Tinnitus ruining my life

Discussion in 'Support' started by heartbroken, Aug 10, 2013.

tinnitus forum
    1. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      my name is lisa. it started with just one ear...not too bad at first though it gave me headaches. since march of this year, this has developed into full blown pulsatile tinnitus. I have had to quit my job which I only started 2 months prior. I suffer from hellish headaches and worst of the worst now is that I am unable to sleep. it took over 10 medical appointments before it was diagnosed although I had self diagnosed myself by searching the web about the symptoms. in june month, there were a few days where I would not able to sleep at all literally watching each hour until morning came. I was given anti depressants, told that nothing can be done, that I have to live with it....at this point, I could learn to live with the noise since I started using white noise, any kind of noise to mask the horrific sound.. but what was ruining my health was the lack of sleep. I became very weak in my body where I could not even hold a cup of tea. the pulsing in my ear was so loud, it vibrated my ear and it hurt. in my head itself it was so loud that I felt I would go crazy. I went from being a strong grounded Christian to losing all faith and hope. in july I attempted suicide because of all the hopelessness and darkness. see, I developed another hellish medical condition call vulvodynia just one year ago. this too is another one where there is no cure just suffering and pain. I have tried everything I could. for the tinnitus I try different teas, I heard cherry tart juice is good. its like my body has forgotten how to sleep. at night I am wide awake at all hours. I travelled to Trinidad recently where I saw a doctor for the headaches and though he too could not help, the meds he gave me help me to get atleast 4 hours sleep now. I hate being on sleeping pills but its either that or I don't sleep. I still hope that someday I would learn to sleep again. until then I have to take the chance of ruining organs with all these pills so that I can get some sleep.
       
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    2. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Lisa,

      I'm so sorry you're having such a terrible time, and my heart goes out to you. I have pulsating tinnitus, too, in my right ear only. Mine started suddenly, after taking blood pressure medicine for the first time. I've had this condition for about 3 1/2 years now, and still haven't found the cause.

      You mentioned that you have very bad headaches; did the headaches start around the same time as the pulsating? Some of the people I've been in contact with who have pulsatile tinnitus have found they have a condition called Benign Intracranial Hypertension. It is caused by excess fluid buildup in the spine/brain, and if diagnosed, there are several possible treatments for it. You might want to research it online, to see if the symptoms sound like yours.

      I agree that sleep is a problem with pulsatile tinnitus. It has taken me several years to begin sleeping again, and I still have some sleepless nights, but it is much improved. I don't take prescription sleep aids; right now, I am taking magnesium tablets, along with a sleep aid that contains melatonin. Both of these supplements are supposed to be good for tinnitus, and I think I have noticed a difference since I have been taking them. Right now, the pills you are taking are probably a good idea, but later on, you might try switching to a natural supplement like melatonin for sleep.

      Please don't give up! Since you've only had this condition since March 2013, it is possible that things will improve over time. In the meantime, getting some sleep will help you feel better about all of it.

      I hope you'll write back, and let me know how you are doing. You're going to be all right; it just takes time. You've come to the right place here at Tinnitus Talk. I'm very glad you joined us!
       
      • Like Like x 2
    3. Per

      Per Member

      Tinnitus Since:
      06/2013
      @heartbroken

      Just wanted to join Karen in her response. Hang in there. I just experienced something really negative today, my T changed all of a sudden so now I have several sounds going on at the same time, and it's loud. Don't give up heartbroken, we need to stick together trough this. I too use sleep medication. Way too much I presume. I can relate to what you are writing about insomnia, I've had that since I was a kid and after I got T&H it isn't any easier of course. When you lay awake think of all of us that also struggle with sleep. We are many.
       
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    4. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      you will relearn how to sleep but it takes time.
      I Googled vulvodynia since I thought I might get that too with my luck...I guess that's one thing I surely wont get.
       
    5. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      Sorry to hear.

      I would recommend that you not give up hope, continue to hunt down a *GOOD* audiologist/ENT - it takes time and you may have to move through quite a few of them till' you find a good one, but an empathetic doctor who will be willing to work with you on your condition will be of great assistance, and I talk from experience. I now have an ENT and audiologist who are very up to date and willing to help me through this and it has made the load I carry much easier.

      Have you had any MRI's, hearing tests, Otoacoustic emission testing or tympanic evaluations done? If not, get them done as soon as you can because they will give you a good base to work from.

      I'm not a big believer in many of the prescription medications that people with tinnitus/hyperacusus/etc are given but, you do sound like you would benefit from something like gabapentin (supposed to be good for tinnitus, and chronic pain so it might help with your other issue!) - but this is something you woul;d need to discuss with an ENT/another specialist willing to put you on such a regimin. I don't have much knowledge on how it works but I know I've seen a few others on the board that have been using a combination of benzos, gabapentin and what not, so hopefully they will be able to provide some guidance.

      There are many more people more versed in the topic of pulsatile tinnitus so I'll let them chime in, but I do hope things start to get better! Don't give up hope, keep fighting no matter how difficult it may seem - you'd be surprised how resiliant the body/brain really is and how much things can change for the better just given time alone!
       
    6. EddyLee
      Tolerant

      EddyLee Member

      Tinnitus Since:
      2013
      Hi Lisa, please don't believe the bullshit that nothing can be done about your tinnitus. All the doctors i met told me the same shit except one good doctor who are willing to investigate and try things to improve my T.

      Try all the test you could, even the vitamin test particularly vitamin B12 and D. And try to cure any chronic illness you have had before. I had chronic GERD (acid reflux) problem for years before i got tinnitus. After i got tinnitus i try everything to take care of my GERD and able to almost cure it. And then i was found to be low on both vitamin B and D too. Finally after few months of getting rid my GERD and supplementing with vitamins B12 & D and with regular exercise my T has reduced 70-80% now.
       
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    7. Mahdi
      No Mood

      Mahdi Member

      Location:
      Tehran
      Tinnitus Since:
      02/2001
      Cause of Tinnitus:
      Gunshot
      Lisa! just keep your cool and don't lose it. I've been suffering from a very horrible tinnitus 12 years and a half. I'm peace[less], sleepless, jobless, penniless, helpless, but still little hopeful and not completely hopeless.
       
      • Like Like x 1
    8. laurarose

      laurarose Member

      Tinnitus Since:
      12/2011
      Hi Lisa;
      First of all, I had vulvodynia for about 12 years and now it is gone. I now started with tinnitus about 1-1/2 years ago and thought to myself why do I keep getting only the strange conditions? When I got vulvodynia it didn't have a name! I know exactly what you are going thru with it! There are organizations you can join that can help you with this disorder. The tinnitus is new for me but I'm going crazy with it just like I did with the vulvodynia. You will get relief from the V because mine was so bad and it went away finally. I was told from my ENT that my tinnitus is caused by stress. I believe it too! All the tests for hearing and pressure came out fine. He said to me that some people get headaches from stress, others get stomache problems. My stress manifests in my ears and jaw (tmj). It's all related. Calm down and take a deep breath. You are not alone.
       
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    9. Per

      Per Member

      Tinnitus Since:
      06/2013
      @laurarose,

      My ENT hearing test was also fine so I concluded with stress related T, but then I started investigating it further and now I'm not confident in that explanation at all. A "normal" hearing test doesn't check all frequencies. Here's an article on the topic of hidden hearing loss. http://www.tinnitus.org.uk/tinnitus-and-hidden-hearing-loss
       
    10. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      oh my goodness. I didn't think I'd come across someone who experience both V and PT! I myself always ask why I get the conditions that no one knows about! My family always think something is wrong with me! I am so sorry to hear you are facing this, yet I am happy to connect with someone who can totally understand the hell I face in my head and down there! It took 6 months before the doctor diagnosed the V but from surfing the web, I found out about it, something no one in my family ever heard of! I hope mine goes away too though I am grateful it it not as bad as it was in the beginning. Now I have PT to keep me occupied!
       
    11. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      I was taking melatonin too, but it looks like it derailed my sleep pattern even more. I am now on prescribed sleeping pills, anti depressant and anti biotics for an infection that was possibly caused by all the other pills! I have tried the natural supplements, but when I lie there with eyes wide open knowing I want to sleep, hour after hour, there's a desperate hopelessness that takes over that is too much for me to handle. And seeing that attempted suicide is in my files, I can't afford to be pushed beyond so for now I just have to take the benzodiazepines. I will research the condition you mentioned. right now, all the help I can get I'm grateful as I just want my life back. Thank you for your support.
       
    12. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      I am glad you are not completely hopeless. hope it changes for you soon.
       
    13. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      I'm so glad that I found this site. No one around me can understand what this is like since they have never had or even heard of PT...but at least you do...thank you all for words of support, its very helpful.
       
      • Like Like x 1
    14. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey heartbroken, welcome to the forum.
      First few months are tough, no doubt. I am struggling with T that came on suddenly, following a transatlantic plane flight. The T then triggered a panic reaction, which made life really, really tough, but I am working on it and things do better. I know nothing about vulvodynia but here are a couple of quick things about T:

      1. You really need to get the sleep and anxiety issues under control first and foremost. Do not be afraid to use meds. Just make sure you are under the care of good mental health professionals (psychiatrist and psychologist, preferably trained in cognitive behavioral therapy.). T is as much as brain disorder as an ear disorder.

      2. Dont believe the ENTs when they tell you there is no hope and nothing they can do. They just mean there isn't some magic pill or operation they can give you. But there ARE things like tinnitus retraining therapy, masking devices that dim the noise of the T, alternative treatments like acupuncture (which may or may not work), and other treatments on the horizon. Find a GOOD audiologist. The AuDs are more helpful than the doctors.

      3. If you haven't already, read this post by @ShiningStar, which I believe is in the Introduce Yourself forum. It really helped me be strong and put things in perspective.
      https://www.tinnitustalk.com/threads/sharing-my-story-to-give-some-hope-to-others.1814/
       
      • Like Like x 2
    15. hare31337

      hare31337 Guest

      Hi heartbroken.
      Your story is so similar to my partner's. He developed "regular" tinnitus 16 years ago. He was managing it okay after the first three or four years passed. Then he developed chronic pelvic pain. He went to a myriad of doctors until he found Dr. Wise, and the book Headache in the Pelvis. That and these horrible sounding procedures and he had that under control.

      Then about 6 months into our relationship he went to an acupuncturist who put a needle in/on/near his ear. From that moment on his regular T escalated to unheard before levels. He was beside himself. THEN the worst of the worst happened, the PT. He's effectively disabled now. The hyperacusis is worse than ever. The PT keeps in from working. He left his good paying job, and we moved to Hawai'i. From the outside it would seem that he's fine. From the inside, he's losing it. I'm trying the best I can to help, but there are times when I make mistakes.

      And I can't make mistakes. A mistake stresses him out which makes everything worse. I'm going crazy because he's shutting me off right now over a mistake I made. :( I just don't know what to do.

      nikki
       
    16. heartbroken

      heartbroken Member

      Tinnitus Since:
      march 2013
      hi nikki...sorry to hear about your situation. I know its sorta cliché when someone else says 'I know what you are going through' because none of us really and truly understand since each of us handle things differently and are affected in different levels... I can tell you though I know what it feels like to be so heartbroken and discouraged..sometimes life could be so cruel and when you have no control over things, it renders one hopeless. I have been struggling with one health issue or the other since I turned 30. its been downhill from there. now at the age of almost 42, I struggle with who I am as a woman if I could call myself that. see I cannot have children, I suffer with a damage disc in my spine that keeps me in pain 24 hours a day. I can't sit, stand or walk for long..because of this I have no social life...hence no friends. and I cannot work. I started experiencing vulvoydynia 2 years ago and still suffer a lot though I am thankful its not as bad as it was at the beginning..intimacy with my husband is a challenge..so that's why I say I don't know if I can call myself a woman..can't have children, the one thing women can do and I can't satisify my husband sexually..on top of all this, started suffering with tinnitus this year..i know that its hard on you but I can understand your partner's frustration as well..i know what its like to look well put together outside but on the inside you are just ripping apart because of what you are going through. I can tell you this much, don't try too hard and don't stop trying. everyday, and I mean everyday I wonder why my husband does not leave me... I mean, he has a wife that can't bear children, can't work, can't do things like regular people, can't have intimacy..i mean he has every reason to leave...its very hard on him as you can imagine and I am 100% sure he gets tired, frustrated and fed up of it all...but I would like to think that his love for me must be greater and stronger that all the crap we go through.. tomorrow would make 17 years we are married and though I wish a lot of things were different, I am just thankful he is still here..your partner may be going through a lot of frustration inside and does not know how to handle it all so he snaps at you..ofcourse that's not fair to you either, but you alone know where your heart is so if its worth it to you, then hang in there and don't give up...one attitude I have tried to adapt, is that this is the new normal...its hard to accept things that we cannot change, but we must in order to survive otherwise hopelessness would destroy the little we have...stay strong...
       
    17. Meestijn
      Balanced

      Meestijn Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      08/2013
      Hi Heartbroken,

      Your story is heart breaking and puts my own T in perspective.

      Don't give up as many have mentioned before!
      Nothing to add to the good advices already given, only want to give you a hug!

      Hang in there.
       
      • Like Like x 1
    18. Ace

      Ace Guest

      Hi Heartbroken

      I do pity your situation. I have a similar condition to yours. I have experienced sleepless nights with the annoying ringing in my ears. Later on I discovered that when I stressed less and accepted the annoyance, the ringing would become so much softer. I tried some retarded meditation techniques such as qi gong and yoga and some herbal medicines such as "Neurozeal Natural Relief" that helped cure tinnitus. I know the meditation thing is hilarious and a joke to you, but believe me or not the above procedures lowered both my stress and the ringing sound. I could occasionally get better sleep. After around half a year, I could finally manage 5-8 hours of sleep daily.

      That is my story. I am here to conclude that regardless of the situation, you must stay strong. Believe in yourself!

      Ace
       
      • Like Like x 1
    19. jewellanne1010

      jewellanne1010 Member

      Tinnitus Since:
      06/1999
      Hugs and prayers
       
      • Like Like x 2
    20. billie48
      Sunshine

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Location:
      Vancouver, Canada
      Tinnitus Since:
      03/2009
      Welcome to the board, Hearbroken. Though not all of us have the exact challenges as yours, we do understand the struggle with intrusive tinnitus and have true empathy for you. Most of us went through the nightmare too when tinnitus hit. Some of us have PT, others have different forms of unbearable T. For me I have ultra high pitch loud T. It is such an unearthly high pitch that is like a dentist drill x 20 times the pitch. Such alien sound horrified me to no end at the start. How does one stand such a horrible sound 7/24 for life?

      Then severe hyperacusis joined in the horror show. It turned all normal sounds glassy & piercingly hurtful as if scratching glass with metal. It was like I was being drilled whenever there were sounds around, even just normal sounds. I couldn't stand normal TV sounds, sounds in parties, in movies, from driving, dish washing, music, they all hurt really bad. Even the soft voice of my wife hurt. I had to wear ear plugs all the time. But the ear plugs blocked off all outside sounds, making the ultra high pitch T scream so harsh & so dominant. I had to choose the lesser of these two devils, T & H. But there was no lesser devil. I had to withdraw from all social contacts, no eating outs, no movies, no parties, no music, no hope for tomorrow but the abyss of a lonely life with intense sufferings ahead.

      Worse still, I suffered anxiety/panic disorders for decades before T & H. Simple challenges in life could turn panicky for me. So my poor brain simply had no chance when T & H hit. It just caved into relentless anxiety & panic attacks daily, even hourly. So besides the horrible sensations of T & H, I had to endure the myriads of horrible sensations & discomforts from anxiety & panic attacks. I honestly didn't know how to proceed any more. I had to depend on meds to survive each long, dark day. Anxiety, panic, depression, sleeplessness ruled my days. It was like a never ending torture. Very often when I went to sleep, if I could sleep at all (had to be on sleeping pills), I wished I never wake up again to repeat the torture cycle again & again. I never thought I could never recover from this 'hell' of living. Often, the big 'S' word was dangling in front of this tired and stressed out mind as it saw no way out. Life seemed hopeless with endless sufferings ahead.

      But never say never. I kept praying to the loving God for help and strength to endure. And today, I am back to normal, living an absolutely enjoyable, productive & abundant life. Miracles do happen. But I am not alone. Many members have recovered from T and have written their success stories on this board. I wrote mine 'From Darkness to Light' here.

      You may just recover over time as Karen suggests in her reply to you. I learned from the late Darlene Cohen the concept of 'Finding Joy Amid the Pain'. Joy & pain can co-exist peacefully. That is how I treat T right now, peacefully co-exist with it even though it is still same as loud & high pitched. I used to freak out by it. Now, I don't give a dime. T has lost its tyranny over me. So give it time. Learn some good strategies from kind forum members. I hope you will read up Dr. Nagler's "Letter to a Tinnitus Sufferer" or even ask him for advice in the "Doctor's Corner" section of this board. So be patient & give it time to heal. Please don't give up and don't lose faith in the loving God. We are not as bad as Job. All the best to you.
       
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