?? 1|1|yes it is horrific|cinda68|lacinda68@gmail.com|02:39:27|11/03/2012|
I bounced from doctor to doctor for two years before getting a diagnosis. I thought it was a strange sort of migraine (have had those for years), constant sinus infection, even wondered if I had some sort of brain tumor for a while. When it flares up, I can't brush my teeth or touch the left side of my face, even a kiss hurts my face.
Doc has tried neurontin but after one dose my legs swelled up so bad I couldn't wear pants or shoes for a week. Really scary with my CHF, then another doc tried to give me lyrica which is nearly the same as neurontin and my drugstore caught it and told the doc I was allergic. I've given up on getting anything to help, at the moment, scared to try another seizure med because of the neurontin allergy. Not sure what to do now, won't ever consider surgery...that much I do know.
2|1|I was diagnosed with it last week...|carmenanderson|cloudcars@verizon.net|20:34:08|11/04/2012|
I guess I should be thankful that it only took 2 weeks to diagnose. I was wondering if you had any special tips or helpful ideas....
please feel free to email me... Thanks
4|2|I don't have any advice really...|cinda68|lacinda68@gmail.com|18:08:27|11/05/2012|
I haven't been able to get adequate help or an answer about TN yet. Hopefully my next appt will help, maybe more tests, I don't know. I just crawl into bed and try not to talk or move too much until the pain goes away.
My doctor said he has seen grown men crying over this, they call it the suicide disease...worst pain known to mankind.
My prayers are with you, I know how bad it is and I pray you can find help soon too. 3|1|My Mom had it and found relief!|Gammiesue|snschapin@yahoo.com|22:56:32|11/04/2012|
My Mom suffered for years with Trigeminal Neuralgia to the point where she had reached the end of her rope. She tried the meds but couldn't function on them. I don't remember how she found out about this but she had the Cyberknife procedure done and has been pain free after two treatments. It's been about ten years since she had this done and it's a miracle!
I hope both of you can find something to give you some relief.
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5|2|thank you, never heard of that|cinda68|lacinda68@gmail.com|18:10:15|11/05/2012|
I don't want any sort of surgery for this, or anything else for that matter. I'm so glad your Mom got help, it is dreadful for sure. 6|1|I was put on Carbamazepine 200 mg|carmenanderson|cloudcars@verizon.net|23:54:54|11/05/2012|
every 12 hrs.. it's helped with alot of the pain. It was really bad the first 2 weeks not knowing what it was. Then
after being diagnosed @ 2 weeks of pain--i was given the prescrip.
The meds must have had to build up in my system, as even the first couple of days on it, I've have episodes where
I just held my head and cried for hours... it seems to be getting better now . Not so intense of pain or as long.
One night just after getting diagnosed, it was 11p - 4 am and it felt like lightning in my head the whole time... seems to be getting better though.
7|2|I'm so glad it is working for you|cinda68|lacinda68@gmail.com|13:39:14|11/06/2012|
I was thinking of asking my doc if I could try it too, just kinda scared because it is another anti-seizure med and not sure if I would be allergic to it like the neurontin. Plus, who knows if I can even take it with the meds I'm already on, lots of questions to ask my doc.
Bless your heart, I know how bad it is, glad you are feeling better. :)