God Bless you Bobby. I hope the procedure was a success and that you are now pain free. It's great reading everyone's comments, knowing that I'm not alone in my struggle. It is my prayer that all headache suffers get the relief that we desperately seek.
And I thought I was dealing with folks who were oblivious to what I was dealing with. It's both refreshing to know I haven't lost my mind and that there's others who know how to relate to me. I just wish the entire medical community would be receptive as what the doctors seem to be in this video. As a a retired Physician's Assistant it's really hard to convince some doctors that there's such a thing as pain this bad. From the bottom of my heart thanks to those who can relate to what I've said.
i've had occipital neuralgia ever since i was born, and it went undiagnosed until just last week. i thought i was crazy, the doctors even though i was imagining things. i'm so sorry that you were in that much pain, but i 100% understand how you feel! mine is on my lower right back side of my head, and it feels like i'm being stabbed and it is a pain that i've never felt anywhere else. i hope that this works for you, and that you are feeling better soon!
I too have cervical neuralgia from having cervical kyphosis. The pain is exactly like you describe and almost in your exact spots (worse on left side of base of skull). This is the worst pain I've ever had, my headburns, feels like I'm being stabbed. I've had tremendous pain everyday (mostly at night) for 3 months that initiates temporal migraines. It has been so debilitating that I am on disability from work. I feel helpless and depressed. I've tried everything from anticonvulsants, pain meds,
BOBBY: i hope you feel better,really,i have GLOSOPHARYNGEAL neuralgia myself.
you have lost friends beacause of your condition i heard your wife,let me tell you they were not reall friends,friends don´t abandom someone with this,friends have to understand that you may have change your mood beacause of the pain.
his video has made me feel emotionally better, i was diagnosed with occipital neuralgia, although i am not as bad as bobby i understand the pain he is in, unfortunately i do not have insurance and nerve blocks did not work, not only did they not work they are expensive. thank you for posting up this video. i hope that someday i will feel better...
I too have trifeminal neuralgia as well as occipital neuralgia... and this surgery is well worth it... Bobby, Amy and them their daughter came to be with me for my surgery and they helped me through it.... Now I am helping others...
I also have trigeminal and occipital neuralgias (and tmj)....I finally know that it's not "all in my head" so to say...i have been taking narcotics for years, and am tired all the time....i thank God for this video because it shows that there is hope...i pray that this man is still doing well...he has a good wife...when i was diagnosed, my wife thought i was just a "druggy"so to say...she didn't understand what i went through..having a good wife is a blessing..i am getting this done soon. amen.
i have occipital neuralgia and i am about to get this done in july. is it worth it? i am very scared! i have had this for the last 3 years and I am at the point where i can no longer work. I am only 22 years old i want to have a life a head of me! please someone let me know more information. I am so scared.. . even though i have gotten a lot of info from my doctor i would just like to know from someone who has had it first hand..
sorry to hear you have this my friend, Im going through the same pain with my neck and lower neck, i have been diagnosed with Trigeminal Neuralgia, now looks like ive got Occipital too, hang in there buddy, hope you overcome this one day, all the best!
This is the video Medtronics shows you to sell you on their 75k stimulator. Occipital Neuralgia typically occurred after an event ie mine was a concussion 4 years old. You have 1 week to try the device. Which to me, felt like my head had fallen asleep. No, really more like waking up to the sensation of pins and needles in my head. Which was a wonderful distraction from the level 9/10 pain I have been living with for 4 years. But it the end the stimulator made my pain worse.
i'm not double jointed.lol I think it's a little different for everyone, and what works for one person may not work for another. Nerve blocks gave me some relief, but the back of my head had no feeling. It does seem to move the pain around my temples and eyes after a block. Doctors sometimes do blocks differently also. A correct block will be done with about 5-6 injections done at different angles and depths. A single shot to the back of the head yields little result. HEAT...use heat. no ice!
Hi i have had this pain on and off for years but very far apart and only for a few days, it is so painful. It was great to see your video, now i know what the problem is, so thankyou i hope you are still painfree. When you first got this disease were the attacks few and far between and did it get progressively worse.
I've been through this for 3 years now. I've been treated for ON the whole time, but now i find out my brain CT was being read wrong and i have arnold chiari. DON'T trust doctors and DON'T trust whoever read your scans!! And if you are treated for chronic pain with vicodin, percocet, oxycontin...any of those opiates like i was STOP. Find a good pain management that treats pain with methadone. The other stuff ruins your life. Methadone is not much better, but trust me, it will not mess you up!
are you by any chance double jointed? Be careful, I later found out I have a condition called "Ehlers Danlos" that causes a rare form of Chiari and is made worse by decompression surgery!
@humasima I was diagnosed with occipital neuralgia, I get a lot of painful upper back pain, and neck and acute tension headaches, constant dull pain!
Howver seeing this video and reading symptoms on the net, it seems ON is different, I don't have migraine like headaches, sound and light doesn't irritate me while the headache is there, neither I have the strong flashes of pain the man in the video has! I never get the nerve feeling sending throbbing pain around my head, just tension headaches.
I honestly can't take it anymore. I am only 26 years old, and this all started abotu 10 months ago. I was drinking a glass of water, and it went down the wrong pipe, and I started to choke. I was coughing really hard, when all of a sudden, the whole right half of my head, over my ear, and neck begain to spasm. Ever since then I have had the rams horn pain, from my neck over my hear, across my head, and directly behind my right eye ball. Somtimes it goes away for weeks, but sometimes its awefull.
hey guys whenever i shake my head up and down or hit my jaw my occipitalis or whatever it is area hurts with a throbing pain. and also my neck is sore
Thank you for sharing your story. I am getting ready to go through this same procedure in 2 weeks after 9+ years of this pain. I understand what it can do to your life and family. My hope is that is as successful as the dr's promise...best of luck to you and your family!
TN & ON is caused by a subluxation in the top of the neck. The same subluxation CAN also cause acid reflux, fast heart/HBP, anxiety, chest palpitations, low back pain, dental pain, insomnia, panic attacks(especially unloading on sigificant others) muscle spasms(legs, back), shoulder pain and many more symptoms. The CAUSE of the problem is a whiplash, not an electrode deficiency. If the electrode works for the pain great, but it wont fix the other symptoms that will plague your life. Good Luck.
Dear Bobby and Amy, I totally relate to your video and I pray that you will have a Miracle. I have fought TN, Occipital N and Glossopharngeal N for 23 years. I am having to totally rely on God too. This so impoverishes you at every way. The Occip Pain is so severe... it goes right through my head into my teeth. Honey I pray relief for you. Part 1 of 2 comments, hugs, grace
Bobby, Your video tells my story to a T. (for Texas Sized Pain ;). Thanks so much, for documenting all of what we go through with this disease. I am so happy for you and to see, ONE person be cured/helped... 12 years of suffering here, on my part, with no hope left and much lost. I now have some hope!!!
Hi Bobby and Amy, I've been suffering from occiptal neuralgia for the past 7 years. I take pain killers for the pain get every single day, but at its worse I get injections in the back of neck every 6-10 weeks all year round. I can't do things that I use to, such as go bowling, pick up anything heavy, etc. I can't even carry a gallon of milk without triggering a headache. I have not heard of this stimulator. Thank you for sharing your surgery.
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
Thank you for sharing the ON videos. I finally found someone I can really relate to suffering ON. I tried many anti-inflammatory & anti-depressant drugs but none worked. I had RF lesioning and botox treatments & found temporarily relief for a few days. I had phenol treatments that lasted for a few months. Finally the ON took over & I was bedridden for months before I had the nerve stimulator implanted. Now I'm able to get out of bed with fentynal & lyrica meds but I'm still not able to work.
my story is the same as yours. the fentanal patch got me out of bed, and i became semi-functual, but unable to hold down a job; the chronic pain is simply too exhausting. i am unable to sleep through the night (sometimes waking every 15 to 20 mins) and i have a lot of difficulty sustaining concentration.
are you still suffering from this condition? do you know of any other treatments that may work? im afraid of the nerve stimulator implant, as well as nerve freezing...
Be very carefull witht eh fentanal patch, my best friend passed away from that. I too just began suffering from this, its very strange and is more concentrated behind my right eyeball, going to get a pain block injection soon hopefully it will help
Guys, I used the fentanal patch and it made me really sick too. Please be careful with that. I also had more than one nerve block. A couple worked for (very) temporary relief but one almost killed me. I went into cardiac arrest. MAKE SURE YOUR DOCTOR USES A FLOUROSCOPE MACHINE WHEN HE DOES THIS PROCEEDURE. IF HE DOES NOT THEN DO NOT ALLOW THE PROCEEDURE!!!!!
Yes, I still have this condition. HOWEVER, I do not experience the pain that I used to. This treatment has been a blessing and has allowed me to regain my life. I now am able to function again and "live" again. I do sometimes have some pain, but when I do, I just use my remote and turn up my stimulator. I still know that I am having "cycles" in my head, but I just don't feel the pain. I have even gotten to the point that I can actually turn off the stimulator for periods at a time.
Bobby - Your pain looks all too familiar. I've suffered since 10/2000. I have two medtronic neurostimulators and I still take medication. I'm managing, but I get pain everyday. I hope you get better. Godspeed
God Bless you Bobby. I hope the procedure was a success and that you are now pain free. It's great reading everyone's comments, knowing that I'm not alone in my struggle. It is my prayer that all headache suffers get the relief that we desperately seek.
lvrice75 1 week ago
I really like this video, I have the same thing. yes, it very painful,I hope u are still feeling great, i hope it will help me.
Chris
4blackbears 2 weeks ago
And I thought I was dealing with folks who were oblivious to what I was dealing with. It's both refreshing to know I haven't lost my mind and that there's others who know how to relate to me. I just wish the entire medical community would be receptive as what the doctors seem to be in this video. As a a retired Physician's Assistant it's really hard to convince some doctors that there's such a thing as pain this bad. From the bottom of my heart thanks to those who can relate to what I've said.
ladyhklberry 3 weeks ago
i've had occipital neuralgia ever since i was born, and it went undiagnosed until just last week. i thought i was crazy, the doctors even though i was imagining things. i'm so sorry that you were in that much pain, but i 100% understand how you feel! mine is on my lower right back side of my head, and it feels like i'm being stabbed and it is a pain that i've never felt anywhere else. i hope that this works for you, and that you are feeling better soon!
gingergrint 4 months ago
I too have cervical neuralgia from having cervical kyphosis. The pain is exactly like you describe and almost in your exact spots (worse on left side of base of skull). This is the worst pain I've ever had, my headburns, feels like I'm being stabbed. I've had tremendous pain everyday (mostly at night) for 3 months that initiates temporal migraines. It has been so debilitating that I am on disability from work. I feel helpless and depressed. I've tried everything from anticonvulsants, pain meds,
bdeja24 6 months ago
BOBBY: i hope you feel better,really,i have GLOSOPHARYNGEAL neuralgia myself.
you have lost friends beacause of your condition i heard your wife,let me tell you they were not reall friends,friends don´t abandom someone with this,friends have to understand that you may have change your mood beacause of the pain.
corporacionmonstruo 6 months ago
his video has made me feel emotionally better, i was diagnosed with occipital neuralgia, although i am not as bad as bobby i understand the pain he is in, unfortunately i do not have insurance and nerve blocks did not work, not only did they not work they are expensive. thank you for posting up this video. i hope that someday i will feel better...
jer2797 7 months ago
Bobby Joe and Amy have become my family....
I too have trifeminal neuralgia as well as occipital neuralgia... and this surgery is well worth it... Bobby, Amy and them their daughter came to be with me for my surgery and they helped me through it.... Now I am helping others...
bobbyjanson1 9 months ago
I also have trigeminal and occipital neuralgias (and tmj)....I finally know that it's not "all in my head" so to say...i have been taking narcotics for years, and am tired all the time....i thank God for this video because it shows that there is hope...i pray that this man is still doing well...he has a good wife...when i was diagnosed, my wife thought i was just a "druggy"so to say...she didn't understand what i went through..having a good wife is a blessing..i am getting this done soon. amen.
bartman67041 9 months ago
i have occipital neuralgia and i am about to get this done in july. is it worth it? i am very scared! i have had this for the last 3 years and I am at the point where i can no longer work. I am only 22 years old i want to have a life a head of me! please someone let me know more information. I am so scared.. . even though i have gotten a lot of info from my doctor i would just like to know from someone who has had it first hand..
jrpestal1911 11 months ago
I just found out i have Occipital Neuralgia :(
shortie419 11 months ago
what are the symptoms of this condition?
my heart goes out to those who are going through this! I hope enough research is being done to help people going through this!!!
I am really sorry!
TheYaom 1 year ago
sorry to hear you have this my friend, Im going through the same pain with my neck and lower neck, i have been diagnosed with Trigeminal Neuralgia, now looks like ive got Occipital too, hang in there buddy, hope you overcome this one day, all the best!
OZCJM 1 year ago
This is the video Medtronics shows you to sell you on their 75k stimulator. Occipital Neuralgia typically occurred after an event ie mine was a concussion 4 years old. You have 1 week to try the device. Which to me, felt like my head had fallen asleep. No, really more like waking up to the sensation of pins and needles in my head. Which was a wonderful distraction from the level 9/10 pain I have been living with for 4 years. But it the end the stimulator made my pain worse.
cmalk1 1 year ago
Comment removed
devinpetroff 1 year ago
I am told by my pain doctor that I have this too, not quite as bad as this man thankfully.
EarthREALTOR 1 year ago
i'm not double jointed.lol I think it's a little different for everyone, and what works for one person may not work for another. Nerve blocks gave me some relief, but the back of my head had no feeling. It does seem to move the pain around my temples and eyes after a block. Doctors sometimes do blocks differently also. A correct block will be done with about 5-6 injections done at different angles and depths. A single shot to the back of the head yields little result. HEAT...use heat. no ice!
humasima 1 year ago
Hi i have had this pain on and off for years but very far apart and only for a few days, it is so painful. It was great to see your video, now i know what the problem is, so thankyou i hope you are still painfree. When you first got this disease were the attacks few and far between and did it get progressively worse.
trish1342 1 year ago
I've been through this for 3 years now. I've been treated for ON the whole time, but now i find out my brain CT was being read wrong and i have arnold chiari. DON'T trust doctors and DON'T trust whoever read your scans!! And if you are treated for chronic pain with vicodin, percocet, oxycontin...any of those opiates like i was STOP. Find a good pain management that treats pain with methadone. The other stuff ruins your life. Methadone is not much better, but trust me, it will not mess you up!
humasima 2 years ago
@humasima So weird -ME TOOOO!!!!!!!
are you by any chance double jointed? Be careful, I later found out I have a condition called "Ehlers Danlos" that causes a rare form of Chiari and is made worse by decompression surgery!
lostinperception 1 year ago
@humasima I was diagnosed with occipital neuralgia, I get a lot of painful upper back pain, and neck and acute tension headaches, constant dull pain!
Howver seeing this video and reading symptoms on the net, it seems ON is different, I don't have migraine like headaches, sound and light doesn't irritate me while the headache is there, neither I have the strong flashes of pain the man in the video has! I never get the nerve feeling sending throbbing pain around my head, just tension headaches.
TheYaom 1 year ago
I have base of skull pain and a hiatal hernia
I have palpitations and skull pain...the only thing that releives the base of skull pain is laying down, which makes the palpitations worse.
Im pretty screwed it seems like.
minimullen 2 years ago
I honestly can't take it anymore. I am only 26 years old, and this all started abotu 10 months ago. I was drinking a glass of water, and it went down the wrong pipe, and I started to choke. I was coughing really hard, when all of a sudden, the whole right half of my head, over my ear, and neck begain to spasm. Ever since then I have had the rams horn pain, from my neck over my hear, across my head, and directly behind my right eye ball. Somtimes it goes away for weeks, but sometimes its awefull.
asta4125 2 years ago
hey guys whenever i shake my head up and down or hit my jaw my occipitalis or whatever it is area hurts with a throbing pain. and also my neck is sore
mmatazo 3 years ago
Thank you for sharing your story. I am getting ready to go through this same procedure in 2 weeks after 9+ years of this pain. I understand what it can do to your life and family. My hope is that is as successful as the dr's promise...best of luck to you and your family!
bumps227 3 years ago
TN & ON is caused by a subluxation in the top of the neck. The same subluxation CAN also cause acid reflux, fast heart/HBP, anxiety, chest palpitations, low back pain, dental pain, insomnia, panic attacks(especially unloading on sigificant others) muscle spasms(legs, back), shoulder pain and many more symptoms. The CAUSE of the problem is a whiplash, not an electrode deficiency. If the electrode works for the pain great, but it wont fix the other symptoms that will plague your life. Good Luck.
dempstead 3 years ago
Dear Bobby and Amy, I totally relate to your video and I pray that you will have a Miracle. I have fought TN, Occipital N and Glossopharngeal N for 23 years. I am having to totally rely on God too. This so impoverishes you at every way. The Occip Pain is so severe... it goes right through my head into my teeth. Honey I pray relief for you. Part 1 of 2 comments, hugs, grace
Halalsilks 3 years ago
Bobby, how's it going??? Is the stimulator still working just as well as it did at first????
Girl415 3 years ago
Bobby, Your video tells my story to a T. (for Texas Sized Pain ;). Thanks so much, for documenting all of what we go through with this disease. I am so happy for you and to see, ONE person be cured/helped... 12 years of suffering here, on my part, with no hope left and much lost. I now have some hope!!!
Thanks
Eric
EmanEzone 3 years ago
Hi Bobby and Amy, I've been suffering from occiptal neuralgia for the past 7 years. I take pain killers for the pain get every single day, but at its worse I get injections in the back of neck every 6-10 weeks all year round. I can't do things that I use to, such as go bowling, pick up anything heavy, etc. I can't even carry a gallon of milk without triggering a headache. I have not heard of this stimulator. Thank you for sharing your surgery.
RaegedyAnn 3 years ago
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
mom2ax4 3 years ago
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
mom2ax4 3 years ago
I'm sorry that you had to go through such pain but I am glad to find someone else that can relate to the pain that I am experiencing. I have had numerous nerve blocks but the pain just subsides and comes back stronger after a few months. A stimulator may be the next step. I am able to work and for the most part lead a normal life but I would hate for it to come to a point where I couldn't as I too have 5 children. I pray that God continues to bless you with a pain free life.
mom2ax4 3 years ago
Thank you for sharing the ON videos. I finally found someone I can really relate to suffering ON. I tried many anti-inflammatory & anti-depressant drugs but none worked. I had RF lesioning and botox treatments & found temporarily relief for a few days. I had phenol treatments that lasted for a few months. Finally the ON took over & I was bedridden for months before I had the nerve stimulator implanted. Now I'm able to get out of bed with fentynal & lyrica meds but I'm still not able to work.
brob645 4 years ago
my story is the same as yours. the fentanal patch got me out of bed, and i became semi-functual, but unable to hold down a job; the chronic pain is simply too exhausting. i am unable to sleep through the night (sometimes waking every 15 to 20 mins) and i have a lot of difficulty sustaining concentration.
are you still suffering from this condition? do you know of any other treatments that may work? im afraid of the nerve stimulator implant, as well as nerve freezing...
christineleventis 2 years ago
Be very carefull witht eh fentanal patch, my best friend passed away from that. I too just began suffering from this, its very strange and is more concentrated behind my right eyeball, going to get a pain block injection soon hopefully it will help
asta4125 2 years ago
Guys, I used the fentanal patch and it made me really sick too. Please be careful with that. I also had more than one nerve block. A couple worked for (very) temporary relief but one almost killed me. I went into cardiac arrest. MAKE SURE YOUR DOCTOR USES A FLOUROSCOPE MACHINE WHEN HE DOES THIS PROCEEDURE. IF HE DOES NOT THEN DO NOT ALLOW THE PROCEEDURE!!!!!
bobbysorrell1 2 years ago
Yes, I still have this condition. HOWEVER, I do not experience the pain that I used to. This treatment has been a blessing and has allowed me to regain my life. I now am able to function again and "live" again. I do sometimes have some pain, but when I do, I just use my remote and turn up my stimulator. I still know that I am having "cycles" in my head, but I just don't feel the pain. I have even gotten to the point that I can actually turn off the stimulator for periods at a time.
bobbysorrell1 2 years ago
Bobby - Your pain looks all too familiar. I've suffered since 10/2000. I have two medtronic neurostimulators and I still take medication. I'm managing, but I get pain everyday. I hope you get better. Godspeed
Thank you Dr. Whitworth, for trying to help him
TommySixGun 4 years ago