Can you help a newby out

Discussion in 'Introduce Yourself' started by Jim McGory, Nov 22, 2013.

    1. Jim McGory

      Jim McGory Member

      Tinnitus Since:
      October 31, 2013
      Hi everyone...first for me on a blog. 3 weeks ago on Halloween I got out of the shower and thought I had water in my ear. Well it didn't go away and after 3 visits to my ENT, a MRI and CT Scan (all which showed nothing )my doctor who is head of USC told me today that I probably had a virus and like a thief in the night, came in and took my high frequency hearing away, gave me pulsatile tinnitus, and makes my voice echo in my head like a kazoo or broken speaker. He said it's most likely permanent and I'll need to learn to live with this. Well my friends, that is quite the punch to the gut, especially having young daughters and being in sales for a living. I am all ears (no pun) to anyones advice or insights. My doc says I will get use to this (wants to put me on Nortriptyline which he wants me to take 2 hours before bed. I am trying to get my arms around this so any help will be much appreciated.
    2. jes

      jes Member Benefactor

      copenhagen denmark
      Tinnitus Since:
      Hallo jim it looks like my story.A virus took my high frequency and i still hate that virus .In the beginning i could take the rope,but i have 5 children,so that was not possible.In the first half year I could not think of anything else than this.
      Bad sleep and this iiiiiiiiiiiiii.Our summercamping that used to be so nice was terrible.What made a change i bought a pair of tinnitus hearingad Widex zen 2 go.They make me able to Work and there are different programs on the remotecontrol.This portal has helped me a lot.I have learned to sleap with with naturel Things. I try to control my mind,every time i think of t I change to something positive.It is still a Little ugly,specially in the morning, I feel my head is some kind of Electric but there is no way back,and I take it day for day.My famely is a big help for me, I go and fix the house.As you can see, people are waiting for a cure or some kind of help.I think it would have been easier if we had waited a few years.I know the half of Copenhagen,but right now I dont talk so much.I hope one day to get free of
      this,but right now I have to do the best.My t changed a lot in the beginning,perhabs yours wil get better,I hope for you.
    3. Relic Hunter

      Relic Hunter Member Benefactor

      Tinnitus Since:
      Welcome. I often hesitate to respond to someone who has just come on board here and has recently developed tinnitus. I am often afraid that I might say something that would discourage them.

      I do not want to give anyone false hope but do not want to say either " learn to live with it " as most ENT's, Drs. do.
      Who is to say your tinnitus is permanent. Only time will tell that.

      Each person's response to tinnitus is different. As each person is different as well as the volume and sounds which we hear.

      What works for one in dealing with tinnitus will not work for the next. So I have learned to just say what I have tired that helps me and be open to all other ideas.

      At first I had a terrible time sleeping. I now take REMERON an antidepressant which helps. I also have a sound machine and a fan which provides relief. I also use hearing aid type maskers which generate white noise..

      My loss is also in the high Freq. range so I have a pair of hearing aids to compensate for this. They also have a channel with white noise.

      This forum is a great place. There are a lot of very knowledgeable people hear with a lot of experience with Tinnitus. One can find more up to date information on Tinnitus here than talking to any doctor.

      Dealing with tinnitus can be a very lonely thing. Family and friends will not understand unless they have it. However everyone here understands. We are all in the same boat.
      • Like Like x 2
    4. Riikka

      Riikka Member

      Tinnitus Since:
      Hello! Jes and Relic Hunter already gave some good advices to you. I don't have experience with pulsatile tinnitus myself, but there are some people on this forum who have and I think you could get some good ideas by reading their posts. At least with the "search"-button on the page you should be able to find those posts.

      As Relic Hunter said, your tinnitus is so recent, that there are still chances it won't be permanent. Also in the beginning the tinnitus sound seems more loud and intrusive, as it is a new sound and the brain hasn't got used to it yet. You will learn to live with it better and notice the sound less after a while.

      I think it is important you just try to continue your job and everything as before and also take time to relax, even though it can seem very difficult with the tinnitus. It helps to avoid complete silence and have some background sound for example at home, like Relic Hunter suggested. If you have great problems sleeping or with anxiety, it is worth trying some medication. Even though they don't influence the tinnitus itself, you might be able to deal with the sound better.
      • Like Like x 1
    5. Karen

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Tinnitus Since:
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Jim,

      I'm one of the people on this forum who has both high-pitched hissing/ringing and pulsatile tinnitus. Mine started suddenly, too, after taking a blood pressure drug. Prior to that, I had some hearing loss in my right ear, plus mild tinnitus that I hardly noticed. But when the pulsating and high-pitched ringing first started, it was very loud and very bad, so it created a lot of anxiety, stress, and worry for me. I ended up with adrenal fatigue, etc., as a result.

      Now, three years later, things have improved considerably. My tinnitus has settled down quite a bit, to a much more manageable level. The pulsatile tinnitus has not gone away, but it has settled down. (Like you, I had all the tests: MRI/MRA with contrast, CT scan, Doppler of carotid arteries, and they found nothing).

      I agree with the advice from some of the other folks (above), who suggested trying out hearing aids. You can try them on a 30-day free trial basis, and if they don't work, you can return them. For me, since mine is in only one ear, the hearing aids didn't work very well, but it might be a different story for you.

      You might want to check out, which is a website for people with pulsatile tinnitus. There, you'll find success stories of cured whooshers and other information that might be helpful.

      Some people who have pulsatile tinnitus have suggested going to a neurologist or vascular surgeon, but I myself haven't gone that route as yet. I'm still hoping that my pulsating will settle down or go away on its own.

      There is lots of great information available on this forum. Look around, and you'll find lots of reasons to be hopeful!

      Best wishes,
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    6. Lulubug69

      Lulubug69 Member

      Tinnitus Since:
      It's a tough thing to be told you have T. It seems so final and so permanent. Don't give up that this could pass. Everyone is different. Some of us are new to it, some are years into it. Believe that living with it IS possible. Forgetting that you have it is also possible. I'm having longer and longer moments that I forget about the T. I'm back to living my life. Some of us need medication to give us a little help to get through. It's common for Doctors to offer antidepressants or anti anxiety meds, even meds for sleep. Over time as we get a handle on things some wean off, others find it helps tremendously for long periods of time. You've come to right place, there is a wealth of knowledge here. People here are supportive and helpful, they know it, they live it and they get it.
      I'm grateful for them. Hang in there!
    7. Jim McGory

      Jim McGory Member

      Tinnitus Since:
      October 31, 2013
      Thanks everyone. The worst part for me, above and beyond my Dr. telling me this is most likely permanent, is the fact that I kind of get this reverberation in my head when I speak. At times in the first month, it's worse then other times, and the other night it felt like it me be going away which gave me some hope. I am lucky that I have no problem sleeping. I don't want to start taking drugs to sleep although I did take ambien three times the first week, so I started taking 5 MG of melatonin and read before I fall asleep. The pulsatile tinnitus is not 24/7 but the tinnitus is, and I believe that is the least bothersome of my traits. I am going to see another specialist and get his opinion and doing acupuncture and some quite prayer and hope that my pulsatile tinnitus stops, the reverb in my head goes away, and that the ringing gets softer or goes away in time. I would be happy with one on the three issues being gone! I really appreciate you all taking the time to offer your insights.

    8. Jim McGory

      Jim McGory Member

      Tinnitus Since:
      October 31, 2013
      Well, I guess it pays not to believe everything that your doctor tells you. My first specialist told me that my virus caused my pulsatile tinnitus, and the distortion I heard every time I spoke. He also told me he felt that they were permanent. It started on Halloween night and now in the first week of January, I am no longer getting the distortion in my head when I speak, and though I still have tinnitus, I don't have the sensation of hearing my heartbeat through my ear. Those two issues were the worst, and I am getting used to the tinnitus. I feel like I am "winning" in the sense that I got rid of those two symptoms. I have been getting electromagnetic acupuncture and who knows if that helped or it just got better on it's own. Thanks for all the info and kind words.
    9. Karen

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Tinnitus Since:
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      That is great news! I'm so glad to hear that your two worst symptoms went away --- the sound distortion and the pulsating. Sometimes the doctors don't really know, either, so we must never give up hope.

      You're so lucky to have gotten rid of those two symptoms, and maybe in time the tinnitus will get a lot better, too.

      So glad to hear you're doing better. Thanks for the update!
    10. Miked

      Miked Member Benefactor

      Tinnitus Since:
      Hi. I just started with the distortion effect. It started immediately after the ENT cleaned wax out of my ear. I have had tinnitus for a few years, but the distortion is new. It has been about two weeks now. The dr has ordered a head MRI , but I don't expect any answers. Any inspiration?
    11. Mark McDill

      Mark McDill Member Benefactor

      Papillion, NE
      Tinnitus Since:
      Cause of Tinnitus:
      Likely stress, anxiety, an antibiotic and nsaids
      Welcome to the group! I've had severe and invasive T for a year now and have just recently joined this group -- smart move, there are a good 'bunch of bananas' here; I wished I'd found it soon after my T affliction began. I went through some real dark days at the onset (and months into) the advent of my T. Had I joined a group like this, perhaps my anxiety levels would have gone down substantially (anxiety is a critical factor with T sufferers).
      Unfortunately you have learned (the hard way) the medical community is basically dead on this issue -- there's no pill and no surgery (no money to be made) and it's WAY subjective (hard to get real scientific data, although they are making great progress). So, basically you get an office call and the 'learn to live with it' answer (the quintessential and ubiquitous attitude and answer from the medical community). I have to give them credit for their uniformity on the topic; however, I choose give it the respect due (very little). Discovering their attitude caused my anxiety to shoot through the roof; there was an echo in my head ' no cure, no cure, no cure...', and then I paid the fee for the office visit and they said 'have a nice day'. As you stated, a gut punch indeed!

      Tinnitus is a hearing problem (with a psychological/behavioral component -- and, no, I'm not implying that T sufferers are psycho). Therefore, see an audiologist (especially one well versed/trained to deal with T). Also, I've heard great things about Cognitive Behavioral Therapy (CBT); essentially, you retrain the brain to deal with the new (and foreign/aberrant) neural-network (neuroplasticity) and the associated anxiety that is fueling the negative feedback loop (that is your T). T is one squirrely, and annoying, bugger indeed! However, even though you may feel overwhelmed right now, you MUST know that T is very manageable (on all levels of your life); you don't need to be discouraged.

      Since you are new to T, I feel compelled to warn you about the myriad snake-oil products (one of the cruelest endeavors on this planet). Some of them sound so reasonable and are usually based in an element of truth; always remember, there are millions of T sufferers so if someone has come up with a cure, why aren't there millions of people lined up at their door (duh!). I'm not saying you will get pulled into these schemes (not insulting you) just letting you know there are marketeers out there more than willing to cash in on desperate situations -- T is one of those situations.

      In my limited research, I discovered that T finds its pathology within the following components; outer ear, inner ear (cochlea), auditory nerve (physical data to electrical impulses), limbic system (emotional seed), memory, and your central autonomic nervous system. Disrupt/frustrate T in any of these areas and you can began to take it down; maybe not get rid of it entirely; but take it down to manageable (even laughable) levels. If you're curious I can expound more.

      A primary offender, if not THE primary offender, for T sufferers is the anxiety component; that's a tough one. Anxiety is a killer. I found that I can get stressed about my stress levels (yikes!). For someone like me (high strung, high energy, idealistic) I can achieve anxiety heights (tongue in cheek) from which I can observe star formations better than Hubble.

      I'm not saying 'just relax' and your T will go away (that's silliness and is no more then the medical community is telling you); I am convinced the anxiety component is a big player in managing your T; but it takes a lot of practice.

      At the onset, I got hooked up with what I'm finding out (now) to be are state of the art hearing aids with white noise generators from Nebraska Hearing Instruments (Omaha, NE). At first, my T was so loud (70+ db that sounded like a dental tool in the center of my head) that the max 60 db white noise couldn't quite cut it; however, over time we have brought it way down and have changed its nature to a 'hiss' vice a dental tool. The white noise really helped get my anxiety down (gave me a sense of control and precious sleep at night) and it really helped my brain habituate -- they were a God send!

      Sorry if this is too long; I just remember the days when I first started out (I was desperate/dark) and it's my hope I can help someone avert some of the pitfalls I fell into (unnecessary, debilitating).

      T is manageable, your life can and WILL be normal again...

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