I've Become Isolated and Reclusive Due to Tinnitus and Blurred Vision

[all to gain]

Hi,

Due to an adverse reaction to medication I've had tinnitus since early June, but I didn't notice until late June.
In mid-June, and also as a reaction to the same medication, my vision became blurred.

Since then my life has changed, and I have become very isolated and reclusive. I've hardly been outside for the last 2 months; only to doctors' appointments and on the odd other occasion.

My ears feel completely compromised; I can feel clicking in each ear and I have high-pitched tinnitus in both ears. I went to an ENT two months ago, but that was before I had an MRI scan, which I feel has certainly made my tinnitus worse.

Having my vision get blurred and getting tinnitus at the same time has been a big shock to me, but I started getting used to the idea of blurred eyes as they can be fixed with glasses and/or a cataract operation. It was the tinnitus that was really bothering me.

However, today both have been bothering me, and my change in life circumstances is really getting to me. My quality of life has dropped from high to zero due to tinnitus and my eyes. I have become totally scared about going outside because I do not want to hear loud noises and make things worse.

I really don't know what to do. I see no end to this and I'm unable to accept my new life situation.

How have other people dealt with things?

 

[John Mahan]

We have exchanged a lot of PM's. You are afraid of everything and mental illness has taken over your life.
You are stuck in a repetition of fear of tinnitus and fear of your life moving forward.
You won't try medication apparently. Nobody has strength of will to will better mental health. Pretty clear you need your brain chemistry adjusted but you are unwilling because of the consequences.

So you are stuck.

We all start at a very low point and even withdraw like you which is normal. But we emerge. As I was trying to explain to Spike the other day, the only path to better mental health is 'living your life' on some level. Yes, we may need to make compromises. I really don't care if I go to concerts because I do so many other things I love.

The only way to love your life is to do things you love to do. Otherwise, it isn't much of a life and can even be a chronic repetition of fear you are stuck in.

No meds, stuck in the house, constant hyper focus on tinnitus would make the healthiest man or woman sick.

Somehow you have to break the chronic cycle.

Btw, there are people just like you without tinnitus who are afraid of life and won't leave their home. Medical term is agoraphobia:
https://en.wikipedia.org/wiki/Agoraphobia

They are sick somewhat like you.

You need to research how to emerge and what you are doing here so am providing my advice. Doubtful you can do this by yourself because your fear seems overwhelming. You will likely be helped with the guidance of a professional. Along my path I talked to a few people and my family doctor, neurologists, an audiologist etc, but I wasn't as sick as you. I didn't want tinnitus to take such a stranglehold. Of course you are sicker. I personally believe you need meds. I know you believe meds caused your problem and hence your phobia. But meds are vastly different or can be including their relationship with tinnitus.

You need to step carefully. But you must emerge to have any quality of life. You may at some point be sick of being sick and start the journey.

Good luck.

PS. Early morning shout out. Now I am off to do cycling with my friends in the sun and wind. Fitness is the key, strong body and mind. Only way to achieve it is by living life. Will swim later. Stuff I love. Focus on tinnitus and being stuck in the house makes anybody sick.

Go on youtube and search for Neuromod Testimonials for a bit of hope. Neuromod is commercially available in Europe now and Dr. Shore's device will be available in the US likely by the end of next year. I will be using it.

 

[all to gain]

Hi John,

I am on medication, i.e. prozac (40 mg), but it's not doing much except keep my serotonin levels up. But I'm depressed on top of that, if that makes sense, and do not want to up the dose as I don't want to compromise my ears further. Once bitten, twice shy.

I am stuck in a cycle, and the fact that i can't go back to my old life fills me with dread. I liked what I had, not what I've got. I have an all or nothing mentality. I would love to do the things I love, but do you know what, for me that was relaxing on my bed and daydreaming in silence. For that to no longer be possible has got me very down.

Yes, I have definitely become agoraphobic.

 

[John Mahan]

Many have reported adverse affect to tinnitus with a selective serotonin reuptake inhibitor (SSRI) aka Prozac.
So yes, step very carefully there. But of course, with insufficient dosage, likely won't improve your depression to the point you can step away from your despair.

Are you in the US or Europe?

What I would do is:

...work with a Psychiatrist and experiment with different meds. Clearly what you are doing isn't working. I take nothing for example other than Clonazepam 'as needed'. Many are helped with Benzo's to curb anxiety which don't have the adverse affect to tinnitus that SSRI's have. Only a consideration.

Discuss with your mental health professional how you incrementally emerge from your anxious state of needing to stay isolated which is contributing to your despair.

Second thing I would do...is focus on help forthcoming from bi-modal stimulation. Countless testimonials from very acute tinnitus sufferers that has given their life back.

 

[all to gain]

Europe.

There are said to be two types of depression. First, those that have low serotonin can get depressed, hence need a boost. I've done that. But, second, there is depression that anyone can get regardless of serotonin levels due to something happening in life. That's what I have now. No amount of prozac with change that type of depression. In other words you can still be depressed regardless of how much prozac you take.

Unfortunately, experimenting with meds is what has to a degree led to my already intrusive tinnitus. My dr said about going on to a different class of ADs and gave me the name of one that he thinks would be good. He told me to research it as he seems to be unwilling to as it is him who gave me the last meds that cause my eyesight and tinnitus. Anyway, the AD he told me to to look at has a 1-10% chance of causing tinnitus, so I presume it can make tinnitus worse too. Simply can't trust this dr anymore if that's his best suggestion. My faith in health professionals is near zero unfortunately at the moment.

It's definitely hard treating me due to the all or nothing mentality.

 

[John Mahan]

Europe.

There are said to be two types of depression. First, those that have low serotonin can get depressed, hence need a boost. I've done that. But, second, there is depression that anyone can get regardless of serotonin levels due to something happening in life. That's what I have now. No amount of prozac with change that type of depression. In other words you can still be depressed regardless of how much prozac you take.

Unfortunately, experimenting with meds is what has to a degree led to my already intrusive tinnitus. My dr said about going on to a different class of ADs and gave me the name of one that he thinks would be good. He told me to research it as he seems to be unwilling to as it is him who gave me the last meds that cause my eyesight and tinnitus. Anyway, the AD he told me to to look at has a 1-10% chance of causing tinnitus, so I presume it can make tinnitus worse too. Simply can't trust this dr anymore if that's his best suggestion. My faith in health professionals is near zero unfortunately at the moment.

It's definitely hard treating me due to the all or nothing mentality.

Pretty easy to throw health care professionals under the bus. Aside from sharing of anecdotal accounts here, about all we have and in fairness to them, they have very limited good advice when it comes to tinnitus in part because it is so heterogeneous in origin. Even with definitive subtype, very little is available to help.

And...independent of tinnitus because everybody's brain physiology and chemistry are different, its virtually impossible to find the right med and dosage right out of the gate. Almost a statistical impossibility and why trial and error...yes with some consequence, is almost mandatory if you want to find Goldilocks.

I have hope for you because you have the mental health to seek help. You will emerge. Many if not most of us have been to your depths when this scourge came into our life.

Its kind of like the cliché, we all get knocked down in life, that's a given. Its how we respond to getting knocked down.

Now the reason why that is a trite cliché and not an absolute truism, is because of the great variation in mental health. This all funnels into the conversation about lack of free will. For example, any sensible person I am sure would agree, pick yourself up, dust yourself off, emerge and move on but you can't. I believe you can with the right roadmap but will take time.

You can't dismiss med's altogether as they likely are a gateway to your recovery. To give you confidence, you need to start on extremely small dosage and increase from there to give you some level of belief your tinnitus will be unaffected.

I mentioned Neuromod and you didn't respond. You are in Europe. Are you pursuing Neuromod treatment and if not, why not?

 

[all to gain]

Do you mean Lenire? Is there any proof that it works? It's quite expensive at 2500 euros.

 

[John Mahan]

Do you mean Lenire? Is there any proof that it works? It's quite expensive at 2500 euros.

I suggested you research it and apparently you didn't.
2500 Euro's versus your sanity? If I were you, I would rob a bank.

This and many more. It exists after about 8 years of research and testing for a reason...

 

[all to gain]

I asked because there doesn't seem to be much positive feedback in the Lenire thread; at least from what I can see.

Has anybody on here who has tried it had good results?

 

[John Mahan]

I asked because there doesn't seem to be much positive feedback in the Lenire thread; at least from what I can see.

Has anybody on here who has tried it had good results?

I see. Do you have a link to the Lenire thread?

 

[ajc]

I see. Do you have a link to the Lenire thread?

How blind can you be? It's in the "Treatments" and you couldn't miss it if you wanted to...

 

[all to gain]

I see. Do you have a link to the Lenire thread?

• Lenire — User Experiences and Reviews
• Lenire — Bimodal Stimulation Treatment by Neuromod

 

[John Mahan]

How blind can you be? It's in the "Treatments" and you couldn't miss it if you wanted to...

Spike is that you? Having a good day?
That darn loud music damage.

 

[Juan]

Europe.

There are said to be two types of depression. First, those that have low serotonin can get depressed, hence need a boost. I've done that. But, second, there is depression that anyone can get regardless of serotonin levels due to something happening in life. That's what I have now. No amount of prozac with change that type of depression. In other words you can still be depressed regardless of how much prozac you take.

Unfortunately, experimenting with meds is what has to a degree led to my already intrusive tinnitus. My dr said about going on to a different class of ADs and gave me the name of one that he thinks would be good. He told me to research it as he seems to be unwilling to as it is him who gave me the last meds that cause my eyesight and tinnitus. Anyway, the AD he told me to to look at has a 1-10% chance of causing tinnitus, so I presume it can make tinnitus worse too. Simply can't trust this dr anymore if that's his best suggestion. My faith in health professionals is near zero unfortunately at the moment.

It's definitely hard treating me due to the all or nothing mentality.

I think you just have to realise the new situation and fully embrace it, just accept that your old life is not going to come back and some adjustment is needed. From there you will be able to make progress.

I would also advise you to try to get distracted with any activity you like but that does not need to produce any useful result. I mean, now adults are doing simple stuff like colouring books (like kids) because it is therapeutical, it takes their mind from a goal oriented life and lets them spend time doing something whose result does not matter, it is just a distraction that helps the mind relax. It can be going for a walk, or doing some sport, painting, etc, something that you do not need to do well to enjoy, that does not require you to "perform well" in any way, and that will take your focus out of health issues.

 

[all to gain]

I think you just have to realise the new situation and fully embrace it, just accept that your old life is not going to come back and some adjustment is needed. From there you will be able to make progress.

I would also advise you to try to get distracted with any activity you like but that does not need to produce any useful result. I mean, now adults are doing simple stuff like colouring books (like kids) because it is therapeutical, it takes their mind from a goal oriented life and lets them spend time doing something whose result does not matter, it is just a distraction that helps the mind relax. It can be going for a walk, or doing some sport, painting, etc, something that you do not need to do well to enjoy, that does not require you to "perform well" in any way, and that will take your focus out of health issues.

You are right, I can't go back in time. I have little choice but to accept that my old life is not coming back. But i'm finding it impossible at the moment. I've lost something that was very precious to me... silence and the ability to relax!! I cannot relax anymore.

 

[Harley]

You are right, I can't go back in time. I have little choice but to accept that my old life is not coming back. But i'm finding it impossible at the moment. I've lost something that was very precious to me... silence and the ability to relax!! I cannot relax anymore.

I personally hold the opinion, that the ability to relax and sleep are the very foundation of our well being.
I have lost both and it feels like I died 3 years ago.

It feels like one very long day, that just won't end.
Almost as if the time had stopped.

Like being stucked in another dimension, where everything looks the same, but it"s not.
Kind of like that series "Stranger Days", for those who had seen it.

 

[all to gain]

I personally hold the opinion, that the ability to relax and sleep are the very foundation of our well being.
I have lost both and it feels like I died 3 years ago.

It feels like one very long day, that just won't end.
Almost as if the time had stopped.

Like being stucked in another dimension, where everything looks the same, but it"s not.
Kind of like that series "Stranger Days", for those who had seen it.

I have lost both and it feels like I died 3 years ago.

It feels like one very long day, that just won't end.
Almost as if the time had stopped.

Like being stucked in another dimension, where everything looks the same, but it"s not.
Kind of like that series "Stranger Days", for those who had seen it.

I agree 100%.

 

[Juan]

I cannot relax anymore.

You just need to take the focus off your hearing. It takes time but you will be able to do it.

 

[all to gain]

You just need to take the focus off your hearing. It takes time but you will be able to do it.

The thought of having to do this for another 30 years is scary.

 

[Juan]

The thought of having to do this for another 30 years is scary.

There are horrible diseases and health conditions out there, way worse than tinnitus.

 

[all to gain]

There are horrible diseases and health conditions out there, way worse than tinnitus.

I realise that, but tinnitus is tortuous. Like a slow death.

 

[Juan]

I realise that, but tinnitus is tortuous. Like a slow death.

No, fortunately it is not life threatening.. it just means a long process to adapt

 

[all to gain]

No, fortunately it is not life threatening.. it just means a long process to adapt

It is life threatening. People kill themselves because of it.

 

[MJv]

I realise that, but tinnitus is tortuous. Like a slow death.

I totally agree on that... it can be worse than cancer.

 

[John Mahan]

I totally agree on that... it can be worse than cancer.

Not only is tinnitus worse than cancer and will add heart disease and MS but tinnitus is worse than the apocalypse or the sun burning out. Even worse than a hang nail.

 

[John Mahan]

The thought of having to do this for another 30 years is scary.

Builds character and a stronger body.

 

[Bobby Sinatra]

Hi John,

I am on medication, i.e. prozac (40 mg), but it's not doing much except keep my serotonin levels up. But I'm depressed on top of that, if that makes sense, and do not want to up the dose as I don't want to compromise my ears further. Once bitten, twice shy.

I am stuck in a cycle, and the fact that i can't go back to my old life fills me with dread. I liked what I had, not what I've got. I have an all or nothing mentality. I would love to do the things I love, but do you know what, for me that was relaxing on my bed and daydreaming in silence. For that to no longer be possible has got me very down.

Yes, I have definitely become agoraphobic.

What are the meds that got you in this mess?

 

[all to gain]

What are the meds that got you in this mess?

Propranolol and Prozac.

 

[Tybs]

No, fortunately it is not life threatening.. it just means a long process to adapt

When I started out with this condition, I wished it was life threatening: having the torture end by simply being removed from existence seemed like a heavenly blessing. Not meant as negative criticism, but the "it's not life threatening, stop worrying" statements felt like a bad excuse to me to just end the discussion. I was not afraid to die, I was afraid to keep living like this. Being only 32 years old, it felt like my wonderful life ended just when I had started to build it up.

That was half a year ago, and my perspective has changed a lot now. Though I still find the sounds annoying at times, I found out that heading out and finding new (or old) things to do that I enjoy, over time it made me value my life again.

@all to gain
In that way, I agree with John: no one else can pick you up, you have to find a way to start enjoying life again by yourself (although other can of course support you in doing so). Find something, new or old, that you like to do. Starting to do so is the hardest part, but as days progress, you will notice you get used to the new tasks that are part of your chosen activity, and you will start enjoying them more. In my case, I used something simple that helped me to go outside again at the same time (Pokemon Go).

Not at all saying that this is easy to do: it will feel like trying to move a mountain at first. But trust that you have the capabilities to do so. You are unique as an individual, but you are also a human being, and as history pointed out plenty of times, humans have outstanding abilities where it comes to adaptation to new situations.

 

[JohnAdams]

@all to gain
tinnitus gave you blurred vision?