Really Need Some Advice About How to Support a Sufferer

[LoveMyHusband]

Hi. My husband has just been diagnosed. As long as he was able to convince himself that it was a build up of ear wax or something that could be fixed, he was ok. But doctors now say it is caused by some (relatively minor) hearing loss and is unlikely to go away.

He is miserable. He is terrified of going insane. He is terrified of becoming a grumpy, unhappy person. He's been doing a lot of reading on sites like this one and is really focused on the negative posts. We will definitely be trying some of the various therapies, but it's all new right now and he's scared that nothing will help.

So how can I best support him? How do I send positive messages that things will be ok when I am not suffering, and so many of those who are feel so miserable? I don't want to downplay his suffering (or any of yours!). And I certainly don't want it to sound like I am being critical of him or any of you for voicing your own concerns and frustrations.

I guess the short way to ask my question is, what can I do to support my husband and try to reassure him that he can still lead a happy life?

 

[GregCA]

What's the cause of his hearing loss? (some can be fixed, and along with that the T)

A few "reassuring" thoughts:
1) it hasn't set in yet - it can go away the same way it came in
2) you haven't tried much yet (diet, rest, hearing aids, masking, etc): some of this can make it more bearable (depending on how severe it is)
3) what he is feeling is common (anxiety, suicidal thoughts, etc) - he is not an "outlier" (or crazier than the rest of us)
4) many people learn to "live with it" (and there are therapies to help with that), but understand that at this stage in his "T journey" this may not be what he wants to hear, as he's going through the stages of grief.
5) things typically get better with time (that's the brain working for you), but it can take quite a long time

As "the healthy one", you need to understand that this isn't like a broken leg or a cold or even an appendectomy. It is life changing and you should expect a bumpy ride ahead. Never forget that when you see him "resting", he is actually under extreme stress, so give him a "discount" if he is more agitated/nervous/impatient/on edge than usual. Tell him you're going to go through this together no matter what happens, and that you'll be there to support him unconditionally.

I personally always felt more agitated when people would tell me to "relax", like "you look stressed out, just go out in the backyard on the grass and relax - there's a nice breeze and the birds are singing, it's very calming!" - it can make you boil inside when you have T. They think they're helping, but...

Good luck.

 

[LoveMyHusband]

Thanks Greg. One of the many things driving him crazy is that we have no idea what the cause was. He can't point to teenage years of loud music or a recent loud noise experience or an infection or... He's 50, and the doctor seems to be attributing it to age (though 50 is so young!). He's been using a cpap machine for the last 1.5-2 years, and I'm trying to determine if there could be a correlation there?

I appreciate all the suggestions and reasons for hope you've provided. I won't pretend to understand what tinnitus feels like emotionally or physically, but I do have some experience dealing with depression and depression meds, so I feel like I have a small window into what he might be experiencing in that regard. I never appreciated the well-meaning suggestions to "just relax" either!

Hoping you're able to find small and big moments of peace and happiness!

 

[billie48]

Welcome to the forum, @LoveMyHusband. What a loving poster name you have chosen. You are surely a wonderful and supportive wife to your husband. He is ever so lucky to have a supportive spouse to help him through this dark tunnel of tinnitus suffering.

If his T is relatively new, then it is understandable that the suffering will be quite tough at the beginning. The body is rejecting this new alien sensation which has no cure for now, and which the brain can't figure out how to stop it. The result is stress, anxiety, panic, depression, sleeplessness and a whole load of negatives, causing a person to lose appetite, to lose interest in things or in life, and to have no energy much to do anything. I understand his suffering for I had gone through, like most members did, the initial horror show and I was in a mess physically and mentally.

A big part of T suffering is mental. So by being negative or by zooming on negative stuffs, we add more stress and anxiety which can aggravate T to make it worse. Perhaps help him to channel his interest in reading the positive stories of success. There are so many of them in the Success Stories forum under Knowledge Base. By reading the stories, he will know that most people went through tough struggle like him. I was in a mess having ultra high pitch dog whistle T and severe hyperacusis. Also I had suffered PTSD due to the tragic loss of my 5-year old son, having decades of anxiety and panic disorder prior to T & H. So my weakened nerves simply couldn't handle the arrival of T & H and I had relentless anxiety and panic attacks daily and sometimes hourly, surviving only on benzo tranquilizers and anti-depressants as well as sleeping pills. I had suicide ideations when the brain saw no way out of the immense suffering. I thought no way I could recover and enjoy life again.

But never say never. Today I live a normal and productive life, enjoying life immensely, travelling, fishing, gardening, hiking, singing and dancing plus whole loads of other interesting things. Good life can be back. I wrote my success story after 3 years and I am not alone. The success stories are filled with people getting better. Here is my story which I share some helpful insights. Also check out the most read success story by IWLM who is back to silence after 40 years of suffering. He has a simple but effective approach. Check these out:

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

https://www.tinnitustalk.com/threads/back-to-silence.7172/

Tell your husband that millions have T and even celebrities have them. David Letterman and William Shatner (Star Trek Captain Kirk) both have T. In this 1996 show they talked about their T. Letterman has 2-tone T which he said is like the emergency broadcast system on test mode, lol. Shatner had suffered initially with his T too. But as you can see from this video, they seem to move on with life and still productive in their career. So I hope your husband will find some comfort to know that most people including celebrites get better over time. Take care and God bless.

 

[LoveMyHusband]

Thanks so much, billie48. I actually saw your post over in the positivity thread, and it REALLY helped me. I'm sorry for your struggles, but so glad that you're sharing what you've learned to help others!

 

[GregCA]

One of the many things driving him crazy is that we have no idea what the cause was. He can't point to teenage years of loud music or a recent loud noise experience or an infection or... He's 50, and the doctor seems to be attributing it to age (though 50 is so young!). He's been using a cpap machine for the last 1.5-2 years, and I'm trying to determine if there could be a correlation there?

It's possible, but I wouldn't say it's likely.
Have you run a bunch of tests to see what's going on with his ear? CT scan, MRI, etc... You might be able to discover a lead to some condition that is fixable.

 

[billie48]

Thanks Greg. One of the many things driving him crazy is that we have no idea what the cause was. He can't point to teenage years of loud music or a recent loud noise experience or an infection or... He's 50, and the doctor seems to be attributing it to age (though 50 is so young!). He's been using a cpap machine for the last 1.5-2 years, and I'm trying to determine if there could be a correlation there?

I appreciate all the suggestions and reasons for hope you've provided. I won't pretend to understand what tinnitus feels like emotionally or physically, but I do have some experience dealing with depression and depression meds, so I feel like I have a small window into what he might be experiencing in that regard. I never appreciated the well-meaning suggestions to "just relax" either!

Hoping you're able to find small and big moments of peace and happiness!

There are many possible causes to trigger or aggravate tinnitus, including but not limited to drug reaction or side-effects, ear or Eustachian tube infection, ear drum injury, fluid build-up feeling pressured, TMJ, high blood pressure or blood circulation problem, loud noise exposure or acoustic trauma, neck muscle problems, hearing loss, Meniere's, barotrauma from flight, grief for the loss of love ones, untreated sleep apnea, elevated stress, anxiety & panic disorder, etc. You mention he has sleep apnea issue. Make sure his cpap machine is doing the job. If there are leakage of the masks or if the pressure is not right, then sleep apnea remains untreated and can cause sleep deprivation. Both of these are known to aggravate T. How I know? Because I have sleep apnea issue for over 20 years and I have been using cpap machine too. I know when things don't work right, I would be dozy for the day and my T would spike to outer sphere. There is nothing worse than to the brain than being oxygen and sleep deprived, and it seeks T with a vengeance.

 

[LoveMyHusband]

Thanks again to you both. I managed to get us an assessment appointment tomorrow, so maybe we'll learn something there. We have a couple therapists who do CBT in the area, too - I was happy to see them in our network. Finding these resources is helping me to feel better - hope my husband will (eventually) be feeling better too.

Really grateful for the opportunities to learn in this chatroom!

 

[Zorro!]

Thanks Greg. One of the many things driving him crazy is that we have no idea what the cause was. He can't point to teenage years of loud music or a recent loud noise experience or an infection or... He's 50, and the doctor seems to be attributing it to age (though 50 is so young!). He's been using a cpap machine for the last 1.5-2 years, and I'm trying to determine if there could be a correlation there?

I appreciate all the suggestions and reasons for hope you've provided. I won't pretend to understand what tinnitus feels like emotionally or physically, but I do have some experience dealing with depression and depression meds, so I feel like I have a small window into what he might be experiencing in that regard. I never appreciated the well-meaning suggestions to "just relax" either!

Hoping you're able to find small and big moments of peace and happiness!

Sounds like your husband is going through the typical stages of tinnitus. Often when we realize tinnitus is here to stay we freak out without meaning to (our limbic system fires up the "fight or flight" response). Anxiety and depression can become very intense in this period. This causes us to fixate on finding out what caused the tinnitus in the hopes that maybe we can find a cure. In the long run a lot of people never discover the cause of their tinnitus, but that's something of a moot point anyway if you think about it.

There's a good chance that in time your husband will habituate to the condition. It may not seem like it now but eventually he could be feeling much better emotionally at some point. Trust me, I've been there. The first couple months of anxiety and depression are horrible. It's impossible to concentrate on anything other than the damn tinnitus. But after learning relaxation techniques (meditation, breathing exercises) and going to Cognitive Behavioral Therapy things began to feel better. My tinnitus is still there but I'm no longer freaking out over it. I'm sleeping much better at night and I no longer have panic attacks.

So what I'm saying is that there is hope. Seriously. A year from now your husband could very well be doing great. Tell him to stop reading the negative stories on these sites. There are a TON of success stories here and elsewhere. Plus keep in mind that a lot of people who have a hard time with tinnitus eventually habituate and are too busy resuming their lives that they don't bother to write their success stories. A huge amount of tinnitus sufferers go on to feel "better" in time. Your husband could be one of those people.

 

[william adams]

First thing I did was get a prescription for xanax to calm down and ambien to help with sleep. Have your MD do a full blood workup to see if their are any problems or vitamin difficiences and an MRI of the head to check for any problems in that area.The thing with T is there are so many possible causes and some of us still dont no the cause. Has he started any new medications or take alot of aspirin or pain relievers. WE all hope that our T goes away but in the long run try to keep him busy with things that can momentarily take his mind off the T and in time he will habituate to the sound and wont listen for it. give him hope that it may go away in time which it is possible. He should go for a hearing test and have his ears checked for wax buildup. You will learn alot about T on this forum from some very knowledgeable people and stay away from the doom and gloom post for that is not going to be helpful. T is one of the toughest things people learn to deal with but believe me it gets much much better with time.

 

[LoveMyHusband]

Sorry for the late replies, William and Zorro! I just can't say how much I appreciate the folks on this site who stop in to share knowledge and comforting words. We've had a couple of good days and now we seem to be having a couple of bad ones, but it is reassuring to recognize our patterns in your words and to know that things absolutely can get better.