ErikaS

Update: it’s coming from my R ear. One of my T sounds in that ear morphed into leaf blower sound. Why, God?

i am so sorry @ErikaS a new noise to contend with can really throw you. I sometimes get certain noises i've heard re playing in my head or ears (not sure which one is doing the playing) after hearing certain sounds, had it from an alarm a few times etc i think the mind imprints that noise and sees it as a threat and replays it like a warning sound or something like that. My theory anyway. I

❤️

@Sammy0225 have you seen the thread from @Coffeebean ? i think thats his username? He used pink noise at a specific frequency to help him

@ErikaS the same here. Even though my T is louder than its original level, if the diplacusis/distortions/reactivity lessened or went away then i would feel 10x better than it constantly pulling the rug from underneath me.

@Strawberryblonde hello love (:
Yes I read much of @Coffeebean post. I wish he was still around to give us an update. And I agree if we can eliminate reactivity quality of life would be 80% better

Just looked it up. Sounds super interesting!

@Juliane I have a Zoom conference call with one of their top Neurologists on Tuesday. Will share what they have to say.

Oh wow! Please do

SSHL in my right ear but in high frequencies, so not a true candidate at all for CI based on HL. But its been 13 months of awful reactivity and multi-sound tinnitus and ground zero is the loss in my right ear, so on my bad days I really just want to remove my right ear.

OK that all makes sense. I've seen cases on here that improve in 2 or 3 years. So maybe you are not far off. But yes totally understandable you would opt for a cochlear implant if you could!

I would think twice to jumping to invasive CI @ErikaS. i am so disaabled due to it, when one time was in exact same position, desperate as you... and it's not "elective" easy-peasy procedure either! it's known to further damage cochlea in different ways. I understand your desperation. Have you had indepth hormonal bloodwork done?

@Justwaitinchilin Not yet, I am giving MyTomorrows a shot to be part of the "team" as we submit, but MT still has to contact my doctor's office. It's annoying honestly, but I am going to see if having them involved pushes anything further along. Probably not, but might as well try.

MyTomorrows told me they couldn’t advocate for an expanded access program that wasn’t already established.

Long, hot bath with lavender and epsom salt is the only thing that calms me besides Xanax.

I really need to get back into my epsom salt baths, @SarahMLFlemmer thanks for the reminder. Just filling the tub is aggravating to T, of course.

<3 I am so sorry I am only responding now. I don't know how I have any strength left, but I am still here. Praying for continued strength for all of us.

@ErikaS - no worries. Everyone here suffers so much but are so kind. I really do love you guys. I hear you on the strength. Last bar and flashing. :( I still keep a bit of hope.

Great news!

It definitely is Sam. I’m glad you got through the spike like you I also have a little one depending on me. Gotta stay strong for them <3 @SamRosemary

@SamRosemary @Sammy0225 I REALLY want to know the auditory system/inner ear damage/potassium ion channel function difference between those like us who hear an orchestra from hell of various kinds of sounds, and then those who just have one sound. When I wake up in the morning, its like roll call of all the sounds and its insane to me how this exists and I'm 13 months in.

@ErikaS It's the same for me, fellow Pittsburgher. My sounds each 'clock in' every morning, one by one. I get a solid 10 seconds of normalcy before that happens, during which time I envision my true self being cocooned by dark, black thorns...and then my day begins.

@dan From what I understand Doxy is more effective that Amoxicillin, but if someone absolutely cannot take Doxy, then Amoxicillin is used. But it also depends on the infection. Lyme is the main but there are many co-infections like Babesia that cause their own illnesses and symptoms.

@dan if I were you I would get comprehensive blood testing done to determine Lyme and co-infections then work with a Lyme literate doctor. Thankfully my functional medicine doctor who acts as my endocrinologist and PCP is very Lyme literate

I read stories in success stories about how many did not see/hear improvement with their tinnitus until 18 months or more. I Try to hold onto that, I just get scared when it feels like I worsen little by little. But I also have a lot of stressful situations going on in my life which I know do not help.

Yes @ErikaS , stress is a huge contributor to these issues. Talking out of own experience. I've had long spells with this. Getting out in nature (if possible), calming down in general, keep a clean diet and such, and maybe supplement with magnesium glycinate 200-500 mg a day, helps a lot.

@ErikaS interesting... I have been on remeron as well on and off since onset. I don't recall having this initially... I couldn't tell you if it's the middle ear but it does have a faint sensation to it.

@ErikaS i had exactly this!! Took months to go away. Yes it had more of a physical feeling of vibration more than a noise or sound.It slowly faded after my trip to the beach house last year. Looking back now I feel it was a form of MEM or TTTS. It activated to low bass sounds. (Cars passing outside and such) I’ll add that after a car ride it vibrated like crazy

I hope they hurry

Does anyone know when these are supposed to be coming out?

@stacey no one knows for sure but I would think access to at least one of these avenues will happen in the next 2-3 years

Hi @DebInAustralia so sorry I am only responding now! I typed a response a few days ago but guess I never hit post :)
Thank you for your sweet post. I have read about Sam's success with that and was so happy for her! I was actually on LDN for quite some during fertility treatments way before reactive T came and ruined my life...

I did try it a couple times early on in the reactive T journey, but a day or two after I started it, it sped up the sounds of my T and sounded like it was making things more hyper if that makes sense. So after a couple days of that I stopped. My origin of T was ultra high frequency SSHL from ear infection in R ear that was not treated with heavy dose steroids, so definitely nerve/cochlea damage. :(

I'm sure she is stuck in the waiting game like the rest of us.

Hang in there, sister. ❤️

@BrOKeN_1 I was on the Flexeril back in April for a little over a week, then the Keppra for 5 days.

@Strawberryblonde if you go to the Levetiracetam (Keppra) thread you’ll read my more in depth update and what I experienced there.

I know it may sound like I didn’t give the Keppra a good trial run, but I was only on 250mg 2x a day (very low dose) and it quickly was doing the opposite and more of what it positively did for others. Increased my worst tinnitus sound, increased my sound sensitive tinnitus/reactivity, and decreased my sound tolerance threshold while creating physical over stimulated sensation in ears.

Will be posting updates on the Keppra thread.

How is your reactivity lately?? Mine has come back for unknown reasons. Oscillating morse code beep and its shtopping me from getting a full sleep. :(

@Strawberryblonde my noise sensitive tinnitus/reactivity has been, since day 1, my debilitating factor. It’s never good. If my tinnitus did not immediately spike or react to sound, I would consider myself functioning and probably not be on this site much. That’s how my reactivity is lately/all the time lol

Do surely hope keppra has some positive effects for you :) no one should suffer this on a daily basis @ErikaS

hi Erica I saw you've tried tdcs has it helped? thank you

@Mattstarr251 unfortunately it aggravated my reactivity too much I had to stop

Trileptal is the “newer” version with less harsh side affects and does not show risk with fertility and pregnancy that Tegretol does.

@ErikaS - that's great to hear - is it helping with the reactivity too?

@DeanD no reactivity is still my main debilitation. That’s what I am looking forward to on Sept 15th with good Neuro, hoping to get a prescription with Keppra. I pray every day it works for me like it did for a handful of people.

@DeanD how have you been doing? I think about you often. Has the breathing and swallowing improved at all?

@ErikaS - I hope they both work out for you! Not much, ups and downs. Eating a little better but constant spasms still. Second neurologist has mentioned Globus but I think its a little more than that. He feels all these spasms were brought on by the microsuction - and 8th cranial nerve affecting the 9th.

@ErikaS - Had CT Scan of ears, and blood test, and back to see him in Sept where he will talk medication - but only for the throat. He himself has tinnitus, and needs a white noise machine at night, but feels no medication will help.
I'll be flying to the US at this rate for someone to listen!

@SarahMLFlemmer if you search “Keppra” and read threads on it here, you’ll see what it is and how it has benefitted some with reactivity.

@ErikaS what's interesting is when I was in the hearing test booth my T was extremely low! I wanted to live in there. Also I am in PA as well!

@Tryn2BHopeful reactivity is the sole thing that keeps me debilitated. I don’t even know what my constant baseline T would sound like with reactivity/instant changing or spiking to sound removed because kind of what you said, reactivity is the identity of my tinnitus.

Just had a thought for you Erika as I was doing my own research - have you ever considered trying Ambroxol? It's a sodium channel blocker among other things, just like Carbamazepine which is used to treat epilepsy.

I am interested in Keppra because it’s affect on potassium channel. And again I am looking for something that has directly improved reactivity for some because if I can calm reactivity, I am able to function. So with the anecdotal evidence with Keppra I want to start there.

Wishing you the best of luck! Keep us updated :)

I honestly have not researched it in depth myself. The practitioner I am seeing is trained and very well versed in the use of laser. She has been using an array of settings based on frequencies around the ears, over parts of brainstem, pointed in the ears, and over areas of brain. All shorter times due to my sensitivity with reactivity.

Thank you, right back at you.

Thank you! Unfortunately, I had to stop the electric stim treatment. With having to drive there 3x a week and then the treatment itself seemed to exacerbate more than help. So I stopped that for now and have just kept things low key. I am working with a functional neurologist who is located in Michigan, I will be visiting her the week of the 6th.