Anyone w/ TN 1 develop Cluster Headaches?

I’ve had TN1 for 3 yrs and on April 25 was hit by a new pain on TN side.This pain is as if a red hot rod is stabbed into my eye and moved up an down without let up. Different from TN but just as painful, lasted 1 hr. Next day again same time of day 2 hours. I called GP Dr she prescribed OxyContin. Came again same time next day 3 hours oxy didn’t touch it. Called her again, prescribed Rizatripton. Next day same time hits again, drug didn’t touch the pain. 3 hours.Then it’s the weekend. 3 hours long each time. By now, I’ve researched on my own and identified Cluster HA. Called Nueroligist Mon. He prescribed Topamax. Worked after the first pill. Thank goodness ! Have any of you had Cluster headaches develop during TN? They are both rare disorders. I have a consultation appointment with Dr Ken Casey June 1 to discuss MVD. I’m hoping both problems can be solved with surgery. Would like to know if anyone else has both disorders. Thanks!

I have problems with pain in my eye as well. Not sure if your self-diagnosis is correct ... My neurosurgeon said it's all part of TN.

Hi Beach Lover,

This sounds similar to the flare ups that I get around my left eye. There are many, many different symptoms happening there at the same time. But the ice pick of pain lodged behind my eye is the worst. I also get blurry vision, nausea, dizziness, tingling on my temple, the feeling that something is stuck in my eye and my eye get teary and nose runny.

My neuro said that I have symptoms of both migraines and cluster headaches during those attacks. And, yes, nothing will touch it. Topomax seems to help some people with these symptoms.

Unfortunately, lots of us have symptoms of more than one rare cranial neuralgia or disorder. I have bilateral ATN in all three branches, with the migraine & cluster fun plus symptoms of GPN and ON.

Dr. Casey is amazing and hopefully he will be able to help you. I don`t understand how some of us have all of these cranial neuralgia problems but no compressions showing and no MS or anything. So little is known. There is a lot of research going into genetics right now and I think that is a probable connection. TN runs in my family and so do a few other neurological diseases and conditions.


This summer I have been diagnosed with cluster headaches, very similar symptoms ! Been given choice of options blood pressure tabs, self injection, pure oxygen or if very severe injection in back of head. In the uk any advice grafully received xx