Recommendations for a Combination of Medications to Treat Noxacusis?

[haha ear go eeee]

Hey everyone, I hope you're all having a low-pain day today. I'm planning on trying some medications soon-ish for my noxacusis and tinnitus. I would like some suggestions.

So, I primarily have middle ear noxacusis, though I feel as if I'm getting inner ear symptoms lately because of my landlord's A/C unit. I have loudness hyperacusis as well. I also have quite a few different pulsating tones in my ears with an underlying static-hiss sound. The tinnitus is quite reactive, and it often distorts the sound of appliances running.

I'm currently taking a low dose of CBD isolate for my MCAS symptoms, around 20 mg per day. I might go lower just in case it's spiking my tinnitus.

I'm interested in a couple of different medications for this. One being Keppra (Levetiracetam) or a similar drug. There are stories of it reducing loudness hyperacusis and reactive tinnitus, and I want to see its effect on noxacusis.

Another medication I would like to try is Ivabradine. It is an HCN2 ion channel blocker, and is the subject of a promising piece of tinnitus research. It acts on the protein found in the inner ear and may help with noxacusis, as this specific protein is found in chronic neuropathic pain.

Finally, if the CBD isn't spiking my tinnitus, I would like to try Epidiolex, which is just pure Cannabidiol without any chance of THC content. This was found to be a Kv7.2 and Kv7.3 opener at high, consistent dosages.

Another thing is, I don't want to try all these medications by themselves, especially Epidiolex as I personally don't believe opening those two channels will be enough in combating the symptoms of noxacusis.

What would you guys suggest? How should I combine these three? Should I go with Epidiolex and Keppra or something else?

Let me know what you guys think!

 

[StoneInFocus]

I'm currently taking a low dose of CBD isolate for my MCAS symptoms, around 20 mg per day. I might go lower just in case it's spiking my tinnitus.

I think 20 mg CBD isolate orally is a placebo dose. I've tried many grams of cannabidiol without much effect on tinnitus or hyperacusis.

I'm interested in a couple of different medications for this. One being Keppra (Levetiracetam) or a similar drug. There are stories of it reducing loudness hyperacusis and reactive tinnitus, and I want to see its effect on noxacusis.

I think Keppra is a good pick if the side effects won't be too severe for you.

Another medication I would like to try is Ivabradine. It is an HCN2 ion channel blocker, and is the subject of a promising piece of tinnitus research. It acts on the protein found in the inner ear and may help with noxacusis, as this specific protein is found in chronic neuropathic pain.

I think Ivabradine will be a hit or miss in regards to its noxacusis alleviating properties, but it's definitely an exciting option to try. I also think its ability to lower blood pressure can (temporarily) worsen tinnitus perception.

Finally, if the CBD isn't spiking my tinnitus, I would like to try Epidiolex, which is just pure Cannabidiol without any chance of THC content. This was found to be a Kv7.2 and Kv7.3 opener at high, consistent dosages.

I don't think it will do much for noxacusis on its own, but maybe in combination with the aforementioned drugs it will.

What would you guys suggest? How should I combine these three? Should I go with Epidiolex and Keppra or something else?

Let me know what you guys think!

I think a doctor will never just put you on a mixture of these drugs the first instance you meet him or her. He will likely put you on each of these medications separately to see how they affect you.

My advice to you, if you are really serious about this, would be to find a doctor that is willing to prescribe at least one of these drugs in the first place, and then move forward from there.

Can you get an Epidiolex prescription?

Don't forget there is very little data on what medication helps with noxacusis and what does not as these drugs have been investigated for different illnesses.

I don't mean this in a bad way, but if you are already worried about Ambroxol being ototoxic or 20 mg of cannabidiol causing a tinnitus spike, are you sure you will be able to handle the stress of taking multiple drugs at once?

I think above anything you need to approach this issue with a calm mind.

Best of luck.

 

[haha ear go eeee]

I think 20 mg CBD isolate orally is a placebo dose.

Me too. Honestly the noxacusis and tinnitus spike is probably due to the undetected noise exposure more than anything, it's just that I started the CBD isolate at the same time as the noise exposure started so I originally thought I was experiencing ototoxicity.

I think Keppra is a good pick if the side effects won't be too severe for you.

So I'm seeing some behavioral issues listed in the side effects and I'm also seeing some tinnitus spikes, though I'm not sure if that's too common. I'll ask Neil Bauman about it.

I think Ivabradine will be a hit or miss in regards to its noxacusis alleviating properties, but it's definitely an exciting option to try. I also think its ability to lower blood pressure can (temporarily) worsen tinnitus perception.

Same! I'm more inclined to try this one first under a cardiologist's or neurologist's supervision as that research looks super promising. I've also been noticing some POTS symptoms along with my MCAS, so I'll see if I can get a diagnosis and hopefully be able to get it prescribed. I've also been having hypertension symptoms, so maybe lowering my blood pressure might help with both.

I don't think it will do much for noxacusis on its own, but maybe in combination with the aforementioned drugs it will.

Agreed. Your experience with it kind of pulled me more towards the theory that some potassium channel openers aren't enough to eliminate the setback function. I'd add it to Keppra or Ivabradine.

I think a doctor will never just put you on a mixture of these drugs the first instance you meet him or her. He will likely put you on each of these medications separately to see how they affect you.

For sure, I was planning on adding one medication at a time. Maybe starting with Ivabradine and seeing what that helps, then trying to add another. I'd probably end up lowering all the dosages once I find out what the specific medication does and try to work out a plan to use it for long term.

Can you get an Epidiolex prescription?

It looks like it's going to be available here in October, that's when the decision on the application to become a prescription drug should be made. I'll see if a neurologist can prescribe that when it comes out here. Alternatively, I can go through our access program and obtain medications that aren't available here if it takes too long.

I don't mean this in a bad way, but if you are already worried about Ambroxol being ototoxic or 20 mg of cannabidiol causing a tinnitus spike, are you sure you will be able to handle the stress of taking multiple drugs at once?

Once I go back to a baseline tinnitus, for sure. I'll keep a detailed log while I'm on these medications just to be safe. To be completely honest, I'm already getting to the point where one foot is out the door. I know people generally recommend that you wait it out and don't take any medications for it, but that's kind of how we end up being in the dark about this condition. Also, I know for a fact I'm not going to have the strength to be able to wait this out, there's no telling that doing absolutely nothing will improve my LDLs anyway.

I think above anything you need to approach this issue with a calm mind.

For sure, thank you. What's your next step in terms of medications? Are you thinking about trying another and seeing if it helps? Any ones you're looking to combine?

 

[StoneInFocus]

What's your next step in terms of medications? Are you thinking about trying another and seeing if it helps? Any ones you're looking to combine?

Next week (let's call it week 1) I think I'm going to ask the doctor to up my Carbamazepine dosage. Depending on the results in week 1, I'm going to either continue with Carbamazepine or try another drug in week 2. From week 2 until week 4 I will opt for Nifedipine if the doctor allows it, or else Pregabalin (I'm not really sold on Pregabalin myself, the doctor just really wants me to try it). Week 4 until week 6 will probably be either Pregabalin or Nifedipine. 6 to 8 maybe Keppra or Ivabradine.

Considering medication combos, it depends a lot on how well I tolerate each of the individual drugs and to what extent my doctor wants to cooperate. But it will in all likelihood be a drug mentioned above combined with Flupirtine and Ambroxol, plus maybe Ivabradine. As a matter of fact I've already taken Carbamazepine together with Flupirtine and Ambroxol.

Besides taking medicines I will also pay extra attention to my health the following months.

I really hope my current worsened state of tinnitus and hyperacusis is not due to the Carbamazepine. I guess we'll find out next week.

Let's beat this b*tch.

 

[haha ear go eeee]

Next week (let's call it week 1) I think I'm going to ask the doctor to up my Carbamazepine dosage. Depending on the results in week 1, I'm going to either continue with Carbamazepine or try another drug in week 2. From week 2 until week 4 I will opt for Nifedipine if the doctor allows it

Why are you trying out Carbamazepine? Also, does Nifedipine act differently than Keppra? My understanding was it acts on the same calcium channels.

But it will in all likelihood be a drug mentioned above combined with Flupirtine and Ambroxol, plus maybe Ivabradine.

Flupirtine is a potassium channel opener, eh? Do you know which channels specifically? Is it less potent than Retigabine was? Also, I know Ambroxol helps with the burning pain, but why specifically? Do you believe it suppresses the setback function or just dulls the pain?

As a matter of fact I've already taken Carbamazepine together with Flupirtine and Ambroxol.

Oh! How are you finding that combination?

I really hope my current worsened state of tinnitus and hyperacusis is not due to the Carbamazepine. I guess we'll find out next week.

It's so hard to tell. It feels like you need a controlled environment to make sure it's the medication worsening it rather than environmental factors.

Let's beat this b*tch.

Right on. I feel like the community is slowly closing in on something here, I can feel it.

 

[StoneInFocus]

Why are you trying out Carbamazepine? Also, does Nifedipine act differently than Keppra? My understanding was it acts on the same calcium channels.

I'm trying Carbamazepine because @grate_biff said it helped his noxacusis by about 70-80 %.

Considering the difference between Nifedipine and Keppra, they are both L-type calcium channel blockers, however Keppra also blocks the synaptic vesicle glycoprotein 2A, so that's another possible mechanism why it could help with noxacusis.

If it were up to me, I'd try Keppra but the doctor does not allow it (yet).

Flupirtine is a potassium channel opener, eh? Do you know which channels specifically? Is it less potent than Retigabine was? Also, I know Ambroxol helps with the burning pain, but why specifically? Do you believe it suppresses the setback function or just dulls the pain?

Flupirtine seems to act mainly on Kv7.2/7.3. I don't know how it compares to Retigabine in terms of potency.

I'm not really sure why Ambroxol helps with the burning pain. A possible reason could be its ability to antagonize the P2X2 receptor, thereby, among other things, preventing the closure of the potassium channels of type II afferents and hyperpolarizing the membrane potential. Or it could just be its sodium channel blocking properties, or an interplay of both.

Oh! How are you finding that combination?

It made me feel fuzzy but didn't do anything special for my tinnitus or hyperacusis.

It's so hard to tell. It feels like you need a controlled environment to make sure it's the medication worsening it rather than environmental factors.

Yes, and there are so many (hidden) factors that could influence one's tinnitus.

Right on. I feel like the community is slowly closing in on something here, I can feel it.

Let's hope for the best.

What would you guys suggest? How should I combine these three? Should I go with Epidiolex and Keppra or something else?

I am thinking about the possibility of using supplements in combination with these drugs. It's a bit of shame that NAC can cause the release of histamine from mast cells, otherwise it would have been a good option to take, if there weren't any adverse interactions with the medication.

 

[chinup]

It's a bit of shame that NAC can cause the release of histamine from mast cells, otherwise it would have been a good option to take, if there weren't any adverse interactions with the medication.

Can you elaborate on this? I took NAC about a week ago and felt like I was about to die. Had a severely adverse reaction to it.

I used to take it almost daily with no real issues other than some restless legs at night. However, lately I've been reacting weird to lots of different things in a way that suggests I might have a histamine intolerance.

Is it possible this weird reaction to NAC could actually be a sign of mast cell activation syndrome?

 

[haha ear go eeee]

Can you elaborate on this? I took NAC about a week ago and felt like I was about to die. Had a severely adverse reaction to it.

I used to take it almost daily with no real issues other than some restless legs at night. However, lately I've been reacting weird to lots of different things in a way that suggests I might have a histamine intolerance.

Is it possible this weird reaction to NAC could actually be a sign of mast cell activation syndrome?

I had a weird reaction to NAC as well! It would aggravate my asthma despite it being reported to help. A few months later, I strongly believe I've developed a mast cell disorder too.

I'm actually starting to think it may be connected. The symptoms of it seem similar to my hyperacusis, and the release of ATP is prevalent in both conditions.

 

[StoneInFocus]

Can you elaborate on this? I took NAC about a week ago and felt like I was about to die. Had a severely adverse reaction to it.

I used to take it almost daily with no real issues other than some restless legs at night. However, lately I've been reacting weird to lots of different things in a way that suggests I might have a histamine intolerance.

Is it possible this weird reaction to NAC could actually be a sign of mast cell activation syndrome?

All I know is that NAC can cause histamine secretion from mast cells and that some people have reported histamine intolerance symptoms after taking it.

I think it's best to consult a doctor whether you have MCAS or not.

 

[haha ear go eeee]

I'm trying Carbamazepine because @grate_biff said it helped his noxacusis by about 70-80 %.

Oh nice! I wonder what it actually does to help noxacusis? Any major side effects so far?

Considering the difference between Nifedipine and Keppra, they are both L-type calcium channel blockers, however Keppra also blocks the synaptic vesicle glycoprotein 2A, so that's another possible mechanism why it could help with noxacusis.

Oh, neat. So it does something with the synapses?

If it were up to me, I'd try Keppra but the doctor does not allow it (yet).

That's very annoying. I'm not sure why some doctors are so hesitant with prescribing some of these medications when the theories are sound. Hopefully, you can try it out soon.

Flupirtine seems to act mainly on Kv7.2/7.3. I don't know how it compares to Retigabine in terms of potency.

I'm a little bit worried about visual snow as a side effect from the potassium openers. That's why I'm leaning a little more towards CBD as an opener, I don't believe it touches the other channels to a significant degree.

I'm not really sure why Ambroxol helps with the burning pain. A possible reason could be its ability to antagonize the P2X2 receptor, thereby, among other things, preventing the closure of the potassium channels of type II afferents and hyperpolarizing the membrane potential. Or it could just be its sodium channel blocking properties, or an interplay of both.

I might have to include it. I have a stash here that's just sitting there. I'm just a little worried about dulling the pain rather than targeting the setback mechanism. Do we know of any others that antagonize the P2X2 receptor but don't block the sodium channels?

It made me feel fuzzy but didn't do anything special for my tinnitus or hyperacusis.

I'm sorry to hear that. Have you found one particular medication that works the best for your symptoms so far?

I am thinking about the possibility of using supplements in combination with these drugs. It's a bit of shame that NAC can cause the release of histamine from mast cells, otherwise it would have been a good option to take, if there weren't any adverse interactions with the medication.

I knew there was a reason it spiked my asthma. Looks like I have some sort of a histamine intolerance/mast cell disorder.

It's actually really interesting but I believe mast cell issues and hyperacusis may be related in some form. Tinnitus is incredibly common in MCAS, almost every single post on the MCAS subreddit mentions it as a symptom. I'm thinking the increased histamine in the body from the mast cells getting excited further closes the potassium channels. Also, mast cells release ATP when they are activated. Both conditions involve ATP being released from stimulation that shouldn't bother the body. Also, my MCAS seems to be incredibly similar to my loudness hyperacusis, just in a different sense. I'm bothered by scents I shouldn't be bothered by, and every smell seems stronger than usual, so much so that I smelled our municipality's cleaning solution in our tap water when my boyfriend couldn't smell it at all. What are your thoughts on that?

 

[Utdmad89]

Oh nice! I wonder what it actually does to help noxacusis? Any major side effects so far?

Oh, neat. So it does something with the synapses?

That's very annoying. I'm not sure why some doctors are so hesitant with prescribing some of these medications when the theories are sound. Hopefully, you can try it out soon.

I'm a little bit worried about visual snow as a side effect from the potassium openers. That's why I'm leaning a little more towards CBD as an opener, I don't believe it touches the other channels to a significant degree.

I might have to include it. I have a stash here that's just sitting there. I'm just a little worried about dulling the pain rather than targeting the setback mechanism. Do we know of any others that antagonize the P2X2 receptor but don't block the sodium channels?

I'm sorry to hear that. Have you found one particular medication that works the best for your symptoms so far?

I knew there was a reason it spiked my asthma. Looks like I have some sort of a histamine intolerance/mast cell disorder.

It's actually really interesting but I believe mast cell issues and hyperacusis may be related in some form. Tinnitus is incredibly common in MCAS, almost every single post on the MCAS subreddit mentions it as a symptom. I'm thinking the increased histamine in the body from the mast cells getting excited further closes the potassium channels. Also, mast cells release ATP when they are activated. Both conditions involve ATP being released from stimulation that shouldn't bother the body. Also, my MCAS seems to be incredibly similar to my loudness hyperacusis, just in a different sense. I'm bothered by scents I shouldn't be bothered by, and every smell seems stronger than usual, so much so that I smelled our municipality's cleaning solution in our tap water when my boyfriend couldn't smell it at all. What are your thoughts on that?

How are you getting on now?