ErikaS

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.

Was thinking about asking how you were getting on in regards to this setback just the other day. I feel like has stabilised a little better as of now. Around the same time frame as yours

@Hardwell thanks for thinking of me! And I’m glad yours seems to be stabilizing. It’s so hard to keep rationality and logic at the forefront when we are dealing with this/these conditions because it affects our mental and emotional state so much. But the reality is the auditory system, from ear to brain, needs TIME to calm down, decrease inflammation, etc..

@Hardwell also, I’ve been forced to focus most of my attention recently on a family matter, and this truly has helped my brain not put the condition at the forefront and hyper focus on it and stew in emotions about it. My brain is learning “other things are more important” and it seems to be paying off.

Saw you posted today.

Welcome back!

@Jupiterman sorry just seeing this now. I am spending a lot less time signing in. As I do limbic system retraining, it is important like Sammy noted to stay off sites as much as possible. At this point I’m just interested in/waiting for FDA approval for the device. Other than that, have to do what I can on my own to improve!

You've signed in and posted three times in the past 10 days. You've got something to give back with your experience now. It's great your still 'checking in' every few days.

=(

This is great to hear! @ErikaS

Wow thats cool, they're in Santa Barbara, if I ever went I'd have to do at least 3 days to make it Worth it since I'm in Hollywood, how many sessions so far? It's expensive but worth it?

@in_LA I see someone local in my area who uses their neuromodulation devices and consults with them. So I can’t comment on Santa Barbara pricing and outcome, but you’d need more than 3 days.

Do you think it's related to the neuro modulation sessions you had?

@eagerUser No, I would hear this sound off and on very minimally over the past few months, its just now become more constant and audible. I think my recent bouts of anxiety and depression haven't helped.

All of the above for sure.

I feel like I’m onto an effective combo

100mg Carb (calm morse code)
4000mg Lions Mane (t, headache)
2000mg Ashwa (for anxiety)

I’ll give it another month but so far so good.

No I didn't take the 2mg of diazepam as I was not stressed by a low hiss

@Nick47 man, so your GP won’t give you a script for the Gabapentin ?! That would be insane if he/she didn’t

To only have a hiss. That’s how my T started out 10 months ago. Now I have electric reactive hiss along with 4-5 other lower level noises that are mores code and like random car beeping that get faster with noise exposure and overwhelming in quiet, it’s beyond chaotic. I didn’t have any hearing loss in the levels of the chaotic/morse code shot sounds so idk why the hell I am plagued with them.

@Ryan Scott the reactive/sound sensitive aspect of my tinnitus is what is keeping me debilitated. It has not budged since onset no matter what I did, and only worsened some after Mexico (my biggest regret yet). So I will do what I can to try to rewire this aspect to help my brain progress and heal.

Don't be hard on yourself for whatever happened in Mexico. We do stuff and regret but if you think about it you probably didn't know it would do something.

@ErikaS I know exactly what you mean, I wanted wings Friday so I had to wait for my to go order inside for like 5 minutes and regretted it. But its like we aren't trying to do anything wrong just live life, tinnitus is just so dang hard.

I hope it helps!

Wishing you the very best of luck!

I think it could help in some instances, and my current practitioner does it as well but he said based on my qEEG it’s definitely not the place to “start”, as I need a stronger intervention but doesn’t mean we will never use it. I would just say wherever you’d go make sure they have worked with a case or more that is similar to you.

@ErikaS Oh I see, I am super excited about your new treatment. I hope everything goes perfect for you. Yes, I know someone who is very knowledgeable in this field but he is not in my area.

Thank you so much @eagerUser , trying to remain neutral but I am praying with all of me that I can stabilize the reactivity and calm down my ultra high frequency oscillating tone.

Gosh you’re brave trying these things… I know you have to I understand completely. I’m over here too worried to try certain supplements. Gosh I do wish we could even get a week off every month xx best of luck mi dear

Thanks @hopefuldede !! I am almost 10 months in, and although my tinnitus is mutli sound and annoying, my debilitating factor is extreme reactivity / T winds up automatically to constant sound stimuli, thus awful to deal with going about life and always scared of a worsening. I was very fortunate to find this option locally and the cost is not bad at all.

I hope you will have great success and will post your own success story. It all sounds very promising!

@ErikaS It so hard to believe that even sounds produced my nature like rain and thunder can be hurtful to people with tinnitus, but yet they can be. It is honestly such a mind blowing condition.

@Guywithapug my reactive/wind up tinnitus is pretty consistently sensitive. It hasn’t improved really or gone down since onset 9-10 months ago. My tinnitus is low level loudness at baseline most days, but obviously sound makes it more intrusive and hectic. I don’t really have “good days” since setback in April.

@Ryan Scott all due to a very over-sensitized / hyperactive brain and neural activity. I am one to think we can calm this down and reverse it, just have to figure out how, which is why I am trying my new treatment on Monday.

I need an update on this. I’m invested in the story.. pls let us know if they knew haha :)

@twa yes. I did an EEG last week and now doing some further things today before starting neuromodulation intervention, mainly different electric current stimulations

So she did not know who Dr. Shore was (not shocked) but was very interested and took the information down to look up her latest study. This woman is more sensory motor based, but had some good input moving forward and things I can do at home to integrate while receiving the neuromodulation with electric current stimulation and other things.

I used to love a glass of dry red but it triggers my hyperacusis like crazy. Disgustingly sweet ice wine, on the other hand, is fine, so I have a glass of that when it's in season and bank account agrees :)

Nuits Saint Georges.
Vive la Bourgogne

Tonic …. couldn’t resist :P!

Same here. Just got back from the hospital had the doctor cut and drain an abscess that just decided to form in the last few months, hurt like heck. Tinnitus still way worse than that was though.

And then on top of my new doctor bill the AC unit decided to break last night. On the brightside I guess, tinnitus is still my only concern. Crazy how you don't stress about money or anything else when you have T.

@Ryan Scott oh gosh Ryan sorry to hear ! I hope you had someone help you. And yes, any temporary pain, no matter the severity, is better than this.

Currently we are having the worse rain storm with thunder and lightning where I live. Driving me absolutely crazy.

@Ryan Scott Ugh, hugs to you friend! That's when you know your tinnitus is reactive or not - rain on the roof sound. Try to go to a bathroom where it is quieter.

Ugh, I feel you! It's the bar across the street & their live music that's bugging me most! And anytime there's any maintenance in nearby apartments. Really worried about the major construction that's going to be taking place across the street in the near future too :(

I’m a lil bit late but hey ho. Happy birthday!

Happy belated :)

Happy belated birthday!!! Omg I’m sorry I’ve been absent here! But I hope your birthday was amazing @ErikaS you deserve it <3

I am trying some other intervention avenues first, but have a plan to try anti-seizure Tegretol at low dose if all else fails. Not only is this used off label for anxiety, depression, PTSD, but can help Morse code type tinnitus which is what at least 2 of my tones present as. It is also used for facial nerve pain, which I do not have but thought I’d share that with you.

@ErikaS Yes, it's really unfortunate how for many (if not most) of us, what used to be simple decisions around meds now carry so much weight.

Thanks for sharing re: Tegretol. I don't have nerve pain I can't handle at this point (& I don't think the med would actually help the nerve?), but your suggestion might just come in handy in the future.

I read that you're interested in a stimulation-type treatment... how's that been going?

P.S. I used to have Morse code type tinnitus (or at least I think I did), but I think it eventually just developed into a tone over time. Perhaps that might happen with yours too?

@Nick47 I had asked you a question but then deleted that status and wrote this one. I basically asked if you deal with sounds as I describe them above, and is it technically a form of typewriter T. My MRI and CT were clear so I don’t think compression, but man are these sounds chaotic.

I get the Morse code beeps sometimes

@Nick47 got ya. Now that I’ve realized this, I think Carbamazepine may be next on my list and I can get my psychiatrist to prescribe that, if he agrees to it due to its off label for bi polar.