ErikaS

ErikaS

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  • ErikaS
    Wanted to provide an update on my TTTS/MEM vibrations in my right ear. After pretty much nonstop for 12ish weeks, they just stopped about a week ago. The ONLY change? I took 2-3 doses of Ubrelvy (CGRP inhibitor) that the Neurologst wanted me to try to see if it would help with tinnitus and reactivity.
    ErikaS
    Six and a half weeks since my most severe bout of MEM/TTTS vibrations started in my right ear. It is so frustrating and mood crushing. Things that gave me relief or took it away in the past (chiropractor ear adjustments) don't seem to be working right now.
    View previous comments…
    ErikaS
    @MindOverMatter I then get upset and think "if I don't stop simple life things for a while, it will continue to be agitated and become permanent". But also staying at home and limiting more simple things life has me fixated on it and increases depression because I'm isolating.
    ErikaS
    @MindOverMatter what also makes it tricky is if I'm around other ambient sound, it's stops while the other sound is going on, so that gives me a nice mental break and boost. But after I stop talking, turn the car off, go into the quiet, go to bed, etc that's where it really comes out and shows me its agitated state. Waking up is rough too.
    MindOverMatter
    I do get where you come from @ErikaS - it is all familiar to me. You can't stop living, but you need to pace tmyour life and make time for proper rest. I would not stop doing things, but maybe limit things until you stabilize more. My process was non-linear. Setbacks, unless you do something "stupid", is an unavoidable part of this journey.
    sandyknight
    Hi Erika. I hope you're doing well. I saw that you mentioned your distortions came back. Did they go away a second time? I'm dealing with my own second round of distortions after beating the first.
    ErikaS
    Hi @sandyknight so sorry I am only responding now. When it comes to distortions, they come and go, but don't seem to stick around or bother me to the extent they used to. Something that I learned that really exacerbates my distortions was wearing in-ear protection, from foam to custom ear plugs. Talking with those in make everything worse for me, especially distortions.
    ErikaS
    @sandyknight Definitely give your ears rest in lower level sounds, they went away once and should fade again with some time.
    ErikaS
    A very stressful week + louder noise exposure to music over a 2 hour period has left me with bad TTTS vibration in right ear/head. It's the worst in silence, especially when going to bed & waking up. Temporarily cuts out when I talk or hear external sound. It's only been 7 days since onset, but I'm already frustrated & anxious about it. Praying it goes away.
    View previous comments…
    MindOverMatter
    Stress management, shifting focus, walks in nature if you can + magnesium glycinate and possibly bioflavonoids. It will pass, stay positive about that - but it might stick around for many months.
    ErikaS
    Thanks for the feedback as always @MindOverMatter .. To reframe it in my mind, I think of it like an eye twitch. I've gotten many of those over the years, haven't had one in a while but the worst being during stressful, run down times. Some cleared in a couple weeks, others a couple months. That helps my anxiety over it and to know it will fade, just like an annoying eye twitch.
    MindOverMatter
    Thats actually a good way of reframing it @ErikaS Don't give it to much space. One day at a time. You will get there 🙏
    ErikaS
    Haven't posted in a while but want to share this random and unfortunate effect of what I think is from licorice root extract. Started taking a supplement with this in it (dose is up to 350mg) with some other things to help treat gastritis. Ever since starting the supplement four days ago, tinnitus, reactivity, and inner ear vibrations have notably worsened…
    View previous comments…
    S
    I can't imagine it wouldn't just be temporary or else we'd probably have heard of it causing tinnitus before!

    Shame though... I've got a big bag of licorice I got at Christmas and now I can't risk eating it.
    MindOverMatter
    Sorry to hear this @ErikaS That being said, taking a supplement like this for just a few days, which in itself is harmless, won't leave you with a lasting spike. It might stick around for some times, at the worst, but I,m sure it will calm down again.
    ErikaS
    Thank you for the encouragement @MindOverMatter and @Scruffiey .. ears are still very exacerbated. They were somewhat heightened before this just due to life and a travel a little over a month ago, but notably spiked in all ways this week and it aligned with this supplement. Hoping it doesn't take too long to stabilize.
    ErikaS
    Hello! Little updates. Found out my thyroid went through a random hyper phase (I have Hoshimotos hypothyroid), so adjusting meds and hoping that helps T. Yes, thyroid issues can very much exacerbate or even cause T. Also, switched back to Ativan from Clonazepam. Clonazepam is a heavy hitter and gave me side affects like memory loss and bad depression that I do not experience on Ativan at all...
    ErikaS
    Clonazepam did not provide any better or more relief to my tinnitus or reactivity, so after 3 1/2 weeks of trying it, I switched back to Ativan with no issues. Still .5mg in AM and .5mg in PM.
    ErikaS
    Well I went from the post below to entering that time of the month and BOOM. Instant spike, increased reactivity, decreased mental and emotional tolerance, increased depression. As if this time isn't annoying enough 😣
    ErikaS
    Doing some better than 2-3 months ago from major spike in August. Last day of work is January 3rd, just trying to make it until then with so much paperwork and a large student caseload. Going to do my best to enjoy the holidays 🦃 🎄❤️
    View previous comments…
    ErikaS
    @Nick47 I'm so sorry, the variability is maddening and would drive the most mentally stable person crazy. Give your ears some time from those ear plugs, first time I did that it took like 6-7 months. This time seems quicker but my job is so stressful and kicking my butt, which kicks up my T.
    Cmspgran
    @Nick47 your description of your last 3 years is a carbon copy of my last 18 months, it's soul destroying. @ErikaS keep us posted on clonazepam progress, have you considered combining with low dose Gabapentin?
    N
    @Cmspgran it's as if someone is wired up to the national grid and screaming in my ears today. Then I put the radio on and they scream louder over the top of the music.
    N
    Hi @ErikaS have you got over your bout of illness yet. My reactivity is still BAD and VARIABLE. How has your condition been over the last week?
    ErikaS
    Hey @Nick47 sorry I had a very busy week at work and wasn't coming on much. Yes illness is gone and thankfully no significant setback from that. All in all, I'm managing okay and better than 4 weeks ago. I have moments where it's a lot and reactivity is still super sensitive, but it's not nearly as constant.
    ErikaS
    @Nick47 last weekend I went out to dinner with a friend Saturday night at a medium level noise restaurant and was there for 3ish hours, then Sunday was at my sisters for a small gathering for her husbands birthday. Monday and Tuesday were exacerbated, but rebounded to more tolorable levels. I TRULY believe this is mainly me healing from the ear plugs and the effect they had on my nerves.
    ErikaS
    @Nick47 also currently doing .25mg during day and .5mg at night just from illness and very hectic work week. I will also say the mindset of keeping myself occupied/distracted very much helps me. Distortions are much quieter and crazy sounds that came on in August have calmed down a lot.
    delta784
    Hi Erika what caused your distortions may i ask
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    N
    @erik I'm thinking the ear plugs are a no for me. Over ear ONLY.
    ErikaS
    I'm telling you @Nick47 , my most significant spikes/worsenings followed using them. I'm one of the last people on this forum to tell someone what to do, but if someone like me who has reactive T and not loudness or pain H, and I am too sensitive for in ear protection, I can't help but think about those with H wearing them constantly and if it's causing further nerve sensitivity/aggravation.
    N
    @ErikaS it makes you wonder. Clinical staff don't know. Research says loudness hyperacusis is made worse though. Have you recovered from cold? Medicine change better?
    K
    Hi Erika - nice to meet you! Wondering if I could ask you some questions about your lumomed experience? I just finished 20 sessions myself and like you, it really spiked the worst / reactive tone I have and hasn't gone back down. Wanted to see if that ended up levelling out for you (and how long it took). Thanks!
    View previous comments…
    ErikaS
    @k9 the exacerbation from the LumoMed specifically was short lived but it is so hard to say exactly because I had/have very reactive tinnitus and driving, traveling, etc all effected that.
    K
    Thanks @ErikaS and sorry for my slow reply. It had died down from the insane levels using the laser but since doing the therapy, I've got more sounds in my head and some more sensitivity in my ears, though in fairness, the reactive component has relaxed some. So at least there's that.
    K
    I'm told you need to let the nerves heal 3-4 months before saying yay or nay on improvement and it's only been a month since starting, so will see. hope you're doing ok, and now that you're home and can let your ears rest more I hope you see some much-deserved improvement.
    ErikaS
    Turning in my letter this week. Honestly feeling very relieved and good about leaving this job. I could go into details but it is truly for the best for many reasons.
    ZFire
    Sounds like a huge weight off your shoulders. Totally understand. Glad you're feeling good about the decision. I'm sure you'll find something more suitable to your liking (some type of remote work). You're talented enough :).
    ErikaS
    hey @ZFire so sorry for my very late response! Thank you for your comments and compliment I vey much appreciate it. Mast day is January 3rd, so much paperwork and craziness with the holidays approaching but almost there! Mixed emotions of course, but it is the right decision and move for me at this time.
    ErikaS
    Meeting with my union rep this week, typed up my letter of resignation. Wish I didn't have to do this, but I know I have to for my condition and future. Only thing is in PA, school districts can hold you for 60 calendar days post resignation letter :(
    View previous comments…
    ErikaS
    @Nick47 never pain hyperacusis (knock on ALL wood), and the ONLY time I experienced true loudness hyperacusis was before I had the SSHL and developed tinnitus…
    ErikaS
    @Nick47 ENT used microsuction for a total of like 3-5 seconds in each ear to remove an ear drop oil that adhered to my ear drums and created like a membrane on the ear drums. For the next 24 hours I experienced mild to moderate loudness hyperacusis but I honestly think it's because my eardrums were normalizing after having that stuff block them for over a month
    ErikaS
    @Nick47 it was a week or two after that when I developed raging ear infection in R ear that lead to SSNHL and reactive T. If she would have given me a steroid and/or antibiotic when I called her and asked for them shortly after the hyperacusis calmed and R ear started to feel full, probably would never even have been here.
    ErikaS
    Delaying the Trileptal to try the Nurtec samples my ENT gave me. Took one tonight and will take another tomorrow night or Sunday AM as long as pill one doesn't spike me.
    ErikaS
    Apt with psych today. Decided to give Trileptal another try due to only taking it a short time before and only at 150mg. Starting at 300mg a day…
    View previous comments…
    ErikaS
    @grate_biff so I am doing some research now and may delay the Trileptal to give the Nurtec a try this weekend.

    @Nick47 what are your thoughts on this? Do you think it's worth giving Nurtec a try?
    Zigs
    N
    Hi @ErikaS only just realised how to apply to these messages after the new format. Nurtec is a CGRP antagonist from research. It may help and is recommended for migraines. Sorry to read about your job. I had to hand work back after getting worse T&H
    Zigs
    Hey, please could you tell me how you coped with morse code? I've developed this out of nowhere yesterday and it is unbelievably loud and intrusive. It's there all the time. Prior to this I had been feeling better. I feel like a long car ride maybe caused it (I hadn't left the house in months prior to this)
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    ErikaS
    @Zigs those with facial pain and/or Hyperacusis as well as TTTS, and typewriter/morse code have had varying benefits. Wanted to mention that to you.
    Zigs
    Funnily enough a neurosurgeon suggested carbamazepine to me this week
    ErikaS
    @Zigs I would try it! Trileptal is basically the same just less side affect profile and I was told I don't have to get blood draws to check sodium levels or something. So you could start with the oxcarbazepine and If no relief, try the carbamazepine and go from there?
    Zigs
    Hey, just to say I would quit your job. Your health is more important. I made myself worse pushing myself to go to work. You can always get another one
    View previous comments…
    ErikaS
    @MindOverMatter Once again, I agree :) .. Even though I am not happy in my current role and need something that is less stressful and more conducive to not only my current state with my condition, but allow me to more likely reach my dreams and goals in the next 5 years, working is one of very few things that gives me purpose and a sense of normalcy..
    ErikaS
    @MindOverMatter I do not do well not working at all, as it is said "an idle mind is the devil's workshop".. well my biggest "devil" is my T and an idle mind gives it too much power! So like you said, all about balance.
    Zigs
    Where to start with my symptoms! They change daily and the most debilitating come and go. Last week it was severe pain, this week it's this morse code banging
    ErikaS
    As if the spike wasn't challenging enough, here comes the first sickness from going back to work in a school ;( Sending T even more haywire.
    Supersix
    Are you still taking Trileptal?
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    N
    And you've tried Gabapentin, oxcarbazepine and keppra with no success . I have seen quite a few people have success with Lamotrigine. By now Neuromed should have experience with sound reactive tinnitus and what anticonvulsants work best in this group. They are a better choice than benzos. I would ask specifically the questions on anticonvulsants and nerve stabilisation. Pin them down! @ErikaS
    ErikaS
    @Nick47 I am limiting phone and TV audio right now during my spike. When I wasn't in a spike, I could easily tolerate these low volume level in moderation. I use a laptop but again, no sound unless I absolutely have to listen to something for a short time.
    ErikaS
    @Nick47 I did Gabapentin short duration at lower dose and stopped because it was giving me longer fleeting tinnitus, it was so weird. Tried Trileptal for 2-3 weeks maybe? Thought some improvement in first week then nothing. And Keppra was short as well because I started to spike.
    ErikaS
    *Thoughts/Advice Appreciated* I have a consult with a Physiatrist next Thursday who does an array of pain management things in his clinic..
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    ErikaS
    Honestly not many people have even tried occipital nerve blocks for tinnitus, but I did read more so in migraine threads on Reddit that some were shocked how the occipital nerve block significantly lowered or took away their T for 4-6 months.
    ErikaS
    If you were me, would you discuss this option with the doctor? I am mainly considering this given my very sensitive reactivity and even the sensitivity of the nerves in my ear canals, and Dr. Hamids work showing via brain scans that those with fluctuating, sound sensitive tinnitus like mine look very similar if not the same to scans of those with migraines.
    N
    @ErikaS I remember Hamid mentioning the Trigeminal nerve a few times. It's worth a go, although which nerve I'm not sure. If I was pushed I would say trigeminal but I'm far far far from certain. I do think Gabapentin helps me at doses of 300mg, as sometimes the 1st part of the next day I'm less sensitive.
    ErikaS
    Scared that my only option to stopping the current spike I have & seeing improvement would be leaving my job for good. Very upset right now.
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    ErikaS
    We may @ECP but it's just not that easy especially in the beginning of the school year and I already had a year and a half off. I wouldn't feel right doing that knowing I cannot guarantee any type of permanent improvement to come back again.
    ErikaS
    Not sure if anyone else has experienced this during a spike, but some subtle beeps I had that weren't too bothersome or even noticeable have now significantly picked up in speed and intensity level so much and are some of the most distressing sounds. It's so weird and annoying ;(
    N
    Hi @ErikaS I spiked after a night out for my 50th 10 days ago. 3 hours in town across 3 bars. Used ear plugs and had breaks. How can we live normally? Its beyond me. Did you visit any bars, clubs or festivals with music over the summer?
    ErikaS
    So afraid this isn't just a spike but a permanent worsening :( and I can't just stay at home every day in quiet, I have to go to work.
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    MindOverMatter
    Ive had those same thoughts many, many times @ErikaS What I've learnt after my worsening/trauma in 2019 is that thinking the worst will only make the spike last longer. Telling the brain that this might stick around. There is a bigger chance that it will pass. Temporary shifts, or spikes, is an unavoidable component of this journey.
    ErikaS
    Thank you @BrOKeN_1 , sending you strength as well. I am now kicking myself for not sitting in the quiet all of August to try to heal up as best as I could before returning to work, it's just so hard when I struggle mentally in the aloneness and quiet.
    ErikaS
    I so appreciate you @MindOverMatter .. I was doing better at end of last week, but some high emotional stress over the weekend and then two nosier and stressful days at work has set me back again. I stayed home from work today because of how intense and overwhelming it was this AM.
    Yellowblue44
    @EriskaS you say you had custom ear plugs done. Did they help. Where in the uk did you do it? Thanks
    ErikaS
    Hi, I am in the USA Not UK, so sorry I cannot help with that! Still waiting for the musician custom plugs to come in again, the one was a little too big for my ear so had to send back to remake.
    ErikaS
    I have read many stories on here that have said custom ear plugs really helped with protection when needed, especially on the journey to improvement/stabilization. I just hope they don't go in too deep for me and the occlusion isn't too bad with the nerves in my ear canals being so sensitive/heightened
    ErikaS
    Distortions I hadn't heard in many months that took quite a while to drift away are back. I swear this is because I wore the deep ear plugs!
    View previous comments…
    ErikaS
    Currently in biggest set back since stabilizing in December. The good news is there's really no new T noises, just my usual 4ish noises have gotten more electric and unpleasant in how they sound, if that makes sense, and the volume and energy of the T are notably higher. Also, increased reactivity, lower endurance, and distortions are very much back. ;(
    S
    @ErikaS sorry just saw ur comments. Mine started nearly two months ago with a mild one on left ear , right joined in 2/3 days later . Slowly the volume started getting louder and new tones gets added every couple of days . I now have 4/ 5 in each ear loudly blaring. I get pain too so it's been a downhill so fast .
    S
    Certain sounds spikes it irrespective of volume,any chores that increases my heart rate,increases the volume of T too. Its been exhausting and the anxiety and panic that comes with it is out of this world .
    Zigs
    Hope you're doing okay :)
    ErikaS
    Wish I was better! One spike after another this summer has me in a pretty yucky spot, but I am hoping with time, more quiet, and patience it will subside! How are you? I think I remember reading recently that things aren't good :(
    Zigs
    Aw I'm so sorry. We have to try and hang in there! This past week had been okay for me mentally after quitting alcohol and doing lots of work on curable and OTO
    Zigs
    But something has really aggravated my "good" ear today and it has been so sore and noisy all day. This condition has got me googling whether almonds can cause a spike!! What on earth haha
    ErikaS
    When a spike brings back a really annoying tone/noise you haven't heard in a while ;( Praying it goes away again sooner rather than later.
    ErikaS
    Anytime I use deep ear plugs, it causes inner ear vibrations day or 2 later. My nerves in my ear canals are SO sensitive, especially R ear.
    View previous comments…
    ErikaS
    @snizzleberry I experienced first stabilization (not continuing to get worse or constant temporary spikes) around a year and 3 months. Then got Covid this past Jan and spiked from that but returned to baseline. I returned to work March 1st full time (school speech therapist), spikes here and there, but short and temporary…
    ErikaS
    @snizzleberry at end of school year, I attended some louder events and went into summer break with worst spike in a long time. Been more spiked than not this entire summer. I was honestly better off before summer. I struggle with sitting and staying in the quiet, easier to do in winter months. I go back to work next week. Will see how it goes.
    ECP
    Sorry to hear that. May I ask how you define "deep" earplugs? Like, can you tell us what brand and model you consider to be too deep, or can you tell us how many inches or cm you consider too deep? I've only worn foam earplugs, and I'm beginning to shop around for musician's earplugs as an alternative to wear in low-noise environments where I might have to talk to people.
    ErikaS
    Got back from short travel this past Thursday, foam plugs w/ pelators on planes. Still spiked. I seem to enter spike 4-5 days post event.
    ErikaS
    Just got molds done today for custom earplugs. Looking forward to having custom plugs.
    Zigs
    Hope you are feeling better!
    ErikaS
    Sorry just seeing this now @Zigs !! Thank you so much. I felt notably better on Friday, so what did I do? Over did it with sound this weekend. Left the house for a few mild to moderate sound activities, nothing crazy at all, but too much too soon. So, spiked again! Trying my best. How are you feeling?
    ErikaS
    Really enjoy reading summaries & discussions on Dr. S webinar. I truly feel hopeful & so appreciative of her commitment to this condition.
    ErikaS
    Curious how many days after a louder noise exposure do people seem to then get a temp spike, and then how many days until said spike calms?…
    View previous comments…
    ErikaS
    I hear you @ECP , I'm just happy for you that you returned to baseline. I'm around day 12, and still spiked away. Even though it screws with me mentally, I have to become more conservative and consistent about staying in quiet with only necessary noise. My issue is I have a day or two in a row where I feel some improvement, and I push myself more. Doesn't bode well.
    ECP
    I can empathize. Sending some good thoughts and healing vibes your way.
    N
    @ErikaS I noticed 48 hours after. Everything started to sound loud again, I got TTTS back listening to podcasts and music through phone speaker, then the tinnitus went wild to cars passing, wind, fans, frying pan, sound generator etc.
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