Feeling Desperate...

[Jaybeee]

@Ed209 hi Ed. Did you ever take ADs? @Samantha R your situation sounds very similar to mine. I awoke with ear fullness and once that had gone, I latched on to a brain sound that I feel might have always been there. But things are a bit of a blur as panic set in right away and my memory of the earliest days are muddled. How long did you leave it before taking mirtazapine.. and r u considering another med now? I am seeing a gp again today, but my fear of meds is only because my noise is in my brain and not trauma related. My brain is not functioning as it should already, and meds may exacerbate that. If only all positive stories re ADs and T were available online rather than the negative ones.

 

[Candy]

-Ask the GP to send you to the audiologist ASAP, and get a masker, they can fit it on the day - it works to give you a break.
-Carry on with CBT and behave as if. Sleep and do stuff, that's how the first few months will roll. I was also signed off work like you...it's ok, you'll get back there once your anxiety is down. In fact it will form a big part of distraction.

The fact that sometimes you don't hear it is very encouraging...in a few months time when you're not scared of it anymore, you'll simply enjoy those days.

Hang on in there...early weeks, months are tough, we're all here for you.

 

[Jaybeee]

@Candy thank you for your advice.

 

[Jaybeee]

@Candy did you take any meds early days?

 

[Jaybeee]

I'm also wondering, if a small dose of diazepam makes the noise go quiet, does that suggest a huge anxiety my T?

 

[Samantha R]

@Jaybeee
Firstly, no, diazepam calming your tinnitus is actually common. I believe the way it acts on the brain is what quiets the tinnitus, not the fact that your anxiety comes down.
Unfortunately it is not really a long term solution.
My tinnitus is also in my brain and not my ears and I also don't know why I have it, but if I had not taken the Mirtazapine I don't know what I would have done. From what I researched, it is one of the 'safer' AD's and basically gave me my sanity back.
Six weeks after onset I needed it after realising a benzo wasn't a sustainable sleep aid.
At first I wondered whether I'd always had these sounds, I think I was in denial. There was no way I had this noise and just 'latched' onto it. I would have known.
I am considering Nortryptaline on the recommendation of a few on this forum and some studies that show it may help to quiet tinnitus.

 

[Jaybeee]

@Samantha R it sounds so simple ..... why can't they just make a drug like diazepam that isn't addictive?! I too researched the ADs and asked my gp for mirtazapine. But the louder T each morning I tried it meant I just couldn't possibly keep trying it. Maybe it was the sedative side of things, I don't know. I have been prescribed sertraline but not taken one. And yes, I also have seen the positive comments on noratryptyline. Did you try any supplements early on?

 

[Samantha R]

@Jaybeee
Yes, I've tried many supplements and nothing has worked!
I don't make a habit of listening to my tinnitus (don't go in quiet rooms, if I do, I make sure I am busy or have sound on around me), don't monitor it and mask at night.
When I stopped paying it attention, I found my habituation started.
Having said that, I'm still trying different things to get some relief.
I've often thought why can't they make a drug that acts like a benzo, but I guess it's not that simple! Lol.

 

[Ed209]

@Ed209 hi Ed. Did you ever take ADs? @Samantha R your situation sounds very similar to mine. I awoke with ear fullness and once that had gone, I latched on to a brain sound that I feel might have always been there. But things are a bit of a blur as panic set in right away and my memory of the earliest days are muddled. How long did you leave it before taking mirtazapine.. and r u considering another med now? I am seeing a gp again today, but my fear of meds is only because my noise is in my brain and not trauma related. My brain is not functioning as it should already, and meds may exacerbate that. If only all positive stories re ADs and T were available online rather than the negative ones.

I've never taken AD's, but maybe I should/should have. I wouldn't rule it out but drugs have never been my preferred choice. I've always exercised instead.

That doesn't mean I'm against AD's, I see a use for them when things get severe. I suppose my negativity towards them is based on my moms experience, as she has been on different AD's for depression and in her case they never really helped. I know for other people they can be life savers.

 

[Michael Leigh]

@Jaybeee
Hi Jaybeee. There has been some very good advice given on this thread but I would like to add the following and don't mean to step on anyone's toes. You are in the early stages of tinnitus and the best treatment for you in my opinion, for your tinnitus is to do "nothing" and wait it out. The ear is a very delicate organ. The only thing that I recommend is to take an antidepressant that's my first choice, or to try @billie48 suggestions which are very good.

You need to get your stress and anxiety under control. Once this is done you'll begin to feel better. After tests are done on your auditory system and hopefully everything is okay a referral to Audiology for recommendations on tinnitus management and treatments. If there is no underlying medical condition causing your tinnitus, it is usually best to start treatment for tinnitus around 6 months. Many people habituate within this time and tinnitus can also go away.

The ear is too delicate an organ to start treatment in the early stages. It is for this reason ENT doctors prefer to wait.
Michael

 

[glynis]

Hi @Jaybeee,
I have read all your posts and can see you are in a delicate position at the moment and I know your struggling to do the right thing without feeling worse than you already are .

I think you need something help you sleep and calm your anxiety down and take the edge off your tinnitus .

I do think its time for a antidepresant medication for you.
Don't be scared to take it as you will start off on a low dose and mirtazepine will help sleep and anxiety and kind on your ears.
Nortryptaline is a good one also.
Larozapam or Diazipan would be good just to help you with the first week of AD medication as will help you relax and stay calm and you should start to sleep better and feel better in yourself as the medication starts to build up in your system.
I have been in the same boat as you and was struggling but with support off your doctor and medications you will be fine.
Don't be afraid of a tiny pill and no shame in needing a AD medication as tinnitus and the unwanted emotions are hard to cope with for most people in the early months.
Take that first step forward and don't look back and monitor your progress and you will see an improvement and reward yourself as you go .....
You will be fine duck so nows the time to start fighting back ..You Can Do IT !!!!

Lots of love glynis

 

[Jaybeee]

@glynis @Michael Leigh @Ed209 @Samantha R @Candy thank you everyone. My day yesterday went from one of sheer despair (as most days are in the mornings) to one of hope thanks to sun, T nurse, GP, counsellor and my wonderful husband (though 2.5 mg diazepam may be the real cause!). I have been prescribed Citalopram because I have taken them a good 10 years ago and got on with them with no issues. Whether I take them now is another issue altogether. Oh and I have a wonderful full body massage in the evening at home. Delightful way to spend an hour and I wished this lady could visit every night!
Thank you all for your help and kindness. I think it's time perhaps that I take a break from the internet as I don't think it is helping me to distract from what has happened to me. Of course, I may struggle to actually do that in reality! Love to you all xxxx

 

[Michael Leigh]

Thanks for your kind words @Jaybeee and I'm pleased to hear that you feel a little better. Regarding the Internet, it's best go with how you feel and I wish you well.
All the best
Michael

 

[Candy]

I've been on meds for 6 years...Citalopram. Have had T for 10 months.

Good luck x

 

[Samantha R]

@Jaybeee
You sound much more positive and you have a wonderful husband by the sounds of it.
Take care and check in when you feel ready to so we know how you are going.

 

[Jaybeee]

@Samantha R would you mind PM me?

 

[Jaybeee]

Oh dear, in a bad way again. So much for me keeping away. Candy has managed to frighten me off the citalopram and I feel desperately anxious. I can't cope with these desperately dark moments

 

[Mentos]

@Jaybeee Sorry to hear about how you feel. I'm 2 years in, I am also prone to anxiety kind of person so it was very difficult for me in the first year. I feel much better now, I have good moments and bad moments, life with it might still difficult but I got back to life and nowadays I do all the things I was doing prior T onset: I do work (I'm less efficient for sure but I do my job), I excersize, I read, I watch movies, I do snowboard, ride bicycle and motorycyle, visit other countries etc. With time T became an annoyance rather than source of anxiety. I do sleep, I found my ways to relax (with music or masking sounds). I had to adapt but I live my life and so will you. Do I miss my pre-T life? Yes I do and I still hope a cure will be found one day. But till than everyday I find motivation to stand up from bed and fill my day with productive and enyojable things.
In my view staying at home is not the best option, You should try to get back to work as soon as possible. Otherwise you'll be left home 1-1 with the T which is not good. Stay strong, with time you'll get to the better place in life.

 

[Michael Leigh]

In my view staying at home is not the best option

With all due respect Mentos I know that you mean well but please note the following: Tinnitus comes in many forms and intensities and no two people experience it the same. It can be mild, moderate and severe. When it is severe it can be very debilitating mentally and a person might have to take time off work. This happened in my case when I first got tinnitus. Jaybeee is going through a lot of stress right now, and I believe she has made the right decision, of taking time off work to regroup and get herself together.
Michael

 

[Mentos]

With all due respect Mentos I know that you mean well but please note the following: Tinnitus comes in many forms and intensities and no two people experience it the same. It can be mild, moderate and severe. When it is severe it can be very debilitating mentally and a person might have to take time off work. This happened in my case when I first got tinnitus. Jaybeee is going through a lot of stress right now, and I believe she has made the right decision, of taking time off work to regroup and get herself together.
Michael

You might be right Michael, mine is mild so even though difficult I still find enough mental power to work; what I meant is that for me staying at home and dwelling on T was making me even more depressed, so in my case work gives a bit of distraction from T which I need. In the end it's individual decision of each one of us how to cope with this nasty condition, in my case getting back to work gives a sound of normality in this condition.

 

[Jaybeee]

@Mentos @Michael Leigh thanks both. Michael, you are right, I wasn't functioning at work, and unfortunately my employers have told me to home and get well. That will take me a while and so I can't go back to work, even if I wanted to. I'm hoping the better weather will help me through this horrendous period and that I won't want to go back.! Xx

 

[glynis]

@Jaybeee,
The best advise I can give you and everyone would agree would be go to see your doctor for a chat on how you feel and help you think things through about medications .
We are all routing for you and be here to support you what ever you decide to do with tinnitus and emotional problems it causes and through your ups and downs and dark moments.

Off load any stress and go at your own pace and if your happy with the medication before and know it works for you then that might be the best choice.
I promise you will get through this ..
Relax and calm down and have time to think under no pressure and everything will work out fine in the end... chin up duck...lots of love glynis

 

[Mentos]

@Mentos @Jaybeee

@JayBee have you tried masking your T with nature sounds? What I do to cope through the day is 24/7h sound enrichment, mainly rain sounds / pink noise, and if in a situation where I can't mask with stationary device I have in-ear white noise generators which calm me down and helps to manage the condition. You can try these methods to calm down your nervous system. To make you feel better I'll mention my wife has T as well for 12 years already, she is also kind of person prone to anxiety, but she fully habituated and never complains about T, she's very socially and professionally active and is happy with her life despite the T burden. So it's possible, just give it time.

 

[Michael Leigh]

You might be right Michael, mine is mild so even though difficult I still find enough mental power to work

@Mentos, thank you for your understanding. Without meaning to sound condescending you have said the operative word which is "mild" tinnitus. If you ever suffered from loud intrusive tinnitus and this level was sustained for a period of time, believe me you would understand the true meaning of what it's like to live with severe tinnitus. @Jaybeee what I am about to say is for Mentos' benefit, to make him aware what this condition can do to a person when it is severe. Please don't think this applies to you.

Mentos, I was medically retired from my job many years ago because of my severe tinnitus. According to my ENT consultant who I asked to be candid about my condition she said: I was the second worst patient she had ever met with severe tinnitus but vowed to never give up on treating me.
All the best
Michael

 

[glynis]

@Jaybeee,
Hope you are getting through the day ok and have a friend or family member who you can rely on as well as us.
I know its hard with dark times and this alone is enough to deal with and wondering why you feel this way and the sound itself and lack of sleep and lack of confidence makes the somplest task or problem harder to deal with and just finding the strength get through each day or deal with things that come out of the blue.
Your having a wobble and just finding your way to the right path to take to get back to your normal happy you.
I hope your time away from work will give you time to find your feet again and make progress day by day.
Enjoy your full body message tonight you lucky thing ...hope hes a lovely man with big hands ( private joke in their to someone )....lots of love glynis

 

[Candy]

@Jaybeee didn't mean to scare you...see my new pm message. Have no experience with meds other than citalopram which I was already taking and would have built tolerance to over the years... I was where u are...I am now functioning and working towards living a full life again and my t is not mild.
I saw your positive message and was inspired by your mindset, you are already building a toolkit which is great...one day at a time. Call me if you like, I live in London...

 

[Jaybeee]

Hi all. So after a bad week, with little quality sleep, I had a very good night's sleep last night. I had to sleep on my stomach as I had developed a bad back for a couple of days (which resulted in a major panic attack in the night and a visit by thr paramedics the previous night). It was such a relief to get a good 8'hours sleep. However, I have noticed this before - a good night's sleep seems to result in louder T. Probably the level currently is the worst I get it, as it fluctuates. This T thing is so cruel. So many of you say a good night's sleep helps.

 

[Jaybeee]

Oh God, another Monday morning comes around and I awake with the realisation that I have T and I feel sick to the pit of my stomach. Why have I bean dealt ths? I know I will spend my morning in a heap in the corner of my room blubbering all alone after my family have left me for the day leading their normal lives. I don't think I can take this for the rest of my life

 

[Kelvin]

@Jaybeee.
Sorry to hear you are still in a panic state.
I too have noticed that Mr T is nearly always worse after a good nights sleep.
Dont try and work it out ! You unfortunately have to just accept it for what it is....WEIRD.
Ignore it as best you can and get out and enjoy the sun and nature.
The thought process I go through is something like - oh its there - from experience I now know its only going to go when it wants to - but its not going to kill me - hell yeah its annoying - but hang - on who's in control - its my life - get lost Mr T - I'm going to get on and do what I can and not let you ruin my day week or life.
Wishing you some peace today in the wonderful sunshine X

 

[Michael Leigh]

Oh God, another Monday morning comes around and I awake with the realisation that I have T and I feel sick to the pit of my stomach. Why have I bean dealt ths? I know I will spend my morning in a heap in the corner of my room blubbering all alone after my family have left me for the day leading their normal lives. I don't think I can take this for the rest of my life

@Jaybeee for everyone. Try to look at the positive things in your life although it's not easy at the moment.

Life is Problematic

I have spoken to many people that have intrusive tinnitus. Some that are new to its sudden onset, and others that have habituated for a while, but for some reason a resurgence of the tinnitus has lasted longer than a spike, and has left them feeling insecure and with the believe that things wont improve. I just want to say that I have also been in these situations.

At times like this, one might find themselves thinking: My life is over. Why can't they find a cure? Why did this happen to me? Someone phoned me up who I had been counselling for a short while and was having a particularly difficult time with his tinnitus and said. Every time that he's out he can't stop looking at people's ears and wondering what it would be like to be them and not hear the sound of roaring tinnitus. The negative vibes I thought, we all get them and they can come upon us with little or no warning. I knew he was feeling sorry for himself and we are all entitled to feel that way but I wanted him to try and look at his situation differently.

I explained that even the most optimistic and successful people have down times and they don't necessarily have tinnitus, for life is problematic and few of us go through it without problems. We have no idea what another person is going through so be careful what you wish for. He continued listening. I know tinnitus isn't easy especially when it's severe but hold on to the thought that it will improve. I still had his attention so continued.

In an attempt to make him feel better I mentioned that life throws challenges at us and puts obstacles in our way. Perhaps if everything came easily to us we would never grow and develop and in some cases not reach our full potential without some struggle, or appreciate the good things that we have in life. He mentioned that he was a maths teacher, happily married with two children and had a business with his brother. He agreed that things hadn't always gone smoothly but overcoming certain problems and issues in his life seemed to make everything worth while, until he got tinnitus. I understood where he was coming from, but at the same time trying to reassure him that things would improve although it may take a little time.

His doctor prescribed an antidepressant but he didn't want to take them and asked me what I thought. It wasn't my place to advise him on this issue but I told him of my experience with medications for my tinnitus and the help I had received at ENT. When I first had tinnitus I had taken antidepressants for a while, which helped me not to become too down. In later years I took clonazapam 2x 0.5mg when my tinnitus was severely intrusive. It helped a lot. I was advised of it's addictive nature and closely monitored by my GP. I mentioned that I only take them once in a while now.

This gentleman kept in touch and told me he decided to take the anti-depressants. Then he went quiet for a while. One evening I got a call from him, telling me his tinnitus had reduced and was improving all the time and he had returned to work which made him very happy.

Michael