Can Riluzole (Rilutek, Tiglutik, Exservan) Treat, Cure or Prevent Tinnitus / Hearing Loss?

WARNING: I AM NO SCIENTIST OR DOCTOR. PLEASE DO NOT CONSIDER THE FOLLOWING TO BE ALL TRUE. I AM IGNORANT IN MANY WAYS ON HOW THE BRAIN WORKS. I AM JUST PUTTING THIS OUT THERE AND HOPEFULLY WILL GET SOME FEEDBACK. IT COULD BE WAY OFF BASE. NEVER TAKE MEDICINE WITHOUT A DOCTOR'S PERMISSION.

As has been mentioned before, some people say that a "glutamate storm" (excitotoxicity) that can come from benzo withdrawal can cause tinnitus. According to Wikipedia:

Excitotoxicity may be involved in spinal cord injury, stroke, traumatic brain injury, hearing loss (through noise overexposure or ototoxicity), and in neurodegenerative diseases of the central nervous system (CNS) such as multiple sclerosis, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Parkinson's disease, alcoholism or alcohol withdrawal and especially over-rapid benzodiazepine withdrawal, and also Huntington's disease.

Source:
https://en.wikipedia.org/wiki/Excitotoxicity​

Interestingly enough it says hearing loss through noise overexposure or otoxicity can cause excitotoxicity as well. According to Wikipedia:

Excitotoxicity is the pathological process by which nerve cells are damaged or killed by excessive stimulation by neurotransmitters such as glutamate and similar substances. This occurs when receptors for the excitatory neurotransmitter glutamate (glutamate receptors) such as the NMDA receptor and AMPA receptor are overactivated by glutamatergic storm.​

So after doing a little research I found a video of a man explaining how glutamate works:

Astrocytic glutamate uptake

What I wonder and this could be completely ignorant is that if some of these nerve cells are damaged by a "glutamate storm" they might not uptake glutamate and leave the cell overexcited. Also, another idea of mine is that after glutamate reuptake, perhaps some of that glutamate could be converted to GABA during the glutamate decarboxylase process which then could later be used to inhibit neurons. (Not sure if that is the way it works because I am not a scientist, but just putting it out there)

After doing some research I found a drug called Riluzole that stimulates glutamate reuptake:

However, the action of riluzole on glutamate receptors has been controversial, as no binding of the drug to any known sites has been shown for them. In addition, as its antiglutamatergic action is still detectable in the presence of sodium channel blockers, it is also uncertain whether or not it acts via this way. Rather, its ability to stimulate glutamate uptake seems to mediate many of its effects.

Riluzole — Mechanism of Action:
https://en.wikipedia.org/wiki/Riluzole#Mechanism_of_Action​

Interestingly enough it also says:

A number of recent case studies have indicated that riluzole may have clinical use in mood and anxiety disorders. It has been shown to have antidepressant properties in the treatment of refractory depression and act as an anxiolytic in obsessive-compulsive disorder and in GAD.​

This is an off label use, as the main use is to treat ALS. Another disease that may be involved with excitotoxicity - please see third paragraph from the top. I do not know the long term consequences of someone taking this drug. I highly doubt this would get rid of tinnitus but wonder if it would lower it some or if it would help some people with depression and anxiety (or possibly obsessive thoughts?) about tinnitus.

I don't think I have read anywhere of people trying this drug out for tinnitus but I didn't really look that much. Also, this drug is very expensive (at least for me it is) but there is now a generic available. What do you guys think? Is this a stupid idea? Is this idea ignorant? Is it worth a try?

 

@JasonP, how much does the generic version cost?

Do you think a doctor would prescribe it for a tinnitus patient?

What are the bad effects? Usually these drugs have harmful side effects...

 

Unfortunately, in my area the lowest I can get it is around $170 for 60 pills at 50 mg and that is generic!! I wouldn't know the dosage to try. You might be able to get a psychiatrist to let you try it off label for depression, anxiety, or OCD. I found this site where they did some clinical studies on the drug. You can read about the adverse affects or check that Wikipedia article about the drug.

Riluzole - Adverse Effects

You can check this site out and put in your zip code to find out the prices in your area. You might be shocked at the name brand price!

Generic:
http://www.goodrx.com/riluzole?drug-name=riluzole

Brand name:
http://www.goodrx.com/riluzole?drug...antity=60&days_supply=&label_override=Rilutek

I have no delusions that this will cure tinnitus. I was only wondering if it would lower it. Do you think this whole idea makes sense or is it "out there"?

 

Upon brief examination, it seems that the drug prevents secondary neuronal damage due the decreased regulation of glutamate. I could see this working for an acute injury, but what about an injury quite far removed from the inciting event?

 

Yeah, I know exactly what you are saying. Do you think if the neuron was damaged it might help but if it was dead it would not? I wish there was a neuroscientist on here.

 

That would require true regeneration. I'm not sure to what extent damaged nerves can heal themselves.

 

Okay, I actually have multiple types of tinnitus so I don't know how this will work for everyone but I have had some kind of a static like tinnitus from benzos. Well, I had managed to lay off the benzos and take some other stuff and after a month or two of being off the Klonopin, most of the static went away.

Well, something came up a couple of days ago and I took Klonopin again and I guess that is how it came back... maybe it was something else that I also took (Gabapentin, Meclizine, or Cyproheptadine). It sounded the same as the benzo tinnitus.

Well, I took Riluzole (50 mg) early this morning and the static went away in 30 minutes to an hour, then I took some Gabapentin and went back to sleep and the static came back after I woke up. In general the other types of tinnitus were low so I put up with the static today but it's not my favorite sound.

Tonight it started bothering me in a quiet room so I decided to take Riluzole again. That was the ONLY med I took and within 30 minutes to an hour or so the static went away. Riluzole is a drug that works on glutamate.

 

Okay, a little update. I took 50 mg of Riluzole this morning. I hadn't had one in a LONG time. I think I have only one pill left. I took it this morning while lying down. It may have affected me differently if I took it standing up due to my dysautonomia (pulse is higher when standing, blood pressure can change, etc. - I have no idea because I have always taken it in the morning laying down)

Anyways, it may have reduced the small amount of static from my tinnitus but didn't reduce my whistling tone. It was calming and made me a little sleepy. I was laying down on one of my sides and one of my nostrils became clogged up (possibly after I drifted to sleep for a bit, I can't remember). That must have been due to the medication because that isn't normal for me. I think when I flipped to other side, that nostril became clear but the other nostril clogged up.

Other than that and making me sleepy, I didn't notice any other side effects. I think it also had a little anti-OCD affect on me thinking about the tinnitus.

 

I'd like to give another update here on Riluzole. I hadn't had the static tinnitus in a long time. A few days ago I woke up one morning and decided to try Riluzole out. I did not have that static type tinnitus.

Anyways, I took 25 mg of Riluzole. It calmed me down and lowered my heart rate within 15 minutes but made no change in my tinnitus.

The past couple of days I have awakened with static tinnitus and thought that was really weird. Upon doing some research it looks like Riluzole can also work on the GABA receptors so what may be the deal in my case is that sleep plus activation of my GABA receptors gives me static tinnitus. This would also explain a while back why Riluzole lowered my tinnitus until I went back to sleep and then woke up with the static tinnitus again.

Riluzole may not be the answer I was looking for. As it may lower my tinnitus during the day for me but trigger the static the next morning when I wake up. Perhaps low dose Lamictal may be better for me for static type tinnitus.

 

Is there any merit to these two papers?

Does anybody know whether Riluzole is safe?

Has anybody tried Riluzole instead of steroids in such instances?

• Riluzole rescues cochlear sensory cells from acoustic trauma in the guinea-pig
• Neuroprotective effect of riluzole in acute noise-induced hearing loss

 

@FGG, do you happen to know anything about Riluzole and those studies?

Is it a safe compound?

 

I am also interested on Riluzole.

I deal with pre-existing OCD and I need to deal with benzo tolerance/withdrawal. If this can help lower tinnitus and treat the excess Glutamate from long term benzo usage, it sounds like the ideal drug to try.

Any new input on this?

 

Well, I can just say I'm probably not the best person to base an experience on Riluzole because since I originally posted this, I found out I have dysautonomia and I can be very sensitive to medications.

 

What side effects did you experience besides the static noise?

Some people say that they don't like the side effect profile but looking at the Wikipedia page it seems that some of them are pretty normal when you compare with a bunch of meds.

What is the major concern one should have when trying this?

I wonder if it's safe to use while on Sertraline, Pregabalin and diazepam (I intend to taper off).

 

I never really took it long enough to notice any serious negative side effects. Perhaps the most I ever did was two days in a row. I remember taking it a couple of times and it had a calming effect and one time I took it I remember it having an "anti-OCD" effect for me.

 

Anti-OCD seems nice! I am actually considering trying this to substitute SSRIs but I wonder about the long term effects of it...

 

Is Riluzole safe while on Luvox, Valium and Pregabalin? I wonder if I should go after it but I am not sure if there is any theoretical reason to avoid due to the interaction with the other meds.

 

That's a tough question. You could try calling a pharmacist and asking them but even they might not be familiar with it. Perhaps a knowledgeable neurologist might know.

I actually have been thinking about this medication lately again. I know I said earlier in the thread it might not be the drug for me but the benefits that I had on it temporarily could theoretically help me especially when my anxiety gets bad.

However, I don't know the long term affects of it or how it would work if I continuously took it. Also, I am having a hard time finding someone to prescribe it for me. Does anyone know of an online doctor who could prescribe it off label for depression or anxiety?

 

Did you ever get the Riluzole prescribed? I got a call earlier today from a Neurologist's office from a nurse who said that all the doctors there would be uncomfortable prescribing Riluzole for me. It's ironic that a lot of the drugs these doctors want me to take, I can be scared to take but the one I want prescribed, they are scared to prescribe it for me.

 

Never got it prescribed. I kinda gave up on that... it's still very interesting to me but I have 2 worries regarding it: the absence of professionals who could assist me on that and who know the mechanisms of action and its interactions with the drugs I use; the possible "dependency" I might have now playing with the glutamatergic system instead of gabaergic. I still need to taper off my Valium so maybe I try again this option later.

If I wasn't on anything I would totally try it as monotherapy.

 

I totally understand those thoughts! Hopefully you will get better soon.

 

Thank you! What is your current med regimen and how is your tinnitus?

 

Right now I am not taking any medication. I think the main roadblock to me for constantly habituating to my tinnitus is due to my dysautonomia.

I have been trying to strengthen my leg and core muscles and eating more fish. The fish can have a strong anti-depressant effect on me and get my blood pressure up, and improve my vision, but unfortunately, it can also ramp up what feels like adrenaline and I believe it is all due to my condition. This kind of thing I don't think would happen to a normal person. It also seems to have a different affect on me depending on the time of day I eat it.

Since doing these things my tinnitus seems to be really erratic yet "residual inhibition" now seems to be working better than it has in years, maybe ever. I am guessing the exercise is a stressor on my body and that could explain the erraticness of it. I wouldn't say I had anything as bad as 10/10, it's just mainly my mood and habituation to it seems up and down - again I believe due to my dysautonomia.