Atypical Trigeminal Neuralgia with Cluster Headaches

[tryingtosmile]

I have had trigeminal neuralgia for almost 5 years. I have had MVD, Gamma Knife, Nerve Blocks and 4 days ago I had Balloon Compression. I have taken just about every medicine you can think of and am on ALOT of medicines. In addition I have migraines with cluster variance (this is what my neurologist diagnosed it as) whatever they are they are horrrible. I have high blood pressure, fibromyalgia, Crohn's disease, TMJ, Interstitial Cystitis, Reflux. I am currently taking Carbitrol 1200 mg/day and Topamax 300 mg/day for the neuralgia/migraines. I also take Cymbalta for the migraine headaches. I won't list all of the other medicines. I have indomethicine but my neurologist is concerned about the Crohn's so we are waiting on that. I also use oxygen but it helps sometimes and sometimes it doesn't. The headaches can surprise me so fast that it's useless at times. I have narcotic pain medicine (Vicodin) they don't like to give anything stronger, which is also useless. I often have to go to the E.R. It has only been 4 days as I write this but so far I am experiencing lancing pain STILL and hoping it's just quirks that will subside. I've always had trouble with my left eye . I have pain in the back of my head, scalp, forehead. My surgeon is "honestly not sure what to expect" The greatest amount of pain  is a deep seeded pain in the roof of my mouth and sinus area (next to my nose) The surgeon just recently questioned a diagnosis of sphenopalitine neuralgia. My eye often swells, waters and my nose gets really stuffy with the headaches. My mouth will droop on that side also. I miss an entire week of work and I never have any warning. The TN itself is bad enough.  I've read that the sphenopalitine ganglion can be removed in severe cases..have you heard of this?? I've had blocks and cryoablations..with no relief. Right after the balloon compression I've had severe pain in this region. I don't believe this recent procedure reached this area at all.

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to obtain a history and examine you I can not tell you what your diagnosis is. Below is a brief description of what sphenopalatine neuralgia is and its treatment; however please note that I am NOT implying that based on your description I feel you have this condition; I am not making or refuting any diagnosis nor recommend any treatment.

The sphenopalatine ganglion, also called Meckel's ganglion, is located in a part of the upper airway (nasopharynx) called the sphenomaxillary fossa, behind the posterior tip of middle ridge (turbinate) in the very back part of the nose. It is a cluster of nerve cells that is related to the trigeminal nerve, which has several functions but primarily provides sensation to the face. Smoking and alcohol can precipitate attacks or make them worse.

Sphenopalatine neuralgia, which is also called Sluder's neuralgia after the physician who described it, is a condition associated with facial pain, predominantly around and behind the eye, temple, upper jaw (maxilla), and upper gums. The pain may begin at the base of the nose then spread around the eye. It might be associated with eye tearing, runny nose and red eye. A distorted sense of taste may occur.

Sphenopalatine neuralgia differs from cluster headache in that cluster headaches are relatively sudden and brief, whereas the pain from sphenopalatine neuralgia can be longer, hours or days. Also, the quality of pain is different. In sphenopalatine neuralgia, the pain is usually burning and aching, whereas in cluster it is usually stabbing shooting pain. Also, the attacks of sphenopalatine neuralgia do not cluster the way cluster headache pains do.

Treatment can include a block of the ganglion through a intra-nasal approach (through the nose) or through the pterygopalatine fossa, and area located roughly behind the upper jaw bone. Resection of the ganglion can theoretically be done but this procedure is rarely done and considered extreme. These treatments are not without their complications, and should not be done just because a diagnosis is suspected but not sure, just to see if it works, because a procedure that is not indicated could certainly make things worse.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[tryingtosmile]

MVD stands for MicroVascularDecompression. It's a surgery for Triegminal Neuralga. Well probably other things too I guess. they go in through the cranium (skull) behind the ear and find the blood vessel (s) that are impinging on the nerve and separate them. Then they put a piece of Teflon between the two to keep them separated. It's a very intense surgery. Mine was with complications. I won't go into that. It gernerally works well with less chance of numbess. Good luck.

[occneuralgia12]

What is MVD?

Thanks.