A couple of outstanding q’s I have about T and H, if anyone can help answer them?

[MAC0811]

1. Does anybody else feel like they’ve exhausted all anti-depressants, SSRI’s, etc as what once worked now doesn’t? And where do you go from there?

2. I’ve had T and H since 2009, and after about 3 mths I habituated but with the aid of being on Prozac (Fluoxetine), however roll forward 4-5 years later and sadly these pills wore off? I have since then never really found “a sliver bullet like pill like Prozac” and have never habituated since - altho have tried all the other so called treatments like; cbt, act, mindfulness, etc you name it? Anyone else experiencing or experienced this same frustration??

3. I struggle to “measure” if my tinnitus has got worse - so I press the fleshy bits into the ear holes to cut out all outside noise and listen to it but find it hard to determine if louder or not? Plus has it physically got louder or is it the perception?? Anybody else do this? And has anybody genuinely believed that they can measure if it’s got worse or better? As I’m wondering that if I can’t tell - then maybe it’s not got any worse? But it’s so bloody hard to tell? I wish you could have a scan or get a print out that could tell you!? lol.

3. Currently taking Prozac again as gone full circle so probably doing nothing at all, so wondering if I’m just running on empty here? And as to why things have got so bad? As Hyperacusis is as bad as ever now too! Find sound tolerance has got a lot worse? And so wonder will this improve? Plus I wonder if I have reactive tinnitus too?? Worried as read a few horror stories on here about some who have T and H and it’s got “really” bad to the point where they can hardly enjoy any life now at all!? See posts by “Thorian”

4. I am due to meet a health professional in a few more weeks and will discuss some other pill?? But as I alluded too earlier I feel like I’ve exhausted everything now?

5. I’m just staggered daily that this what can be for many a quite awful condition hasn’t received enough attention and funding to have at the “very least” a pill or an injection or perhaps an invasive procedure by now that will positively affect the “cause” and not the “effect”?

6. I had an NHS meeting with an ENT Consultant just before Xmas and laid it all down to her about my thoughts, bloody everything! And she conceded that she only wishes she could go f me a pill or something that would actually help with the cause and went on to say - yes we are miles behind the curve! And the chances of having this condition properly treated or indeed cured are very low!

7. Has anybody had any success with hypnosis / hypnotherapy?

8. Has anybody had any success with St John’s Wort?

9. Has anybody found dropping caffeine has helped?? And if so how long did it take before you noticed a difference of indeed you did?

10. Has anyone had any success with taking CBD oil or gummies?

11. (For this next one - I realise I’m scraping the barrel, lol!!) But has anyone heard or read of any “genuine and quite possibly encouraging” “treatment” or/and “cure” that is currently being looked into??

Thanks for reading and answering - in advance! If indeed you have. Any answers or and other comments and thoughts are most welcome.

[Happyrosie]

MAC0811 I don’t think what I’m going to write here is going to please you but here goes.

I’m in no way a medical person but am interested in the world of biology. There are many many diseases of the human that have no current cure. Tinnitus is just one.

There is one form of arthritis which can be debilitating and usually develops in young adults, and it takes an average of, I think, ten years to diagnose. And there is no cure. And there are many other forms of arthritis. No cure, and millions are spent on research.

Or blindness. Many forms, there are ways to slow the progress of some. I don’t think there is a cure.

Or multiple sclerosis. Incurable. I have a close friend who was diagnosed with one form of this (there are several) some twenty years ago and, with no treatment or any intervention, he has gradually become cured - his consultant is pretty amazed. But he, my friend not his consultant, is going blind.

I think with no evidence that there could be several causes of tinnitus and possibly none. In my case there is no reason I developed it in my teens, I accepted it as one of the many things that young women have to endure, and here I am sixty years later with it. It’s part of me. If I had the choice between my current form of arthritis and tinnitus, I would instantly ask that arthritis should go away and not tinnitus.

In answer to the several queries you raised, these have all come up over the years. Were there a cure, or definite mitigation, you’d have heard it.

Again with no evidence I believe that forum users have found ways to deal with this condition and DONT come back here because they have no wish to even think about tinnitus again, because when they think about it, it pops up.

I’m sorry if what I’ve said isn’t very encouraging to you. What I’ve written is to try and show that your evident anger and distress might be redirected into relaxation techniques for example.

[MAC0811 in reply to Happyrosie]

I’m not angry Happyrosie, I am frustrated and scared of what the future holds for me.

[vincentchan in reply to Happyrosie]

Dont have to be upset its just a matter of thinking From cbt tinnitus bookJust think B instead of A

244

Living Well with Tinnitus

1

A.

Tinnitus makes me feel tired, as I cannot sleep well at night. Tinnitus is a terrible disease with no cure!

B

I am lying down and con despite hearing tinnitus. This is the second best compared to a deep sleep. Resting helps to energise me. Even if there is no cure, I can still live well with tinnitus

2

A Tinnitus affects my sleep and concentration. Hence it reduces my efficiency. I can no longer be in control at my workplace.

B

I can concentrate on my tasles most of the time. I can do whatever I need to do despite the difficulties caused by tinnitus. This makes me feel strong.

3

A.Tinnitus invades every aspect of my life and makes me feel useless.

B.

Tinnitus is present most of the time and is a nuisance Regardless of tinnitus, I can do whatever I need to do. This makes me feel useful.

4. A I make lots of mistake coz of my t

B.

I can do most things as well and accurately as I used to before I had tinnitus. It may take me slightly longer to complete my tasks. It is OK to double check my work for accuracy. My performance is intact despite tinnitus.

5

A.

Tinnitus is like a fog that affects my performance.

B.

I can see, hear and think even when I hear tinnitus Loud and clearly.

[rabbits65]

Hello. MAC , I don’t take any stupid medication for mine. I just take my two poodles out for walks and enjoy the fresh (cold now) air the rustling of the trees etc, definitely cut out caffeine if you can, you can get de caff Tea and coffee.

[Graham-E in reply to rabbits65]

That sounds like a fantastic way to distract and get out and about with your two dogs. Great option.

[rabbits65 in reply to Graham-E]

Yes my dogs are my best and only medicine. Nothing else beats T. 🤣🤣🤣

[MAC0811 in reply to rabbits65]

Yes unfortunately for some of us we have to take ‘stupid medication’ as you call it, as what we have is that severe, unfortunately walking a dog and being outside with nature isn’t anywhere near enough for me, as of course I do do that when I’m feeling well enough ! Your tinnitus is clearly at a more acceptable level for you to be able to cope, as mine was once too.

[Jimbob7]

I'm going to reply fully a little later on (it's early here) but I'll go straight in to No. 8 there and state:

DO NOT TAKE ST JOHN'S WORT WITH ANY SSRI Anti-Depression medication.

Doing so will lead to Serotonin Syndrome which is life-threatening.

Really bad things will happen up to seizure and beyond.

[MAC0811 in reply to Jimbob7]

Thanks Jimbob.

[Caradoc1a]

I developed tinnitus last year at the same time I became hypothyroid due to having radioiodine for hyperthyroid - and also became deficient in B12. Blood tests showed a reduction of almost 50% in 12 months. As the B12 deficiency developed my tinnitus developed as well. I'm now self injecting B12 and I think tinnitus is fading just a little. So get your B12 and thyroid checked as it is a symptom of both.

[MAC0811 in reply to Caradoc1a]

Thanks for your reply, yes have tried B12 before but maybe didn’t give it long enough??

[Caradoc1a in reply to MAC0811]

Have had your serum b12 checked? Mine was 334 which is mid range yet NICE guidelines say it is probably deficiency if also have symptoms. I then developed many other symptoms, tinnitus was an early symptom. Similarly, have got any other thyroid symptoms?

[MAC0811 in reply to Caradoc1a]

I think I’ll arrange for a B12 test to see if it reveals any deficiencies?

[Sassyjax1]

Hello. I’m sorry you are again struggling with T &H. It’s such a difficult thing to navigate. Firstly - it’s not actually a condition in itself. Secondly, because it can be so changeable and we often don’t know why. I’m over 18 months in and struggle with changing tinnitus and I also experienced hyperacusis. Any so-called “spikes” I had actually resulted in a permanent change to my T. I recently spoke with a Psyche from UCLH who says he doesn’t believe T is caused by stress, but that it’s “some sort of damage”. (I don’t have hearing loss, but I have T, so I don’t agree entirely with what he says). I then spoke to a friend who has T, again with no hearing loss. Hers is also idiopathic & she also has vertigo on occasion. She says she rejected T from the moment she got it. “There’s bigger things to worry about. It is a non-issue for me”. She thought her T had gone & only realised she still had it after putting ear plugs in her ears to try to sleep one night. When I asked if that distressed her, she said it didn’t. Full habituation. When I asked how loud hers is she said: “I don’t know, I refuse to give it my attention”. She said it got noticeably worse recently went she started on Mirtazapine, so she stopped taking it with the advice from her GP. Her T returned to what she said was “normal”. I’m personally struggling and continually anxious over my T. I’m thoroughly bored of it. Tired of hearing the incessant changing sounds. I haven’t accepted it yet. It has, however, affected my children’s lives and they are now anxious about T. Something they gave little or no importance too before in their young lives. Now, they immediately mention any transient sounds in their ears. For now, T is something they hear “now & then” or “when I’m feeling unwell mum”. But they are aware of it. That’s my fault. I’m currently only “monitoring” mine at night or when very anxious. It’s suddenly much louder and more intrusive. My diet is good, I don’t have caffeine or alcohol anymore. My sleep is poor because I struggle to get to sleep with T. I’m not googling T. It won’t solve or bring me relief. I don’t even care if there’s no cure for T anymore. Simply because one cap doesn’t fit all. I have heard that it’s possible to re-habituate many times over. I am expecting that this will happen for you too.

[MAC0811 in reply to Sassyjax1]

I think it’s the change in pill routine that’s not helped me either, but there are so many other permutations it’s so hard to tell?? You almost five up on it in the end! And maybe ignoring it like that is the best way I think as think sometimes that this could be a lot lot worse than it is! I am trying to remain hopeful, but yes do get down about it. I think it doesn’t help when you see and hear about others you know going out and about and to loud social occasions that you can longer attend due to noise levels! It’s my youngest sons birthday party this weekend and he’s having it at Chill Factor E (a snow park ski centre) and I can’t attend due to the noise factor there, and it’s things like that which are quite upsetting as I’m missing out on seeing my children growing up. Anyway I try to be positive where I can and hope one day they might find something for this that will properly help!?

[Sassyjax1 in reply to MAC0811]

I totally get what you mean about noise. Especially when there’s children to consider. I nearly have a mini breakdown when I have to go to my daughters’ concerts at a local theatre. I wear ear plugs every time. I live in south London, so it’s crazy-busy on the roads. I’m right near a main hospital & police station. I can cope with it indoors. Still hear the sirens, but I don’t acknowledge the sounds. Outdoors, I have learnt that noise can dissipate quite easily. My ears are not getting damaged. I’m safe. Public transport is only an issue for me on the tube. I wear ear plugs. Please try to go to the party. Get some good ear plugs like musicians wear. Don’t miss out. I’m regretting all the stuff I’ve missed my daughter doing. According to my audiologist, it’s only 0.5% of tinnitus sufferers who are severely impacted in daily life by tinnitus. Please don’t let this be you. I’m grateful for outside sounds. It covers the racket in my head. Try one thing at a time, and you will cope. I know you will.

[MAC0811 in reply to Sassyjax1]

I’m not so sure if I’m in that 0.5%?? As mine is quite bad I reckon? Like I can hear my T when I’m driving, watching the tv, and with the Hyperacusis I struggle when I hear the noises of; foil being crumpled, light switches being switched on and off, some peoples voices (those who are loudish when speak), so????? Not sure where you fit on the curve? And then I’m not so sure if the T is getting louder too? But like I say in earlier post there is no way of telling for sure if it has gone worse or not? And that’s a ball ache just in itself!?

[Sassyjax1 in reply to MAC0811]

I honestly think it does its own thing. I did notice that I habituated to hyperacusis very quickly as it was impossible to carry on being a single parent without exposing myself to sounds. I could even hear my eldest walking on carpet in the next room, Having a shower was just torture for my brain. The first time I drove my car after my first spine op I was in pain from the engine sound. I left the car. Had to. Now I don’t hear the engine unless I look for it & there’s really no need to do that. It’s a focus I can do without. Currently, I am sitting in Nando’s after dropping my eldest son back to uni in Portsmouth. Loud music & people laughing & chatting. I don’t care. I’m with my wonderful children. I realise I will suffer later on when trying to sleep. The last 6 weeks my T has ramped up to a ridiculous level. I’m not googling the reason why. I don’t want the added anxiety of “what if’s” on the mix. It could be my neck/spine stenosis, it could be my blood pressure, It could be stress. I don’t know for sure. I only know my spinal stenosis can’t be cured. I also never had even a hint of T on my life before my first op in late March 23. I woke up to loud helicopter noise. I was devastated beyond belief. Over 1.5 yrs in and CBT, EMDR, TRT. Nothing has brought me habituation. Maybe because I have several different sounds now. I don’t know. I do know that I have met & know so many people who are lucky enough to have only encountered mild T. There’s a wonderful lady on here, who has had loud T since her teenage years and it’s loud, but she is fully habituated. Her mindset towards it unshakeable. I often read back over her replies. Even a few seconds of understanding is better than no understanding at all. Hyperacusis can go into the background much more quickly than T can. I absolutely know this from my own experience. I was terrified when I first had it. I could only hear voices as robotic sounds. It was utter misery. Now! I don’t care for it. It can stay where it is. In the background. It’s not important. You too will get to this point in the near future. My ex partner left me on a hospital bed, brain fluid leaks in process, unable to walk or move even - & screaming tinnitus. Fast forward 18 months & he now has tinnitus himself. He soon knew who to contact when it happened. He got it from having microsuction for impacted wax. His attitude to it is so what? So what? Because it’s mild. He doesn’t hear it all day long. He still goes to gigs all over the place & works in a busy, noisy job. Still, he says “I’d go mad if I had it like you do!” Well, he’s only just started his journey ……

[MAC0811 in reply to Sassyjax1]

You sound like a strong woman, an inspiration!! I hope we both improve!! I’ve had this all said for 15 years now, I’m now 53. And in that time I’ve habituated within the first year and this lasted for a few years and I had the bastard in my hand!! Then I seemed to fall out of habituation I think because the pills (fluoxetine) finally stopped working!? And so ever since then I’ve been fire fighting with it as it’s got worse! And tried all sorts of pills etc, cbt you name it but nothing seems to touch the sides!! But anyway I’m trying to stay positive, but I have to get all this off my chest on here even tho some on here complain thy I’m being “negative”!? 🙄 And my wife really doesn’t want to know / hear what I have to say, she’s not very feeling tbh anyway. Infact think we’re going to separate. I was sorry to hear about your partner deserting you like that. One thing you can def say about Tinnitus is it’s a leveller! And you soon find out who your true friends are and who they’re not! And the same applies to family members too!! How long did you say you’ve had T and H for?!

[Sassyjax1 in reply to MAC0811]

It remarkable how people who haven’t experienced T or H dismiss the trauma the person suffering has as “it’s just a sound”. Even people I know who have only ever experienced mild T come out with some right nonsense. Go back and do all the things you did to habituate the first time round. It’s knocked you for six, but I guarantee it’s all still there - those habituation knacks. I even had 5 sessions with a top TRT therapist from UCLH. He said he’s had clients with the worst T who end up just hearing it & not reacting after years of suffering. I got my T & H on 31/3/23. Two days before my birthday. I had just come out of hospital from emergency neuro surgery for cauda equina syndrome. During the op the surgeon caused a brain fluid leak. I had no idea what that was. I literally woke up 8 days after the op with the weirdest sound sensitivity. It was my birthday & friends had come to visit. All I could hear when they spoke was the sound of Daleks. It was terrifying. Then the T hit. Loud helicopter sounds. I didn’t even experience T before this at all despite being a suffeter of chronic sinus infections. Not even 2 really bad covid infections gave me T. I was terrified. Fast forward 12 weeks & after begging GP & surgeons for help, a second brain fluid leak was discovered and I was rushed back into hospital. The surgeon had failed to do an MRI scan after my first op. If she had, the second leak would have been found, I wasn’t even able to walk. It was truly devastating. Spent 5 days post second op unable to move at all whilst the fluid was drained. 5 days of listening to tinnitus without even being able to occupied to distract from it. Fast forward 3 months later and the H was way, way in the bs ground. My mental health is a whole different story. Diagnosed with PTSD because of the incompetence of one supposedly experienced, high-flying NHS neurosurgeon, She finally did an MRI on my brain before I left hospital the second time & they found no physical cause for the T. As in, no nerve pathways were damaged.

[MAC0811 in reply to Sassyjax1]

Blimey you’ve been through the Mill too!! Well youve not had it long so I’m sure you’ll experience a good habituation soon. Tbh I used no knacks for me to get there as the pill I was on at the time helped (Prozac) as I mentioned in earlier post. So just have to see what happens, I do try not to think about it and distract myself with work etc but it’s that intrusive and like I say the H is awful too. Anyway good luck and let me know how you get on. x

[Sassyjax1 in reply to MAC0811]

The good thing is that you are busy. That helps some. Please let me know how you get on.

[Graham-E]

Last minute change to my reply.

Save yourself from this reply and jump straight to the end and only read the short answer.

😊

————————-

Hi and as there is quite a list I’ll just pick off your first number 3.

“3. I struggle to “measure” if my tinnitus”

Yes I have tried to measure my T in the past. I’ve tried to understand if it’s louder or not.

Generally, when I think about my T it automatically gets louder so I find this almost impossible. I also cannot think I can accurately measure the level of the noise or remember it for comparison. Then I give up trying only to think for the next few hours, wow that’s loud.

So yes I do this and when I realise that is what I’m doing (like a stray unwanted thought) I try to distract away from doing it. The thing is ‘what would I do with that information’ I’ve wondered long and hard many times? The answer is, apart from feeling worse about myself, nothing. It’s not like a level 3 gets no cure where as a level 8 gets the fix now I crossed a threshold somewhere. That sounds harsh but I’ve been up most of the night so please don’t take anything by this reply.

Yes personally it would be good to understand that it’s not getting worse but what could I do if it did?

Distraction seems my best option and absolutely writing this reply while thinking about it being this tired ‘feels’ like my T is far worse. However, I know it’s probably no different than when I picked up my phone but I’m now paying attention to it.

I cannot remember which CBT person I had the pleasure of spending time with said that T can be thought of as being like a petulant child in the room. Demanding attention and never being satisfied.

——————————

Short answer, yes I do this and I’m not sure what good it does but I sometimes still do it.

Take care - G

[MAC0811 in reply to Graham-E]

Thanks Graham, all replies are useful and you gave me some good feedback there.

[Ryesand1 in reply to Graham-E]

Hi. Regarding measuring T. I scale 1 to 10 with 1 being as normal as I have been recently, to 10 being very angry and depressed and feel that I am on the brink of collapse thru fatigue. I also weigh my score against things I can do or things to avoid. For instance - whether I can tolerate or listen to my music / watch TV / engage in group conversation / wish to distance myself from friends family - all will be part of my measurements and marked against each relative score. This works for me but there will be many other ways to measure - if measuring is a good idea. Sometimes, of course, we are emotionally low, so accurate scoring can be a bit hit and miss dependent on tolerance levels.

[Graham-E in reply to Ryesand1]

I feel for you. Having your score shoot up like that is no fun. You are not alone because so many people on here including myself feel for you, truly.

I appreciate that doesn’t really help but sometimes knowing people actually understand you can be meaningful.

I hit a hard patch a couple of weeks ago and said something that I now bitterly regret. The excuse of sorry that wasn’t really me, it was the cause and effect of my T and its associated ‘D’, never seems to be sufficient.

I can explain to people long and hard for all the days I have left and it would still not be enough. People without this cannot understand how intrusive this condition it.

Absolutely do all the good things of changing your scenery, mindfulness, open spaces, (with or without nature!) rest, sleep and above all be kind to yourself.

Give yourself permission to accept that things are cr@p at the moment but will not stay that way. I’m a big fan of something they taught in primary school (not my primary school 🤣, that was the ‘grin and bear it’ age) which is, ‘tomorrow is a new day and a new start’.

Please just take some time for yourself and give yourself permission that you are allowed to be you.

All the best - G

[Ryesand1 in reply to Graham-E]

Graham, thank you for your considerate reply.

[Hel_C]

Personally I would suggest you look at mindfulness and meditation to help your anxiety and depression. Videmala Birch does some amazing mindfulness for health and in the past I have turned to mindfulness for help with pain management. As might hypnotherapy as it can help with the stress that is part of the overwhelm surrounding tinnitus.

You will probably know that Prozac takes a while to work so give it a chance and take advice if you plan to add St John's Wort as it can react with foods and medicines.

Other than my HRT I am not on any other medication and would not look to get anything for tinnitus when it is about management of a long term condition. Self care, rest, massage will help but there is no cure and if you are exhausted why not stop seeking and be kinder to yourself.

[MAC0811 in reply to Hel_C]

Hi Helen, as I’ve has this for 15 yrs I’ve been round the track a few times now and that includes trying many forms of cbt and mindfulness and pills, massages, acupuncture, you name it, along the way. Plus ive been on a variety of anti depressants and for a second even third time in some cases. It just feels like my T and H are just too profound for these things to work? I’m not poo pooing these alternate therapies bur sadly they dont always work for everyone or evidently not for all varieties of tinnitus? But I am trying to be positive and hope I have another idea soon? I’m currently on statins too as my cholesterol is very high and I read once about a girl who had T and high cholesterol and she took statins ad it helped?? So apart from magnesium tablets and Fluoxetine that’s all I’m on atm. Honestly I’d try practically anything if it gave me a noticeable improvement!? lol.

[vincentchan]

According to cbt for tinnitus book good news is that its just distress

Can tinnitus cause headaches or other problems?

Based on clinical observations, there seem to be several sensa- Dons that can be related to or caused by tinnitus distress. They range from various forms of muscle tension to oversensitivity to sound, referred to as hyperacusis.

Tension in the head and face muscles can lead to headaches. A study conducted in Sweden by Dr Lugo and colleagues showed that the prevalence of headaches among people with tinnitus was 26 per cent, and up to 40 per cent for people with severe tinnitus. This is higher than the prevalence in the general population. The headaches may be related to the stress and anxiety caused by tinnitus, or they may be related to a pre-existing problem like migraines. If the former is the case, the CBT methods described here may reduce the incidence and/or severity of headaches. If the latter, a doctor may be able to diagnose the root cause of the headaches or prescribe medi- cation for the migraines.

APD There are tiny muscles attached to the ossicles, the tiny bones yow in the middle ear that connect the eardrum to the cochlea (part mes por of the inner ear), as illustrated in Figure 3. If the muscles con- tract, they stiffen the ossicular chain, leading to a reduction in he pes the transmission of sound from the eardrum to the cochlea This occurs as a natural reflex when we are exposed to an intense sound; it helps to protect the delicate structures inside the cochlea. The muscles relax when the intense sounds stop. However, sometimes the muscles can contract for a long time without any intense sound being present. This can lead to