Cmspgran

Cmspgran

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  • N
    Well, how have things been? Any changes in your condition or life in general?

    I'm rough. This setback is hitting me hard. ttts, waking up after 3 hours with it blasting and not being able to get back to sleep. Unstable - hissing/static - metallic shrill stuff that breaks me down. Loudness hyperacusis around 70db.
    N
    @Cmspgran Interesting. How much Pregabalin do you use? The Gabapentin certainly takes some focus off my condition and reduces stress. When did you drop the Gabapentin? Was the combo still effective over time? I advise you to make an appointment with the GP, tell them you are really struggling, what helps and be candid. You obviously have an understanding GP and honesty is the way forward.

    The first time I used Gabapentin, i bought it online. I am not advising you to do this of course.
    View previous comments…
    N
    @Cmspgran I was wondering if Gabapentin actually buffers the reactivity a little or just zonks me out a little so I care less. It's such a strange one to work out. It's still there but seems slightly less volatile. Your condition seems slightly better in terms of no pain or loudness hyperacusis, which I am currently experiencing. Is your condition unaffected by sound? Do you ever need to wear headphones for work meetings?
    Cmspgran
    So I don't really have severe hyperacusis, it's only certain sounds like plates clanking or kids shouting/dogs barking that make me wince somewhat. My biggest issues are severe multi-tonal tinnitus, I get zaps in the ear that also feel like a sensation (for me personally, these are the most disconcerting) and also certain sounds have morse code beeps over the top. The only element clonazepam or gabapentin has worked on for me is the zaps/electric sensations and horrible grinding noises, if I could permanently get rid of these I'd be able to cope.
    Cmspgran
    Just to add to your comment, the clonazepam no longer really works as can be expected and I'm not willing to go down the rabbit hole of upping the dose more and more - tried this anyway and deridders comment is correct in terms of u-curve diminishing returns. Can no longer get gabapentin but have sourced genuine pregabalin and I've come to the conclusion it doesn't help the symptoms but it just makes me care less it also gives me a deeper sleep which helps in actually coping the next day.
    N
    Hello @Cmspgran . Setback again. What's been occurring? Found anything useful? Patches trialled again?
    View previous comments…
    Cmspgran
    I agree and the more I read I think a significant element of our problems are hyperexictable nerves/central sensitisation gone wild. Gabapentin was a good effective drug for me, I just haven't asked for it again as convinced GP will pull me off clonazepam, potentially time for a mega slow taper off it. Keep your chin up too mate, good to hear from you.
    N
    @Cmspgran what did you find useful about Gabapentin? I wouldnt say it does much for the tinnitus, but does have a bit of a bufferring effect. Its good for stress and sleep, and taking the focus off it. I thought you had Pregabalin?
    Cmspgran
    I have a pregablin supply but it's not my own, it's good for sleep and the next day caring less. Gabapentin with clonazepam was potent combo for me personally it significantly reduced the variability and reactiveness of my tinnitus and the clonazepam dose could be reduced when combined.
    delta784
    I am thinking to use clonazepam same way you do but i am only 29 years old. My tinnitus, visual snow came after methylprednisolone intravenous which damaged my ears and brain it seems very odd reaction. Saturday is my off day where i usually go out meet my gf is it okay to take wednesday and saturday?
    View previous comments…
    delta784
    if you dont mind may i ask how old are you @Cmspgran
    Cmspgran
    Hi, I don't mind you asking I'm in my early 40s, clonazepam isn't an ideal drug to be on at all but if it allows you to function and continue to work my philosophy is then it's the only option in my case. Tough at your age but understand what it's like to struggle so much.
    delta784
    so daily 0.5 stopped working for tinnitus or anxiety? i know sedation affect goes away
    vilebubbles
    Hi! Did you try gabapentin? How was it?
    Cmspgran
    I did, combined with clonazepam it worked really well for a while but then lost it's effectiveness.
    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…
    Yellowblue44
    @Cmspgran hello! I wondered if I can ask you a couple of questions please. As I think we have something similar that's really bothering me. So mine started 6 months ago due to loud noise exposures. However 3 months ago I my symptoms worsened and I've seen no improvement whatsoever. When I go for walks now I hear like a heavy white noise . Part 1 of 2
    Yellowblue44
    @Cmspgran Even in an empty park I hear this. I also hear something similar when I watch tv on low volume. It's a like a white noise. Has this improved for you? The whole thing has made me housebound and I'm worried that I've seen no improvement in my loudness H or Reactive T. Part 2 of 2
    Cmspgran
    My dysacusis has improved but my reactive tinnitus and general tinnitus has gotten worse sadly. What was your acoustic trauma?
    Juliane
    How are you dear friend?
    View previous comments…
    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?
    Juliane
    Sorry for late reply, I did not see this message. I tried with yoga for a while which helped a little bit but had to stop going to the yoga place as they put too loud music on during the class. Now I try and do it from home.

    Do you have any routines for calming down your nervous system?
    Cmspgran
    Hey, I'm sorry I'm working back through all my missed replies, the only one I've tried is mindfulness meditation but I'm rubbish at sticking to it. I've been told to try yoga as well.
    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!
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