Tinnitus Keeps Worsening on Its Own: Why?

[UKBloke]

I wish no one had ever to know this.

Me too, man. It's frickin' rancid.

Re the more herbal approach above. After a bit of research I decided to add quite a bit of spinach and ginger to my diet. With the spinach, I wilt a big bag of the baby leaf stuff then divide it into 3 x portions (these portions can be frozen for later use). With the ginger, I steep 3 x big thumb sized peeled chunks in hot water for 15 minutes. I cool the water then divide it into 3 x cups that I store in the fridge.

The regime has been, one day, gobble a portion of spinach (defrosted of course) and the next day, neck a glass of cold ginger juice. I don't know whether it's a placebo effect or not, but it has helped me take the edge off, especially when this bugger is really howling.

 

[Raphael7713]

Could be stress, anxiety, depression, lack of sleep or water, too much caffeine, sugar etc. It happens to most of us from time to time. Its important you relax (I know it's easier said than done) and let your system calm down, and you will find your tinnitus will calm down as well.

 

[FGG]

Thank you, FGG. I appreciate your thoughts and your encouragement.
I thought about this a lot. I can't decide what is the best guess on what is going on.
Pregabalin withdrawal increases glutamate, we know that much. This seems to explain why staying on a low dose or even tapering does not seem to help. But why does the tinnitus worsen even when staying on a constant dose? Is the drug doing damage and I should stop it completely? If I do get to zero the tinnitus will go even worse, maybe much worse, and probably I won't be able to withstand this as I struggle now already. Alternatively, I could go up a lot, say 300mg, and see if the tinnitus goes into remission, but then I risk prolonged exposure to the drug with all the other problems on memory, cognition etc, and it's not even guaranteed to work, tinnitus could still worsen, especially if I am in tolerance. I'm in a deadly trap, but I need to pick one direction. I don't know which one. My life is ending. And finally there is the possibility that pregabalin is not really the culprit, it might be something else, there are other people whose tinnitus keeps worsening even without drugs being involved.
I simply don't know what to think, and doctors don't help.
Most doctors I talked to doubt pregabalin is doing damage, as they say I would have go tinnitus much earlier if it were due to pregabalin, not after six months of usage. The tinnitus started clearly with a cold, but then the role of the drug is unclear, it might have exacerbated it or it might have worsened on its own. I am in a very dark place and I don't know what to do next or how I will take care of my family. I will put my hope in the treatments coming up but I need to improve short term or I won't make it.

I would put my hope on the drugs but these are a few years away at best. I don't have the strength to resist that much if I don't have any improvement.

My own thought on this is that with a lot of GABA receptor agonist drugs, the tinnitus doesn't happen for months to years because receptor tolerance (which takes time to occur) is what is driving the problem.

This is why benzos often help people at first or if taken sparingly but over a long enough time (or especially if using more short acting or inappropriate withdrawal), they can make tinnitus much worse.

Your doctor assumes since you didn't have an immediate reaction, it's not ototoxicity. This is wrong. Even with more "classic" ototoxins damage accumulates over time (e.g.. Cisplatin damage sometimes doesn't show up for months, too).

It is possible that your tinnitus is unrelated (e.g.. Started with the upper respiratory virus) but even if that were the case, the GABA/glutamate system still has large effects on severity. If it definitely started with a "cold" though, it might be worth getting EBV titers, etc. There is a doctor who studied anti viral therapy in Meniere's and found if treated early, patients were even getting hearing function back (look up Dr. Gacek on PubMed or I can try to find you the reference). I think viruses might play a role in some of the idiopathic (even non Meniere's) cases. I have no idea if that applies to you personally or not.

As far as the Pregabalin, why were you put on it?

I would defer to people who have had to get off Benzos for advice. Something like the Ashton Manual for Pregabalin doesn't exist but maybe a neurologist might know. Part of the problem is that Pregabalin has a shorter half life and unlike with benzos, you don't have the option of switching to a longer acting one while you start to withdrawal your receptors. @Star64, any advice? You seem to know a lot about this process from other posts.

I think the first step is going to be a second opinion. Maybe even see a neurologist if you haven't.

Your idea of trying to take a larger dose to test it seems logical but you would be essentially giving your receptors a quick withdrawal again afterward. It might be useful to know but also could make it worse.

I don't have much more to add but there is a ton of literature on GABA/Glutamate and tinnitus that maybe you could bring your doctor. At least get him/her to look into those possibilities and incorporate that into a plan, if needed.

Sorry you are going through this.

 

[Hotspur2931]

It's impossible for me to stop noticing it or letting it slide on the background because it is too high pitched and loud, too intrusive. I cannot manage this level.

Hang in there. Lots and lots of stories on here of people managing to habituate to highly intrusive tinnitus.

 

[all to gain]

@Chinmoku
Anything that upsets the GABA/Glutamate ratio can affect tinnitus.

Does Fluoxetine/Prozac upset this ratio? Would trying to come off of it be good, i.e. for my tinnitus?

Sorry to hijack the thread, i should put it in the AS thread really.

 

[FGG]

Does Fluoxetine/Prozac upset this ratio? Would trying to come off of it be good, i.e. for my tinnitus?

Sorry to hijack the thread, i should put it in the AS thread really.

It appears to:

https://www.ncbi.nlm.nih.gov/pubmed/31480244/

Trying to come off of it may make it worse if not done properly. It can also make psychiatric symptoms way worse than baseline if not done properly. Don't try to do this without a specialist if you do.

 

[Bobby Sinatra]

I know mate, that hiss from hell.

If robots ate electronic bacon for breakfast, the amplified sound of it frying in the electro-microwave pan... that's what that shit sounds like.

 

[all to gain]

It appears to:

https://www.ncbi.nlm.nih.gov/pubmed/31480244/

Trying to come off of it may make it worse if not done properly. It can also make psychiatric symptoms way worse than baseline if not done properly. Don't try to do this without a specialist if you do.

Specialists in this are few and far between. Certainly wouldn't go to any GP or/and most psychiatrists. I was thinking of taking 2 years to do it. Very slowly; especially when it gets down to 5 and below per day.

Most sources say ADs make tinnitus worse (as well as causing tinnitus in the first place).

It's an effed if I do, effed if I don't situation.

 

[Chinmoku]

@Chinmoku why were you prescribed pregabalin in the first place?

I was given it for nerve pain and anxiety

Could be stress, anxiety, depression, lack of sleep or water, too much caffeine, sugar etc. It happens to most of us from time to time. Its important you relax (I know it's easier said than done) and let your system calm down, and you will find your tinnitus will calm down as well.

I can relax my body very effectively but this horror keeps worsening regardless. It does not fluctuate at all. It is steady, worsening torture 24/7 and it does not respond to anything I tried. Frankly, I don't buy the stress explanation. There is something else at play here.

My own thought on this is that with a lot of GABA receptor agonist drugs, the tinnitus doesn't happen for months to years because receptor tolerance (which takes time to occur) is what is driving the problem.

This is why benzos often help people at first or if taken sparingly but over a long enough time (or especially if using more short acting or inappropriate withdrawal), they can make tinnitus much worse.

Your doctor assumes since you didn't have an immediate reaction, it's not ototoxicity. This is wrong. Even with more "classic" ototoxins damage accumulates over time (e.g.. Cisplatin damage sometimes doesn't show up for months, too).

Good point. This is a serious possibility

It is possible that your tinnitus is unrelated (e.g.. Started with the upper respiratory virus) but even if that were the case, the GABA/glutamate system still has large effects on severity. If it definitely started with a "cold" though, it might be worth getting EBV titers, etc. There is a doctor who studied anti viral therapy in Meniere's and found if treated early, patients were even getting hearing function back (look up Dr. Gacek on PubMed or I can try to find you the reference). I think viruses might play a role in some of the idiopathic (even non Meniere's) cases. I have no idea if that applies to you personally or not.

I had antiviral medication in the early stage but it did nothing. I'll look into this more

I would defer to people who have had to get off Benzos for advice. Something like the Ashton Manual for Pregabalin doesn't exist but maybe a neurologist might know.

I corresponded with a few prominent psychopharmacologists and saw a couple of specialists but they said that unfortunately there is not enough data to help me. Nobody seems to know this. We have a loose similarity to benzos to guide us and nothing more.

Part of the problem is that Pregabalin has a shorter half life and unlike with benzos, you don't have the option of switching to a longer acting one while you start to withdrawal your receptors. @Star64, any advice? You seem to know a lot about this process from other posts.

Yes, it's so tough to withdraw from this drug. I have been in contact with Star64, she has been helping a lot

I think the first step is going to be a second opinion. Maybe even see a neurologist if you haven't.

Believe me I saw so many doctors. No one knows, that is where part of my desperation stems from.

Your idea of trying to take a larger dose to test it seems logical but you would be essentially giving your receptors a quick withdrawal again afterward. It might be useful to know but also could make it worse.

I don't have much more to add but there is a ton of literature on GABA/Glutamate and tinnitus that maybe you could bring your doctor. At least get him/her to look into those possibilities and incorporate that into a plan, if needed.

Sorry you are going through this.

Sounds very optimistic. My GP does not know anything. I consulted many specialists, mentioning the glutamate issue, and they don't have a clue. I'm desperate.

 

[Chinmoku]

Hang in there. Lots and lots of stories on here of people managing to habituate to highly intrusive tinnitus.

I can believe that, maybe , if it stops worsening. I struggle now, a lot, and the deteriorating trend continues.

Specialists in this are few and far between. Certainly wouldn't go to any GP or/and most psychiatrists. I was thinking of taking 2 years to do it. Very slowly; especially when it gets down to 5 and below per day.

Most sources say ADs make tinnitus worse (as well as causing tinnitus in the first place).

It's an effed if I do, effed if I don't situation.

Psychiatrists are quick to put you on these drugs but then when you have a problem most of them deny withdrawal and attribute your problem to returning anxiety/depression etc and want you to up your dose again. If I could time travel and talk to my past self I would tell him to stay away from psychiatric and neuro drugs as much as possible.

 

[Momme]

@Chinmoku

Disclaimer: I'm not an MD but I do have a medical background and have read obsessively about the auditory system since my own problems started.

My two cents: it seems this might have something to do with the fact that pregabalin specifically is a GABA analogue drug. I think @AVIYT alluded to this a bit.

Anything that upsets the GABA/Glutamate ratio can affect tinnitus.

If you haven't seen it, this link has a nice schematic showing how exactly glutamate works in the cochlear nerves.

https://researchfeatures.com/2018/05/01/unravelling-cochlea-understand-hearing-loss/

It turns out, though, that too much or (less commonly) too little glutamate can cause hearing issues. This is one reason chronic benzo use (and especially improper withdrawal) can wreck havoc on the auditory system, the receptors can get desensitized over time (hence "tolerance") and the body suddenly as the physiological equivalent of excess glutamate again.

The research indicates that these imbalances damage through neuro-excitation. The good news is that this balance can be eventually be restored though it sometimes takes years in extreme cases (after chronic benzo use or withdrawal, for instance).

The bad news is neuro-excitation is one mechanism synapses are structurally damaged. When a successful synaptopathy drug comes out (e.g.. Intratympanic BDNF, PIPE-505 etc), I have no doubt this should address that, too, though.

You mentioned hearing loss above 8000 Hz, you may be a good candidate for FX-322, too. They mentioned at their last Q and A that they suspect the synaptopathy at the site of new hair cell growth will be improved because of the new synapses that attach to the new hair cells.

Either way, hang in there. There are therapies that will help many of us soon and with time, some of your glutamate imbalance can correct in the meantime.

Are there any foods that upset the GABA/Glutamate????

 

[MindOverMatter]

@Momme Yes, lots of...

https://nutritionforseizures.com/low-glutamate-foods-can-reduce-the-excitotoxicity-in-the-brain/