Arcanesystem's Tinnitus Updates

Discussion in 'Support' started by arcanesystem, Mar 22, 2020.

    1. Psych
      Wishful

      Psych Member Podcast Patron Benefactor

      Tinnitus Since:
      Many moons...
      Cause of Tinnitus:
      Unknown
      I have the same problem with three serious health issues I'm dealing with. Hope you've gotten some relief since March! :huganimation:
       
      • Hug Hug x 1
    2. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Hey, thanks for responding @Psych! I’m sorry to hear about your health issues. Please remember to take care of yourself.

      My tinnitus has changed a few times since March. Unfortunately, after getting it under control, lately it’s been acting up in my right ear. It’s not been helping my anxiety and sleep at all. In the meantime, I am considering some options to alleviate this mess. Looks like I’ll be getting out the sound pillow again. In-ear maskers have piqued my interest and worst case I may be considering short-term medication for sleep or anxiety. I know this sucks, but we got this far. We just need to take it one day at a time.
       
      • Like Like x 1
    3. cruise
      Relaxed

      cruise Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Unknown
      One day at a time! You are definitely on track, keep it up! Just know that in later stages, even the spikes will just be a little annoying at the most, that is, if they manage to enter your sphere of awareness.
       
      • Agree Agree x 1
    4. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      I sure hope so @cruise. It seems that habituating or waiting it out are the two ways to go, and no matter how you choose to handle it, it's going to take time. In my experience, the scariest thing coming from having a spike is the anxiety and everything else that comes with it (insomnia really sucks...) It doesn't help when it all turns into a vicious cycle. Sometimes it's a hard reminder that the tinnitus is just a noise, nothing else, and that there's really no need to get too worked up. Self-care is incredibly important for all of us. (y)
       
      • Agree Agree x 2
    5. Psych
      Wishful

      Psych Member Podcast Patron Benefactor

      Tinnitus Since:
      Many moons...
      Cause of Tinnitus:
      Unknown
      Thank you. I actually, not remembering this, said spontaneously today, "I don't know what to say, think, do, or feel," in the face of a pretty mild stressor! But encouragement such as you've posted here helps.

      I put in an application to volunteer today, as I can't work a regular job right now, since I'm not able to predict when I'll be able to get out and about, or even on a computer. This is an abrupt about-face, as I didn't even have a doctor before February of 2020. A perfect lesson in compassion! It sounds like you have a good plan going forward, and that is one of the most important aspects of dealing with such a... development. We will do better and better, with practice! :cool:
       
      • Optimistic Optimistic x 1
    6. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      So, got a hearing test today. :whistle:
      The last time I had one of these done was about a year ago. I mean, according to what I'm seeing here, apparently my mid-low frequency hearing loss resolved a bit.

      HT.jpeg

      I know these things are an unreliable indicator of how broken ears can be, but it's still interesting to see where I am after all this time. I lost my old audiogram results, but I think this might be on par with what my ears were like when tinnitus became a problem for me.

      Noticeable things I have done since my last hearing test:
      - Quit working at a loud job (I wore earplugs at this time)
      - I carry earplugs with me everywhere now, but I don't wear them unless I know I'm going somewhere loud
      - I use headphones maybe once a month nowadays
      - Have been taking MANY supplements, but most consistently took Magnesium Glycinate
      - Have been staying at home frequently as my ABSN program is currently being held partially online
      - Listen to my music at a very low but audible level in my car

      There have been a few loud incidents that made me feel nervous:
      - My parents are both loud talkers
      - I was on a city street and a firetruck (yes, a firetruck) with its sirens on drove by
      - Same thing with an ambulance once happened when I was driving with windows down (not making the same mistake ever again)
      - I was in that stupid car where the owner maxed the volume for a song
      - and probably some other loud moments I can't really remember right now

      What my life currently looks like: I go to sleep anywhere between 9 and 11, depending how tired I feel. I have a cup of chamomile to help me get into a sleeping mood. At night I sleep with an oscillating fan on and an extra masking device (like my sound pillow on worse days or just my phone playing nature sounds on better ones). Wake up every day no later than 8. I have been actually enjoying this routine because I have more time in the day now to do things, and it feels so amazing when I'm done with everything and I can just be lazy watching shows for the rest of the evening. I believe this also helped me relax before bed and sleep better. I have been very careful with my diet. I basically go on a superfoods shopping spree and eat everything that's good. Started cooking more. I exercise almost every day, including stretching before and after my routine, a bit of cardio and then pilates. I am currently in a very rigorous nursing program, so I'm also juggling that stress.

      Supplements I am currently taking:
      CoQ10 200mg
      Stress B-Complex (this stuff helps but I miss Magnesium Glycinate, so I'm going back to that after I finish this)
      NAC 1000mg
      NAD+ 300mg
      Resveratrol 500mg (this one I'm probably going to lower to 250mg)

      As for how my current spike is doing... :oldman:
      I really do think it's getting quieter. Maybe it's because I've had more moments of happiness and excitement recently. It's definitely not as intrusive as it was when it initially shot up. There are times where I will be working on something and suddenly I decide to pay attention to it. I admit, I have plugged my ears to see how loud it would be, and I was in disbelief when it started to calm down. I think it's getting better, but I'm not keeping my hopes up because that still counts as thinking about it.
       
      • Like Like x 5
    7. Drachen
      Tired

      Drachen Member

      Location:
      United States
      Tinnitus Since:
      December 2020
      Cause of Tinnitus:
      Currently unknown; likely noise-induced
      @arcanesystem I see so many good signs in that post!

      While you are right that audiograms are only so effective in showing the quality of your hearing, the fact that you have lost whatever dips you had before is still likely a good thing. The positive changes you have made will likely lead to (optimistically) greater improvements in your quality of life or, at the very least (pessimistically) prevent further damage or worsenings.

      I have also felt nervousness from similar loud events you have mentioned. It seems that despite trying to keep my ears protected when I anticipate loudness (such as driving or visiting the supermarket), there are those occasions that can just jump at you out of nowhere. My grandparents are also quite loud when they speak to each other, notably as my grandmother has hearing loss. I have to keep requesting my grandfather not to shout in my ear when he's talking to her.

      Question: Is there any specific reason why you are not able to take Stress B-Complex and Magnesium Glycinate together? This is how I interpreted your parenthetical statement afterwards. I am currently taking the latter and going to attempt to start the former (though with Thorne's B-Complex #12 formula instead).

      Also, have you noticed any improvements based off the other supplements you are taking? Right now, in my experience, I would have to say that Magnesium Glycinate is the only one that has produced some noticeable effect for me.
       
      • Like Like x 1
    8. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Hey @Drachen!
      I think this is just one of those paradoxical things about tinnitus. Protect your ears they say, but it's practically impossible to avoid loud sounds. Unfortunately, the damage stacks over time if it's not immediate. The science behind having this condition really needs to be further explored. There are individuals out there who can abuse their ears nonstop and never suffer the consequences, and then there's me, cringing from upstairs every time I hear someone in the household drop dishes into the kitchen sink.
      Since I'm taking so many supplements already, I try to limit how much I take at once, otherwise I start to feel foggy. Magnesium and Stress B-Complex pretty much have the same effect on me, but I prefer Magnesium because I split it in the AM and PM, so its effects extend into the evening. This is the one I buy and it really works wonders. I also find that it helps me with muscle sores after exercising.
      I would give N-Acetyl Cysteine and NAD+ a shot. N-Acetyl Cysteine is a good damage control supplement from what I've read on the forums. It's helped me become less afraid of sudden loud sounds I can't protect myself from. Nicotinamide adenine dinucleotide supposedly helped someone's ears heal over a long period of time and has reduced their tinnitus significantly. Of course, that can be considered anecdotal, but from what I understand, the body really has limited options when it experiences trauma. One of those options include healing/scarring. I think tinnitus works in the same way - our ears experienced trauma and now they need facilitated healing. Maybe NAD+ can help with that. I take Resveratrol with it because it increases its bioavailability. The only downside is that benefits will take months to a year to notice. I don't really see any immediate effects from NAC because I basically use it as hearing protection, but NAD+ has made me feel more active and mentally quicker.

      I hope this helps.
       
      • Helpful Helpful x 1
    9. Drachen
      Tired

      Drachen Member

      Location:
      United States
      Tinnitus Since:
      December 2020
      Cause of Tinnitus:
      Currently unknown; likely noise-induced
      There is so much about this symptom that is counter-intuitive and paradoxical that it really makes my head spin. Let's not forget how wearing earplugs and ear guards effectively "amplifies" the phantom sound as well, since there's then no ambient noise to hear otherwise. What a sick joke!

      I most certainly agree that more research into this whole area should happen. There needs to be answers as to why this affects people so disproportionately, but even with that in mind, there is still likely over a billion people affected by this! Modern society is very loud, and the overwhelming majority of people do not understand the dangers of hearing loss before it is too late. Why is science not putting as much attention into this global epidemic as it should?

      I would like to hope that we start seeing new research in this field over the next few years, perhaps spurred along by the success of regenerative medicine like FX-322 or OTO-413. More pessimistically, it may be required as I would imagine those younger than us and perhaps a few years older are likely to be susceptible to noise-induced hearing loss thanks to things like constant headphone and earbud abuse.
      Ah, okay. That's probably a good idea! I am worried myself about overloading on supplements, but as I am relatively "fresh" to the game, I want to see if I can get a head start on any sort of recovery or remediation.

      You say you take one of the magnesium pills in the day? I might have to start doing this. My current regimen has be taking both (for a total of 400 mg) about an hour or two before bed, though given how it's supposed to ease stress and anxiety, perhaps I should be taking it before. My only fear if I take it too early is that I then wont have enough of the effect during the evening to late hours. Are you getting to sleep alright? If you are, then I could try this strategy, as I certainly need something to address the anxiety during the earlier parts of the day.
      N-Acetyl Cysteine is something I currently own and do plan to take consistently. I took it for two days, but stopped as I pulled back on everything besides the magnesium glycinate and melatonin due to feeling intermittently unwell. Currently starting to add them back bit by bit to ensure I can handle everything together.

      On the note of protection, have you heard about or considered alpha lipoic acid? This is the only other supplement besides N-Acetyl Cystine (and sometimes magnesium) that has been praised as a potential protective factor. There's mixed literature on its benefits out there, as there is with almost anything, but I've considered giving it a go as well. Not sure if it's needed in conjunction with another protective supplement, though.

      For the NAD+, what made you decide to take that straight instead of the precursors like nicotinamide riboside or nicotinamide mononucleotide? I've been considering these supplements as well, but as you mentioned, they can take months to start having any effect, and that is a massive investment to make given how expensive these supplements are in particular. The fact that you (and others, as I have read) do receive a noteworthy boost in energy and acuity may be enough of an interim benefit, though!

      Thank you for all the help you've provided, and I apologize for butting in to your update thread with so many questions.
       
    10. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      This. When I worked at an animal hospital, I wore earplugs because there was dog barking constantly and that could reach higher than 85 dB. This left me stuck listening to my tinnitus for 8-12 hours a day, which at times felt like torture. But I'm glad I took that route. Around the time I left, a friend swore to me that she experienced hearing loss during her employment there.
      One of the outstanding problems I see with tinnitus research is that 1) so many studies are barely consistent with what they're trying to focus on with this condition and 2) I'm barely aware of any studies that bother to keep pursuing tinnitus in order to explore further findings. There is research that focuses on the limbic system, then the auditory cortex, then nutrition, hearing loss, brain plasticity, etc... It starts to become a random poke and prod of the possible anatomical/physiological explanations for what could be causing ringing in the ear. And maybe that isn't completely fruitless because there are multiple causal factors of tinnitus, but from the top of my head, I can barely name organizations or research groups (including the regenerative medicine companies you have mentioned and a few others) that have consistently tracked this condition over the years and pushed our understanding further.
      Unfortunately, I think this is true. Today's youth is not going to have fun suffering from the damage of in-ear devices and loud music. It seems everywhere I go when I want to get out of the house, there will be loud music playing - the grocery, cars, malls, restaurants - pretty much any store, establishment, event. My younger brother for example listens to his music in the car at a very loud level. He is also constantly with his AirPods/headphones. My family members haven't taken me seriously about my concerns. FX-322 can have my literal soul with what it has in store for us in the future.
      My thought process with this method is that I wake up, I calm myself for the day with the first dose of Magnesium. Usually that is enough for me to get through the morning anxiety-free and after that I let my daily life distract me until the evening when I'm ready for my second Magnesium. I have taken the second Magnesium before bed to promote sleep, but since I think Chamomile is helping me, I switched to taking Magnesium at dinner. Currently, I am sleeping well.
      I have not heard of this one. Looks like I have some reading to do. If it's cheaper and easier to find than NAC, maybe I should try it.
      Yeah, that's what really sucks about all these supplements. Resveratrol and NAD+ are expensive. At second glance, it turns out that I am actually taking Nicotinamide Riboside, and there's also that big fat misleading NAD+ on it lol.

      NAD+.jpeg

      I should mention that I don't know if this brand is the best to buy. I hear good things about Tru Niagen. I just get mine from the local vitamin store, which, with the convenience, is not the best financial decision I'll admit. I think someone recommended buying in bulk through a subscription service from the actual vitamin company, but that also requires a lot of money! I guess try one bottle, see how you feel about it. I would recommend taking it concurrently with Resveratrol. See if it has any worthwhile benefits while you're taking it. I enjoy feeling a bit more active and smart (even if that's just something it's make me FEEL and I'm still just dumb and lazy lol), so I think I'll continue sticking with the stuff until maybe something magical happens to my ears. :D
      It's not a problem at all! Actually, for what it's all worth, I think it's useful having these conversations since they're bound to help someone else out there.
       
    11. Drachen
      Tired

      Drachen Member

      Location:
      United States
      Tinnitus Since:
      December 2020
      Cause of Tinnitus:
      Currently unknown; likely noise-induced
      Very sorry to have taken this long to reply. Both today and yesterday have been awkward to uncomfortable for me due to my issues, and I wanted to get back to you when I could manage a proper response.
      I'm really sorry to hear that regarding both your experience and your friend's. I must say that this symptom has given me some pause when it comes to handling dogs. My grandparents have a Yorkshire terrier that loves to bark at anything that moves outside the house, and he's certainly been a bit of a pain since this all began. Thankfully, a lot of his yaps are muffled since I am upstairs in my room most of the time, but it still can be irritating. I can only imagine how that would be in a straight up animal hospital.
      You've completely nailed it as far as I'm concerned. There appears to be no direct focus when it comes to the already limited research there is done with regards to this condition. Whether this is better or worse compared to the alternative of just picking on path and going hard on it, nobody can really say. It's just frustrating all the same that this symptom is so prevalent and there is still so little being done about it. I feel the need to cite the fact that this is the majority cause for disability claims for all United States military veterans. That alone should be enough to get the Department of Veterans Affairs (or even the Department of Defense) to invest heavily into research, but they perceive the billion upon billions of dollars they receive to be spent better elsewhere, I guess.
      I have become so acutely aware of how loud the world is now that I've been compelled to attention. To mention a particularly good point when it comes to the grocery store, and I can imagine it's much worse in malls and restaurants (not even confident enough to go there during the current pandemic situation, if they are even open).

      I'm really sorry to hear that your family isn't as attuned to your needs as they should be. I don't think my grandparents fully get it either, though my grandfather is coming off as much more sympathetic and willing to be quiet around me when he remembers. I think having to experience a symptom like this really makes you understand how vital it is for both yourself and others to have empathy. I think all too often that people don't try to understand what it's like to be in someone else's shoes and endure the same trials they must face on a day-to-day basis.
      Thank you for the idea! I will be trying this for the next week or so then in hopes that it might take part of the edge off the earlier parts of the day. The only issue here is Magnesium Glycinate, to my knowledge, is best taken on an empty stomach. I have other supplements to take on an empty stomach, especially Zinc Picolinate (which I took before onset but want to reintroduce), and I've read there can be a competition for absorption. I've really tried to do what I can to limit the times I take supplements to feel like less of an old person, but I guess there's not much way around that.
      According to Amazon, and specifically going by the Thorne brand, NAC is cheaper than ALA. I'm not sure why this is honestly, and I'm not sure which is better, but it's something to consider at least. There are other brands for ALA such as this one that are much cheaper, though.
      It's probably fine, but I will have to admit that one of the issues for me when it comes to supplements is not only knowing which brand is the more trustworthy but also how the supplements were handled and stored prior to entering my body. I must admit that I'm slightly concerned ordering stuff on Amazon as I'm sure they don't really care that much about handling anything appropriately considering the volume they have to go through, but I'm less worried now since this is winter and, to my knowledge, supplements are mostly at danger when they are heated up instead of cooled down.

      I also agree with your reservations as it pertains to subscribing. If I had reasonable certainty that the supplements would work in my case and provide a decent enough benefit, then I think I wouldn't mind taking that plunge at all. As an unemployed college student who's already pushing the limit with regards to the supplements I currently take, I'm not sure that's a feasible strategy for me.

      I do think I may give it a try once I get all my supplements re-added and going without any major side effects.
      Absolutely! That's how I try to split my time here on the forum at least. When I'm not trying to solicit help or opinions, I try to offer it in turn. It's the only way I see a community like this not only being helpful but sustainable in the long run, and it's obviously worked out so far.

      This is more or less the best way folks can help each other when it comes to this condition: talking, extending support, and offering advice. I know we all wish there was more that could be done, but until treatments and cures and such come along, it's really about doing what we can.
       
      • Agree Agree x 1
    12. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      I finished another semester, so I think it's worth checking in again.

      My tinnitus has become more tame since my series of fluctuations. I had a spike start a few weeks ago in my left ear, but I would attribute it to the stress I was getting and the sleep I wasn't getting during finals week. I had the same spike back in December and it subsided after a month, so I'm patiently waiting.

      Since my last update, I haven't really changed my daily routine. I still carry earplugs everywhere. Obviously I don't go to concerts, clubs, loud events, anything like that. In terms of loud places, if I'm going somewhere like a restaurant or the grocery, which can be loud as f#ck, I don't worry about spiking afterwards. I also feel like the anticipation of my ears getting worse would just stress me out more, plus I've accepted that loud situations are inevitable. Other than that, I'm still mostly at home, still doing school. I'm halfway through the program, the two most difficult semesters being down, so it should be smooth sailing from here on. I used to occasionally use headphones, but now I don't use them because I feel like I don't need to. Instead, I currently use a Bluetooth speaker at 1-2 volume to hear my music better. Perfect for studying or working out.

      I still try to get to bed before 11 and be up around 8 on days I don't have off. I started sleeping with a sound pillow every night. I don't really need the masking aspect of it so much as it's just more comfortable to sleep on. My old memory foam pillow was giving me a stiff neck so I stopped sleeping on it. I recently started eating meat only 2-3 times a week while going vegan the rest of the days. As pretentious as that sounds, overall I feel pretty good. I haven't had any crazy cravings and I'm surprised at how much I can make and eat with just plants lol.

      Supplements: I'm only doing Magnesium Glycinate 400 mg and NAC 600 mg right now because I only have faith in the preventative aspect of supplements at this point. I actually started taking CBD. I guess I'm one of the lucky tinnitus havers in respect to the fact that I don't spike after taking it. While it doesn't impact my tinnitus, I do enjoy my mood after taking it. I use a broad spectrum water-soluble for when I leave the house to get that instant anxiolytic effect and I used a full spectrum oil tincture specifically at night for sleeping in on days I have off. I have to say that sleeping with this stuff is absolutely amazing.
       
      • Hug Hug x 2
      • Like Like x 1
    13. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Congrats on going through school with this shit - that's a real accomplishment.
       
      • Agree Agree x 2
      • Like Like x 1
    14. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Thank you. I wouldn't wish tinnitus on anybody. I'm grateful that I had the perseverance to make it this far.
       
      • Winner Winner x 3
    15. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      My first 2022 update. I’m actually really glad that I made this thread because I’ve been tracking some of my major spikes and I never realized how it could help me right now. I suspiciously have a very loud spike at the moment that is similar to what I had in my other ear APPROXIMATELY A YEAR AGO. They’re both similar in nature and started in late-December when the weather was getting crazy with snow. It’s a very, very strange coincidence and it makes me wonder if the spike is connected to the weather, allergies, or the general stress and excitement during that part of the year. Granted it took over a month for the sound in my left ear to completely disperse, it fills me with hope that this current spike will resolve as well.

      Also, I should point out that I had suspected that my spike last year was caused by a car I was in where the idiot driver turned the volume all the way up for a song. I don’t want that situation ever again and I don’t think anyone with a sane mind should do something like that, but what I’m trying to say here is, I was able to heal from that and I haven’t really experienced anything remotely that loud with the exception a few restaurants that come in close with the volume (Korean BBQs are fuxking loud). In any case, I’ll keep coping.
       
    16. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Yesterday was the one ‘good’ day I had since this spike started. It was the calmest it has been, which made me feel amazing, like I was making progress. It seemed like my regular sounds were all back at their regular volume with an occasional irritated hum. Didn’t last til today though.

      Something I noticed that happened last night: I was lying in my bed with my laptop against my pillows in a pretty bad posture, and I felt this weird numb sensation across my neck/shoulder/ear that felt like I pinched something or cut off circulation accidentally, and my tinnitus just exploded back to its peak volume. Usually when that happens to me, I get up and try walking it off because it’s usually just fleeting and will calm down after I get rid of that ‘foot falling asleep’ sensation. The volume did calm down after I stood up and straightened my back, but it has been irritated since, and I felt all of today like I’m back at square one. I really hate these mystery games my tinnitus plays with me…

      I thought it was possible that the fluctuation with the weather could be causing my congestion as the side of my face with the spike has been feeling clogged and stuffy with mucus in the AM. But yesterday’s incident makes me wonder if poor posture is compressing or irritating something in my ear. I was thinking of getting a humidifier since the weather has been spontaneous as hell here. I might need to get a better pillow too. What I normally use is a sound pillow, but I think many can agree those aren’t the most comfortable to sleep on. If this continues, I might have to make another (pointless) annual visit to the audiologist and make sure my hearing isn’t truly worsening. I have started to wear plugs while going out and being around loud as fxck family members. I guess I’ll use my previous incidents as a timeframe. The longest spike I’ve had completely resolve lasted about a month-ish, so I’m giving myself until February for this thing to calm down. Since there’s so much to rule on what’s causing this spike, I’ll go see an ENT probably and schedule a hearing test at the end of the month.
       
      • Hug Hug x 1
    17. Guywithapug
      Dreaming

      Guywithapug Member Hall of Fame

      Location:
      USA
      Tinnitus Since:
      10/2020
      Cause of Tinnitus:
      SSHL
      Very interesting to read about your experience with your spike, I do think it's valuable to give yourself time to see how it heals or lack thereof.

      I've had my baseline hiss now for almost a year and in that time, I have had spikes and other odd sounds being introduced. Luckily, they all subsided and I just have the hiss now. So time is very valuable in my opinion and I'm hoping it serves you well regarding your situation!
       
      • Optimistic Optimistic x 1
    18. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      @Guywithapug, yeah, definitely agree on giving time for healing. If I had one good day, there's bound to be more. As for the fact that it's a random spike, there is a possibility it may subside. Anxiety will only make things worse, so I'm trying to stay calm. I've been reading around about cochlear hydrops and it sounds like the symptoms are identical to mine. Luckily, there are interventions available that have helped some people with hydrops, so I'm willing to try them.
       
    19. DimLeb

      DimLeb Member

      Tinnitus Since:
      03/2021
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      @arcanesystem, hello there, hope you're doing good! I just read your post about speculating hydrops and trying an AIP diet and I'm wondering what your plan is. What meats, fish, fruit etc? I've been looking at it and also, looking at John of Ohio's regimen.

      I'm also considering hydrops after having a scary experience with diplacusis/distortion (different pitch on each ear for some frequencies - 900-1200 Hz) for a few hours a few days ago. My situation: mild bilateral multi-tonal tinnitus (fluctuating) for 10 months, mild visual snow, TTTS at short sounds and normal hearing on audiograms (age 28).
       
    20. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Hey. So, my current knowledge on cochlear hydrops is based heavily on reading around online. I haven't really officially visited a doctor to get a true confirmation, but I've always had spontaneous tinnitus that likes to switch around every few months. It's made me suspect that there is something unusual about it. I've had previous mid-lower frequency hearing loss (500 Hz) confirmed by an audiogram a few years back which had resolved. My 'bad ear' is my right ear, though I have bilateral tinnitus, I've always had the nastier spikes on my right side. These past two weeks I have been having these fleeting attacks where I would get a really loud tinnitus volume in my right ear for hours, and it would get so loud, I could barely mask it. I would also have ear fullness and congestion on my right side every time that happened.

      I've read through patient stories about what works for cochlear hydrops. It seems that the AIP diet, sodium restriction, OTC allergy medications, exercise, and hydration were some of the most popular interventions.

      According to this old article, treatment interventions include "diuretics, low salt diet, and vasodilators."

      Diagnosis and Management of Cochlear Hydrops

      There is also this Italian doctor, Andrea La Torre, I ran across a few days ago that discusses hydrops in depth. I don't speak Italian (still learning) so I've mostly been reading his site with google translate on a manageable level. I'm not sure how legitimate his statements are, but he seems to mention the same thing about having a good diet and maintaining hydration.

      https://www.drlatorre.info/

      For the AIP diet, what I won't be eating is grains of any kind, no beans, seeds, nuts, or legumes. I think a very, very few spices are off the table too (my list says allspice, anise, pepper, poppy seeds, celery seeds, cumin, caraway, mustard, nutmeg, and fennel seeds), but I will probably cheat unintentionally on this one. No dairy and eggs, processed foods, sugars of the artificial kind (unless it's like fruit or kombucha or something like that). No nightshades, but like spices, I probably won't hold out on tomatoes because I love them. Also, avoid alcohol and try to keep sodium intake on the lower side.

      All basic meats are ok as long as they are low on salt. Vegetables that are not nightshades are good. Fruits are good. Most spices are ok, and you can have healthy fats like the healthy oils and animals fats. Fermented foods that are ok are sauerkraut, kombucha, kefir, kimchi. Some other stuff that is permissible: apple cider vinegar, natural starches like coconut/almond flour, honey.

      I did adhere to AIP for one day and I really was happy with how calm my tinnitus was during my current spike. Also, no fleeting attacks, which was amazing. I decided to try out and see if eating unhealthy the next day would make my ear irritated, and it may have been a coincidence or a consequence, but my ear did get irritated again. Something else I will be trying is a warm air humidifier so that my ears don't get stressed out with the fluctuating weather we're having. I think the switches from dry to humid air are really screwing with my ears. Anyways, I hope something works out for you.
       
    21. buttercake

      buttercake Guest

      Just chiming in to say that there is another "famous" Italian doctor specialized in hydrops and Ménière's, his name is Fabrizio Salvinelli. He is full professor in Rome. Good luck with everything.
       
      • Informative Informative x 1
    22. DimLeb

      DimLeb Member

      Tinnitus Since:
      03/2021
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      @arcanesystem, sorry to hear about those attacks, they sound tough to deal with. Good they are temporary at least!

      Thank you for the detailed explanation! It's nice that this diet seems to be working for you! All these months that tinnitus appeared, I've been eating very cleanly (almost no salt, lots of veggies and fruits, no processed stuff etc) with very little cheating (occasionally burgers and other fast food), but I didn't found any correlation with the ears.

      Also, I've been eating every day eggs, nuts and sometimes diary stuff (low-fat), but still no observable spikes or improvements. My tinnitus (mostly mid-range pitched) just stays mild, although it is erratic - many tones appear and disappear, weird noises etc, but thankfully volume isn't a problem. No ear pressure and no hearing loss, either.

      But still, I'm gonna try some of that to see if I can prevent future stuff. I've been taking Vitamin D, Magnesium and Ginkgo Biloba, B Complex on and off that may be/have been helpful as well.

      The worst thing is that there is not much we have to try out apart from diet, exercise and some lifestyle changes...
       
    23. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      @DimLeb, I think my last 'attack' was 3 or 4 days ago, around the time I started to eat clean. Other than that, I don't think there are any improvements. My ear was agitated again past two days, but I realize that there's nothing much that can be done except to wait it out. Many people say their tinnitus at least gets quieter over time. Diet is that kind of thing where unless you have a form of deficiency/excess or primary disease process where tinnitus could be a secondary symptom, it probably won't be a miracle. Inflammation is common in some with tinnitus, that's why reducing certain inflammatory foods may help. In terms of supplements, the only thing I still bother taking specifically for tinnitus is Alpha Lipoic Acid alternated with N-acetylcysteine for any potential worsening. It's like you said, not much to do about it, just wait and be careful.
       
    24. AUTHOR
      AUTHOR
      arcanesystem
      Disappointed

      arcanesystem Member Benefactor

      Location:
      USA
      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Unknown; Possibly noise-induced
      Just a quick update: I think the spike is starting to settle slightly. I’m trying my hardest not to pay attention or listen to it as that has resulted in an excellent past three days for my mood. Leaving the house and doing things I like have helped. It’s not as sharp sounding as before and seems to become even intermittent at times. Thank goodness for that because when it was constant and relentless, it was difficult to focus on things. It also starts to fade into my baseline tinnitus when I’m in a silent room, at which point I can’t really tell if it’s still there anymore. The diet is helping my stamina during workouts more than my ears, but I guess I’ll take it. I’m bringing back coffee and sweets once the month is over though.

      Some more changes that have been happening: it has become incredibly somatic and reactive to sounds, including my voice. I touch any part of my face on the spike side, yawn, touch my ear, rub my eye, it gets loud. I’ve hunkered down at home and stayed in quiet consistently with some mildly-audible music or white noise in the background, which I believe is helping my ears. Muffs stay on when I’m cleaning/cooking/around loud family members. I also have been wearing plugs to places like the mall and a couple of restaurants. No problems so far. Another thing is that I have been having more frequent fleeting tinnitus episodes with the spiked ear. They do not last for hours as they did when I first got my spike - only a few seconds now - which I think is a great improvement. The climate here has stabilized, which I think may have helped my ears as well.

      Currently the only thing that occasionally troubles me is sleep. I only use a fan to mask my tinnitus now when I sleep, but the spike loves to sing along with other sounds, so I get decent sleep maybe every 2 out of 3 days.
       
      • Like Like x 1
Loading...

Share This Page