I fell pregnant in Sept 2014 (unplanned). I didn't want more kids as I had a bad experience after my son was born 9 years ago. I had dizziness, feeling of sleeping and never waking up again, panic attacks etc. I took a long time to recover. So when I feel pregnant (after 9 years) my husband told my son he is going to be a big brother and he got so excited and I didnt have the heart to abort the pregnancy as I saw how happy he was. I was scared to go through with it considering how it was when my son was born but decided to do it anyway for the sake of my son. In November 2014 I had a feeling in my right ear that I was losing my hearing so I made an appointment with an ENT. He did tests but never told me my hearing in my right ear was bad, he just kept quiet. I was so stupid and didnt even ask him what the tests showed. He just gave me drops to put in my ear. I went home and put the drops one day and the next day I would put olive oil and kept this going for a week. However I felt this blockage was getting worse but didnt think anything about it. I had tinnitus in my right ear previous to this for about 2 years. It wasnt something I even noticed because it only happened at work when I was stressed but other than that I never noticed it so I didnt worry too much. At the end of Dec 2014 I woke up one morning with this terrible noise in my right ear which scared the sh*t out of me. I was so scared you would not believe it. I also had this fullness in my right ear as if someone stuffed cotton wool in it. I thought it would go away but a week later it was still there only this time I had a noise in the centre of my head by my nose, a different static sound. I was getting more scared by this time. Then at the beginning of Jan 2015 I had a miscarriage. The noise however still remained. I then went for an MRI and CT scan at the end of January 2015, all clear. I then did blood tests, all clear. I then went for a CT Angiogram and was told there is a narrow blood vessel at the back of my head on the right side but that they are not sure if this is causing the noise. I was advised to "just live with it" as they could not put a stent in as there is a huge risk of a stroke. My doctor then called me in and said that it "could" be tinnitus and there is nothing they can do about it. I have been depressed since that day. Its almost 7 months now and I cry so often as I miss my "normal" life when I didn't have this freaking thing !! I am so suicidal and I don't know what to do. I almost jumped off the building today where I work but I keep thinking about my son. If it wasn't for him I would be dead right now. How do I cope and live with this forever. What if I live until a 100 years old, OMG, how will I manage with it until I die. I don't think I can do this. I am so depressed and yes I saw a psychiatrist and a psychologist and 4 different ENT doctors, GP's, Audiologists etc etc. I am so sick and tired of doctors, hospitals etc. My life has been and is still hell for the last 7 months. I cannot sleep like I used to. I used to sleep "like dead". Now when I wake up at 3am I cannot get back to sleep like I used to. To top it all off I moved to a new house in Sept 2014 and I am homesick for my old house as there I was healthy with no tinnitus and happy. Now I am miserable in a home I hate. PLEASE PLEASE anyone help me. What must I do to cope ?
Shabina. I have constant ringing tinnitus in my right ear. It is severe. Sometimes worse at different times. I am going through a particularly bad time now but am feeling more positive about it even though it's always there. You have to go and see your doctor and tell him/her how you feel as you may need something to deal with your anxiety /depression. It will make you stronger. Try and get in touch with other sufferers and talk about it. That will make you feel better. Message me if you like. In time you will habituate , get used to the sounds and learn to dismiss them. But you must face it Shabina. Help is there. But first go back to your doctor and get some medication. That will make you stronger, then you can deal with it positively.
Best wishes,
Gareth
Gareth.
Thought I would just say Hi, We are suffering the same probs, sleep was a BIG
problem, couldn't drop off, for the noise .My GP was helpful though not all of them are understanding. H e gave me a low dose sleeping pill . Sleep at last,
though I do wake about 4, at least I do get some sleep.
Something else that was offered , is Stress Management,which, again , I find
helpful ,you can rant and rave about theT.T or anything else,
There really isn't any cure YET !!!! and stress really does make it worse, but you
probably know that.
I,m not going to tell you what to do, it's an individual thing, but I do all the things
I enjoy.
I know it's awful. and I have no idea how or what set it off,
Lots of us around on the forums you can chat to,
Jacqueline
Hi Jaqueline, nice to hear from you. Yes I agree completely about doing the things that you enjoy. I still play golf and meet up with friends. It's the quiet things such as reading and sitting out on a summer's evening(when we get the weather) that I find difficult. But it is vitally important that we stay positive and somehow try to turn the noises into angels rather than demons. Sleep is a difficult one. I have the radio on all night usually. I try to ration my anxiety and sleep meds so that when I have a really bad "spike" I can turn to them. It's a pity that as yet , apart from CBT, there is little one can do to stop the noises. Hopefully the day is coming nearer when we can control T rather than it control us. Message me any time you want to talk.
Best wishes ....stay strong.
Gareth x
Dear Shabina, I have also had tinnitutus since last November and the time since then has been extremely difficult for me. I will write more details tomorrow since it is late where I am, hoping that they will help you. But in the meantime, if you are reading this tonight, please remember that YOU ARE NOT ALONE. There are millions and millions of tinnitus sufferers and it is normal to have the feelings that you are feeling, especially at the beginning. Please don't lose heart. I am learning to cope in different ways, which I will explain tomorrow. I would prefer just not to have tinnitus at all, rather than learning to accept it and to habituate to it. But I read a helpful book recently on Mindfulness, in which there is a chapter on accepting what is the current situation. This means that you might not be happy or accept that you will have or want to have tinnitus for ever, but that you accept that this is the situation at the moment. This helps me enormously, because it leaves room for looking for a cure/solution/improvement etc. etc. Please don't lose hope - because there is always hope. I'll stop here tonight, but I will write more tomorrow. Please feel free to ask me for any advice or help. I frequently try to help people on this forum, hoping to get some comfort out of it myself, but so far no-one has responded. Take care.
Hi Shabina - so sorry to hear of your great difficulties. I too have tinnitus and hearing loss and balance problems after my doctor put me on a high dose of atorvastatin, which can be toxic to the ears. Yes, tinnitus is very, very annoying and disturbing. There is no escape from it, so one can feel "trapped" and hopeless. I am struggling with trying to cope with it so I can fully understand and appreciate your emotional pain. Right now I am trying to focus only on the here and now as much as possible and not worry about how I'm going to cope with this for the rest of my life. There's a chance it may lessen in severity in time. There's a chance that there may be a medical treatment to help it eventually. There are also some kind of hearing aids one can get which help to mask the sound of the tinnitus. I know that none of these things give us the relief that we desire right now, but by considering them, it may help us get through the days right now. You might want to ask your doctor if he or she can prescribe a medication to help you sleep better. I take a number of natural sleep aids such as l-tryptophan, GABA, a mixture of hops and valerian root, and also a natural calming agent with Holy Basil in it called Total Calm Advanced, plus a mild sedative at bedtime. All of these things in combination help me get enough sleep to function on a daily basis - I have a very stressful job on top of everything. I try to find small things that give me some happiness and peace, and I also try to keep my faith in God and pray as often as possible. I also have a psychotherapist I see regularly and am able to talk about my feelings. If you can find a competent clinical psychologist or clinical social worker, that might be another way to help you cope with all of this. Hopefully, some of these things can help you begin to take your life back and not be defeated by this thing.
Thanks for your response to Shabina Sue. I have been taking a similar approach in my own life, and it's a one-day-at-a-time process. I would rather be free of this condition altogether, but since that's not possible right now, all I can do is try to cope with it and not take over my life. I wish we could all meet in person and share our feelings because then we would know and truly feel that we are not alone.
Hi Barbara. I know, it would be great to meet and discuss our individual experiences. Tinnitus is so much an afliction which only the sufferers understand. I wish that the NHS would try to bring this awful condition to a wider medical audience. Knowing that we are not alone is a great comfort and hopefully a cure may be on the horizon. Stay strong. Peace, love and happiness.
Dear Shabina,
I have read through your story and perhaps I can offer some commentary which might be helpful.
First, I must say that I am one of the 260 million persons in the world who has intractable chronic tinnitus. All of your emotional feelings, thoughts and moods are felt / experienced by every Tinnitus sufferer - yes, you are not alone in your own misery.
Although, in the current medical world of 2015 there is no such thing as a "cure", regardless of written scam advertisements, con-artists and all the false claim-makers who want your money, there are different types of methods which have clinically been shown to help improve the noise levels symptoms of tinnitus, personal habituation, emotional and conscious acceptance and the avoidance of sleep deprivation.
Many of the treatment modalities for improving (T) are expensive, thus the patient must do serious reading and make smart comparisons among the legitimate treatments that are available. I do my research reading as follows: I use Google search engine, which may be the best, and I search for clinical studies and articles at: NIH / PubMed (National Institute of Health / Published Medical). The NIH is the largest US government subsidized research organization in the world. I also have a dear friend, a physician, who has chronic tinnitus and together we have studied through several medical textbooks specifically on (T).
The onset of severe tinnitus will eat a way at every patient deep into the conscious and sub-conscious mind. Especially during the first year onset, your limbic nervous system identifies the uncomfortable and somewhat bizarre noise in your brain as an enemy - this causes the flight or fight state of mind. This continuation of this state of mind will exhaust you and eventually it can cause the onset of other disease. Your state of mind directly effects your immune system.
With this said, here are several things to consider:
Sleep Deprivation is the "number one" concern for a (T) patient. Inadequate sleep leads to suicidal ideation and physical exhaustion of the entire human body.
Mentioned below by Barabara are the names of some natural sleep aids. This is very insightful and I have tried some of these substances for sleeping.
"I take a number of natural sleep aids such as l-tryptophan, GABA, a mixture of hops and valerian root, and also a natural calming agent with Holy Basil in it called Total Calm Advanced, plus a mild sedative at bedtime." If these natural products do not work for you then discuss with your doctor the following; prescription of a "hypnotic sedative" - Ambien, Lunesta or there Generic drug such as Zolpidem Tartreate, etc.
A Nervous State of Mind (constant) is the second concern of (T) and much of this is caused from FEAR, FRIGHT and NON-ACCEPTANCE of this medical condition.
As far as the medical research indicates (clinical based studies) TRT, Tinnitus Retraining Therapy the model created by Professor Jastebroff, is the most effective way to learn ACCEPTANCE and to turn off the NEGATIVE emotions stemming from fear, fright and panic. If one chooses to find a PhD. level Psychologist for TRT counseling hopefully they have studied under Proff. Jastebroff, his clinical model.
The following prescription drugs, which are to be taken seriously - meaning used with caution and not abused, have been very helpful in treating (T) symptoms (noise levels & pitch) and calming negative emotions are: Xanax and Klonazapam. Usually, in small dosages. Xanax in clinical trials showed to reduce symptoms 45-55% in majority of patients. The natural herb Ginko Biloba is helpful for certain types of (T) - however it must be of pharmaceutical grade and one would try it for 60-90 days to see if it helps.
Tinnitus Maskers are at the top of the list for electronic devices. If the Audiologist programs the masker correctly (based on Audiology tests and product knowledge) they help the majority of (T) patients. This is what William Shatner Star-Trek) discovered for managing his (T) - Mr. Shatner, like so many sufferers went through suicidal ideation for one year. He eventually habituated and managed his condition.
If there is hearing loss - then a combination hearing aid and masker would be appropiate.
There is much positive research regarding the use of HYPNOTISM and COGNITIVE BEHAVIORAL treatments - something to be considered.
The following items are very expensive and the research data is mixed as for actual effectiveness.
Neuromonics - much of the research is financed by the company (possibly slanted) and the price is outrageous. However, it has helped a percentage of patients. Seriously, one needs to read carefully all information.
SoundCure - has been available for about two years. Less expensive than Neuromonics.
TinnitusLabs, Montreal, Canada - affordable price and it has been used in the Montreal Tinnitus Clinic for over ten years.
All of the three mentioned devices are based on the theory of "Plasticity" the brains ability to re-adapt to changes in the auditory cortex and the hearing system, which is a very complex design by nature,etc.
On a personal note, I wouold suggest if you can find a "psychologist" who has (T) or cochlear implants, or is partially deaf (uses hearing aids) then you are in the presence of another human being who truly understands the nature of your condition and why your emotions are out of whack.
I deal with terrible-terrible (T) and I spent my first year of onset in a world of ugly thought - the suicide game. I have an acquaintance who committed suicide due to (T) - but he did not put a program together - he did not reach out and try alternatives.
Far from perfect and far from what the little child in you wants to hear - (T) can be accepted and managed. There will be good days and there will be some miserable days.
Look at everything which is available to help you harness (T). It is not easy but perhaps it really is better than ending our lives.
Take Care / Calm Down.
Spiritual Strenght - Just look at the children of St. Judes Hospital fighting Cancer - Today, we at least have some tools to help us with (T) - imagine a hundred years ago...!
Something else I forgot to mention:
In every room of my house I have a medium size fan or air cleaner which puts out a relaxing low frequency sound of air / wind movement.
Next to my bed is an outdoor water fall which puts out a noticeable volume of water falls - its great. The concept of (T) maskers is based upon the physics of water sounds.
As for music therapy - try listening to gentle new age music on a low-medium volume level - never never loud. New age pop-orchestral music has all of the frequencies that cover the human spectrum of hearing.
Create at night in your bedroom an acoustic environment that masks / blends with your (T). Water-falls, sounds of nature, CD masker with stereo system, White-Noise CD masker, anything that helps.
And give to your family a printed article which explains the challenges of (T) - ask them to read it - they need to have some understanding & empathy for you.
Life is to be lived - "one day at a time"
Hi Sue
Thank you for your help and support. So you have just developed Tinnitus recently like me. It is such a terrible thing to have. Why hasn't a cure been found yet. Doctors are so smart and can do such major transplants but they cannot find a cure for this. It is quite shocking ! I know there are millions of sufferers out there and I pity each and every one of them and I know exactly how they feel. I often ask myself "God, why me, why now" I had a perfectly "normal" and healthy life for the last 40 years I am on this earth and why suddenly out of the blue this happens to me. I blame the pregnancy for causing this as I was told by my doctor that I may have picked up a viral infection when pregnant which caused this problem. If only I knew that this was going to happen to me ! Life is so unfair !! Please give me your advice or whatever help you can offer me. I would like to know how you developed your Tinnitus and what you are doing to cope with it and not letting it affect your life. What does your T sound like and is it loud ? Do you take any meds to help you and if so what are they. Thanks once again. Waiting for your reply. Take Care also.
Excellent advice from Mike. I too have tried expensive neuromodulation methods with little effect. Phsycho therapy from a good practitioner who understands the anxiety and depression caused by T is a good first step.
Thanks Jacqueline for your comment.
Nice to know I am not alone with this terrible condition. It also nice to talk to people who knows what you are going through, it helps alot.
I wish a cure is found soon though as there are so many people suffering for so many years. Its not a good life to live like this. I used to enjoy peace and quiet and I took it for granted. I never knew what I had until I lost it ! I wish I could turn back the hands of time, if only !!!
I heard of many stories of many people who committed suicide because of their tinnitus, I know exactly how they feel. I keep thinking of the easiet and quickest way to die but I just don't have the guts to do it. I am trying so hard to stay strong for the sake of my son but some days it gets too much to handle. I am not the same person I was as I used to be so happy, carefree and alive. Now I am so withdrawn, quiet, irritatable and sad most of the time.
I wish I was as strong as you guys on this forum.
I guess because I am new to this that is why I am not copying as yet. I believe only time will tell.
Thanks and take care Jacqueline.
You can chat to me anytime if you want.
Hi Barbara, T is controlling my life right now and I dont know what to do. I am suicidal on a daily basis. Keep thinking of the best way to end this misery once and for all. Dont know how long I can keep this up. I wish I was strong like all of you in this forum but I am so weak and fragile right now. I am hanging on by a thread literally. I gave up on God ever existing cos if he did exist then none of us would be suffering like this right now and diseases such as cancer would not exist. Sometimes I wish I had an amputated leg or hand but no T. This would be better for me as at least people would not think I have a mental problem. T is like a mental problem cos you have to see psychiatrists and psychologists etc. I live in South Africa so I don't know if they have natural sleeping aids but I will have to find out from a herbal shop. How long are you a sufferer ? Can you hear your T all the time or is it only at night when all is quiet ?
Hi Shabina, believe me I am not stronger than anyone. This tinnitus came on top of a whole big bunch of problems in my life that have been going on forever, so it has hit me very hard, and yes I have questioned my faith too. I don't know God is taking a back seat to all of our problems, but I suspect it is because He wants us to figure it out and work through out with His love and guidance. We as human beings have the God given ability to solve all of our problems. It is our unwillingness to do so that stops us. It is the evil (sin) in our world that has created all of our diseases, wars, and other problems, and God feels our pain and wants to light the way for us to overcome all of our adversities. That said, it is not any easy task for any of us. Life is a daily struggle, and the only thing that helps me to keep going and not end my life is the faith that God is with me and helping me do all that I do which is in accordance with His laws. I realize that a great many of my problems have been created to a large extent by my own human errors. My tinnitus was caused by the carelessness of my doctor and the greed of the pharmaceutical industry in putting out drugs that they know will hurt certain sensitive people. Experiencing hearing loss is very traumatic to me because I love music more than anything in the world, and I pray that the hearing loss will not worsen, so I can continue to enjoy playing an listening to music. Each of us has to own our problems as painful as that may be, and work with God in doing what we can to overcome them and grow stronger in the process. I hope you will reconsider some of the conclusions you have reached and work on embracing a new perspective on your life as a whole, not making the tinnitus dominate all of your attention. It doesn't happen overnight, but we can work on it day by day. I pray that God will help you in your journey.
Sabrina, i have had it for almost 3 yrs, it was hard at first, but then it all started getting better, now i drink, party, have great time with my kids, but i did feel as you are feeling now, its just a matter of time, it will get better, 8 promise you, you will get used to it as we all do, i know the feeling and trust me i felt just as you did, i hear it all day every day lol, its just a new noise for my noise menu, , accept it, it will really help.....God bless you and help you Habituate, live life regardless of this hellish noise, it will go away when we go to eternal sleep, thats how i think of it, you have many things to live for, dont ever think of taking your life, its just a matter of time, just accept it and hear it, learn to tolerate it, thats what i do! IT WORKS.....
Hi Shabina
Firstly my sympathy.
I've had tinnitus now for seven years after receiving chemotherapy for six months.
The chemo had damaged the minute hairs in my cochlear resulting in my brain receiving false sounds of a 12khz pitch.
Tried various masking devices which didn't really help.
I did manage to go to Adenbrooks audiology dept in Cambridge and saw David Baguley consultant.
He and two others have written a book which may help called Living with Tinnitus. This is more CBT but may help you.
Hi Shabina, I'm so glad you have written back to me and to the others in this discussion which you started. I think this is a good sign because, in asking for help, you have taken the first step in trying to help yourself. I was once told that we have, within ourselves, the solutions to all our problems. Wise words indeed, which I wish I had taken heed of before the onset of my T.
I have such a lot to write that I may have to write it all down in chapters. I am so glad that the people in this discussion have touched base, because I have read with great interest what you all have to say and have learnt from all of you. Please give me time to respond to each of you. I refuse to let my T get the better of me, like I was willing to let it a few short months ago. I will explain how I reached this state of mind as I describe my story.
My problems started in the run up to my menopause (I am now 51), when I began to experience extreme anxiety, hot flushes and panic attacks, particularly at night. It was after a really intense period of these that I got so desperate and tired with lack of sleep, racing heart and crippling anxiety that I felt I could not function properly anymore. I knew these symptoms were hormone-related but upto that point I had resisted taking synthetic HRT because of the associated risks. I was so weak at that point (last October) and desperate for calm that I agreed to take anti-anxiety drugs for a short time to give myself some much-needed sleep. I took Tranxene (clorazepate), a benzodiazepine, for only 1 day (2 x 5mg pills - one in the morning and one in the evening) before waking up with tinnitus the next morning. So all I had was one blissful night of anxiety-free sleep before waking with tinnitus the next morning, which I have had ever since until this day, 9 months later. When I told my GP the next day about the noise and asked her if I should stop, she said she thought I should continue since she thought I needed them!! Now I know that any doctor worth their title should discontinue any medication which a patient is claiming to cause ototoxicity. But at the time, I was in such a drugged stupor that I could not think clearly for myself. After 2 days on these drugs, I finally consented to trying HRT as a long-term solution to addressing my hormonal problems. On hindsight, I know that the combination of starting these two strong drugs in such close proximity to each other had a very bad effect on my body. After 4 days taking the anxiolytics, I eventually came to my senses and stopped cold turkey. That is when my nightmare really started, since after a few days I realised that something was terribly, terribly wrong with my hearing. We were visiting Paris at the time and I noticed that the sounds of traffic were so loud that I could no longer go anywhere outside and so I spent the rest of our stay in my room. When we returned home, I began to research frantically what could be happening to me. I began to read about hyperacusis, an abnormal sensitivity to everday sounds and realised that this is what I had developed, along with the tinnitus. In addition, HRT did not agree with me at all and made my heart beat so fast I felt like a racehorse. I was totally traumatised by these events and the effects they had on me and spent the next few weeks in total panic and shock. I could no longer join my family at the kitchen table for dinner, because the sound of their voices was too loud. Even the sound of my own voice was too loud! I couldn't be any where near the kitchen when the table was either being laid or cleared or the dishwasher was being loaded or unloaded, since the chink of china and cutlery was excruciating to my sensitive ears.
(I will write more tomorrow).
Hi Barbara
I can definately relate to what you are going through, believe me I am going through a huge bunch of problems myself and to top it all off I ended up with Tinnitus as well. It is not getting any easier for me. Last week my house was broken into and just today someone broke into my car at work. My problems never seems to be ending. I was perfectly healthy last year this time and in a year everything turns out for the worse. I wish I never had tinnitus and there was no such thing that existed. I am so very fed up with all the bad things that has been happening to me. How can I deal with everything including a huge pounding sound in my head. I try my best to ignore it but sometimes it is so loud and strange. I get headaches accompanied with it as well which does not help at all. I struggle daily with everything. Waking up is a struggle, getting ready for work is a struggle, everything I do for the day is a struggle and no one at home understands. I feel as if I am just "existing" and not living anymore like I used to. The only people who understands are people like you in this forum. I am glad that I can speak to people who are in the same boat as me. It really helps. I wish I have so much faith in God as you do. My faith has now disappeared considering the hell I have been through. The funny thing is I never in my 40 years on this earth had any such problems before. All this started when I moved to a new home in Sept 2014. It has all been downhill since then. Sometimes I wish I had some other illness and not this one as it is so hard to deal with. I have thought so many times of the best possible way to end my life - maybe drink poison, or jump of a building, or by hanging myself but I don't have the guts to do it. I am so scared cos one day something is going to push me over the edge and I will just not think of anything or anyone and just go ahead with the suicide and end my miserable life once and for all. That is how much T. is affecting me. I am going for TRT therapy but I am not sure if that is going to help or if I am just wasting my time and money. What do you do to control your T. Is there any meds that might help me ?
Thanks Ray,
I have heard so many people say I will get used to it. I sometimes wonder if I ever will.
How did you habituate to your T. I also thought that the only time I will be free of this noise is when I die. I am afraid that if I live for very long and I will be miserable from now until I die. That thought scares the life out of me. I wish God just take me away now instead of letting me suffer until old age. Death would be better than having to live this kind of life. How long is your T. and what does it sound like ?
I am glad you live your life and not let it bother you. I wish I could say the same. Maybe time will tell, who knows. I am so depressed as well as I never thought in a million years that something like this will happen to me. I ask God "why me". I have friends, family, cousins who had a second baby but none of them developed T. while pregnant. How come I am the only one. Life is just not fair ! If only I knew this would happen to me, now its too late. I will try and take your advice. We only got one life, unfortunately my life is not turning out the way I want it to, just my luck hey !