AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
I'm in the same boat. I don't know how much longer I can 'exist' with this. If I can't work then I'll end up broke with no one but my mother. I can't see how I can start anything when I'm struggling every day with this, especially my sleep which is critical for being able to be able to work. It's very difficult to have any type of schedule.I think I'm pretty done. I have no hope of improvement. In my heart I don't believe there will be any cure, any treatment. I won't leave because of family but I'm beyond done and only stay for their sake.
Are you talking about full spectrum CBD oils or CBD isolate as well? Scary stuff.Finally, be careful with CBD products. I am, to a small degree, involved in this space commercially and the amount of completely gross, unsafe products being sold is staggering. I will vouch for Sunsoil out of Vermont, because I have talked to them and met them and believe their lab reports are valid. I also think a lot of CBD vendors are falsifying lab reports, to omit THC, to overstate potency, and to omit potentially dangerous chemicals.
I was told about this here: https://en.wikipedia.org/wiki/Opipramol.What's the least concerning drug to try (in terms of tinnitus and hyperacusis)?
Thank you. I googled it, and I can't seem to find it is my country's medicine register, so I'm afraid it's not available here. But I'll ask my doctor about it.I was told about this here: https://en.wikipedia.org/wiki/Opipramol.
According to at least the German and Swiss leaflets, tinnitus is not a side effect
It helped me with sleep and anxiety and thus with tinnitus.
I hope this helps.
Any CBD or THC product is suspect to me; the commercial cannabis industry is awful and cares about its users about as much as the tobacco and oil industries do.Are you talking about full spectrum CBD oils or CBD isolate as well? Scary stuff.
I don't think there will be a "cure" for a while, but why not wait ~2 months for the conference in Florida to announce new info on the Michigan Tinnitus Device, before you put yourself in that mindset?I think I'm pretty done. I have no hope of improvement. In my heart I don't believe there will be any cure, any treatment. I won't leave because of family but I'm beyond done and only stay for their sake.
Of course you are right, but the emotional response isn't dictated by the logical mind. Plus I'm pretty bummed that nothing has any meaningful impact at all, hearing aids, sound therapy, masking (ha!), Lenire, benzodiazepines, antidepressants, meditation, acupuncture, supplements, mindfulness, talk therapy, crazy hippy ass treatments. Nothing has made a meaningful difference and 95% have made no difference at all.I don't think there will be a "cure" for a while, but why not wait ~2 months for the conference in Florida to announce new info on the Michigan Tinnitus Device, before you put yourself in that mindset?
I think deep brain stimulation surgery might help you. There's research going on by a Dr. Cheung and he is mapping the brain's activity to see which areas are affected by tinnitus. One person in his first clinical trial had a 75% reduction in their tinnitus after DBS surgery. Turns out, the area that the electrodes were placed in for this individual is where the imaging showed the tinnitus as active. And the reduction happened with the continuous stimulation. So it's possible that DBS surgery could help people like you and I. When we're this debilitated by tinnitus, cutting the head open does not seem extreme at all. People in our shoes would share that same belief.Of course you are right, but the emotional response isn't dictated by the logical mind. Plus I'm pretty bummed that nothing has any meaningful impact at all, hearing aids, sound therapy, masking (ha!), Lenire, benzodiazepines, antidepressants, meditation, acupuncture, supplements, mindfulness, talk therapy, crazy hippy ass treatments. Nothing has made a meaningful difference and 95% have made no difference at all.
Yeah maybe the Michigan Tinnitus Device will be the first thing created in the history of medicine to impact my tinnitus but on an emotional level it is hard to feel that it will.
The problem is you can't just go someplace and get DBS for tinnitus. Also that insurance wouldn't cover it. I'm guessing it costs some real money for people to put stuff in your brain.I think deep brain stimulation surgery might help you. There's research going on by a Dr. Cheung and he is mapping the brain's activity to see which areas are affected by tinnitus. One person in his first clinical trial had a 75% reduction in their tinnitus after DBS surgery. Turns out, the area that the electrodes were placed in for this individual is where the imaging showed the tinnitus as active. And the reduction happened with the continuous stimulation. So it's possible that DBS surgery could help people like you and I. When we're this debilitated by tinnitus, cutting the head open does not seem extreme at all. People in our shoes would share that same belief.
I also am hopeful for XEN1101 and we'll see about Shore.
Would this kinda surgery improve it permanently or is it like multiple visit kinda thing?I think deep brain stimulation surgery might help you. There's research going on by a Dr. Cheung and he is mapping the brain's activity to see which areas are affected by tinnitus. One person in his first clinical trial had a 75% reduction in their tinnitus after DBS surgery. Turns out, the area that the electrodes were placed in for this individual is where the imaging showed the tinnitus as active. And the reduction happened with the continuous stimulation. So it's possible that DBS surgery could help people like you and I. When we're this debilitated by tinnitus, cutting the head open does not seem extreme at all. People in our shoes would share that same belief.
I also am hopeful for XEN1101 and we'll see about Shore.
There are some clinical trials going on that you could participate in. They're free.The problem is you can't just go someplace and get DBS for tinnitus. Also that insurance wouldn't cover it. I'm guessing it costs some real money for people to put stuff in your brain.
That being said I would certainly consider a DBS treatment if it offered a real chance at a real reduction.
Thank you for your positivity.
Should be permanent with the electrical stimulation on 24/7. They just have to replace the battery once every 5 years. The battery is in the chest area.Would this kinda surgery improve it permanently or is it like multiple visit kinda thing?
I think they implant some wires deep in your brain and then have a power pack connected to it elsewhere in your body/outside? I think you keep them on zapping yourself continuously or maybe occasionally.Would this kinda surgery improve it permanently or is it like multiple visit kinda thing?
If you are talking about the same ones I looked into, in the Netherlands, you have to be a resident.There are some clinical trials going on that you could participate in. They're free.
Should be permanent with the electrical stimulation on 24/7. They just have to replace the battery once every 5 years. The battery is in the chest area.
The hope is that Dr. Cheung in San Francisco will do another clinical trial, a Phase 2. He did a Phase 1 with good results. One participant had a 75% reduction in their tinnitus. Since then, he has been fine-tuning the approach of how DBS should be done by furthering his research into the areas of the brain that are affected by tinnitus. With imaging, they can tell which areas are affected. He has stated that it's possible that the areas affected might differ from person to person, and that those results would determine where the electrodes are placed.If you are talking about the same ones I looked into, in the Netherlands, you have to be a resident.
I don't think there are any DBS trials in the United States that are currently enrolling.
But I agree, cut open my head, I don't care.
Most of us would take 75% reduction.The hope is that Dr. Cheung in San Francisco will do another clinical trial, a Phase 2. He did a Phase 1 with good results. One participant had a 75% reduction in their tinnitus. Since then, he has been fine-tuning the approach of how DBS should be done by furthering his research into the areas of the brain that are affected by tinnitus. With imaging, they can tell which areas are affected. He has stated that it's possible that the areas affected might differ from person to person, and that those results would determine where the electrodes are placed.
Someone did have the procedure done in the Netherlands and said it gave them their life back. If someone is ready to off themselves and they've lived in different parts of the world, and are comfortable with that, they could consider moving there. Sounds like a long-shot, but maybe not.
There are 2 other upcoming DBS trials, one in France and the other is in another country (can't recall). But you probably have to be a resident of either to participate.
It would be unreasonably speculative to go and live in a country - get residence - just on a % possibility a treatment will work.If someone is ready to off themselves and they've lived in different parts of the world, and are comfortable with that, they could consider moving there. Sounds like a long-shot, but maybe not.
Depends how much you are suffering.It would be unreasonably speculative to go and live in a country - get residence - just on a % possibility a treatment will work.
If a person gets really severe and doesn't have any treatment options to turn to, and feels they're confidently ready to off themselves, I think it would certainly be better to try a Hail Mary approach first, even if it's a long-shot. Dreams don't happen without dreaming first.It would be unreasonably speculative to go and live in a country - get residence - just on a % possibility a treatment will work.
Folks are afraid of a dental drill. Can you imagine the bone conduction of a skull drill?cutting the head open does not seem extreme at all.
Folks are afraid of a dental drill. Can you imagine the bone conduction of a skull drill?
As far as I recall, I read on a German forum for people who struggle with withdrawal or side effects, that Vitamin C and Vitamin E can help. There is also Alpha-Lipoic Acid which might help. These are all antioxidants.I'll have to get off the Mirtazapine at some point or I'm dead.
I wouldn't say that benzos are dangerous. I would say that they can be dangerous if used improperly. I have used them on and off for 30+ years and have never had any issues. I've also found that lately they are not used that often and most doctors will no longer prescribe them, even psychiatrists.Benzos are dangerous and have a bad reputation for a good reason but they're also some of the most commonly used drugs in the West and do not seem, generally, to cause tinnitus in any significant number of cases. Abrupt withdrawal from a moderate or high dose, on the other hand, definitely does do that.
How are you now dan?! I wish I could say I was better.Just believe in the power of your brain. Tapering off benzos definitely jacks up your tinnitus and reactivity. So once you clear them out of your system, you should be in a better place.
Keep your ears safe meanwhile and do not under any circumstances get pushed into any noisy activity even with earplugs. You are a big guy? Don't let anybody mess with you.
The 2 year mark will surely bring a reduction to your suffering (barring any additional noise reinjury). I promise, but you have to make distancing yourself from noise a religion. Any plate shattering in the kitchen or a dog bark or someone shouting, will negate all progress and have to start from square 1. I am no newbie to severe tinnitus & hyperacusis, since 2011.
P.S. Don't just disappear on us one day without coming here. I really hate it when severe folks post for a while and then never come back, leaving us in question about their fate. @Geo was such a member with loud reactive tinnitus, same story, posted for a while and never heard from again. Although he did mention he would never take his own life. That dude was a fighter.
Hanging in there my friend.How are you now dan?! I wish I could say I was better.
Curcumin? LDN?Of course you are right, but the emotional response isn't dictated by the logical mind. Plus I'm pretty bummed that nothing has any meaningful impact at all, hearing aids, sound therapy, masking (ha!), Lenire, benzodiazepines, antidepressants, meditation, acupuncture, supplements, mindfulness, talk therapy, crazy hippy ass treatments. Nothing has made a meaningful difference and 95% have made no difference at all.
Yeah maybe the Michigan Tinnitus Device will be the first thing created in the history of medicine to impact my tinnitus but on an emotional level it is hard to feel that it will.
We don't have to agree, but, my viewpoint on this is: they were overprescribed for a long time and then Purdue cooked the golden goose with their illegal opiate marketing which caused a huge crackdown on all controlled prescriptions and now benzos may be underprescribed.I wouldn't say that benzos are dangerous. I would say that they can be dangerous if used improperly. I have used them on and off for 30+ years and have never had any issues. I've also found that lately they are not used that often and most doctors will no longer prescribe them, even psychiatrists.
As for them causing tinnitus, so far Clonazepam has been the only thing that has helped me. Problem is of course that it's not something you should take daily for long term otherwise that's when it can become dangerous. So, I get maybe one or two days a week of relief.
Glad to hear.Hanging in there my friend.
I find the MOST important thing with severe tinnitus is being able to sleep through the night. Once you can do that, you're golden.
OK, so my naturopathic doctor and my urologist both believe my unrelenting symptoms are either an embedded UTI &/or biofilm related.I was led to believe I had IC years ago.
I no longer believe in this label.
It was a biofilm UTI that I've successfully treated. Pain free for a long while now.
Part of my healing was consulting with Prof. Malone Lee in the UK who has a clinic specifically dealing with embedded utis.
I have many tormentors. Becuse I suffer with intense, permanent reactions to medications and supplements, namely increased tinnitus & hyperacusis & noxacusis, I can't address any of my other tormentors, like interstitial cystitis. I am wondering if you have found any relief and if like me, you suffer unrelenting increases in tinnitus & hyperacusis from both allopathic and naturalpathic approaches to treating your symptoms of interstitial cystitis @Bill Bauer?These days my main tormentor is Interstitial Cystitis. Today it made me cry for the first time.
Today I took the first step in preparing for what I will be doing if the various treatments don't work out.