False Hope and Reality

[JohnAdams]

No, not until there is reputable published evidence with the pathology, risks and benefits well-described. Stem-cell and PRP (platelet-rich plasma) injections have been recommended for a wide range of conditions, mainly for the pain from osteoarthritis - but with unclear results. I am a bit surprised that it is being offered for a neurological condition like tinnitus, for which there is little Phase I or II data, but I can understand why someone would accept this treatment.

The pathology is hearing loss. Do you disagree with that?

 

[Dr. Ancill]

A 'yes' or 'no' answer is not appropriate. In about 20% of tinnitus sufferers, there is no measurable hearing loss so the pathology explains the hearing loss but not the tinnitus itself. About 10% of the adult population have tinnitus but 25% have hearing loss, so while there is a link - it is not absolute.

 

[Bndsmheowqhe]

PRP and bone marrow injections into my eardrums. Two weeks worth totally 72 injections.

Where and how? This needs its own thread.

 

[ajc]

Where and how? This needs its own thread.

Solsaem Clinic (Dr. Minbo Shim) Experience

 

[Lane]

Just one more example (below) of the numerous reports on this forum of drugs causing or worsening tinnitus. -- There's a LOT of dangerous otoxtoxic drugs out there; patient beware! -- (And don't be swayed by those who say--or suggest--there aren't).

I had tinnitus for 20 years already before taking Azithromycin totally unaware that it could cost me my high range hearing and quadruple my tinnitus (which it did last October after just one Zithromax Zpack). After 20 years of being so careful I couldn't believe that one pill (that I didn't even need) cost me so much.

It seems like everyone but my doctor knows that Azithromycin can make tinnitus worse especially for people with already weakened ears. ...... My whole new tinnitus nightmare started just like this when a doctor decided to give me azithromycin rather than give me a test for something telling me specifically it would not hurt my ears. I can't just trust a doctor anymore.

 

[Bill Bauer]

I have to explain the risk-benefit balance

If a patient thinks that getting louder T is equivalent to being burned alive nonstop for decades to come, then even the smallest increase of the probability of such a horrible outcome is significant, and the risk-benefit balance is easy -> No benefit (except avoiding significant chronic pain or avoiding becoming paralyzed from the neck down) is worth this risk.

 

[Bam]

If a patient thinks that getting louder T is equivalent to being burned alive nonstop for decades to come,

Lest we forget that doctors, with the exception of those who have been roughed up by this, treat this condition as almost a trifling joke so instead of treating tinnitus as the patient wearing a badly wired suicide vest, they treat us like we have a headache and a bad attitude to go with it.

 

[threefirefour]

I have been a member of the forum for some years and noticed that by most frequent reason to reply is in response to whatever 'new' breakthrough are so-called treatment is being discussed. Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done. While in some ways, this is correct, I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus. I also get particularly angered by the volume of 'fake science' and outrageous claims made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

Somebody wouldn't be a little scared they're about to lose their tinnitus patients for their therapy sessions would they?

 

[Jcb]

 

[Lane]

For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

For those reading this thread who have a problem with the above, you might be interested in a 5-Min. segment (link below) that was broadcast yesterday on the CBS program Full Measure, with Sharyl Attkisson. It's an interview with a Psychiatrist who's never prescribed a drug for his patients, but has spent a great deal of time helping those who have become dependent on psychiatric drugs get off of them. He also wrote a book entitled, "Psychiatric Drug Withdrawal". It's the only book written on the topic.

In the video segment, the author describes the approval process for Prozac, which he became aware of when he was appointed to the discovery process by the U.S. government as part of a lawsuit againsdt Eli Lily. He relates how the lead investigator discovered during the approval process of Prozac that it was filled with "addictive sedatives". It also was discovered to have "amphetamine type" qualities, which could make depression worse, make people agitated, angry, more prone to suicide, etc. The interview paints a rather unflattering picture of the Psychiatric and Pharmaceutical Drug professions, which often work in collusion with the FDA to approve drugs without adequate warning about how much harm they can cause.

The large number of stories on this forum of people whose lives have been devastated by these kinds of drugs is truly heartbreaking to read. -- Below is the link to the video segment. -- @GLJ; @sure2win; @matbrz; @Natalie Roberts; @Haylee; @Allan1967; @JasonP; @juliob;

Mad with Medication: A New View on Psychiatric Drugs
BY FULL MEASURE STAFF SUNDAY, MARCH 17TH 2019


Just one of those heartbreaking stories: (at THIS LINK)

So in October my doc took me off that antidepressant and prescribed Prozac and Ativan. Instantly my ears began to ring. I contacted my doc and he told me this can be a temporary side affect of the Prozac. He instructed me to try 2 more weeks on the Prozac and discontinue if it persisted. It did, so I stopped taking it. But the tinnitus never stopped.

It's been 3 months since stopping the Prozac and the tinnitus continues. I still take a very low dose of Valium for anxiety and have some depression. My life has been completely changed. I went from being a very happy and productive member of society to depressed, anxious, and dealing with tinnitus.

 

[Lane]

For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

Another heartbreaking account...

I've had tinnitus for over 10 years but in December 2018 and the end of January 2019 I had some bad reactions to antidepressants that doubled my volume and possibly gave me me hyperacusis.

 

[OnceUponaTime]

And if studies are not performed, we never will. And if there's no financial interest, the studies won't be performed. What exactly are you proposing here? That researchers work for free, or that we shut up and don't discuss what's being released until the "experts" on Mount Olympus decide that we may?

Maybe if you vote for Susan Shore's research paper to be published she can get the Financial interest/support you speak of.

Just saying.
​

https://www.statnews.com/feature/stat-madness/bracket/
@Jcb lol..

 

[DaveFromChicago]

Response to BAM:
Perhaps this stubborn, unfathomable refusal to appreciate the seriousness of this condition is due to an ENT Doctor's defensiveness regarding the admission of an absence of any sort of effective treatment.
Those CBT advocate's utter ignorance of this condition is revealed when it never occurs to them that each and every one of us has already had to develop a versatile, stress management/self-counseling program just to be minimally functional (and even get out of the front door in the morning). They would only be recommending what we have already painstakingly fashioned for purposes of sheer survival.

 

[DaveFromChicago]

When I contemplate seeing a CBT therapist, I imagine the circumstances wherein I call out an electrician and he says: "There's nothing I can do about getting your lights back on, so why don't you just learn to read until it gets too dark to see."

 

[Lane]

For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

These kinds of accounts (below) of anti-depressants causing or spiking tinnitus seem to show up on an almost daily basis.

BUT when the doc added Prozac for daytime anxiety -that was when my T spiked big time.

 

[Drone Draper]

When I contemplate seeing a CBT therapist, I imagine the circumstances wherein I call out an electrician and he says: "There's nothing I can do about getting your lights back on, so why don't you just learn to read until it gets too dark to see."

LOL. Someone else on here likened it to getting a plumber round to fix your toilet and he goes "I can't fix it, so here's a leaflet to learn to go shitting in the woods*

 

[DaveFromChicago]

One definition of my tinnitus: an internally imposed aural totalitarianism.

 

[PeteJ]

This post is in response to Lane's post which mentioned the FDA and Pharmaceutical/Psychiatric Drug companies, associations and corporations.
It's all about making big money, profit and continuing the status quo. There's a lot of collusion and the patient is not the priority or is an afterthought. It's only when they have to do damage control or there is bad PR for a drug or how a patient was treated that they pretend to be humanitarian.

I don't know what the solution is but people need to be more public, vocally, with those at the top. The watch dogs are not doing anything either. They don't have to answer to anyone. It's an epidemic problem. It's a lack of empathy in the fields in which you need the most.

 

[Lane]

It's an epidemic problem. It's a lack of empathy in the fields in which you need the most.

@PeteJ -- I couldn't agree with you more. I find it interesting that (apparently) most psychiatrists and even other doctors looking at treating depression, anxiety, etc. almost always look at some kind of drug first. -- To me, that's an almost sure way to start disempowering their patients.

Why not look at things like diet, dietary supplements, and other lifestyle modifications? Or look at whether something in their environment (such as mold or smart meters) might be having a major effect? Why not take a look at those, and see whether incremental changes can start making a difference? -- To me, that an almost sure way to start empowering their patients.

I find it almost anguishing at times to watch how various kinds of dangerous and expensive drugs are promulgated by conventional health care providors, and inexpensive and often very effective alternatives are almost completey ignored.

 

[Lane]

Seems to clearly show diet is far more important than taking anti-depressants.

Healthy diet improves depression in teens, study says

 

[all to gain]

@PeteJ -- I couldn't agree with you more. I find it interesting that (apparently) most psychiatrists and even other doctors looking at treating depression, anxiety, etc. almost always look at some kind of drug first. -- To me, that's an almost sure way to start disempowering their patients.

That's because they are 'drug men'. It's in their psyche to push drugs first as that's how they are taught and they believe in pharmacology as if it were their god. So they won't have anything said against their lovely Prozac or whatever. Plus they may be members of associations etc that are funded by drug companies.

EDIT: This is not to say that all drugs are bad, but it's the reason drs go to drugs first.

 

[linearb]

I love that the first post here makes some oblique reference to Neuromod, which completely ignoring the very much researched based efforts ongoing at UMich and UMinnisota and then calls it all "false hope" when there's a bunch of us on this forum who have directly responded to these treatments and showed improvements in objective tinnitus volume measurement in published RCTs.

You know what triggers me? Doctors acting like they have some magical or special occult understanding of things, and generally not taking patients own views seriously. Doctors are glorified car mechanics. When I've had a mechanic tell me something that was flat out crazy, I just fire them and find a new shop. I have approached medical care in the same way, and after some false starts I have a good and compassionate medical team that understands my specific situation, largely give me reasonable autonomy in decision making, and above and beyond all, never say anything to me that's dripping with condescension the way half of the posts in this thread are.

The internet has its downsides; it's also allowed patients to communicate in unprecedented ways, and have different expecations about what kind of communication, compassion and care they should expect from their doctors. Doctors who fall short in those regards are the old school, and they will go away, as "fire your doctor if they suck, because they're just glorified mechanics and you can find a better on online" becomes the new norm. My own medical team seems very woke on this issue. Once when I showed up at a neuro office with a couple RCTs printed out in my hand, the (60 year old!) neuro told his assistant, "see? This is how things are now, this is the new normal. Patients can research things, and will often show up with much more complex questions or ideas than they used to. The medical field must necessarily adapt to this reality".