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Medical Forum / Diseases and Disorders / Tinnitus / May 2005Support
I am sorry "habituation" seems to annoy me, nearly as much as the T! It can be jolly aggravating to be constantly told on here that I *must* put up with something by pretending it isn't there, when it is, or somehow having to get used to the racket, when I don't want to get used to it. I want to get rid of it. However, I do acknowledge that some are helped by "habituating"- though Dog knows how! I am off to see a ENT consultant tomorrow, and see what he has to say. I just hope he isn't silly enough to mention "habituation" LOL! I do wonder if I have been clear enough in my posts recently, and maybe assuming many of you already know my situation. When I first got T in January 1991, I was scared, like everyone else, but I did get used to it, and pretty quickly too -in fact, I even impressed the audiology department! However, approximately 3 years ago I had ITE aids which aggravated my T to death, and I have had problems since then. I now have BTE aids which helped for a week, and the dreaded T "broke through" again! So, my main reason for asking for support on here was because I have been through "getting used to it", and then having it aggravated, and now finding it very difficult, to impossible, to bear it. So, how can I get used to it again? I am pretty sure if it was a constant noise every day, then I would soon get used to it, but to enjoy a quiet day on the odd occasion, and many variations, then back to hell, makes it extremely difficult to deal with. Ben <hoping for a miracle tomorrow, or a cyanide pill> > I do wonder if I have been clear enough in my posts recently, and maybe > assuming many of you already know my situation. When I first got T in [quoted text clipped - 9 lines] > but to enjoy a quiet day on the odd occasion, and many variations, then back > to hell, makes it extremely difficult to deal with. That sounds truly awful and frustrating. > Ben <hoping for a miracle tomorrow, or a cyanide pill> I hope you find what you're looking for. Susan Ben Since all those scientific, high-tech doctors have not helped you, you just have to try something different. That was what I did. If I had followed the habituation school here, I would have continued to live in a tormenting hell. The 'un-conventional' items includes: (1)Gingko biloba (2)acupuncture (3)Chiropractic treatment for your spine I went through it and found (2) works for me the most. I did, however, find the western medicine of betahistine to be a wonderful medicine. This medicine can be purchased OTC in HK. So why not talk to your doctor about taking ONE after dinner. A tablet of gingko in the morning and a tablet of betahistine after dinner did make a lot of difference for me. FP =============================== > I am sorry "habituation" seems to annoy me, nearly as much as the T! It can > be jolly aggravating to be constantly told on here that I *must* put up with [quoted text clipped - 20 lines] > > Ben <hoping for a miracle tomorrow, or a cyanide pill> > I am sorry "habituation" seems to annoy me, nearly as much as the T! It can > be jolly aggravating to be constantly told on here that I *must* put up with [quoted text clipped - 20 lines] > > Ben <hoping for a miracle tomorrow, or a cyanide pill> Ben: Try several things that have helped me: (i) two meds worth exploring are Klonopin and Neurontin; (ii) accupunture surely helped, as did a chinese herb available on the internet "Er Long Zuo Ci Wan"; finally order some pure oil of citron, available through e-bay, and using a q-tip, swab as deep in each ear as possible. You may be very surprized. Good luck Can you show us the link where you order the stuff? What is oil of citron? Thanks, FP Avoid Klonopin/Clonazepam/Rivotril - and any other benzodiazepine - like the plague. There is no clinical evidence that they help tinnitus, despite anecdotal reports that some people get relief from them (many people improve on placebos too). And there's lots of evidence that they can _cause_ tinnitus. Plus there's a strong statistical chance that you will have mild to severe withdrawal symptoms if you take them for more than a couple of weeks. > Ben: Try several things that have helped me: (i) two meds worth > exploring are Klonopin and Neurontin; (ii) accupunture surely helped, as > did a chinese herb available on the internet "Er Long Zuo Ci Wan"; > finally order some pure oil of citron, available through e-bay, and > using a q-tip, swab as deep in each ear as possible. You may be very > surprized. Good luck > Avoid Klonopin/Clonazepam/Rivotril - and any other benzodiazepine - like > the plague. > There is no clinical evidence that they help tinnitus, despite anecdotal > reports that some people get relief from them (many people improve on > placebos too). We've had long time posters here whose lives became more livable thanks to Xanax. And, no, people don't get well from placebos, the largest meta study to look at the question has shown. I would agree that benzodiazapenes should be one of the last things one tries, but if they work for you, they work, and no one cares about anything else at that point. And there's lots of evidence that they can _cause_ > tinnitus. We haven't heard that here, can you provide citations? Plus there's a strong statistical chance that you will have > mild to severe withdrawal symptoms if you take them for more than a > couple of weeks. Why would anyone with persistent, intrusive tinnitus ever stop taking them? For the record, I've used Xanax or Valium in the past for weeks with absolutely no habituation or withdrawal. We're talking about a steady, low dose, not drug abuse with increasing dosages. I think it's great when folks share their own experiences, but not so great when folks bark orders and instructions at others. Susan > x-no-archive: yes > [quoted text clipped - 11 lines] > tries, but if they work for you, they work, and no one cares about > anything else at that point. Yes, so true: apparently very few care (including physicians who absolutely _should_ know better) at that point. But believe me - I speak from personal experience - they will care later if they, like me, are among the 20% to 100% of benzo users who experience mild to severe withdrawal issues. See this article from Journal of Substance Abuse Treatment 1991, from the web site of Dr. Heather Ashton, the leading benzodiazepine withdrawal researcher and expert: http://www.benzo.org.uk/ashpws.htm > And there's lots of evidence that they can _cause_ > >> tinnitus. > > We haven't heard that here, can you provide citations? I've posted about this before, but here are a few citations: League for the Hard of Hearing - http://www.lhh.org/otology/ototoxic.htm New England Journal of Medicine - http://www.benzo.org.uk/busto.htm From Dr. Ashton on side-effects: http://www.benzo.org.uk/sidefx.htm The Pharmacists' Guide to Assisting Patients with Insomnia: http://www.continuingeducation.com/pharmacy/insomnia/hypnotics.html The FAQ for this newsgroup gets a little bit into benzos as a treatment for T, says that long-term used is not recommended and that "Patients who elect to continue taking the drug are prescribed it for a maximum of 4 months." (This is incorrect, as millions of people worldwide are put on benzos for many many years, even for life, contrary to prescribing guidelines). The FAQ does not get into benzo withdrawal issues or benzo side-effects, at least that I can see. http://www.faqs.org/faqs/medicine/tinnitus-faq/ There are many more citations; this is just a sampling. I myself first experienced T during a time when I was initially decreasing the amount of Klonopin/Clonazepam/Rivotril I was taking. But at that time I had no idea the drug itself, or withdrawal from it, could be involved in the T, or even that withdrawal was an issue. Neither apparently did my doctor who prescribed it or my ENT, both of whom I asked. Live and learn. > Plus there's a strong statistical chance that you will have > >> mild to severe withdrawal symptoms if you take them for more than a >> couple of weeks. > > Why would anyone with persistent, intrusive tinnitus ever stop taking them? Because of the clinically documented side-effects and mild to severe problems associated with withdrawal (commonly called "discontinuation"). But of course it's a personal choice. Now at least this information is beginning to get out to T-sufferers. Better to be forewarned of the pros and cons in order to make an informed choice. I myself am down to a very small amount of Clonazepam and am continuing to discontinue/withdraw gradually. And amazingly enough, feeling way better than I did on much greater amount, even though I was told I'd have to be on it "for life"! My T is a bit worse now than before but thankfully not horrible. > For the record, I've used Xanax or Valium in the past for weeks with > absolutely no habituation or withdrawal. We're talking about a steady, > low dose, not drug abuse with increasing dosages. That's excellent news, Susan, and I'm very glad that's been your experience. But many others have a very different and extremely unpleasant time of it - even after taking a benzo for only a few weeks. > I think it's great when folks share their own experiences, but not so > great when folks bark orders and instructions at others. It wasn't my intention to bark orders, Susan. I'm sorry if that's how it came across and I do apologize. I have strong feelings about this issue based on my personal experience, the experience of others I have talked to, my self-education about it, and discussion with doctors and addictions doctors and therapists who work with benzodiazepine-sufferers. I also know how shocking it is and how unwelcome this information is when you first learn that the very medicine you're taking by prescription from your trusted doctor to help you with serious problems can cause other serious or even worse problems. And that no one told you there are serious risks as well as benefits. You also don't have to take my word for any of this or even the clinical evidence. You could join one of the many Internet forums that benzo-sufferers participate in, such as the "benzos" group on Yahoo. That alone is a revelation. > Susan > Yes, so true: apparently very few care (including physicians who > absolutely _should_ know better) at that point. But believe me - I speak [quoted text clipped - 4 lines] > benzodiazepine withdrawal researcher and expert: > http://www.benzo.org.uk/ashpws.htm I completely understand that habituation and withdrawal issues can occur, but can also be dealt with via very gradual tapering off the drug. Sudden discontinuation could be hellish. My thought is that only those who've tried everything, and, as Paul said, are unable to habituate their T and may be suicidal, should use it. Benzos are also used routinely, in small doses and with great success in the treatment of balance disorders. The fact that some drugs have a small % of risk for T is something we all have to consider; I had to weigh it recently in choosing an antibiotic for a sinus infection. >> And there's lots of evidence that they can _cause_ >> >>> tinnitus. But not in most users. >> We haven't heard that here, can you provide citations? > [quoted text clipped - 14 lines] > issues or benzo side-effects, at least that I can see. > http://www.faqs.org/faqs/medicine/tinnitus-faq/ No one posts the FAQ anymore, and as you point out, that information is clearly outdated. Two longtime posters who rarely post here any more have been on Xanax (and are very grateful for it!) for years and expect to stay on it. Thank you for all the citations. > There are many more citations; this is just a sampling. > [quoted text clipped - 4 lines] > apparently did my doctor who prescribed it or my ENT, both of whom I > asked. Live and learn. That's pretty unbelievable. I mean, any time you're reducing a drug that quiets nerve response, you'd have to connect the dots? I think public knowledge about addictive properties of these drugs has been very broad in the U.S. for decades. They're all controlled substances! >> Plus there's a strong statistical chance that you will have >> >>> mild to severe withdrawal symptoms if you take them for more than a >>> couple of weeks. You know, I worked with the mentally ill for many years, many of whom took these drugs, were switched to others after titration and I don't recall a single one, out of hundreds, who had withdrawal problems. I know it can happen, and certainly after long time use, or with increasing abuse, just haven't seen it nor experienced it. Nor has my sister, who used it for months along with NSAIDS prior to back surgery. > Because of the clinically documented side-effects and mild to severe > problems associated with withdrawal (commonly called "discontinuation"). Why would someone who can't live with their T ever discontinue the drug? Taking a very small dose twice daily for years isn't hurting those I know, just helping. No drug is without risk, one has to weigh it against the benefit. > But of course it's a personal choice. Now at least this information is > beginning to get out to T-sufferers. Better to be forewarned of the pros [quoted text clipped - 3 lines] > greater amount, even though I was told I'd have to be on it "for life"! > My T is a bit worse now than before but thankfully not horrible. Glad it's going so well for you. If you've seen doctors unaware that these controlled substances are controlled for a reason, I can really understand why you think the info isn't out there, but I believe it's pretty widely known. > That's excellent news, Susan, and I'm very glad that's been your > experience. But many others have a very different and extremely > unpleasant time of it - even after taking a benzo for only a few weeks. I'm sure that's true, but as I mention above, I haven't seen that to be a significant percentage of users, personally or professionally, but the risk you point out is always there. > It wasn't my intention to bark orders, Susan. I'm sorry if that's how it > came across and I do apologize. I have strong feelings about this issue > based on my personal experience, the experience of others I have talked > to, my self-education about it, and discussion with doctors and > addictions doctors and therapists who work with benzodiazepine-sufferers. And it's good information; but T sufferers who can't find any other relief who are preoccupied with their T and with escape don't become addicts, they become appropriately medicated users of a clinically valuable treatment. > I also know how shocking it is and how unwelcome this information is > when you first learn that the very medicine you're taking by > prescription from your trusted doctor to help you with serious problems > can cause other serious or even worse problems. And that no one told you > there are serious risks as well as benefits. Yeah, I've had that experience with a lot of treatments in the past, so I never take anything or agree to any procedure without thorougly researching it on my own first. I never break this rule, even with doctors I like and trust. > You also don't have to take my word for any of this or even the clinical > evidence. You could join one of the many Internet forums that > benzo-sufferers participate in, such as the "benzos" group on Yahoo. > That alone is a revelation. Not to me; the addiction issue doesn't apply when the indication for the drug continues, just when it ends but the desire for the drug doesn't and dependency remains. Susan > I completely understand that habituation and withdrawal issues can > occur, but can also be dealt with via very gradual tapering off the drug. I guess you'd have to ask those who have tapered gradually how they feel about it. But yes, gradual tapering generally seems to work. From my perspective as one who's going through it, it's not as easy as it sounds. When I started not to recognize my own handwriting and not to know whether to proceed through an intersection on a green light, I knew something weird was happening. > Sudden discontinuation could be hellish. Not only hellish, but can cause seizures, psychotic reactions and acute anxiety states among other hideous things. >>> And there's lots of evidence that they can _cause_ >>> >>>> tinnitus. > > But not in most users. Regardless, it's a risk that those with T should be informed of - in advance. > No one posts the FAQ anymore, and as you point out, that information is > clearly outdated. Two longtime posters who rarely post here any more > have been on Xanax (and are very grateful for it!) for years and expect > to stay on it. I don't know how usenet FAQs work, but if it's out of date and erroneous, shouldn't it be taken down until it's updated, or the out-of-date and incorrect sections either deleted or flagged as such? > Thank you for all the citations. You are most welcome. >>> Plus there's a strong statistical chance that you will have >>> [quoted text clipped - 7 lines] > increasing abuse, just haven't seen it nor experienced it. Nor has my > sister, who used it for months along with NSAIDS prior to back surgery. It sounds like your patients were very fortunate. I on the other hand have talked to doctors, an addictions doctor, an addictions psychologist, two addictions researchers/experts etc. and they all are aware of benzo side-effects and withdrawal issues, and have experience dealing with them. Titration and switching to, e.g., Valium is certainly very helpful for many. The tricky part about benzos is that people (like me) sometimes have no idea the "weird things" that are happening to them (anything from muscle twitches to increased insomnia/anxiety/panic attacks to blurred vision to worse tinnitus to memory loss - the list goes on and on) are actually benzo side-effects and/or withdrawal symptoms. Not the other way around. Withdrawal can also take place "inter-dose" as people become tolerant of their dosage level and actually need more benzo in their system to keep the inter-dose symptoms/effects from happening. So the doctor prescribes more and on it goes. > Why would someone who can't live with their T ever discontinue the drug? Again, for all of the above and below reasons: because benzos are powerful psychiatric drugs with many side-effects and a risk of mild to severe withdrawal symptoms which are sometimes irreversible, and because they are only clinically tested and approved to be taken for extremely short periods (weeks) - not for months, years or life. Unless it's a matter of life or death, in which case the benefits obviously outweigh the risks. > Taking a very small dose twice daily for years isn't hurting those I > know, just helping. There are countless stories, some in books, about people who just took a small dose for a short time, and still ended up in "benzo hell." That's the whole point: the misconceptions about these very powerful psychiatric, mind-altering drugs are widespread. > No drug is without risk, one has to weigh it against the benefit. Agreed completely. >> But of course it's a personal choice. Now at least this information is >> beginning to get out to T-sufferers. Better to be forewarned of the [quoted text clipped - 9 lines] > understand why you think the info isn't out there, but I believe it's > pretty widely known. Who knows if the doctors I saw were unaware (hard to believe) or just didn't want to get into it (easier to believe - they don't have time to get into long explanations of all the permutations and risks, and definitely don't want to deal with seemingly crazy people repeatedly showing up in their office or in emergency with bizarre symptoms that are obviously benzo-related). That's a huge issue - how to get physicians dealing with this in a different way. Unfortunately the reality of prescribing practices, at least hear in British Columbia, is that benzo prescriptions are not only on the increase per capita, they are often inappropriately prescribed. It is not legally required in Canada that people be provided with comprehensive information about the possible harmful effects of any drug they are prescribed. The big pharmaceutical companies ensure that pharmacists are very, very cautious about the information they put in writing to patients by way of warnings. Also, the doctor may not be aware of all the problems associated with psychiatric drugs, including dependency and withdrawal. > And it's good information; but T sufferers who can't find any other > relief who are preoccupied with their T and with escape don't become > addicts, they become appropriately medicated users of a clinically > valuable treatment. The key words above are "appropriately medicated." Therein lies the rub. >> You also don't have to take my word for any of this or even the >> clinical evidence. You could join one of the many Internet forums that [quoted text clipped - 6 lines] > > Susan There are a couple of assumptions here: one is that benzo users continue to "desire" to take the drug when their medical issue resolves - many benzo users are _desperate_ to stop using them and have no desire or craving whatsoever to keep taking them, unlike other addictions such as alcohol, heroin, crystal meth, etc. They do have the dependency, though, as you say. So if they have worse panic attacks or severe insomnia, naturally they don't want to stop taking the very medication that's supposed to be helping them with it. The other assumption is about the "indication" continuing - this assumes that the indication was an appropriate one, namely, severe insomnia, severe anxiety or psychotic states, epilepsy or drug-induced convulsions, premedication anaesthetic before surgery, muscle spasms or involuntary movement disorders, and agitation due to psychiatric disorders. The actual "indication" that the doctor prescribes for may have been something different: coping with mild grief or stress, adjusting to childbirth or menopause, a couple of sleepless nights, a bad day at the office, etc. Anyway, it's been an interesting discussion and I've learned a lot. Thanks, Susan. Best regards. > Anyway, it's been an interesting discussion and I've learned a lot. > Thanks, Susan. Best regards. Same to you, it has been interesting. I agree that all medical consumers must be informed before undertaking any treatment. Susan > We've had long time posters here whose lives became more livable thanks > to Xanax. And, no, people don't get well from placebos, the largest > meta study to look at the question has shown. > I would agree that benzodiazapenes should be one of the last things one > tries, but if they work for you, they work, and no one cares about > anything else at that point. For me, Xanax was a great stepping stone into habituation. It allowed me to experience tinnitus in a detached manner. My ears were still ringing, but because of the drug it didn't bother me. It's been weeks since I last took a Xanax. I no longer need it, because I'm no longer trying to get away from my T. There's no more "oh god make it stop!" It's simply a part of my environment now. Brian > Avoid Klonopin/Clonazepam/Rivotril - and any other benzodiazepine - like > the plague. > There is no clinical evidence that they help tinnitus, despite anecdotal > reports that some people get relief from them (many people improve on > placebos too). And there's lots of evidence that they can _cause_ > tinnitus. Well, I'd avoid suicide like the plague. When suicide occupies one's thoughts, these drugs are reasonable considerations. There ARE clinical studies documenting that benzos can reduce tinnitus (refer to ATA site, Medline, etc.). The side effect of tinnitus from benzos is around 5%., but its irrelevent if your're taking them for tinnitus. Getting off these drugs can challenge some, I suppose. But they are so well studied that withdrawal protocols must be easy to find. Better than suicidal thoughts any day of the year. PaulS The trouble with all that psychology stuff is the victim can never see the other side of the fence until they jump over it. You have to see your doctor or shrink and discuss these things with him/her and then try a medication. When it works you will wonder why you didn't do it years ago. IF you had a severe headache would you not take an ASA tablet or equivalent? > > Avoid Klonopin/Clonazepam/Rivotril - and any other benzodiazepine - like > > the plague. [quoted text clipped - 15 lines] > > PaulS "Larry Lix" <LarryLix@yahoo.com> wrote in message > You have to see your doctor or shrink and discuss these things with > him/her > and then try a medication. Good point. I agree - it was my oversight to suggest that one try the drug w/o some professional guidance. Thanks for adding it to the discussion. PaulS Please let us know what he has to say. I hope he has some answers for you. Best of Luck, athena I am off to see a ENT consultant tomorrow, and see > what he has to say. I just hope he isn't silly enough to mention > "habituation" LOL! "I am sorry "habituation" seems to annoy me, nearly as much as the T! It can be jolly aggravating to be constantly told on here that I *must* put up with something by pretending it isn't there, when it is, or somehow having to get used to the racket, when I don't want to get used to it. I want to get rid of it. However, I do acknowledge that some are helped by "habituating"- though Dog knows how! I am off to see a ENT consultant tomorrow, and see what he has to say. I just hope he isn't silly enough to mention "habituation" LOL!" ----- Well, when it comes to T, one is either a habituater or a fighter. When my T began, I started out as a fighter frantically seeking the closest thing to a cure that I could find. Fortunately for me personally, I read about and did some research regarding the Jastreboff method early on, and let myself accept the concept. (However, the whole deal with counseling sessions and wearing hearing-aid/maskers is unnecessary in my opinion.) The concept of habituation is quite simple, and you either except it or you don't. Let me give an example based on my personal point of view; I live in a desert environment, which is windy all the time. I live for going on long daily walks, and usually the wind is roaring in my ears the whole time. As a matter of fact, I realized early on when my T first manifested itself, that the roaring of the wind drowned out the T. And I thought to myself; the sound of the wind roaring in my ears is louder than the T, so why is it that I've never been bothered by it? The answer is, that I never regarded the roaring in my ears caused by the wind to be an intrusion, it was just simply there. Now I take that attitude with my T, it's simply there. It's no longer something I feel that I need to get away from or make better. My T does still start to trigger that sense of aggravation or even a brief surge of anxiety now and then. But then I remember that the process of habituation is supposed to take up to a year or more, and I've got a ways to go yet. Considering the progress I've allowed myself to make so far, I can rest assured that a year after I first contracted it, my T is no longer going to have any bearing on my life what so ever, anymore than the roaring of the wind in my ears ever has. Good luck with all those extracts, drugs and needles... ...[clipped]... > Well, when it comes to T, one is either a habituater or a fighter. > When my T began, I started out as a fighter frantically seeking the [quoted text clipped - 26 lines] > > Good luck with all those extracts, drugs and needles... I have hung around this ng for years and have been helped by many comments, rarely having a comment which I thought might help others. But Brian's approach to living with T is very close to mine and I wish to reinforce his experience. I live in the tropics, and go for walks in areas of deep vegitation. The background sounds surrounding me there are uncannily similar to my T-generated 'crickets,' and blend in with the sounds I carry around with me all the time - to the extent that, when I am there, I can't separate the one from the other. Now, I would like to point out that these background sounds of nature (flora, fauna and atmosphere), are present at all times, and those who live out in these areas, even possessed with perfect hearing, hear what I hear all the time; for them, it's unremarkable, normal, and has no inhibiting affect on their lives. So, like Brian, I decided to change my attitude, treat my personal sounds as those sounds of nature, and to accept them as natural background noise. This approach has permitted me to short-circuit that reaction I used to have about my personal sounds: agitation, attempted resistance to unwelcome intrusion, frustration at the inability to reject and eliminate the distraction, and ultimately ending up depressed and feeling sorry for myself. Now that I am writing about this, my 'crickets' are singing to me, and I am accepting those little guys as not about to leave my space for the foreseeable future, and am at peace with it. I hope this can be of some use to the group. Best regards...
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