Hey, nice to hear from you, yeah medication is a tricky one isn't it. Part of me thinks I've come this far without it so I dunno if it's worth taking now, but then part of me thinks it may help... and part of me is wanting to wait for the MRI to see if there's anything observably wrong with my strange brain.@Vicki3116, I'm not a big fan of medications but I agreed to take a low dose of Klonopin when things got bad for me. I swear that after 2 weeks of taking it my tinnitus reduced by like 50%. And what's most important is the reactivity has gone down and the outside world doesn't sound so loud anymore.
I don't know how I'll get off it but for now I'll continue taking it in return for a bit of silence.
What I'm trying to say is that meds can help and don't have to be taken forever.
So maybe try that Amitriptyline. I took it a long time ago for headaches and it helped. It was easy to get off it.
Hehe you made me laugh. These are all positive signs. Worrying about a yoghurt is much better than focusing on horrible noises. I hope the MRI comes clean. I've got mine next Tuesday. Decided to do it to hopefully feel more relaxed. Hope you got that yoghurtHey, nice to hear from you, yeah medication is a tricky one isn't it. Part of me thinks I've come this far without it so I dunno if it's worth taking now, but then part of me thinks it may help... and part of me is wanting to wait for the MRI to see if there's anything observably wrong with my strange brain.
It's kind of hard to explain how I am at the moment, my brain/ears are going wild, my chest feels like someone is sitting on it because my body is so tense but in my head I'm not bothered. I know I'll outlast these experiences/thoughts/feelings so they can take their sweet time whilst I sit in this supermarket car park and wonder if they've got my favourite yoghurt because they didn't last week. It's so weird to think normal thoughts with this absolute trip going on but what can I say, it's good yoghurt.
They didn't have any! Unbelievable.Hehe you made me laugh. These are all positive signs. Worrying about a yoghurt is much better than focusing on horrible noises. I hope the MRI comes clean. I've got mine next Tuesday. Decided to do it to hopefully feel more relaxed. Hope you got that yoghurt
thank you for your reply, looking forward to your insights! I'm not sure if I actually have cervical kyphosis (yet, anyway), as I've only found that term by googling. The doctor just said I had a very "steep" cervical spine. I assume by that she means it's unusually straight, as she also said the cervical spine is usually a little curved...
None of the doctors think I need an MRI. They say my tinnitus is from stress/anxiety. So I'm doing it from my own pocket to see if my brain is actually ok.They didn't have any! Unbelievable.
Is it your first MRI in relation to this? Is there anything in particular that was putting you off the MRI? xx
I think if it helps to put your mind at rest then it's worth the cost. Whereabouts in the world are you? I had my first MRI on the NHS but I'll be paying for the second one, am anticipating it'll be at least £1000, if not more. Did your tinnitus start out of the blue? xxNone of the doctors think I need an MRI. They say my tinnitus is from stress/anxiety. So I'm doing it from my own pocket to see if my brain is actually ok.
I'm in Mexico right now but have lived in the UK for many years. Am going back in 3 weeks. It should be less than £1000. I've looked it up for London and it was around £700. Here I'll pay less than that so want to do it before I go back. Good luck with yours.I think if it helps to put your mind at rest then it's worth the cost. Whereabouts in the world are you? I had my first MRI on the NHS but I'll be paying for the second one, am anticipating it'll be at least £1000, if not more. Did your tinnitus start out of the blue? xx
How are you doing? Failed to mention I also take Lunesta for sleep. Appreciate your positive outlook.Hey, anxiety is absolutely awful and will no doubt be affecting your thought processes and clouding the way you see yourself. Please don't feel bad that you don't feel you're improving because in some way, you will be. Look how resilient you are, you're dealing with things that most of the population never experience and you're still here, day after day.
Have you ever take Zoloft before? Have you tried any other medication? xx
It sounds like the work of Frank Kinslow would help you given your description of it disappearing if you do nothing. All of his work revolves around doing nothing and by doing so, entering a state of deep relaxation. It's very hard to explain, but it has been very helpful to me.The weirdest thing is though, if I lie perfectly still with no external stimulus and don't think, it all goes away. As soon as I think, it's back. I genuinely think there's a massive psychological element to tinnitus and this is why I get so frustrated, like I should be able to right my own brain/mind if you know what I mean.
Hey, nice to hear from youA few comments to add to the comments already made by others. I hope mine are helpful... but please feel free to reject them if they aren't.
As you can see in my avatar, I have had tinnitus since 1985. Sometimes it's been terrible. Lately, it has been very very mild, and sometimes it goes away entirely. I'm habituated to it. It's just a thing now.
It's like when I first had to start wearing glasses. It was very annoying having to feel this heavy thing on my nose at first. Now, it's just a thing.
I think the worst part about tinntus is the mental anxiety that focusing on it can cause---by wanting to fight it and make it go away so you can be "normal" again. Then, when it does invariably improve---most of us long-timers have experienced this fluctuation---the anxiety that it will get worse again. Then, if it does get worse again, the anger and depression and frustration---and the fear that it will never get better again.
All of this thinking causes suffering.
There is no normal or abnormal.
There is only what is.
What I'm saying is, my attitude at this point---after 36 years---is very zen. Either the tinnitus will get worse or it won't. Either it will get better or it won't. Either it will stay the same or it won't.
No matter what happens, though, I'm staying right here.
I'm not going anywhere.
I'm living my life no matter what.
I'm sorry you're having such a difficult time right now. I truly hope the tinnitus disappears for you and you can just go on with your life as it was before. That might happen. It often does. That's the thing about tinnitus---there is no normal course of the syndrome. Sometimes it just disappears like it just began---out of nowhere. Sometimes it comes and goes for 36 years. Sometimes it stays constant. No way to tell what your future will be.
You can't control that.
But you can, with effort, decide how to respond to it.
I know that seems impossible right now... but this is the best I can offer to you after living with tinnitus for 36 years.
It's totally possible to have terrible tinnitus and not be emotionally bothered by it at all. I know that's not where you are right now.... but it's possible!
I hope that gives you some hope.
It will get better.
Hey, sorry, I thought I'd replied! Yeah I'm doing ok, how are things with you? Any changes? xxxHow are you doing? Failed to mention I also take Lunesta for sleep. Appreciate your positive outlook.
Glad to hear you are doing ok.Hey, sorry, I thought I'd replied! Yeah I'm doing ok, how are things with you? Any changes? xxx
Dear Vicki - such a succinct summary of this nightmare scenario, and such an inspiring suggestion for diverting the hopelessness into the only possible optional challenge remaining to us.Hey, I totally get it, the anger and the frustration isn't easy to get over. I remember one day I almost smashed my bathroom up because I was completely enraged at the whole situation, like how could this be happening to me? Me of all people, I don't deserve this, I've got this amazing new house and now I've got this and it's going to ruin everything I wanted. But the situation is what it is, it's ok to be angry that this has happened because one day you won't feel that way.
The crap thing is you can be as angry, as sad, as anxious, as suicidal as you like but these noises/sensations aren't magically going to disappear. And that is hard to take. There's no one you can take this out on to satisfactory effect, there's no bargaining to be had, it's happened and we are left picking up the pieces. But you'll get there. No one stays in the same emotional state forever, people move on at different rates but it happens.
Calming down took a good while, believe me. It's just a process, the high emotions will burn themselves out, or be taken out by medication if you ever get to that point, either way the result is the same. From there it's a matter of looking at what you have to deal with and you'll find that you can separate your mind/emotions from the noises/experiences. My head has been a complete noisy wreck today but I go with it, I literally don't have a choice and I'm ok with that.
It's interesting you say brain damaged, because that's along the lines of how I explain it to myself to give myself a reality check. It's excessive neuronal activity. That's it. Is it weird? Yes. Can it be disorientating? Yes. Does it make life more difficult? Sometimes. Am I less happy overall? Yes. Can I accept that? Yes.
It's horrendous that any of us have to deal with this, but it's here and we can't change that. We don't have a choice about that, but we do have a choice in how we feel about ourselves. One of my friends came to see me, we sat at the table and he was talking to me. At the end of what he was saying I just said 'I'm really sorry, I've got no idea what you were talking about because the noises were too bad'. He held my hand and said it was fine. I think the real challenge here is to be that friend to yourself. It's incredibly difficult but showing yourself that patience, understanding and care makes a massive difference because ultimately what's done is done and it's you that has to live with you, no one else.
I used to think to myself all the time 'I can't do a damn thing without hearing these noises', but then it became 'I wonder what I can do despite hearing these noises'. It's more than I thought. It's not what I could do before, but maybe it will be one day.
None of this is easy, not in a million years is it easy, but it's also not over. You're stronger than you think. I guarantee you that xx
Hey, nice to hear from you, I've read a lot of your posts and your strength and stoicism are inspiring. I'm sorry to hear you're having a rough time, do you have any idea what's contributed to that?Dear Vicki - such a succinct summary of this nightmare scenario, and such an inspiring suggestion for diverting the hopelessness into the only possible optional challenge remaining to us.
"I wonder what I can do despite these noises."
Inspirational.
Thank you Vicki.
I'm having a very tough time myself just now
and you helped me.......x
Dave xx
Jazzer
I lost Sylvia, the love of my life, four months ago.Hey, nice to hear from you, I've read a lot of your posts and your strength and stoicism are inspiring. I'm sorry to hear you're having a rough time, do you have any idea what's contributed to that?
Remember there's no pressure here, you're doing just fine. And however you feel is ok. Take a deep breath, tell yourself you're doing your best and that's enough. One day at a time my friend xxx
You are not unloading at all! You're reaching out and telling people how you're feeling and that can only be a good thing.I lost Sylvie, the love of my life, four months ago.
She was literally my everything, my lover, my wife, my mother, my hypnotherapist.
And now I cope with severe Tinnitus, Parkinson's, and Loss.
But I need to come through this period.
Responsibilities.
Children, grandchildren, pussycats.
Sorry to unload on you Vickie,
Dave xx
Jazzer
'WOW - Vickie - what a beautiful post for me to read.You are not unloading at all! You're reaching out and telling people how you're feeling and that can only be a good thing.
Sylvia looks absolutely amazing, and to lose someone who is essentially the foundation of your life is going to be difficult for anyone, never mind all the rest that you're facing. That photo is beautiful, you can see the love between you both.
I'm so sorry for your loss, there's nothing I can say that will make it easier and I don't want to give you platitudes about remembering the good times etc, because I'm sure you're well aware of them. That's exactly what makes loss so painful, isn't it?
I really admire your courage and strength. I've read a lot of your posts and the thing that always strikes me about you is, despite everything you're facing, your personality shines through. Yes you have your challenges (that word doesn't seem adequate really) to face, but the you underneath it all, the real you, is always there.
So carry on putting one foot in front of the other for those children, grandchildren and pussycats in your life who love you. And I know I don't have to tell you this, but there's love for you here too. No one is going to replace beautiful Sylvia, not in a million years, but you're not on your own.
Is there anything you've found that helps through this rough time, anything you look forward to? Do you still do your morning meditation? xxx
I'm so pleased you have that recording! That's such a lovely thing to have, being able to hear someone's voice when they're no longer here is just magic. I still have my Great Auntie's voicemail messages to me and listen to them for comfort. Admittedly they're mostly 'hello.....hello.....what is wrong with this f*****g phone....hello?' because she didn't really have a clue how voicemail works, but still'WOW - Vickie - what a beautiful post for me to read.
You see me so well.
You have the intuition to suggest real healing thoughts.
You remind me of the angel I have just lost.
I have long thought that the strongest asset of this website is that it provides the opportunity for sufferers to meet, relate, and 'spread the love.'
My darling Sylvia's final words were:
View attachment 43947
Yes Vickie - I still meditate every morning, and I replay Sylvie's hypnotherapy session which she recorded onto my iPhone before bed each night.
Dave xx
That's such a lovely thing to say, thank you. I believe in trying to create happiness, or at least hope, for other people because if you can create it, then you can't ever doubt it exists. Even if it's not yours to hold right now xxxWow, @Jazzer. I hope to be lucky enough to one day find my own Sylvia. I'm deeply sorry for your loss but I truly do believe that the ones who love us never really leave us. I'm sure your children and grandchildren feel lucky too, to have such a strong (grand)dad.
@Vicky3116, the fact that despite your current situation you have such beautiful words for others says a lot about you. I believe you'll get through this and wish you all the best.
You're not wrong, 100mg is a therapeutic dose for depression. Usually they don't prescribe much more than 25mg as a sleep aid for tinnitus.The neurologist said he wants me on 100mg a day by the time he sees me in 6 weeks and I feel like 100mg a day is A LOT.