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Posted By : Shadow334 - 7/10/2017 10:56 PM
I am going to try and keep this short. about three years ago I was diagnosed with IC (Interstellar Cystitis) And have been taking meds and doing instillations to help with the pain when it flairs up. about a year later I had dental work done and my jaw started to hurt I went back to see why and was given a night guard and mussel relaxers and the pain went away for about 8 months. In July of 2016 I experienced a temple head ache that would not go away shortly after visiting my eye doctor, nothing was wrong with my eyes. I spent a month struggling with this I figured this was happing because I have a very stressful job. One night I decided to wear my night guard and the pain went away instantly. about a month later in August pain came back on the left side of my head however it seemed to always follow a time pattern of later in the afternoon I am fine in the morning and evening. The only consistent thing about this is I will always feel the mussels around my left eye throb first then later the pain begins. The pain has spread all over to the left side of my face to both sides of my face or in the jaw it also will affect my sinuses and will feel extreme nasal pressure and face pressure At this point I started going to all sorts of doctors but nobody seems to know what is wrong with me. I went to a dentist who specializes in TMJ he put me on mussel relaxers and nortriptyline and I also had botox injections but none of this seemed to work. The ENT just gave me nasal spray and an allergy shot and pills for stiniuts nothing. I have been working with a neurologist who had put me on @Neurontin (which did work for a little bit) and tegratol. I thought it may have been trigeminal neuralgia but after doing a CT/MRI nothing. I also went through thinking this may be TMJ but after botox and night guards nothing, also no pain in the am my jaw has never locked and I can open wide no problem. The doctors keep going back and forth on what this is and it is driving me nuts if anyone has any insight to what this may be I would really appreciate the help because I am pulling my hair out trying to figure out what this may be.

Posted By : straydog - 7/11/2017 9:45 AM
Hi Shadow & welcome to the forum. It stinks when you can't get drs all on the same page. I know you saw a TMJ specialist, but I am going to suggest that you check out this website for TMJ specialist. It is tmj.or & We have a couple of members that used this site & found it very helpful. The problem with TMJ is a lot drs say they specialist when they are not. Check this site out & see if yours is listed. If not, perhaps consider seeing if one is on your area & consider getting a consult. One of our members is having great success with a physical therapist that specializes in TMJ. My thoughts are this could very well be the culprit.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 7/11/2017 1:19 PM
Trigeminal nerve pain is one of the more complex pain syndromes . . And one of the more excruciating manifestations of pain.

The Trigeminal nerve is one of the 12 cranial nerves. It is not a peripheral nerve and, as such, treatments can be more difficult to find and distinguish.

Botox (administered as a Botox injection into the Trigeminal nerve) acts as a nerve impulse inhibitor and provides a level of relief for some people.

I highly recommend the temporimandibular link that Susie has provided in her response. The TMD Association reached out to me after I made an initial inquiry with them, providing literature and referral resource information. The association publishes a monthly e-mail that is highly informative. Tries group stays in top of new research and treatment and filters out unreliable and unreputable sources of news.


I hope tomorrow is a tad better than today.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

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