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Tinnitus therapy (MBCT) update No. 1 
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| Hello all It's been two weeks since I started Mindfulness Based Cognitive Therapy, which is the tinnitus therapy provided by the Royal National ENT Hospital, London. I thought I'd post short, bullet point updates, so that it's easier to chart progress. Background: I've had T for 10 months from inner ear decompression while scuba diving. Take 75mg Amitriptyline for T-induced insomnia Current regime: 2 x 20 minute meditations per pay. Am also using free MBCT podcasts available from iTunes. Also practicing being mindful during the day T volume: No change. My T remains highly variable, but when I listen out for it the volume and pitch are unchanged. T intrusiveness during day: Improved quite a bit. I had already started to habituate naturally before staring MBCT, but over the past two weeks I have observed a positive change in: a) the frequency of T 'episodes' is somewhat improved b) the emotions I exhibit towards are more than somewhat improved. T intrusiveness during night: Unchanged. Still taking 75mg Amitriptyline every night but plan to taper now that I am doing MBCT. Other changes: MBCT has literally cured 100% the dermatophagia/obsessive skin biting (OCD spectrum) I have battled everyday for 37 years. This outcome has been shocking as I thought I would have this for life. Major improvement in mood, awareness and enjoyment levels of everyday tasks both as a result of fixing my dermatophagia and in general. Difficulty in complying with regime. Meditation: Mostly easy to accommodate but requires giving up other activities (gym). Mindefulness: Very difficult to practice 24/7. Requires lots of effort at this stage. Summary: Quite dramatic changes in a very short space of time. To be clear my T volume/pitch is not changed. The benefits so far are ones I was not expecting. Background on MBCT: http://www.rnid.org.uk/community/forums ... _hospital/ (external link, opens new browser window) | Jason | 07 Apr 2009 13:05 |
| Fascinating, Jason. How long have you been on the Amitriptyline now? As the medication seems to agree with you I can't help wondering if it might be behind your improvement in your mood? | Movie Miscreant | 07 Apr 2009 14:29 |
| 75mg Amitryptiline is a low-level anti-depressant dose as opposed to 10-25mg more typically used for insomnia/muscle relaxant. Good luck with the tapering. Thanks for post re MBCT. | foggie | 07 Apr 2009 15:27 |
| The typical daily adult dosage for Amitriptyline used as an antidepressant ranges between 25mg to 150mg, so 75mg is really an “average” antidepressant dose. Concerning dosages – especially of antidepressants – EVERYONE’S DIFFERENT and 75mg might suit one person’s needs but not the next person’s. | Movie Miscreant | 07 Apr 2009 16:26 |
| Woops, remove the word "typical" from my above post and it makes sense. RNID, please can we have an edit function? | Movie Miscreant | 07 Apr 2009 16:38 |
| RE; amitryptiline I has a conversation with my GP about this drug. She originally recommended it to me and I said I would think about it. In the meantime she came back to me to let me know that another of her patients who didn't have tinnitus before now has this as a side effect of this drug and has had to scale back the dosage. She has written to the company and now has recommended prozac to me (haven't looked yet to see if there are side effects of tinnitus to this) Obviously people like yourself Jason don't find this an issue and can get relief from this. | Mary M | 07 Apr 2009 16:59 |
| Hi all. Re questions: 1) Have been on amitrip for 9 months already. I developed very severe insomnia with my T. I was referred to an NHS sleep consultant at St Thomas' and Ami. was one of the few considered safe for long-term use (apart from Mirtazapine which I hated because of the carb-craving/weight-gain thang.). Consequently, the improvement in mood is in addition to any benefits from Ami. 2) Amitrip is definitely ototoxic for many users (makes tinnitus worse). I have reported on here how Ami. sends my best mate's T through the roof (it's because Ami dehydrates the body - it's actually prescribed for teenage bed-wetting). Fortunately, I'm in the group of people for whom Ami. is not ototoxic. I drink about 3-4 litres of water a day; which may or may not be relevant. Anyway, am posting this from my iPhone. Sorry if it's a bit messy. Jason | Jason | 07 Apr 2009 18:15 |
| Hi. I meant to say: I BELIEVE Ami is ototoxic for many users because it dehydrates the body. That's my own personal hunch. As ever, there is no known medical reason why Ami is theraputic for some T sufferers and ototoxic for others. | Jason | 07 Apr 2009 18:25 |
| Hi. I meant to say: I BELIEVE Ami is ototoxic for many users because it dehydrates the body. That's my own personal hunch. As ever, there is no known medical reason why Ami is theraputic for some T sufferers and ototoxic for others. | Jason | 07 Apr 2009 18:34 |
| Hi. I meant to say: I BELIEVE Ami is ototoxic for many users because it dehydrates the body. That's my own personal hunch. As ever, there is no known medical reason why Ami is theraputic for some T sufferers and ototoxic for others. | Jason | 07 Apr 2009 18:35 |
| Hi Jason I'm not sure the adverse reaction of tinnitus sufferers towards Amitrip is down to ototoxocity. It's more likely down to the brain's changes with the medication. | Movie Miscreant | 08 Apr 2009 07:29 |
| Jason, glad things are going well. Kabat-Zinn's book 'Full Catastrophe Living' mentions someone with insomnia whose sleep patterns improved after the 8 week course. | Urusai | 08 Apr 2009 08:54 |
| Jason, could you say a little more about how Mindfulness practice has improved your dermatophagia? Is it that you have become mindfully aware at the point where you are about to bite and then stop? The reason I'm asking is because someone I know has a teenage son who suffers from trichotilomania (obsessive hair pulling) and I was thinking of recommending MBCT to his mum. | Urusai | 08 Apr 2009 08:59 |
| Hi Urasai - the dermatophagia thing was a completely unexpected side effect. In terms of how it's working I would say 80% of the benefit is as a result of the compulsion disappearing (strange, I can't explain why) and 20% is being mindful just before the act. I've posted this phenomenon on the on trich/derm forums to see if anyone else has experienced this. Reading the posts on these sites, people describe falling into a trance like state when pulling/biting/picking. Of course this is the very state of mind that mindfulness attempts to change. Hope that helps. MM - agree Ami effect likely caused changes in brain activity by this TCA. However, there was a paper published by Journal of Psychopharmacology very recently where they have reviewed rarer incidences of ami-induced ototoxicity: Journal of Psychopharmacology The incidence of amitriptyline- induced ototoxicity is less well recognised. http://jop.sagepub.com/cgi/content/abstract/22/5/574 (external link, opens new browser window) An unusual case of prolonged tinnitus following low-dose amitriptyline D. Mendis Department of ENT Surgery, Queen's Hospital, Burton-on-Trent, UK, dulanimendis@yahoo.com M. Johnston Department of ENT Surgery, Derby Royal Infirmary NHS Foundation Trust, Derby, UK We report on a case of unilateral tinnitus after a short course of low-dose amitriptyline for neuralgic foot pain. This has been described in the literature previously at much higher doses and is associated with prolonged administration; we present our case with a review of the current literature in-order to raise awareness of this possible complication of anti-depressant therapy. We also propose a novel hypothesis for the pharmacological basis of amitriptyline-induced tinnitus. Key Words: amitriptyline • ototoxicity • tinnitus | Jason | 08 Apr 2009 10:38 |
| Hi I am interested in any info or experience on Amitriptyline, as although Mirtazapine does make me sleep well and makes my tinnitus less audible, I permanently feel "away with the fairies" and don't like the hunger/weight gain associated with it. Ideally, I want a harmless drug that can make you sleep, long-term....What is everyone else taking for sleep? | Violetdusk | 08 Apr 2009 13:01 |
| Hi Violetdusk You know, Amitriptyline is one of those that keeps coming up on this board and people are really polorized, both in their clinical response and their opinions of the drug. For me it works excellently. Neither my GP nor my Sleep consultant at St Thomas' were prepared to consider habit-forming pills for more than 28 days, so the options available to me were Mirtazapine, Amitriptyline or sedating antihistamines. I put on so much weight with Mirtazapine that I had to have a Reductil/Subutramine (weight loss drug) on top, which for me was crazy. Fortunately Amitrip works for me. I have been on it nine months. I usually take 75mg at 9pm. At 11pm I go to bed and by 11.30 I am asleep. I wake between 6am and 7am refreshed with little hangover (it was awful at first), with maybe one or two night time interruptions. The side effects - dehydration - I have learned to work around. Both the Sleep consulant, my GP and ENT agree I can stay on it for life with no health consequences but they are confident - as am I - that I will come off it by following tinnitus therapy. Indeed I am already tapering. There are others also this boards who are able to tolerate Amitriptyline and its use (as well as that of Nortriptyline) have been clinically trialled with positive results. http://www.ncbi.nlm.nih.gov/pubmed/11771024 (external link, opens new browser window) HOWEVER, for lots of people with tinnitus, Amitriptyline is about the worst drug they can take. When my best friend tried it he went into a tinnitus spike that knocked him out for days. There are plenty on this board that have had the same reaction. Because of these binary responses (good or awful) I believe many are reluctant to try the drug and many GPs who have heard the terrible stories are reluctant to prescribe it - which is all fair enough. The only question remains; if you can't tolerate Mirtaz or Amitrip then what options are open to you, which I guess is where you are Violetdusk. And I don't know what the answer is. Possibly you could harass you GP about other antidepressants that have a sedative effect at specific dosages. Finally, I should say that in investigating the full range of sedatives my consultant tried promethazine hydrochloride, Diphenhydramine Hydrochloride and other sedating antihistamines. These kind of worked for me but the hangover was horrendous and I also ended up with Restless Leg Syndrome, which was a price I wasn't prepared to pay. You might react differently however. Good luck. Jason | Jason | 08 Apr 2009 17:54 |
| antrip did me no good at all. Took me hours to go to sleep but seemed to kick in next day when it gave me a hangover effect. | katarina | 08 Apr 2009 22:28 |
| Hi sorry to hear that Katarina. Yours is another good example of how Ami works very differently for different people. It is worth noting that Ami does take a while to kick-in (2 - 3 hours before bed). Tinhead is another person who has had excellent results from Ami - you can read his experience in MM's new thread on TRT. | Jason | 09 Apr 2009 00:44 |
| Violetdusk Just to say...whatever you decide be careful about coming off Mirtazapine quickly. I consider myself as someone who can cope easily with different drug regimes. However, when I came off Mirt. without long tapering I went completely bonkers; and I do mean like a crazy person living on the street Please be super-careful in exit-ing this drug. Bests - Jason | Jason | 09 Apr 2009 19:26 |
| I am so glad that I found this message thread, after searching the internet a very long time. I have been practicing mindfulness meditation for two months now and I have tinnitus. Am retirement age, in good health, but have had high pitch ringing for decades, due to being an audio recording engineer in my youth, subjected to loud music. Annoyance has gotten progressively worse in last few years. Medical ENT checkups show no physical problems, essentially normal hearing acuity and they have no recommended treatment. I took a transcendental meditation course 30 years ago for stress reduction, and have been practicing it intermittently over the years. A few months ago I learned about mindfulness, read many books, used guided meditation CD's, etc. My purpose was for a social phobia problem rather than tinnitus. In the past few days, I read brief articles (no details) about mindfulness being used in the UK to treat tinnitus. So, it appears that you have the details and I have the need to know. Although ringing is always there, most of the time I cope with it but while meditating (quiet and relaxed) it dominates and makes it difficult to concentrate on other things. If I focus on the ringing, it becomes really loud and is very hard to then move concentration on to something else like the breath or body scan. So, based on the fact that I already know how to meditate, what are the techniques and practices specific to tinnitus? Would it be possible for me to get say a class workbook or a CD? Downloading would be preferred over mail because I live in the USA. Will really appreciate your comments and help. Barry | 17 Jun 2010 15:42 | |
| Barry, try here there are tinnitus meditate exercises you can download: http://www.tinnituseprogramme.org/ (external link, opens new browser window) | 17 Jun 2010 15:51 | |
| Yes, I thoroughly agree with the MCBT approach. My understanding about the approach to meditation and MCBT is that during meditation, focussing on the tinnitus, or whatever the condition you are learning to manage, you are allowing the feelings to surface and be experienced fully and consciously. The principle being that when in 'normal' activity you experience the anxiety associated with tinnitus your level of panic is reduced in that you have experienced the feelings already in a controlled setting. Therefore the levels of alarm are reduced and the vicious cycle associated with the stress restrained. It has been very useful to read this strand. It has prompted me to return the strategies I have started with more conviction. I would also highly recommend Elizabeth Wilde McCormick's book which is specifically a self-help guide. She is one of the initiators of this technique in this country. | 19 Jun 2010 21:14 | |
| Matthieu Ricard's books 'Happiness' and 'The Art of Meditation' are also titles I would recommend. The latter book has a technique for dealing with the tidal wave of emotions that engulf us when a condition like tinnitus emerges. When I wake up in the morning my tinnitus is off the scale in terms of volume and so I am using this method to get through this difficult start to the day. | Urusai | 20 Jun 2010 07:35 |
| Jason do you still post updates on this Mindful Meditation treatment and how you are doing? Does anyone know how Jason got on with this if he no longer posts? There was a recent article on this in the Daily Mail recently and my GP has referred me to Grays Inn Road and awaiting an appointment. It will likely take months so was just wondering about anyone on this forums experience. Thanks, Mary | Mary | 21 Jun 2010 00:46 |
| Thank you for the references: E-Programme site has a lot of info on it. I will fill out their form to get the course literature. I will look up Elizabeth Wilde McCormick's book and Matthieu Ricard's books on amazon.com. I must be lucky because so far there have not been emotions, anxiety, etc. caused by my tinnitus. As I said, it is always there (although intensity varies), has grown louder over the years and it does grab attention during meditation. I started meditating to address social anxiety issues, but if I can relieve tinnitus as well, then all to the better. Here are links to two Sanjay Agrawal's interesting postings: http://success-nirvana.blogspot.com/200 ... brain.html (external link, opens new browser window) and http://success-nirvana.blogspot.com/200 ... r-you.html (external link, opens new browser window) The 2nd posting references work at University Hospital Of Wales, Cardiff. The Cardiff work is what I saw as an abstract many times on the web, but no details. To get details requires paying a copying company $60 to $80. Any shortcut to avoiding these large fees? The UK seems to be way ahead in clinical trials and insurance coverage, in applying mindfulness meditation to tinnitus. A lot is being done here in the USA on stress, anxiety, depression and chronic pain, but nothing I know of for tinnitus. Barry | BarryK | 21 Jun 2010 22:42 |
| Hi Mary, Barry and others interested in MBCT Sorry I didn't reply to your message sooner. I haven't visited or posted to this site for over a year. I was doing some research on MBCT for a friend who has a stammer and Google threw up a link to my old post here so I thought I'd drop by. It's great to read, Mary, that you have an appointment for MBCT at Gray's Inn Road. Have you had any sessions yet? The reason that I haven't posted for so long is quite simply that I no longer have a Tinnitus problem. Let me qualify what that means: I have not been physically cured. As I sit here typing and contemplating my T for the first time in a year it is just as loud as it ever was. (I developed T from a scuba accident). However, MBCT has been so successful for me that T has no impact whatsoever on my life. I don't notice it for weeks on end and when I do notice it my brain's response is now completely neutral and so it quickly ignores the T. For those who are reading this thread for the first time, let me say that MBCT is not new-age hippy-dom, nor is it trying to force a happy, smiling face onto an horrendous situation (my T was acute, it was accompanied by high-frequency hearing loss and led to chronic insomnia). MBCT is practical. As I have understood it, MBCT trains your brain to develop a neutral response to the actual noise and stop obsessive or negative thinking about T. When these conditions are met, the brain (or my brain at least) stops noticing the T. I should say that I know I have experienced a better than average outcome. I'm sure others' responses will vary. In fact, I only ever needed two sessions at the Gray's Inn Road. It happened that quickly for me. It was like a light switch. But my response is not typical and it was explained it could take up to a year of monthly sessions. And its hard work too - especially to begin with. You have to put in the meditation time (2x 20mins everyday to start with) and you have to practice mindfulness 24/7. It's a bit like the gym. If you want results you have to work at it. If you stop working, then so do the results. MBCT is not for those seeking a once-off cure. On a practical note; the treatment (which takes the form of one-to-one sessions with a hearing therapist) is free on the NHS. You need a GP referral obviously. I don't know if hospitals other than the Royal ENT now offer this. BarryK - don't pay for those abstracts just yet. Besides I suspect they will be academic papers arguing the case for MBCT in the NHS rather than providing info on how to use the technique. Instead, I will dig out the literature I was given by the NHS on using MBCT for tinnitus. I notice that the RNID have still not upgraded this board to manage even the most basic, basic community functions so I'll have to email it or you can propose somewhere it can be posted for the wider group. In the meantime, Barry, can I also recommend a free podcast on iTunes. It's by Lisa Dale Miller and it's called "Mindfulness of Breath Meditation for Beginners". With the approval of my hearing therapist I used to use this particular podcast as part of my therapy. It's a good one as during the meditation it suggests that you listen out for other sounds in your body. At which point I would focus on my T. I can tell you....when you have been listening to your T in a structured, non-judgemental way for 2 x 20mins every single day during meditation, the brain gets so bored of listening to T its really hard to keep your focus and the brain gets distracted elsewhere. But I guess that's kind of the point! Barry - before I expand further on how to integrate T specifically into your meditation let me see if I can dig out that old NHS documentation. I'm sure it will do a better job than me explaining it. Good luck all. | Jason | 04 Aug 2010 18:15 |
| Jason, it's great to hear from you as you've been blazing a trail for the rest of us and I am pleased the method is working so well for you. I might have read a lot about the technique but your posts here were one of the main factors that have led me to commit to the practice. I've just done a month of MBCT so far: 40 minutes a day without fail. To date I would say that I am definitely more emotionally stable as regards my reaction to tinnitus so I'm certainly going to sustain the practice. In the past I have done the technique for a week or so but then given up due to a persistent spike, ongoing depression or something like that. This time I have not allowed myself to get derailed. There's no doubt that it's tough.Today, for example, the tinnitus is screamingly loud. But I'm having many more better days than before even when it is significantly distracting. The only other problem I have with t right now is that it is intolerably loud when I wake up every morning. It always diminishes in volume after that but I'm not sure how I'd cope if it suddenly got stuck at that level of intensity. So it's so far, so good. I'll continue to report back on this thread from time to time. | Urusai | 05 Aug 2010 09:38 |
| Jason, a real blast from the past, lovely to hear from you, especially with a positive re appearance. Tinnitus is permanently loud for me, spikes are off this planet, i do deal with this by simply not reacting to it, but i'm almost premanently aware of it, i'd love to try some of this MBCT, you're a shining example, just this conversation shoves the 'little critter' back in its box for a while, its time i really shut this thing up. I'll check out the podcast tune for sure, you really are a real buzz, you know that, barry | balobalob | 05 Aug 2010 13:09 |