Hep C Discussion Forum

I was put on Niacin for elevated cholesterol some years ago. The doc said to be sure I got the "no flush/rush" brand or I might have a reaction. Well, I got some one time that wasn't, don't remember how many milligrams it was. Took that crap and in a matter of minutes I was on fire! I had a reaction to that stuff that made me believe I was melting.........ahhhhhh melting........! That's my best Wizard of Oz impression for today. Thankfully my cholesterol  reduced and I didn't need it anymore, but I never took the regular stuff again. Evil stuff it is! Didn't do squat for my tinnitus either. I was exposed to real high doses of Gentamycin antibiotics in the Navy and it undoubtedly is responsible for a lot of it. No rescuing the hearing after that kind of damage. 

Well ... here goes.  Please DON"T run out and buy niacin!! REPEAT AFTER ME ... I will not desperately consume and overdose myself on niacin for fun today! I ONLY present niacin here for DISCUSSION purposes!! 

I find many topics relating to health in general, hepc and "symptoms/afflictions" riveting, tinnitus is one close to my heart (so is diplopia), but, being that the subject de jour is tinnitus (where is Zlick BTW, he also afflicted if I recall correctly), I will now (prolly step in it) and bring up niacin as I have not seen it mentioned here yet (unless I missed seeing niacin mentioned from many dif threads).

I've had ever-increasing variable amounts of tinnitus for at least a couple decades, NOT related to hepc "treatment", but, I do query whether tinnitus is part and parcel of hepc AND therefore part and parcel of exacerbations of with (or resolution after) treatment. Did not know I was HCV for 40+ years, but sure knew I had tinnitus (and now, in retrospect, many other possibly related symptoms as well!).

Chicken or egg, what causes tinnitus, that is the question? There seem to be so many, way too many, variables for causation.

Now, I don't have tig's cruel Pavlovian cricket version - but a bad escalation of tinnitus drove me to a hearing clinic and to an ENT doc a few years back, we discussed causative possibilities - from neuro-oto-toxic damage (he sees a lot of this with chemo pts., certain antibiotics, even overdoses of analgesics I think he said), to people reacting to less exotic poisons such as caffeine and nicotine by exhibiting tinnitus. I went from (the ole days) of just intermittent very hi-pitched electronic squealing whine (much like the high noises they test you with inside that decibel box at the hearing clinic) to nowadays, with the the noises remaining a constant companion. (BTW, while inside that hearing testing box - I was so happy, for about a  minute! - I thought we were really getting somewhere!! - when I blurted out to her in delight - "HEY, YOU FOUND IT!!, lots of those sounds are EXACTLY what I hear!! - except, maybe ... louder, hey, try turning it up a little and I'll let you know which ones and when, OK?". What had driven me to the testing and the ENT was the added joy of having a loud "reverberation" (a kind of mind-boggling "echoing" added to the mix)!! There were NO answers, but thank goodness the reverberating only lasted for about a month or so, then it was just back to my usual noisy ole friend, altho he is more consistently noisier and whinier day by day it seems.

Over the years of periodically googling up info about tinnitus, until very recently, i had NEVER heard mention of people trying niacin to reduce or rid themselves of tinnitus. Odd, when I google it now, I do find it mentioned as a "possible" treatment, but not much data is there. Maybe I just never searched right or looked hard enough before. But still, I do not see a lot of data on niacin use. Until recently NO MEDICAL PERSON had ever brought up the use of niacin to me as something "possibly" to try.

Just recently, someone in the "medical field" gave me this stuff to try (knowing I was HCV and awaiting an unknown drug regime) "said" it would not interact with any regime I was being considered for. Hmm. Not sure at all about taking it, now, or even for a while to come, until I have better health and liver function, and especially after I read the scary liability leaflet inside the package!, but after weighing all the risks I tested it out, just for a few doses, just to see how rough the described "niacin rush" was. Hubby was a willing test guinea pig too (he just happens to have a wee bit of tinnitus as well). In the "head rush" dept. his reaction was mild, mine was a little surprising, included arms and neck). Good reason there are many warnings in the leaflet before you go trying this stuff for yourself. This lipid stuff comes in whopping 500 mg doses (which is LOTS AND LOTS) compared to what we would normally encounter in our diet. The whole thing was rather odd ... that "an almost side" of this "lipid treatment" is something that may also reduce tinnitus? - there is NO MENTION WHATSOVER made by pharma on their drug packaging/leaflet that it is FOR use of a tinnitus problem. Packaged by pharma for one thing (lipids), but offered to me for only a completely dif. reason - tinnitus?

The outcome (of hubby and I giving niacin a VERY short trial) was that "maybe", "perhaps" ever so-slightly, we "might" have noticed the tiniest lessening of the volume or consistent/frequency of noise - so, cannot say it will or will not work for us or anyone - but when I am in better shape, I will definitely think about exploring it further if I find there is no reason not to.

Good reason there is careful instruction about niacin dosing (period) in the leaflet, and, careful instruction about dosing with the "aim" to sleep through what might likely be a disconcerting head rush/flush.

The "exact mechanism" as to why niacin "might" help reduce tinnitus is NOT clear to me. Nor clear are any untoward effects of playing around with niacin to reduce tinnitus.

But I would like to know more from any of you, if you can enlighten me about niacin, I'd appreciate it. Canuck

(arrrgh! I've tried a million ways to paste a scanned pic of the drug package here, am exhausted and throughly defeated by my time-saving device! No pic! It is "500 mg film-coated extended release lipid metabolism regulator". )

 

 

The worst part about Tinnitus for me is that it of course cancels out the frequencies that it is ringing at. That with a little bit of hearing loss makes it hard for someone like me to mix a recording and I do that all the time. I just compensate for it and try to mix on a day when it's less annoying.

** Since I started TX those days are gone but I can wait or compensate again.

I'm sorry to hear that Tig (no pun intended!).

I had tinnitus before tx but when Boceprevir was added to the riba/interf mix it was just like you said. It was louder than any music I could play.

It's been over 2 years since EOT and my tinnitus has gone back to it's pre-tx state of a low hum 24/7, but then that's normal for me.

The only thing that worked and I still use it to go to sleep was create an mp3 of noise.  Some like the white noise, but for me it's crickets, ocean waves and a crackling fire!

If you need the link for the free noise maker online, just let me know & I'll ask my hubby where he got it.

Mary,

It seems to affect a lot of us during treatment. I was on a different protocol, but noticed a severe increase from treatment and it has never gone away. I haven't heard anyone on Viekira mention it lasting long term, so I hope it resolves once you're done. These are the things that can make treatment difficult, but don't let them beat you. I pretended it was my Dragon screaming! Damn thing is still screaming from it's grave though.... 

Does anyone no if vikera can make tinnitus Worce ? I've had tinnitus for 3 years but ever since I started the meds it's just constantly ringing

has anyone tried using a dental guard to ease their tinnitus?

just by chance mentioned it to my dentist today & he told me to start wearing the guard again.

also googled the 2 topics & sure enough it's recommended as well.

in addition the guard really works for the tmj.

sandy,ucbgal

seems ototoxicity properties of interferon are well known, but patients taking interferon rarely notify their doctors about that sx, hence low statistics of tinnitus sx.

I had pre tx really mild high pitched semitonal tinnitus (round 12KHz, both ears), after first interferon shot it soared to new intenisty and i got a different much louder tinnitus ringining on left ear. I am trying to find audiologist with proper equipment (they have here only up to 8KHz) to test how much my hearing is damaged.

I can say level of (new) tinnitus is bit milder in this post tx phase, but it still way louder than pre tx.

During tx, i had ipad with white noise like stuff playing (rain, waterfall,etc) to mask tinnitus. At one stage i had ipad volume on max and my tinnitus was louder than that.

I also have experimented with playing randomly gated (can't be rhytmical pattern) tonal sine waves played at frequency of my tinnitus (or just few Hz below or above)...that would give me few seconds or even minute of tinnitus absence. Just a small shorttime ease. Some of the member here say their tinnitus level decreased post tx, so there might be a chance for some recovery.

You have application called tinnitus tamer that does similar stuff.

Tinnitus is the only thing that keeps me off trying another round of interferon...i really can't afford professionally to increase my tinnitus level.

regarding curing tinnitus, there are some options. Not sure about drugs induced one, as with interferon.

http://www.anm-medical.com/index.php/en

this should be available in USA too. It's not masking tinnitus, yet repairing "stuck neurons" apparently. 2k EUR is the cost in EU. From the user forums, seems it's round 30% effective.

best

Hi Tig56,

Had preexisting tinnitus and got roaring during tx. Had a hard time sleeping and concentrating. At about 3 weeks post tx the ringing is back to pre-tx levels. I chatted with Zlikster briefly about this as it was effecting my hearing of certain notes and frequencies during music practice and playback.

Things seem to have come back to normal with the tinnitus.

Tig56 wrote:

---

Hey DB,

I'm glad you've got the level back to your pre Tx stage. Not perfect but a darn site better than the "on Tx" level! I find it interesting that you used an mp3 to mask the sound. I just read an article that recommended using on of those noise machines that offers white noise, as well as rainfall, crickets etc to reduce your attention to the tinnitus. I recently found several "Apps" available on iTunes for free and at cost  "sound generators" (sound machines), for iPhones and iPads. It works very well, but if have never tried it to reduce the tinnitus. Tonight will be a trial run. I'll let you know how it works. Just hearing something besides this ringing/roaring will be a welcome change! I'm glad that you noticed a good improvement 2-3 month post Victrelis. There is hope that it's going to calm down shortly!

---

The website we used is 'gomix.it' and it's free. You will have to sign up and then download software to use the mixer.

It didn't reduce the tinnitus, just masked it.

Hi Tig:

I had pre-existing tinnitus as well.

I was only on Victrelis for 30 days in March, but my tinnitus increased 100x!  It sounded like it was raining and it definitely roared; never had it this bad. When I slept it was the only relief. Unfortunately getting to sleep was impossible with the ringing going on. My hubby went online and put together an mp3 of sounds to drown out the tinnitus as I fell asleep.  I did not like white noise at all. After a few tries I found the perfect combination/pitch to match the tinnitus: crickets (not one, a whole field) and crashing waves with a fire burning!  I would also walk around with my mp3 player with this noise.

After stopping the Victrelis it took at least 2-3 months before it went back to my pre-existing tinnitus levels, which were bearable.

Now, 35 days after EOT it is at my pre-existing level.

 

 

 

Hi Everyone,

I've been talking with Sandy (UCBGal) about this for sometime and she gave me some information to research regarding exercises that can help minimize tinnitus in some people. Of course it depends entirely on the cause but as I've read, these routines and practices can and do help some people plagued with this annoying and sometimes debilitating condition. As always, if you have serious concerns about your hearing and problems like some of us have mentioned here, it's wise to see an ENT (Ear, Nose and Throat) specialist and an Audiologist for suggestions and diagnosis. 

Here are just a few of the websites that I've found and thought might appeal to the interest of some here. The information is basic to technical but should cover the bases. There are several links listed with these articles for those wanting to do additional research. Good luck and happy hearing folks! Thanks for all the replies, I appreciate your help!

Jaw Exercises for Tinnitus:

http://www.ehow.com/way_5626276_jaw-exercises-tinnitus.html

 

Head, Neck, and Eye Movements That Modulate Tinnitus:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2633109/

 

How to Reduce Tinnitus Naturally:

http://www.wikihow.com/Reduce-Tinnitus-Naturally

hi tig, i've had some ringing in my ears the last few weeks. more so than usual. not a roaring water sound.  i remember someone writing that in the forum last year. was it you?

i'm chalking it up to holiday schedules and eating different foods from the holidays ( i.e. more gluten, sugar, coffee and fat).i feel toxic physically.

i broke out the old champion juicer this a.m. and made my hubby and me a carrot, beet, ginger and apple smoothy. we'll break into the kale and other green things soon too.

i think detoxification is the key to getting rid of these post sx. whatever way you can accomplish that i support you.

i hope it passes soon for you. happy new year friend.

Thanks for the link and information Malcolm. I was hoping that the SFX Would lessen following the cessation of those meds. But darn, they're getting worse in quick order! Is it possible the systems that were negatively impacted by treatment, are having some kind of hyper reaction because they have to recover from those toxic effects? I'm just desiring some hope that the SFX will indeed lessen in severity versus increasing like they are. Like everyone, I just want this over with   #IMPATIENT (lol!)

tig,

my goodness, what other sx will start raging? to be quite honest i don't

even recall reading about it in all the literature we received.

when i googled the info on tinitus i don't remember reading anything about roaring.

i hope you're planning to schedule an appt. w/ an ear nose & throat specialist.

i've heard of people getting their ears cleaned/drained to assist w/ inner ear problems.

please google those exercises i mentioned they do work up to a certain point.

please no more sx for you in 2014!!!!!!

sandy

Hi Tig,

I did have pre-tx tinnitus as well, and it did in fact get noticeably worse during treatment. I can't say that even at 16+ months post-tx that the tinnitus has improved any.

If any of my lingering post-tx issues(eg: muscle & joint aches/pains, tinnitus, anxiety etc) have any chance of improving, it will likely be a slow, long term situation.