In Loving Memory of Padraigh Griffin

[ZFire]

This device is NOTHING like Lenire. Lenire does not target any physiological cause of tinnitus. The University of Michigan device does.In the real world application of this device it will be possible to refine and change the parameters mid treatment to a set that may be better for you.

This option was not present in the clinical trial to my knowledge.

Trial and error can occur. Maybe with slight adjustments to the positioning of the electrical stimulus and sound timings the other patients might have achieved similar results.

Only time will tell. I'm Shore it will work

I was looking back at some of the older posts in the New University of Michigan Tinnitus Discovery — Signal Timing thread and this one, from @Padraigh Griffin, who sadly passed away recently, hurts the most.

I really wish @Padraigh Griffin was still here with us. I would have loved to see him parse through these latest developments. In terms of optimism, there was no one as hopeful as him for the future. He strongly believed that we were on the precipice of a technological revolution, one where tinnitus would easily be solved. A big believer in Dr. Shore's device as well and was fully convinced that tinnitus is solely an electrical signaling problem.

I'm still in disbelief that he's gone, but wanted to give this individual some remembrance here. The man was a sage.

RIP.

Death Notice of Padraigh Griffin

 

[SmallRonnie]

This is very sad news. He was talking about suicide up until this. It did seem like he would pull through it. Maybe it wasn't actually suicide but I guess we'll never really know.

He was so young and had small children too.

He spoke about having a suicide plan on the 4th of September. I even remember reading that.

 

[Rayk]

This really came as a shock to me today - I had no idea. Truly tragic and heartbreaking. My condolences go out to his friends and family. RIP.

 

[Chinmoku]

This is so tragic, Padraigh Griffin was also father of little twins. I remember his profile picture where he was next to them. I'm so sorry for his family too.

He was a fighter and very optimistic almost to the end. He was quite active also on the potassium channel drugs topics.

I would avoid discussing the modalities of his death because he might not have wanted us to do so, given his twins and extended family, but I'm sure he would have agreed to us raising awareness on how life disabling and horrible these ear conditions can be. If only research advanced faster.

Rest in peace and silence.

 

[CRGC]

Beautiful tribute @ZFire. The news of his passing hit me like a ton of bricks. While I didn't get to interact with him much on here, I can say that he came across as a great guy, a loving father and a super talented athlete. It's so sad to see how conditions like this can rob someone of all they have to offer to the world.

May he rest in peace.

 

[danielthor]

I was always looking forward to his posts regarding these technological advancements.

I have a bunch of his posts saved as screenshots on my phone, and every time I feel down I read them and I find hope. He gave me huge belief with his own beliefs and although I wish he had lived to see it for himself; at least he encouraged me (and others) to try their best to live to see these beliefs come true. I truly believe they will, that's how much hope he has given me. That's how much hope he continues to give me.

He is able to bring hope despite no longer being here with us. That's the kind of guy @Padraigh Griffin was.

Rest in peace.

 

[annV]

Fuck tinnitus. RIP Padraigh.

 

[sayokandex]

He was one of the few people who filled me with hope when I first started following Tinnus Talk. Even though we had no communication and were thousands of kilometers away, his loss made me very sad. I hope where he goes is quiet and calm.

 

[Damocles]

A very thoughtful recognition, @ZFire. @Padraigh Griffin would be touched.

I was looking back at some of the older posts in the New University of Michigan Tinnitus Discovery — Signal Timing thread and this one, from @Padraigh Griffin, who sadly passed away recently, hurts the most.

Understood. When I see old posts by @Danny Boy I feel mild dissociation, and have to pause for a moment until the feeling passes.

I would read his messages on nights when I couldn't sleep and tinnitus would have me in the grip of fear, and they would always make me feel a little better.

But I don't want to hijack this thread. Maybe I'll write more about that one day in @Danny Boy's.

I really wish @Padraigh Griffin was still here with us. I would have loved to see him parse through these latest developments.

Agreed. I loved reading his posts in the Research News threads. It would have been great to have him here to see how well-placed his beliefs (seemingly) were.

The man was a sage.

For real. An absolute credit to our community (just as many still struggling are). A great loss in so many ways.

Love and prayers to his family.

 

[NYCGuy]

Padraigh's passing hit me hard. What a fighter. He did surgery etc and fought until the last moment to try to get better.

He suffered from a middle ear issue similar to mine but his was very extreme and a very unique case.

Even amid his struggle, he always was supportive and positive to others, I loved that about him.

He will truly be missed.

 

[AfroSnowman]

Tinnitus has claimed another one of us.

Padraigh may you and your family find peace.

 

[ECP]

Oh my goodness, rest in peace, dear Padraigh.

I am fairly new around here, so I did not know him at all, but I am nonetheless saddened to hear that anybody from this wonderfully supportive and knowledgeable message board has passed away. This place is truly a lifeline and a refuge for those of us who feel misunderstood or dismissed by the medical community, friends, or family.

I hope that wherever he is, he is enjoying the silence and comfort that his physical maladies did not allow him to experience on the plane of bodily existence.

 

[Aussie Lea]

Rest in peace. You were a beautiful soul.

 

[AnthonyMcDonald]

Rest in peace Padraigh. You suffered so much, yet stayed optimistic about the future of research and treatments, being supportive of others. You gave me motivation and hope in my darkest times, to do research and read everything there is about potassium channels and the DCN. I wouldn't be where I am today without you. You will forever be in my memory.

 

[Nick47]

A clever and knowledgeable person. A gap left.

 

[KoolKat]

@ZFire, you are a saint for this. I never talked to Padraigh directly but his lack of presence is definitely noticed. I always looked forward to his posts. He brought a lot to the table, and the picture with his babies No person and I mean no person would ever leave their babies defenseless & abandoned which brings me to the next point in just how HORRIBLE, DANGEROUS AND POWERFUL TINNITUS IS. We have to stop this narrative that tinnitus is just something you learn to live with. IT IS NOT.

I just got knots in my stomach typing this, thinking about his children, and him missing his first Christmas. His kids, if those pics are recent, are probably so confused right now and as they grow up they will vaguely remember him and it hurts because you know he probably never intended for this to happen to him. I feel like in the future when his kids get older and mature, some of us should reach out and tell them just how amazing their father was, and how impactful he was in our lives.

If we ever get cured or treated, we owe it to our fallen brothers and sisters to get their stories and names out to the world. We didn't deserve this.

 

[SDazzle]

It's taken me a while to feel like I can write about this devastating news.

Padraigh and I had many discussions about our tinnitus journey. He and I had surgery for middle ear myoclonus with the same surgeon within days of each other (almost exactly a year ago). We supported each other on the rollercoaster recovery and had hope that by the time summer 2022 came around we would be over the worst and sat in a sunny garden with our family and friends sipping a beer.

His journey was not as straight forward as he had a second surgery which gave mixed results. He was very despondent about this and it sent him on quite a downward spiral.

My tinnitus and myoclonus started around 18 months ago. The myoclonus had been around two years previous but raised its ugly head again when my 'regular' tinnitus appeared. Although I did a lot of research at the start I quickly realised that immersing myself in it was quite damaging to my state of mind and that working on my overall anxiety levels had a more positive outcome. I am not for one moment suggesting that you can make your tinnitus vanish by reducing anxiety but I felt that the less scared I was of it, the less it bothered me. I can't make it go away so I had to find another way of coping and for me, it worked.

Around June this year Padraigh sent me a long message. He was feeling very depressed and his writing was that of someone frantic for answers from clinical research. I tried to reassure Padraigh and explained that taking a step back from the research may give some relief. I suggested trying to focus on things he used to enjoy and try to reduce his stress. He took negatively to this in a way I've never seen him respond before. I was really worried about him. I genuinely wanted to give him a virtual hug. But he removed me as a friend and blocked me on Facebook. I decided I wasn't going to reach out to him on here as he clearly didn't want contact with me and honestly I was still very hurt by some of the things he said to me. I considered him a friend.

So when I heard about what had happened my heart broke and I felt some responsibility. Should I have made an effort to reach out? Did something I say make things worse? I know we can't go back in time, but I'm truly sorry my friend. RIP.

 

[Nick47]

Around June this year Padraigh sent me a long message. He was feeling very depressed and his writing was that of someone frantic for answers from clinical research. I tried to reassure Padraigh and explained that taking a step back from the research may give some relief. I suggested trying to focus on things he used to enjoy and try to reduce his stress. He took negatively to this in a way I've never seen him respond before. I was really worried about him. I genuinely wanted to give him a virtual hug. But he removed me as a friend and blocked me on Facebook. I decided I wasn't going to reach out to him on here as he clearly didn't want contact with me and honestly I was still very hurt by some of the things he said to me. I considered him a friend.

I had a similar angry response from Padraigh that made me feel guilty. I have and continue to suffer a lot, probably similar to how he did. It was discussing the research on SPI-1005. I pointed out the test parameters used and got an angry response. Afterwards I understood the reasons and held little grudge against it. Two people in a big struggle I guess. I found his honesty and knowledge helpful though and I am sad and shocked at the outcome.

 

[Stuart-T]

It's taken me a while to feel like I can write about this devastating news.

Padraigh and I had many discussions about our tinnitus journey. He and I had surgery for middle ear myoclonus with the same surgeon within days of each other (almost exactly a year ago). We supported each other on the rollercoaster recovery and had hope that by the time summer 2022 came around we would be over the worst and sat in a sunny garden with our family and friends sipping a beer.

His journey was not as straight forward as he had a second surgery which gave mixed results. He was very despondent about this and it sent him on quite a downward spiral.

My tinnitus and myoclonus started around 18 months ago. The myoclonus had been around two years previous but raised its ugly head again when my 'regular' tinnitus appeared. Although I did a lot of research at the start I quickly realised that immersing myself in it was quite damaging to my state of mind and that working on my overall anxiety levels had a more positive outcome. I am not for one moment suggesting that you can make your tinnitus vanish by reducing anxiety but I felt that the less scared I was of it, the less it bothered me. I can't make it go away so I had to find another way of coping and for me, it worked.

Around June this year Padraigh sent me a long message. He was feeling very depressed and his writing was that of someone frantic for answers from clinical research. I tried to reassure Padraigh and explained that taking a step back from the research may give some relief. I suggested trying to focus on things he used to enjoy and try to reduce his stress. He took negatively to this in a way I've never seen him respond before. I was really worried about him. I genuinely wanted to give him a virtual hug. But he removed me as a friend and blocked me on Facebook. I decided I wasn't going to reach out to him on here as he clearly didn't want contact with me and honestly I was still very hurt by some of the things he said to me. I considered him a friend.

So when I heard about what had happened my heart broke and I felt some responsibility. Should I have made an effort to reach out? Did something I say make things worse? I know we can't go back in time, but I'm truly sorry my friend. RIP.

Feel sadness yes - but no responsibility. Your suggestions were kindly meant and could have had no influence on this tragic outcome.

 

[Lurius]

It's taken me a while to feel like I can write about this devastating news.

Padraigh and I had many discussions about our tinnitus journey. He and I had surgery for middle ear myoclonus with the same surgeon within days of each other (almost exactly a year ago). We supported each other on the rollercoaster recovery and had hope that by the time summer 2022 came around we would be over the worst and sat in a sunny garden with our family and friends sipping a beer.

His journey was not as straight forward as he had a second surgery which gave mixed results. He was very despondent about this and it sent him on quite a downward spiral.

My tinnitus and myoclonus started around 18 months ago. The myoclonus had been around two years previous but raised its ugly head again when my 'regular' tinnitus appeared. Although I did a lot of research at the start I quickly realised that immersing myself in it was quite damaging to my state of mind and that working on my overall anxiety levels had a more positive outcome. I am not for one moment suggesting that you can make your tinnitus vanish by reducing anxiety but I felt that the less scared I was of it, the less it bothered me. I can't make it go away so I had to find another way of coping and for me, it worked.

Around June this year Padraigh sent me a long message. He was feeling very depressed and his writing was that of someone frantic for answers from clinical research. I tried to reassure Padraigh and explained that taking a step back from the research may give some relief. I suggested trying to focus on things he used to enjoy and try to reduce his stress. He took negatively to this in a way I've never seen him respond before. I was really worried about him. I genuinely wanted to give him a virtual hug. But he removed me as a friend and blocked me on Facebook. I decided I wasn't going to reach out to him on here as he clearly didn't want contact with me and honestly I was still very hurt by some of the things he said to me. I considered him a friend.

So when I heard about what had happened my heart broke and I felt some responsibility. Should I have made an effort to reach out? Did something I say make things worse? I know we can't go back in time, but I'm truly sorry my friend. RIP.

I dont think you should take it upon yourself to bear the full responsibility for Padraigh. I have found myself to think and say things + react in ways I would not normally do after I got 3+ years in with this nonsensical condition. Lack of sleep over a long, long time and just generally the deep frustration of watching friends, family and people in general move on with their lives, have kids, graduate, get jobs and enjoy cultural events while I'm rotting away in a basement...

I don't know Padraigh's tinnitus levels but someone mentioned that he had a staunch belief in a breakthrough in conventional medicine very soon. I've had the same and I felt like I got rewarded for that attitude last weekend, albeit I'm only carefully optimistic at this point. I was one of the people who flew to Dublin and bought Lenire after all. And while I'm not ready to call it a COMPLETE failure, I believe it has tremendous room for improvement... and so does Neuromod's customer service.

But the point was that if his tinnitus was consistently horrible, we who also suffer from this shouldn't have a hard time imagining how he may have felt. The man had twins after all. A man wants to be there in every capacity for his children. Especially in the prime of your life. This condition will sometimes reduce you to a shadow of your former self, I believe Padraigh had all kinds of emotional rollercoasters with this. My approach to illnesses is usually that the human spirit is very strong but the human mind is fragile. We can adapt to almost anything, bar the stuff that really screws us up in the head, because that's where the spirit resides in the first place. I just hope he didn't suffer in his final moments, whatever they were.

 

[Chinmoku]

Padraigh had a very rare form of tinnitus, he mentioned there were a bunch of cases in the whole world population. He had forced eyelid closure syndrome. He had an electric current running through his head. He was tortured 24/7. His irritability is more than understandable. An athlete with his strength and the prolonged optimism he has shown, and with little adorable twins must have been tortured beyond reason to react like he did. Again, an indictment of the middle age status of medicine and research for ear conditions and neurology, and of the total lack of urgency of researchers who should know better. Research and medicine failed you too, Padraigh. Once again, rest in peace.

 

[bobvann]

Wow this sucks. I trialed Phonak hearing aids on Padraigh's recommendation. Not that they did anything. Obviously they did not help him in the end either. We really need to end all this quackery & nonsense! Find real solutions.

 

[DaveFromChicago]

I mentioned this when I learned of @Allan1967 and @Brian P, and it is applicable as well to @JoeBattams and @Padraigh Griffin (and possibly to so many other former posters that I will spare us the resultant depression from such a full cataloging):

"Here it is 20 years into the New Century, and Medical Science should be held accountable for not having recognized the dire seriousness of this condition and done what was necessary to develop an effective treatment."​

I recall that Senator John Kerry, who was a Vietnam Vet, said during a Senate Subcommittee Hearing, "Who will be the last man to die because of an unnecessary, avoidable war?"

Who will be the last person to die from this because of the inexcusably laggard rate of research from Medical Science?

 

[Joeseph Stope]

I want to express my thoughts and emotions so much on Padraigh's departure.

But the above posts have said it all, said it better and said it before me. Clonakilty and Tinnitus Talk will be poorer places without you. Rest in Peace and condolences to your two children and family.

Maybe your passing will galvanise us better to press for more awareness and research on tinnitus, hyperacusis and the related neurological problems.

 

[Static Sophie 73]

So incredibly sad to read this. My thoughts are with his wife and little boys. As many are saying on here, it is beyond frustrating that in 2022 we don't have effective treatments for this dreadful life-altering condition. People have their own personal limitations that they reach and dear Padraigh reached his.

 

[DebInAustralia]

Padraigh and I emailed back and forth a few times, and spoke on the phone a few months ago.

His suffering was palpable, but he sprinkled positivity into our conversations with his knowledge of research and reasons to remain hopeful about future treatments.

He wanted to hold on.

But he said he was living from day to day, feeling desperate because of the head noise he experienced, which had become unpredictable since his MEM surgeries. He went on to say that his quality of life was a 'fraction of what it was' leaving him housebound.

Given how active he once was, he found his diminished quality of life intolerable.

He told me that he was suffering with severe tinnitus, MEM, and ETD, which caused him to become despondent.

Nobody on this forum should feel responsible for the path Padraigh felt he needed to take.

He said to me once 'I even think sometimes, what is worse? The torture or the anticipation of being tortured so even on my good days, I'm not optimistic'.

He quoted 'the queen of tinnitus CBT - Debbie Featherstone', who said 'you pick a fight with tinnitus, and you are always gonna lose.'

He said that all his life, he had been a fighter. He hated it that there was no contest. The harder he tried to 'fight this beast, the more it beats me up.'

He relayed his frustration with science along with his desperation to beat tinnitus.

One of the last things he said to me was this 'All anyone does in life is try their best, and tinnitus is something so subjective we will never know what one can endure, that maybe another can't... or there is just plain shit tinnitus that nobody can get over...'

I am deeply sorry for Padraigh's family and friends, and all those who knew him. God bless him.

 

[Nick47]

Padraigh and I emailed back and forth a few times, and spoke on the phone a few months ago.

His suffering was palpable, but he sprinkled positivity into our conversations with his knowledge of research and reasons to remain hopeful about future treatments.

He wanted to hold on.

But he said he was living from day to day, feeling desperate because of the head noise he experienced, which had become unpredictable since his MEM surgeries. He went on to say that his quality of life was a 'fraction of what it was' leaving him housebound.

Given how active he once was, he found his diminished quality of life intolerable.

He told me that he was suffering with severe tinnitus, MEM, and ETD, which caused him to become despondent.

Nobody on this forum should feel responsible for the path Padraigh felt he needed to take.

He said to me once 'I even think sometimes, what is worse? The torture or the anticipation of being tortured so even on my good days, I'm not optimistic'.

He quoted 'the queen of tinnitus CBT - Debbie Featherstone', who said 'you pick a fight with tinnitus, and you are always gonna lose.'

He said that all his life, he had been a fighter. He hated it that there was no contest. The harder he tried to 'fight this beast, the more it beats me up.'

He relayed his frustration with science along with his desperation to beat tinnitus.

One of the last things he said to me was this 'All anyone does in life is try their best, and tinnitus is something so subjective we will never know what one can endure, that maybe another can't... or there is just plain shit tinnitus that nobody can get over...'

I am deeply sorry for Padraigh's family and friends, and all those who knew him. God bless him.

I feel and relate to this post @DebInAustralia. I was also a teacher and athlete, although not a pro athlete.

I rarely share my struggle on here with members. Maybe I should do that and leave behind the research and treatment threads.

 

[DebInAustralia]

I rarely share my struggle on here with members. Maybe I should do that and leave behind the research and treatment threads.

Share away... X

 

[GeorgeLG]

My heart goes out to Padraigh's family and friends. He sounded like a wonderful guy, full of life and hope. My heart also goes out to everyone in our community that are grieving his loss. It is humbling to imagine what it must take to bring someone to this decision. Respectfully, rest in peace and beautiful silence Padraigh Griffin.

 

[Nick47]

Share away... X

@DebInAustralia, I'm not sure it will help as I'm very solution focused. I avoid the suicidal threads like the plague, likewise 'kiss on the ear gave me tinnitus,' 'breathing spikes my tinnitus,' and a whole host of threads for general discussion where the paranoia and negativity would do me no good. I think in relation to Padraigh, he was solution focused too.