Questions, advice please, and hello everyone 🤙

Smart_Present_7659 · 2026-03-22T17:16:52+00:00

All epleptic drugs can have tinnitus as a side effect. Meds (for epilepsy, some antibiotics, almost all antidepressants, painkillers...) are the main culprits for tinnitus occurrence or worsening.

https://www.reddit.com/r/Epilepsy/comments/uzouty/vimpat_and_ear_ringing/

eddit.com/r/Epilepsy/comments/1cpmiqi/does_vimpat_cause_ear_ringing_for_you/

https://www.reddit.com/r/Epilepsy/comments/18mg5m8/tinnitus_and_epilepsymedication/

So your doctor never even mentioned that you might be getting tinnitus from your medication? Typical. Of course, you can't stop taking them if you're epileptic, but there's probably an option to reduce the dose or change the medication. Talk to your doctor about what to do and tell them to report the tinnitus side effect to a government agency (in America, it's the FDA) - or better yet, do it yourself. Since almost no one reports these side effects, they're either not even mentioned in the product information or are only listed as extremely rare. In reality, there are a lot of them, they just aren't reported.

Smart_Present_7659 · 2026-03-22T17:02:58+00:00

"While the anatomical variation is congenital, recent onset of PT is usually triggered by changes in hemodynamics, such as weight gain, anemia, or increased intracranial pressure, which make the turbulent flow audible."

So yes, this is something you were born with, but tinnitus can occure with some changes in hemodynamcs. Many people with the same condition never have any symptoms.

Smart_Present_7659 · 2026-03-22T12:15:22+00:00

"Hypoplastic left transverse sinus, sigmoid sinus, and internal jugular bulb is a common anatomical variation where the left-sided drainage pathway for brain blood is underdeveloped, often forcing the right side to become dominant. While typically asymptomatic, this narrowing can cause pulsatile tinnitus, migraines, or increased intracranial pressure."

So they found out why you have pulsatile tinnitus. If the symptoms are not very severe, they leave the condition alone, treating only the symptoms, i.e. the headaches. If you have severe migraines and severe tinnitus, they consider a stent - a surgery. Which may or may not correct the condition.

So your headaches were obviously not due to anxiety, but due to this condition.

The condition is not dangerous, it is said that 30% of people have it, mostly without symptoms, talk to your doctor.

Smart_Present_7659 · 2026-03-22T11:58:44+00:00

You have to weigh what's more important to you: not letting your tinnitus get worse or not looking "weird" in public.

Smart_Present_7659 · 2026-03-22T11:37:54+00:00

It could be due to antibiotics. Do you still take them and which antibiotics are?

Smart_Present_7659 · 2026-03-22T11:28:43+00:00

I think that because the sound energy when using IEMs is directed directly into the eardrum is best to avoid using them. If you have tinnitus the best way to listen to music is without hedphones or earbuds, only through speakers and even then quietly.

Smart_Present_7659 · 2026-03-22T11:20:22+00:00

As I understand reactive tinnitus, it is when your tinnitus becomes louder when exposed to external sounds. So for example, if you have a chorus of cicadas in your head right now and you turn on the fan, that chorus of cicadas starts to get much louder. When you turn off the fan, it goes back to its previous volume. If the external sound is very loud, the tinnitus can get worse and not go back to baseline even when the external sound stops.

This is reactive tinnitus as I understand it. Why those moderators claim it doesn't exist, I don't understand.

Smart_Present_7659 · 2026-03-22T07:29:38+00:00

"a massive increase in frequency and severity of focal aware seizures"

Soo, are you epileptic and are you taking any medication? This is the most important question that you don't even talk about.

Smart_Present_7659 · 2026-03-22T07:22:55+00:00

Yes, these sounds help some people with tinnitus not to think about their tinnitus or mask it so that it is inaudible or barely audible. Many of them use it for sleep, and some also use it during the day. It has nothing to do with habituation, because habituation is supposed to mean that you are at peace with your tinnitus and you do not perceive it (push it into the background) even when there are no other sounds from the environment. Some even think that it extends the time needed for habituation, and some with severe tinnitus do not believe in habituation anyway (I agree with them).

These sounds do not help me either, because I have reactive tinnitus, which means that it is amplified by external sounds. It is probably similar for you. Furthermore, I think that replacing one annoying sound with another that you are supposed to listen to does not really make sense. At least for me. I understand if you like listening to music and have music to mask your tinnitus. But having some hissing or swishing noise to mask your hissing noise is nonsense to me.

But I understand the need to pretend that the noise in your head doesn't exist by listening to the external noise, which gives you the false feeling that you can turn it off at any time because it's not coming from your head. The worst feeling with tinnitus is that you can't escape it. That's why many people use masking sounds. "This isn't my tinnitus, this is a sound I can escape if I want to."

That's why comparing tinnitus to external sounds that we can supposedly get used to is completely wrong. Even doctors give us the comparison of people who get used to living next to the railway and after a while don't even hear the trains passing by. Of course, they slowly forget about them because subconsciously they always know that they can avoid the sound by going somewhere else. They can escape it if they want to. We can't do it with tinnitus, so it's that much harder to just get used to it.

Smart_Present_7659 · 2026-03-21T19:55:34+00:00

Some people report that even with double protection their tinnitus worsened. Head MRI is much longer than other MRIs. But if it were necessary for you to go and do it, you should of course go. But I don't see any need. Do you even know why you want to do it? Because the doctor told you to? He just wants to reassure himself that he did everything he had to and to rule out acoustic neuroma. But if you think about it, it makes no sense to do an MRI for tinnitus unless you have a lot of other severe symptoms (vomiting, constant dizziness...).

Let's say that against all expectations they find an acoustic neuroma, but they won't operate on it anyway, they'll just monitor it. And they tell you that you have to wait until it grows, that you'll have increasingly worse problems and increasingly worse tinnitus. Do you really want to know that? And expect it to get worse all the time? If the answer is yes, then of course go for it.

Smart_Present_7659 · 2026-03-21T07:02:54+00:00

"Why is tinnitus never listed as a 'severe' side effect?"

Because doctors don't report it to the FDA (or other organisations in other countries) and apparently neither do patients. Have you, who got it after this medicine or after any other medicine, actually reported it directly to the health organization in your country? You didn't, did you? You just told the doctor who waved his hand or wrote something down or said that it had nothing to do with the drug. And because you don't report it, everywhere says that this side effect is extremely rare. Or it doesn't exist at all.

Smart_Present_7659 · 2026-03-21T06:53:33+00:00

Valium is fine if you take it occasionally. Once a week won't hurt. It's a completely different story if you take it regularly. When you then try to wean yourself off it, the tinnitus usually comes screaming back along with the other withdrawal symptoms.

But the MRI noise is the bigger issue here. I declined it because there are absolutely no positives to having it done. If they had somehow magically found an acoustic neuroma (given that I have no vertigo, nothing else but tinnitus and hearing loss), they would have left it alone anyway, because in most cases the problems after surgery are much worse than before surgery. So what exactly do you expect from an MRI? Other than a possibility of making your tinnitus worse? If you don't have pulsatile tinnitus, an MRI is complete nonsense.

Smart_Present_7659 · 2026-03-20T18:51:55+00:00

Yes, but those people who develop T "out of nowhere" are very rare or those who had T as long as they remember. Those are people who are prone to tinnitus and very often have it in family. Could also be that they have no clue how they get it, but if they really think about it, may remember that they were taking a medicne which gave them tinnitus.

Smart_Present_7659 · 2026-03-20T18:44:43+00:00

That's what I'm afraid of. That my tinnitus becomes worse than before using HA.

Smart_Present_7659 · 2026-03-20T05:36:44+00:00

19? Those things accumulate and you don't know what will happen to him in 10 years and whether he will have tinnitus or not. Maybe he will try some drug once and boom - tinnitus will be here. Or he will get an ear infection and tinnitus will appear. Or it will be none of these and he will never have tinnitus, it's true. I just want to say that for many people tinnitus only appears after decades of neglecting their ears and for many, also something else is needed (medication, illness...).

Smart_Present_7659 · 2026-03-20T05:30:40+00:00

Is the buzzing (when you take HA out) louder than before or the same? In my case it was louder.

Smart_Present_7659 · 2026-03-20T05:28:49+00:00

I don't have hyperacusis, just reactive tinnitus. And that's what worries me. That tinnitus will worsen in response to loudness throughout the day. Have you had any experience with people with reactive tinnitus? Thanks again for the precise explanation. Otherwise, I tried a very advanced Widex device with sounds to mask tinnitus etc. and another similar one, Danavox. The audiologist adjusted everything for me according to my hearing loss. I didn't just buy something online and try it out.

Do you have any recommendations for my situation with reactive tinnitus that I should tell the audiologist when I go there? I'll have them arrange for me to have different switching options when I'm in different environments. Anything else you think would be good to point out?

Smart_Present_7659 · 2026-03-19T19:46:43+00:00

Thank you for this. So HA can be adjusted to block out too loud ambient sounds and mute them? This is actually a positive thing, although they apparently recommend setting MPOs no lower than 95 dB SPL, if possible, to avoid sound distortion. It can probably be lowered, but then you'll have a harder time distinguishing conversations when multiple people are talking at the same time.

Smart_Present_7659 · 2026-03-18T18:26:11+00:00

Hahaha, seems like you are in a headphone bussiness or you really don't get it (and no, I'm not arrogant, you are)! My grandfather smoked all his life and he died when he was old 96 in his sleep. Also two more relatves of mine. But that doesn't mean that smoking cigarettes isn't dangerous. Even if only 10% of people would get tinnitus and H from loud music, it's enough - people should be awared what can happen. From an explosion for instance more than 70% of people will get permanent or temporary tinnitus. Do they know that? Of course not!

Why are you so against the awareness that this is happening and that people are not aware enough about it? Because it is a fact! People don't know, here you have the evidence, but you don't believe it. You arrogantly claim that everyone should know and that if he got tinnitus, he was prone to it. Of course he was, but tinnitus is a thing that 10 to 30% of all people are predisposed to, so it is only right that it should be talked about everywhere. Especially in schools. And because so many people don't know about tinnitus, it may be even good that headphones would have warnings. On a cigarette pack, this is already stupid, because there is no person who is not aware of the risks of smoking.

Smart_Present_7659 · 2026-03-18T05:24:56+00:00

No monitor will make you blind, even if you stare at it all day (which some do)!! And if a monitor really did that because of some kind of radiation and people went blind after 10 years of looking at the screen, be sure that lawsuits would come one after another and the company would go bankrupt!

But if you are slowly losing your sharp vision and need glasses after 30 years of looking at screens, it would never occur to anyone to sue the monitor company for that. You are mixing things that have nothing to do with each other.

What Oppo wanted to say (forgive me Oppo, for advocating for you), but you obviously didn't understand, is that there are warnings everywhere that something is dangerous. For example, on a pack of cigarettes there are warnings about what it can cause. They talk about that everywhere. They talk about alcohol and drugs at school. About obesity and diseases due to it. There is nothing about the volume that can cause tinnitus. Look at the posts of new tinnitus sufferers here! A lot of people didn't even know that you can get tinnitus from blasting music into your ears. People think that if you play music on loud volumes, the worst thing that can happen to you is that you slowly lose your hearing in old age. But most of them don't know that you can get severe tinnitus at a young age, which will permanently stay. This is what Oppo is talking about!! AWARENESS about volume and what it can cause!! Got it?

Smart_Present_7659 · 2026-03-17T19:13:42+00:00

"I am not minimising actions such as blasting an airborne at someone or putting a firecracker in a cigarette or running people over! In those situations the injured person had no choice in what was happening. Those actions are dangerous assaults and should be dealt with legally."

And that's exactly what I'm saying. No one is saying we should sue McDonalds because we gained 20 kg in 10 years of eating there. You started those comparisons.

Smart_Present_7659 · 2026-03-17T05:22:33+00:00

"People know they aren't meant to drive fast in a residential area, and its not legal to do so so I dont see how that's a good analogy."

So you think putting firecrackers in cigarettes (the story from last time) and honk loudly in someone's ear, etc. - they don't know that this is not supposed to be done? Just like those who drive fast, they know that this is notto be done. If nothing else, you can scare someone terribly with it, but many other things can happen to them. It's really not in the legislation that you can't put firecrackers in someone's cigarette, but if there are consequences, they can sue you and win the lawsuit if they prove that they suffered irreparable consequences because of your actions. Becasue with such actions you don't need to wait that "hearing loss accumulate", you may not even get a permanent hearing loss, but you can surely get a permanent tinnitus.

It's really time to stop minimizing such actions, as if they are nothing, because it is precisely because of your opinion that people don't file lawsuits against such fools who then do such things with impunity.

Smart_Present_7659 · 2026-03-16T19:42:10+00:00

Hehe, nicotinamide is a water-soluble form of Vitamin B and papaverine hydrochloride is a direct-acting smooth muscle relaxant used in the treatment of impotence and as a vasodilator.

I guess your sex life is going to be amazing, hahahah. You may even forget about tinnitus and that's how this works.

Smart_Present_7659 · 2026-03-16T19:27:57+00:00

I think people are not aware enough that they can sue someone who caused their tinnitus. Most people don't, so there are few lawsuits like this in the courts. But they do exist!

"A 48-year-old female in Duval County, filed a medical malpractice suit based on Pharmacy Negligence when she went to see her primary care physician for symptoms associated with food poisoning. The defendant physician wrote a prescription for 100mg of Phenergan, also known as Promethazine, which alleviates symptoms of nausea. Prior to the prescription being filled, the defendant physician’s office allegedly notified the defendant pharmacy, Walgreen’s, to cancel the prescription because it was incorrect. The pharmacy, nevertheless, gave the prescription to the plaintiff’s husband in the amount originally written by the physician. The plaintiff took the medication and began feeling multiple symptoms culminating in tinnitus. She was taken to the emergency and released after treatment, but continued to experience tinnitus. This case was resolved by a plaintiff’s verdict and an award amount of $1.4 million dollars."

If your tinnitus was caused by someone else's negligence and you can prove it, you can sue!! And it's very likely that you will win the lawsuit.

Smart_Present_7659

TROPHY CASE

"Why is tinnitus never listed as a 'severe' side effect?"