Hey Team, We're in This Together...

Discussion in 'Support' started by SteveSkis92, Jul 16, 2015.

tinnitus forum
    1. SteveSkis92

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hi guys. My name is Steve. I live in Virginia and I am 21 years old. Last year, during a very difficult time in my life, I decided to quit smoking regular cigarettes through the use of an Electronic Cigarette. (An ingredient in E-Cig juice, Propylene Glycol, is a known ototoxic substance.) I noticed tinnitus shortly after starting vaping, but at first it was only audible while meditating. I attributed this to loud music, and continued vaping. As the months progressed, my T continued to get worse, but was really only an issue when laying down to bed, and even then I didn't need masking or anything to sleep. It wasn't until I bought a new, more power E-Cig, then a month later bought stronger batteries to create more vapor, that my T started to become intrusive and distressing. I immediately stopped vaping once I made the connection in early January, (it took 9 months to make the connection however. Genius, I know.) My T immediately dropped in volume, but did not disappear. As time has gone on, I have had good days and bad days, good weeks and bad weeks. I am currently in the middle of a very bad week. I don't think it's a matter of my T being permanently louder, it's a matter of my stress and anxiety going through the roof. Stress, anxiety, and some types of marijuana are the only things that cause spikes in my T. (Marijuana only has this effect if I smoke during times of stress. I believe this is just because it raises my anxiety sometimes. Sativas raise my anxiety/paranoia, Indicas typically relieve it to some extent.)

      After doing months of research, scouring the internet, this forum, etc. I have come to the conclusion that my T is most likely permanent. This breaks my heart of course, as I was actually vaping to try and occupy myself legally and safely while I reestablished myself, broke off from old friends, and battled through some legal situations, so I could enjoy this new year and new start. (I was a bit of a wayward youth to say the least, but please believe me when I say that I am now a changed human being.) Live music was my life for years before this. I don't play any instruments, but I have been a bit of a Dead-Head/Floyd-Head for years now, and I used to religiously follow my favorite band, STS9. Unfortunately of course, my live music days are most likely behind me, but this is probably a good thing, just so I don't end up around the same crowd, risking more legal trouble. It is unfortunate that getting T was the wake up call I needed, but it is what it is, as difficult as that is to accept.

      Numerous members on this board have shared great advice, knowledge, and support with me through this difficult time via private message or normal forum posts, and for that, I am SO grateful. (@Kara77 , @Kaelon, and the posts from @billie48 and @awbw8 to name a few) I'd also like to take a quick moment to thank @Markku and all the other staff members of this page for doing such a stand-up job. While this forum can be enlightening and depressing all in the same thread, the information, community, and understanding that can be attained here is second to none.

      I apologize for the short story, but I do have a few questions while I'm here. As I said before, I attribute my T to ototoxicity. From what I have gathered, ototoxic substances do damage to the cochlear and/or vestibular nerve, leading to hearing/balance problems. That being said however, my standard audiograms have all come back perfect, and on top of that, I can hear all the way up to 18kHz in my right ear and roughly 17khz in my left ear. (The high frequencies were a self test done with a online tone generator and my speakers set to the minimum volume.) This is very strange to me as my RIGHT ear is typically the more problematic of the two. I never had any balance or coordination problems what so ever. I have also had moments of complete silence, along with two days in the past 7 months where 99% of the time I could hear absolutely no Tinnitus, even in silent places. Another user here, @JAG credits vaping to causing his T, but his onset was MUCH different than my own, acquiring severe hearing loss only 3 weeks after starting, with a much less powerful vape than my own. All of that being said, should I remain confident in my self-diagnosis of ototoxicity? I have seen my ENT a total of five times about this and had an MRI on my jaw which ruled out TMJD. (I should add that the day after I quit vaping, I woke up with intense ear pain/itch, jaw pain and tenderness, and fleeting facial pain, which I find hard to believe just happened totally coincidentally in unison with the T) Hard to describe, but massaging my jaw literally scratched the itch deep in my ear. My jaw still clicks to this day when opening my mouth, but with no pain, and the jaw tenderness/ ear itch has disappeared at least 95%.

      If ototoxic substances cause tinnitus via damage to the cochlea, does it make sense that I have T with no apparent hearing loss? My T also occasionally pulsates or oscillates, sometimes perfectly in sync with my heart-beat, and other times in sync with every other heart-beat. (I should clarify that I am 99% sure this is not classic pulsatile tinnitus, I don't hear 'whooshing' or 'drum beat' sounds, but my mild ring/hiss goes up in volume/frequency with my heartbeat occasionally.) I can also change my T through ANY somatic movement. This includes moving my finger, applying ANY pressure what so ever to things with my fingertips, clenching my fist, flexing my leg muscles, clenching my toes, etc. Does anyone else experience this?

      To anyone who has read this far, thank you so much for your time, and responses are GREATLY appreciated!
      I am very interested to see what some of you guys/ladies think about all of this. As I said before, I greatly appreciate the time, support, and info that members have already given me here. Thanks for reading guys! Hoping for the absolute best for us all!

      - Steve
      • Hug Hug x 1
    2. billie48

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Vancouver, Canada
      Tinnitus Since:
      Hi Steve, sorry to hear your struggle with T. It is what it is, an unpredictable beast and very hard to control or please. I am not having the symptoms you have that moving body parts can cause T to change. I wonder if this has to do with change in blood flow to the ears/head as some members do have such issue. That is why sometimes people have no issue with T during the day but once they lay on bed to sleep, T is much noticeable (besides the quietness of the bedroom). Try stay positive and calm as much as you can. Your T is still relative new. Sometimes, new T has a tendency to morph into different symptoms such as changing ears, ear fullness/pressure, changing or adding tones, developing hyperacusis or reactive to sounds etc. etc. These tend to get the T victims very anxious and alarmed, and their brain start to monitor T non-stop as it thinks T is a mortal threat. Such tendency will increase our sensitivity to the T sound as well as increasing the anxiety/stress level, to the point that it aggravates T, causing the vicious cycle of 'stress -> T -> more stress -> louder T'. If you have no hearing loss, count that as a blessing/positive. Staying positive and calm and trying to live life again will help in the long run. T needs fuel to light the fire to 'burn' us and keeping stressful and fearful will provide it with the fuel to perpetuate its tyranny. We need to play smart and break its vicious cycle. Take good care and God bless.
      • Useful Useful x 1
    3. awbw8

      awbw8 Member Benefactor

      Tinnitus Since:
      Hi Steve. I know you're going through a difficult time right now - we all know the feeling well. I do not know the frustration of not knowing what caused my T, but I do know that whether we know or not, there's always that feeling of guilt and "what if I had done/not done _____."

      The truth is, you may not know what exactly is causing you T, it may be a number of things. I am always a little wary of jumping on the ototoxic drug wagon because I (in my very non medical opinion and based on my reading) think that people tend to blame that when in reality it takes a very long time for an ototoxic drug to do that kind of damage and in many cases when drugs cause T, it can go away some time after the drug is stopped. There's also a chance that whatever is in an e-citagrette affects blood pressure/other symptoms and that made your T seem worse, but it is not necessarily the cause. We have such delicate, beautifully complex bodies, and sometimes it's hard to say which wire is crossed. So, I think my best advice is to stop things that you know make it seem worse, try to be as healthy as possible (exercise, good eating etc. do matter and help in the short and long run), and try to work on forgiving yourself.

      All of that said, you don't need to stop looking for things that help and you don't need to stop looking for a cause, just maybe try not to need one. Having a label for it is only as useful as the treatment you might get from knowing a label, and those causes which may be effectively treated medically are few. For the rest, it's about working on yourself, making sure you get sleep, getting help with anxiety, fear etc. Talking to a psychiatrist helped me a lot - he was able to help me with meds to sleep when I was in the early days/months and also was just someone to talk to who was compassionate. As a bonus, he's an MD so if I had medical questions, I had someone who had an hour dedicated to me to bounce ideas off of, not a doctor who wanted me out of the office in 15 minutes, so I always recommend that.

      Other than that, I agree with everything billie said above as well. You might, if you want to pursue reasons, look into something circulatory, in which case working on anxiety might help as well. I know that when I am very anxious, I clench my jaw rather mercilessly in my sleep which causes neck and shoulder pain as well as jaw clicking/pain and pretty horrendous headaches. It might not be TMJ, but stress can be a killer.

      Sending good feelings your way, Steve. We're always here to listen and to bounce around ideas. I do think things will get better with time for you, especially emotionally. Hang in there : )
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    4. Gr8fulDude

      Gr8fulDude Member Benefactor

      Tinnitus Since:
      Good advice. That includes going to shows to dance and shake your bones with some of the great bands you love (with good plugs and without getting into trouble). In time you will notice the T less and less as you habituate. Or maybe it will simply disappear. Try not to give it too much thought or attention.
      • Like Like x 1
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    5. Mad maggot

      Mad maggot Member

      New zealand
      Tinnitus Since:
      Cause of Tinnitus:
      I've read other people saying these E cigarettes have given them T too. It should be made known to the general public so they can be warned. Fortunately I've never even had a taste of a cigarette or a drug the wasn't prescribed so smoking wasn't a problem for me. But it's funny that a person whose never got drunk, never smoked or taken a drug should end up with some bizarre ear symptoms and I've never been to a loud concert either - light opera...
    6. PaulBe

      PaulBe Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Probably sound, though never proven
      Some things I would have thought were self evidently a bad idea.
    7. Kaelon

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Boston, Mass.
      Tinnitus Since:
      Cause of Tinnitus:
      Muscle Spasms
      Hi Steve!

      Firstly, I'm so sorry that you've reached this heart-breaking conclusion. I think everyone who suffers from chronic tinnitus reaches this point, and for each person, their reaction can prove quite different. I do want to encourage you not to allow this realization to become a point of discouragement for you, and please, do not lose hope. Like all chronic conditions, Tinnitus can improve significantly with time - especially as habituation sets in. As you and I have had Tinnitus for about the same period of time, I think it's hopeful you will get some relief soon as, in my case, habituation has definitely allowed me to essentially ignore the Tinnitus almost all of the time now and I am back to being almost entirely functional which, at the start of this insane journey, I thought would be very unlikely.

      Secondly, I'm also sorry that you lost of your previous account. I think you and I were having some good conversations over private messages, and I'll just recap some of these here for your benefit:

      First, a bit on Ototoxicity, and then some more on your other questions:
      1. Ototoxicity is an overused/misused term, both here in our community and in general. An ototoxic reaction (whereby you were poisoned and now have permanent damage to the cochlea) is an exceedingly rare phenomenon, but it is certainly known to happen. What's more common than outright poisoning by chemicals is an opportunistic underlying problem that the drug or chemical worsened. An example of this is as follows: people who have circulatory problems will often find that upon taking drugs to address their circulation, they will suddenly contract or experience neurological side effects that, from that point forward, are unlikely to go away. This isn't strictly speaking ototoxicity -- because the drug in question didn't in fact poison you to cause this problem -- but it has the same ultimate effect, that a drug or chemical worsened an underlying problem. This is pretty common for people who have gone many years without routine physical examinations and have had untreated underlying problems (such as high blood pressure, high cholesterol, and insulin resistance). I use these examples because these are common long-term medical problems that the body learns to accommodate in a variety of ways, and drugs that affect them can have a pretty dramatic impact on the body and mind's perception of how this balance was arranged. I am not surprised that people who smoke E Cigs are finding themselves with neurological reactions that are persistent - the unproven chemicals in most mixes will start having more serious side effects that will be discovered as more and more people take these drugs.

      2. True Ototoxicity is multi-dimensional, and not primarily expressed by just tinnitus. Yes, Tinnitus is a common warning sign of ototoxicity and it's one of the first symptoms you experience. But debilitating vertigo, balance issues, and deafness are also very likely accompanying factors with a true ototoxic poisoning. Most of these are short-lived, leaving someone who has been poisoned with damage to their cochlea with short-term balance and vertigo issues and long-term hearing impairment and tinnitus. I do not think it is likely for someone who just experiences tinnitus to have been poisoned and contracted that tinnitus from cochlear damage. If you had real ototoxic issues, I would expect other symptoms to be accompanying the tinnitus, including loss of hearing (although, hyperacusis itself is not so much a symptom as it is a neurological complication of the body learning to deal with tinnitus, and about 40% of everyone who suffers from tinnitus also has H, regardless of ototoxic potential).

      3. Somatic Pulsatile Tinnitus is a recognized syndrome (Dr. Robert Levine has published a bit around his studies, diagnosis, and treatment) where you will exhibit an increase/decrease in volume in the sound of your tinnitus roughly corresponding to the rate of your heartbeat. This is not pulsatile in the classic sense, that there is no clicking, whooshing, thumping, etc. -- the absence of those circulatory sounds is usually a good sign that what you are experiencing is neuromuscular inflammation, very similar to the "throbbing" of a sprained muscle or the "pounding" of a headache. If you can manipulate your tinnitus with movements of your body, this also makes your tinnitus somatic by definition. According to the American Tinnitus Association, about a third of all tinnitus sufferers have a neuromuscular problem that causes a somatic dysfunction that allows them to amplify, change pitch, cause, or silence their tinnitus with bodily movements. They have ordinarily no problems with their hearing. This is what I believe you have, given your explanation. It could have been caused by a physical injury, but more likely than not, a lifetime of chronic and poor behavior led to this onset. It is highly sensitive to change, which is why starting/stopping certain medications or chemicals, like the E Cigs, can seem to have an impact on the intensity of your tinnitus, but what it's ultimately doing is inflaming or countering inflammation your muscles, thereby inhibiting your dorsal cochlear nucleus from functioning correctly. It's important to note that, per Dr. Levine's study, it's the DCN that has been compromised here -- not the cochlea. Again, these are hyper-technicalities that don't really matter to people who suffer from SPTS, but they can hold the keys to helping you learn what causes/amplifies your tinnitus, and in turn allow you to come up with tactics, tips, and tricks to reduce the intensity of your tinnitus. In that regard, you are quite fortunate, because the overwhelming majority (over two thirds) of people who suffer from tinnitus suffer because of hearing loss. SPTS have tinnitus that is disconnected from hearing impairment, generally speaking.
      I will just second what Billie said: stress is the primary factor here that is going to aggravate your tinnitus in the medium term. Once you have begun habituation, you will frankly stop caring about how bad your tinnitus is and you'll just begin pushing it into the background.
      • Informative Informative x 1
    8. SteveSkis92

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hey guys, sorry for the late response. Just moved cities so I've been pretty tied up. Things are starting to settle down though, and I just wanted to take a second to thank all of you for your time, responses, and kind words.

      Hoping for quieter days ahead for us all!

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