totally bummed

well on thursday I was diagnosed with Trigeminal Neuralgia. the dr exact words to me were  " the good news is its usually not terminal but you  can expect to have a lt of pain as there is no cure for the disease. all they can do is try to reduce the number of attacks with seizure medications and since they can do nothing for the pain they can at least give me meds strong enough to knock me out during the worse of the attacks."  Oh by the way this is called the suicide disease because the pain can get so severe that people have been known to commmit suicide to stop the pain. so to say the least I havent left the house since thursday, no exercise, and am emotional eating  I am not eating sweets or fats as I cant tolerate them but have been eating meats, veggies, fruits and even breads. I am hoping on monday when I go to see my family dr he might have some different information that might offer a brighter future. I am trying really hard tonight to stay away from the food I dont need it and I dont want to destroy what I have accomplished. but it is hard because what good is what I have done if I cant leave my home anymore.

i am so sorry you are going threw this i went threw that before i had my rny but what idid one day was just got out and kicked the worlds butt  and ask god to give me  the streanght and the power to beat it and with time i was there but were all strong what look how far we all have came right

I am soooo sorry you are going through this.... I hope it is not as severe for you... What caused this disease and why cant you leave the house? Well, I hope you are doing ok...

  they dont know what causes it he says I have probably had it for years ( which I havesuffered from seizures in the past but they are mild an usually only occur while I sleep)  I had dental surgery last week and thurs i had horrible pain in my right side of me face and a migraine that felt like someone trying to open my head with an electric cord none of my meds would help the pain. they took me to er where they did a bunch of test and came back with this diag. then proceeded to give me 4 rounds of morphine and got my bp down to 78/45 so they had a nuero come in and said there was nothing else they could do so they gave me a shot of seizure med and sent me home. the meds will make me sleep but when I wake up the pain is still there. it is better today inly had 3  attacks today. I dont leave the house because thereis no warning on the attacks and when they hit they are so severe I cant think or anything I  am afraid one might hit while im driving. I have done a lot of reading today havent really learned much so i guess i just wait until tomorrow to talk to dr. I will say Sherri's link page was much kinder in the descriptin of the disease. at least it didnt call it the suicide disease.  thank you Sherri Kathy

Kat, WhenI was told I had Lichen Sclerosus, the first thing I did was Google it. My GNY was very honest with me when she diagnosed me by letting me know that Lichen Sclerosus is very rare and that she knows very little about it.I just Googled yours as well.  The very first site I went to (http://www.mayoclinic.com/health/trigeminal-neuralgia/DS0044 6) did give hope that all is not doomed for the future. Please read it, and do your own research on it. Don't assume that your doc knows all there is to know about it..ok? There are new findings every day and we are fortunate enough to be living in a time when those findings are usually placed on the internet...right at our fingertips. Don't be afraid to print off articles and bring them to your nurologist and ask him if you would be a good candidate for that new technique, meds, surgery, etc. I have found with all of my many, many complications that the more educated and involved I am in my health, the more healthier I will be in the long run. Now...I will share with you a conversation that took place between a nun at Seton Hospital and myself.  It was shortly after I had arrived there and at that time, only 'awake' from my coma for less than a week. I was still trying to wrap my mind around the fact that I had almost died. In fact, I was throwing my own personal pity party...and I didn't invite anyone to join me to help me get through it. I was keeping all of these emotions bottle up when others were present...and crying myself to sleep when they weren't. Here I couldn't walk, I had trouble talking & putting coherient thoughts together which was totally frustrating for my analytical mind, I couldn't go to the bathroom on my own, I couldn't feed myself without wearing more than what went in my mouth, I couldn't shower or comb my own hair, I didn't even have the strength to pick up the room's phone, and embarassingly, I couldn't even wash myself. I kept thinking about all the things I could not do. Then Sister Anne came to see me. I'm not catholic, but do have a great respect for all clergy of any religeon. Through the course of our conversation, she knew exactly how to get me to talk about what was bothering me. I blurted it all out and tears flowed. And then I started apologizing for having a pity party. She stopped me right then and there. She said (and I will never forget this!!) 'Sherri, you have been through alot and you DESERVE this pity party! But remember, every party has a beginning and an end. The hostess of the party decides how long they want their party to be for. You decide how long this one should be for, and then stick to those times.' I so much needed SOMEONE to give me permission to feel sorry for myself! After that day, my pity party was over and I have only been looking forward. I can do most things now as well as I did before the coma. Well..still some problems with stairs and tiring out quick, but I'm confident those will improve too. YOU have the right to your own pity party. Set a start and end time (date) though. After that, brush yourself off and look to the future. Don't think about what you can't do..or MIGHT not be able to do, but think about what you CAN do to help the situation. And the first thing you can do is educate yourself on your diagnoses. Next, keep living! Get out of the house, see friends, live your life as you were told simply that you may not want to wear makeup anymore. Do NOT give up on life! And remember, the healthier you are, the easier it is to combat anything that comes your way. So put down that bread...k? Get back to walking or any other exercise you were doing pre-diagnosis. In other words...LIVE! We're here for you Kat....many prayers... Sherri

Just wanted to send you (( HUGS )) and echo what Sherri said about doing your own research!!!!

Just wanted to send my hugggggggggs and prayers for you Kat....and also..like Sherri said...have that party...dust yourself off...and live life. yes, being healthy does make a difference when trying to combat bad things. Prayers are with you, Janene

Sherri, thank you my older daugter took the kids and kept them at her house for a few days and my husband was working a long shift today. SO I used today to deal with this I sat down and wrote out everything I was feeling how mad I am about this and how unfair it is. I am determined to not let this disease dictate how I live my life. I contacted a dr who works thru alternative medications i go see her thursday she said we can try herbal remedies, massage, therapy and if necessary we might even try acupuncture. I say the nuro dr today he basically said the same thing everyone else said no cure, nothing we can do. he gave me anti seizure meds and morphine to take at home when the attacks come on.  of course tonight I had to go to hospital because I couldnt breath and my lungs felt like they were on fire,  i was having an allergic reaction to the seizure meds  so they gave me meds to make me breath and also benedryl in my iv to help with the allergy. then of course ( as they are morphine happy at this hospital) they gave me 2 more doses of iv morphine. I didnt even know they were doing it until the iv site started burning like mad. I asked him what he gave me and he said morphine for the pain, I asked him why they did that I had had morphine just 3 hours earlier and they had given me phengran and bendryl. He said that is what he was told to do. so I feel like im in a daze.  They also gave me more meds to take at home to keep me from having another allergic reaction. on a good note though when I went to the dr he weighed me and I lost 2 more pounds. I think it might be more because my legs, feet and hands are swollen pretty bad right now I dont know why. but its just the extremities my face isnt swollen and my clothes are getting bigger by they day. so I am going to have a little extra coffee and see if I cant get rid of the water. Thank you again everyone for all your kindness and support Take care Luv, Kathy