing for a year. I still prefer to be alone at home, whereas before I hardly stayed in the house - went everywhere with everyone. I miss my old life too 😒 It is only for others that I venture outside my home town. We're all in it together xx

[Elv28 in reply to Lindsay6]

Hi Lindsay6 I suffer with tinnitus as does my husband. I was so sad to read how terribly it affects you. Mine makes my anxiety soar through the roof at times . My moods are greatly affected by it it's like a vicious circle the worse my anxiety the worse my Tinnitus and visa versa I hope you find some peace soon my dear. At the moment mine is on screaming level due to flying to Edinburgh and back over the weekend hope it climbs down soon.