Hi everyone,
I allways thought that Trigeminal Neuralgia was also known as the "Suïcide headache/desease", but now I have heard the same terminology used with Cluster headaches.
I don't want to look a fool by using the wrong terms while explaning to someone about TN, so can anyone tell me something about this?
Thanks en take care!
Ellis.
For years TN was known as the Suicide disease, cluster headaches are nasty and I am by no means diminishing how bad they are, I have had them, but they are no where near the pain of TN. Also a lot of doctors misdiagnose TN as cluster headaches so maybe that is where the name crosses over, but I have always seen it referred to TN.
A lot of us dont like to use the term Suicide disease,, because there is more help nowadays than before and more and more people are either living better through medication or surgery than years ago, and as I bet you may have found out , a lot of people that dont have TN think that by calling it the suicide disease, you are being dramatic!! I have had many people poo poo me and look at me like I am nuts when I tell them the nickname. I also dont think the nickname matters as much as getting a proper diagnosis and treatment, not that your question isnt valid.
If you go on wikipedia, the tn description does call it the suicide disease as well as webmd.
I actually posted a video on facebook the other night where that nickname was used and one of the people that responded said I was being harsh and dramatic, even though the video was a doctor saying it....ya cant win sometimes, lol
Wendy/crashgirl
When I was first diagnosed with cluster headaches I kept seeing "suicide headaches". Then when I was properly diagnosed with TN I saw that term again referring to TN. Like Wendy said, I think it comes from misdiagnosis. Since I do not have cluster headaches, I couldn't compare the pain.
The suicide disease name comes from a time when there really was not treatment for TN. So patiecents very often committed suicide at the time.
I usually tell people the other name for TN when stressing how serious and painful the disease is. Just the mention of suicide gets people’s attention and they usually listen better. It’s a bit like newspapers use flashy headlines to get people’s attention. I know it’s a bit low to do that but hey it works for me.
When I first got diagnosised I did not like the term suicide disease. It felt like the doctors were trying to scare me. Now I know they were just trying to stress how serious this disease is and giving me information on TN. Really it dose not matter what you call TN it is a horrible disease and one that often too many of us must fight for fair treatment and be treated with dignity.
Thank you all very much for your answers.
They all feel right and are very wellcome.
I’m glad that I am not the only one who read/heard these term used on TN.
Thing is, the term was used by an neurologist on tv (!), he said :”… Clusterheadaches are the most worst pain there is and that’s why it’s often called ‘Suicide headache/pain’. …”
As an TN type one sufferer I felt as if my pain, which is never spoken about on (dutch) tv, was suddenly called less painfull or something. I think mainly because I always read and heard that TN was the most painfull and therefore called SD, and I must say it felt like that was the truth.
When I first was hit by TN, the pain was so very intens, I instantly wanted to die just to get away from the pain. They have to put me on heavy dose of morfine to kill the pain instead of me.
Very stupid, I know, but I also felt like again something was taken away from me (as TN did with allmost most of my life).
Like ‘let this awfull pain at least being called the worst’ or something, was taken away .
Now I have something less to use by talking to others explaining how bad the pain is (like Kari says, you”re so right, thank you for saying it like that. I also like the Veyron!).
And the people I used the term SD to to explain TN, and saw that tv show, must now think I’m a lyer… Or a dramaqueen.
I want to appoligize to anyone with clusterheadaches (crashgirl and others) or any other kind of suffering from heavy duty pains. I don’t want to say anything about or judge you’re pain. Please forgive me if it looks that way.
This is just me, a tiny TN sufferer in a big world full of people who don’t understand how painfull TN is, and I sometimes feel even smaller than before by something someone (like this man on tv) is saying….
Less (or better: no) pain for everyone,
Ellis.
Ellis, I was lucky, when my neurosurgeon did my MVD, he also found a blood vessel that was causing my migraines/cluster headaches and they are gone. Lately I have been having horrible sinus headaches that are setting off some of the TN pain again, which sucks!! But I am dealing with one of the best neurologists in the country who is helping me get an auto-immune disorder that caused all the TN under control!!
Please dont ever think you have less to tell someone!! I always felt like if they didnt get it (which has caused me to drop some friends) then I dont need them around. It sounds harsh, but having someone around that doesnt believe you is too much stress.
Also you are dealing with TV, and at least here in the states, the newspeople etc are only trying to sensationalize everything, so I take everything on TV with a grain of salt
Wendy
Ellis said:
Thank you all very much for your answers.
They all feel right and are very wellcome.
I’m glad that I am not the only one who read/heard these term used on TN.
Thing is, the term was used by an neurologist on tv (!), he said :”… Clusterheadaches are the most worst pain there is and that’s why it’s often called ‘Suicide headache/pain’. …”
As an TN type one sufferer I felt as if my pain, which is never spoken about on (dutch) tv, was suddenly called less painfull or something. I think mainly because I always read and heard that TN was the most painfull and therefore called SD, and I must say it felt like that was the truth.
When I first was hit by TN, the pain was so very intens, I instantly wanted to die just to get away from the pain. They have to put me on heavy dose of morfine to kill the pain instead of me.
Very stupid, I know, but I also felt like again something was taken away from me (as TN did with allmost most of my life).
Like ‘let this awfull pain at least being called the worst’ or something, was taken away .
Now I have something less to use by talking to others explaining how bad the pain is (like Kari says, you”re so right, thank you for saying it like that. I also like the Veyron!).
And the people I used the term SD to to explain TN, and saw that tv show, must now think I’m a lyer… Or a dramaqueen.
I want to appoligize to anyone with clusterheadaches (crashgirl and others) or any other kind of suffering from heavy duty pains. I don’t want to say anything about or judge you’re pain. Please forgive me if it looks that way.
This is just me, a tiny TN sufferer in a big world full of people who don’t understand how painfull TN is, and I sometimes feel even smaller than before by something someone (like this man on tv) is saying….
Less (or better: no) pain for everyone,
Ellis.
Thank you so much Wendy!
I''m very happy for you to have found such a great neurologist and hoping you can get you're auto-immune disorder under control.
Can you tell me what kind of auto-immune disorde you have?
Wishing you all the best,
Ellis.
It has no name...so I want it named after me!!!! lol.....its a combination of small fibre neuropathy and Sjogrens...but I dont really have sjogrens...basically I get shooting pains like TN in my arms and legs, my feet and hands get numb or feel like they are on fire, I developed Carpal Tunnel in both hands, literrally overnight ( never had it before) and my legs ache all the time..I can only walk about 1/2 hour and then the muscles tighten up and the pain starts. It is really bizarre to say the least. The neurologist believes I either had a sinus infection that was viral (had many of those ) and it caused my body to react or I picked up something weird with what I do for a living --I write estimates on cars for insurance and its common for me to have to get in or open up vehicles with blood in them etc...I personally believe it was the sinus's that did it, because I have been telling docs for years (before I started insurance work) that something was wrong with my legs, but they kept blaming it on my thyroid disease..
I go back on tuesday to Johns Hopkins, it will be the first I am back since diagnosis, so I will find more info then...its weird not being able to say a name of what I have?
Wendy
Ellis said:
Thank you so much Wendy!
I''m very happy for you to have found such a great neurologist and hoping you can get you're auto-immune disorder under control.
Can you tell me what kind of auto-immune disorde you have?
Wishing you all the best,
Ellis.
That really sucks Crashgirl! You have a lot of different things going on there, but seems to me they're certainly connected. Connecting the dots is very difficult so I'm glad for you that you seem on the right track and having found a doctor that fits you.
I'm still touching in the dark myself... I also have a kind of sinusproblems, I have TN type one in all three branches, I have MAV and severe Eustachian tube problems (tinnitus, pulsatile tinnitus, over/underpressure in the middle ear cousing sucked in or bulbed eardrums, clogged eustachiantubes). All at the same side of my face.The TN and MAV started two and a half years ago.
I wish you all the best, good luck tuesday!!!
Ellis.
crashgirl said:
It has no name...so I want it named after me!!!! lol.....its a combination of small fibre neuropathy and Sjogrens...but I dont really have sjogrens...basically I get shooting pains like TN in my arms and legs, my feet and hands get numb or feel like they are on fire, I developed Carpal Tunnel in both hands, literrally overnight ( never had it before) and my legs ache all the time..I can only walk about 1/2 hour and then the muscles tighten up and the pain starts. It is really bizarre to say the least. The neurologist believes I either had a sinus infection that was viral (had many of those ) and it caused my body to react or I picked up something weird with what I do for a living --I write estimates on cars for insurance and its common for me to have to get in or open up vehicles with blood in them etc...I personally believe it was the sinus's that did it, because I have been telling docs for years (before I started insurance work) that something was wrong with my legs, but they kept blaming it on my thyroid disease..
I go back on tuesday to Johns Hopkins, it will be the first I am back since diagnosis, so I will find more info then...its weird not being able to say a name of what I have?
Wendy
Ellis said:
Thank you so much Wendy!
I''m very happy for you to have found such a great neurologist and hoping you can get you're auto-immune disorder under control.
Can you tell me what kind of auto-immune disorde you have?
Wishing you all the best,
Ellis.
Quick question Wendy. My TN and ATN had been under control since my MVD. I have had Restless Leg Syndrome for a few years. I get a lot of twitching and cramping of my legs and arms. It's under control with medication. I also have Raynaud's on my hands and feet. (Circulation issues basically. It's primary meaning that I don't have it along with something else like Lupus or Rheumatoid Artheritis. I just have Raynaud's.) I was told I have some autoimmune issues (iGg and iGa) but nothing that needs medication or close attention per the doctor. Lately (past 6 months or so) I keep getting shocks on the bottoms of my feet, sometimes the tops. It feels like when you get pins and needles after your leg starts waking up after it fell asleep, except there's no numbness and the pins and needles are 10x more painful and I feel electric shocks and like the soles are on fire. Does that sound familiar to you? I have also been starting to have intermittent pain just like that on one of my breasts the past month. My GP had nothing to say about the feet and neither did the neuro. Haven't spoken to them about the breast pain yet. I've lost all confidence in doctors these past 10 years that I no longer feel like I'm going to get an answer from them for anything. Thanks for listening.
crashgirl said:
It has no name...so I want it named after me!!!! lol.....its a combination of small fibre neuropathy and Sjogrens...but I dont really have sjogrens...basically I get shooting pains like TN in my arms and legs, my feet and hands get numb or feel like they are on fire, I developed Carpal Tunnel in both hands, literrally overnight ( never had it before) and my legs ache all the time..I can only walk about 1/2 hour and then the muscles tighten up and the pain starts. It is really bizarre to say the least. The neurologist believes I either had a sinus infection that was viral (had many of those ) and it caused my body to react or I picked up something weird with what I do for a living --I write estimates on cars for insurance and its common for me to have to get in or open up vehicles with blood in them etc...I personally believe it was the sinus's that did it, because I have been telling docs for years (before I started insurance work) that something was wrong with my legs, but they kept blaming it on my thyroid disease..
I go back on tuesday to Johns Hopkins, it will be the first I am back since diagnosis, so I will find more info then...its weird not being able to say a name of what I have?
Wendy
I have had cluster headaches and I can see why it would be classified as a suicide disease, the same way that TN is. The pain comes on fast and horribly painful. It is difficult to stop it, and it will usually come in clusters of 5-8 days. Think I would call them both the same thing, even though they are 2 different types of pain. They are both bad.