Hello friends,
I am a 19 year old college student from India.I have read a few of your stories, and i understand all your pain.Because i have such pain too.My pain is yet to be diagnosed officially, but i am at my wits end about which doctor to visit.
My region of pain is,from occipital region to the top of the head.
I dont remember the exact date when my pain started... but i can definitely say that the pain is chronic after my wisdom tooth(upper right) was extracted. I had pain on the right side and i believed the wisdom tooth was causing it. The dentist(the son of the dentist, also a dentist,albeit young) said that wisdom tooth was a useless tooth, and it should be extracted.
I had it extracted on november first week last year, and from then onwards, i am in constant chronic debilitating pain. 24/7 pain, it does not go away for even a second.
The dentist gave me pills for the pain, it didnt work. On due course i have asked many dentists if extracting tooth could cause chronic pain(by damaging some nerves or something like that), all their answer was a definite no!
The dentist also asked for xrays to be taken, and it did not show anything.My root canalled teeth(RC done on march 2013) was also fine.
So after the dentist wasnt able to help me, i moved on to a nuerologist.(December first week)He was never able to diagnose me of anything. He always gave me pills for anxiety and depression(tricyclic antidepressants i believe).On the second session, seeing his tablets from first session had not worked, and seeing me worried, he ordered for a CT scan.I prayed that the CT should do good and point out to something, but nothing ! It was clean and i had nothing.( When i was younger, i had experienced bouts of pain in my stomach.It was chronic pain, and i had like one episode of pain in one month, when two episodes started, i went to a better doctor and he ordered a CT scan be performed. The CT scan detected that i had appendicitis, and after the surgery, the pain was gone, and my life was normal ! So i had faith in CT.Also i had consumed too many painkillers before this, so i had(and i think still have) ulcers because of them.This was when i was 14 years old).
He also asked to check if i had problems with my eyesight. I went to the opthalmologist and he found that i had only 0.25 axial power on both eyes and recommended me a pair of spectacles.He told me if i wore it for 2-3 months, it will get fixed on its own. But the nuerologist said that .25 power was nothing and asked me not to wear it if i did not like it, and it would not be a problem since i had no real difficulty seeing things.
So the nuerologist gave me further anti depressants, and in the final session said that all would be good, and i will get well. But this was not the case.

I stopped taking medications for a few days and hoped pain would leave me somehow.
Then i visited a ENT doctor, who checked both my ears, said there was slight infection and gave me some drops to clear my ears off it.He also asked if i had sinus problems, but i said that my CT showed there was no sinus problems. I did not know at that time that there are two different sinus.
Next i visited my second dentist. He was a nice guy.He checked my tooth, and gave me some idea about nueralgic pain. He also flattened the cap of my root cannalled teeth,so i did not have any problems with that.
He asked for an xray from the front to check if i had any problems with sinus.The Xray showed that everything was fine.In the second session, he gave me some local anaesthetic above my RC'd teeth to check if it was causing any problem.The pain did not subside.So he talked about some ECG to be taken, but the next day he asked me to visit another dentist and maxillofacial surgeon near my house. I explained my history to that guy, but he was not able to identify anything.I had researched a bit about my pain earlier.I thought of TMJ, but all three dentists said no.
I thought of trigeminal nueralgia, but all 3 dentists and nuerologists said i couldnt have that.
Also,By the time i had visited my first nuerologist, my left wisdom tooth was also causing headache! But it was a different pain. I did not care about this since my right side headache overshadowed this pain for a long time(until recently).
So i visited another nuerologist nearby, and he heard my story, and gave me an injection(raising my hopes, i believed he had actually found something).He told me the pain would go immediately or within 10-15 minutes ! Nothing happened, and the old man gave me some pills for emergency when i had a lot of pain and pills to have normally.After a week, during my second visit, he was surprised that m pain was still there. He did a physical checkup a second time, and told me that i was physically perfectly normal, my eye reflexes were good. So he asked me to go and visit a psychologist. I was not ready to believe that my pain was imaginary, but i was ready to give it a try.
So i visited an experienced phsycologist. After 2 sessions with a counselling guy in the same office(he only asked questions), it was decided that since the cause of my pain could not be found, since there was no physical evidence, my pain had to be imaginary, and that i had somatoform pain disorder. He also asked me to try changing my lifestyle( i am slightly obese and i dont exercise a lot, and use computer and mobile a lot, i know this is bad).The pills that he gave me, the counselling i took for 3-4 sessions had no effect, absolutely none. I gave up hope on him, and decided to stop.
After a few weeks, with so much debilitating pain, i decided to visit a fourth dentist.
Now this guy had knowledge on facial pain(he had studied it specifically), and he said he had seen cases like me. He told me i had myofacial pain disorder syndrome, and that nothing was wrong with my tooth and all. He was confident about this, and i decided to stick with him.He gave me pills for muscle relaxation and pain,and taught me mouth exercises(opening and closing). He told me that my jaw muscles are in tension, and i had to relax them.Now i had a habit till now to sleep lying on my stomach. Now here is some cause for my pain ! Also, i used to lie a lot with my head supported by hands and all, so my head and neck must have been stressed a lot. I realized this and hoped that i had finally found a cause.He also told me that i would have many symptoms, not just this pain. I researched a bit about this, and found that i had tinnitus ! I had not realized the ringing for so long ! My ears had been ringing all the time, but i realized this only when i researched on the internet ! So i almost confirmed that my pain had to be due to MPDS(myofacial disorder syndrome). He gave me muscle relaxant and pain killer(diclofenac i think, i forgot). This pill did have some effect, and my pain decreased by 50% !
After a few days, i had severe pain, and i had to change the pills. I had to change to a less powerful pill, so i was prescribed a pill with aceclofenac and muscle relaxant.After this, my pain was up again, almost like before. The dentist constantly asked me to change my lifestyle, and to go out and hang out with friends, and not be alone . My lifestyle at this point is like going to college everyday, and coming back to home and watching a movie,browse, play some online game and sleep. Just this. I do not have friends nearby, all of them are in college hostels. This is a bad lifestyle as he pointed, and he constantly asked me to change it. I was not able to do much about this.
The pain was not decreasing by now, and finally in one session he gave me pills for one month and asked me to come after one month, also change my lifestyle.I had also thought about rebound headaches, but i dont think this is my case. With no progress in pain relief, after sticking long with this dentist, i finally gave up and stopped my medication.
My pain is same as before now.
The only one time i had true relief was a strange incident. I could not take my pain one night, and i just hit my head with my fist like 5-6 times and pressed both sides.Suddenly i felt a cold tingling sensation, and the pain started to disappear magically! I told my mom that i thought that finally my suffering was about to end ! Saying this i slept, and woke up the next morning with pain. Yes i wake up with pain, i sleep with pain. I walk with pain, i talk with pain. I study with pain, i write exams with pain.I smile with pain, i cry with pain. People say nothing is constant. But my pain is.It just will not leave me.
To add to my misery, my left side started paining. I had incidents of severe pain near left eye for about same time each day, but they have somehow gone now. I went to a 5th dentist to check my left top wisdom tooth. He did scaling and cleaned my teeth, and filled my bottom two wisdom tooth(third molar) since they were decaying.
By now i have read of all types of headaches. Recently i reread about this occipital nueralgia. I looked upon the images of where this nerve is. It seems to match where my pain is. From the base, till the top. I had mentioned about this atleast once to one of the neurologist, but they declined it.
I recently also read about the nerve block test, to find whether one has occipital neuralgia.I think i must do this, but i dont know where to go, whom to visit. Here in India, some hospitals have bad reputation of charging and performing surgeries when they are not even required. Thats why i have been visiting only clinics and individual small scale hospitals.

I think i may have occipital nueralgia.
My symptoms are: tinnitus , chronic debilitating pain for more than a year now.
I dont feel that my eyesight is not good.My hearing is definitely bad, most probably due to tinnitus.Recently also the ringing change as if pressure is changing...when i change my head position.

All this, and i have this condition from since i was very small.
When i am seeing something for long, and i suddenly turn my head, i have felt extremely sharp devastating pain, but it goes away within few minutes.But the pain is horrible ! It disables be completely momentarily. None of the nuerologists cared about what used to happen long time ago. This happens very rarely, i would say like once in 4 years.


I would like your thoughts and feedback on this. I am not asking for professional advice. I would like to know if any of you have experienced similar pain and what course of action you have taken. Or maybe enlighten me on which doctor to visit.There are no doctors specifically for headache near me.No pain management centres, except for cancer( i feel pathetic thinking about going there, cancer patients have much more pain than this).
My pain is constant , medium intensity, but chronic.24/7.Nonstop.It is high when i wake up. I can even feel my pain when i sleep. I can feel the pain when i dream.

Thank you for reading this exceptionally long post.I pray that noone should have such horrible pain ever in their life.

Welcome mmrbest.

Hi mmrbest,

Welcome to the NeuroTalk Support Groups.

I am sorry you're experiencing so much pain. It sounds as if it's been a nightmare. I wanted to mention another forum we have here. It might be worthwhile checking it as well as this ON forum for posts regarding previous dental work. You can use the forum search feature too if you need.

Trigeminal Neuralgia Forum

Forum Search

Dentistry & Dental Issues

.

ty.

Will check them. Ty.