I'm Not Committing Suicide. I'm Being Murdered by Merciless Tinnitus.

For me being in this position, my whole focus really has become a desperate obsession to understanding and figuring out the localization of this monster's grip inside me towards any possible cure.. It all goes back to how it started to pinpoint the specific injury around the ear, neck/throat or nose area to fix it. It's not my brain. I've had enough drugs and electrical zaps to kill a horse and it didn't do a thing for T, but made me worse; a zombie. They don't care. Lost total trust.
There don't seem to be any ethical Drs. around anymore (under medical ins.) willing to take the time to at least sit down, truly communicate (remove the stoic faces) and help evaluate in a whole approach to develop strategies towards possible relief. Maybe through the "holistic" field, but most of us do not have 10+k to spend out of pocket for what Drs under our $$$$ insurance should be providing.
Because of the corrupted system, that's where much of my frustration and anger stand.
@Bam - your injury T originate from whiplash;neck?

 

Quite honestly, I don't get it. -- Until your strawman comment (accusation?), I didn't even know you were thinking in terms of having an argument. I made what I thought were "comments", not arguments. I wrote them because I found it more than a little perplexing that you seemed to be attempting to undermine what I had written about adaptogens by inferring they weren't "scientifically credible".
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In case anybody reading some of the disparaging remarks about adaptogens might think less of their potential, I'll mention some things I think are worth consideration:

1) They've long been used in traditional medicine systems such Traditional Chinese Medicine (TCM). Literally thousands of years worth of traditional knowledge and observational studies have been incorporated into the uses of many different herbal adaptogens.

2) Modern day science began studying these herbs in earnest in the 1950s and 1960s, primarily Russia. Several prominent scientists actually coined the term "adaptogens" at that time. They didn't do it for commercial purposes (as in beginning some kind of scam). Their research was primarily being done for the military, to try to discern whether adaptogens might help solders in the battlefield.

3) The research they did was extensive, with over a 1,000 studies done by 1982 alone. Their primary intent apparently was to use the adaptive machanisms of plants (hence the term "adaptogens"), and see if they could develop drugs to in some way mimic these plants. -- Given the term "adaptogens" was coined by scientists, and they published their results, I always assumed that this lent a certain element "scientifc credibility" to this field of study.

Whether or not anybody accepts that scientific credibility doesn't matter to me in the least. What does matter to me is whether or not something actually works. I've come to the firm belief adaptogens do have a high degree of efficacy for many people. The fact that scientific studies bear this out is all the more reason for people to consider using them.
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Which brings me to my main point: -- I think it could be extremely beneficial for people on this forum who are dealing with the overwhelming stresses of tinnitus, to at least consider whether adaptogens in some form might be helpful for them. I think this could be helpful in so many ways, including the potential for major sleep improvement, less anxiety, less depression, etc.

I myself view adaptogens in a broader sense than even those Russian scientists did all those years ago. I think in terms of literally ANYTHING that can help with our overall stress response. For instance, the highest concentrations of Vitamin C in the body are in the adrenal glands. It only makes sense to me that during times of extreme stress, those Vit. C reserves would likely get depleted pretty quickly.

I myself supplement with approx. 5 grams of Vit. C daily, and I sometimes think I should take more. I think many on this board who are going through such difficult times coping with tinnitus would do well to consider supplementing with Vit. C as well. My favorite brand is non-GMO NutriBiotic Sodium Ascorbate 2.2 lb. I often mix it in with the foods I eat, as it has no flavor, and is slightly salty.

[I also occasionally put a 1/4 tsp in my mouth and let it soak in my gums for 1-2 minutes. I believe this goes a long way in reducing the potential for some very nasty infections in our gums and teeth that might otherwise take root, necessitating gum surgery and/or root canals (something people with tinnitus should avoid at at all costs). Opportunistic infections in our mouth rapidly deplete Vit. C that's normally found in the gum tissue, and can quickly lead to localized scurvy.]

Healthy, supported adrenal glands are also critical to the functioning of the Hypothalamic/Pituitary/Adrenal (HPA) axis. As most people know, the pituitary gland is critical for many functions in the body, and I've seen references to it and the HPA axis affecting tinnitus. Some companies make and market animal extracts of these three parts of the body. The company I believe has some of the highest quality extracts is Standard Process. I've read many amazing accounts of people being helped by them.

I've read books on adrenal health over the years, and have spent many hours studying this topic. I'm willing to share what I learned along the way, especially as it pertains to how it might improve somebody's tinnitus. But I really have no interest in debating whether or not everything single tidbit I might mention is "scientifically credible". But if somebody unnecessarily disparages what I feel might be very valuable information, I will provide some supporting perspectives. -- Best to All!

@Starthrower
@Bill Bauer
@Greg Sacramento

 

I applaud your efforts to try to solve this problem through natural means... there are few others here such as @JohnAdams, whom might appreciate this info (assuming it isn't old news to them):

https://www.nutraingredients-usa.com/Article/2014/07/28/Study-Pycnogenol-relieves-tinnitus-symptoms

I'm currently experimenting with this supplement, but so far it is too early to be able to tell if it's doing anything.

Make sure it is extracted from the real French maritime pine and not from the cheaper Chinese pine.

The price is usually a good indicator, as the real thing is not cheap.

 

And that's really it. It all comes down to the sort of person you are and how well you tolerate stress. How easily your flight or fight response kicks in and reacts to this condition. My condition is effectively Groundhog Day. Virtually every day is the same over and over and over again. I wake up and it's at its lowest point, sometimes I can barely hear it. So I get several blessed hours of relative comfort. By 2-3PM it starts picking up. By 8pm it's on. By midnight it's at its loudest point. Sometimes I can get to sleep without anything. Usually it's a tab or two of magnesium and some melatonin. Wake up and it's wash, rinse, repeat, always repeat. I swear they should name it Groundhog Day Tinnitus.

Point being is knowing that I'm going to have the lows as well as the highs - allows me to deal with it much better on the whole. Sometimes I get several days in a row where it's really low and I revel in it. And then the other times for when no discernible reason I get several bad days in a row. It's a motherfucker but I deal with it because I know it'll pass. Those are the days I medicate more heavily or just get drunk instead - booze works wonders for my tinnitus it's just too bad I can't stay drunk all the time...or can I?

 

Well there's your problem right there, Verne. Obsessing only makes it worse. The brain is pretty amazing but it also has some very deep flaws in its design. One of the major ones is that it's too easy to become stuck in a self-reinforced negative feedback loop. That's an actual thing. That's what depression is.

That's why the combination of drugs and training - CBT for example - is key for people like you to, if not overcoming, to manage it effectively. You need to train your pre-frontal lobe to take your brain out of gear - and it does take training and practice to do it like anything else. Stepping down the motor so to speak. Allowing the amygdala to relax. When that occurs your brain isn't producing cortisol and the fusiform cells in your DCN can relax and that lowers your tinnitus. It's all connected and handling it is a process.

Think of it as getting your inner Spock on - Vulcan training for a disciplined and orderly mind makes everything else work that much better.

 

Have you seen a Neurosurgeon? Severe neck instability is common cause of tinnitus and correcting the problem via surgery generally eliminates the problem for the overwhelming majority of patients.

http://www.tinnitusjournal.com/arti...-upper-cervical-spineoperative-management.pdf

Unless you've been assessed for this than you're giving up rather prematurely. Other thing is any type of somatic tinnitus is always going to be worse initially. From the sounds of it a lot of damage was done and this is the sort of thing that takes years to heal from. That means your tinnitus should correspondingly lower over time as well. You've only had it for just over a year you really need to give it some time. Meantime follow the same advice we give everyone. Get on the meds, start taking Nortriptyline. Take benzos when you need to. Get drunk when you need to. Get a proper assessment on your neck. Start doing physio. Eat right. Exercise. Seek counselling. Seek TRT. There's a lot you can do and a lot you MUST do if you wish to prevail. I'd never tell anyone not to kill themselves but it's not something I'd ever encourage or hope someone does - unless they're like Hitler sort of evil - but you are honestly jumping the gun here. Do all those things and tough it out 1 more year and see if there isn't a major enough difference. There should be. And if there isn't you can always contemplate it than.

I get it. The first 3 months for me I did not think I was going to make it. The following six months weren't much better but at least I wasn't contemplating how I was going to do it. Year and half and now it's manageable most of the time and I'm actually finding answers to why it's happening to me. New devices and treatments are also literally on the way as we speak - Neuromod, PoNS Device, Vagus nerve stimulators, Dr. Susan Shore's work. Some of it is here now, some of it is due out in 2019 and other very soon to follow. And most any of them, or some combination of them, meds and therapy - physical and mental - will be an effective cure. So topping yourself when we're so close to that - 5 years tops - would be really bad timing on your part.

 

Great post @Halsy!

@Bam, I agree almost completely with halsy's above post. -- I've been considering whether to alert you to a post made on an ME/CFS forum by a woman who also suffered a major car crash. I thought of you as I read her post. Below are her descriptions of what it was like both before and after getting CRANIAL OSTEOPATHY. Perhaps there will be something in it you'll find useful. Her description of this unusual treatment at the above link is on the same thread as the following before and after post.
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@Dainty. perhaps I missed it in your post but how much improvement did you gain from cranial osteopathy?

Dainty's Reply:

From:

• Almost completely bedridden - could usually get to bathroom on my own and shower sitting on the floor, but also had paralytic episodes that would last a good 12 hours or more
• PEM that was generally delayed....the next day I would often be okayish, but approx. 48 hours later I'd completely crash. I described it as "fatigue so severe it ought to be classified as a form of pain."
• No tolerance of natural light, even daylight, all windows must be blacked out
• Fibro pain - my entire day was spent coping with/distracting from my constant pain. I was often in level 7-8 pain as a baseline and it would shoot up from there on a regular basis
• Food reactions - for about 5 years there were only 5 specific ingredients I could tolerate, prepared specific ways. Before we figured that out I was constantly down to 1 or 0 foods I could tolerate, and often had to receive IV nutrition for it
• Chemical Sensitivities/environmental reactions: had to live in a custom built environment for folks with MCS--prior to that was living in a stripped down bathroom where I was still having multiple life-threatening reactions per day. The porcelain trailer saved my life, got to experience days without my airways closing at all for the first time in over 6 months. Reacted to all bedding and clothing, required everything be organic unbleached, undyed cotton that was boiled and washed for months before it was tolerable. No soft bedding I could sleep on; was mostly bedridden on bare wooden slats. Had bedsores. Very uncomfortable. Reacted to all paper. All water had to be filtered due to chlorine reactions.
• Cognitive: could not handle any administrative stuff. Required caregiver to handle all finances, all appointment bookings, all purchases, etc on my behalf. My parents had to apply for disability on my behalf.

To:

• Take the dog for a 10 minute run every morning, work 20-25 hours/week housecleaning, do own laundry by hand, do own cooking from scratch, do own dishes by hand. No PEM ever.
• Able to drive!
• Able to tolerate natural light, direct sunlight still problematic, but sunglasses and clothing cover fixes it
• A fibro flare up happens occasionally, perhaps once every other month, where pain can get as high as an 8. Otherwise my only pain is menstrual cramps (which still get very severe) and unresolved neck discomfort from the accident.
• Food--able to eat all foods except gluten, dairy, anything in the onion/garlic family. Still allergic to lavender.
• Environmental reactions: still need to wear a gas mask when out and about. Currently live in a standard RV with standard bedding. Must live fragrance free, but able to wear normal clothing if not purchased from thrift store. Running water, including shower water, no filtration required. Paper and ink no reaction.
• Cognitive: I handle all finances and administrative stuff with aplomb. I don't notice brainfog anymore. Possibly some short term memory stuff still, but not enough to cause much issue in day to day life.

This process obviously did not happen overnight, and you can read about how severe I was and my discoveries as I was improving in my blog and on my posts throughout this site. This blog post form nearly 5 years ago explains about my experience with PEM being relieved, and also a bit more about all the lifestyle aspects that I was practicing along with the cranial osteopathy that was essential for it to work. Looks like that was 2 years into my treatment.

It's been a very long journey.

Edit: here's another old blog post that details many of my structural issues at the time treatment started. This was from 2012.

 

Thanks, Lane. Agreed 100%. Osteopathy. etc. There are all kinds of avenues to pursue here and I haven't heard you've pursued ANY of them apart from you got hurt, life sucks now, and you can't take it anymore. The road to recovery for any sort of trauma is hard work. And it is actual hard work. If you don't do it, you'll never improve and you may as well just end it. If you really don't want to die however than start doing the work. Life isn't a gift. It's something you have to fight for. Everything on this planet that isn't human - and unfortunately far too many humans as well - understand this reality on a daily basis. There are people all over the world who suffer from this exact same shit and they have zero access to the healthcare, meds, etc. that those of us in the first world do. They endure. A lot of people here would probably rather take the quick way out but they have families to support and people who depend on them so they endure. The only real question is how bad do you want to live? What have you done/will you do to make that happen?

 

@Halsy. Great input, so I called the great neurosurgeon back to arrange for a lobotomy and a sh#tload of Zoloft. Surprisingly he agreed! Soon will be out with Tinky Winky, managing mindfulness with no clue about -my- T.
Very blatantly misinformed to say the least.

 

Just a though but if this new device works to reduce tinnitus and takes someone like me and you @Telis from daily hell to basically living normally again the these ‘professionals’ that have spouted this volume doesn’t matter bullshit for years and shamed and marginalised severe sufferers will be finally proved wrong. We weren’t in fact ‘depressed’ or ‘anxious’ after all. We just had nasty loud tinnitus and an actual treatment that lowers volume helped us and eh voila now we’re happy!

There should be a total shit storm of outrage directed at these clowns if this comes about in the near future.

 

I can’t imagine this device working, but here’s to hoping. Since the last major tinnitus increase, I can’t get rid of these headaches, my hearing loss is causing this pressurized feeling in my ears/brain, but the loud tinnitus isn’t helping. My hearing is painfully distorted, just a little background noise and my brain is scrambling all these external noises and interpreting them in some kind of painful manner, voices are like sharp painful tinnitus sounds. And then I can’t hear some things at all, and then all of a sudden another noise like a plate on the counter will jump into my brain like it’s a bomb blast.

My head and ears feel stressed, tired and are in pain all day, I get slight relief after sleeping a little, but not a lot. I’m sure it’s all just anxiety, even when I’m trying to doing something like work on my car, learn to play the piano, or watch a hockey game, and have to stop, it’s all just my imagination. Also, I’m sure I can hear fine, and the tinnitus zapping through my head isn’t actually painful. And even though the hearing loss clearly shows on the audiogram, it’s probably just that I’m feeling anxious during the tests, I’m sure my hearing is all good as well. It’s all just in my head, it’s my thoughts for sure. I must have become a hypochondriac after I damaged my brain, weird coincidence. I mean I must be crazy, people have tunnitus and don’t even notice it, for me, I’m in so much pain from the noise that I can’t function 90 percent of the day, it’s got to just be my way of thinking.

All those head injuries in the past, the traumatic brain injury, the post concussion syndrome, they don’t actually do anything, I mean they show up on the brain scans, but I mean, other people have ear ringing and get to work and are productive, I can’t for some reason, it’s all in my head. Plus if you look at me, I’m never complaining, or even talk about it, so I must be absolutely fine, maybe I’ve become lazy.

Just a big mix up, all of this, I have had a high pressure career in the past, never experienced anxiety in my life, own my own business, played high level sports, achieved more than most, but I guess people are just better at handling my condition than I am. I just don’t possess the same mental strength and fortitude as some of these incredible people here, so I just chalk it up to anxiety and my imagination. I’m sure this isn’t even a real condition, so why would that device help me. This so called tinnitus condition doesn’t bother most people, I must need another solid round of CBT, change my way of thinking, and I can get back to over achieving like I once was. Why even bother with a device if tinnitus is a mental problem?

 

Remarkable post @Telis. -- I'm torn about what rating to give it however. "Funny" came to mind first; then "Winner"; then "Hug"; then a tie between "Helpful" and "Useful", certainly "Informative", etc. -- Writing things out help me think a little better, but not so much in this case. So I'll go with my instincts, and rate it a (heartfelt) "Hugs". I'd more than likely give it a "Soulful" if that was an option. -- Take care...

 

Genius post.

If this device works I will help you get one. Don't give up on it just yet. It may take the edge off.
We'll know soon.

 

Telis all I can say my friend is that you’re not alone. There are many of us who have horrid screaming heads and lives that have been torn apart. Who went from ‘normal’ and successful people to tortured recluses struggling through each painful day.

Nobody is immune from this nightmare. It can happen to anyone at any moment even if you’re fit as a fiddle and happy as Larry. Even these doctors and people who downplay tinnitus can at any moment be struck by it and the horror for them will be magnified. Suddenly all the things we’ve described will hit them like a steam train. The fear, the panic, the desperation, the frustration, the rage.....of the inescapable scream that never ever ends.

You’ve been through a lot Telis. But many of us understand you and we are with you mate. We can’t take away your suffering but we totally get it.