Just Diagnosed with Tinnitus

[Chezombie]

I've just been properly diagnosed with Tinnitus last Friday.

I have it in my right ear, which although I don't have any noticeable hearing loss, is the bottom end of normal.

I am also diagnosed with Asperger's syndrome, which only further complicates all this. My age old issue with things like filtering out background noise are now impossible to manage as whatever it is I am trying to focus on is also now competing with high pitched Tinnitus on top of this.

The Tinnitus is a constant, multi toned, high pitched sound that is impossible to manage with any of the masking ideas the clinic has told me to try because it seems to have a mind and will of it's own and will become louder than any kind of external sound.

They're not sure what caused it, it could have been a three year addiction to legal high (research chemical) Benzodiazepines (Diclazepam, a Diazepam analogue), which I stopped, or was more likely was forced to stop, by a drug treatment agency with no idea about the importance of medical intervention when it comes to Benzodiazepine dependency, thus they did not help me and I basically rapid tapered/cold turkeyed the equivalent of 1000mg of Diazepam (no I've not misplaced a 0) in September last year with no medical assistance at all.

I also had a dependency to OTC Codeine products, for which I am prescribed Subutex by this agency and was the reason I landed up in their 'care' in the first place.

My life is no longer about all the ins and outs of addiction, I don't much care for long, drawn out discussions about all the mistakes I've made, it's about tying to get through each day over 30+ mysterious neurological symptoms that continue to perplex the medics.

Along with Tinnitus, I have a severe, persistent dry cough that developed around April this year. No tests have proven it's cause yet.

I feel as if my breaths are 'insufficient'. My childhood Asthma returning has seemingly been ruled out but I am unable to take the steroid preventer inhalers as they cause me an extreme reaction which includes a worsening of my Tinnitus and all other symptoms.

I've got a sensation that every single cell inside my body is vibrating, like an electric toothbrush or phone on vibrate mode. Nobody can see this, and the only disease I've found online that mentions it is Parkinson's Disease. I'm 31, is this possible at my age?. The GPs are very puzzled by this one.

I feel as if I have flu constantly, oversleep and spend a lot of time inactive.

All my muscles pulse, jerk and twitch uncontrollably.

Every part of my right side is effected in some way by this.

Numbness and pins & needles to varying degrees constantly.

I get a lot of pain, all kinds of pain, joint pain, bone pain, back pain, period pain that leaves me feeling sick and gives me fainting spells. My entire life revolves around constant pain.

Sinus pain is a new one, and congestion too. Could this be linked with the Tinnitus?.

GP doesn't want to refer me to Neurology until I've seen the respiratory department, who don't want to see me until the end of September.

No offence to anyone in the underfunded and overstretched NHS, but they're not living (or doing their best to live) with these symptoms.

I've never been offered ANY kind of treatments. I know Tinnitus cannot be cured, but I've not been offered anything at all other than the failed masking stuff. I think this is because of my past, either nobody cares, or they dare not allow me to try medications, who knows. I'm not that person anymore. Heaven's sake make me pick the script up every two days if it makes them feel better, if it stops the noise, I'll do it.

They did tell me the Tinnitus is likely permanent though. How do people live their lives without a moment of silence?.

 

[Michael Leigh]

@Chezombie

I am sorry to hear that you are going through such a difficult time at the moment.

Tinnitus comes in many forms and intensities and no two people experience it the same. Most people do habituate to this condition and can carry on to live a fulfilling life, doing everything that they want to without it causing too much problems. This can be helped with devices such as hearing aids, white noise generators, sound machines, counselling with a hearing therapist and medication. That is my answer to your question on how people live with tinnitus or constant tinnitus. It all depends on how severe the condition is for the individual and the help they are able to get and having a positive attitude which isn't always easy.

Life is problematic and everyone has problems. Anyone that says they don't then I doubt they are telling the truth. Even if a person doesn't have a problem then they still aren't totally immune. Most of us don't live on a desert island and therefore, have some emotional connection with people that we are close to and care about. Family, partner, friends etc. When these people have problems we can easily become affected by what they are going through and this often creates stress and adversely affects our tinnitus. Depending on how severe and intrusive the tinnitus is, it can become more difficult to cope with, when a person has additional health problems as you have described which is unfortunate.

The NHS is one of the best healthcare services in the world but like any large organisation has its problems. The press and television news networks are quick to report on it's failings whenever they may occur. This is inevitable considering what I have just said. However, they seldom report on the successful operations that are carried out on patients, week in week out. Month in month out. Year in and year out. Or the thousands of people that are successfully treated daily in outpatient clinics and at Accident and Emergency. They don't report on the many thousands of people that are seen and treated at our GP surgeries daily. All treatment is at free at point of delivery. They don't report about the thousands of elderly people that are cared for in NHS care homes – only when something goes wrong.

As I have said the NHS has its problems. I have had tinnitus for 21 years and still treated as an outpatient and was recently fitted with two new digital white noise generators free of charge. These devices are very expensive. Again, this is just my experience and I know this is not the case for everyone across the UK. However, when someone is referred to ENT for tests everything is free at point of delivery, and when referred to Audiology and seen by an Audiologist or Hearing therapist all treatment and hearing devices including white noise generators if available are the same.

I hope that you are able to get some relief soon from your symptoms.
All the best

Michael

 

[Fabrikat]

How do people live their lives without a moment of silence?.

With greater or lesser degrees of difficulty. But your condition is still new. It could improve or resolve with time. People on this site often mention steroidal medication to deal with new onset hearing and tinnitus issues. Was this mentioned by any doctor? If not, perhaps you could request it at your local ER, especially at an Eye and Ear facility? Time is of the essence though.

I'm surprised that they are not pursuing neurological investigation of your confition in the first instance. Pins and needles, muscular fasciculation, with extreme fatigue, are often signs of neurological issues. But I am no doctor. It needs investigation. I guess you can only either seek out private specialists to be seen sooner, or present at an ER and demand some kind of intervention until they take you seriously. They need to understand that you are simply not coping with you condition at present.

 

[CrazyT]

Research chemicals can be dangerous, ironically even more so the legal ones (those not mensioned by Shulgin). I'm curious what chem you took, but since you've taken them for 3 years it sounds unlikely that is the main cause. Benzodiazepines aren't considered research chemicals.

 

[Kolisar]

Hi @Chezombie , and welcome.

@Fabrikat is correct, it may correct itself. In fact @Bill Bauer wrote the following post discussing studies that show a fairly high recovery rate from tinnitus ( https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-over-70-recover-3-studies.21441/ ) The results are very promising for recovery.

 

[Chezombie]

Thanks for the replies.

The hold up with any further referrals is due to the respiratory department referral delay, they won't send me anywhere else till I've been there. I'm exasperated to be fair. It's certainly not the fault of frontline NHS staff, there's as many frustrated doctors as there are patients. It's a mix of this particular area being severely underfunded and things like patients who repeatedly DNA and not enough being done to put people off doing that. I was in ENT last week and two names were called who were not there. You could see the looks of despair on the staff's faces.

I can't use anything that contains even a trace of steroid, it causes me a very severe reaction, including worse Tinnitus. I am supposed to take a preventer inhaler but I cannot because within 30 minutes of one puff, all my symptoms become extreme, my muscles lock up, I can't breathe, I cough as if my body is trying to expel my lungs, I wouldn't touch the stuff even if someone told me there was a 100% guarantee that the Tinnitus would stop, because my life would stop along with it. Topical steroid Eczema cream did EXACTLY the same thing.

These symptoms leave me stuck in bed, or at best the sofa, for days, even weeks at a time now. I don't go out, I have no life outside the house at all. I rely solely on games and films to stop myself going completely insane. Just getting to appointments is a military task now.

The tired, flu-like feeling is also complicated by a lot of sleep loss and disturbance due to the Tinnitus, so I can't win whatever I do.

Also a lot of the devices that ENT/audiology suggested I try, seem very expensive for an experiment that may not work.

Diclazepam is an analogue structure of Diazepam (Valium) https://en.wikipedia.org/wiki/Diclazepam and was sold freely in online 'headshops' prior to the introduction of the psychoactive substance bill last year.

In all honesty, the onset of my Tinnitus (around Christmas last year) does not fit with me stopping that (September last year).