I am wondering if any of you suffer from cluster headaches as well as your TN2/TN?
I am sorry if you do because I have them myself and they are so awful. I had one this morning which made me curious if there was a connection at all.
I hope today is pain free......
peace
I was diagnosed with Migraines but I don't think that is truly the case. I think it is a combination between Cluster headaches and Tension headaches. Over the last 26+ years, I have been diagnosed with bilateral ATN, bilateral TN, bilateral ON, & GPN. I'm just plain screwed up in the head. I guess most of us are. lol
Haha! I like your sense of humor! Well, at least you have all the Neuralgias covered!!! 26 yrs and counting seems so terribly long to deal with this! I am 40 and unless I have a really long remission I am looking at many yrs of TN2 also.
My cluster headaches were originally dx'ed as allergies! Allergies! By a neuro!! Can you believe it!?! Probably you can. Thank goodness I only get them every few yrs. I also have ON and that is soooo soooo mean to me on a regular basis. I was in a very bad head on collision which most likely started these painful conditions or set them off at least. I have head injury so I thought the face pain, headaches etc were part of the severity of the accident. Well, whats done is done, all I can do is treat the symptoms. Yep, screwed up in the head! :-)
Mindy Utz said:
I was diagnosed with Migraines but I don't think that is truly the case. I think it is a combination between Cluster headaches and Tension headaches. Over the last 26+ years, I have been diagnosed with bilateral ATN, bilateral TN, bilateral ON, & GPN. I'm just plain screwed up in the head. I guess most of us are. lol
Moxie and others-This subject happens to be what I have been studying up on to help fix my self or at least reduce some pain. I have ATN on left side (had MVD on that side 7mnths ago), have TN on right side. I have bilateral ON and scalp neuropathy from having it so long 20+yrs. After having an Occipital Nerve Block I was able to determine that what remained was SUNCT or SUNA type headaches. What I experience is short lasting roaming neuralgia type headaches.
I learned from meeting a few good neurologists at the TNA group meeting that there is a relation to the Trigeminal nerve for headaches. For example the TN is responsible for Migraines. I used to get them 3-4x pr week and have not had many since my MVD. But I still have these crazy headaches attached to my nervous system. With my eye lids and face swelling up. My surgeon called it Autonomic. Which leads me to my next fact TN is also responsible for;. " The trigeminal autonomic cephalgias (TACs) are a group of primary headache disorders characterised by unilateral trigeminal distribution pain that occurs in association with prominent ipsilateral cranial autonomic features.1 The group comprises cluster headache, paroxysmal hemicrania, hemicrania continua, and short lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT syndrome)." only difference is I have it bilateral.
http://jnnp.bmj.com/content/72/suppl_2/ii19.full you can read more here to learn more. or Google TAC headaches
I am so sorry others suffer from this, but know that there is support, relief and help from your friends with like illness's.
Please let me know if you would like to know more, I am off to my pain specialist today to get my Botox and ONB procedure to reduce my pain and discomfort. I lean on procedures because my body is so sensitive to medications.
Healing Together, Tree
P.S For 20 yrs., I have also been misdiagnosed with only allergies as an explanation to my face pain and headaches. With many earaches and sinus issues. Turns out I have both and must treat both for relief.
Tree-
Thank you so much for the great information! It is great to see you so pro-active! I do like the information very much that you provided. If it is not too much trouble, yes I would like more information.
That is a fine line for me in terms of reading a lot of information regarding my symptoms and diagnoses. I like to know what is wrong so I can help (treat) my symptoms, however, medical terms tend to really tire me out as concentration is low from TBI.
I am sorry you also have to deal with so much pain.
Are you studying this information for personal information or are you attending a University?
Thank you so much again for the information!
Have a very pain free day......
Tree69 said:
Moxie and others-This subject happens to be what I have been studying up on to help fix my self or at least reduce some pain. I have ATN on left side (had MVD on that side 7mnths ago), have TN on right side. I have bilateral ON and scalp neuropathy from having it so long 20+yrs. After having an Occipital Nerve Block I was able to determine that what remained was SUNCT or SUNA type headaches. What I experience is short lasting roaming neuralgia type headaches.
I learned from meeting a few good neurologists at the TNA group meeting that there is a relation to the Trigeminal nerve for headaches. For example the TN is responsible for Migraines. I used to get them 3-4x pr week and have not had many since my MVD. But I still have these crazy headaches attached to my nervous system. With my eye lids and face swelling up. My surgeon called it Autonomic. Which leads me to my next fact TN is also responsible for;. " The trigeminal autonomic cephalgias (TACs) are a group of primary headache disorders characterised by unilateral trigeminal distribution pain that occurs in association with prominent ipsilateral cranial autonomic features.1 The group comprises cluster headache, paroxysmal hemicrania, hemicrania continua, and short lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT syndrome)." only difference is I have it bilateral.
http://jnnp.bmj.com/content/72/suppl_2/ii19.full you can read more here to learn more. or Google TAC headaches
I am so sorry others suffer from this, but know that there is support, relief and help from your friends with like illness's.
Please let me know if you would like to know more, I am off to my pain specialist today to get my Botox and ONB procedure to reduce my pain and discomfort. I lean on procedures because my body is so sensitive to medications.
Healing Together, Tree
P.S For 20 yrs., I have also been misdiagnosed with only allergies as an explanation to my face pain and headaches. With many earaches and sinus issues. Turns out I have both and must treat both for relief.
Moxie-No, no degree, no university course, just tenacity. Just really sick and tired of exceeding the knowledge of all of my doctors, and living in chronic pain. I am fortunate to have some really really smart doctors but the complexity of my illness leaves the best scratching thier heads. My neurosurgeon and I agreed that this would be handled by process of elimination. So far that’s been the best way to go about it.
At first the medical terms are difficult to understand but as you keep educating yourself the words will come to you naturally and make more sense. When I don’t understand the medical terms I just simply Google those terms and learn what they are so I can continue on the article.
You’ll be surprised how much you can pick up if you do just a little bit every day.
I am also fortunate to live in an area where we happen to have a TNA group meeting bimonthly. Our meetings are held at Stanford University. Stanford has been running these meetings now for a few months and they bring in different specialized neurologists to meetings for us to be educated and get some questions answered. Dr. Cowen was our speaker a few months back. He is a neuro headache specialist at Stanford. I learned a bunch from him then was able to discuss it with my doc’s. I was then able to make an educated decision to move forward with a treatment plan. If one plan doesn’t work then we come up with another based on the results or evidence. Two things I learn from him gave me clues; V1 issues most always mean that there is another problem. And the Tri Nerve is responsible for migraine headaches.
I will post some info soon that may be usful, Tree