DeanD

DeanD

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  • 4Grace
    I know tinnitus seems to have no limits. I am wondering. Mine is loud and seems to be getting worse. I wonder if there is a limit with how high it can go for some people. I mean if I plug my ears it's sounds loud as hell. Cannot put in ear plugs for that reason, I want to just go out and enjoy life. People talk about habituating to the noise. Habituating to life restrictions is much more difficult.
    View previous comments…
    DeanD
    @4Grace - sorry I have only just seen this. Yeah with my ear plugs my tinnitus louder and more intense. How do I handle it - good question, I got in to the mindset of its loud tinnitus or stuck homebound still listening to it. Yes it may increase 20% more but I can do more. Distractions are good.
    Conversations are difficult though when out. Often I can't hear people as I am hard of hearing at the best of times lol
    DeanD
    @4Grace - I found things can still be enjoyable again. Ive got back in to things I thought I never would, and look forward to doing them again.
    I was up til 1am last night engrossed in a hobby and didnt realise the time!
    We have good days and bad. On good days I try and enjoy things more, on bad days I claw through til bedtime on the hope tomorrow will be better.
    4Grace
    @DeanD - Thank you. First post. sounds so nice. I have had all days of clawing through until bed time hoping that the next day will be better. Hearing protection makes mine so much louder I cannot explain, now I think I am bound to home and running out of steam.
    DeanD
    Took a walk in quiet countryside for 5mins, with headphones, and my ears are ringing like I was in the front row of a 110db rock concert
    View previous comments…
    H
    I wonder if increased heart rate is playing a part
    S
    @Hardwell mine seems to become louder after being strenuous.
    DeanD
    @Hardwell - I kinda used 'countryside' a bit loosely to paint a picture of quietness, when in reality it was walking to the end of my road, which is small and between fields. I'd slowly walked for around 3 mins, so not heartrate I don't think for me. Happens when I'm out driving too. I don't leave my house without wearing headphones to give some protection - as earplugs are difficult now
    H
    Hi buddy - I have an EMG on Friday - kind of worried about it.is it sore? Did it affect your T? How you getting on with your travel plans. Hope you're good
    View previous comments…
    DeanD
    @hopefuldede - those trips sound great, be just the thing you need!
    DeanD
    H
    Hey Dean - all clear! I was nervous as hell getting it done. Going through a shitty spike tonight though was out running today and one of my buddies screamed for no reason right beside me. Doing some self talk here telling myself it will pass shortly.
    DeanD
    Is anyone else's t so loud that you can't actually hear the fridgefreezer whirring in an otherwise silent kitchen because of it?
    View previous comments…
    DeanD
    ZFire
    Same thing for me as well, @DeanD. The tinnitus overrides the fridge and freezer noise, making it extremely difficult to hear even in a quiet setting. I can still hear whirling sound of the freezer, but it intermingles with my tinnitus heavily.
    H
    This is where it confuses me when we talk about loudness of one's T. Some occasions the fridge masks my T, but most of the time I hear it over the fridge. Although I can still hear the fridge clearly
    DeanD
    Tinnitus louder. Breathing difficult, swallowing a challenge, throat spasms. They execute as punishment, but not euthanise out of compassion
    View previous comments…
    ErikaS
    @DeanD we have a few clinics over here in the USA that are called "Functional Neurology" .. I just spoke with one that sounds very good and they speak with International clients. I honestly feel like this is who you need to talk to next, when "all the scans/bloods look fine but you are not" ..
    ErikaS
    DeanD
    @ErikaS - thank you so much, it is very much appreciated. I am going to look in to them!
    DeanD
    Anyone else seen the latest Neuroscience news and how neurologists and scientists are seeing 'major' improvements of T with LLLT??
    RunningMan
    I hadn't, but I have now.
    ErikaS
    I just recently spoke with a functional neurologist and she shared she always uses some form of LLLT with tinnitus patients. Some here on the forum had nice results in the past, some had none, while others had worsenings.
    DeanD
    I remember reading two very long threads on here re LLLT when mine first started, and was tempted to buy the device being recommended. I didn't in the end.
    First legitimate science news site I have seen highlighting this.
    Shame no one is capturing enough data to know who it works for and who it doesn't. It won't be as random as it seems I'm sure.
    ErikaS
    Hey Dean, have they done any brain stem specific tests with you? I am sure they have. I know you didn't have a brainstem stroke, but as we know in the community, our auditory traumas have great affect on the brainstem. I just came across a study that used tDCS to improve swallowing function post brainstem stroke. Link is above. In any case, maybe something like this could help gain swallowing function back?
    View previous comments…
    ErikaS
    Many neurologists here in USA run EEGs to detect things like seizure activity, so EEGs are part of standard neruo practice I would think. However, f you have already had an EEG done with the Brain clinic, I would ask for those results to at least provide to your neuro doc and then they could compare if they were to do a repeat EEG.Happy to hear you're at least getting those calories in. Are you able to swallow pills?
    DeanD
    @ErikaS - my neurologist has a copy of my EEG but he just glanced over it and never really paid it much attention. But I have the original from Brai3n so a before and after may be a very good idea!
    Ive not tried pills. My SaLT said maybe thats something I can try with her on my next appointment.
    My goal for this week is to eat chicken nuggets and a sausage roll.
    Im being told to stay away from bread though
    DeanD
    @ErikaS - when I put earplugs in I get a tickle and pull in to my throat which causes more uncomfortableness (I feel its a nerve reaction), but doesn't help when you have reactive tinnitus and need to go out.
    Over the ear headphones do the same thing, surprisingly.
    I also find it much more difficult to swallow with ear plugs in
    DeanD
    I tried to perserve through the t and h, kept going with the swallowing issues but I can not taking breathing difficulties on top of it
    View previous comments…
    ErikaS
    @DeanD I completed the brain mapping on Friday, meeting with him tomorrow to discuss findings and a protocol moving forward. I am staying neutral and will have many questions. I just can't get too hopeful about much these days in fear of something not benefitting my situation.
    Any new tests you completed yet?
    DeanD
    @ErikaS - it does at least sound promising, and a step towards actually trying to do something about it.
    I read with interest as little exists in the UK for something similar. We have Brai3n in Belgium but they weren't brimming with optimism.
    Today I had another (and hopefully last) upper endooscopy which came back clear.
    Barium swallow (again) this Wednesday.
    ErikaS
    @DeanD good luck with the barium swallow, let me know how that goes. I know they have done all the nerve tests they can but man something just points to a dysfunction somewhere like vagus nerve and autonomic system dysfunction. Does neurology find any reason to do an EEG?
    DeanD
    Loud ear crackle I have been compaining about can be heard by others! Put my ear to someones today and they heard it too Mechanical surely!?
    View previous comments…
    ErikaS
    DAO supplement helps the body break down and metabolize histamine. And I am so sorry I didn't answer before now, sometimes I miss in my notifications a mention or it doesn't show up. @DeanD
    DeanD
    @ErikaS - I have had so many tests going from endoscopy, to EMG, painful physio etc... but the one I just can't do is the nasal camera. Tried 4 times now. Physio yesterday said very tight throat spasms seem to be coming from towards my ears - just can't find any case studies linking the two.
    DeanD
    @ErikaS - oh no don't apologise for the delay, Im very grateful and appreciate all the help and support you have been giving me.
    How are you doing?
    H
    Hi @DeanD how have you been?
    ErikaS
    Wondering this too, @DeanD , thinking of you often.
    DeanD
    Hi @hopefuldede and @ErikaS - things haven't improved that much unfortunately.
    All neurological tests came back clear, CT Scan clear. SaLT diagnosed me with laryngospasm, but breathing still an issue. Able to eat scrambled eggs and hoops.
    Going for throat physio this week.
    T and H still an afterthought, and I am doing a lot more without giving them much thought.
    How are you both?
    Sammy0225
    How you been brother
    View previous comments…
    S
    Sending so much good thoughts and positivity your way @DeanD no one deserves to go through what you are going through. I really hope you get an answer and soon.
    Sammy0225
    I'm so sorry to hear that @DeanD I'm baffled at what would be causing the spasms! I really want you to be free from all this crap. As for me I'm hanging in there man having loud days mixed with quiet days, just taking it day by day.
    DeanD
    Hey @Sammy0225 - no one seems to be able to work out the root cause, so although almost all medical staff have given up I have a SaLT who is perservering and trying to help me alleviate the symptoms with throat exercises, pushing me with certain soft food and sending me for physio.
    Crazy times!
    DeanD
    Choked on pureed food for first time, and choked swallowing water. Swallowing feels so weak. Dysphagia 10x worse than t and h.
    DeanD
    Need to go London tomorrow for tests. Either taxi for 2hrs each way or train and underground for 1hr each way. What would you do?
    View previous comments…
    DeanD
    @ErikaS - unfortunately although I am pushing things along, everything is running very slow. My neurologist referred me for an EMG three weeks ago to rule out MG but still another week until he is back from vacation.
    I did ask in the meantime is there anything I can do or take and was told 'no'.
    The CT scan is actually a cancer check as it was a way my GP could get me seen quickly (but not neurological related).
    DeanD
    @ErikaS - every next test is taking 2-3 weeks (and all private as NHS is 40 week wait) and all the while the symptoms are getting worse.
    My GP out of desperation ordered the CT scan to check for a tumour, and a full suite of blood tests - which have all come back ok) .
    My GP can't prescribe anything without neurologist - and right now he's recommending diazepam (even though he suspected MG!)
    ErikaS
    I give you so much credit for marching on with tests. This is all very scary, @DeanD , and I just hate that you and others have to be so strong when you are faced with such debilitation. I don't know if you're a faithful person, but I will specifically pray that an answer is found for you very soon.
    DeanD
    Prescribed Prednisolone in case myasthenia gravis is diagnosed (my guess is vagus nerve dysfunction). Dont know how it will react with t!?
    DeanD
    Severe H and T are brutal. Dysphagia and breathing issues soul destroying. Together, leave you absolutely suicidle.
    View previous comments…
    ErikaS
    I have had quite a rough mental week, but I don't want to complain given your situation. Meeting with my psychiatrist tomorrow and will out a med plan in motion, depression is winning and I am unable to pull myself out.
    DeanD
    @Strawberryblonde - it sure does help taking a break from here at times!! Keep pushing forward!
    And thanks :)
    DeanD
    @ErikaS - no problem, just thought I'd ask in case.

    Im sorry you're feeling this way. Im so glad though you managed to get away on vacation though, it's such a huge step!
    I saw your post and have my fingers crossed for you with your psychiatrist and the meds - I was there trying to pull myself out not long ago and know how tough it is.
    I know you will get there!!
    DeanD
    Car alarm randomly went off whilst sitting in the car just now. 5 secs, and spike. Can't eat or drink, breathing a problem. Why live anymore
    View previous comments…
    DeanD
    @ErikaS - its tough, I'm not going to lie. I find it so strange that with thousands of case studies and posts on here I can't find a link between t and h and this.
    Perhaps stress or meds, but again nothing noone on here hasn't had or tried.
    Happened too soon after onset of h and t, as well as stress and meds, to not be connected.
    ErikaS
    @DeanD like I said to you some time back, I feel like something triggered an autoimmune response or neurological inflammatory response. All I can do is pray that they figure it out soon for you AND have something to offer you for relief
    DeanD
    J
    Has your spike from your ear plug molding improved at all? Im beginning to suspect this is what caused mine along with COVID. Hope you're well.
    DeanD
    @jake_g_t I felt that it took around 2 weeks, maybe just over, but did seem to go down (not sure whether to baseline). The increase in ear crackle though did not diminish
    DeanD
    Getting terrible throat spasms, sores, tightness and swallowing issues. All started 1.5 months ago. Any link to ear nerve damage?
    View previous comments…
    sakrt
    @DeanD Have you done an upper GI endoscopy? Did you get results from barium swallow? First thing that came to mind was esophageal stricture; dysphagia, however the throat spasms is a separate issue (I think).
    DeanD
    @sakrt - yes I had the upper GI endoscopy 5 weeks ago along with biopsy and showed nothing. The barium swallow results showed nothing either.
    DeanD
    @ErikaS - hope you're enjoying your vacation!!!
    Just one other piece of information for when you are back, I seem to have lost my gag reflex, and worried this is pointing towards vagus nerve dysfunction
    DeanD
    In a bar. Music playing. 70db recorded. Wearing custom ear plugs between 30db and 40db (high freq) hoping not too much! Thoughts?
    View previous comments…
    Ryan Scott
    @DeanD Are these the custom plugs that gave you the spike? What kind are they?
    DeanD
    @Ryan Scott - yes the very same. Unfortunately I cant remember the brand. I visited a local audiologist who recommended them, but they turned up in a plastic bag with no branding. All I know is that they protect up to 39db high freq and up to 30db low freq. If I find out I'll Let you know.
    DeanD
    @Ryan Scott - I will add that as much as I spiked, it gave me the confidence to get out more. I wore huge red Peltors anywhere outside whereas now I have used the discreet ear plugs to drive, grocery store - and even away for the weekend with friends and to bars this weekend for the first time in 6 months (never thought Id do again!)
    DeanD
    Is being double plugged when driving being protective for sound reactive t or making things worse due to occulsion?
    View previous comments…
    DeanD
    Well @UKBloke I have been using both silicone and custom molded ear plugs (up to 39db and high freq block) as well as Peltor ear protection.
    I spike easily, and inside the car is 70db.
    It seemed practical but wondering now if counter intuitive
    S
    I use my 20db hearprotek plugs sometimes when out in the car. Dulls the sound of the road noise without the occlusion. Also like @UKBloke said they let the ear breath.
    Sammy0225
    From my own personal experience using pro in the car spikes the shit out of my Tinnitus. The occu effect gets me every time
    DeanD
    Anyone know of any good quality speakers to use for work calls rather than the poor laptop speakers? I have high freq sound reactive t
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    DeanD
    DeanD
    @Sammy0225 - I can use my personal cell phone but all my work calls are done through Microsoft Teams - I couldn't see an immediate speech to text option (like YT has) but there must be an option so I can keep sound low but be aided with captions. I'll get researching!
    Jupiterman
    @Sammy0225 that CC captions for cell phone seems like a good idea. Do you have the name of the App?
    ErikaS
    Any improvement yet, @DeanD ??
    View previous comments…
    DeanD
    Looks like I may have been a little optimistic with the softening of t, after a short quiet call with gf it went from hissing back to tonal after sleep and ear crackling now even louder (if that was even possible).
    Throat tightening back to being really bad, plus woke after 1 hour sleep gasping for breath jumping out of bed, which is the first time in 2 weeks.
    Just had enough now. Sorry for the rant!
    ErikaS
    I feel like this is definitely a domino affect of aggravated nerves that send other agggrivated/fight or flight signals to nerves and muscles around the neck and face. So so wrong, and what is SO beyond frustrating with anything brain related, progress isn't always linear. I really hope you can get some sleep and it reset for you !
    DeanD
    @ErikaS - yes that has been my suspicion but trying to get diagnosed for that is near to impossible, especially as I had a camera down my throat two weeks ago and nothing was found.
    I think before when this happened it was acid reflux, this time though I do believe a nerve issue, as the feelings are different.
    Am not going to taken seriously now - and I thought I was suffering when it was just severe t and h!
    DeanD
    I still have no idea if I have hyperacusis? Internal sounds are very loud, but external noises are not. Tinnitus spikes to 25db in earplugs!
    View previous comments…
    Sammy0225
    By higher spectrum of noises I mean, telephone calls, Street noise, creaking door, computer keyboard inputs, fans. The list goes on but I feel if you can make progress with higher frequency noises your spikes should follow suit. Sorry about the custom molds I definitely think you can still make decent progress.
    Sammy0225
    From reading your last few post I think the molding of the ears plugs irritated the TTTS which in return messed with reactivity and Tinnitus. This new increase in Volume sounds like a spike from inflammation from the custom fitting. Give it a week or two it should calm bk down @DeanD
    DeanD
    Yeah I agree with all you've said @Sammy0225, and makes sense. I'm around more noises, although still with ear plugs half in (which strangely seems to help), and have started back to work online a few hours a day, so hopefully if there is desentization of higher frequencies it can come through that
    DeanD
    Tinnitus jumped in volume overnight after sleep. Twice as loud as yesterday, such a noticeable increase. Can't hear things I could before.
    View previous comments…
    S
    Ear nerves are probably sensitive from the fitting and will take more than average to get back to a normal state. @DeanD hope the prednisolone does its thing of you manage to get it :)
    Marshall
    Prednisone is like playing Russian roulette with tinnitus. I lost when I took it. Don't be to quick to make a decision
    DeanD
    @Marshall - Im sorry you got worse on it, and I appreciate the heads up
    DeanD
    After 5 months I was meant to return to work today. Was feeling better. T now worse than ever after custom ear plug mould fitting a week ago
    View previous comments…
    ErikaS
    @DeanD this could be an awful spike that will take a couple weeks to calm down. As it seems so nerve related and easily inflamed, maybe consider something like Gabapentin that others have had some success with. I myself considered it and always know it's an option to bring up. I know you've been steering clear of meds, but just trying to think of something that could help you as you're in your current state.
    DeanD
    @ErikaS - thanks for reaching out. Yes, its soul destroying. I really should have just been focusing on getting back to work to provide for my family instead of sodding about with ear plugs. I just wanted 25% of my life back.
    I am trying to cling to that hope, but this spike is a little different to all others.
    DeanD
    My previous spikes all had an element of ups and downs. This one doesn't and has been constant.
    Also the ear crackling increased at the same time and now so loud when swallowing it can hurt. Ear crackle increases have happened twice before (Dec and Jan) both times it increased the pitch of tinnitus, but they have never come back down.
    Now the pitch is shrieking and piercing, I don't really have much confidence.
    DeanD
    I was in a good place and destroyed my life once again getting custom ear plug moulds. Tinnitus screaming much worse than before. Not coping
    View previous comments…
    Marshall
    You'll get used to it. You'll figure out a way to take them out without suction. I promise. Also how did the molding mess you up? Did they yank it out?
    DeanD
    @Marshall - well I havent actually been able to try the plugs as they are still being manufactured. I dont think I can get used to this one. 5th worsening in 5 months and this one is piercing.
    No the procedure was relatively quiet, no suction when removing the moulds but it was uncomfortable when the putty was squeezed in to the ear canal
    DeanD
    It was later than day I noticed tinnitus had ramped up, and the ear crackling much more severe.
    DeanD
    Can you really get a major spike from a custom ear plug mould fitting when there was hardly any sound involved??
    View previous comments…
    S
    i use muffs to hoover the mess up at work so i know the feeling of being looked at lol. What works for one on here has the opposite effect on another. Hopefully this setback goes as quick as it came @DeanD
    Ngo13
    I got a spike from my custom earplugs fitting but it went down back to baseline after a week or two.
    DeanD
    @Ngo13 - it's tough living and learning with this. Had I known a spike was even possible I wouldn't have gone ahead. I thought it was safe and my reactivity had gotten better. There was no noise, and I've only ever increased with loud noise.
    Worst part is it has made my ear crackle sound so loud it hurts my ears.
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