ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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 :(
    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…
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    ErikaS
    @grate_biff anyway, after telling him about the Dr Hamid migraine protocol, he wants me to try a sample of Nurtec this weekend, which is a CGRP inhibitor. He knows both nortriptyline and Topamax and was wary about the use of them, especially together, just as my psych was..
    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
    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?
    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..
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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!
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    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.
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    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?…
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    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.
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    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…
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    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..
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    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...
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    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...
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    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.
    ccm302
    Glad to hear you're doing better. How much, if you can tell, did the lidocaine shots help?
    ErikaS
    @ccm302 I only did one round and honestly it temporarily aggravated/exacerbated my T. The nerves even inside my ear canal are on high alert, so the actual puncture of the shot in the ear canal alone I think did more aggravation than any relief the lidocaine would have given me. If you go to the tread I explain more in detail!
    ErikaS
    First week back to work was a success. Overall feelings of gratitude & blessings. Kids are cute, no screamers as of yet! Ears holding up.
    Cmspgran
    Congrats, how's the reactivity, still improving? You're my inspiration being a year ahead of me with exact same symptoms!
    ErikaS
    @Cmspgran my tinnitus is still sound reactive. I honestly cannot say if the reactivity has objectively lessened, but I feel like tinnitus may calm to baseline faster now. I can say that I focus way less on the reactivity now, and therefore do not fixate on its ever variable status. What seems to really upset the T enough for me to notice a significant worsening is getting sick.
    ZFire
    Hi @ErikaS :). How has your return to work been?
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    ErikaS
    @ZFire Thankfully I am in a quiet part of the building and no screamers week 1! This AM they are actually pretty quiet, so cant complain. How's the sleep coming for you?
    Daphne91
    Well done girl! Huge congrats for going back to work, staying busy at work helped me massively in the first months! @ErikaS you'll see, it'll make a world of difference without you realising!
    ZFire
    @ErikaS ! That's so great to hear.. It's another positive step forward on your journey back to feeling normal again, obviously with some adjustments needed.

    I'm really happy for you :).

    My sleep has gotten a bit better. I incorporated some high-intensity cardio that seems to be making a difference. thanks for checking in :)
    SarahMLFlemmer
    How's it going?
    ErikaS
    Hey @SarahMLFlemmer ! Thanks for asking girl. I am doing well, cannot complain, honestly feelings of gratitude and blessings as I was able to get back to work this week. Ears are maintaining stability, they have their moments but my mindset is so much better. How are you doing?
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