No Hope Left — Warning Negative Post

#31
Oral steroids caused horrible anxiety for me, and I felt my tinnitus spiked as a result. This is one reason why I get annoyed when members encourage others to take steroids for (what seems like) every loud noise. Prednisone is not candy, not everyone's body processes it the same, and studies show its benefit is for sudden hearing loss - not for only tinnitus. Okay, unrelated rant over.

Back to original post issue: I am sorry this happened to you. It could truly be the prednisone. When my doctors prescribed it to me, they warned me about the mental side effects especially while tapering and immediately after. My general doctor even called to check on me, while my spouse stayed home with me those days because I was a complete mess.

How is your mental state now? Are you doing any better?
 
#32
Oral Prednisone can cause all sorts of symptoms if it's abruptly stopped after taking it for an extended period. How long were you on it, and how high of a dosage?

I hope things improve for you.
 
#33
Hi Valeri, please hang in there and know that there is some very promising help coming from the following trial:
https://labblog.uofmhealth.org/lab-report/first-test-specially-timed-signals-ease-tinnitus-symptoms
And if you read about the results, all of the volunteers had their T improved a good amount for several months and i think this will work as i tried the an online sound test where you find your T frequency and then stimulate your vegus nerve and i could tell there was something to it.

Also Valeri, i was where you were last week and after reading some posts, i read where alcohol can help in desperate times, so i have some gin ready to go as gin doesn't contain any salicylate compounds which can also increase and even cause Tinnitus.
 
#34
valeri said:
I really only had heaps of shitty luck starting from ENT who told me that people with tinnitus kill themselves, a reputable audiologist who said to come back when I get better to last night experience at emergency department.
Click to expand...

That's just really horrid, coming from a medical professional who should know better. People with tinnitus commit suicide, but it's usually because of the depression and anxiety. The rate of suicides in people with tinnitus is not that much higher than the general population. As for the audiologist who said come back when you get better, why would you need his services if you're better?

Depression makes everything seem worse, and anxiety really escalates it and also feeds the tinnitus, like a vicious circle. Is there anyone you can trust who will treat you for those?
 
#35
Alue said:
Oral Prednisone can cause all sorts of symptoms if it's abruptly stopped after taking it for an extended period. How long were you on it, and how high of a dosage?

I hope things improve for you.
Click to expand...

I can't remember but the first round was for maybe a week, taper down, no problems.
My tinnitus got bit better while on steroids so after stopping I thought why not do another round, which was for 5-6 days maybe, then stopped cold turkey due to stomach virus.
2-3 days later all hell broke loose.
I was on 25mg twice daily.
 
#36
Cheza said:
Depression makes everything seem worse, and anxiety really escalates it and also feeds the tinnitus, like a vicious circle. Is there anyone you can trust who will treat you for those?
Click to expand...

Unfortunately I trust no one
My experience at ER Only confirmed what I knew all along.
 
#37
#39
valeri said:
My tinnitus has been horrendous but the last two weeks it's gone even worse. The only reason I can think of is oral prednisone that I was on but didn't taper off because I was struck with stomach (gastro) virus and stopped cold turkey.

I was on it for a week then another round shortly after.
I never imagined something like this is remotely possible.
I've hit the rock bottom!

Yesterday I went to see my gp who referred me to private psychiatrist but said it could take 2-3 months and then said I should urgently go to ER because I said I'm seriously suicidal.

I went to ER and was told on arrival: we can't help you with tinnitus, what do you expect from us???
Great start! I was sobbing the whole time and she said: do you have a plan how to kill yourself? Did you discuss it with your doctor?

Then I was asked to take a seat in a noisy room full of people and screaming patients (I did ask if there's anywhere quieter for me to wait but no) and after two hours of waiting I left.

I'm absolutely lost for words as how little help I received, how little human life is worth to this whole system!

Unfortunately the level of noise I have is not something anyone could survive so I'm now moving towards more radical and permanent solution.

Sorry for negativity:(
Click to expand...

Seems to me you have neurogenic tinnitus, which is what many people with tinnitus have, but no-one has really researched this phenomenon until recently.
Don't lose hope, I'm working on it. (Tinnitus study via Neurology/Neurobiology)
 
#40
Harvest King said:
Seems to me you have neurogenic tinnitus, which is what many people with tinnitus have, but no-one has really researched this phenomenon until recently.
Don't lose hope, I'm working on it. (Tinnitus study via Neurology/Neurobiology)
Click to expand...

Isn't most tinnitus neurogenic?
 
#41
Hi @Valerie,
50mg was a high dose.
I only take 30mg.
Im sure you will start to pick up a bit soon.
Stay strong .
Love glynis x
 
#44
I'm shock of the statement the medical profession stated that goes to show me globally off/wrong they are. Sorry for the way they treated you. I would think this high spike would go away and back down. I also had problems with meds, but when I think about it anxiety is the culprit. I'm on a med now, but I've have/had anxiety problems when T came along. I also had the itchy all over, but my therapist said it's not the meds, it's anxiety. So now I do breathing exercises alot, hot bath every day. Yoga. If which I'm not a yoga person, but I'll do anything to calm down anxiety, for which I thought I was a calm person, try to do something for you
 
#45
Alue said:
Isn't most tinnitus neurogenic?
Click to expand...

No . . .Sorry GregCA it isn't.

The specific meaning of neurogenic is " caused or controlled by or arising in the nervous system."
All senses are an inherent part of the nervous system ("controlled by or arising"). Using the word "caused" . . . well this is where we get into trouble.
It may sound like semantics but it's important differentiate between 'causes' and 'resulting in' for instance. Many aspects of tinnitus belong in layers, layers that overlap just like neuroscience itself. What is the difference between Neuroscience, neurobiology and neurology? They all overlap but focus on different aspects.
There are many 'causes' or conditions that cause tinnitus - medication, ear infections, loud noises, meniere's disease, tmj disorders . . . the list goes on. Many times when the cause or condition no longer exists the the tinnitus can subside. (Loud music or ongoing sound resulting in ringing in the ears. A day later or so it disappears).
The mechanism that is creating the tinnitus is what I am researching. This is where neurogenic tinnitus comes in. I wanted to call it neuro systemic tinnitus (caused by the brain) but since the nervous system is controlled by the brain, neurogenic will suffice.

I'll keep everyone posted
 
#47
Bill Bauer said:
Are you an undergraduate or graduate student? A post-doc fellow? A university faculty member? Or are you like me - reading published research on your own?
Click to expand...

The latter . . . and then some.
I have been attempting find the time and funds to become a mature age undergraduate. I am in the process designing an item which will lower the cost of concrete post-tension construction, then I'll move to the Neurosciences.
In the mean time I will continue my research and experiment with treatments on myself.
I have people I can discuss my research with that understand what I'm talking about, not many can.
A friend, an associate professor of neurology . . . . . my daughter, a forensic psychologist (Masters and Phd) and various others.
Between us all I'm sure we can find a solution.
 
#48
Val,

I just had a thought. You are assuming your spike is due to your 2nd round of pred.

But, you had gastro. So, I am thinking, maybe your spike is somehow related to your recent bowel symptoms as in a vagal nerve link?

If it is gut related, then you might benefit from lots of gut work, including quality probiotics?
 
#50
Harvest King said:
The mechanism that is creating the tinnitus is what I am researching.
Click to expand...

The mechanism that Susan Shore proposes and explains is pretty reasonable. If you follow her work, you'll understand her hypothesis about the mechanism that actually creates the tinnitus.
The positive results published by her latest study provides a good validation set for that hypothesis, actually.
 
#51
Harvest King said:
The latter . . . and then some.
I have been attempting find the time and funds to become a mature age undergraduate. I am in the process designing an item which will lower the cost of concrete post-tension construction, then I'll move to the Neurosciences.
In the mean time I will continue my research and experiment with treatments on myself.
I have people I can discuss my research with that understand what I'm talking about, not many can.
A friend, an associate professor of neurology . . . . . my daughter, a forensic psychologist (Masters and Phd) and various others.
Between us all I'm sure we can find a solution.
Click to expand...

Can you please do neuroscience first then construction work?
 
#52
valeri said:
Can you please do neuroscience first then construction work?
Click to expand...

LOL . . . I would like to but I have to earn a living . . . . I do 2D and 3D design and this innovation in construction will pay the bills so to speak.
Although I am male . . . . I can also multitask and I will continue my research.
I actually know what the mechanism is that creates tinnitus but it's very difficult to explain simply in this or any forum.

It explains neurotransmitter function and what occurs within the synaptic space, their relationship to neurosensory response and how the brain's neuroplasticity adversely affects and over-stimulates the cilia, cochlear nerve and auditory nerve. (Pretty complex).

The hardest part is finding a way to retraining the brain.

Hang in there.
 
#53
@Harvest King I visit a lot of neuro sites and many neuroscientists have different views, but many agree that neurotransmitter functions have at least some association with loss of functional volume in the mPFCs and thus handicaps neurons. Almost all scientists believe this theory has at least some validity because tinnitus has been proven within fMRI studies showing the auditory cortex as being very active with those with tinnitus.

https://www.nidcd.nih.gov/news/2011/tinnitus-what-happens-when-brains-gatekeeper-breaks-down
 
#54
Harvest King said:
It explains neurotransmitter function and what occurs within the synaptic space, their relationship to neurosensory response and how the brain's neuroplasticity adversely affects and over-stimulates the cilia, cochlear nerve and auditory nerve. (Pretty complex).

The hardest part is finding a way to retraining the brain.

Hang in there.
Click to expand...

Are you talking homeostatic plasticity or hebbian plasticity?
 
#55
Harvest King said:
The hardest part is finding a way to retraining the brain.

Hang in there.
Click to expand...

You might find this interesting, King. I've read a lot papers that show that electroacupuncture can do wonders for T. So I came across this as a random. Granted it's probably only of benefit to a qualified acupuncturist but it may be worth looking at.

https://www.amazon.com/Neurogenic-Tinnitus-Deafness-Acupuncture-Moxibustion/dp/7506750929

And then I caught a reference to something called Aderazid, which I've never heard of, have you?

THE CLINICAL EFFECT OF ADERAZID ON THE TINNITUS
https://www.jstage.jst.go.jp/article/orltokyo1958/12/5/12_5_369/_article

"In the medical treatment upon tinnitus, the effectiveness of pyridoxin hydrochloride I and mesoinositol hexanicotinate II has been already recognized. And now it is recommended to use both substances together for a more effective treatment.
Aderazid, commercially available, which contains 10 mg of Pyridoxal phosphate calcium -an active form of I- and 200 mg of II Per tablet, was used for 22 cases complained tinnitus. According to the result from these cases, remarkable effects of Aderazid were obtained in the cases which used the smaller dose during comparatively short period, and in those of early stage after tinnitus had developed. Aderazid is notably advantageous medicament for the treatment, without any side-effects, which is much more effective than other ones without Aderazid which have been done so far."

And looking up that brought up this. There's a few interesting finds in there I haven't heard about either.

http://www.earservsecure.com/drugs/...cts Book - 2nd Eddition. May 10 2016 copy.PDF
 
#56
Hang in there, Val. It'll pass. As others have mentioned not tapering is likely the culprit. Your brain will reset and adjust, it just requires a little time. Meanwhile, medicate as necessary to get through the rough patch. Meantime try and take the pressure off your nervous system. Drugs like Prednisone temporarily increase intercranial hypertension and cerberal spinal fluid pressure. This can manifest itself by exacerbating your T...again, temporarily. The major problem with a spike however is how we react to it. It's much more psychological than physical. You need to level out and let your brain relax because right now it's in overdrive. Get on some nortripilyne and at least a short term (2 weeks ideally) course of benzos - my rec is Valium 1mg tablets, up to a max of 5mg a day. If you need to go longer, do. It will pass. Drink plenty of Chamomile tea. Stay away from salt, sugar, caffeine, that sort of thing.

Then start looking at some physical therapies for treatments (electroacupuncture, PStim, TeNS, PoNS). Drugs are not the way to go long term for T, IMO. An anti-inflammatory diet and regular (not hardcore) excercise will help in the long run better than any current meds - especially an anti-inflammatory diet. Also just go for walks. It really helps calm the brain down when you allow it to be distracted by something that simple. Watch the birds and critters and such. And if you start wandering back to the noise in your head, just push it aside and refocus on what's around you instead. You WILL get past this! :hugs:
 
#57
valeri said:
My tinnitus has been horrendous but the last two weeks it's gone even worse. The only reason I can think of is oral prednisone that I was on but didn't taper off because I was struck with stomach (gastro) virus and stopped cold turkey.

I was on it for a week then another round shortly after.
I never imagined something like this is remotely possible.
I've hit the rock bottom!

Yesterday I went to see my gp who referred me to private psychiatrist but said it could take 2-3 months and then said I should urgently go to ER because I said I'm seriously suicidal.

I went to ER and was told on arrival: we can't help you with tinnitus, what do you expect from us???
Great start! I was sobbing the whole time and she said: do you have a plan how to kill yourself? Did you discuss it with your doctor?

Then I was asked to take a seat in a noisy room full of people and screaming patients (I did ask if there's anywhere quieter for me to wait but no) and after two hours of waiting I left.

I'm absolutely lost for words as how little help I received, how little human life is worth to this whole system!

Unfortunately the level of noise I have is not something anyone could survive so I'm now moving towards more radical and permanent solution.

Sorry for negativity:(
Click to expand...
I empathize with how you feel. I was suicidal 5-6 months ago. Less so now but it's still pretty bad some days.

Most people don't understand tinnitus. When I went to the ER, they kept me waiting for several hours before coming to see me. They wanted to commit me to a psych ward, but my mom objected, as we agreed it wouldn't really help.

Any "help" they give you is for depression or anxiety. They act yo fix your mood with mood enhancing drugs like antidepressants. They aim to fix the symptom rather than the disease itself. I personally got tired of being told to not do it, that it "gets better", or to "ride it out" (by someone who doesn't even have tinnitus).

It's not that no one cares, but the system is designed to get you to not die, that's it. They don't actually care if you're better as long as you're not dead. That sounds pessimistic, but it's true.

Sadly I don't see a cure in the foreseeable future. As imaging studies are showing, tinnitus is the result of brain plasticity in the auditory cortex and limbic system. It can't be reversed, so at best, they can prevent tinnitus. They cannot cure it though.

Hope you get better. As bitter as I can be I'm here if you need to vent.
 
#58
Gl0w0ut said:
It's not that no one cares, but the system is designed to get you to not die, that's it. They don't actually care if you're better as long as you're not dead. That sounds pessimistic, but it's true.
Click to expand...
This sums it up better than I could have. Once you have entered their system they become fearful of their own liability.
 
#59
Halsy said:
And then I caught a reference to something called Aderazid, which I've never heard of, have you?
Click to expand...

Thanks for mentioning it but yes, I have heard of Aderazid. It is a NMDA receptor blocker which reduces the neurosensory response.
The dorsal cochlear nucleus becomes hyperactive and the NMDA receptor blocker lowers the hyperactivity.
 
#60
Halsy said:
I've read a lot papers that show that electroacupuncture can do wonders for T
Click to expand...

I prefer NOT to add electrical impulses . . . the brain does that already.
I recently had dry needling treatment on my lower back. The muscles store electricity when they tighten up. The brain increases the neurotransmissions to get a response (neurosensory response) and this causes more tightening. Dry needling released the store electricity (excruciating), however the unexpected result was my tinnitus reduced by 75% for 2 days, then over a period of a week increased to it's usual level.
I will be getting a series of treatments over the coming months to see if the tinnitus can be permanently reduced.
 

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