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Do i have Trigeminal Neuralgia !!please help!!
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Do i have Trigeminal Neuralgia !!please help!!

I think i have Trigeminal Neuralgia but the doctors and the psychiatrist will not listen to me, please if anybody can help i would be very appreciated.

It has be going for 12 months now symptoms where crazy for 2months with burning through my body everyday all day plus numbness and burning on my face checks which has been there for 12 months everyday.
The symptoms i get are.

Numbness/burning on my maxillary sinus area sometimes goes all the way to my left ear.
electric felling in my jaw
burning though my arms sometimes goes though my hole body
Vision problems.
hearing problems
A sting pain across my forehead witch causes a black out for about 1 second.
nausea that comes and goes.

This happens everyday and at first it was very scary causing panic attacks which i got over but now its just annoying and so exhausting. Is there anybody who knows what this is please help.

test i have had.
MRI - normal
CT SCAN - mild sinus infection(gone now)
EEG - normal
Eye's tested - normal
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11 Comments Post a Comment
It sounds like your problems go beyond trigeminal neuralgia, because you say you have burning through your arms and sometimes your whole body.   Have you ever had your TMJ assessed, to see if there is any kind of dysfunction there?  Have you ever been checked by a rheumatolgist to see if you have fibromyalgia?
Thank you for your comment SurgiMenopause it means alote.

Yes i went to a dentist she could find anything so i went to a specalist dentist who looks for tmj and he could find anything. i have kept fibromyalgia in mind becuase of my left shoulder blade that sticks out of my shulder it is very visible anybody can c it. I do have a really load clicking noise in my right jaw witch i can echo though my mouth and ppl can hear it. Its really hard to find where the cause is coming from because it happens at random times.

Thank you so much for responding, i will look into seeing a rheumatolgist.
Well, everyone has TMJ as that is your jaw joint, but I think you are saying he didn't find any dysfunction?  Perhaps you are early on in the problem, because if your right jaw is clicking so loud people can hear it, there is an issue there.  

Did the specialty dentist take TMJ open and closed mouth x-rays?  If not, they were not thorough enough.  

Do you ever wake up feeling your teeth clenched?  While a good dentist can generally detect the grinding patient by the way the teeth are worn down, clenching teeth are different.  My dentist says my teeth have all the anatomy of textbook teeth.  But I am a clencher and last time I didn't wear the special kind of splint that was best for my TMJ situation (flat-planed & hard- I have arthritis in my jaws due to a congenitally too small lower jaw).  I also, after years of suffering with TMJ dysfunction, got an MRI this past year, since I had arthritis and figured my discs were likely in bad shape  (had one dr. say he thought there was a small hole in one of them) which demonstrated one jaw disc displaced part of the time, and the other disc displace all the time, whether opened or more closed, due to a torn disc.

I have two siblings diagnosed with fibromyalgia and at least one of them has had  burning sensations which can accompany the disorder.

Your nausea that comes and gos- that can be associated with anxiety but is also might be a sign you are suffering from acid reflux, so I'd ask an ENT or GI specialist to check your for that.
Im sorry to hear about your tmj and your children that must be really hard on you.

yes i do have reflux and im pretty shore that's where the nausea comes from but i take nexium for that. Now that i think about i have had alote of injury's when i was little so it may be fibromyalgia. The dentist took x-rays with my jaw open and closed, i have done that twice now but he couldn't find anything. I told my doctor and he said that you cant c tmj with a xray.
I know there is something wrong with my jaw because when i yawn my left side where my tmj is, it crackles it sounds like rice bubbles.
Im just wondering how does a Doctor diagnose fibromyalgia?

Thank you for the comments this means alote to me.
Actually, I have no children, it's two of my siblings that have the fibromyalgia.  What other steps are you taking for your acid reflux besides taking Nexium?  RE: x-ray- well, with me, they could see arthritis and told me I had a classice type II overbite, and that type of bite is notorious for developing TMJ problems.  But you cannot see the discs on x-ray.  I suggest you see a maxillofacial specialist or a dentist specializing in TMJ who can suggest a kind of splint for you to wear at night if you are a clencher or grinder- it just might be helpful.  However, your medical insurance does not cover this expense.  This is the time to try to keep your TMJ situation from disintegrating.  This is the time to avoid gum chewing, hard nuts, like almonds, raw carrots, chewy candy and anything difficult to chew- and it's a long term life style change, not just temporary.  I wish someone had warned me about that when they first suspected I had a problem.

The rheumatologist will want to know about your history of injuries and your burning sensations, but ultimately, you need to have a minimum of a certain number of positive trigger points to be diagnosed by him/her.
Oh, and also, when you yawn, put a couple of fingers under your chin to keep from opening too wide.
Thanks SurgiMenopause for your great answers and supporting Sixeye. Your advice is right on, if it's extending beyond into the rest of your body sixeye, it's not TN. That is restricted to your head. Here is a diagram of the nerves involved.
No matter what it is or isn't, know your pain is real. Maybe use the pain tracker or the journals on this site to keep track of your symptoms, that will help as you describe them to doctors. We tend to forget the details as we become used to them. Or medications make us forget. Or both. Try and be calm, as stress will add to the pain. I used to think Yah whatever... but it's true. Yoga, breathing exercises, or even just lying down and counting with your eyes closed will help.
I hope you get some comfort and some answers soon.
Take care.
Thank you for your support and kindness it really does mean alot.

Well i went to the doctor and ask him if it was fibronaralgia and he said that its not fms because he has only diagnose it twice in his 16year career. Really he was only saying that because after 12month of pain he still thinks its in my head. so i ignored him and went to another doctor and i told him to send me to a Rheumatologist.
I went to the Rheumatologist who move my legs and arms around and took blood test. I asked him about fms and he said if the blood test comes back normal he will diagnose fms. Im still wondering y he didn't test my trigger points, he has to know about trigger points and i know i have one because when i lay down to watch tv and have something hitting the back of my neck it causes the burning to get worse.

I believe the worse thing about this is nobody believes you and makes jokes about it. even my family doesn't believe me and thinks ive lost my mind.
Someday i can have only little symptoms and other days i have no idea where i am with burning and ibs its crazy.

So hopefully in 8 days the Rheumatologist will diagnose me will fms because i know i have this condition but nobody will listen to me. im so glad that i got passed the anxiety and severe depression with suicidal thoughts, it was a crazy the first 2 months when all this happened but i now i just live with it and deal with the symptoms when they arrive. I think that the doctors really need to look into this condition because if a person is misdiagnose with anxiety and they have server pain all the time, the doctors are putting life's at risk.

The last few months i have written down the symptoms i have when they pop up.

- Burning though arms, chest, back, sometimes though hole body.
- Brainfog, vision problems, hearing problems feels like im under water.
- Muscle stiffness in back of neck and face(feels like pressure).
- Sharp stabbing needle pain shoots though my jaw.
- nausea
- ibs sick in stomach with diarrhea
- feeling week like having the flu.
- fatigue
- muscle twitching and jolting(mostly when relaxing)
- a fluid sound i can hear in my ears coming from the back of my neck(sometimes wakes me up).
- crackling rice bubbles sounds in back when i move my arms.
- storms make the brainfog debilitating
- worse when sunset and sunrise.
- sensory problems feeling strange.
Im trying different doctors and i really hope i meet a doctor who knows about fms or has a brain:).

thank you for you support it really means alote, the only ppl who dont think im crazy is here on my website.
Here on this website. :)
  I too am surprised a rheumatologist did not bother to check for trigger points- are you sure he didn't push anywhere?  Glad he did blood testing.  

Symptoms you describe that one sibling w/fibromyalgia has also described are burning, fibro-fog (brain fog), a stiff feeling in certain muscles & tiredness (comes from not sleeping well).  

Recommend one dr. that you try is a maxillofacial specialist who can check out your jaw situation and one who does TMJ mouth splints, should that be needed. Your nausea and diarrhea should prompt you to see a GI specialist, who can check for evidence of GERD (which can cause nausea) and to help w/IBS.  

Know too that anxiety can cause nausea and diarrhea, so if you are having these problems with the stress of what you are going through, prayer and spiritual support if you are a Christian are essential.  I recommend seeking professional assistance for temporary medicinal intervention  w/a psychiatrist if you feel stress is contributing to certain symptoms until you can adjust more to your condition (hopefully you'll get a proper diagnosis or more than one soon) , and have a working natural stress management regime established.  

Pain can cause a lot of problems- mind and body.  Doing things to stimulate your endorphines (natural pain fighting chemicals) is important.  Laughter and excercising, for examples, are  activities desirable to engage in regularly.
Thank you for your support it means alote to me.
I think i have pretty much tried everything, the Rheumatologistsaid that its not fm even tho i really think it is. I was walking in the rain and i had a sharp pain in the back of my neck(felt like somebody stabbed me with a knife) i could feel it starting to go though my but i just stopped and jogged home, plus i had all the vision problems and hearing problems.

i went to a new doctor and told her about it and as per usual she looked at me like i was insane. i have these symptoms everyday and i know it would make anybody lose there mind i do hing slow because of the disorientation and dizziness, i told my family its fm so they would get of my back. i know the nausea is because of my small hentia hernia that i have.

The crazy symptom that i get witch happens about 4 times a week, everything goas all weird the lights get bright and my sensors are all weird its kinda like smoking a joint but without being stoned, doctors call it anxiety i call it sensitivity. when it started i had panic attacks because its just so strange but now i just walk around and just ignore it because i know if i don't it will cause depression.

I try to go out with friend but being in a car is like a roller coaster icant get off. i do go for walks everyday and keep myself busy. i will try the maxillofacial specialist thank you for suggesting that. I haven't tryed a allergy test but i don't think its a allergy as there is no rashes just dermatitis.

im pretty shore it has something to do with the nerves and some kinda of naralgia disorder.

thank you for your support it means alote.
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