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CPPS, hyperacusis, TTTS, tinnitus, neck pains, dizziness.. any hope?

Discussion in 'General Discussion Subforum' started by chintand17, Jul 26, 2023.

  1. chintand17

    chintand17 Newcomer

    Hi There,

    I am a 32 year old.. life was perfect, I had an amazing social life, family, amazing career, physically extremely fit ...but life took a turn..10 months ago...

    - I think i have had high performing anxiety for years (undiagnosed) and i was always told that I am a sensitive person.
    -A couple of years ago i developed this habit that particularly on Sunday’s i would not be able to fall off to sleep and constantly get up with a urinary urgency. This was fluctuating and over a period of 5 years, i developed ‘sunday scaries’ and was never sure what was going on. There were periods it would completely go away. I also developed a fear to sleep due to this.
    -Long story short, in Sep ‘22 after a few months of external stressors, i developed urinary urgency constantly and was diagnosed with something called ‘chronic pelvic pain syndrome’ (CPPS).I had taken a medication called norfloxacin which is considered ototoxic but no one has ever reported ototoxicity
    -Due to the diagnosis, i believe i started become chronically anxious as there isn’t a medical cure to CPPS and the symptoms were extremely debilitating (urinary urgency, testicular pain, abdominal pain)
    -This was followed by a period of dizziness that lasted for close to 3 months (non-stop) and it went away when i was on holidays for example which made me believe it is anxiety.
    -I fell into a chronic anxiety cycle due to my health and in January this year, out of nowhere, I suddenly realised that my colleagues phone was unbelievably loud
    -Fast forward, it was confirmed that I have hyperacusis and that meant further anxiety or the noise from the brain MRI may have caused it?
    -Over the 7 months; i have been on escitalopram, clonazepam and Amitryiptline which have been helpful to some extent but now i am finding it hard to get off them, been to 4 audiologists, 3 ents (my hearing is completely fine),I wonder if the MRI caused the hyperacusis? I had my first symptoms 10 days after the MRI but i was chronically anxious going into the MRI or Norfloxacin which some consider ototoxic? Confirmed by a few drs that it isn’t ototoxic.
    -I have now seen an onset of persistent tinnitus in one ear adding further to my anxiety
    -I have seen some improvement but its been extremely challenging mentally to adapt to my new lifestyle (limited social life, avoiding restaurants, pubs)
    -I even had to downsize my wedding..
    -My therapist believes its a central sensitisation issue due to my anxiety as both my illness are due to the underlying anxiety. Believe it or not, i am more anxious of my health than anything else! I also a high performing cognitive rigid person apparently in my career, personal life etc..
    -I am also noticing Tensor Tonic Tempani (TTTS) symptoms with Jaw pain. My ears are constantly fluttering with noises and even with my noises
    -My inner ears keep fluttering with most noises which i understand is not harmful but it is extremely debilitating.
    - I have agitation with "sudden" noises since they sound louder now . Even if they actually don't seem louder, the sudden noises agitate me. Not always but sometimes
    -Ear pain in the ears when i use my phone, or when people laugh (ifs pretty random)
    - When I put on my earphones, even at low volume I feel this "ache"
    -Generally everything seems louder to me
    -Developed this ‘agitation’ with people sneezing, clearing their throat (like my brain sees it as a flight to fight response)
    -My ears feel tired if there has been constant conversations by the end of the day
    -To add to my anxiety, i have also developed TMJ disorder with constant jaw numbness, clenching at night. This is extremely confusing if it is a primary effect of all my ear conditions or a secondary effect?
    -I have constant stiffness/neck pain around my SCM / Trapezius region.Apparently I also have mild arthritis in my neck..
    -CPPS symptoms include persistent urinary urgency, sitting pain, discomfort after ejaculation (i am doing everything to address it like no coffee, no alcohol, pelvic stretches, relaxation etc, low intensity exercises but nothing seems to help..)
    -My latest hearing test shows perfect hearing and LDLs of 90-100db. I just can't make sense of any of it
    -Its a vicious cycle : cpps = anxiety = hyperacusis = more anxiety = more psychosomatic symptoms..

    is there any hope to get out of this ordeal…? These chronic illnesses are life changing
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    Let’s start with your last statement “chronic illnesses”. None of these things have to be chronic, not a single thing you listed is an illness. You mention you were diagnosed with one condition on your list, did anyone else diagnose other items?
    Giving “names” to symptoms (even my Dr’s” legitimizes symptoms in our brain. They convince us we are “sick” and need medical care.
    Honestly, every single symptom you mention seems tension related. Almost every single symptom you list has been experienced by others here, and many have become well!
    The key is to look at your perfect life, your emotions and stress. You do mention you became stressed. The idealization of perfection, the seeming mystery as to why we all of a sudden seem stressed ( you are now recognizing it wasn’t so sudden) are many things Dr. John Sarno who coined the term TMS and discovered it’s mechanism in his patients (and himself).
    The first step to healing, if you have not yet done so is to read one of his books. I suggest Divided Mind since it discusses many symptoms. He discusses some of the psychology and physiology of pain ( still not fully understood or accepted in general medicine). There are two free programs at this website, the Pain Program which is an older version of Alan Gordon’s Pain Reprocessing or the SEP: structured education program choose one, and do the lesson days as described or slower. Don’t rush or speed up, it won’t help.
    These programs do not treat your pain, they address the underlaying component of why your mind feels it needs pain. Once those components are eased, most often do are symptoms. It takes time, self-care and patience. Learn to treat yourself as kindly as you treat your family.
    Everything physical your are experiencing can absolutely be caused by anxiety ( simply another TMS symptom).
    You are in the right place!
    Programs found by scrolling down the tmswiki.org front page. So are links to success stories.
  3. chintand17

    chintand17 Newcomer

  4. Cactusflower

    Cactusflower Beloved Grand Eagle

    Hi @chintand17
    Remember: you may not have any “disorders” they are simply symptoms of stress -Dr. Sarno explains this well in his books, which is why it is good to read or listen to one. You are stressed.
    You are stressed and also blaming yourself “hard to be a good husband” etc. That my friend is a heavy load of worry.
    More stress!
    Your resistance to acceptance is not your logical brain. It is the anxious, overthinking protector trying to keep you away from the painful emotions and realizations of self: the self you created for the world to see, the things you learned in the past that no longer serve you - the fear that your true self is somehow unacceptable. The most amazing thing is that these things can all slowly melt away over time.
    I thin the SEP, the slightly longer program here will serve you well. It allows you to experience journaling by free writing your inner most thoughts with total abandon (and tear it up and toss after), meditate, and other forms of self-regulation and emotional release. It guides you through slowly believing, slowing down and realizing NONE of this is your fault. You can begin to heal. It takes time and patience.
    You can even learn how to use your real rational mind by reframing the self-limiting thoughts and beliefs and begin to open your mind and transform to s new way of thinking. Away from the idea that something is “wrong” with you. Away from the idea that you are “sick”.
    It is absolutely astounding what some folks here have healed from. Here’s @miffybunny’s incredible story of success!
    https://rsds.org/i-recovered-and-so-can-you/?fbclid=IwAR3sf6gCV6Vqu8Ac13ju5cVZP123pj2ZnLWfXvvv-I1uYIn9aUyC9frrjP8 (I Recovered and So Can You! - RSDSA)

    You can do this!
    JanAtheCPA likes this.
  5. chintand17

    chintand17 Newcomer

    Thank you Sir / Madam. This means a lot, I am reflecting on your words and they are extremely powerful. Its been ~7 months and I still finding hard to accept, finding hard to not be my normal self. The internet has shattered by hopes on recovering from hyperacusis, they say it is almost impossible to get rid of sound sensitivity. Some miracles happen but its not really in your hands ; you just need to get lucky. If I heard a lot more of recovery stories, I would be convinced and more motivated. I am not able to surrender, still trying to find answers..

    I think the first step is to believe there is no structural problem, I am close but I am still hoping that the medical community can help me, probably not.

  6. chintand17

    chintand17 Newcomer

    Is it normal to have SO MANY symptoms? I have been given all clearance for any tissue damage, i believe it is to do with my emotions, thoughts, feelings. But i find it hard to believe SO MANY PSYCHOSOMATIC symptoms can exist for one person...
  7. Cactusflower

    Cactusflower Beloved Grand Eagle

    Oh, yes! It is.
    I have had at least 25 symptoms AT ONCE! Dr. Hanscom had a similar amount of symptoms.
    Sensitivity to noise is not uncommon in degrees. here is a good discussion about noise and your nervous system: https://www.tmswiki.org/forum/threads/sensitiveness-to-sound-tms.18454/ (Sensitiveness to sound TMS?)

    this person had an incredible list of symptoms, including sound sensitivity, and recovered. http://www.tmswiki.org/forum/threads/a-physicians-tms-story-rsi-hyperacusis-and-much-more.7658/ (A Physician's TMS story - RSI, Hyperacusis and much more.....)

    Doubts are pretty normal when you begin to mull over tms. It seems incredible that our inner world can evoke such symptoms.. but your mind is doing a) everything it can to keep you “safe” from whatever it’s deemed dangerous. It’s a weird combination trying to distract you from the real problem while sounding the alarm that there is a problem.
    A wonderful place to start is by asking yourself several times a day “do I feel safe?” And “do I feel loved” - no stories or explanations: yes or no. See which gets the most yeses or no’s. You’ll begin to get a glimpse into why symptoms do what they do.
  8. chintand17

    chintand17 Newcomer

    thank you so much. I agree, some days i certainly believe in TMS but some days i believe that addressing the structural issues that exist can alleviate my symptoms. For example, i have developed persistent neck pain for 8 months on the left side and to date i have found a diagnosis. There is normal generation/mild arthiritis, but i have actual physical pain with trigger points. Hard to believe this is a MBS?
  9. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

  10. chintand17

    chintand17 Newcomer

  11. chintand17

    chintand17 Newcomer

  12. buurman

    buurman Newcomer

    Hi chintand, this is some longwinded stuff, so I hope you like random internet dissertations by strangers, I made an account after lurking for ages just to respond to you.

    Try to internalize that symptom+(fear+attention)=chronic symptom. Giving something fear and attention just increases stress which winds your nervous system up further, increasing symptoms. You could have a symptom arise from something structural but temporary, it heals but the symptoms persist because you gave it so much fear and attention you rewired your brain to have that symptom or be extremely sensitive to that symptom. The TMS approach can help you unlearn that but it takes time, commitment and persistence.

    Í had a period where I had most of the symptoms you describe; baddddd tinnitus like an alarm going off in my head, hyperacusis to the point conversations were unbearable let alone actual loud noises, TMJ/jaw issues to the point where I could only eat soft things and I was just in pain generally, fluttering in the ears constantly and weird feelings of pressure, etc etc.

    A joyful concoction of shite.

    At this point in my life, around 2 years ago, I was 31 at that point so i am a similar age to you, I wasn't aware of TMS but they surely my symptoms were all tension related, I had a difficult year long breakup going on with a person who really deserved all the best (which made it all tge worse) whilst doing a really tough technical project at uni. All I wanted is for it to go away, but this is the wrong approach, which held me back. Instead, try to focus on giving yourself the space and rest you need to heal, and focus on being okay even with the symptoms. You have them now, and you want to be okay now, so it isn't crazy to try to approach it from that angle.

    I did recover, I still have tinnitus, but it's very mild and I have fully habituated (so will you, everybody does you just have an influence on how fast), I can sometimes go a whole day without noticing it and when I do notice it it doesn't bother me anymore. It's like background noise to reality. My jaw still gets tense but not to a problematic degree, and there is no more hyperacusis. All in all yes I have some ear and jaw issues still, but everybody has something like that, it doesn't impede me. I am okay with my tinnitus and hearing loss even despite being a musician, so I think you can learn to be okay with perfect hearing and tinnitus :)

    However, my recovery took much longer than needed because of my approach of NEEDING it to go away, right there, yesterday. It basically didn't resolve to any serious degree until I arranged my life in such a way to take out many of the stressors (finally fully breaking up, moving, exercise a lot, take a 3 month break from uni). When I did that my brain (and thus body) slowly gained the breathing room needed to feel some semblance of being okay even with the symptoms.

    And that there is the key, your goal should be to be okay, not to get rid of the symptoms. Paradoxically the symptoms will diminish when you stop caring so much. You exacerbate them by winding yourself up like that, and from that they get so severe you cannot live with them. Do you see the issue there? You have a symptom, sure, it's poop, but with all this fear and attention you rewire your brain to amplify the symptom to an unbearable point. So the issue is not the symptom but your reaction.

    I remember a moment where after months of insane suffering with that stuff and being DEADLOCKED on the tinnitus (only feeling somewhat okay when it was a bit less severe, being so dejected when it inevitably returned, over and over again) I finally was able to kind of forget about it for the first time, I was having a beer, playing a game and had put on my masking sound in the background. And I noticed I was able to forget about that dreadful noise, it was somewhat okay for the first time that it was there and even clearly present when i focused on it, because I could in that moment for the first time somewhat easily forget about it again. That became easier and easier over time, which slowly took away tension which slowly took away the hyperacusis and lowered the tinnitus. Now like I said it's just totally not an issue, cruisin'.

    Your goal should be to be okay even with hyperacusis and tinnitus and TMJ, because they are manageable but not if you throw them so much attention and fear like you are doing now, the severity of your tinnitus, TMJ and hyperacusis might realistically be 95+% the result of you giving it all that fear and attention. I made my recovery soooo much slower by focusing on going to doctors, , jaw physical therapist, ENT, researching supplements that could help, new treatments that might come out, blablablabla. What you need is a sense of safety, in spite of the the tinnitus and hyperacusis, and this is something you can build up. Think of having a busted knee, yes it hurts, but because you know it's gonna be okay you don't give it so much fear. That way you can forget about it and you can be okay even with the pain. Tinnitus is like that, TMS is like that. It's just that with tinnitus and TMS it's harder to not respond with fear, and it's more diffuse and slower to respond because you have to unlearn the fear response even with the symptoms going strong. But the approach is the same and you can do it, you gotta learn to not take your brains fear response so seriously every time it decides to throw a hissy fit over a symptom.

    What I have also learned is that there does not need to be a perfect fit in order for the TMS approach to work for you, TMS is just and idea about how the mind and the body interact that seems correct. Scientifically it has some proponents and some detractors, but it doesn't need to be ironclad to be effective, you don't need a laser fit mechanistic explanation for your exact symptoms. It's a developing field and there are a bunch of ideas and theories floating around, what they have in common is the recognition that the mind and the body are integrated entities and that it is fully possible to have psychosomatic symptoms and that it's also possible to do something about them. I first heard about TMS from my therapist because I had a super stressful period around my graduation with a lot of weird fibromyalgia like symptoms(tingling everywhere, hot cold itchy wet dry itchy aching sensations all over my body, crazy brain fog, vision and balance issues) and I was freaking out i had fibro or MS or Parkinsons(neurologist did not agree). I had those symptoms for half a year or so, and when my therapist suggested the 21 day program here I resisted for a long time. I starting the program a couple times but I wasn't buying in because pain was only a small part of my problems and not so severe ("I really don't have much pain so I don't have TMS so what I have must be horrible neurological condition x"), I finally committed, started really following the program and I reduced those symptoms by 95% in within a week (!!), isn't that crazy? Here i was all this time just enjoying all these nice sensations looking for drugs or doctors to fix me please whilst that solution was available.

    After that I was doing better yes, but I still had so so much anxiety and developed chronic muscle tension, mainly in my arms and hands. This got to the point of having a hard time with fine motor control, feeling crazy sore all the time like you've gone to the gym yesterday, tremors in hands, etc. Again this went on for months, anxiety going out of control, this time I was reaaaaaally convinced I had Parkinsons, of course my program supervisor was one of those super rare young Parkinsons cases so yes that helped things massively..... Tried starting the program again for a few days here or there but it wasn't having the same effect as last time so I was like "See, it's not for me this TMS thing, this is muscle tension from something neurological not chronic pain!" And yet, when I finally committed and followed the entire 21 day program, along with committing to progressive muscle relaxation every day, I made huge huge progress. It's been a couple days now since I finished the program and yes it's still here every day but it's severely diminished. First my fear got better(that was was the most helpful in feeling better), then the symptoms got better. I will continue, I guess I will read one of the books and repeat the program. This stuff has a hold on me, sure, but I now have so much evidence my body responds physically to stress like that. Cool.

    I saw it way back years ago when I had crazy heart anxiety, once I stopped being scared of my heart/chest/arm symptoms they went away. I saw it with the tinnitus and TMJ, they got so so much better when I stopped responding with fear. I saw it with the fibromyalgia like symptoms, they went away 99% when I stopped responding with fear, and now I am making great progress with the muscle tension by again learning to respond with less fear. I could never believe that stress was causing that, always thought it was the other way around, until I finally dared to believe and then I started getting better. Some chicken and egg bullshit if you ask me. It's all the same, call it what you will, TMS, habituation, anxiety, polyvagal theory, whatever.

    You and me, our bodies respond physically to stress, the more we internalize that and respect that, address that stress, instead of doing the whole fear-funloop, the better we get. I suggest you try the 21 day program here, and feel free to respond here or just PM me if you just wanna chat with someone. You're gonna be okay, but you gotta commit and work on it.
    Last edited: Aug 3, 2023
    BloodMoon and JanAtheCPA like this.
  13. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    OMG, @buurman - I don't just Like this post, I LOVE it! I wish I could Like it 10 more times! There are so many good things here I don't even know where to start. Worthy of bookmarking and revisiting and re-reading it multiple times to let it sink in.

    Okay, let me start by saying that you, my friend, are ready to post a success story. You could literally just copy and paste big sections of what you have taken the time to write for @chintand17 who I hope can really hear and internalize what you are saying and make the 180-degree mental shift that is needed to move forward instead of remaining stuck.

    (my emphases in bold)
    So well put. Ultimately everything else is a distraction, and distractions turn into obsessions, and obsessions leave you stuck, spinning your wheels forever, ruminating over things that will never lead to the equanimity and acceptance required for healing.

    Brilliant way to reframe this concept! Instead of focusing on the details of all the things you don't want, visualize instead a less focused, more constructive, and self-compassionaate future in which you are, quite simply, not suffering. You're okay.

    LOL - too true :hilarious:

    Great to have you on board, @buurman - I hope you will stick around!

    BloodMoon likes this.
  14. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    @chintand17 -I'm serious about re-reading this post. You can click on "Bookmark" which is a link at the bottom of all posts, and @buurman's post will appear on your profile so you can go back and read it again. And again. And yet again.

    This is the information that YOU, along with everyone who continues to suffer from chronic symptoms, need to incorporate if you are willing to let go of fear and start to get back your life.
  15. buurman

    buurman Newcomer

    idk about a succes story yet, but i've made real progress :)
    I hope @chintand17 gets the message, he or she deserves some succes, tinnitus, TMJ and hyperacusis are tough.
  16. chintand17

    chintand17 Newcomer

    I am lost for words. I cannot express your gratitude to take the time to message me. I have been digesting all of this over the weekend. I will send you a direct message if that's OK.
  17. chintand17

    chintand17 Newcomer

    Thank you for constant motivation. This community is giving me the digital love and support that I need!
    JanAtheCPA likes this.
  18. Indiana

    Indiana New Member

    Reading this was such a big help to me. I am suffering from TMJ and have done it for years. I have read every book on TMS there is and received lots of good advice on this Forum but sometimes you just look for new approaches or angels when nothing seems to work. Not wanting to get rid of the symptoms (because i think it is a hopeless fight anyway in my case) but just being comfortable. That was really good advice. Thank You

    JanAtheCPA likes this.
  19. TG957

    TG957 Beloved Grand Eagle

    From seeing so many cases of TMS and successful resolutions of those on this forum in my 7 years here, it is obvious the more diagnoses you accumulated in various body parts, the more likely what you have is TMS. All these complex diagnoses are often just labels associated with the symptoms but not with the actual disease, and disease is that one overstressed nervous system which sends signals of distress through various symptoms because it is present everywhere in your body!

    I highly recommend that you read all success stories on the respective forum, and you will see that most people had multiple symptoms and long lists of diagnoses, and they recovered.
  20. chintand17

    chintand17 Newcomer

    Thank you my friend. I am closing on the acceptance path of TMS.. Staying present and surrendering..

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