Trigeminal Neuralgia - Jeff's Story
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- Опубліковано 29 вер 2024
- Meet Jeff, Jeff is from Hull and suffered a condition called Trigeminal Neuralgia, otherwise known as 'suicide disease'. Learn about his journey and treatment received by Consultant Neurosurgeon Mr Kenan Deniz, at Nuffield Health Leeds Hospital.
Find out more about the Centre for Spinal and Neurosurgery at Nuffield Health Leeds Hospital: bit.ly/2P6B8pH
Find out more about Consultant Neurosurgeon Mr Kenan Deniz: bit.ly/2uWe4AB
Hi all. Next month it'll be five years since my MVD surgery and still zero pain. Thanks for your good wishes and I'm so pleased for everyone who has had a similar outcome. For those who are suffering, please just get it checked and be persistent, but bear in mind that not every head pain is due to TN. The trick is to speak to someone who knows how to differentiate between eg toothache and TN. If your dentist doesn't know anything about TN then change dentists. Best wishes to all, and much respect to Kenan Deniz. BTW the video was good fun to do :-) Jeff Axe
Thank you for the update. It gives hope to people suffering from this horrible illness.
Just found this , and it is very comparable to mine. Carbamazepine has helped me over the years, but side effects are not good. Found out I am a candidate for MVD. Such a relief to hear that. I just need to wait for the OP
It's always good to see a fellow person with TN who has successfully overcome this beast. Good on you and to all who made it possible! 👏👏👏
I have TN, ON,MCAS, Achalasia, PCOS, AVM of the occipital lobe. I take Zyrtec Montelukast, Metformin , pregablin
and ketotifen drops for the eyes. I use bendable straws to drink. Eating pain free foods helps. I’m almost getting to remission. The attacks are milder. I have been sick for 3 months.
As a Turk, I felt proud of Dr.Kenan
@Ron Krikorian Antalya..But i live in London
@Ron Krikorian I am a medical doctor.How about you?
I am in Pakistan with TN started in 2015, I am controlling it with medication, but I am taking high dose of tegral. 8 tegral 200mg, 2 gabica 150 mg and 2 tablets of tramadol HCL daily, these medicines are affecting my vision, and I have serious problems of doing my office work. Here in Pakistan some doctors said they can operate TN, but I am not sure what to do?
Hope
It's horrible. You never know when a severe episode will strike.
I'm not quite at a year anniversary of this surgery. I almost didn't want to watch this video, sort of not wanting to be reminded of how horrific this condition is. My heart goes out to anyone who has experienced this and am so thrilled for Jeff's relief. I had it for ten years and got to where the medication didn't help anymore. I didn't consider suicide but understood how one would and could see that I could get there if I couldn't get relief. I am so grateful for the smallest of things now and even with some facial numbness and hearing loss from the surgery, the trade for the pain was so worth it.
I suffered for years with nerve pain in my neck, jaw, face and head. There is absolutely nothing other than surgery that can stop it. No tablets, no massage therapy, nothing! I would literally sit in the same position for hours, terrified of moving for fear of agitating something. I couldn't lie down for more than a few minutes. I slept in a chair for two years with my head propped against a pillow. I had multiple nerve blocks that had no effect other than the first day. There were times if someone said if you rob this bank and your pain would be gone ... I would have done it and not feel the least bit of guilt. Worst of all are the people who think that you are over reacting or lying about the level of pain that you have to deal with on a daily basis! For 5 years I was a spectator who just watched everyone else's lives go on while I sat in pain purgatory. Finding the right surgeon who understands that this is so debilitating some people would rather die than live with that level of pain! Cheers ✌ ❤
You just summed my life up. I have seen every kind of doctor. As a matter of fact I go see a neurologist today.... so I am going to take my finding to her cause she really don't know what's wrong with me.. I been telling the doctors for years that it was the nerves in my head.. I guess since I am not a nurse or doctor they didn't want to here it..
@@mrsbell85jb Sadly I can relate. 90 % of the Doctors I saw were useless in offering any solution other than tablets for pain ...which can become a problem when your body becomes tolerant to them. It always came down to if we can't see it there must not be a problem. I had a massage therapist who I told if you are going to touch my face, neck or head please be very gentle. That woman and her fingers went at me like a hyperactive typist ! I literally walked out in tears cursing her. I am just happy I found an understanding surgeon who actually wanted to know as much as I did what was wrong with me. I had 4 discs in my neck that were hitting nerves. MRIs would never show it unless it was actually happening while I was in the machine. That is exactly what happened. I think my 4th MRI showed the one disc hitting the nerve. During the surgery he saw the true mess I had been living with. Sorry for rambling lol. I truly hope you are feeling better and have been able to find even a little bit of relief! ✌❤
@@BOLLOCKS1968 I went to another dentist and she called it "TIC" something" and I told the neurologist and she act like she was mad that she didn't find out first.
The only reason why she said that I didn't have it was because I still brush my teeth. Yes, I had all the other symptoms.. I didn't think she cared.
So, she diagnosed me with it I told her that it do sometime hurt but, I just still have to brush my teeth.
I found out I had mercury poisoning from silver fillings. Had them removed and mostly free 5 yrs later.
@@BOLLOCKS1968 sorry but did you get help?
I have been dealing with the worst pain known to man since 2013. Had micrivascular decompression & 2 gamma knifes, nerve blocks. Now i am dealing with anethesia delerosa. Living a "life of pills" taking gabapentin. Only Dr. Jesus can heal me. Doctors cannot cure this horrible disease. I will have to try to cope with this for the rest of my life. Does anybody that has TN have anything they would like to comment on this?
I have aTN (atypical trigeminal neuralgia). Its similar but a dull toothache like pain rather than sharp stabbing pain. I also suffer from vertigo and light headedness which I believe is related.
Look at prolotherapy for trigeminal neuralgia on UA-cam. I have been getting prolotherapy treatments for all my weird sensations I've been having since 2016. TMJ pain, vertigo, shooting pain causing headaches, neck pain, numbness on my arms and legs. My Primary doctor would tell me nothing is wrong with me. So I found Prolotherapy on my own. Pay out of pocket. Not my provider. But don't care because this has helped me so much. Was my last resort on doing something because I wanted to give up. Hope it will help someone else. 🙏
Sadly, this is the 1st video I have ever seen on TN. I was diagnosed in 2002. Unfortunately, I am not a candidate for MVD😞😞😞
I'm so glad to hear that everything went well. I had this surgery 2 years ago today, and I'm still pain free !
@Ron Krikorian Hi. It's been 3 years and 1 month now, and I'm still pain free. How are you doing ?
@Ron Krikorian I had the microvascular decompression surgery (MVD). I suffered torturous pain on and off for over 3 years before the surgery. The mid and lower branch of the trigeminal nerve were affected in my case. Have you considered having this kind of surgery ?
@Ron Krikorian Are you taking Carbamazapine (Tegretol) ? Thats what I used to take. Have you tried any other procedures yet ?
@Ron Krikorian I sent you another post but I see that it didn't even show up (?)
Anyway the MVD surgery isn't for everyone. It depends on what the MRI shows. I've seen people in the comment sections, that have said that their MRI didn't show the cause of their Trigeminal Neuralgia, and they had to try other procedures instead.
Tegretol does have nasty side effects, but it worked really good for me in the beginning, but then lost it's effectiveness.
I'm so sorry that you're suffering. People that have never had this kind of pain, have no idea what TN patients go through. It's hell on earth !!!
I hope that your doctor can quickly devise a plan for a treatment that can bring you relief. Hang in there ! I'll be praying for you.
Wherever I touch my cheeks I feel headache but I don't feel pain in my face now I'm confused if I have TN, can you tell me what was your symptoms?
Its genetic.
My Grandmother had it. She had the surgery where they cut the whole nerve , late 50s early 60s. She was in her 60s, not happy with the results. . My Daddy was 65 when his started driving him crazy. He had his nerve cauterized in 1983 good success.. Im 77 and I have it. But only have attacks a few times a year thank you God. My daughter, who's 53, has it with intermittent attacks.
Thats a gene they need to find and wipe out. When those attacks come, it does make you suicidal for the endurance of the attack.
Thanks for this information ....Brahmi vati from Planet Ayurveda are good results on Trigeminal neuralgia
Hi there. I think I have this. I am managing the pain with 10mg of Amitriptyline ever night. This generally keeps it at bay but if I forget to take a dose the pain comes straight back. Interestingly, I also suffer with vertigo which I believe is related via the Vestibulocochlear nerve and superior cerebellar artery. Has anyone had similar issues?
I deal with this pain everyday, and honestly it's freaking hell dealing with this pain , l take gabapentin 600 and it helps a little bit, but I get horrible migraines,
Hey there 😃 I take a Tylenol with gabapentin and it works for the headache. I take Zyrtec too, so it takes care of high histamine brain fog.
Arkadaş burda bile karşıma türk çıktı 😂
My father had this for years. An operation worked for him for a few years but then it started coming back and My dad had another operation. He says cold air on his face can trigger the pain but it has definitely been better.
No relief for my husband with this surgery, also no relief with gamma knife either. This man lives with so much pain! I don’t know how to help!
Does he have silver fillings? Test for heavy metals/mercury. Can also be herpetic lesions.
Hi get in touch with dr.Takuro Inou from Japan,it is best of the best neurosurgeon for TN,will help for sure!
I called my TN kamikaze headaches. Horrible pain and life
Congrats
I have had it for 20 years in both size of my head. I can not be treaded😢 But it is good for you
I've just been diagnosed with this,and I've never felt pain like it, I'm same I don't wanna go out too afraid to eat drink incase I get pain even touch is so painful and paracetamol foesnt work
@Jack Warner ill give it a try , I had a episode last night
God Bless you and your Drs. man. So glad you could find help.
Hi, my husband he have TN can you tell me please where i find the doctor for this surgery .Thank you
Hi get in touch with dr.Takuro Inou from Japan,it is best of the best neurosurgeon for TN,will help for sure!
My mother was diagnosed with this. Her neurologist wrapped the nerve in Teflon and, believe it or not, it really took away the pain in her head. She's had no problems for years now.
REALLY? So you mean TN is curable? My brother is just diagnosed the other day.
I have a question if anybody can know this.. Can you get a TN from injuring the nerve in chin from syringe? Thank you
@Jack Warner i am glad you got rid of it, I am still not sure if I have TN or TMJ .. waiting time for examination in our country is long no matter if you pay for service.
The solusion?
SO TRUMP WAS CONNECTED TO JEFFS STORY ! WOW