Frustrated. I'm Going to Make Myself a Guinea Pig.

Discussion in 'Support' started by cjb2811, Sep 27, 2014.

tinnitus forum
    1. cjb2811
      No Mood

      cjb2811 Member

      Tinnitus Since:
      10/2008
      Cause of Tinnitus:
      Lamictal & Tegretol
      It has been a long time since I have posted on here or any other message boards (Daily Strength, Yuku, etc.) but I feel like I am reaching a breaking point.

      Long story short I have unilateral (left), constant, loud piercing tinnitus. I am 29 years old and it has a chokehold on my life. My tinnitus is not noise-induced but rather completely medication-induced. In October 2008, during the first major depressive episode of my life, a psychiatrist prescribed Wellbutrin, which took a very mild tinnitus to a moderate level. I was panicked and upset, but I eventually habituated and it was only a small factor in my life.

      Things took a drastic turn for the worse in November 2013, when after 4 more major depressive episodes (during which I refused medication because of the fear of worsening tinnitus) my therapist raised the possibility I was Bipolar II. I saw a new psychiatrist and she prescribed Lamictal. After only 13 days at 25mg, my tinnitus had skyrocketed. I am now aware of it at all waking hours, and am in a constant state of suffering. Over the course almost one year since the worsening there has been no change. I am in CBT for the tinnitus, but am not sure how much progress I am making.

      I really can't go on like this. I'm at my wit's end. I try to be engaged in life in order to get away from the suffering, but it follows me everywhere. Maybe it's that fact that I just want it to GO AWAY or go back to the pre-Lamictal level that it is hard to habituate, but all I know is that it is running and ruining my life.

      That said, and the fact that I don't see any improvement on the horizon, I am ready to start "experimenting" on myself with other psychiatric drugs. Perhaps I'm oversimplifying a complex situation, but it seems logical that if two different psychiatric drugs worsened my tinnitus, another could possibly improve it. I am well aware that such drugs could also make it worse, but I am suffering so much that it seems like a risk worth taking.

      Right now I am on Elavil and Xanax, neither of which effects the tinnitus level although Xanax helps my response to it and helps me actually get some sleep at night. I've tried the Gabapentin + Klonopin combo and also Pamelor, neither of which helped.

      My thoughts are going through the following - I believe my psychiatrist is willing to prescribe them - and hoping for the best:

      Seroquel
      Trileptal
      Tegretol
      Topamax
      Depakote

      Please share any thoughts or experiences you may have had with these drugs. I know that each drug can affect a person differently, i.e., one drug may help one person's tinnitus while worsening another's.

      My point here is that i feel I have no other options, and not much to lose. Sure, it could get worse, but I can't go on with how it is now.
       
      • Hug Hug x 5
    2. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Some here tried Potiga/Trobalt (an epilepsy drug) past weeks. It is in the Retigabine thread.
      Some have good results, some have bad side effects. But most seem to have some relief.
      Problem are the side effects and that you do not get the drug in all countries.
      There is a new drug (AUT00063) tested next month in, and only, the UK.
      We don't know if we will see results here, but we all hope.
      Regarding all the other drugs you mentioned, they do not give you a quieter T.
      As far as I know, they treat depression and anxiety, a common result of T.
      Some here take benzos (Xanax), but they are addictive.
      I myself take remeron against depression and as sleeping aid.
       
    3. cjb2811
      No Mood

      cjb2811 Member

      Tinnitus Since:
      10/2008
      Cause of Tinnitus:
      Lamictal & Tegretol
      Also possibly Lyrica. I welcome any other suggestions.

      Also, I am wondering if the right person to consult is a psychiatrist or a neurologist. I have a few things in my favor:

      - I have very good health insurance so I can see pretty much anyone, out of network, etc doesn't matter
      - My psychiatrist feels absolutely horrible about the effect of the Lamictal and she is more or less willing to prescribe anything that may help
      - I have a close friend who is completing his residency as a neurologist at a top hospital. I have not yet shared my condition and suffering with him but I plan to open up and get his take.

      Again, maybe I'm oversimplifying something, but if these drugs all hit the same pathways in the brain, and two of them worsened my tinnitus, I truly believe that there is one out there that could make it better. I don't care about the side effects of any changes I would have to make to my life.

      @Martin69 - I understand that on paper these drugs do not lower tinnitus, but they all affect individuals differently. Look at this article:
      http://www.ata.org/sites/ata.org/files/pdf/Letters_to_Editor_Lamictal_pulsatile_Lorazepam_Dec_07.pdf

      The drug that destroyed my life lowered this man's tinnitus. Thank for your the suggestion on the Trobalt. I will do some research.
       
    4. Ken219
      No Mood

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      'benzos (Xanax), but they are addictive.' Addictive? I'd say they help alter my T from a high to medium. Start off big then taper off to a low dose. Believe me once you find the right cocktail it helps living with 'T'. What I'm saying is try stuff and stay with what works for you.
       
      • Like Like x 3
    5. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      We all hope that AUT00063 will be effective. It is a potassium channel opener (don't ask me for details) developed specifically for T and hearing loss. We hope it calms down overactive neurons in the brain. Trobalt does it similar, but works on different potassium channels (not only the auditory context). AUT00063 was tested for T on rats with 100% success rate. Unfortunately none of the rats could speak telling the exact experience. :)
       
      • Funny Funny x 1
    6. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      I've tried Seroquel (just 1 25mg pill once).
      Didn't do jack for my tinnitus but that night I slept like a baby. It also made me feel kinda like being drunk.
      A very interesting drug, I usually have zero side effects from medication but Seroquel definitely is some strong shit.

      Also tried Lyrica. At 25mg, I think it just made my tinnitus a slight bit louder, nothing more.
      At 100mg, it made me feel a bit better but did nothing for the T. I used it for a week, won't bother with it again.

      Tegretol and Trileptal are basically the same thing, the latter is just newer with less side effects but both require regular blood work. They are risky.

      You may want to look into a combination of dimenhydinate and cinnarizine, these molecules affect the auditory and vestibular systems and could provide some relief.

      Topamax could be beneficial but it's not really recommended when there's some form of depression in the way.

      The only thing that works for me is Lexotanil (bromazepam). 3mg of it (equivalent to 0.25mg xanax) and I'm having a quiet day, unless I am going through a stressful situation.

      Take a look at the following list.
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136369/

      You might find something interesting.
       
      • Like Like x 1
    7. cjb2811
      No Mood

      cjb2811 Member

      Tinnitus Since:
      10/2008
      Cause of Tinnitus:
      Lamictal & Tegretol
      @undecided - This is valuable information. Thank you.

      What came first for you, depression or tinnitus? And were you taking these drugs to treat the depression, tinnitus, or both? Thanks again.
       
    8. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Tinnitus came first, before that I never had any issues with anxiety/depression.
      Prior to tinnitus, I was completely drug free.
       
    9. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      I don't know too much about those drugs other than Seroquel and Depakote.

      I wouldn't mess with Seroquel to be honest, unless you're looking to be sedated most of the time. There's also a study that came out recently attributing significant brain tissue atrophy from prolonged Seroquel use. Close friend of mine had some horrible experiences with Seroquel also.

      Depakote is pretty interesting, I remember I came across an article about it on reddit months ago that I was going to make a thread about here but never got around to it.

      Basically there was a study conducted that showed that it enhanced brain plasticity significantly, they got a group of non-musicians and split them into two groups: one on Depakote (sodium valporate) and the other on a placebo and had them train musical pitch. The group using sodium valporate were able to (a certain degree) achieve perfect pitch; that is that they were able to identify notes played to them without any other reference notes played before or after - this is fucking amazing. I've been studying music for years and I still suck at recognizing pitch when I have references available, let alone being able to recognize a pitch played by itself. Made me wonder what sort of results using sodium valporate alongside some sort of neuromodulation/sound therapy would result in.

      Anyway, I know you've made it clear that you feel this is what you need to do. But make sure you take every precaution available and take it all very, very slowly. Best of luck to you buddy.
       
    10. Asian

      Asian Member

      Tinnitus Since:
      4 weeks
      I am wondering why they haven't tested the autifony drug on humans yet. I mean what are they waiting for ?? Are the recruits on ? The process is so painfully slow it's frustrating! Seems the authorities don't want to get involved in this mess
       
    11. cjb2811
      No Mood

      cjb2811 Member

      Tinnitus Since:
      10/2008
      Cause of Tinnitus:
      Lamictal & Tegretol
      I just made an appointment with my psychiatrist for next week. I am going to do more research and lay out the proposal of Potiga, Depokote, or Trileptal. But will do lots of research over the next 9 days before my appt.

      I'm in the process of reading the very long Potiga thread on here and am cautiously optimistic. I really think it could help me.

      Today is another day of out of control volume and I'm really losing my focus at work. I'm in a constant state of anxiety and getting out of bed this morning was a battle. (I don't start work in the afternoon so I can sleep late, but it becomes a negative cycle of staying up late, sleeping late, and not getting anything done thanks to the anxiety the tinnitus suffering brings.)

      Like I said, I'm okay with making myself a guinea pig. And I already have blue eyes so the potential Potiga side effects don't worry me that much. ;)
       
      • Like Like x 1
    12. Floyd Mayweather
      Bored

      Floyd Mayweather Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Loud noise exposure or an ear infection, or maybe a combination :(
      Sorry to hear that. I really don't know much about any of those drugs but how about signing up for those AM-101 trails, cause they seem promising.
       
    13. rachelfaye

      rachelfaye Member

      Tinnitus Since:
      february 2014
      Just want to say good luck. I have been on Lamictal/welbutrin combo for 10 years - the lamictal, after decades of suffering severe episodes of depression and agitation changed my life. It wasn't until 10 years after starting it that I got tinnitus.

      I have also taken a very small dose of Xanax every evening to slow me down help ease into sleep with tinnitus and anxiety, but recently (after reading about benzos on this site) stopped taking that. A few nights of restlessness (almost no sleep) and now I'm normalizing. I don't think my brain knew how to get to sleep anymore or stay asleep.

      Happy with the change although I will use Xanax occasionally it if it seems necessary - it's a tool.

      So - no real NEW info here - but maybe just a different experience. So many options out there - as someone said - be careful.
       
    14. Georgia
      Thinking

      Georgia Member

      Tinnitus Since:
      11/2008
      Cause of Tinnitus:
      Unknown
      Hey firstly I am so sorry to hear about this my heart goes out to you.
      I don't know much about medication.
      But I know a lot about living a happy life with T and about coping.
      Honestly for T the best medication is nature, gives your mind focus in your surroundings. Menatl meditation is great to. I've used ibruprohen or paracetmol for T but they don't help. Herbalism and acupressure are things I've heard about.
      Its important to have clarity. Being relaxed encourages the brain to listen to more interesting sounds, helping you ignore your T. Keeping fit and healthy also does that. hearing aids could help, I have them (not specifically for T) my audiologist and hearing specialist told me it was a very effective way of blocking out T. Not sure if you could get them because I only have them because of hearing loss. But it's worth a look at :)
      I know this isn't exactly the answer you were looking for, but it's the way I cope and I'm really happy, I have bad moments but overall I'm good.

      Good luck! I hope everything turns out OK, I hope that there was something in these replies that helps you.

      :) stay strong
      There have even been some stories about people who've completely recovered.

      Check this out

      http://m.hear-it.org/Sleeping-with-tinnitus
      And this
      http://www.dailymail.co.uk/health/a...emailing-expert-3-000-miles-away-America.html
       
    15. Donsorel

      Donsorel Member

      Tinnitus Since:
      07/2008
      Hi,

      I just saw your post about Lamictal and I have exactly the same problem as you. I had tinnitus since 2008 after taking venlafaxine and I decided to find a med to stop tinnitus. A psychiatrist prescribed me Lamictal with Cymbalta. After 3 days of taking it the tinnitus increased, so I thought it was Cymbalta and I stopped it. The doctor insisted to keep on with Lamictal and I continued for about 10 days more, with tinnitus increasing. I stopped when tinnitus was extremly loud. Since then the T is extremly hard in some moments of the day. Now is very difficult to handle, stress make it terrible, now it's not just a noise, it makes difficult to think . I wonder if you found out what is the cause of this and if there is any med or treatment that calms it. How is your situation at this moment? Did it get better?
      I'm looking for docs to find an explanation and perhaps I try Trobalt, which I will receive by mail next week. I will keep you informed if i find anything

      Good luck
       

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