A Living Nightmare... The Never Ending Scream in My Head.

[ManApart]

Hi,

My name is Rod. First I want to say thanks for all of the people on this forum for sharing your stories. I read so much of the forum looking for answers and the only one that exist is there is no cure. I have researched this to death and probably read too much about it. Its very difficult to just go about my day normally though. I haven't habituated to anything. I doubt I ever will. I can't see how its possible just by the sheer volume of the scream in my head.

I have severe tinnitus. The sound originates from the left/center of my head. There are two sounds simultaneously. A ringing in the center of my brain and a unbearable screech from my left ear. I know there is no cure. I have tried everything, maybe to my detriment. I honestly have no idea how I obtained it. I woke up one day and it was just there. There worse day of my life. It could be a variety of things such as medications, high blood pressure or the occasional/seldom listening to loud music the radio. The sound is constant as you know. I had to quit my job. I got broke up with my finance because I fell into a deep depression and could no longer make her happy. Very painful. I loved her deeply. Still do. I moved back with my parents. I am very much compromised emotionally and mentally. My entire life has now become this sound. This paralyzing scream. When I try to drown it out or mask it it seems to increase itself to override whatever sound therapy I try to use. I guess im partly hyperacusis as well. I dunno. The masking sounds dont hurt my ears it just makes my tinnitus louder. So im stuck between silence and a small amount of noise. I feel a very moderate amount of pressure in the center of my head and always have a headache, none of which is related to any head trauma, congestion or sinus.

My depression and anxiety is worse than ever. I am suicidal. I am at my wits end. I have very little support. Its not something people can see like a broken leg or cancer. I have been to doctors and they have no answers. They say I will eventually get used to it. It like telling someone who is on fire, well we don't have any water but just try not to think about burning, hang in there and stay strong.

I have been currently off anti depressants for a couple months. I take clonazempam for anxiety and it marginally helps me sleep but sleeping is extremely difficult. I am suffering on a daily basis beyond anything I could ever imagine and I honestly feel im slowly losing my sanity. But to see those who are able to go on and manage and live through it gives me a bit of hope maybe I can habituate and somehow become strong enough to survive and overcome this. I fear time is not on my side. And I just can't take it anymore. It has taken every ounce of my strength, faith, and soul just to hang on. My life will never be the same and I'm losing what little hope I have left.

 

[Samantha R]

@ManApart
I am so sorry to hear you are suffering so badly.
Many people here can relate to your experience, you are not alone and will get great support here.
You haven't had tinnitus for a long time, things will get easier in time, so it's vital to find a way to cope right now.
Your tinnitus sounds like it is reactive, as you mention it is reacting to the masking noises (in that it is getting louder in response to sound). Do you have pain as well?
If you are not sleeping well, then this is the first thing I would work at rectifying. You mention Clonazepam. As this is a benzodiazepine, it should only be taken short term as you can build up tolerance to it and have to keep taking higher doses to get the same effect. This may already be happening to you as you mention it's not helping much with sleep anymore.
I personally used Remeron (Mirtazapine). I only took 15 mg but the first night I took it, I had the best night sleep I'd had in weeks.
Melatonin is also another option, you could speak to your doctor further about this.
I try to keep busy and notice as time goes on, I have longer and longer periods of time where I don't notice or think about the tinnitus. I think I am in the early stages of habituation.... at least I hope so.
Have you had any investigative tests done in regards to the pressure in your head and the headaches? Or do you think this could be related to stress and anxiety?
We are all here for you Rod.
Sam.

 

[Alue]

Sounds a little similar to my tinnitus. Originating from the brain / back of the head.
I agree with Samantha, sleep is the most important thing for you to be getting right now. Lack of sleep makes the tinnitus worse and harder to cope with.

 

[MikeL1972]

Hi ManApart,

Sorry to learn of this situation you are in.

First, let's go the clinical route. Have you been seen by an ENT? Has your hearing been evaluated? Have you had an MRI study done of the affected area?

 

[GregCA]

Like @MikeL1972 said, what's the medical picture?
What have you done/checked/investigated/ruled out?

 

[ManApart]

@Samantha R
It's torture. I'm still very much in shock and disbelief. It is literally the worse thing that has ever happened in my life and I don't know how I or anyone can live with this. My only way to cope is to try to chemically induce myself to sleep half of the day and try to mask the sound as best I can. Im trying to keep my mind busy but it just at this stage seems impossible. I can't concentrate on movies, or watching sports, reading, or spending time with anyone. In the course of 2 months my life just froze in place because of this. The only pain I have is splitting headaches. The tinnitus seems as if it wont allow me to mask or drown it out. And it changes pitch and intensity when I try.

I have been on clonazepam for probably 12 years and honestly at this point it is the only thing that has marginally helped me from going completely insane. I have not had to increase or decrease and I have never been addicted to it. Melatonin had absolutely no affect on me at all. I was on Seroquel which usually knocks me out in 20 mins and I still had difficulty sleeping. Im going to talk to my doctor about a strong sleep aid. I have to be able to sleep properly and not in 30-45 minute increments. I think the headaches are due to just the sheer volume and intensity of this sound. It is blaring.

@MikeL1972 , @GregCA

So far I have seen a ent, audiologist, and had Xrays. I don't have insurance so the MRI is going to take awhile as im on a waiting list. I went through a regiment of medrol steriods. That rules out a viral infection. No signs of head trauma, wax build up or fluid. And no significant hearing loss. I dont listen to loud music or go to concerts. Im not exposed to loud noises for long periods of time. So I feel it has to maybe be due to my physical health problems as im diabetic and have hypertension. As for stress and anxiety well, they may be a culprit as well. When something like this happens to me I try to attack it. And I have taken virtually everything I have researched. Gingko, Lipoflavanoid, Magnesium, Zinc, B vitamins, Gaba, Seroquel, Gabapentin, ring relief ear drops, exercise, low sodium and no caffeine diet, and currently under counselling. I started reading about a lot of other expensive treatments like neuromonics and hearing aids and I just broke down the other day and gave up. This is it, this is what it is. This is my new life now.

I honestly don't know how you guys get through it. I am hoping I can habituate somehow soon. It seems like the only thing that helps. But it seems each day gets harder and harder and I slowly feel myself slipping away.

 

[Samantha R]

@ManApart
Yes, definitely talk to your doctor about sleeping help. I started to turn the corner when I got some sleep.
My tinnitus started a month after my twins were born so even when I did finally fall asleep, I would be woken by one of the babies and not be able to go back to sleep. It was a nightmare until I got myself on Remeron. I would still wake up when the babies cried, but could easily go back to sleep.
I believe hypertension and diabetes have a link to tinnitus. Is your diabetes well controlled? You should explore both these issues further.
It is really tough. I still don't like hearing my tinnitus and use masking at night.... however I am needing to do this less and less now, a sign that I am making some progress.
Also any changes to your diet or supplements takes time to have an effect, so try to be patient before you assess if it's helping or not.

 

[GregCA]

I honestly don't know how you guys get through it. I am hoping I can habituate somehow soon. It seems like the only thing that helps. But it seems each day gets harder and harder and I slowly feel myself slipping away.

Don't look at us like we're super heroes. We struggle just like you do. It's very difficult to deal with it, and each of us tries to get by and to the best we can with what we're dealt.
I haven't habituated at all, and it's been almost a year. Not sure habituation is possible when T is very intrusive. Still, we must face every day with courage and find shreds of quality of life wherever we can.

You do list quite a few supplements and meds that you've tried, yet you haven't had T for that long (a few weeks only). I'm not sure it's such a great idea to mix everything as a treatment, because you won't know what worked and what didn't. Try to be a bit more analytical in your trial and error process.

Also, use the diagnosis flow chart to guide your debugging efforts.

Your T is still quite recent. Make it a priority to try to get some sleep: it will help in many different ways.

 

[Michael Sullivan]

I'm 18, and my tinnitus has been going on since January. I recently noticed it more as of yesterday. I have normal hearing so it's a mystery. It seems to me that Tinitus is the worst thing known to man. I personally rather have cancer than this. I'm in the same boat as you @ManApart . I'm depressed Constantly. I stay at home. I message my friends sometimes and ask them to pray for me. I don't know if God will help, he might, miracles can happen if you have faith. I'll pray for you. My Tinnitus is on my left side of my head to left ear. I wanted such a great life, but I might never escape this horrible, unbearable condition. I'm too young to get this. I was a senior and so close to graduating but now I'm out of school going to therapy. We are in this together.

 

[ManApart]

@GregCA
Yeah, I think you may be right unfortunately. I may never habituate to this. Hard to get used to a fire alarm going off in your head. Ive had this beast since early January, so almost 2 months. Something this intrusive and insidious quickly became unbearable and debilitating to me to the point where I had to do everything I could at the time to save my job and my relationship. And ultimately probably my life. So I spent hours each day researching. Seen my doctor, a ent, and got tests done and took a bunch of supplements and overhauled my diet. I was desperate because this seemed so unacceptable to me. I'm not looking for superheroes, just support from people who relate and somehow can find a reason to wake up with this every day and function.

@Michael Sullivan
I can't think of very many things I deem worse than this other than waking up one day blind all of a sudden. I'm sorry that you have to experience this at such a young age. I had to quit my job of 9 years, so I can imagine how hard it was to leave school. There is nothing I can offer you, no pep talk, and no hopeful words. In the span of literally weeks I went from being an outgoing person with a decent job, fiancee, and was reasonably content in life despite all of my existing health issues. Once this happened, my world turned upside down. I know I could probably be handling this better but its just upsetting and devastating to me. And my lack of mental stability doesn't allow me to be very positive. Ive suffered from depression and anxiety for a long time.

What little faith I had in God may have evaporated. I don't believe in miracles. The only thing I can say is to attack this will everything you have. Do whatever it takes even if its to just reduce the tinnitus to a level where you can at least function and have some relief. Fight for that. Get a lot of sleep. Take care of your ears. Be vigilante with your doctors. See if you can pinpoint the culprit reason why this is happening. And since you are a young man of faith, don't lose that. Keep praying and believing. Maybe it will help. I wish you the best.

 

[GregCA]

I'm not looking for superheroes, just support from people who relate and somehow can find a reason to wake up with this every day and function.

You will certainly find a few people who relate in here.
I am glad you are driving your medical efforts - that's already a positive step. Staying informed is also a good thing. There are studies and trials happening that you may want to know about. ClinicalTrials.gov is a good resource for the latter, and pubmed for the former.
With time, T is also likely to change. Sometimes for the better, but not always.
Good luck, and take care!

 

[TroyW]

Thats insane. You guys are at the point I am scared of reaching. Dropping out of school, quitting your job, and losing a girlfriend. I hope you guys find some sort of answers/relief.

 

[ManApart]

@TroyW

Didn't have a choice but my circumstance and ability to cope is different.

 

[slipware]

@ManApart sorry about your plight, all of us are here to listen and support as best we can. We are in this together.

Masking. I am unable to mask my horrendous noise, I have reactive tinnitus. Do not try to mask if that's your case. I will play a gentle sea breaking on the beach CD for relaxing to, low volume, no earbuds, just a gentle background.
You may think you can't live with this, you CAN! We all are. Nobody says it's easy, it isn't and some days are worse than others. Have you taken prednisone? It's often prescribed at the beginning.

Be positive as best you can.

 

[ManApart]

@slipware
I really cant not mask it. Its too piercing. I dont drown it out with loud sounds, I try to just have several low volume things on at the same time. The tv, radio, fan, and play like 4 different sound therapy stuff on youtube at the same time. Just to have something else I could focus on.

I don't know if I can live with this. Im not sure im strong enough. I dont think I have such a passion for life or desire to survive where I feel all of this suffering is justified. Because that is what this is, just pure suffering. But like I said, im attacking it and taking it one day at a time. Time will tell. People say it gets easier, but each day seems to just get worse.

I havent taken prednisone, i was given medrol and it didnt work. Im not a positive person or a negative person. Im a realist. And I know I really messed up bad.

 

[volsung37]

You are very early into this. Eventually acceptance will come when you stop fighting. Trying lots of supplements and giving up things we love like alcohol and caffeine seems like a good idea at first but in end we realise that these small delights are what makes life worth living. Sleep is paramount. That is the first step to getting your life back.

 

[ManApart]

@volsung37
fighting what? I can't fight it. Im not really. I dont have to accept it to come to terms with the fact this is my new life and I will have to find a way to cope and live with it. Salt and caffeine I can attest causes my T to go into overdrive. I never dranked and giving up coffee is a small sacrifice. I think i really need to focus on getting better sleep. It seems everyone is signaling that out as something essential. But its so hard. When I lay down is when its most intrusive. You would think serequel, benadryl, and clonazepam would knock me out but im wide awake 24/7. Gonna talk to my doctor about it.

 

[volsung37]

@ManApart
You have said you are attacking it. The more resistance you give to this thing the more powerful it becomes. However it is almost impossible to accept at the start. Its good you have found something that affects your tinnitus and can reduce that. I have found very little that affects my noises so there's not much point in depriving myself. I couldn't sleep properly for 6 months. Maybe 1 or 2 hours a night sometimes. Phenergan helped me catch up. I occasionally took diazepam and temazepam when needed. Now the noises are still loud but I sleep OK. I find focusing on a task completely helps drown my perception of the sounds. Walking outside in the city or on a windy day can also mask the sounds a bit and give a sense of refreshment. Good luck.

 

[MrBonk]

Lack of sleep, and lack of time are your enemy.

Quitting your job I think was a bad idea too. If I didn't have my job, I think I would be so much worse off.

 

[ManApart]

@volsung37
Attacking it in the content of trying to find out how this happened and what I can do to ease my suffering. But as far as being in a complete panic and denial about it, i think im pass that point. Im not resisting it, but i havent embraced it either. Im kind of in giving up mode. I take about 3 clonazepam a day. Im trying not to take up drinking. My tinnitus is sort of reactive I guess cos, running water, the sound of the wind, the sound of the plane and cars, just makes it worse.

@MrBonk
I had no choice. I could no longer do my job effectively. I tried and stayed as long as I could without taking to many days off but people do not care if your sick, they only care if you get the job done. I know a lot of people's tinnitus is different and people can work and use it as a distraction. But I couldnt focus or concentrate or hear people talking to me clearly. So I had to quit or I was going to be fired anyway. Im gonna focus on sleeping the best I can.

 

[Alue]

Lack of sleep, and lack of time are your enemy.

Quitting your job I think was a bad idea too. If I didn't have my job, I think I would be so much worse off.

I agree. I suffer through my job as I've made apparent here on this forum. I'm exposed to moderately loud to loud noises most of the day and protect my hearing as much as I can, but I can't afford to quit, and to be honest I don't know if I'd be better off not working. I've been long term unemployed before and it sucks. All that time with nothing to do but obsess about the sound in your head isn't good.

 

[ManApart]

@Alue
your all better and stronger men and women than me. I could not work with a fire alarm going off in my head. Tinnitus is undoubtley the most difficult and traumatic thing that has ever happened to me and I find it completely disabling. I tried my best but under the circumstances and I couldn't do my job effectively. I been there 9 years, it was one of the hardest decisions Ive ever made, and I dont regret it because getting fired would have been worse. My job is stressful and without the added stress I can manage better. All my focus have to be on coping with this because my life is really at stake and time is definitely my enemy.

 

[Michael Sullivan]

@ManApart

I'm going to try hyperbaric oxygen therapy and see if it helps. They say after a acute noise exposure the hair cells don't get as much oxygen as they used to. This increases it big time. It's supposed to be used within 3 months of the onset of Tinnitus.

This article also mentions that 50% found a reduction in T.

Even for some it went away.

Just something for you to consider.

https://www.tinnitusformula.com/library/hyperbaric-oxygen-therapy-for-tinnitus/

 

[ManApart]

@Michael Sullivan
I wish I could try it but living is expensive especially when your sick and I can't afford to buy back my health and peace. If your working middle class your pretty much on your own if doctors and insurance companies can't make a profit.

 

[slipware]

@Michael Sullivan
I wish I could try it but living is expensive especially when your sick and I can't afford to buy back my health and peace. If your working middle class your pretty much on your own if doctors and insurance companies can't make a profit.

This make me realise how very,VERY fortunate we are to have our NHS. It may not be perfect, as it's overutilised, and by some, abused, but it's truly awesome.

 

[Parfait]

I have exactly the same symptoms and I can fully identify with what you are going through. The worst part is trying to relax of an evening. I used to love reading and watching telly or just plain lying in bed and listening to the silence and giving myself the space to let my thoughts meander. But the tinnitus hijacks all of those activities and wrecks them like a fulminant fungus.

 

[Paul10]

I had to check myself into an emergency room, the big 'S' word was in my mind. I suffer from depression and anxiety. You CAN get better, but you must first THINK you can get better. I didn't believe this when people said it to me, I thought 'my T is just so much different to everyone elses'. You need to AVOID negative words. You need to not think about the future too much. You mentioned 'insurance companies' so I'm presuming you're in America. The American health service can be wonderful but for T, I've been lucky to live in a country with a health service as I've been treated very well thus far.

There seems to be too much of a drug-focus on T in America (I could be wrong). Please understand that throwing drugs at this is not going to help long-term; you need to find a hearing therapist/audiologist who specialises in T. I don't know how it works in America, but I would hope this can be offered through a hospital. That's where I go in my country. The internet is good for finding camaraderie, but much of the information is out-dated, not applicable to you, or simply not true. You need a professional to find the route cause of your T and the best treatment path to take. There IS help available. You need to get out of the mindset of 'this will never get better', trust me, I know it's easier said than done, but you need to tell yourself this. Look up Julian Cowan Hill's videos on YouTube. Take a shower whenever you feel very bad, if you can drive, go for a drive on your own. Find a professional to guide you through what treatment is best for you. Me? I'm on Zoloft, I see a hospital-based T-specialist who knows the condition inside out, I see a social worker also. I also have Valium as a back-up, but I don't take it much now (touch wood). In the beginning, it saved me. I also take an anti-anxiety. These are all monitored by my doctor, who works with my hearing therapist. It's all linked together over here. Avoid negative threads and negative comments.

Read @billie48 's success story;
https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

Read it over and over. I would also advise something which may seem small, but change your display photo. Change it to something positive. Make TT a POSITIVE place for you. I know this is all easier said than done, but you are not the weakest person to ever overcome T, there are people in worst places that have overcame it. You WILL (not can, WILL) be one of those people. You will find positive people here, communicate with them, be positive together. Once you've done this, I wouldn't look too much around TT, as you can be overwhelmed and brought to a bad place by information which does not apply to YOU specifically. T is so unique, don't think you have to be like someone else or have their experiences.

PM me if you ever want to talk. I'm new to this also, but I know the difference professional T-specialist help can make.