Tinnitus & Interstitial Cystitis

Discussion in 'Introduce Yourself' started by Magpie101, Jun 4, 2020.

    1. Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      So I've had a moderate level of tinnitus for around three years. It's a high pitched ringing in my right ear, audible over most conversations. When this first developed I honestly thought I'd never be able to live with it. I'm a very anxious person and I struggle with normal life sometimes, let alone with this torment on top. But I amazed myself and with time and a lot of effort, I'm now (or at least was) totally at peace with it.

      This has changed as over the last few weeks I seem to have developed Interstitial Cystitis. All my UTI tests are clear and the docs don't know what's causing my bladder pain, so I've been told it's IC and I just have to live with it.

      I'm now back into a world of having to come to terms with a chronic condition that's driving me crazy and putting me in a lot of discomfort. What's worse is that it seems to be unravelling all the hard work I put in habituating to the tinnitus. I now find myself obsessing over the ringing noise,
      especially at night.

      I'm on the forum to find support and also perhaps find other people who live with both tinnitus and another chronic condition on top.

      M
       
      • Hug Hug x 1
    2. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      There is lots of awareness being raised for interstitial cystitis.
      https://www.ic-network.com/

      So sorry what you are going through. Consider trying to get a disability lawyer.
       
      • Agree Agree x 1
    3. bobvann
      Fiendish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      I suffer from this as well! I remember when tinnitus started. I was up all night. I have had problems since 2006. Tried DMSO, Botox. I just learned to live with it. I used to want to have my bladder ripped out. I am now kinda used to living with it. Tinnitus has made it feel like it was nothing...

      Just like tinnitus. I was told there is no disability for IC.
       
      • Hug Hug x 1
    4. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Hi, and welcome.

      I don't believe in IC. It is simply a label practioners use when diagnostics fail to find the root cause.

      In short, I suffered with a lifetime of UTI symptoms; rarely managing to grow bugs in a culture. I, too was labelled with IC. I am now completely symptom free.

      Since then, I have discovered that bugs can hide in biofilms. That is why commonly used tests fail to detect the presence of infection, and why antimicrobials in low doses, and in short bursts simply do not work.

      I was fortunate to find a compassionate and knowledgeable doctor in London, who specialises in testing and treating persons such as yourself.

      I will share more if interested.

      In short, biofilm infections can adhere to your urothelium and cause UTI symptoms. They can also embed into the wall of the bladder; essentially, hiding from your immune system, diagnostics, and antimicrobials. This has been proven through biopsies taken from chronically infected bladders.

      Urine cultures are inaccurate. Dip sticks even more inaccurate.

      Your symptoms are real, and most likely linked to a chronically embedded infection.

      Finding accurate information and support is the main issue. There are groups set up for patients of this UK based Dr, as well as a nurse practioner from the United States (who formerly suffered with *IC* herself, only to be cured when the root cause was finally addressed = biofilm infection)

      If you want more info, I'm happy to share.

      https://www.theguardian.com/society...ief-for-women-with-chronic-life-changing-utis
       
      • Winner Winner x 1
    5. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      The Reddit support group for Interstital Cystitis has memes about getting denied disability income.

      SSI's standards are extremely high, no amount of human suffering will get one disability income.


      Q: Why can't the bladder be surgically exposed while a doctor applies an anti microbial agent?

      A
      : Because medicine is all about the cheapest possible options. Behavioral therapies that force psychological rehabilitation and pain killers are cheaper then biological sciences. It's all about avoiding risk and choosing the safest option.
       
      • Agree Agree x 1
    6. AUTHOR
      AUTHOR
      Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      Wow, thanks so much, this was a real eye opener! My cultures are negative so my doctor is refusing me antibiotics and trying to give me medication for an over active bladder. This medication will affect my balance and make me unable to drive so I'm refusing to take it. I feel ignored because I know the symptoms of a UTI and I know that's what I have.

      I'm so happy that you finally found relief. Does this doctor do self referrals?
       
    7. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      LMAO

      it's probably just like "hyperacusis" in which many subtypes exist.
       
      • Agree Agree x 1
    8. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      I don't agree.
       
    9. AUTHOR
      AUTHOR
      Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      So sorry you've had to go through this too, it seems very unfair to have to cope with both T and chronic bladder pain :( I'm lucky in that I feel I've made peace with the T, but it took a really long time and whenever I'm run down or having a bad time (like now) I start to become hyper aware of it again. Have you thought about the long term antibiotic treatment available via the clinic mentioned above? I'm a bit worried about possible T interactions with long term ab use but will give anything a try right now
       
      • Hug Hug x 1
    10. AUTHOR
      AUTHOR
      Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      I'm in the UK and could probably get disability for my long term anxiety problems. I hope to avoid that route, I love my job and its really the only thing I enjoy in life. I'm actually terrified of having nothing to do all day apart from think about my T and bladder pain.
       
    11. LukeYoung
      Mooooody

      LukeYoung Member Benefactor

      Location:
      Toowoomba, Queensland, Australia
      Tinnitus Since:
      06/16
      Cause of Tinnitus:
      A loud Concert - Noise Exposure
      I have both also
       
      • Hug Hug x 1
    12. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Bad luck
      IC is really awful.
      Mine calmed down recently.
       
      • Like Like x 1
    13. bobvann
      Fiendish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      I forgot to mention I had 4 bladder distentions which made things worse. They did prescribe really expensive anti-inflammatories that was giving me hives & 0 benefits. I just stopped bothering when nothing helped (can anybody else see what a crappy and incompetent medical system we are stuck with with the lack of true help with both these conditions?) All we really have for tinnitus is pseudo TRT snake oil which practitioners are in for the Benjamins & MCBT which is even more useless. I am in Canada it would be expensive to go to London. I guess it's no different than folks going for Lenire. I don't really have bad bladder pain, just piss all the time. I don't help myself with consuming caffeine & red wine. It all started when I told my GP I was urinating a lot. I wish I kept my mouth shut. Tinnitus has made IC take a backseat.
       
    14. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      https://www.booktopia.com.au/cystitis-unmasked-james-malone-lee/book/9781910

      I see Prof Malone Lee (based in London) has written a book on this very topic.

      As an Australian patient of his, I was required to get a GP on board, who would then communicate with the Prof regarding diagnostics (unspun, immediate urinary cell count) along with treatment (I did Nitrofurantoin for 8 months, then turned to herbals and acupuncture with an eventual diagnosis of Lyme and coinfections)

      If you are UK based, you could try contacting the Prof at his London based UTI clinic. I'm not sure if you are closer by if you need a referral. I'm sure if you call them, they'll be able to advise.

      If you are wanting to see Malone Lee, I can put you in touch with his Facebook group, where you will find you are not alone!!

      Ruth Kritz is a nurse practitioner in the United States, who may still offer consults. There's an associated Facebook group for her patients.

      Nothing infuriates me more than the ignorance that surrounds biofilm UTIs. Many of us have been debilitated by unrelenting pain that has a very real physical, readily treatable cause = infection!

      I hope this helps you.
       
      • Like Like x 1
    15. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      So sorry.

      I've had a few hydro distentions.

      Would make my symptoms worse too.

      Prof Malone Lee said it would have been because the HD releases embedded bacteria into the bladder cavity, causing acute symptoms.
       
    16. bobvann
      Fiendish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      I can always go back to my urologist with this info... I did get acupuncture as well. It never helped. I have "habituated" to it. Now if I could with this *&^% tinnitus...

      On a more positive topic it is my 22nd anniversary today!
       
    17. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Feel for you Bob.

      All those years of unnecessary pain and suffering completely eliminated now for me with the right treatment and diagnosis.

      Good luck with your urologist. I saw 4 urogynaecologists and several GPS, before I found an integrative doctor who was thankfully, open to the concept of hidden infections.

      All the best.
       
      • Like Like x 1
    18. LukeYoung
      Mooooody

      LukeYoung Member Benefactor

      Location:
      Toowoomba, Queensland, Australia
      Tinnitus Since:
      06/16
      Cause of Tinnitus:
      A loud Concert - Noise Exposure
      I am on amitriptyline and it has helped ALOT. basically eridacated all my symptoms. Worth a try.
      If you choose to, start 10mg, see how you go.
       
      • Like Like x 2
      • Informative Informative x 1
    19. AUTHOR
      AUTHOR
      Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      Did you do anything particular or did it just do it on its own?
       
    20. AUTHOR
      AUTHOR
      Magpie101

      Magpie101 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown (stress)
      Oh that's good to hear. Glad you got relief! I'll mention it to my GP. Thx :)
       
      • Like Like x 1
    21. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Bad luck
      On it's own. It became softer.
       

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