ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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
    View previous comments…
    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!
    ErikaS
    Hey @K89 I could only do about 2-3 sessions at half power because it was spiking me. I was very bummed because I believe in the benefits such as mitochondrial repair with red light therapy, but with my reactive tinnitus and very sensitive nerves, it was just too much for me at the time.
    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.
    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
    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)
    View previous comments…
    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?
    View previous comments…
    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..
    View previous comments…
    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.
    View previous comments…
    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.
    View previous comments…
    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.
    ErikaS
    Doing well. Working in a school, grocery shopping, watching TV, can go out to eat. Looking forward to much better summer off than last year.
    View previous comments…
    ErikaS
    Sprry I did not answer back until now @kingsfan .. I have multi-sound, sound reactive tinnitus. It still reacts to noises, especially fans, TV, music, rain, etc. This has gotten minimally better over the past 8-9 months, but when I am in a spike still very sensitive. When I m in a spike, I also have increased overall sound sensitivity.
    Zigs
    What do you think contributed to improvement?
    Yellowblue44
    Hi @ErikaS sorry to learn you have spiked. When you were stable for a few months. What helped you then . Was it DNSR?
    ErikaS
    Something went awry tonight. I am trying to stay calm but very hard to. Took small dose of methylprednisolone last 3 days for virus…
    View previous comments…
    Sammy0225
    Hi @ErikaS! Just wanted to chime in. I've experienced that low hum also and also it was reactive. I didn't hear much outside but inside it definitely acted up. I never figured out what it was but it eventually went away after a few weeks/months
    kingsfan
    @ErikaS When did you take your last dose? It doesn't usually happen with such a short course, but it can throw off your cortisol levels for a little while. Maybe that can further cause changes until your body recovers? Just speculation.
    ErikaS
    @kingsfan I only took it for three days. 4mg in AM and 4mg in PM. An hour after PM dose on day 3 (Friday evening) is when it happened so I just stopped taking it since it was such a low dose and only 3 days. However the past two days I have been dragging and SO tired, like a burn out tired feeling. I can't imagine that is withdrawl from such a small dose and 3 days?
    Zigs
    Hey @ErikaS hope you are doing okay. I just wondered if your morse code beeping noise settled at all?
    ErikaS
    Hey @Zigs , I am hanging in there, I hope you are as well. Funny enough, and annoyingly enough! It came back just about three weeks ago in my left ear when I experienced a bit of a spike. It seems to already have faded away again...
    ErikaS
    However, I am pretty sure if my stress levels get really high again, lack of sleep, run down, etc. that will most likely give it room to beep up again. I have 3-4 main noises that have been with me and have never gone away, then there's some other sounds that come around during vulnerable times that seem to fade once I level out again.
    Zigs
    Aw I'm sorry to hear it came back but glad you are hanging in there! I have reactive T too and currently dealing with a major spike or worsening so I sympathise
    ErikaS
    I want to start working out to help my physical & mental state. But I am afraid to with my reactive T, have a fear it will worsen it..
    View previous comments…
    ErikaS
    @MindOverMatter Just finished my workout and even did 8 minutes in the infrared sauna where I focused on breathing and relaxing the mind. Work in progress like you said, thank you!
    Stayinghopeful
    100% go do it. You'll feel better for it. You cannot live your life in constant fear of your tinnitus. It feeds it power.

    If your in the gym you might make it a little more noticeable with elevated blood pressure but it'll calm down and you'll feel really good walking out of the gym.

    Let it do it's thing, you do yours in the meantime.

    Good luck
    Ryan Scott
    @ErikaS I have worked out my whole life running and lifting weights. I stopped after getting tinnitus for a whole year. I started back working out in December and running again the last 3 months. It has greatly improved my mental well being. I usually go to the gym at 5am to beat the crowds.
    ErikaS
    Sharp static quality to ultrahigh sound is back w/spike. Sometimes u don't realize how a sound quality has"improved"until a spike reminds u!
    ErikaS
    Very somatic, can modulate it with jaw and neck movements. So, neck massages, relaxation, and mindset are top priority! Those go great with going back to work tomorrow (insert nervous face)
    Ryan Scott
    @ErikaS how have you been overall since returning back to work? I feel like it's good to get back out into life for the most part.
    ErikaS
    Hey @Ryan Scott I was doing quite well honestly despite work being hectic, stressful, and exhausting and then getting a bad cold two weeks in. But now I'm in a spike and it's bothersome. Hoping I can move through this spike okay as I have to keep going to work. How are you doing?
    Andrew40
    EricaS, sorry for bothering you. How are you I don't understand why I've been getting worse and worse for 8 months... Now my tinnitus has moved from my ears to my head... There are a lot of high tones on each side, razor-piercing... They are reactive...
    View previous comments…
    ErikaS
    I take .5mg of Ativan in AM and PM, and then then 3.75mg of Remeron at night. When I'm stable and doing well, I almost forget to even take my Ativan. When I'm in a spike like now, I am thankful I have it and I am someone who can take it. Depending on how I am, my goal is to wean off both Remeron and Ativan this summer, but we will see.
    Andrew40
    I'm glad for you if the pills help you. Any pills only make things worse for me. I tried a benzodiazepine but on the 3rd day the tinnitus went from the ears to the head, maybe because of the benzo(Phenazepam)
    I also tried Mirtazapine 3.75, but on the 3rd day there was a strong spike A cranio-sacral therapist worked with me for the 3rd day, but it worsened again.
    4Grace
    @ErikaS - working out is very good if it does not make you worse. I so wish I could take meds. Most of everything makes me worse. The odd Benzo spiked me a lot. Great to hear you are back to work. That's great progress. I know it's not easy but that's really good news.
    ErikaS
    Was around vacuuming yesterday w/ my heavy duty peltors on. Ears still got revved up, took 2 hrs to calm. Today, T more quiet than normal...
    View previous comments…
    ErikaS
    @Supersix yes I am, I plan to wean off it in summer time when I'm off from work.
    Supersix
    @ErikaS
    I asked my psych what he would recommend for taper after 2-3 months. He said at 15 mg, you would cut it in half, take it for three days, and then stop. I expected at a higher dose, it would be longer. I take 3.5- to 4mg, like you. He wouldn't tell me at 4mg he used 15mg as an example.
    ErikaS
    Hey @Supersix, the mg amount you and I take is so small that I believe my psychiatrist told me he would do like an every other for a week then wean completely. I told him I want to wean slowly off of anything, and he understood.
    ErikaS
    Sick with "fluid in middle ears and some ear drum bulging" ;( You'll have that working in a school ! Spring break next week, thank God.
    Supersix
    I have been dealing with ear infections my whole life. It's not fun when you get Otitis Media and experience fluid buildup. With T, it's even worse. It's a significant spike for me.
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