New Tinnitus Sufferer — I Was Taking Isotretinoin (Accutane) for Acne When It All Began

[Tyler Obermark]

Hi all.

I developed tinnitus around November/December of 2020. I was taking Isotretinoin (Accutane) for acne. My biggest regret of my life. I mean acne was bearable but I figured it would be "nice" to get rid of it. Clearly I cannot single-handedly blame it on this drug. If it was not the drug, it was a helluva coincidence and the cause is still unknown. However, I have mild hearing loss in my left ear in a hissing/high-pitch but not super loud constant tinnitus in my left ear.

I visited the ENT about 3/21 with not much to report other than the mild hearing loss at high frequency (6.8 kHz). Was just told to get used to it basically. I went back today and the hearing loss was slightly worse (5 dB) but they also suggest it could be a test-retest variability. I am glad it has not significantly increased. I had some pretty bad days RECENTLY with just being anxious and frustrated with it. I also am getting an MRI w/ contrast to just make sure nothing is wrong with my brain (hopefully its just wasted time).

My biggest issue is that I feel this was preventable but who was I to think I would develop a RARE side effect from a drug that tons of people have successfully taken? I get that I cannot regret it and beat myself up for it. I am just trying to learn how to live my new life. Mostly how to take tests in silence and not get bothered. I do okay... but I am NOT happy about it. Never had depressive thoughts but sort of have had them slightly now. I am fine for the most part just very anxious but I am now attempting to simply habituate to it and not form such a negative association with it. I was 21 years old when I got it, and I just felt like it was unfair and odd for a young person to have hearing loss, but I am fortunate to still have relatively good health elsewhere!

Just wanted to put a piece of my story out there and maybe collect some tips/strategies or just general thoughts on the matter. Thanks!

 

[Matchbox]

Accutane can potentially cause brain swelling, you'd think that'd be over by now if that's what occurred. Maybe give a trial of a diuretic a shot? It's all I can think of.

Vitamin A has a similar effect to Accutane in high doses. Gets me wondering.

 

[Tyler Obermark]

Accutane can potentially cause brain swelling, you'd think that'd be over by now if that's what occurred. Maybe give a trial of a diuretic a shot? It's all I can think of.

Vitamin A has a similar effect to Accutane in high doses. Gets me wondering.

Doctors (both dermatologist and ENT) just kind of seem very not worried about it. I will admit I got frequent headaches on it and have since. I requested an MRI order to make sure NOTHING is abnormally wrong with my brain (as it is unilateral) and drugs typically affect both ears if it is ototoxic. We'll see what the MRI is, it does suck but oh well. My acne has persisted throughout life and I just wanted to try something, not expecting the rare case that I would develop hearing loss. Oh well, it is life.

 

[NamelessGuest]

Hey Tyler,

Hope things are going well for you. I'd like to offer some advice. If I could go back in time and not ever take Accutane, I would, and I can assure you that the acne is no biggie, will fade, will not hamper your life long-term, even though for many it seems like it will.

That said however, Accutane will hamper your life.

I never had depression or a suicidal thought once, and that all changed with Accutane.

I remember the moment clearly, driving down the road and thinking I should just drive over a cliff, and was like WTF??!! I believe it changed me forever. And not for the better. I would never go back on it if I were you.

I hope the tinnitus will straighten out for you. I developed it from a Wim Hof breathing technique, and that's how I came across your post. Wonder if my Accutane consumption 22 years ago had anything to do with it?

Good luck pal!

 

[Too much noise]

Hi Tyler, I am Bella and have had tinnitus for 40+ years. I can honestly say you will get used to it half the time or more. It's easy for it to be drowned out in noisy environments and you will only notice it in the quiet times.

Start keeping a tinnitus diary. At the end of the day you quickly note the approximate hours you were aware of the tinnitus. Write the food, drinks, and medications you had that day and note your anxiety levels, or stresses. Make notes about methods or therapies you tried that day, such as meditation, yoga, or background sounds. Just quick notes and try to keep negative thoughts away while doing this.

The diary can be used to see any correlation between good days and bad, including medication changes or additions. You can present it to your ENT so she/he can clearly see you do, in fact, have tinnitus, and he may choose to medicate you based on your diary alone. There are plenty of doctors who recognize tinnitus, but are extremely hesitant to give any medical treatment. The added benefit is that when a cure does come along, you will have proof in your medical records of longstanding tinnitus, making insurance coverage of the device more likely.

 

[SarahMLFlemmer]

@Tyler Obermark, I wish I knew how you're doing now!

 

[Markku]

@Tyler Obermark, I wish I knew how you're doing now!

I sent him an email to tell that people are curious, let's see if we can get update!

EDIT:

Tyler already kindly responded, he said he would update all of us soon, maybe already this evening.

 

[SarahMLFlemmer]

I sent him an email to tell that people are curious, let's see if we can get update!

EDIT:

Tyler already kindly responded, he said he would update all of us soon, maybe already this evening.

Thank you so much!