Rimegepant for Treatment of Migraine and Phonophobia (Hyperacusis?)

[InNeedOfHelp]

Safety and Tolerability Study of Daily Dosing Rimegepant in Episodic Migraine Prevention

I came across this study. This medication has been proven efficient for migraines and for sound sensitivity which is part of migraine attacks. The medicine is already EMA/FDA approved. The Phase IV study specifically marks hyperacusis as tag for the study, and targets phonophobia together with migraines. Phonophobia here is not described as anxiety for sound as we might define it but as higher sensitivity to sensory stimuli, such as uncomfort of utensils clanking together etc. Hence the hyperacusis tag. They seem to go hand in hand.

Are the mechanisms of migraine induced 'hyperacusis/phonophobia' different from "auditory gain" hyperacusis? Is there a chance this can help general phonophobia/hearing sensitivity too? Here is a study clearly showing decrease in audio sensitivity/phonophobia against placebo:

Rimegepant, an Oral Calcitonin Gene–Related Peptide Receptor Antagonist, for Migraine

 

[DaveFromChicago]

To InNeedOf Help:

Thanks ever so much for posting what is (to me) a singularly important finding.

It's the damnedest thing: When I get a migraine my tinnitus virtually disappears, and my White Noise Masker on its regular volume level is nonetheless less loud.

It's gotten to the point where I welcome migraines as "the perfect vacation" from this, since I can alleviate the migraine pain with Maxalt.

When this happens, I will pull my car into my garage, close the door, turn off the engine, and roll up the windows (which is my do-it-yourself makeshift, personal sound deprivation chamber). This temporary state of the sort of total silence that as a matter of course I experienced before tinnitus is present, and luxurating in this (which I call an orgasm in reverse) will produce veritable tears of gratefulness.

But all vacations must end, and at Midnight the Coach must turn into the Pumpkin, so after the migraine is gone there will be a tinnitus spike that will have me raving to the point where I am afraid of shocking people if I go out in Public.

I have explained this to a few doctors, and I was so disappointed that from just the purely objective standpoint of medical curiosity they were nonetheless totally uninterested.

Could Rimegepant be the answer I have been looking for for 8.5 years?

 

[Joeseph Stope]

To InNeedOf Help:

Thanks ever so much for posting what is (to me) a singularly important finding.

It's the damnedest thing: When I get a migraine my tinnitus virtually disappears, and my White Noise Masker on its regular volume level is nonetheless less loud.

It's gotten to the point where I welcome migraines as "the perfect vacation" from this, since I can alleviate the migraine pain with Maxalt.

When this happens, I will pull my car into my garage, close the door, turn off the engine, and roll up the windows (which is my do-it-yourself makeshift, personal sound deprivation chamber). This temporary state of the sort of total silence that as a matter of course I experienced before tinnitus is present, and luxurating in this (which I call an orgasm in reverse) will produce veritable tears of gratefulness.

But all vacations must end, and at Midnight the Coach must turn into the Pumpkin, so after the migraine is gone there will be a tinnitus spike that will have me raving to the point where I am afraid of shocking people if I go out in Public.

I have explained this to a few doctors, and I was so disappointed that from just the purely objective standpoint of medical curiosity they were nonetheless totally uninterested.

Could Rimegepant be the answer I have been looking for for 8.5 years?

It strikes me that we tinnitus crowd are quite a diverse bunch.

 

[addot]

Rimegepant is a CGRP receptor antagonist. Interestingly, the Hyperacusis Research 2022 grant was awarded to a study that aims to investigate the connection between CGRP and hyperacusis. Quoting from the link above:

"A subset of patients with hyperacusis experience pain in the presence of typically tolerated sound. Little is known about the origin of this pain. One hypothesis is that the type II auditory nerve fibers (type II neurons) of the inner ear may act as pain receptors after exposure to damaging levels of noise (acoustic damage). Our lab has shown that type II neurons share key characteristics with pain neurons: They respond to tissue damage; they are hyperactive after acoustic damage; and they express genes similar to pain neurons, such as the gene for CGRP-alpha. However, type II neurons are not the only cell type that responds to acoustic damage. The immune system responds quickly after damaging noise exposure. In other systems of the body such as the skin, CGRP-alpha can affect immune cell function. This project looks at the expression of CGRP-alpha in type II neurons after noise exposure. CGRP-alpha will be blocked during noise exposure to see if this affects the immune response to tissue damage.

The long-term goal is to understand the role of CGRP-alpha in the neurons and immune response of the inner ear, which may illustrate a role for type II neurons in pain and inflammation following tissue damage. CGRP-alpha has been a target for therapeutics for painful conditions such as migraine, making it an attractive therapeutic target for pathologies of the inner ear."​

The researcher responsible for this study is Megan Beers Wood. You might recall her from a 2020 Hyperacusis Research Webinar on type II afferents. She is affiliated with Paul Fuchs, who is one of the main figures behind the theory that type II afferents act as pain receptors in the inner ear.

 

[Sugar_Boy]

Wowawesome!

I have tinnitus, dizziness, headaches, isolation, anxiety, palpitations. I hope it's helpful. Is there anyone out there like me?

 

[Diego LR]

To InNeedOf Help:

Thanks ever so much for posting what is (to me) a singularly important finding.

It's the damnedest thing: When I get a migraine my tinnitus virtually disappears, and my White Noise Masker on its regular volume level is nonetheless less loud.

It's gotten to the point where I welcome migraines as "the perfect vacation" from this, since I can alleviate the migraine pain with Maxalt.

When this happens, I will pull my car into my garage, close the door, turn off the engine, and roll up the windows (which is my do-it-yourself makeshift, personal sound deprivation chamber). This temporary state of the sort of total silence that as a matter of course I experienced before tinnitus is present, and luxurating in this (which I call an orgasm in reverse) will produce veritable tears of gratefulness.

But all vacations must end, and at Midnight the Coach must turn into the Pumpkin, so after the migraine is gone there will be a tinnitus spike that will have me raving to the point where I am afraid of shocking people if I go out in Public.

I have explained this to a few doctors, and I was so disappointed that from just the purely objective standpoint of medical curiosity they were nonetheless totally uninterested.

Could Rimegepant be the answer I have been looking for for 8.5 years?

Did you or anyone else try Rimegepant for tinnitus and/or hyperacusis? I am tempted to try it.

Diego

 

[DaveFromChicago]

Did you or anyone else try Rimegepant for tinnitus and/or hyperacusis? I am tempted to try it.

I have been told (by admittedly unofficial sources) that Neurologists will prescribe this only for those who have the most truly debilitating, chronic Migraines.

Go ahead and see if a Neurologist will give you this.

 

[Johan_L]

I have been told (by admittedly unofficial sources) that Neurologists will prescribe this only for those who have the most truly debilitating, chronic Migraines.

Go ahead and see if a Neurologist will give you this.

Any idea why your sources would claim this?

They have done several double-blind studies with over 500 patients each and rare side effects seem to be headache and urinary tract infections

BHV3000-303 (NCT03461757)
BHV3000-302 (NCT03237845)
BHV3000-301 (NCT03235479)
BHV3000-305 (NCT03732638)

 

[DaveFromChicago]

Any idea why your sources would claim this?

They have done several double-blind studies with over 500 patients each and rare side effects seem to be headache and urinary tract infections

BHV3000-303 (NCT03461757)
BHV3000-302 (NCT03237845)
BHV3000-301 (NCT03235479)
BHV3000-305 (NCT03732638)

You have piqued my curiosity such that I may see a Neurologist for this.

As I reported previously, it's the damnedest thing - when I have a Migraine the tinnitus completely disappears (and only when this occurs).

I mentioned this to my Primary Care Doctor last week when I had my Annual Physical, and he was completely baffled. Perhaps the brain is so preoccupied with the Migraine pain that it has no more "sensory room" left for tinnitus perception. Or, perhaps there is an alternation in the blood flow.

How about this? I will ingest tablespoons full of the flavor enhancer Accent, because it contains MSG (Monosodium Glutamate), which triggers a Migraine. When the tinnitus disappears, I will take the drug Maxalt, which eliminates the Migraine pain. I will thus have eliminated both conditions.

Should I submit this to a Medical Journal, and be placed on the Short List for being awarded the Nobel Prize for Medicine?

 

[Diego LR]

I am taking another anti-migraine medication (Flunarizine) that is helping with my tinnitus & hyperacusis. This is why I want to continue exploring this avenue of anti-migraine meds. I have the consultation with my neurologist next week.

 

[Nick47]

I am taking another anti-migraine medication (Flunarizine) that is helping with my tinnitus & hyperacusis. This is why I want to continue exploring this avenue of anti-migraine meds. I have the consultation with my neurologist next week.

@Diego LR, hey man. What dose are you on and how long did you take it before you noticed benefit?

 

[Diego LR]

@Diego LR, hey man. What dose are you on and how long did you take it before you noticed benefit?

I am taking 5 mg. I noticed an improvement in my tinnitus after the first dose, and in my hyperacusis after a couple of weeks.

 

[DeanD]

I am taking 5 mg. I noticed an improvement in my tinnitus after the first dose, and in my hyperacusis after a couple of weeks.

@Diego LR, are you still continuing to see improvement?

 

[Diego LR]

@Diego LR, are you still continuing to see improvement?

My symptoms are still distressing; severe and reactive tinnitus and mild hyperacusis. But I know that without Flurpax (Flunarizine) I would feel even worse and be in daily pain.

 

[StoneInFocus]

I have been told (by admittedly unofficial sources) that Neurologists will prescribe this only for those who have the most truly debilitating, chronic Migraines.

Go ahead and see if a Neurologist will give you this.

In my country, CGRP blockers are only reimbursed for patients that have already tried other anti-migraine drugs for a couple of months and Botox treatment. They can also only be prescribed by a neurologist.

I think the most difficult part (if you don't suffer from migraines) is getting a neurologist on board to prescribe you anti-migraine medication in the first place. Botox treatment might actually help some forms of hyperacusis but, as far as I know, it has never been tried before for pain hyperacusis by anyone on this forum, and neither has a CGRP blocker.

 

[Nick47]

it has never been tried before for pain hyperacusis by anyone on this forum, and neither has a CGRP blocker.

It worked on rats. See research by Megan Beers Wood.

 

[StoneInFocus]

It worked on rats. See research by Megan Beers Wood.

Do you have a link to the study?

By the way, you have pain hyperacusis, right? Would you be interested in trying it?

 

[Nick47]

Do you have a link to the study?

By the way, you have pain hyperacusis, right? Would you be interested in trying it?

Yes and no. The results of the study were presented at ARO 2023 and then uploaded to YouTube along with all the other presentations. I watched the presentation, but they removed the videos from public view later on.

It's not available in the UK. I had pain hyperacusis for 6-9 months before it improved.

 

[Diego LR]

It's not available in the UK. I had pain hyperacusis for 6-9 months before it improved.

It is now available in the UK via The National Migraine Centre. I am going to try it.

 

[haha ear go eeee]

It is now available in the UK via The National Migraine Centre. I am going to try it.

Any luck? Do you have noxacusis?

 

[Diego LR]

Any luck? Do you have noxacusis?

Rimegepant did not help. I don't have noxacusis.

 

[Josh59]

Hello,

Concerning RIMEGEPANT, a migraine medication that blocks CGRP receptors, have other people with pain hyperacusis tried it or would they be interested in trying it?

@Diego LR, I can see that you're apparently the only one here to have tried it, but from what you've said, you have loudness hyperacusis and not pain hyperacusis. Is that correct?

It would be interesting if, say, 50 patients with pain hyperacusis could try it and see if it helps.

Can this type of migraine medication be effective for tension headaches? Or for sudden pain that disappears afterwards?

 

[Diego LR]

@Diego LR, I can see that you're apparently the only one here to have tried it, but from what you've said, you have loudness hyperacusis and not pain hyperacusis. Is that correct?

I am currently on Ajovy (Fremanezumab), which is similar to Rimegepant, but injections instead of oral tablets, and it is cheaper In the beginning I thought it did not help but I can now see the difference. I have been taking Ajovy for a month and I feel better. I am not as sensitive as before, I can go out with earplugs and be fine, I do not have big setbacsk where I just want to die, my mood has improved, it is like an antidepressant for me. My tinnitus is more stable and slightly better. I am planning to continue with the medication.

 

[ErikaS]

I am currently on Ajovy (Fremanezumab), which is similar to Rimegepant, but injections instead of oral tablets, and it is cheaper In the beginning I thought it did not help but I can now see the difference. I have been taking Ajovy for a month and I feel better. I am not as sensitive as before, I can go out with earplugs and be fine, I do not have big setbacsk where I just want to die, my mood has improved, it is like an antidepressant for me. My tinnitus is more stable and slightly better. I am planning to continue with the medication.

Has the Ajovy improved your sound reactive component at all?

 

[Diego LR]

Has the Ajovy improved your sound reactive component at all?

Yes it has, slightly. I now feel confident to go out around London with earplugs and be fine. I still avoid noisy interiors, restaurants etc.

 

[NoahCanada]

The clinical trial was just completed on 2023-12-30.

 

[Josh59]

Yes it has, slightly. I now feel confident to go out around London with earplugs and be fine. I still avoid noisy interiors, restaurants etc.

Have you always improved from Ajovy (Fremanezumab)?

Do you also suffer from hyperacusis? If so, what was the pain like? In the tensor tympani muscle?

Thank you.

The clinical trial was just completed on 2023-12-30.

The results should be out in the next few months?