Why Do Doctors Say Tinnitus Won't Hurt You?

Discussion in 'Support' started by jeannie, Aug 25, 2015.

tinnitus forum
    1. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      Why do doctors say tinnitus won't hurt you????well.....YES IT WILL!!!!! It can cause constant anxiety,panic attacks ,depression which in turn can cause blood pressure to go up and could cause stroke or heart attack.we take seizure meds to try to help us which can cause severe damage. And cause other serious medical issues even life threatening... It makes us have insomnia (like I have now at 400am)which can cause us to be tired the next day and more prone to get. Into a wreak....this crap wreaks havoc on us and can hurt us!some may not agree but this is just how. I feel.
       
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    2. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      @jeannie
      don't listen to your doctor
      My GB understand my pain he prescribed me neurotin my T decreased by half and I am going well
       
    3. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Can only agree. Freaking-loud T (like I have most days) causes all what you describe above.

      Sitting at home in my "comfort zone" trying to work as good as possible. Just found a job offer which fits 100% to my profile. I am still working for my old company since they give me all support possible (working from home, less work). But to see a great job offer and knowing I could not do the job because of the dog whistle in my head makes me depressed.
       
    4. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      Preslys,what mg.of neurotin do you take?I have some but was only taking 100 mg. A day for a week then stopped it.
       
    5. Steve721

      Steve721 Member

      Tinnitus Since:
      1/2015
      My GP certainly recognized that tinnitus can be debilitating, and he immediately (after a phone call) prescribed anti-anxiety medication (clonazepam) and sleeping pills; I've already been on an antidepressant for years. My GP also referred me to an ENT, who did a complete work-up and sent me to an audiologist. The audiologist found moderate hearing loss, and I was fitted with hearing aids which, fortunately, in my case greatly reduce the perceived volume of my T. I even spoke to Dr. Nagler about traveling to Atlanta to see him, but he didn't think it was necessary given that I've had T for only 6 months and that my T hasn't disrupted my life that much. So there are at least some doctors who recognize the problems that T can create.
       
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    6. Sailboardman
      Frustrated

      Sailboardman Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/21/2014
      Cause of Tinnitus:
      Sensorineural hearing loss right ear.
      Neurontin gave me bad headaches, earaches and caused my good ear to have periods of T.

      I was on 300mg a day. 4 weeks on it and I stopped. Now I just do holistic stuff, like NAC, vinpocetine, vitamin supplements.

      Does anything work? Probably not. Basically, my life sucks!

      Also be wary of benzo's of course. Short term use only.
       
    7. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey @preslys, funny, I was just going to post on this...
      I came down with a severe case if shingles early last month (which let me tell you, is no fun. I recommend to anyone over 50 who has not had a shingles vaccine, go get one. Just my opinion. Wish I would have).

      Anyway, my GP gave me Neurontin (generic gabapentin) to both help with the pain and ward off postherptic neuralgia, or chronic nerve pain that can stay with you for years -- or even FOREVER -- after you have had a shingles attack (please see above warning about getting the vaccine). Never had heard of Neurontin, which originally was designed as an anti-seizure drug for epileptics. But I noticed, as my shingles progressed, hey -- doesn't my tinnitus seem quieter? Thought that was odd, given I thought being so ill would make my T worse. And then I discovered that Neurtontin, for some time, has been considered a possible treatment for T.

      Others have written about this here at TT, and some research has been done. Turns out that some small studies have suggested Neurontin is beneficial for those whose tinnitus came from acoustic trauma. Mine did not -- but it did come from barotrauma, vs. the natural hearing loss that comes with aging.
      TT thread here: https://www.tinnitustalk.com/threads/gabapentin-neurontin.3162/page-3#post-107562
      Managers, feel free to merge this post with that thread, if you want.

      I see you have posted on the above linked Neurontin thread before, @jeannie? A 100 mg of gabapentin is going to do absolutely nothing. Also, you will need a doctor who can give you a dosage schedule that will slowly build the amount of gabapentin you take.

      Be aware if you are considering taking Neurontin: It's a serious drug, yet another one that tinkers with your brain chemistry. Basically, it dulls the mechanism that causes your nervous system to sense pain (among other things). I am taking 1800 mg daily. You have to build up over time. Initially, I could not even drive after taking just 300 mg daily. And you need to wean off slowly, like anxiety meds. You cant just stop taking it. Also, some people cannot tolerate gabapentin at all. And: some patients on gabapentin have reported suicidal thoughts, enough of them that there is a warning attached to the drug regarding this.

      My main side effect with Neurontin now is it makes me really tired and sometimes very foggy, in terms of brain function. I have forgotten two appointments for work since I have been on this drug, not like me at all.

      Gabapentin is not, however, classified as medication that leads to dependency, like benzos and other drugs, meaning doctors might be more likely to prescribe it. There are other gabapentin drugs under different names, but Neurontin is the most common.

      I understand (although cannot find a reliable link clarifying this) that the GABA supplement you can get in the vitamin store with no prescription is loosely related to gabapentin, but not the same in efficacy. And I will tell you that I took GABA when I first had tinnitus and had terrible heart racing symptoms, to the point I was going to go to the ER.

      Hope this helps! At this point, I still am on Neurontin, as the protocol for neuralgia prevention post-shingles calls for an eight week treatment. Will let you all know how I do with tapering off. If my T ramps back up, I will have to decide if its worth the side effects to continue.

      Oh, and to the original question from @jeannie: I think the reasons some (not all) ENT and GP docs tell you tinnitus won't "hurt you" (my ENT said the same thing) is "hurt," in their lexicon, means it is a symptom of life-threatening disease like a brain tumor (although, of course, in some limited cases T can by a symptom of a brain tumor). They don't think about all the terrible damage that stressors like anxiety can cause. I encourage all of you, if your doctors use this language, to correct them.
       
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    8. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      @LadyDi I noticed the same thing when I first began taking GABA. I really felt like I was having a heart attack, not just because of my heart racing, but also with nausea and a "sense of impending doom" as the doctors call it. This happened with maybe the third day taking it. Ever since then, when I took GABA during the day, it made me feel kind of queasy.

      I stopped taking it during the day and now take a 500mg at night about 10 minutes before going to bed, and then another 500 mg about 10 minutes after I'm in bed, along with a niacin supplement. It helps me sleep better, and so far no adverse symptoms at all from the GABA. Maybe it has to do with how GABA interacts with our level of alertness.

      @jeannie Sleep deprivation is a major factor in our state of health. I am all too aware of how tinnitus has affected my health, my sense of well-being, my ability to concentrate and remember things. My congitive functioning has been severely affected, and, yes, I've come close to making some really serious mistakes due to brain fog when the tinnitus is screaming. I also have to set my phone alarm to let me know when it's time to give thyroid medication to my dog, which I never had to do that before.
       
    9. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hi @Cheza: Yeah gabapentin also really knocks me out -- or at least it did in the beginning. But it does less so now that I have been taking it almost seven weeks. I also took GABA during the morning, and on an empty stomach (as directed by the person who sold it to me). I haven't tossed the bottle, so maybe will try it again at night if I go off the Neurontin.
       
    10. Rina
      Energetic

      Rina Member

      Location:
      florida, USA
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Really don't know
      I was prescribed neurotin but I was too afraid to take
      It... I took it one time and did not like the side effects ... Nervousness and nausea... I felt confused.. I only took 100mg... My T has gotten better without any specific mess other than supplements... In wondering if I should indeed then take it now...?
       
    11. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      thanks to all of you... im pondering of whether to take neurotin or not supposed to be taking more but im afraid..... I took it for a week and it did nothing for me ( probably due to not enough) but I took 100 mg yesterday and got high as a kite for some reason and was very nervous last night...... drugs seem to affect me different all he time... maybe my fibromyalgia....
       
    12. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      If Neurontin made you nauseous and nervous and confused, and if your T is getting better without meds, then don't take Neurontin again. Any drug strong enough to treat epilepsy should only be used for T if absolutely necessary.
       
    13. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey @jeannie and @Patricia18, don't want to hijack this thread but since Jennie is asking about Neurontin and is the thread's author:

      One time (or even one week) with Neurontin is not enough to determine if it will work. Like a lot of drugs that interact with brain chemistry, it takes a bit to see if it will work for you. Starting dose usually is 300 mg daily: one in the morning, two at night (because it makes you sleepy). Ideally, you want to get to three doses, divided equally across your waking hours.

      As I mentioned above, Neurontin initially made me feel very strange/groggy, and I had to work my way slowly up to higher doses. But I do believe, at least for now, it has lowered my tinnitus. Like a lot of brain drug stuff, though, that could all end tomorrow. These are tricky meds and your docs need to know how to tinker with them, including when to take you off them and how. NEVER quit any of these drugs (anti-seizure, anxiety meds, anti-depressants) cold turkey. Can't say this too many times.

      Ironically, Jeannie: Neurontin can be prescribed for fibromyalgia, as it works on pain receptors.

      Patricia, if your tinnitus has gotten better without medications, good for you. I wouldn't be eager to add meds to the mix. I never would have taken Neurontin if not for intense shingles pain. It's a serious drug.

      Best wishes to you both.
       
      • Like Like x 1
    14. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      @jeannie ,


      I take tow pills of 200 mg per day, I have no side effect at this moment, My GB told me that you can take it forever .if I feel any side effect I will stop it. Now my tinnitus bothers me only at night.

      As I see here we are all different It works for some persons and not for some others.

      @LadyDi
      thank you for all your advices ;)
       
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    15. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Thanks for posting, @preslys, glad you are doing well. Indeed, we all are very different when it comes to our tinnitus, responses to treatments and medications, etc. It helps me, though, to learn about others' experiences. I will be curious to see if my tinnitus continues to stay low as I cut back my Neurontin dosage. I am taking a lot and really want to reduce it as my shingles pain resolves.
       
    16. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      there are ways to deal with all of these problems, and it's less useful for doctors to tell you "this is going to ruin your life" than to tell you "this will not ruin your life".

      I've now had intrusive, high pitched, constantly audible tinnitus for more than 5 years. I do not like it. I think about it far, far more than I would like to. It impacts the quality of my life. BUT, it does not cause me panic attacks anymore. It does not cause me constant anxiety or depression. I have found ways to manage the anxiety and depression that it does cause without making them worse. I can go out and do things and get engaged in them, and when I do I often go minutes/hours, even whole afternoons where I barely think about my T. It's just not worth putting any extra conscious energy into, it's there, just like my visual static, just like my chronic joint pain. It's not going away.

      I don't know if your tinnitus is worse than mine, it might be, and if my tinnitus was a lot worse then it would probably be hard for me to manage it as well as I do (which is, frankly, still not great). However, just from the way that you've phrased this post, it comes across that you're engaging in a lot of rumination and very anxious thinking -- if you can find a way to step out of that and stop doing it, then you may find that the health impacts of your tinnitus are less significant, even if the tinnitus itself doesn't change.

      Again, I am not claiming to have it all figured out, or suggesting that the things which have sort of worked for me will necessarily work for you -- I'm just suggesting that there was a time when I would have 100% agreed with the post you made here, and that I have changed and no longer feel that way.
       
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    17. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      I have figured it all out! ;)

      If one does NOT have tinnitus they have no idea what its like to have T. It is an invisible condition/symptom so it is perceived as not causing harm.

      Tinnitus itself does not cause harm but other issues related to it, affected by it or amplified because of it-- DO & can cause harm and more. Doctors (unless they have T themselves) will never understand this so it is no use trying to make them understand or complaining that they do not. We have all tried to convince someone who does not have T what is it like to have T and you know what I mean. You can play them a sound like T but that is still not the same as the 4 sounds I have in my head right now, along with crickets and whistles which fluctuate throughout the day from low to very loud. There is no way to convey that to anyone, including doctors. And on top of that I have H, which thankfully is mild now but there was a time when it was far worse than my T.

      It is up to us as a community and individually to support one another, respect one another and fight though this. A cure may or may not happen. A treatment may or may not come along. I don't intent to wait for something I have absolutely no control over and that is why I have chosen to forge ahead and not live in fear of my H or my T! (Cue Pep Talk Anthem!)

      C'mon we're all in this together!! :puppykisses: :popcorndrink: :huganimation: :beeranimation:
       
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    18. RicoS
      Confused

      RicoS Member Benefactor

      Location:
      Netherlands
      Cause of Tinnitus:
      Stress or Acoustic trauma
      I ordered Trobalt but got Neurontin instead of it. Did you decrease continued after Trobalt when you started Neurotin? Do you feel positive effect from Neurotin or could it be possible that it is Trobalt that kept you at that level after quitting? I have to boxes of Neurontin (gabapentin) still in my possession (thats about 200 pills) and only tried it for 2 days 100mg a day or something....I don't know...was to scared to take it and read that it did nothing for T, but was rather safe.

      Do you have any side effects with Neurontin? Glad I at least did not throw them away ;-)
       
    19. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      I was wondering for all of you on neurotin....any new updates ?is it still helping keep tinnitus low?
       
    20. Sailboardman
      Frustrated

      Sailboardman Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/21/2014
      Cause of Tinnitus:
      Sensorineural hearing loss right ear.
      Neurontin did nothing for my T and gave me bad headaches and earaches after a while. It also gave me some periods of T in my good ear! Not worth the risk for me.
       
    21. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
    22. suera

      suera Member

      Tinnitus Since:
      02/2010
      because they are ignorant
       
    23. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hi, @jeannie, I may go ahead and post in more detail on the Neurontin thread as well. Have been meaning to do so.

      Anyway: I just stopped taking Neurontin about a week ago. As I mentioned above, I started taking it around July 9, under my internist's supervision, for severe shingles pain. She worked my dosage up to 1800 mg daily, which I reached around July 19. I then stayed on that dosage until Sept. 8. Initially the drug made me feel pretty out of it but I built up a tolerance to the side effects quickly. And yes, my tinnitus definitely was quieter under the drug. Probably dropped from daily highs of about 5-6 to about 2-3. I would have some moments where I could barely hear it.

      BUT: In early September, I suddenly starting feeling very weird. Disoriented, dizzy, feeling I was outside my own body. I sometimes would wake up at night and I think I was not in my own bed. Asked the doctor if this could be related to the Neurontin and she said probably. So we started backing off on the drug slowly and I quit it completely last week. The disoriented feeling has gone away. And yes, my tinnitus is back to its former levels.

      So, is Neurontin worth it? Not to me. I believe this med was seriously screwing with my brain. The literature shows some people become suicidal on Neurontin. If you want to try it, you definitely need to do it under a doctor's care, increase your dosage very gradually, and cut back the same way. Also, many people here at TT have reported Neurontin did nothing for their tinnitus. But I believe in may case, it did tamp down the noise.

      Also, everyone's reaction to this and many drugs will be different. I believe some here have reported no side effects from Neurontin. This just was my experience.
       
    24. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      thanks LadyDi, for update! i have some but am afraid to take a high dosage of it.
       
    25. Rina
      Energetic

      Rina Member

      Location:
      florida, USA
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Really don't know
      I never took it.. Still sitting on my medicine cabinet ..
       
    26. I who love music
      Cheerful

      I who love music Member

      Location:
      Michigan
      Tinnitus Since:
      mid seventies
      Because they can't fix it. Wait til they find a Tinnitus drug. I'm not crossing my fingers, it'll probably go something like this,
      "Tinnatrol must not be used by children under 12. Using Tinnatrol may lead to worsening of tinnitus symptoms and cause partial or total deafness. Do not use Tinnatrol if you are breastfeeding or play in a rock band. Reports of people dropping dead from Tinnatrol have been reported. Tell your doctor if you have a healthy heart, lungs, and liver becuase pretty soon you won't. Talk to your doctor and see if Tinnatrol is right for you."
       
      • Funny Funny x 3
    27. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      any updates on anyone taking neurotin? i took 100 mg. for a few days... then started taking 200 mg. 3 days ago this is my 4th day on 200 mg.. the first day my tinnitus was a 0-1 the second day i had a loud hissing all day and night so that was a bad day:( the third day started out kinda loud but went down to a 1-4 but not intrusive..so a pretty good day... i woke up today and its about a 2-3 right now... my tinnitus flucuates alot ....but we will see...
       
    28. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey @jeannie, sounds like you are having some response to the Neurontin. The 200 mg dose might be a little low -- although I think the lowest dose you can take and get results will be the best dose. But most important: sure do hope you are taking this under a qualified doctor's supervision. It's nothing to screw around with.
       
    29. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      hi LadyDi, yes im hoping it will work, im keeping it as low as i possibly can with results... and im perscribed this for fibromyalgia, actually wanted me to take 300 mg. 3x a day but i wont do it because of my ears, as ive heard this med. is toxic, so im really afraid of using it anyways..thanks so much!!
       
    30. suera

      suera Member

      Tinnitus Since:
      02/2010
      I have heard that this drug doesn't really work that well unless you do the 300mg 2 to 3 x a day. Of course it seems no two people ever get the same answer from the docs. I took this and it didn't help. I hope you continue to have low days, if your T flucuates a lot though, maybe it has nothing to do with the Neurontin.
       

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