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Mayor Jeff Triplett

 

His Story

 

 

 

 

 

 

By Kathleen Sweeney

 

 

“My first ‘hit’ was on Oct 23 of 2000.” It’s the day all TN warriors recall well … the first one.  

 

Jeff was lying in bed with his wife six months pregnant. He sat straight up in bed with an “electrical nightmare going through the side of my face and it was so hard it was actually twisting my neck.” It lasted for what seemed like forever. When it got better he said to his wife, “I don’t know what is going on but I must have a raw nerve in one of my teeth or my jaw.” For the next three months he didn’t see anyone or do anything about it. Yet every once in a while it would just take him to his knees. 

 

Most of his pain happened at night as he laid down to sleep. It would start to fire shocks that would last 30 min to 2 hours. He says “I aged about 15 years in that (first) three month period.” 

 

When his wife gave birth and his first son was a day or two old he was taking care of him … or trying to … since his wife had a ‘C’ section and wasn’t able to do anything. He was getting debilitating “hits” and it was even scarier since he didn’t know the first thing about caring for a baby. The screaming of his little one was “the most painful deafening ride that resonated not only in his ears but was also hard to describe. It happened with every cry.” He finally asked for help at the nurses’ station, knowing they’d not be able to comprehend what he was going through. “I remember the look in the nurse’s eye like ‘You are gonna have to figure something out because this is the next 18 years of your life. If you can’t even handle one day, this is going to be a long road for you.’ We made it through that and I remember sitting on the floor saying to my wife ‘I’ve got to do something. I don’t know what’s going on. It isn’t getting any better. It is getting worse.” 

 

He went to see his dentist first because it was concentrated in his cheek and upper teeth area. The dentist sent him to a TMJ doctor. They ran tests and found nothing and did nothing. Next he went to see his general practitioner who happened to be away so he saw his associate. “I call him a horse doctor cause he’s an old guy who’s not going to give you medication.” As he sat there trying to describe the pain, when it happens and what seems to trigger it, the old doc looked at him and said “You’ve got Trigeminal Neuralgia”. “What? What? What the hell is that?” “You’ve absolutely got TN.” This is May of 2001.  

 

As he explains it Jeff recalls a feeling of relief that finally he found someone who wasn’t saying “I don’t know what’s going on with you”. But he also felt angst as he listened to what this actually meant. He was next sent to a neurologist in town who immediately put him on Tegretol and Neurontin and while he was on those he “absolutely could not function and it absolutely was not helping.” He didn’t feel anything good was coming out of it during the three or four months he was on them. 

 

Next he saw a neurosurgeon who said “You just let me know when you want me to open you up and I’ll take a look in there.” It was just at the beginning of the use of the gamma knife and he said that he would “fry that thing up a little bit and see what happens”. So Jeff allowed him do that and again it had zero effects. It didn’t change anything. It didn’t help. The very next day he was getting “hit” again.  That is when he made the decision to “go ahead, open me up, and see what’s going on”. They found that a vein was growing up through the trigeminal nerve. It was removed and he actually had six months worth of relief.  

 

But the pain had changed when it came back. “Instead of the electrical shock side of it where it’s twisting your head and you’re trying not to touch anything because it makes it worse, my body was telling me to get my fingers up into my mouth and into my cheek and push as hard as I could against it to try and make the pain stop and that would actually help a little bit. I’d shove my finger into my temple … my ear. The pain had changed ...”  

 

He finally got off the drugs, “the cocktail”; weaned off that and went back to the surgeon and said “I want (you) to go in and I want you to just start cutting. Just start cutting everything that you can see. I don’t care anymore. I have to do something besides be on drugs for the rest of my life.” This was in 2004 and would be his second MVD. When people ask about the pain he says “I allowed a neurosurgeon that I really didn’t know to cut open my brain, go deep into my brain by the spine and start cutting nerves … and I didn’t care. I wanted him to do that. Of my own accord. You don’t just allow people to do that.” He “luckily cut all the right nerves” during the surgery. Jeff ended up with his whole face, from his ear through his eye and down through his tongue and chin and his whole cheek becoming numb … and it still is to this day. That resolved it for over a year. 

 

Then, about 14 months later: “I remember sitting straight up again (in bed) and I just had an absolute total change of the pain. A red hot poker went through my eye and down into my cheek and teeth and it was absolutely what I would describe as a hot ice pick that someone was just pushing in, holding and rolling around. It was a totally different pain cause it was a burning … a crazy burn feeling. But my face is numb! So I remember I’m looking over at my wife, waking her up, and saying ‘This can’t be happening because my face is numb. What is this?’ I thought maybe it was a side effect. Ever since then that has been my pain.” (Eleven years now!!!)  

 

He went to the University of South Florida where there are headache and facial pain specialists and was diagnosed with cluster headaches. He feels his TN has transformed into this. It is very regimented and he has about 45 minutes to get a Sumatriptan shot which takes the pain away in 15 minutes. He goes nowhere without his shots and sometimes has to pull over while driving to take one. Plus, he now has pain cycles, which go from Oct to Jan and from March to June. During the “off” times he is not in pain. But when it is the “on” time he can be having the pain up to 10 times a day and it can be every hour on the hour. If he gets too hot or too cold he “just absolutely gets pounded.” Same if the weather patterns change too fast. “So mine has actually transformed. … MVD took away the fierce stabbing “don’t touch me” pain to when I came back around after the second (MVD) to the searing, ice pick, devil’s claw, searing 30 minutes of ‘kill me’ pain.” Interestingly enough it is the daily thought of “when is it going to happen again” that actually creates the mental anguish of the fear of it coming back that can be worse than actually having it happen. This has been going on since the end of 2005, beginning of 2006. But this past year it started a month earlier and lasted a month longer (Sept thru Feb) and just laying down while in cycle has been challenging. He has been known to sleep in a chair for days on end just to keep it at bay, which is new and “weird”. 

 

As Senior VP of a bank and being the Mayor of Sanford, Florida, trying to hold onto those two positions while being family man, the father of two boys, and all the involvement he has in the community it is “very tough to keep the reality of it all together.”  

 

And interestingly enough, this classic cluster pain is in the exact same location his Trigeminal Neuralgia was … but it’s a different pain. “I don’t know why that would be or how that ties in or if there is a tie in to the two.” 

 

“A long time ago … I reached out to the TN Association and did a lot of research on it and got on an email list - way back before blogs. I’d get emails from people and they would go back and forth and there was a lot of anger and a lot of angst and a lot of ‘poor pitiful me’s. I remember getting off of that. I’m done with that. I’m going to make my (own) way through.” That was about 2004. When he started getting hits a couple of years later and he was looking for the relationship between cluster headaches and TN he found some support sites for the headaches. “I kind of follow that a little bit. Not a whole bunch. I want to see if there is new research out there, new things happening.”  

 

Jeff doesn’t speak about his condition a lot. There are friends of his who partook in the fundraiser he did with Tina Johnson this August in Sanford, and they remarked “I never knew!” He takes pride in hiding it. Since his scar is along his hairline no one can see it when his hair is long enough. There is a hole about the size of dime that has no hair on it, where the head plate was screwed into the skull from the gamma knife, but that too is covered when he lets his hair grow out. When he is asked about it he makes the conversation short with a “Yeah, I have this facial pain thing … it comes and goes ... I’m alright.” 

 

So why did he finally decide to have his story told?

 

“What happened was a buddy of mine (we coach baseball together and sometimes I’ll just disappear. I don’t go very far from the house cause I know I got to be able to get back there if I know I’m ready to get ‘hit’ … if I’m talking to someone I’ll say ‘I have to go. I’ll be right back.’).

 

His wife and my wife are very close and over the course of time my wife explained to my buddy’s wife what I have and they were both in absolute shock. So he calls me one day and says ‘I have a friend of mine whose name is Tina Johnson and I’d like for you to sit down and talk to her about what you’ve got cause she just had some kind of surgery. I don’t understand it but it sounds kind of like she has this face pain stuff and it sounds a lot like you. Would you mind talking to her?’ I didn’t mind so he set it up. I met Tina and we sat and talked and it was like looking in the mirror. I was 16 years in. She had just had her operation, she was just out of it, and she was really struggling with ‘What’s happening? I’m not feeling the relief …’ You go into that surgery and you come out hoping it’s like fixing your knee and my knee is going to be good now. She wasn’t getting that. We spent a couple of hours together and she was saying ‘I need to do something.’ and you could see the pain in her eyes. So I told her my story and we went back and forth and I gave some keys, some insight. I said ‘You know you need to get involved in something … It’s not really my gig. I don’t talk about my life.’ Next thing you know she’s got her book of natural health and healing and the mind. And she gets back to me and says ‘I’ve got these guys that I’ve contacted and I want you to meet them.’ I agreed cause she made sense (and she literally put everything together) and she said ‘Listen, you’ve got a voice in your position (as mayor). I’d really like for you to share your story and be a part of this. I really want to raise some money. Will you help me raise some money? Will you help me do this?’ She kind of has pulled me out of my pseudo shell of not talking about it, so to speak. And the last couple of months have been interesting to me because I’m not really open in that sense. I don’t like people knowing … some of the frustration is that it is hard to explain. It isn’t something where you can look at someone and they say, ‘I see that. I can see your scar. Is it life threatening?’ You can explain cancer … everybody knows about it … you can explain a knee injury. But the small percentages of people who have this, when you say you have pain in your face, they want to know ‘What does it feel like?’ You can’t even describe it. You have to go into this whole thing about how you’ve got this nerve and there’s five branches and there’s three that go … ‘Well what causes it?’ We don’t know. ‘How do you fix it?’ Take handfuls of drugs and if that doesn’t work you let them cut into your head.

 

“Everyone has a different pain threshold. When I am talking about it I do mention that no matter who you are there is NO pain worse, I don’t care who you are, than head and back pain. Not to be sadistic but when trying to explain it I wish I could just touch them and let them feel just one hit. Just for a second. Just so they could understand that what they just experienced for one second I experience 10, 15 times a day for 30 minutes at a time. This is my life. So when I’m not in a good mood. Or if I look ‘road hard, put away wet for 6 months’ well, here’s the reason why.”

 

His advice would be to get to a neurologist or specialist right away and to do research early on. He hoped his was just going to go away. “The Good Lord wasn’t going to allow this to happen again tomorrow night.” So he reverted into himself. He couldn’t talk about it, couldn’t speak. Pure depression. His wife suffered along with him because she didn’t know if he was losing his mind or just didn’t really want the child she was carrying! “If you need to talk to someone go talk to someone! … I think that is very important.”

 

Then he spent 14 years trying to ignore it, not telling people about it and not wanting people to know that he had this “condition”. When he disappeared and people asked about it he always feigned it off as “not that big of a deal. I have this pain. I’ve had it a long time. It’s something I deal with.” He didn’t want anyone to know he spent an inordinate amount of time doing research about what was going on or happening with him for a lot of years. He says “I think there are a lot more people who have this who have not opened up or have not gone to see somebody, don’t think anyone else has it.” Just since the fundraiser and being on television he received at least 30 phone calls and 30 plus emails from central Florida alone. They are people who have TN that are reaching out to say they have the same thing and what they are taking for it; that they had an MVD and they want to talk about it. “It’s like they don’t have anyone to talk to that has the same thing. It’s so rare you’re always talking to someone who doesn’t know and when we do find each other it’s like we’re a little family. I don’t enjoy talking about it, but if I can help raise some money or get the word out that this is a condition that needs additional research, let me explain how this has affected my life over the course of 16 plus years. I need to do that. And in all honesty it is a little bit therapeutic. And to see the amount of people that came out for the baseball game and the motorcycle ride was amazing. You don’t realize how many friends you actually have. You shouldn’t just sit on it. Be so … hide the pain … private. I needed that.”

 

He ends with PFW!!! (Pain Free Wishes)

 

 

 

Introducing Todd E. Golde, M.D., Ph.D.

 

 

 

Todd E. Golde, M.D., Ph.D., is currently the Director of the Center for Translational Research in Neurodegenerative Disease at University of Florida (Department of Neuroscience) where he directs a robust program of scientific discovery aimed at translating basic discoveries in neurodegenerative disease into diagnostics and treatments for patients. Dr. Golde has joined the Facial Pain Research Foundation research team as a Co-Investigator on the “In Search of a Cure: Finding the Brain Signature Centers that Cause Trigeminal Neuralgia”.  The project is directed by Dr. John Neubert at the University of Florida McKnight Brain Institute.  Dr’s Mingzhou Ding, Marcelo Febo, Robert Caudle are also Co-Investigators.  Dr. Andrew Ahn, Chief Scientific Officer Pain/Headache, Eli Lilly & Co. is a Consultant.  I asked Dr. Golde to write a brief descriptor of his work on this Foundation Research Project.--

 

Michael Pasternak, Ph.D., Trustee


 

Towards Gene Therapy for Trigeminal Neuralgia

 

By Todd E. Golde, M.D., Ph.D.

 

If one reads the entry for Trigeminal Neuralgia (TN) on Wikipedia, the second paragraph begins with the statement “Although TN is incurable, its symptoms can be managed ….” Many who suffer from chronic TN will endorse the first part of this statement, but likely strongly disagree that symptoms can always be managed; however, gene therapy-based approaches may in the not too distant future offer better outcomes for patients with TN whose symptoms are not well controlled by current standards of care. Indeed, leveraging the world-class expertise in gene therapy at UF, multiple UF faculty are teaming up to evaluate whether novel gene therapy approaches can translate into transformative new therapies for TN.  TN is a potentially ideal candidate for development of novel gene therapies targeting pain, given its focal nature and the accessibility of the trigeminal nerve to direct injection of vectors that will carry genetic elements into the affected nerves.  Drs. Neubert, Caudle, Levites and Golde have already teamed up to show that in rodent models using gene therapy vectors already available, one can easily deliver genes selectively and extremely efficiently  to the trigeminal nerve. Notably, once delivered to the nerve cell, the genetic material within the gene therapy vector is stable. Thus, a single treatment could provide a lifetime of relief.

 

Although the UF teams’ studies are in very early stages, all involved in the project are excited and optimistic that they can develop a road map that will lead to a more effective therapy for chronic severe TN. Their next step is to see whether one can silence pain signaling in the trigeminal nerve following gene therapy. Such proof of concept studies are already underway. In these studies the team will deliver engineered proteins that can either induce or blunt pain responses in the trigeminal nerve. The engineered proteins that are being used respond to a modified drug in a way that either silences neuronal firing or enhances it. Thus, once delivered to the nerve cells, the response of that cell can be modulated and the team can see if the rodent’s response to facial pain can be blunted or enhanced.

 

If these critical experiments are successful, the next steps will be to develop a gene therapy that is potentially translatable to the human studies. The engineered proteins used in the proof of concept studies currently underway cannot be used in humans; however, one of the real advantages of the paradigms the UF team is establishing is that multiple different approaches and targets can be rapidly evaluated. Especially intriguing is the potential ability to use new gene editing tools developed by UF faculty member Dr. Edgardo Rodriguez to permanently delete a key protein involved in pain signaling within the trigeminal nerve. Such an approach might spare other important functions of the trigeminal nerve while selectively blocking pain signaling. Ultimately, the investigators involved believe that this highly targeted approach can overcome many of the problems associated with traditional  pharmacological based approaches to pain and  actually lead to markedly improved outcomes or even cures  for TN and other focal chronic pain syndromes.


 

 

 

 

 

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