Suicidal

I agree with literally nothing that guy says, all my misery is due to Clonazepam so I am a bit biased and would say taper off completely and only use for extreme situations.

Once I'm off I will never touch a benzo again.

 

Thanks very much for your honesty. If I understand correctly, you were on daily Clonazepam for 4 years? It's strange as the ENT in Harley Street London pumps that stuff out for fun for severe tinnitus.

I think Diazepam is the lesser of two evils?

 

Yes, I was on it for 4 years when my psychiatrist said I could just stop. I had 0 side effects besides irritability, and my tinnitus got better.

When I reinstated, I had an extreme paradoxical reaction and it made the tinnitus go insane.

Diazepam has a longer half life, but as far as withdrawal effects go, it is the same as any benzo.

I also forgot to ask which Michael you were referring to --
Michael the M.D. or Michael the Psychologist?

 

One and same?

 

I think Clonazepam affects both GABA-A and GABA-B receptors whereas Diazepam affects only GABA-A. This is why at times switching from Clonazepam to Diazepam doesn't work. Also, there are studies showing Clonazepam effectiveness for tinnitus but not Diazepam. Diazepam is definitely safer and easier to taper though.

 

Dr. Oetker.

 

Hang on there buddy, your life is not over yet. There is still a good chance cannabidiol will provide us relief soon. I mean, you're from the US, the stuff is probably easier for you to acquire than me, my package is still stuck in transit. Try to distract yourself for as much as possible, these dark thoughts do you more harm then good. I've said this before but I highly recommend some exercise too. Wishing you the very best.

 

1. Appointment with ENT was yesterday. So far I'd say it was useless, as I expected. He did not want to prescribe Clonazepam even at 0.5 mg a day which so far is the only thing that helps me. He did recommend trying Acamprosate but my own research shows that it has mixed results and even though it has been around for a very long time, it still isn't labeled for treating tinnitus. No evidence that it actually works.

2. Gabapentin did not have any noticeable effect.

3. I was taking up to 400 mg of Gabapentin a day.

The fact that Gabapentin didn't work for me leads me to believe that Acamprosate won't work either because they both function in similar ways. But until I give it a try he won't prescribe any more Clonazepam. I'll be starting to look for off-shore pharmacies or other sources if I can't get an Rx locally. Might have to look at psychiatrists that just do medication management.

I know the risks of dependence/tolerance/addiction very well and have used benzos on and off for 30+ years and have always self-managed without any issues. Lately I've been taking 0.5 mg every other or every third day. It really does help but the in-between days can get very annoying. I know better than to take it daily, even at such a low dose. I'm running low so it really would be nice to have a new Rx. I have nothing to lose by trying Acamprosate though so I'll give it a shot.

My tinnitus was made worse by acoustic trauma but its underlying cause is hearing loss due to long term exposure to loud noise by playing guitar in loud bands for over 30 years.

BTW, as for Mirtazapine, lower doses work better for sleep than higher doses. I take 7.5 mg most nights and within a half hour I start nodding off on the couch. Then again, I also combine it with Melatonin/Valerian and sometimes THC.

How does he recommend using it?

I don't know if I disagree with everything he says but I do find some of his ideas to not be supported by research or evidence other than anecdotes which only mention correlations rather than verifiable causations.

 

Thanks, @StoneInFocus.

Hope it helps! Keep us posted. I appreciate the help and support. I was worried about CBD cuz some people report it worsens them.

 

The National Weather Service says that the likelihood of a person getting struck by lightning is roughly 1-in-15 thousand. So that means it’s more likely that a person will get fried by a thunderstorm at some point in their life than ever develop hyperacusis/noxacusis.

The ear “experts” say that 1-in-50,000 people get hyperacusis, and I would venture to say it’s even more rare to develop severe hyperacusis/noxacusis.

So it’s no wonder that society and the medical community doesn’t care about us sufferers — we’re so rare that it’s more likely to get struck by a bolt than ever get these problems, and clearly people at large are not worried about protecting from thunderstorms, so why would they worry about sound and the conditions we have?

The unfortunate truth is that the cards are stacked against us with these problems, as we all know. Convincing people that our cause matters is so hard. Our quest is frowned upon by the masses, like a cesspool of dung that vies to be photogenic. They just think we’re a joke and should suck it up.

 

I am so terrified of living with it forever, I can't... I really can not do it. I am crying my eyes out while thinking if dry fast would bring my life to a relatively peaceful end.

 

Everything came through the mail and I am planning on starting a trial tomorrow.

The reason I suspect some people reported adverse effects was because they used "CBD oil", which usually contains THC as well.

As far as I know, no one on Tinnitus Talk has actually tried pure cannabidiol isolate before.

It's also important to note that 'tinnitus' has never been officially recorded as a side effect of cannabidiol, see this pdf.

I'll keep you updated for sure.

 

I'm in CA and pure CBD is sold in CBD clinics here. Tinctures, teas, oils. etc. No THC.

I'm wondering how potent the medication is vs. the pure CBD you can buy.

I've seen multiple people in the US state they used pure CBD (lab results posted - 0% THC) and not get relief. Why I wonder, if the medication is stronger vs the CBD I can pick up.

 

I can't do this. I just cannot. I feel my last bit of sanity slipping away fast. Yesterday I came very close to doing what I do not want to do. I really don't want to die, but I have only a tiny bit of control left and even that's on slippery ground. This force in me is just too powerful. I can't be absolute sure, but I do think Mirtazapine is what's destroying me, but of course it's impossible to be fully sure.

I can't taper slowly (that's already been tried), but I have to do WHATEVER in my power it takes to get off it, and FAST, because I AM DYING. I won't be able to fight of this force that's pushing me towards the edge much longer. I know it.

What would you do in my situation? Use any other drug I can to pull through the withdrawal or stay on Mirtazapine and put another med on top?

I don't know what to do... I don't know what's right. What's the least concerning drug to try (in terms of tinnitus and hyperacusis)? Anything else I can try? If you have any ideas, let me know. Please help!

 

Hey @TheDanishGirl, please hang in there. I have seen some of your previous posts and from my perspective you are a true warrior and fighter.

I can't offer advice on medications, but if you are at where I was a couple of months ago, personally I would be doing whatever I could to try and give myself a break and regroup. If that means try something on top of the Mirtazapine, then so be it. Even if it's only for short term. Just to give yourself a more stable foothold mentally. Then back off the Mirtazapine.

I'm far from being an expert on this, but I did try Mirtazapine for sleep for a few days and it did give me pretty crazy body tremors that lasted for over a month. But they did stop after ceasing dosage.

Do whatever you can to keep going Danish. You have come this far, I know you can get through this.

 

Great post - as usual - incredulity with purposeless suffering well-articulated.

As I have asserted and argued previously - the universe - or nature - does not care about any one individual. The only purpose of species - from as far as the evidence indicates - is successful reproduction and survival. The human body is not an infallible organism. It can get ill. It can become incapacitated. It can die young.

You ask - why me? Or why you?

My answer: human beings get ill - they can suffer with long term chronic conditions. Some people get through life without too much pain. Others suffer. That is the way the cards are dealt out.

Your best question and most useful and really only question is: "how to cope?"

So I suggest you forget all the rest and focus on this as we all are doing.

Life can still be a gift - even with 2% wellbeing status and you have to hope and aim for that to improve no matter how bad things seem right now.

 

That you acknowledge I'm a fighter, it gave me a tear in my eye (I've cried so many times in these past days, but this was for a better reason). It's so rare to get acknowledged for that, and I needed to hear it. I do feel like a true warrior these days, but like we know, "normal people" will never come close to understanding the intense internal war this is, so they don't acknowledge it. So thank you for saying that. The enemy is drawing closer and getting stronger, but I will do my absolute best to fight it off.

I had a talk with my mum. I feel a tad bit better now. A small glimmer of hope has once again appeared. I might be struck by the enemy within a short while once again, but you're right. If I can't fight it off with what weapons I have now, I have to build some strength (by taking another medicine). Gotta do whatever it takes to keep myself alive.

 

@TheDanishGirl, I, too am sorry to hear of your suffering. I have been feeling pretty bad myself over the last few days. It is hard... and it is unfair.

Do you have a psychiatrist you can talk to? Is there a hospital you could go to to try a taper and start another drug? Some drugs you can do a crossover and it would be good to be monitored whilst you are doing so, even if it is just the start of a taper. During this period, it may help to have something else to help calm you. When I was in hospital, I was put back on a previous drug and given benzos at the same time. It was a relief to be around others I could get to know, who has various problems and have people monitoring me.

I hope you can find a way and find some relief.

 

I wish there would be a switch to turn the tinnitus off.

If this is not possible, I wish there would be a switch to end life quickly and painlessly.

 

I am pretty much done with psychiatrists. They always make me feel even worse, because they imply it's all got to do with depression/anxiety and I simply haven't tried hard enough to get better. I can get admitted to a psychiatric unit if I am a threat to myself or others... maybe... it depends if there is a bed available. Many people in our country gets turned away from being admitted, because there is simply no room for them. I am really scared of getting admitted though. I fear losing my last shred of control and getting medicated by force. They CAN do that, if they deem you a threat and not being cooperative, as in not willing to take whatever medicine they suggest.

 

I don't know about Denmark - but in the UK - forced treatment needs very special circumstances - signature of 2 doctors and signature of close family. This only tends to happen when the patient is a danger to themselves and/or others and suffers from some mental condition.

Maybe you should check the legal situation in Denmark.

 

I looked it up. It doesn't require signatures here (that's not stated anywhere as far as I can see). The patient only has the right to a 3 day thinking period, where the medical team will try to persuade you to take the medicine voluntarily. If you are a danger to yourself and/or others (which I am), they can lawfully force the medicine upon you after 3 days if they deem it necessary. Plus even these rules get violated in my country. There are several articles about it on the internet.

 

I'm not really sure if I understand what you mean by this.

Cannabidiol is a singular compound.

100 mg of cannabidiol in Epidiolex is exactly the same as 100 mg cannabidiol dissolved in olive oil for instance.

As long as what you buy is in fact CBD isolate (contains no other cannabinoids) it doesn't matter from which source you get it.

Regarding people not getting relief, if we look at the Retigabine and Flupirtine threads, people generally reported positive results after several months of consecutive use.

By the way, I just started using cannabidiol today. Just a few minutes ago I consumed 2.5 mg times my body weight.

I'll give an update next week at the latest in the cannabidiol thread.

 

I meant what you answered - that it's the same ingredients. I'll check your progress in the thread. I have a CBD shop up the street that sell pure CBD for $20 for a small bottle. I will maybe try it as well. At this point, I need any help.

I was just pointing out that I have heard of numerous accounts of people using pure CBD for awhile. They got anxiety relief but no help for the tinnitus.

 

Wow, $20 for a bottle! I just bought a bottle that cost about $110. Of course price depends on the strength, but i'ts crazy expensive here regardless. The one I bought is 15%. I tried 5% before but that didn't do anything. I am just looking for anxiety relief. If I get relief in that area, that will be very good in terms of coping with all my ailments.

 

You gotta be careful with any isolate you buy. Even CBD products in a brick and mortar store can be mislabeled or polluted.

To give a quick update, due to some adverse effects I experienced today (which weren't recorded in trials at all) and some comments I have read about the particular retailer, I have suspicions that my own CBD isolate which I purchased online contains THC or is tainted with some other chemicals as well. I just ordered a test kit to check whether or not my CBD isolate contains traces of THC. I think I am going to order a small amount of CBD isolate from a high quality source to see if it makes any difference with what I've consumed today. If it doesn't, I might have to lower the dosage of CBD that I take.

Right now my CBD trial is on hold until I've gathered more information. It's a bit of a bummer but we are going to be alright.

 

Amitriptyline?

 

Do you have some citations on this? I've read basically every research paper I know of about benzos and tinnitus.

I take Clonazepam daily at a stable dose because it works best for me that way, but I was benzo free from 2011-2015 (2010 substantial noise trauma & worsening) -- and then from 2015-2017 I used Valium PRN 2-3x a month, it was helpful to some extent, no worsening I am aware of, and I don't know of anything in the literature that makes occasional PRN use dangerous. Heavy binge use is different but that's sort of a lightweight version of an alcohol binge, in terms of neurological consequences.

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.

 

CBD doesn't do anything useful for me, FWIW. THC oil at doses of 100 mg plus give me the best sleep I ever get, but also destroys my dream recall which is a bummer.

Vaping smaller amounts of THC oil helps a lot with sleep onset but I tend to wake up at 2-3AM and either need to just be up at that point, or smoke more THC, so it's not particularly great strategy. With screaming kids and rainstorms and all the other nonsense happening around here, though, happy to make the tradeoffs now in the interests of getting good sleep.

My wife finds CBD helpful but only if mixed with a tiny amount of THC, otherwise she thinks it's basically inactive (and I tend to agree, it seems to substantially modulate the effects of THC but no one has really been able to prove it's psychoactive on its own). I think she takes like, 30 mg of CBD and 2 mg of THC. I will just take 200-300 mg of THC and call it a day, ha. All this stuff is basically free for us because I live in Vermont, grow THC flower and make oil, and organic CBD flower is so cheap here it's almost an after thought.

There's a pretty complex interaction between our understanding of tinnitus and endocannabinnoid receptors. My take on the current data is that in some cases THC may cause temporary spikes in tinnitus, but there's no good clinical data showing a benefit from any dose or dose regimen (THC or CBD). Some people seem to have things that "work for them" but there's no clinical there, there.

We know that sleep heavily impacts tinnitus, so to the extent that cannabinoids (THC or CBD) interact with sleep, there's a positive connection through that mechanism.

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.

Cannabis is the total wild west right now, in some ways worse than it was during total prohibition, because now we have a lot of half-ass "weed bro scientists" making extracts of various things, lying about their test reports, and the FDA has zero ability to follow up on it.

The deeper I got into the periphery of the commercial cannabis world, the more anxious I got about a lot of the stuff that's happening, and at this point, I would basically never consume a cannabis product that isn't self produced, because I control my supply chain from seed to oil and so I know that the only chemicals used are a bunch of animal poop concentrate, ethanol and PH Up. Some random bag, even from a dispensary in a legal state? I can show you a bunch of stories of legal state vendors selling stuff they knew was unsafe, lying about it and getting caught.

Those are just the ones who got caught.

 

I definitely don't have a research paper on this, but I just don't think switching between doses and different types of benzos, starting, then stopping is a good idea. The brain likes consistency.

I for one cold turkeyed Clonazepam in late 2020 off of 0.5 mg/day. I then had a spike from a loud noise in January of 2022. It was laughable compared what followed the day after reinstating Clonazepam and what I hear every other day now. New electrical sounds, noises, screeching, my tinnitus turned ultra-reactive.

For months and months I thought it was the noise exposure (surely didn't help), but then I looked back at my calendar and sure enough, it was the day after I reinstated Clonazepam when all the new noises appeared. Like electricity shocking my brain, and changes every 5 minutes. I don't think this would have happened if I had discontinued responsibly.

I think I am finally seeing progress as far as healing goes as I taper down, but it is hard to tell. I guess I'll only know once I'm off of the benzo completely.

P.S. I am not anti-benzo, if it works for someone then that's great. It unfortunately had a catastrophic effect on me.

P.P.S. I also hate seeing a thread named "Suicidal" being the first thing to show up under the Support forum. Perhaps we could continue this discussion under the "Clonazepam" thread. Thanks.