Cmspgran

Cmspgran

Podcast Patron Benefactor
Member From United Kingdom
Messages
170
Reactions
544
Points
271
Joined
Last seen
Viewing thread Sea Pharmaceuticals — Oral Neurotherapeutics for Tinnitus, Epilepsy, and ALS

Profile posts Latest activity Postings About

  • N
    Royally depressed. Hyperacusis has improved but reactivity is bad and variable. There are days I cannot listen to the radio at 50db without the tinnitus screaming over the top of it. How has your week been @Cmspgran
    daydream
    I'm new to the forum sorry if this isn't the right spot to reply, still learning how to navigate it.

    I have a similar problem too Nick. My workaround was using an equalizer on my computer. I removed all frequencies higher than 5000 hertz so the offending frequencies wouldn't trigger the sound distortions. I use my computer for listening to all digital audio now as it is now the only viable way.
    Cmspgran
    Really sorry to hear @Nick47 , I know first hand the mental toll reactivity can have. Mines not great tbh it's so variable, you still trying a mix of treatments? Do you do any quiet hobbies that can try to take some of your mind off?
    daydream
    I got my reactivity to resolve. High quality fish oil, Magnesium malate and astaxanthin. I think these play a minor role in helping. Protecting my ears religiously and avoiding almost all sounds for a few months worked. had more to say. hit char limit, will make intro post. Does your own voice create the distortions?
    N
    @Cmspgran New routines would be getting some part time work in again. I'm self employed and had been working this yr upto September. Then back in the gym. I have asked GP about 10mg Nortriptyline and waiting to hear back. Other than that crack on with house jobs I was doing. I had to suspend these due to noise levels. Even sanding was too loud.
    N
    Just checking in on you. Are you back in the gym? I'm feeling a little more miserable with it getting dark at 5pm. My pain and loudness hyperacusis has been better the last week. I now need to mentally get engaged in life a bit more again.
    delta784
    hey how is your distortions
    Cmspgran
    Hi @delta784 my distortions n haven't completely gone but they're nowhere near as bad as the first 6 months. Still get morse code beeps over certain sounds.
    N
    How are you @Cmspgran ? Still expirementing with the patches? How is your life outside of work? Gym? Running? Dating? Family etc?
    View previous comments…
    N
    Did you ever have loudness or pain hyperacusis? @Cmspgran It took 2 years last time. I was coping with moderately severe tinnitus to a reasonable degree but now completely dysfunctional.

    What do you do with clonazepam, is it 0.25mg or higher if you can sense a tough day? Adjust doses to the need kind of thing?
    Cmspgran
    Never had pain hyperacusis but definitely have mild loudness now to certain things like dishes. My main issues where dysacusis , this has gotten 80% better, horrific reactive tinnitus in the left ear and worsening of general tinnitus - louder and more tones. Whatever time I first wake so say it's 5am or 7am, I'll know how bad a day it'll be.
    Cmspgran
    If looking good I'll take 0.25mg, if I know it's gonna be a tough tough day I'll take 0.5mg and then another 0.25 after a shower.Don't underestimate the difference getting your body into a deep sleep makes to a good/bad day. See what your deep sleep is doing over a week on a Fitbit or similar.
    Juliane
    How are you dear friend?
    Cmspgran
    Good to hear from you dear friend, I am still not in a good place, quality of life significantly worsened. On meds and trying various other things but not happy, how about you?
    Juliane
    I am so sorry to hear that... I was hoping you would have improved a bit. But I know what you mean as for quality of life. Since tinnitus I have developed other health issues, and I am constantly anxious because of it. I so wish I could calm my nervous system but I feel it's almost impossible to calm it down. Are you still able to work?
    Cmspgran
    I'm still working and not prepared to quit until I'm bedbound, how about you? So sorry to hear of your other issues Julianne, as you once said when it rains, it pours. What have you tried for calming your nervous system down?
    Zigs
    Hey, did your morse code calm down at all?
    Cmspgran
    It went away and has come back, absolute nightmare. What's your symptoms?
    Zigs
    Just constant noise in my ear like someone is pressing an alarm button over and over or something. No idea what it's about!
    Cmspgran
    Was it noise induced initially?
    Zigs
    I just spotted that you are in the Merseyside area - same! Not the quietest place to live haha. Hope you're doing okay today :)
    Cmspgran
    Hi fellow Merseysider, sorry we're meeting in this scenario but hope you're doing ok as well. Would much prefer to be in the countryside!
    Zigs
    Same!
    ErikaS
    Hey @Cmspgran , read your posts about the lidocaine patches and was rather intrigued! Have you continued at all following the temporary drop in hearing? Been in a spike for a lot of the summer and go back to work tomorrow, need something to help with my sound reactive component.
    Cmspgran
    Hi @ErikaS id followed your story too, so can appreciate and relate to your suffering. Sorry about your spiking, I'm certainly nowhere near on the straight and narrow either. I've stopped for now and mainly relying on clonazepam, the patches definitely were working but the drop in hearing really freaked me out. Probably something to do with conduction as Nick said but still too nervous to use them again.
    Cmspgran
    I've found high frequency noise from dale snales channel masks my reactive tinnitus, took a while to find the correct sounds but worth a shot?
    M
    Hi @Cmspgran - I saw that your T is very much like mine - in the sense that it is reactive morse-code like beeps that ride on the back of other sounds (especially white noise type sounds for me). May I ask what background noise you use at night (if any)? I've tried sleeping in dead quiet, but my T keeps waking me up, and white noise just exacerbated the morse code loudness. Thanks!
    View previous comments…
    Cmspgran
    How long have you had your symptoms and how did they come about?
    Andrew40
    Hello friends in misfortune. I have Morse code against a background of chorus and other sounds in one ear, and shrill monotones in the other. Very reactive noise. I can't go outside if you can do it very well. I've been staying at home for 3 months
    RunningMan
    All the OTC meds, trazodone, and hydroxyzine along with many supplements haven't helped my sleep. Only zolpidem (Ambien) seems to work. I take it about everyday, but use it in the middle of the night sublingually trying to keep dose under 3 mg. I use a "thousands of crickets" video from youtube overnight.
    Juliane
    Hi dear @Cmspgran. How are you holding up? I am sorry, I am losing all hope. I cannot cope with this anymore. It is too much. I hope you will heal completely and soon <3
    View previous comments…
    Cmspgran
    I feel your pain, don't give up you've been amazingly strong and I know you'll continue to be. I wish we had some sort of in person support group if we all lived in the same country!
    Juliane
    @Cmspgran I want to quit my job and go to the country side too. This winter has been so long and painful
    ZFire
    @Cmspgran , stay strong. I'll sure your distortions won't be an issue for you down the line. You'll see some kind of resolution. it's rough I know, but you'll get there. Cheers.
    Juliane
    Every time I see that sweet cat of yours, I feel happy and sad at the same time. He/she looked so cute! Hope you are OK ❤️
    View previous comments…
    Juliane
    Might just read that book...Sounds interesting. Does it help you?
    Cmspgran
    I find comfort in reading peoples accounts of suffering severe illness and injury and finding a way to continue and it talks about that quite a lot. Sounds sadistic but I'm sure you know what I mean!
    Juliane
    I understand. Makes sense.
    Juliane
    Happy new year dear @Cmspgran Hope you are OK given the circumstances?

    I am terrified as in a few weeks it will no longer be allowed to work from home at the company I work with. I wanted to ask if you go to the office for work and how do you handle that with bothersome reactive tinnitus?
    View previous comments…
    Juliane
    @Cmspgran Yes you are right. I need to play with completely open cards. I don't have a choice.
    Pinhead
    Honestly, I find that being in the office sometimes gives my brain more to focus on. I have severe, constant tinnitus, and slight hyperacusis, and the office environment hasn't been too tough. I have also laid all of my cards on the table with my bosses, and they allow me to play background noise/music in the office. It doesn't bother anyone.
    Cmspgran
    How do you cope with the constant reactive element? Sounds like you have kind understanding bosses which I'm really glad about for you.
    Andrew40
    Hi! Sorry, i mean reactive tinnitus...
    Cmspgran
    Hi Andrew, sorry for delay the only thing that I have found that makes any difference for reactiveness is clonazepam.
    Andrew40
    Hello, I know that you also feel bad from jet tinnitus... do you know of any cases of cure (at least partial) of such a problem?
    Cmspgran
    Hi Andrew, sorry don't understand what you mean by jet tinnitus.
    Cmspgran
    Thank you to all those that have offered me kindness and words of comfort as well this year. Only fellow sufferers understand.
    View previous comments…
    Juliane
    Beautifully said ❤️
    Juliane
    Who knows, perhaps years from now we will randomly meet somewhere in the real world both only having tinnitus as a distant unpleasant memory because it has improved for both of us!
    Cmspgran
    Wouldn't that be something. I know you've been struggling as much as me lately but stay strong and keep going into 2024. We all need each other to lean on.
    Cmspgran
    Wishing everyone I've conversed with this year a better 2024, 2023 has been the worst year of my life.
    Juliane
    Same for me. Never had a more horrible year. I am almost afraid to hope for a better 2024 as hope can be devastating. But I do hope for a better new year for both of us, for all of us.
    Juliane
    Sorry to ramble on your wall, but I have been thinking if the fact that we are still working might be making us worse? Have you thought about this? I know it's easier said than done but what if we just took a "break" from the world and work for, say, 2 years and moved somewhere quiet, would we become better? I am seriously considering doing this.
    View previous comments…
    Cmspgran
    You don't have to apologise you can post anytime you're want to reach out on my wall, same for anyone here. I've had the same conversation with my sister just as this started I'd moved careers and in my current state I'd be off work if I wasn't mainly working from home so it's like fate in a twisted way, but I'd said I need a year off to try and recover and she agreed.
    Cmspgran
    I just can't afford it, part of me thinks it'd be a good idea but then part of me thinks would it be case of just wallowing in your own misery , whereas at least with work you still have some structure and purpose?
    Juliane
    @Cmspgran I understand. I have the same thoughts. It is so damn devastating to deal with something that continues to be horrible and life-shattering - with no end in sight. Just so difficult to know what to do.
    Cmspgran
    Flipping between the perils of dysacusis morse and reactive electrical buzzing tinnitus. How does anyone get past this!
    Juliane
    Hey there ❤️ Have the morse code tones reduced?
    View previous comments…
    Cmspgran
    I'm unsure what to do at this point, I'm so sorry you are having to lead the same life, I can't offer you much only that I totally understand how you feel and daily torment of it all. None of us deserve this, I've tried to be a good person, but not good enough it seems.
    Juliane
    @Cmspgran I think that you being able to tolerate online meetings better is a sign of a small improvement?

    I am so sorry too. About all of this and for all of us. I still hope that one day we'll be able to tell each other that things are a lot better. AND I am sure you are a good person. Bad stuff happen to good people all the time :-(

    Sending you good vibes and wishes ❤️
    Cmspgran
    Sorry @Juliane didn't see this, you are a really kind soul and I wish to God that however long it takes we can be sharing tales of success in some form whether it is 12 months away or more.

    Sending you good wishes and vibes back for the week ahead, keep fighting and keep staying strong, we're all in it together ❤️
    Cmspgran
    Developed morse code tones in both ears, at different pitches on top of reactive electrical screams. I just want my regular tinnitus back!
    View previous comments…
    Juliane
    Oh no :-(
    Stayinghopeful
    Sorry to hear this brother. Is it Mask able? My machine gun/morse code is only maskable by dale snales 13000khz masker.
    Cmspgran
    Thanks @Stayinghopeful it is maskable, the left ear is around 1000hz and the right 2000ish, this is on to of multiple sine wave tones (which I'd always had) and electrical reactive fizz to external sounds in the left. I use Dale Snales sounds too.
    Cmspgran
    Reactive tinnitus is the utter pits, fellow reactive sufferers how are you doing? What's helping and what's not?
    View previous comments…
    Cmspgran
    So sorry @ErikaS I can relate totally but your case sounds even worse than mine. Stay strong, I pray to god we can all improve at some point soon.
    GG_Ear
    Mine improved for 3 weeks in July and would only spike if I spoke wearing earplugs. I think it was because the 2-3 weeks prior I spent most of my time at home and wan't exposed to loud noise.... however in August it came back.
    Stayinghopeful
    Mine hates showers, driving and noise lol. It's the most stupid frustrating condition.

    Mine doesn't go above any sound it just spikes from the above, like fans and things are fine.
    Cmspgran
    What an utterly rubbish year, lost my most precious cat last night, catastrophic tinnitus takes ahold, relationship breakdown, 2023 f'off
    View previous comments…
    Cmspgran
    Thank you @Michael Leigh you are always so kind with your words. I'm hoping for better times ahead.
    Juliane
    So so sorry @Cmspgran. It is horrible to lose a loved pet. And very sorry about your relationship too. When it rains, it pours... 2023 can go f... itself. You seem like a kind person. Better days MUST come our way soon! ❤️
    Cmspgran
    @Juliane my dream would be we are all posting how much better we are in 12 months time on here but it just doesn't feel like that's going to happen for me on current progress. I shall remain hopeful for us all!
    Cmspgran
    Who's currently dealing with pretty bad reactive tinnitus? What are you doing to improve? I'm almost at the 4 month mark and no better...
    View previous comments…
    4Grace
    @Cmspgran i am not sure if it was last noise trauma, Meds, anxiety when I was off the meds, the place where I stay during the day. I'm 50. I can't see how to do this. Honest to God don't see how. I don't know how long I can sustain the worsening. Sorry for the negative post. If I continued to stay inside I would have gone insane the same.
    Cmspgran
    So sorry you are feeling this way, I can completely relate I'm 40 and have wasted years with other health issues in the past and now feel like here I am again, life wasting away. Don't be sorry for being negative I can relate and understand to how you feel, reactive tinnitus is ten levels above regular T and I would give anything just to go back to how I was.
    4Grace
    @Cmspgran - it's the best of the ADs for T. I think my problem is that mine really reacts to food. I can't see how being on it would not impact my T. Honest to God I trend worse daily. I have reached that insane loudness point and I know it can get louder because I have had scary fleeting tinnitus. There is no mercy with this thing. I feel my case is a little unique.
    Cmspgran
    What a rollercoaster tinnitus can be a couple of reasonable days, followed by a horrific day, no rhyme, no reason. Emotional torture...
    View previous comments…
    Cmspgran
    No, working from home has been a blessing I couldn't have coped 5 days back in.
    Cmspgran
    It does involve lots of teams calls but for me it beats going back to the classroom as given what I'm currently going through I wouldn't have been able to do it. I currently work as a Business Analyst, there should be remote jobs that don't involve lots of calls I'm sure, what about things like video editing or graphics, coding?
    Cmspgran
    I'm finding it hard to keep going even with a remote job as it's a daily rollercoaster of anxiety and despair but I think it's really important to keep going.
    Cmspgran
    Depressed..
    View previous comments…
    Juliane
    I know how you feel. I am guessing that your new job may be stressing you. It did for me, it challenges the entire system. Please hang in there. The working week is almost done.
    Cmspgran
    Thanks Sarah, been out on two walks today to try and get some form of relief, just can't escape the ringing. Why must we all endure this torture. Hope we all have a better day tomorrow.
    SarahMLFlemmer
    Yeah, the only escape seems to be sleep. It's insane. =[
    Juliane
    Hi @Cmspgran Just wanted to check in to see how you are doing? Hope the new job is working out well for you!
    View previous comments…
    Juliane
    Hi Paul,

    So happy to hear you are seeing a bit of improvement! Hope it continues to improve even further.

    I will definitely check out the YouTube video. Looks interesting.

    I have not really been experiencing any improvement unfortunately but I am trying to do the "right" things: eating healthy, exercising moderately and avoiding stress. It is a bit rough at the moment. But have to try and stay positive.
    Cmspgran
    Sorry to hear you are going through a rough patch, coincidentally the day after I wrote those messages above, I had a terrible day and felt back to square one. How many months has it been for you now?
    Juliane
    @Cmspgran I have had T for many years but the worsening came after a loud firecracker on New Years Eve...
    Jupiterman
    What phase of education are you in?

    Do you use any ear protection at work? Eg musicians earplugs?
    Cmspgran
    Hi Jupiter man nice to meet you. I teach secondary which is 11-18 but soon to be leaving for a new career. I don't need plugs at work as not around loud noise.
  • Loading…
  • Loading…
  • Loading…
Top Bottom
Back
Forums
Members
Donate
Menu