DeanD

DeanD

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  • ErikaS
    Thinking of you @DeanD !! Hope you have experienced some relief with at least one of the conditions you have been dealing with.
    ellees
    do you have experience with gabapentin? if so, did it worsen your tinnitus? (any update on the dysphagia?)
    ErikaS
    Hey @DeanD .. I just read your status and it pains me to read and know that nothing has improved for you. I have been quite distracted by life and don't come on here nearly as much as I used to. But, just wanted to see if one of the many specialists you saw ever discussed vagus nerve dysfunction with you?
    View previous comments…
    DeanD
    @ErikaS - I went for an allergy test and it came back with lots of things, I'm ruling them out, it's making some difference but depends what it does over time. At the moment its as much as the tightness in throat and breathing issues after swallowing as much as the swallowing - particularly the tongue.
    Ruling out iron, B12 and mast cell tomorrow.
    Had MRI recently, came back clear.
    DeanD
    @ErikaS - it's great you don't need to come on here much anymore and getting on with your life :)
    ErikaS
    I feel like I may have asked you this already, but have you looked into MCAs / severe histamine intolerance? People have developed this post Covid, this last time I had covid in beginning of Jnuary, my histamine reactions shot up and took a while to calm down. I still have moments where my throat and earws feel like they are swelling some when I drink or eat high histamine foods.
    DeanD
    Reactive severe T is so much easier to deal with than dysphagia. Never knew or could even imagine that, until I got both.
    View previous comments…
    DeanD
    @Kiyomi - thanks, Ive been fighting this dysphagia for a year now. Seen 20 consultants, every test, nothing shown so they won't offer treatment. Zero compassion. Lost 50kg.Liquid food only at best. It's a nightmare.
    Cmspgran
    Really sorry @DeanD you're one of the posters I think of regularly as you're going through the hell that is reactive tinnitus and all your other stuff. I'm in a bad place with my reactive tinnitus and dysacusis, now 9 months later and expected some improvements but if anything it's worse and the mental toll it's starting to take is not good.
    Cmspgran
    Thinking of you mate. I'm hoping the shore device works for reactive t, if I'm as bad in another 12 months and it's out, I'm considering flying to America im that desperate.
    H
    How is your t? Did it go down?
    DeanD
    @HopeForAll96 - not great unfortunately. No mine never really did go down to be honest. People certainly get more used to it after a period of time, and some it does reduce, it just hasn't as of yet for me.
    DeanD
    Need to go for an MRI. Been putting it off but can't now. Reactivity is a concern. Anyone tried an open MRI?
    View previous comments…
    DeanD
    @Jammer - my hospital will only do a closed MRI, but this is due to budget constraints. My other option is to pay privately for an open MRI and have the hospital review the results. I assumed it would provide the same resolution but perhaps not based on your answer.
    DeanD
    @Jammer - I have no GP, and no doctor to speak to. I either go along with the NHS standard MRI scan - or pay privately to speak to a consultant and carry out a private open MRI (cost about £1000 or $1200)
    Jammer
    I had an MRI in December to see if I had a stroke due to a hypertensive emergency. It was loud and it spiked my T, but I have since recovered to approximately baseline level. No stroke was found. This is n=1 advice.
    Heal82
    Hi @DeanD, have you seen any improvements in your ETD symptoms? If yes, what so you think caused these improvements ?
    View previous comments…
    DeanD
    @Heal82 - what noise do you have? I have a cracking (like whip crack) every time I swallow, and has been this way for over a year now. An ENT said it happens as the soft palette lifts when I swallow - but why the noise happens he had no clue (and considered one of the best ear ENT surgeons in the world).
    Heal82
    It sounds like someone's banging on my ear drums directly
    DeanD
    @Heal82 - sounds like a possible tempor tympani muscle contracting, or myoclonus, this sounds like a fluttering or maybe a banging on the ear. Mine is more a crackle, like rice krispies crackling in the ear every time I swallow or voluntarily lift my soft palette, or tense the eustachian tubes
    DeanD
    Was away for just three days, to try and feel as if I were living, and caught Covid. Hitting hard. Don't regret it, but timing sucks.
    View previous comments…
    DeanD
    @Cmspgran - its slowly getting better thanks. My main issue is my throat getting worse.
    Yeah I know a lot of people who have had it. Could have caught anywhere really.
    I did, I am glad I went. Only 3 days solo trip but it was enough to know I can fly, and I would do it again.
    Db on plane no greater really than in a car.
    My throat problem the biggest hindrence.
    Cmspgran
    That's really great to hear, is your reactive T improving? I'm in a right muddle, moved onto carbamazepine and it definitely helped lessen the reactive Morse tones but then created an additional electrical zap which was probably more annoying. Stuck now to know what to do best!
    DeanD
    @Cmspgran - unfortunately no, the reactiveness isnt showing any sign of improving. I haven't taken any medication since January, so I can't blame that any more unfortunately.
    DeanD
    T is getting worse. Nightclub volumes - I didn't think it was possible. I've run out of things to try. 1 year down and worse than ever :(
    H
    DeanD
    Hey @hopefuldede - thanks for sharing this, really thoughtful of you :) - I've wondered about long Covid but tbh I had Covid in Feb 22 and didn't really get rough, and when it went I had no issues whatsoever until the Microsuction in Oct 22 and then the throat issues Feb 23.
    I think as I never got long Covid symptoms, I'm not sure I have this, plus I am sure they have tested for MAST in one of my 87 blood tests! lol
    DeanD
    ErikaS
    I am just checking in on you friend. Any update on T and R calming down or med(s) decision?
    DeanD
    Hi @ErikaS - thanks for checking in :) - I've been staying away for a bit, and only back doing some flying research. I went away for a few days in a cottage - 8 hours driving - and whilst there I had two really good days. T turned to hissing for the majority. Now I'm back and it's back to being really bad. T tone is harsher and louder I think.
    DeanD
    @ErikaS - I have booked three flights for the next four months - and spontaneously considering a 4 hour flight this weekend - crazy I know! I am not enjoying things at the minute, and became very down again. I'm not enjoying life rn but it's bringing me down being restricted.
    No decision on meds, have decided not to take any for the moment.
    How are you doing?
    DeanD
    T became worse 4 weeks ago. Hoped was a spike but don't think so. Rain on roof made big changes. Higher pitch, louder, more intense.Very sad
    View previous comments…
    DeanD
    @gameover - that's really awful, and ANOTHER real case study as to why Michael Leigh should not run his mouth off promoting everyone do this as a type of 'treatment' when he doesn't have a clue what he is talking about. It can help some people but it is no treatment. I hope no one else is damaged by his stupidity.
    My new tone or change in tone never did settle down after the rain, it's been seven weeks now.
    DeanD
    @gameover - I don't actually think it's the ears that are damaged, and why ENTs and audiologists don't understand.
    T is in the brain, but it's the changes to the firing rates of neurons, which are much further up stream than the physical.
    I don't think noise is damaging our ears, but it is deteriorating protective mechanisms we have to dampen tinnitus or increasing the neurons responsible for the sound.
    gameover
    Yeah, it would be strange if that damaged the ears. OTOH, that incident resulted in changed T that really felt like coming from the ears, rather than inside the head, so I am not sure. I improved further from that spike, though my situation varies wildly. Some days are pretty good, some are horrid.
    DeanD
    Would TRT really be pushed as a 'treatment' if it didn't cost up to $5k and give huge margins. Would audiologists promote it if it cost $100
    View previous comments…
    DeanD
    @cjbhab - yes, and maskers have given many people their life back. Totally get it, and totally worth a couple of thousand or more - maskers are great for the very reasons you mention, but that isn't TRT.
    RunningMan
    @cjbhab Your feedback on the maskers is the most positive I've seen. If I had acted sooner, I could have gotten some that were about 1/2 covered by the insurance before I lost it.
    DeanD
    @cjbhab - would you consider your tinnitus to be variable and ever changing, or generally quite static and at the same volume and pitch?
    I read today that variable tinnitus usually has better success rates using sound therapy for suppression than fixed tinnitus - but wondered what yours was?
    DeanD
    In a bar - music in background at 70db - wearing custom molded ear plugs. Fingers crossed!
    View previous comments…
    ErikaS
    Omg I commend you for even leaving the house let alone going to a bar with your worsening! I hope you are able to enjoy and not get exponentially worse.
    DeanD
    @ErikaS - I'd been staying homebound recently and just noticed things getting worse. T was a 20 out of 10 when I got back. Sleep has returned it to its 'usual' 9 out of 10 in loudness.
    With this and the FND I'd been close to the edge as of late, sometimes just need to be normal - just for a little while - to feel alive
    DeanD
    Quiet to heal or noise to desensitise. Wish there were some guidance on the best approach to follow for reactivity that isn't stupid TRT.
    (I am against it purely due to ridiculous cult like pushers who claim it doesn't work without the counselling aspect - and if that's a requirement then it simply doesn't work).
    DeanD
    Heavy rain on the roof a week ago has caused devastating effects to my reactive tinnitus. Every day since it's been getting even worse.
    View previous comments…
    ErikaS
    @DeanD I am so sorry to hear this. I think you would be safe trying Gabapentin. I understand your hesitation with the other drug due to it being an antidepressant, so if I were you I would ask for a trial of Gabapentin, starting low and increasing.
    DeanD
    @ErikaS - thank you, I am considering gabapentin. My neurologist may prescribe but either Id have to say Ive taken the Nortriptyline or lie and say I did but didnt have an impact or take it first. I def feel its nerve and brain activity I need to calm.
    ErikaS
    @DeanD You could always say you just want to give the gabapetin a try before starting an AD med!
    DeanD
    Have been prescribed nortriptyline - but hesitent. Feel it was medication that triggered the chronic throat and chest spasms off 6 mnth ago
    just1morething
    I've always got extreme dry mouth after about 3 days on that stuff.
    RunningMan
    It was ineffective for depression & anxiety for me at 50 mg for two months, just had side effects like dry mouth, higher heart rate, occasional acid reflux type of pain, even occasional chest pains. So I slowly weaned off over months. It didn't seem to ever affect my tinnitus or insomnia.
    DeanD
    Does anyone else's T get quieter during and after they eat a meal? - the strangeness of this condition is never ending!
    View previous comments…
    Jupiterman
    Or maybe it's the enjoyment of the food taking the mind off the T?
    ErikaS
    I have had this too since the beginning. I also have thought it may be our brain focusing on the pleasure of eating, from taste to stomach getting food.
    DeanD
    @ErikaS - I have been doing a little research on this and found that chewing may stimulate nerves and muscles around the jaw which can activate potassium channels. Perhaps this action gives slight temporary fluctuations to the performance of potassium channels calming the neurons for a short while - until, annoyingly, balance is restored.
    All very theoretical but a possible pattern there
    DeanD
    Due a nasal endoscopy. I can't push through them - too painful. ENT wants to try 2mg diazepam prior - wondering if paracetamol be better?
    View previous comments…
    DeanD
    @hopefuldede - I'll be nervous but not ridiculously anxious for the procedure, so don't see a diazepam helping me much - whereas maybe a shot of whiskey and a paracetamol will take a bit more of an edge off (?)
    Just wish they'd knock me out and do it!
    H
    Shot of whiskey is a great idea. I have to have two glasses of wine before any flight - takes the edge off
    Pinhead
    I usually just have them put me under completely.
    DeanD
    First boys night out in a year. Lots of alcohol. 3 bars, a club then to hotel. It was fun, could say a lot of buts, but, I did enjoy overall
    View previous comments…
    DeanD
    Thanks @ErikaS :)
    @hopefuldede - surprisingly I woke up with no real hangover (no idea why but I'll take it!) - although I did wake up wondering where on earth I was! I'm not used to staying in hotels anymore lol
    Sammy0225
    @DeanD wow you've come such a long way bro! Impressive!! Did you use pro in the bar/club? I'm assuming you did lol nice man!
    DeanD
    @Sammy0225 - thanks mate! - Must admit a few months ago I didn't think there was a chance of that. Tbh a few days ago I didn't think I'd manage it but guess I kind of forced myself.
    Yes I wore my custom molded plugs. Did briefly take them off on the rooftop bar and it didn't really feel overly loud, but put them back in as a precaution. Was happy to say I did it but I did spike a bit after due to the reactivity.
    DeanD
    I've had fleeting tinnitus, but one happened just now, and it didn't fully go, leaving behind a high freq and intense tone! Anyone else? :(
    4Grace
    Usually goes away quickly for me but I have had more and more of them. A little longer in length too.
    Only once it lasted about and hour and it scared the hell out of me. I am sorry to hear and hope it goes away soon.
    DeanD
    I have no baseline. Daily variable tinnitus. Highly reactive. Sleep and meditation changes the tones and volume. It's tough and lonely.
    View previous comments…
    ErikaS
    My tinnitus sound that falls in my sudden hearing loss range is very somatic. All the other crazy crap (mid frequency tones, electric beeping, swirls, etc) doesn't seem to be. Currently sitting on my couch in quiet home and someone started an electric tool next door. Tinnitus immediately reacts by picking up speed, intensity, and intrusiveness.
    ErikaS
    That also happens when I get out of bed in the AM to let the dog out and go right back to my bed to lay down. Hardly any sound other than getting up, walking, opening and closing door quietly, then going and laying back down. It is truly unbelievable.
    4Grace
    @ErikaS The very odd time my T is soft in the am however noise or no noise after 10 to 15 minutes of being awake it goes back to loud. It must settle when I sleep.
    DeanD
    Is anyone aware of any before and after studies of the brain (via scan or EEG) for someone with reactive tinnitus?
    ErikaS
    Only have my EEG with reactive T, no EEG done before it :(
    DeanD
    @ErikaS - you do wonder sometimes whether two EEGs the same day, before and after noise, in someone with reactive tinnitus may show brain changes and where.
    Maybe it's been done, but I have researched like crazy and can't find anything published
    DeanD
    Does anyone know of a good 3rd party caption software I can use for Microsoft Teams on Windows?
    kingsfan
    Teams doesn't already have live captions? I swear I was using them 2 years ago at my last job
    DeanD
    @kingsfan - MS Teams has them, but they can only be switched on your side if the meeting organizer switches them on their side. Even switched on no one else sees them unless the user activates them.
    Why they are not on by default is just stupid.
    1:1 calls, the captions are default on, but meetings they are default off.
    DeanD
    @kingsfan I spoke to Microsoft Accessibility support about how embarrassing it is keep having to ask meeting organizers to switch them on just for me - they said 'sorry, it's just how it works'.
    Great job Microsoft Accessibility team!
    Desperate for 3rd party software that can display captions from any software or website used when audio is playing
    DeanD
    A build up of ear wax was the best protection against further hearing loss and damage in this loud world. Then I agreed to microsuction :(
    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.
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