- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I am toying with the idea of doing the am 101 trials. It is a very long way away for me to go and very difficult to achieve.....but I am feeling so desperate that I would cut off my leg to do something aobut this. You said that you took part in the am 101 earlier this year. Did it help? Is it any good? Sorry for asking you this but just need some guidance here and you seem to know whatl you are doing and talking about.
I had a brief look at the AM101 thread which is nearly 60 pages long at this stage; plenty of info there - here is one member who has pretty much answered your question already:
I am in the AM-101 trial right now. Got the 3 injections in mid-September. Now it's wait and see. They say it takes up to 90 days to see improvement. Of course, I may have received the placebo. I will know in mid-December when I go back for my final follow-up. If I did get the placebo, I will definitely take them up on their offer to get the drug, for sure, in December. I hate going through those injections again, but if it reduces the loudness of my tinnitus, absolutely!! The injections do not hurt because they numb the eardrum with Novacaine cream. It is frightening when the doctor releases the drug though....it's cold and wet, deep inside your ear. The worst part, for me, was when they suctioned out the excess Novacaine cream. That suction device is really loud, not only over by the wall, but inside your ear. I held that nurse's hand really tight! But the entire actual medical part only takes a few minutes. Then you have to lay there for 30 minutes, while the medicine soaks in, from your middle ear, down to your inner ear. I strongly encourage anyone who has had tinnitus for 3 months or less to get enrolled in the Auris Medical Phase 3 trial ASAP. It ends next summer. The drug will probably be approved by the FDA in 2016. But you can get it now (for free)--actually they pay you $100 a visit too. I feel so lucky to be a part of this. I pray it works for me.
I sense from a couple of your posts that your real problem in terms making a decision comes from the fear of the medical procedure. So what to do...?
1. Make sure that you are actually eligible for the trial; if you are not French and would like to take part in the French clinical trials, then that could be a potential problem (there are strict protocols as to whom can take part; language is one such criteria). Similarly returning to the UK for the trial may be a problem if you are no longer part of the NHS. So examining eligibility would be the first step...
2. What is the cause of your tinnitus? Again - another eligibility criteria to consider.
3. Decision making. What would be the "risk" of doing the procedure as opposed to not doing it? Not really anything - worst case, you end up with no improvment. What would be the risk of not doing the procedure as opposed to doing it? A lifetime of tinnitus and suffering - or at least for the foreseeable future. With those two scenarios in mind, the decision should be fairly evident.
I am generally irritable with the number of people worrying about things which aren't really an issue - ie. fear of simple medical procedures (chances are you already had eartubes inserted as a child). As a comparison, think about the soldiers on the frontlines of the war in Afghanistan. They get their body parts blown clean off. Some of them will need to have as much as 25 litres of blood pumped through them in order to stay alive - that's five times as much blood as there is in the entire human body of an adult. Now that's what you call a bad day at the office. Something to think about...
Could be that i am becoming obsessional about this.
No. Severe tinnitus is serious medical condition. It needs to be treated aggressively. Do what it takes to make it happen. If you have a fear of medical procedures, then speak with the doctors about it - perhaps they can help with sedation (but there could be counter indications with the clinical trial protocol; ask them).
Had xanax but have decided to stop taking all meds.
What do you thnk? Did you do meds?
I am not a doctor. I can't really help you with questions like that. Certain drugs would require tapering if you have been taking them for a while. I have done about 10 pills of Zolpidem for sleep management in the very beginning of my tinnitus ordeal. On occasion I have (mis)used muscle relaxants for their sleep inducing effect - again about 10-15 tablets in total; so nothing major. For sleep management, I would recommend 6mg of Melatonin, ½ hour before bedtime. I have not done any anti-anxiety medication.
If you believe you have anxiety and would benefit from medication, then speak to your doctor about that. After all, medication is there to be used when really needed. But it's always a balance between "need" and "side-effects".
My T seems to be getting louder each day but I am also doing nothing but sitting in bed all day on the internet looking up info about it.
That's normal with serious tinnitus.
My local doc yesterday was more than useless - he shouted at me and was very rude. I am in france. I speak french okayish. Because of the worn out condition that i am now in, I asked him if it was ok if i speak in english (as he told me that he understood english but could not speak it) and he answer in french. Well that was it! He started screaming that I should go to the uk to speak english and carried on like that.
Language can be a problem - agreed. But that is not an excuse for rudeness.
I generally have not have it happen to me - perhaps because I am privately insured with the German healthcare system, but if it did happen, I would just calmly tell the doctor "Do you want your money or not? Because if you do, then learn to speak properly... And no, I don't have a hearing problem - so no need to shout".
Many many thanks for reading this..
No problem.