DeanD

@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” ..

It is called Carolina Functional Neurology Center. Website is https://carolinafnc.com/

@ErikaS - thank you so much, it is very much appreciated. I am going to look in to them!

I hadn't, but I have now.

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.

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.

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?

@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

@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 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?

@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.

@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?

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

@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.

@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?

Wondering this too, @DeanD , thinking of you often.

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?

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.

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.

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!

@ErikaS - many thanks, and English is the only language I know lol, so all good

@Hardwell - have you been for rTMS?

Sorry @DeanD I’ve only just seen this, No I wouldn’t entertain the idea. It’s ordinarily 10 sessions+ And just as loud if not louder then an MRI

@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).

@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!)

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.

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.

@Strawberryblonde - it sure does help taking a break from here at times!! Keep pushing forward!
And thanks :)

@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!!

@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.

@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

Thanks @ErikaS

@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 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).

@sakrt - yes I had the upper GI endoscopy 5 weeks ago along with biopsy and showed nothing. The barium swallow results showed nothing either.

@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 Are these the custom plugs that gave you the spike? What kind are they?

@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.

@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!)

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

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.

From my own personal experience using pro in the car spikes the shit out of my Tinnitus. The occu effect gets me every time

Thanks @Sironketchup

@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!

@Sammy0225 that CC captions for cell phone seems like a good idea. Do you have the name of the App?

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!

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 !

@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!

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.

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

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

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 :)

Prednisone is like playing Russian roulette with tinnitus. I lost when I took it. Don’t be to quick to make a decision

@Marshall - Im sorry you got worse on it, and I appreciate the heads up

@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.

@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.

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.

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?

@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

It was later than day I noticed tinnitus had ramped up, and the ear crackling much more severe.

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

I got a spike from my custom earplugs fitting but it went down back to baseline after a week or two.

@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.

Im doing ok just got a bit of ear canal pain from an ear plug pushed in too far i think. Could also be neuralgia too as its on one side of my head and extremely painful when it flares up.

@Strawberryblonde - aww Im really sorry to hear that, I hope that settles down for you too!

Thanks @DeanD :-)

Oh wow @DeanD !! first off I am SO happy physical symptoms have subsided. Thank God! And you were going back to work?? What an improvement.. I am so so sorry to hear about the darn spike! When is the last time you had a spike ? Did it decrease at all from a previous spike before this one?

@ErikaS - yes lol, Im not really sure what happened. I split with my gf and moved back in with parents. It's noisier, and I have to wear plugs most of the day, but maybe being exposed to more noise helped. T was still there, loud but softer, certainly more liveable.
I guess the last spike was a few weeks ago.
I can only imagine my other spikes decreased a little, its sometimes difficult to tell.

@DeanD the same thing happened to me I was kinda forced into a noisy environment and the spikes started subsiding. You can get back to this again.

DeanD has your tinnitus spike subsided? I'm taking Melatonin and it does seem to calm my tinnitus. Besides Melatonin, are you taking any medication like benzos, antihistamines, etc?

@ErnieMassri - not really I don't think. I only took the one tablet. That, or something else, gave me acid reflux which burnt my mouth, throat and voicebox and ended up in hospital. Pretty brutal :(. Nope, I'm not taking any medications at the moment. Trying to stay med free

For me melatonin helps tremendously. It does nothing for my tinnitus, but I can’t sleep without it. I hope you are ok now!

So sorry to hear of your suffering. Definitely get some melatonin it seems to benefit some on here and is more natural than prescription meds.

What do you think caused it to increase ten times in one week?

@Jupiterman - either the Zopiclone, or the last acoustic accident 3 weeks ago still playing a part or has lowered tolerance to really low db levels

I'm already in ear plugs 24/7. I live in a quiet house with no road traffic and hardly any outside noise.
I am worried the Zopiclone is causing the worsening. Have tried not taking it, but ended up awake 4 nights in a row.
Diazapam is being recommended for a week but I am reluctant.
I am hoping to try Melatonin today.
Want to be off all meds but insomnia is making it impossible

Diazepam low dose 2mg/5mg may help you get through this transition period and allow you some sleep. You gotta do what you gotta do to get some sleep. Ive taken them sparingly with T and did not notice a change. Do what you think is best regarding your current situation.

Thanks @Strawberryblonde - although I feel medication has got a lot to do with my current issues, I havent completely ruled out short term Diazepam.
Neurologist secretary had 'PC issues' so not getting the melatonin until tomorrow now.
If that doesn't work, I may have to try the Diazepam

Glad I'm not the only one living in silence listening to this shit storm

immensely difficult, but not impossible.