I’m sorry to post a negative message , but I’m really struggling.
The tinnitus has gone to a catastrophic scream . My head and ears feel like they are vibrating with the ringing . My T started a year ago with a high pitched cricket sound in my head .
I’ve seen several consultants over the past few months , with very little help .
My only relief from this, was to drink a few glasses of wine , which I told the consultant. He didn’t seem to be too worried about the wine and said , “if it helps ? “
He prescribed clonazepam, 0.5mg at night . This unfortunately caused auditory hallucinations and arrhythmia of the heart . My Gp told me to stop it after 12 days . I now have screaming fire alarms in my ears with 3 new tones and pulsatile tinnitus in the left side .
It’s been 3 weeks since stopping the meds .
My anxiety has gone through the roof and I’m now not sleeping. I’m so distressed, I feel I can’t go on anymore, I can’t live with this .
My family think it’s in my head and I’ve got “bad nerves “ that is making it all up .
My mum has booked a session of acupuncture for me , to start this week . I’m just too afraid to do anything . I feel sick with worry . I’m not eating or functioning.
Please please if anyone can give any advice what to do next ?
I’m so sorry this is a negative post , but I’m desperate.
Regards Zoë
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WoodyT
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Colleen is there any positive research being carried out at the moment? It's really upsetting reading posts from people who are so desperate. I've been at the bottom of a very deep black hole on many occasions because of t. Somehow I always manage to come through but it's getting harder.
Surely there must be clinical trials of new drugs etc?
Thank Ingrid , for your positive reply . I really need some guidance right now .
You’re right about getting out of the house , I take the dog for a walk down on the beach and seem to feel a little better . However, I’ve become acrophobic and fear bumping into someone I know . I was such an outgoing person , with 29 years in the Ambulance service on the South coast . My life was full . Our son left home earlier this year and bought his first home . My husband and I should be in the prime of our lives !
This T&H has certainly taken its toll . It’s been so debilitating as you know . I can’t believe you have had it for over 30 years! Wow , you certainly are an inspiration to us all .
I understand you use hearing aids ? Do they help with your severe T ? What medication did you take , if any ?
I’m just at rock bottom right now , I’m in that dark black hole and can’t see a way forward .
Hi Zoe. I think the advice you've received from posters here is wise and valuable.
I'd like to focus on precisely what tests you've had from consultants who have told you that there's no apparent physical cause.
First, have you had an MRI scan with a venogram? The venogram part looks at how the blood is flowing through your head. The quick, basic MRI scan that is usually ordered to look for obvious brain anomalies and neuromas sometimes isn't thorough enough. The reason I ask is because some consultants focus only upon basic issues and completely ignore blood flow because, if they're a neurologist or ENT specialist, it's 'not within their remit'. I fell into this trap, so I'm speaking from experience.
Second, is the tinnitus positional, i.e. does it stay constant as you stand/sit/lay down? Do you feel a sense of pressure in your head and do you get headaches as well as tinnitus? Do you have a history of headaches? Do you have an oddly persistent runny nose (watery fluid)? Does your neck 'crunch' when you move it around?
If you have any of the above symptoms and haven't had an MRI/Venogram (takes about 50 mins), I recommend you go back to your GP and ask for a referral to either a neuro-surgeon or an interventional neuro-radiologist for a more in-depth investigation into blood flow and pressures as well as bone/disc integrity throughout your head and neck.
I won't go into implications. It's not scary, just that I think it's best that medical opinion comes from expert specialists rather than an anonymous on-line post.
If you've already had an in-depth MRI/venogram and been asked the above questions and/or don't have any symptoms mentioned, then the examination you've had is most likely adequate. This doesn't exactly help you right now but it is nonetheless something to be reassured about. It does mean that you will need to find your own path through the head noise using coping strategies that work for you.
Family and friends sometimes don't understand what we're going through because they don't hear the noise and don't know how to help us deal with it. I've found it's best to rise above any unhelpful commentary and remove oneself from upsetting conversations that create rather than alleviate anxiety. Don't talk about head noise to those who don't understand it and don't ever struggle to try and make yourself or your condition understood.
Moving on, there are ototoxic drugs out there which can cause tinnitus and/or make tinnitus worse. You've already experienced this and a comprehensive list of offenders can be found at ata.org/sites/default/files.... It's a long list, but if you've already reacted badly to a drug, you may be sensitive to certain chemicals. In fact, if you're already on medication for another condition, your GP needs to consider whether or not this may be contributing to your tinnitus.
I found acupuncture good for relaxation and improving blood flow, along with mindfulness meditation for relaxation. Talk to any professional or sufferer who knows what you're going through and can offer sensible advice rather than indifferent criticism.
Finally, your frustration is understandable and I think common for tinnitus sufferers. Do be kind to yourself.
All the tests you have mentioned, I would have thought that this was standard , when someone is suffering badly . Sadly, this isn’t the case ...... I have been to see both ENT’s and a Neuro-otologist ( paid privately) in London. NO ONE has mentioned any tests or requested any scans ,to see what’s going on . I haven’t even had a blood test or a blood pressure taken !
I’ve mentioned this to my GP several times and they just shrug their shoulders and tell me, I have to live with it . I was even turned down from having CBT , as their response was , they couldn’t help me as they knew nothing about tinnitus! .
Everywhere I have been for help , I’ve hit a brick wall . The only thing the GP has offered , is a mental health appointment tomorrow , with a nurse . I can’t see why that will help? , I’m definitely not going to take anymore medication, as I’ve learned that lesson .
Yes , my neck cracks and my head feels like it’s been squeezed. I also have TMJ problem , which resulted in a Bi-lateral bone graft many years ago .
So , this is why I’ve hit rock bottom. We feel so alone with this .
I’m glad you have found alternative treatment that helps you . You say acupuncture helps ?
I have the first session tomorrow afternoon.
Did you ask for these tests Brigeit? Or did your neurologist request them ?
Il certainly mention them with the next ENT appointment .
HI Zoe. As a last resort, I paid to see a GP privately. As a result, I obtained referrals to excellent and appropriate specialists for comprehensive scans, examinations and procedures, all as a private patient. Fortunately, I have medical insurance or this would have been completely unaffordable.
My tinnitus onset was sudden, accompanied by other worrying symptoms and turned out to be the result of early physical trauma to my neck compounded by recent cervical spine manipulation. I prefer not to go into detail, but will say that my treatment is on-going. No end in sight just yet, but at least I know that I am now a) taken seriously, b) accurately diagnosed and c) in receipt of the best care available.
I have no medical training. The following is based on my experience and opinion, as well as the opinions of certain medical specialists during consultations.
Two things I've learned from a lengthy process: First, all GPs are triage for complex conditions. They are not specialists and have neither the skill nor training to diagnose at first glance and then treat complex conditions, particularly involving the head and neck. They should refer such cases to specialists. Second, some specialists can be narrow with their approach which means that a referral to them may result in a missed diagnosis. If a diagnosis contains the word 'idiopathic', it means "I don't know". If the specialist does not apply a multi-disciplinary approach it also very likely means that the specialist is not going to refer to another specialism for an alternative investigation either.
With head issues such as tinnitus, a range of specialists may need to be involved before an accurate diagnosis can be made, e.g. Neurology, ENT, neuro-surgery, neuro-radiology, rheumatology, cardio-vascular - and there may be others. The end result of such a multi-disciplinary approach might be a diagnosis of 'idiopathic'. However, this outcome is totally different from a cause that is actually known but hasn't been found owing to lack of investigation.
You could think about going back to your GP and specifically asking for a referral to a rheumatologist to check the integrity of discs in your neck and your bone graft, which should involve an MRI scan. The TMJ is close to the trigeminal nerve and aggravation of this alone can cause an array of distressing symptoms. You could also ask your GP for a referral to a specialist (mine was a neuro-surgeon) who might order an MRI/venogram of your head for assessment by a neuro-radiologist to look specifically for blood flow and cranial pressure anomalies.
Sadly, owing to NHS shortages, you are unlikely to get anywhere unless you are very, very persistent. You should not fret about the dire straits of NHS funding and staffing. That is not your fault and this is your health and life quality, so don't feel guilty. Just keep going until you get the appropriate referrals and a sensible diagnosis.
Accupuncture - yes, it really does help me in terms of relaxation but will not and could never resolve my head noise. Relaxation does help me manage it though.
I really do hope you are able to knock some holes through the omnipresent diagnostic brick walls!
I believe I know what your going through. You should try listening to some binary tones to ease arthritis and pain, practice toning. It will help excersize your throat shakra.
And if there's a chance you can get a set of tuning forks you could have someone a bedside hearing test..
I recommend Looking into it as well as what to expect for your up coming accupuncture.
When ever I try to go to the river or take a shower I hear "voices" but their not actually saying clear words, almost like a loud cafeteria in my head and if I'm in the shower too long the voices become fewer and louder. When I turn of the shower to get out I hear ringing in my ear and I feel a lot of resistance when getting getting dressed.
Woody I was put on 4.00 clonazapan for bad anxiety and depresssion. I’ve had tinnitus for 4 years. . I gradually weaning myself off it as it’s not a good drug and I’ve also found it tough... lots of tears. I take something to sleep but not that one. You might be off it by now . Good luck !
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