IMO- This is why it SHOULD now and always remain called "The Suicide Disease"-
Then perhaps doctors like the ones who didn't take HER pain seriously will think twice.
jujubeee
I agree.
Just because TN is also known as the “Suicide Disease” doesn’t mean you automatically are going to kill yourself. You will not kill yourself because TN is also called The Suicide Disease; I can see where unrelenting pain could cause you to end it all to get relief from torture.
If you tell someone that you have Trigeminal Neuralgia the chances are they have no idea where the nerve is or what you are even talking about. Ask them an hour later what you have and they probably won’t remember what it is or even remember the name. Many will tell you how bad of pain they have endured from something that hurt them. If you tell them that it is also known as the “Suicide Disease” they have a better chance of realizing the severity of TN and remember what you have and take you seriously.
This is my opinion and I have used the term when needed to help explain what I have and why I do or don’t do the things that now define my life. I respect others opinion and why they hate the name. I never would kill myself because of the moniker given this disease, I have asked the good lord many times to let me go to sleep and not wake up when it was at its worst. That had nothing to do with the nick name just the unrelenting pain.
Here is hoping we all have better days ahead.
Scott
Scott,we say Thank -You, Thank -You! You took the words right out of Gama's mouth. She said you put it just right! She has used the term more recent then in the past 20 yrs.She says it depends on who she's talking to. I have also used it trying to explain when gma's having a terrible day and my friends don't understand why she is being ugly.I have watched the looks on their faces when I say, "Gma has tn, "Gama has what is called the "suicide disease " the looks on their faces changed and they were more concerned at that point then worried about her talking ugly to us. Even her this yr new family Dr.said he knew little about tn and took it way more serious in his care of her even though it was good from the start once he knew it had been known as the "suicide disease " Her Dr. has been working hard lately to help control her pain it has been getting worse pretty fast this last 18 mo.'s She has app. 's with someone at least weekly.She goes to the U of M again next week. Wishing all the best. calling tn whatever best fits at the time and depending on who you are talking to. The best to ya all, PUNKIN
OMG! that poor poor lady, I feel for her so so much, I can totally understand how she felt as I'm going through the exact same thing right now. I too had bitten down on a hard piece of food, and now I am in excruciating pain and the UK NHS is absolutely useless.
1. I have been to my dentists a dozen times, had the tooth extracted, now I am in more pain than ever. My dentist cannot give me pain relief, I get told to see my GP.
2. I goto my GP and get prescribed Co-codamol for pain relief, its not working, makes me feel 10 times worst.
3. Phone out of hours emergency dentist, get an emergency appointment and get told to wait for things to settle (I am already 8 weeks post extraction).
4. I now have nowhere to turn, if I phone the out of hours clinic again, they will just refuse to see me. If I goto A&E I will just get sent away due to the nature of the problem (dental), you just get told to phone the out of hours clinic.
5. Suicide is the only option left, I see why that poor women did what she did.
I hate the UK.
On a footnote I would urge everyone not to give up; there is research on new treatments and drugs. I know it is not fast enough but is coming. Research all you can, I went through the dentist and the doctors and neurologist route without success at first. I got a new doctor and brought up what I thought I had and he agreed and started treatment. He told me that he wouldn’t have diagnosed TN and he has a sister-in-law that has it. It must be harder to diagnose than I thought, I haven’t been on that side of that fence. Research and you are your best advocate. I know the road is very bumpy but there are better days ahead I am sure. A positive attitude has helped me through this and with other things all my life. This site is full on info and supportive members, you are not alone in this.
Dallas said:
OMG! that poor poor lady, I feel for her so so much, I can totally understand how she felt as I'm going through the exact same thing right now. I too had bitten down on a hard piece of food, and now I am in excruciating pain and the UK NHS is absolutely useless.
1. I have been to my dentists a dozen times, had the tooth extracted, now I am in more pain than ever. My dentist cannot give me pain relief, I get told to see my GP.
2. I goto my GP and get prescribed Co-codamol for pain relief, its not working, makes me feel 10 times worst.
3. Phone out of hours emergency dentist, get an emergency appointment and get told to wait for things to settle (I am already 8 weeks post extraction).
4. I now have nowhere to turn, if I phone the out of hours clinic again, they will just refuse to see me. If I goto A&E I will just get sent away due to the nature of the problem (dental), you just get told to phone the out of hours clinic.
5. Suicide is the only option left, I see why that poor women did what she did.
I hate the UK.
This is so sad and so close for all of us. We all can understand reaching the end with this pain, but I just have to agree it is worth hanging on and hoping for more research and maybe one day better answers. I posted the other day about my frustration in finding a dentist who would even see a patient with TN, I live in a big city in the US and was having no luck. Had not been to dentist in years, since old dentist took out so many teeth before referring to neurologist and I am certain TN came from an injection during a root canal. So scared enough to go and then just get turned awaya again and again, yes understand frustrations for sure. It is not just the UK, finding treatments and answers with TN and other issues when you have TN can frustrate, and when we already are in dire pain more stress does not help! Dallas, hang in there, hard as it is keep seeking help, I will be praying for you, for everyone.
Dallas said:
OMG! that poor poor lady, I feel for her so so much, I can totally understand how she felt as I'm going through the exact same thing right now. I too had bitten down on a hard piece of food, and now I am in excruciating pain and the UK NHS is absolutely useless.
1. I have been to my dentists a dozen times, had the tooth extracted, now I am in more pain than ever. My dentist cannot give me pain relief, I get told to see my GP.
2. I goto my GP and get prescribed Co-codamol for pain relief, its not working, makes me feel 10 times worst.
3. Phone out of hours emergency dentist, get an emergency appointment and get told to wait for things to settle (I am already 8 weeks post extraction).
4. I now have nowhere to turn, if I phone the out of hours clinic again, they will just refuse to see me. If I goto A&E I will just get sent away due to the nature of the problem (dental), you just get told to phone the out of hours clinic.
5. Suicide is the only option left, I see why that poor women did what she did.
I hate the UK.
Oh Dallas please never give up! I'm not sure how things work in the UK but if you can go to see a general practitioner instead of the dentist and explain what you know about TN and ask to try a different medication then maybe you will get some relief. So many TN sufferers spend so much time at the dentist instead of getting help from a neurologist. No matter what just remember the pain does go away (no matter how briefly) and use those moments to appreciate life-a flower, a sunset, a pet, anything or anyone that brings you joy!
Thank you for your kind words, I am trying to hang in there.
Reading that report and reading up on other reports about Janette Warburton is just so upsetting.......
I live in the UK, I am white British and lived here all my life, so has both-sides of my parents family and their parents. I have to totally agree with how poor the health care system is, there is no help or the help comes to late, this has always been the same and its getting worst, thanks to our government.
All of us here in the UK pay taxes for what is meant to be one of the best health care systems, the NHS has become the world’s largest publicly funded health service (it is also one of the most efficient).
BUT! our government is so greedy, they actually put money before peoples lives even though the money in the first place is the UK tax payers money (not the governments).
Its so sad that this lovely lady actually took her own life because of all the pain she was in, all because of biting on something hard, the help was not there for her.
I feel the same, I have been through hell these past two months and the NHS system does not care. There is no help, even some of the health professional working in the NHS system actually go out there way to make things difficult for you, you can actually see the enjoyment on their face when they turn you away.
I feel I am dieing right infront of the health care system, the system does not care, so why do I pay my taxes ? If I stopped paying my taxes I would be taken to court and fined and put in prison if I then failed to pay. So what does that tell you ? us British work to keep the rich ''Rich'' its nothing to do with our health care because there is no health care.
I will have to contact my GP again Monday and plead for help, which will mean more drugs, but! drugs make me feel worst.
So what is left ?
I wish so much I had an answer for you as far as help, not living in the UK I can only feel your frustration through your words. Will any Dr see you that you pay for? I know that is not easy, I have no insurance and that sucks, but are there any ways besides the system? You deserve and need help. The story of Janette is totally heartbreaking, especially those last two articles that did not define TN, need to educate, even the Dr's! I know it is sometimes so hard with the medications, but if they can bring you just some relief. I have had TN over 10 years, went 3 years undiagnosed and it was hell, I still have bad days, but Dallas, I have good days too, I am so thankful for remission times and it can happen. I am in no way on a soapbox here, TN is the worst, but we care about you and so many here have found a way to live as well and we want you to. What is left is you continuing to fight on, hard as it can be. You are loved by your family and friends and by all of us here. I won't bore you with it all, but I face a lot each day with my now disabled hubby at the age of 52, he has lost a leg, in kidney failure, wheelchair...etc! But I know not only for myself, my pets and hubby I want to keep on! Be good to you and know we are all here, if you want to vent, talk, anything, not only on group but feel free to contact me off group. Maybe someone on here in the UK can help as far as your next step...and if you need to call a crisis line or try after hours help again? Take with you the TN info from this site. We all have so much, I sometimes can't believe I get through another day, but I do and you can too. When I am at my worst sometimes positive words are the last thing I want to hear, I want to say screw all that, I am at wits end, so I understand...but when we are at are lowest I truly believe we can get up and that Faith helps in that. Just know we are all here and care a lot.
Betsy
Thank you Betsy for your kind words and support, thank you to you all for listening. You are all so friendly and caring, not like us British, (we are rude and uncaring), sometimes I'm ashamed to be British.
Reading about Janette has really hit home how awful this pain is and what it can do, its frightening because its so close to home and I cant help think what Janette and her family must have gone through.
I have always been a happy chappy, always fun, cheerful and would do anything for anyone. I luv all the USA feel-good movies, luv all the glitz and glamor, especially DALLAS (the TV series)............... because living in the UK is so depressing, the UK's government zap the life out of you.
The upsetting thing is, the TN is also zapping the life out of me, it is changing me as a person which I hate with a passion. I have two amazing beautiful daughters aged 16 and 12, an amazing and supporting wife which I adore. I hide all the pain from my two daughters as I dont want them to see daddy suffering.
This TN has taken many of my teeth, still its not happy, it wants to take my life just like Janette's.
Its a living hell!
Mr. Dallas, God Bless for that wonderful family it sounds like you have! I never had human kiddos, but sure love my furry ones! Ironic, I lived in Dallas, now in Houston, and I sure love Texas, but a lot of that glitz and glamour you see on TV is not quite how most of us live, grin! While our system is sure different here it has issues as well, like us, the middle class that makes too much to get help, but not enough for insurance for me, hubby on Medicare, issues there, so I guess I am saying there are problems that I deeply believe need to be fixed in health care everywhere. I can totally relate to how TN changes you as a person, I have done my best not to let it, but I have my anger moments and days, things I used to do I can't and accepting that is hard. Like you, I lost many teeth, for truly no reason, sounds like you know about the states so I just kid I am a true redneck now....trying to make you smile a bit here! The last few years I have felt like my life has become hell between TN and hubby being hospital over 2 1/2 years, I believe my dogs have kep me sane, really! So you have that family, I know you want to protect them from your pain, but maybe it would be easier to share it just a little so they understand. Don't be hard on yourself, none of us expected this in our life, ever, that is for sure, but it is here for us, so nevermind the nickname of disease, it is good to make the point of the pain, but suicide is not what God wants us to do because if we are here we have more to do, believe that. I wish words could better display you are cared about. It will get better, never lose hope...Gentle hugs to you and your family,
Betsy
Punkin, You are welcome! I hope your gama finds some relief soon, We need to fight this together and learn and share all the info we can. All my best to your gama. Scott
punkin said:
Scott,we say Thank -You, Thank -You! You took the words right out of Gama's mouth. She said you put it just right! She has used the term more recent then in the past 20 yrs.She says it depends on who she's talking to. I have also used it trying to explain when gma's having a terrible day and my friends don't understand why she is being ugly.I have watched the looks on their faces when I say, "Gma has tn, "Gama has what is called the "suicide disease " the looks on their faces changed and they were more concerned at that point then worried about her talking ugly to us. Even her this yr new family Dr.said he knew little about tn and took it way more serious in his care of her even though it was good from the start once he knew it had been known as the "suicide disease " Her Dr. has been working hard lately to help control her pain it has been getting worse pretty fast this last 18 mo.'s She has app. 's with someone at least weekly.She goes to the U of M again next week. Wishing all the best. calling tn whatever best fits at the time and depending on who you are talking to. The best to ya all, PUNKIN
Dear Dallas, I am so very sorry for the pain your in and the lack of help your receiving.I WON'T tell you to hang in there! I HATE those words, I have heard them so much they make me sick! THIS TN STUFF IS _ _ _ _!!! I was so ready to end the pain. You mentioned you had 2 daughters, 12 and 16.I am sure you would die for them. I feel the same way about my 16 yr.old grandson (who has been with me most of his life) He has never known me without tn1, tn2, tmj, and migrains. HE IS MY BIGGEST SUPPORT! How do you keep it from your girls? My pain is with me all the time to some degree, it changes from second to second most of the time.So Ausman has seen it all in his lifetime.He has dealt with all the meds.and all there bad side affects. He has spent countless hours at emergency rooms. Would I have preferred for him not to have went through any of this, heck yes! I could write a long blog on his experience with dealing with grama's tn,but I believe his plans are to do that yet this summer.He is for the biggest part pretty layed back and quite.Yet he has no trouble explaining to anyone what tn is. Dr. app.'s at times he has went when I was unable to talk. Last week he offered to go and took control over the whole app. he knew my anxiety was over the top so he said he was going and said just before the Dr. came in, "Grama, I got this! He had it alright the app. could not of went better.Even the doc. was impressed and put him in charge of a couple things that even surprised me.(it takes a lot anymore to surprise me) I know I'm babbling Dallas and anyone else reading this. So sorry! The pain your in makes me feel just awful! The fact your getting no help angers me to no end.Last yr.in Oct. I had all I could take to the point I did plan my way out and was ready to act on it and I went sobbing to Ausman.(let me 1st describe my angel baby to you, he is 6ft. add 3 more inches for his afro,a size 13 shoe, and the biggest blue eyes you have ever seen) I was beside myself with pain,I found the words, "may I please check out?"The look on his face will NEVER leave me.He said, "No! GRAMA I STILL NEED YOU! Those big blues eyes were as big as dinner plates! New meds and some new drs. have made the pain bearable most days with even some good days here and there. The best way to explain is the pain no longer gets HORRIBLE just TERRIBLE! I have another mental health app. this afternoon and at this point in the game I need all the help I can get. I didn't think so just 3-4 months ago but there is HOPE! The Lord knew just how desperate I was and led me in the right direction even though I had lost faith the whole 9 yards. Dallas, I really will pray for you!!! God answered my prayers, maybe not excatly how I wanted, and if he will help me he will help you even if you are in the UK. Best to you and your family and praying you find good help and relief VERY,VERY SOON. Soft hugs, dawn
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Scott said:
Punkin, You are welcome! I hope your gama finds some relief soon, We need to fight this together and learn and share all the info we can. All my best to your gama. Scott
punkin said:Scott,we say Thank -You, Thank -You! You took the words right out of Gama's mouth. She said you put it just right! She has used the term more recent then in the past 20 yrs.She says it depends on who she's talking to. I have also used it trying to explain when gma's having a terrible day and my friends don't understand why she is being ugly.I have watched the looks on their faces when I say, "Gma has tn, "Gama has what is called the "suicide disease " the looks on their faces changed and they were more concerned at that point then worried about her talking ugly to us. Even her this yr new family Dr.said he knew little about tn and took it way more serious in his care of her even though it was good from the start once he knew it had been known as the "suicide disease " Her Dr. has been working hard lately to help control her pain it has been getting worse pretty fast this last 18 mo.'s She has app. 's with someone at least weekly.She goes to the U of M again next week. Wishing all the best. calling tn whatever best fits at the time and depending on who you are talking to. The best to ya all, PUNKIN
Chippy said:
Scott said:Punkin, You are welcome! I hope your gama finds some relief soon, We need to fight this together and learn and share all the info we can. All my best to your gama. Scott
punkin said:Scott,we say Thank -You, Thank -You! You took the words right out of Gama's mouth. She said you put it just right! She has used the term more recent then in the past 20 yrs.She says it depends on who she's talking to. I have also used it trying to explain when gma's having a terrible day and my friends don't understand why she is being ugly.I have watched the looks on their faces when I say, "Gma has tn, "Gama has what is called the "suicide disease " the looks on their faces changed and they were more concerned at that point then worried about her talking ugly to us. Even her this yr new family Dr.said he knew little about tn and took it way more serious in his care of her even though it was good from the start once he knew it had been known as the "suicide disease " Her Dr. has been working hard lately to help control her pain it has been getting worse pretty fast this last 18 mo.'s She has app. 's with someone at least weekly.She goes to the U of M again next week. Wishing all the best. calling tn whatever best fits at the time and depending on who you are talking to. The best to ya all, PUNKIN
That poor woman...