Lenire — Bimodal Stimulation Treatment by Neuromod

[threefirefour]

No I didn't have any dental work on that side... What happened is a mystery...

I have the symptoms on the 3 branches of the trigeminal nerve. That means that it is the source of the ganglion that is overexcited... according to me, by the tongue stimulation (most people with trigeminal neuralgia have only one or two branches affected). I'm actually trying Chinese plants to calm excitability of the system and auricular therapy. The doctor said that he thinks my nerves are not damaged, just overexcited and perhaps have some inflammation. I'll do an MRI next week just to be sure there is no neurological reasons behind this. My doctor in auricular therapy said to me that by stimulating the tongue, several nerves are stimulated, not only the trigeminal one. So he tries to calm down the activity of my whole nerve system that Lenire could have excited...

I did my Lenire session on Saturday morning which went well (I felt slight stimuli of the nerves in the face at times during my sessions but nothing painful and a user with whom I am in contact tells me they feel the same during sessions) and on Saturday afternoon I suddenly felt a very sharp pain in the pavilion of the left ear which spread all over my left side in the hours that followed.

Above all, I don't want to worry anyone (I'm the only one it happens to, I wonder why...), just wanting to inform everyone, given that @Kam75 has spoken of what happened to me. I believe in Lenire a lot and I wholeheartedly hope to be able to continue my treatment to overcome my tinnitus ASAP and that everything goes back to normal.

I hope you a speedy recovery. But please don't feel forced to do this for us. If you do want to risk this from happening again or getting worse nobody here would blame you.

 

[BBakkers]

@OverSoft

Totally agree with you. I don't have the balls to test Lenire at this moment. Too many mixed results. I will also remain very interested in the device and of course still seek a reduction of tinnitus. But for me it's not worth the risks. Staying sane is also worth something.

 

[El BUZZ]

A Facebook user warned about the possibility of developing trigeminal neuralgia many months ago

I would like to know the mechanisms for that. In my understanding the only way for that to happen is by an inflammation which should resolve in less than a month.

Is trigeminal neuralgia worse than tinnitus?

I think it depends on the case. I have a very severe form of tinnitus myself and don't know if I'd trade it with the case of trigeminal neuralgia I know first hand. It's a nasty condition. Just the contact of a gentle breeze against your face can make you feel the worst of the pains of the worst of the toothaches. Same goes for talking, smiling, eating and drinking so... it's a difficult choice.

 

[BBakkers]

@AliceW

I was very curious of your experience with Lenire since you seemed open in your earlier posts. Very unfortunate to read about your situation. I hope you get well soon and find the relief you are looking for.

 

[AliceW]

I would like to know the mechanisms for that. In my understanding the only way for that to happen is by an inflammation which should resolve in less than a month.

I think it depends on the case. I have a very severe form of tinnitus myself and don't know if I'd trade it with the case of trigeminal neuralgia I know first hand. It's a nasty condition. Just the contact of a gentle breeze against your face can make you feel the worst of the pains of the worst of the toothaches. Same goes for talking, smiling, eating and drinking so... it's a difficult choice.

Trigeminal neuralgia is 100% worse than tinnitus...

After my 6 days of Lenire, It felt like my tinnitus was less intrusive... I think Lenire can provide good results for my tinnitus... so frustrating to have my device in front of me without being able to use it for the moment.

 

[alex1975]

No I didn't have any dental work on that side... What happened is a mystery...

I have the symptoms on the 3 branches of the trigeminal nerve. That means that it is the source of the ganglion that is overexcited... according to me, by the tongue stimulation (most people with trigeminal neuralgia have only one or two branches affected). I'm actually trying Chinese plants to calm excitability of the system and auricular therapy. The doctor said that he thinks my nerves are not damaged, just overexcited and perhaps have some inflammation. I'll do an MRI next week just to be sure there is no neurological reasons behind this. My doctor in auricular therapy said to me that by stimulating the tongue, several nerves are stimulated, not only the trigeminal one. So he tries to calm down the activity of my whole nerve system that Lenire could have excited...

I did my Lenire session on Saturday morning which went well (I felt slight stimuli of the nerves in the face at times during my sessions but nothing painful and a user with whom I am in contact tells me they feel the same during sessions) and on Saturday afternoon I suddenly felt a very sharp pain in the pavilion of the left ear which spread all over my left side in the hours that followed.

Above all, I don't want to worry anyone (I'm the only one it happens to, I wonder why...), just wanting to inform everyone, given that @Kam75 has spoken of what happened to me. I believe in Lenire a lot and I wholeheartedly hope to be able to continue my treatment to overcome my tinnitus ASAP and that everything goes back to normal.

I see. Please keep us posted. Hopefully you can make a speedy recovery... Wishing you all the best.

 

[El BUZZ]

so frustrating to have my device in front of me without being able to use it for the moment.

Send it this way. I'll give it good use...

Prompt recovery to you. You'll be fine in no time. The person I know who suffers from it is back on track at his 100% thanks to meds. Hugs.

 

[Mathew Gould]

I guess this is up to each person, ain´t it.

I took the risk. Since I figured that I have already been through hell and know what it feels like and if I could get an improvement with Lenire it would be worth the risk.

To each its own. In regards to Lenire success stories, I would consider myself one.
Since Lenire didn´t sell a cure. And I do consider myself soothed.

And if I count the number of calm days over the last 7 days, the count is up to 4.

What do you consider a calm day? No tinnitus at all or the tinnitus is so low that it doesn't bother you?

 

[astaff14]

@pinklights98 how are you faring? I was really upset to hear that Lenire didn't help you and made it worse. I'm thinking of you and wishing you well. You don't deserve the hell you've experienced with tinnitus

 

[pinklights98]

I'm praying for you @AliceW. Wishing you a speedy recovery from this new affliction and your tinnitus.

 

[hans799]

Aside from this, I'm getting really confused by MML stats. 10 dB is usually described as being as loud as someone breathing - ie almost inaudible. If your tinnitus is 10 dB or below, in what situations do you hear it?

I have to be in a quiet room to hear it. At 6 weeks sometimes even minimal noise (like a bathroom boiler humming behind a closed door) could mask it. I'd rate it at 2/10.

Except when it is god damned spiking, like right now. It's nearly 3AM and I can't sleep (just flew home from Ireland). This second Lenire stimulus was a real bitch. I'm back on the first one, starting tomorrow, I can't wait for it to work its magic again...

 

[Jazzer]

@Jazzer, with all due respect but I find of tremendous bad taste and sensationalism to keep bringing up Allan's case. It has been discussed "ad nauseam" what he was going through and to pretend that Lenire was the cause of it all is way too awkward.

@AliceW I feel really sorry for you as I have a relative who is a trigeminal neuralgia sufferer as well, although he has his symptoms under control due to meds, in his bad days he could not smile, talk, drink, eat nor talk... Lots of things can trigger it, a hard impact against your face, a vein pushing against the nerve, an infection, etc... I really hope your case gets resolved asap and to see you determined to continue your treatment with Lenire makes me feel very confident about the device.

Hi @El BUZZ
I have to point out to you that your summary of my post is extremely 'skewed.'
Dear Allan is very fresh in our minds.
His situation was a complex mix of several significant factors, I agree.
One of those factors was undoubtedly Lenire.
You say "tremendous bad taste, and sensationalism."
What a peculiar response that is.
I am not a newspaper reporter, I have no axe to grind, I am not selling tabloids.

And then you say "to pretend that Lenire is the cause of it all is way to awkward."
I 'pretend' nothing - as I simply cannot know - any more than you can.
Your choice of the word 'awkward' is very strange - and of itself - awkward.
It is irrelevant in this context my friend.

My tinnitus is very severe.
Hell on earth.
I live with it.
Somehow I cope with it.
I care very deeply for those who suffer as I do.
I am extremely aware of the possibility that my choices could? make things worse.

To everybody on this forum I preach caution.
That is both the least, and the most that I can do.
It is in my nature to care, and therefore my duty to express my personal concerns.
I am just one opinion.
Nobody has to listen to me - I am just one of many voices, am I not.
I care for everybody here.

There is 'Hell.'
And then there is 'Sheer Hell!'

Finally - Curtis Fuller was good,
but not the very best IMHO.
Best wishes
Dave x
Jazzer

 

[Don Tinny]

I would like to know the mechanisms for that. In my understanding the only way for that to happen is by an inflammation which should resolve in less than a month.

I think it depends on the case. I have a very severe form of tinnitus myself and don't know if I'd trade it with the case of trigeminal neuralgia I know first hand. It's a nasty condition. Just the contact of a gentle breeze against your face can make you feel the worst of the pains of the worst of the toothaches. Same goes for talking, smiling, eating and drinking so... it's a difficult choice.

But there are drugs to get some relief from trigeminal neuralgia. Am I wrong?

 

[AliceW]

But there are drugs to get some relief from trigeminal neuralgia. Am I wrong?

Antiepileptic (Gabapantin)... very strong med with a lot of side effects. And does not help everyone. I don't want to take it at all. My neuralgia is new. I want to cure myself by natural way (Auricular therapy, acupuncture, Chinese herbs...)

Besides all this, I have not followed the latest feedback on Lenire. Have some people had good results?

 

[El BUZZ]

Hi @El BUZZ
I have to point out to you that your summary of my post is extremely 'skewed.'
Dear Allan is very fresh in our minds.
His situation was a complex mix of several significant factors, I agree.
One of those factors was undoubtedly Lenire.
You say "tremendous bad taste, and sensationalism."
What a peculiar response that is.
I am not a newspaper reporter, I have no axe to grind, I am not selling tabloids.

And then you say "to pretend that Lenire is the cause of it all is way to awkward."
I 'pretend' nothing - as I simply cannot know - any more than you can.
Your choice of the word 'awkward' is very strange - and of itself - awkward.
It is irrelevant in this context my friend.

My tinnitus is very severe.
Hell on earth.
I live with it.
Somehow I cope with it.
I care very deeply for those who suffer as I do.
I am extremely aware of the possibility that my choices could? make things worse.

To everybody on this forum I preach caution.
That is both the least, and the most that I can do.
It is in my nature to care, and therefore my duty to express my personal concerns.
I am just one opinion.
Nobody has to listen to me - I am just one of many voices, am I not.
I care for everybody here.

There is 'Hell.'
And then there is 'Sheer Hell!'

Finally - Curtis Fuller was good,
but not the very best IMHO.
Best wishes
Dave x
Jazzer

I know my poor English can lead to misunderstandings. Sorry about that.

I feel deeply sorry for you having to manage to cope with this form of tinnitus. I am also in that struggling side of all this. Very severe case. Fluctuations aplenty but very bad days most of the time.

I still think Lenire could benefit us but yes, I see your point of not putting any more noise into the mix.

Time will tell.

Roswell Rudd, JJ Johnson and Wycliffe Gordon are beasts if you ask me.

But there are drugs to get some relief from trigeminal neuralgia. Am I wrong?

Yes. There are.

 

[Don Tinny]

I don't want to take it at all. My neuralgia is new. I want to cure myself by natural way (Auricular therapy, acupuncture, Chinese herbs...)

Wise decision

 

[Sironketchup]

I can't wait!

Lenire works for some.
It is the only way out at the moment.
Yes it's expensive, yes it could be a risk.
I'm ready to take the risk. I have nothing to lose. All or nothing.
This condition has destroyed my life. I have a THI of 65.
It took my life, and raped it from behind.

Just a pity that they don't tell who is going to profit the most. They must have the data.

 

[Mandalay]

@AliceW

Dear Alice, I'm so sorry for your condition! I hope it will improve soon, I want to send you some energy and hope.

And thanks a lot for sharing your story, it is important to know about your experience.

Whatever caused it, the cold (a virus), Lenire, or the combination of both, is not known yet.

The more information from the Lenire users in real life, the better.

 

[AliceW]

Thank you all.

Neuromod says that I am the only one to have symptoms of trigeminal neuralgia of the 2,000 people who have used Lenire to date.

The medical chief doesn't understand why I have this. I don't know what happened to me. Surely a bad combination of circumstances between my infection or returning from Dublin and perhaps the associated stimulation from Lenire. The body sometimes reacts in a weird way... I will find out if the MRI shows something next Monday and if not I think it was the virus combined with the stimulation from Lenire which caused a bad reaction on the nerve... My doctor thought otherwise, that I have overreacted to electrical stimuli because some people are more sensitive than others.

 

[alex1975]

Does anyone have an idea of approximately how many people have tried Lenire since it came out? Wondering if that number is in the hundreds, thousands,..?

BTW, a quick update; I was able to change my appointment to March 3rd from late April.

 

[AliceW]

Does anyone have an idea of approximately how many people have tried Lenire since it came out? Wondering if that number is in the hundreds, thousands,..?

2000 people.

 

[Laure Chauvin]

Trigeminal neuralgia is 100% worse than tinnitus...

After my 6 days of Lenire, It felt like my tinnitus was less intrusive... I think Lenire can provide good results for my tinnitus... so frustrating to have my device in front of me without being able to use it for the moment.

I am sure you will recover soon Alice, you are a warrior. When we talked together a few weeks ago, you proved how combative you are.

Keep faith and hope!

 

[Phat Tuna]

Hello everyone,

@Kam75 talks about me.

I had to stop Lenire after using it for 6 days. I am so sad. I really don't know what happened to me...

After 6 days of using Lenire in December, I triggered a sharp pain in the external pavilion of my left ear and gradually the pain spread throughout the left side of my head. I feel tingling, burning and unbearable pain like electric shocks in the hemiface and the skull on the left side. I really don't know what happened after using Lenire. I've never had this before. it seems to be a neuralgia of the left trigeminal nerve on the 3 branches... (like an electrical hyperexcitability of the nerve). It's lasted more than a month now... I worry a lot. of course I cannot use Lenire as long as these symptoms persist.

I have an MRI planned on February the 3th but I think nothing will be seen/found.

My doctor thinks I overreacted to Lenire's electric stimulation. I don't understand why because no one has this side effect in the clinical trials and the stimulation is low and safe. I am so disappointed to have to stop the treatment because I think it really can soothe my tinnitus.

I really hope to have these symptoms resolved ASAP and continue the treatment again...

Could be TMJ Disorder. Might be worth looking into it if you haven't already.

 

[valeri]

Antiepileptic (Gabapantin)... very strong med with a lot of side effects. And does not help everyone. I don't want to take it at all. My neuralgia is new. I want to cure myself by natural way (Auricular therapy, acupuncture, Chinese herbs...)

Besides all this, I have not followed the latest feedback on Lenire. Have some people had good results?

My mother had severe neuralgia which was cured by Endep 10mg. After much running around an oral surgeon was her only saviour.

She was so desperate for relief that not trying medication was not an option for her.

Hope you find relief too!

 

[valeri]

No, bad decision!

Considering mixed bag results plus possible worsening with new sounds, I think unless you are desperate nobody should rush to try Lenire!

I would consider myself desperate but I know it can get even worse, so no thank you!

And believe me I was prepared to move to Ireland for 4-5 months to try it.

 

[EDDTEKK]

It seems 20% have benefited from Lenire and 80% have worsened?

 

[HootOwl]

It seems 20% have benefited from Lenire and 80% have worsened?

Lol no.

 

[Lurius]

It seems 20% have benefited from Lenire and 80% have worsened?

Lol, what?

 

[threefirefour]

It seems 20% have benefited from Lenire and 80% have worsened?

Is this really what the critics believe?

 

[Jazzer]

@Rafa03: thanks a lot for the support! I feel so lonely with the condition...

@Autumnly, @El BUZZ: I know personally the girl who got trigeminal neuralgia. She developed that sickness just 6 days after using Lenire. She contacted Neuromod and they answered her that they had zero participants in the trials who developed trigeminal neuralgia using Lenire.

So she's also somehow lost. She wonders if this is a coincidence or is it Lenire that caused that sickness.

I was devastated when I learned that, as I was planning to try Lenire, but now I won't.

'You are right to be cautious.'