Description of Atypical vs Trigeminal neuralgia?
So sorry you have been through the mill on all of this....
i have atypical tn probably since i was at least five yrs old. drs treated me for migraines for years and medication never helped. i would be out in sunlight and squinting like at school field trips or school picnics and i would get this pain and slamming"headache" then it would make me sick to my stomach and often vomiting involved, and this horrible pounding in my head thinking it would explode. well over time they became more frequent and duration increased. then ten yrs ago at 44yrs old everything went crazy had this weird sensation in head on left side like something electrical was burning out or fizzling. drs think i went chronic with no relief at this point, they dont know for sure.
mri's mra's showed nothing!!!!!!!. so two yrs of trial and error on meds nothing worked.
had motor cortex implant in sept of 2006 at chicagos, northwest memorial hospital and it helps a lot. no cure tho. but at least i have tools to manage the pain.
i am on 2/3 less meds and huge flare ups are few and far between and no more vomiting from pain since pain is more controlled. with this being said does any of the migraine medication help?
my first line of attack would be reading up on TN and since reading causes you pain maybe you could have someone help you with this or look for it in an audio form. the book Striking Back about tn, atn and other facial pain would be good a resource to see if you have triggers that you notice set your pain off. like coughing talking, cold air, drafts from ceiling fans, air vents, chewing, laughing etc. even tho i have help from meds and mcs i still have to avoid the triggers. get plenty of rest etc.
my main trigger is the nerves around my left eye. so sun glasses are a must ALL the time i go out, even on grey days when it is that odd brightness, sometimes i wear them in the house too!
so process of elimination kind of thing.
a friend of mine who has tried everything for her migraines. just started taking Curamax. available on line and some health food stores. she use to go to hospital for injections and said this has helped her immensely. i will try it too since it is suppose to help inflammation.
blessings for pain free days for you!
Hiya,
I have TN, AFP and have just been diagnosed with Trigeminal Atonomic Cephalalgia which I gather is cluster headaches. I mainly get it on the left side and oh my it hurts hurts hurts. I am currently on Pregabalim (but coming off that in the next two weeks) as they want to try me on Lamotrigine (sp?) and for the headaches I have recently started Indometacin to help with the headaches. I have to say the headache pills are amazing and have pretty much stopped the headaches almost completely. However coming off the pregabalin has started the extreme hurt in my face and because it’s cold it’s making it worse. But only a few weeks to go to see if the new meds will work. I hope that it does.
Don’t know if you have tried the med that I’m on for the headaches but might be worth a try???
Trish-I suffer from TAC headaches called chronic paroxysmal hemicranias or CPH with migraines, along with my ATN, and ON all bilateral. Its like a merry-go-round one can set off the other so its hard to tell them apart. The way I did it was self education. I had to self diagnose, so you are ahead of the game if the docs did the dx. I found some useful information online to help me figure out which TAC I had with migraine features. We also have a Trigeminal Vascular system. The headaches have to do with the Vascular system also. I will give you some links to educate yourself with.
I take medications Verapamil and Botox to control the migraines. I also take supplements and do CAM treatments all day. If under control high dose's of Ibuprofen will work for break thru pain storms. But Indomethacin is the drug that controls some TAC headaches absolutely, but it is harsh on the body. It spikes my BP super high and mess's with GI. So I take it when needed. I have a considerable amount of face pain that comes from my headaches. I use topical Ketamine 10% gel for my face pain plus supplements, and natural remedies for nerve pain. There's more if your interested that I do for my 3 illness.
http://facepainhelp.com/profiles/blogs/categorizing-facial-pain-pt-2-cluster-headaches-facial-migraine this is one of many informational videos you might want to watch the one before or after to get more understanding.
I have all the same triggers and symptoms as people are listing here and a few more. The autonomic symptoms are so depilating, Hang in there your not alone.-Tree
Good luck! Marcie I hope you are able to get off pregabalin, stay warm! :)) -Tree
p.s I tried Lamotrigine and it did not help my headaches or face pain for that matter. But every one is different.
Marcie said:
Hiya,
I have TN, AFP and have just been diagnosed with Trigeminal Atonomic Cephalalgia which I gather is cluster headaches. I mainly get it on the left side and oh my it hurts hurts hurts. I am currently on Pregabalim (but coming off that in the next two weeks) as they want to try me on Lamotrigine (sp?) and for the headaches I have recently started Indometacin to help with the headaches. I have to say the headache pills are amazing and have pretty much stopped the headaches almost completely. However coming off the pregabalin has started the extreme hurt in my face and because it's cold it's making it worse. But only a few weeks to go to see if the new meds will work. I hope that it does.
Don't know if you have tried the med that I'm on for the headaches but might be worth a try???
I am scheduled to undergo MVD surgery next week. For me here in Canada this is covered by our medicare system - but I wondered you people in the States who have had it - how expensive is it? I sure hope it is successful as it sounds scarry and pretty invasive. How did you who had it find it?
Thank-you all for the great information. Like all of you, I had to research my illness to find doctors to diagnose me. I was very lucky to find a wonderful connective tissue geneticist who diagnosed me with Ehlers Danlos Hypermobility. When normal physical therapy for EDS did not work, my geneticist agreed that I needed to see Dr. Henderson in Maryland for a cervical cranial instability/atlanto axial instability evaluation. My other Houston doctors thought I was crazy, but “they do not know what they do not know” if that makes sense. I ultimately had C1/C2 fusion, and my occipital neuralgia is cured. Dr. Henderson determined my skull had moved forward off of my spine, but “accepted” imaging techniques techniques do not usually pick up the type of instability.
So now I feel like I am starting over with the trigeminal pain, and I am so tired. EDS is a constant challenge. Most days I feel like having the flu without the respiratory symptoms. Then some joints tend to partially dislocate. But I am determined to keep going.
Thank-you for the links and med information. I have started reading/watching what everyone sent and am very grateful.
I am also thankful to have found Dr. Singman. The hard part is that i live 1300 miles away from Baltimore. So we communicate by email. Friday he suggested low dose naltrexone for the chronic headache starting at 2mg and titrating up to 4 mg. This drug regime was presented at an EDS seminar and is used for MS patients at a low dose, but I know about the side effects too.
I still cannot tell whether I have ATN or not. Dr. Singman is considering that now. Dr. Singman believes EDS is causing my problem somehow. So “normal” treatments do not always work. Oh what I would give to be normal!
Many thanks!
Trish