A Condition Worse Than Tinnitus: Interstitial Cystitis

[LukeYoung]

I also have interstitial cystitis. That and tinnitus together is life ruining. Amitriptyline is my savior.

 

[Lane]

I also have interstitial cystitis.

Hi @LukeYoung -- Apparently some people have improved their interstitial cystitis with ozone therapy. In case you're interested, the section below on bladder infections is from the book The Ozone Miracle, by Frank Shallenberger, M.D. In the book, the author talks about how a person can set up their own system of ozone treatment at home, but there are also easier options. You can purchase things like ozonated olive oil capsules that a person can take internally to get started. Here's what he had to say about bladder infections, with a focus on interstitial cystitis:

Bladder Infections
Bladder infections are usually best treated with antibiotics. If they are resistant, the bladder insufflation technique can be used in addition. But the most incredible use of the ozone bladder insufflation technique is for a very severe bladder disorder known as interstitial cystitis (IC). In 2015 I presented a study to the Cuban Ozone Therapy Society of 18 patents with severe and long standing IC that had not responded to any form of therapy.

Of this very difficult group 55% were completely cured and 30% were substantially improved after only three weeks of ozone therapy. However, because it is such a difficult and painful problem, patients with IC should only treat themselves while under the supervision of a practitioner trained in treating this dosorder. You can find doctors trained in ozone therapy at (American Academy of Ozonotherapy).​

 

[LukeYoung]

Hi @LukeYoung -- Apparently some people have improved their interstitial cystitis with ozone therapy. In case you're interested, the section below on bladder infections is from the book The Ozone Miracle, by Frank Shallenberger, M.D. In the book, the author talks about how a person can set up their own system of ozone treatment at home, but there are also easier options. You can purchase things like ozonated olive oil capsules that a person can take internally to get started. Here's what he had to say about bladder infections, with a focus on interstitial cystitis:

Bladder Infections
Bladder infections are usually best treated with antibiotics. If they are resistant, the bladder insufflation technique can be used in addition. But the most incredible use of the ozone bladder insufflation technique is for a very severe bladder disorder known as interstitial cystitis (IC). In 2015 I presented a study to the Cuban Ozone Therapy Society of 18 patents with severe and long standing IC that had not responded to any form of therapy.

Of this very difficult group 55% were completely cured and 30% were substantially improved after only three weeks of ozone therapy. However, because it is such a difficult and painful problem, patients with IC should only treat themselves while under the supervision of a practitioner trained in treating this dosorder. You can find doctors trained in ozone therapy at (American Academy of Ozonotherapy).​

I take Amitriptyline and pumpkin seed oil. Works for me.

I have no infections at present. I've had cystoscopy confirming my bladder wall hemorrhages. Not much else you can do. I'm on top of my condition, others aren't so lucky.

 

[AnonymousPie]

I take Amitriptyline and pumpkin seed oil. Works for me.

I have no infections at present. I've had cystoscopy confirming my bladder wall hemorrhages. Not much else you can do. I'm on top of my condition, others aren't so lucky.

A cystoscopy cannot reveal hidden, embedded or biofilm infection. Chances are if your interstitial cystitis started off with infection, it's actually chronic UTI. It can be treated. You need a PCR test and microgen test and to send your urine sample to specialists who deal with this for microscope. I'm in process of the same.

 

[LukeYoung]

A cystoscopy cannot reveal hidden, embedded or biofilm infection. Chances are if your interstitial cystitis started off with infection, it's actually chronic UTI. It can be treated. You need a PCR test and microgen test and to send your urine sample to specialists who deal with this for microscope. I'm in process of the same.

Never had a UTI in my life. So I don't believe so, not all interstitial cystitis is the same. My bladder wall haemorrhages.

 

[tormentingtandh]

I believed that I had interstitial cystitis when I had a bladder problem last year that was actually benign. Basically, I wanted to go to the toilet every 5 minutes. My bladder also hurt when I was sitting on a chair. It was horrible, worse than tinnitus. I was so obsessed and scared that it made me less aware of my tinnitus.
Fortunately it went away. The urologist I saw gave me a drug to relax my bladder neck, and it worked.

What was the name of the medication your doctor gave you to relax your bladder neck? Did it affect your tinnitus &/or hyperacusis at all?

 

[SarahMLFlemmer]

A cystoscopy cannot reveal hidden, embedded or biofilm infection. Chances are if your interstitial cystitis started off with infection, it's actually chronic UTI. It can be treated. You need a PCR test and microgen test and to send your urine sample to specialists who deal with this for microscope. I'm in process of the same.

I did long-term high dose antibiotics for "embedded infection" and now I am worse off than I was to begin with.

 

[LukeYoung]

I did long-term high dose antibiotics for "embedded infection" and now I am worse off than I was to begin with.

Unfortunately I put the "embedded infection" into the tin foil hat category.

Amitriptyline and pumpkin seed oil has been the best thing for me. Have you tried Amitriptyline?

 

[SarahMLFlemmer]

Amitriptyline and pumpkin seed oil has been the best thing for me. Have you tried Amitriptyline?

I'm actually taking Amitriptyline for sleep right now because of tinnitus.

 

[LukeYoung]

I'm actually taking Amitriptyline for sleep right now because of tinnitus.

And how is your bladder?

 

[SarahMLFlemmer]

And how is your bladder?

My bladder is not in pain right now, praise God, but I'm having some retention on it.

 

[LukeYoung]

My bladder is not in pain right now, praise God, but I'm having some retention on it.

Oh, okay. Some medications cause retention. Amitriptyline is one of them, this is why it can be helpful for IC patients.

 

[SarahMLFlemmer]

Oh, okay. Some medications cause retention. Amitriptyline is one of them, this is why it can be helpful for IC patients.

Do you also have IC?

 

[LukeYoung]

Do you also have IC?

Yes, unfortunately I have had it since I was about 22. The weird thing is that it started about 6 months after I got tinnitus.

 

[SarahMLFlemmer]

Yes, unfortunately I have had it since I was about 22. The weird thing is that it started about 6 months after I got tinnitus.

Super weird!

 

[bobvann]

I have both interstitial cystitis and tinnitus. Tinnitus is far worse (in my case, anyhow).

 

[crescentsky]

My interstitial cystitis is hormonal.

Interstitial cystitis flare up + tinnitus is possibly one of the worst combinations. But I deal with pain better than I deal with tinnitus so I rather deal with my hormonal interstitial cystitis than tinnitus.

 

[bobvann]

My interstitial cystitis is hormonal.

Interstitial cystitis flare up + tinnitus is possibly one of the worst combinations. But I deal with pain better than I deal with tinnitus so I rather deal with my hormonal interstitial cystitis than tinnitus.

My interstitial cystitis did not rob me of playing music...

 

[DebInAustralia]

I don't believe in interstitial cystitis anymore.

After a lifetime of suffering, I learnt about biofilm / embedded UTIs, and have successfully treated it with Chinese medicine (initially under the guidance of Prof. Malone Lee).

Diagnostics are unreliable.

Under the guidance of Prof. Malone Lee (UK), I bought a microscope and learned how to do my own freshly unspun cell count - which I did at the beginning to help diagnose and guide my treatment progress.

It isn't normal to have epithelial, white blood, or red blood cells in your urine (unless your epithelium is shedding).

Most practitioners will toss out a urine sample if it fails to demonstrate nitrates - and blame the rise in WBC on contamination. The medical ignorance is infuriating.

Grapefruit seed extract and biofilm disruptors (I used Pure Encapsulations) were the only things that ever worked for acute flares.

And yes, I had epithelial hemorrhages, too, along with brief improvement in symptoms after hydrodistention (because this releases embedded bugs).

Now, I am largely free of debilitating UTIs.

 

[Varda]

A lot of people with interstitial cystitis are convinced they have a bacterial infection. They throw all sorts of antibiotics at it and end up getting tinnitus from an ototoxic reaction to the antibiotics.

 

[BB23]

Diagnostics are unreliable.

Not just for this condition.

I heard online of a story where I live. A person visited 7 different doctors, including private ones, for his condition, and they got 7 different diagnoses.

 

[Zigs]

I was diagnosed with Interstitial Cystitis although I never had a cystoscopy. The thing that helped me most is avoiding trigger foods and going to pelvic floor physiotherapy. My pelvic floor muscles were very weak and overly tight, and I had to do a lot of work learning to relax them properly. I'd recommend seeing a physiotherapist.

 

[Zigs]

It's interesting how many people with IC or pelvic problems also experience severe ear issues. A homeopath once told me that the kidneys control the ears. It could just be a coincidence—perhaps IC is more common than we realize—but I do wonder if there's a connection.