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Greetings, I am at that point I think I am going nucking futs. I have always had a history of depression (life long depression was the classification at one point) and recently was diagnosised with TN. The usual course of action I was/am told is gabapentin (Neurontin). I am going crazy... Sleeplessness, thoughts of suicide and of times in my life, I deep down know I am sitting on top of the world.
Having read all of these horror stories I feel a little better knowing it ain't just me. I am here today because I laid in bed last night and was making mental notes on how "to do it". You know what I mean. Scared, you darned right.... I may just stop tonight... the little pain in the side of my face doesn't compare to not feeling at all.
Whew, feels good to get this out there, I cannot really talk to my SO on this, she'd have a bird. Love me yes, but I don't feel like I can talk to her about it. OK, enough for today, off to seek help.[/b]
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Hi David,
I was diagnosed with Trigeminal Neuralgia almost 12 years ago. I am taking Neurontin for the pain in my face. I had Gamma Knife Radiation brain surgery on the Trigeminal nerve on Feb 10 2006 to eliminate the facial pain. I haven't been able to return to work since. The facial pain is constant (it was before the surgery too so I haven't really gained anything and I am so close to losing it all). By doctor's orders, I am titrating up to a daily dosage of 2400 mg of Neurontin because it seems to help with the pain. I found your message when I was checking out a drug the neurosurgeon suggested. That drug is Lyrica. That drug is not approved for TN either.
I am very concerned npw because Trigeminal Neuralgia is already called the Suicide Disease because TN doesn't usually get better, it usually gets worse as time goes on. There is a great group of support people at www.tna.org who are committed to ending the pain of TN. I highly recommend them to you.
I am experiencing feeling of worthlessness, low self-esteem, and of wanting to end my life. I have a huge extended family, a husband and one daughter [age 10]. My poor husband is at the end of his rope with this. He says I've changed since the surgery and taking this medication is affecting all of us. Everyone is walking on eggshells around me. Everyone is afraid to touch me or talk to me because I am being so sensitive and I am in pain. I am going to hang on. Knowing is power. I am going to get through this. I just don't know how yet.
Thank you for sending an email. We may be just two ships that pass in the night but you've been a beacon for me. Thank you.
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I too have Trigeminal Neuralgia. My doctor says it is caused by stress. My face hasnt shot off for about a
year now, but it is the most scarries thing that has ever happened to me. I took Neurontin for about six
weeks until I got the nerve to settle down. I didnt like the way it made me feel either. I had an MRI on
my head last summer but everything showed up okay. I was convinced I had a Brain Tumor. I also
went into TNA's website and found it very informative. I also get a newsletter from them. Until you
experience this pain, I dont think anyone can really understand the way we all feel. Good luck
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It's 5:30am and I am still up, rolling on the bed, couch and floor. From the heating pad to ice. Medication is not working. I can not even think straight right now but I think they finally diagnosed me having TN 4 years ago. Before that time, I suffered for 5 years going to every dentist and doctor within a 5 hour radius. So 9 years altogether. I've been told everything from arthritis to TMJ was my problem and had many tell me there was nothing wrong. Nothing wrong?? I was begging my husband to shoot me during one particular episode that lasted 2 weeks with hardly any relief. Finally, a local ER doctor listened to me and told me that he was positive I had TN and he immediately shipped me to the city to a brain & spine center. (I live in the rural country) When I arrived there, I went through MRI's with and without contrast, which is where I also found out I had a brain tumor in my penial gland. All the neurologists and neurosurgeons I have seen tells me that the tumor has nothing to do with the TN, it's a whole seperate problem. The penial gland is in the middle of the brain and the looping I have is in the front (from what I can understand) My TN gives me a few jolts of lighting daily so I never forget I have it, but when it flares up like right now, it's a constant shocking and aching.
The pain is maddening and right now my crying is not helping either. My kids will be up soon and I am a mess. This affliction or plague has nearly ruined my life and I'm so tired of it.
My great grandfather and two of my uncles has this also. They've had different procedures, alcohol and glyceron injections, gamma knife, microvascular drepession and then my grandfather had his nerves cut. None of them every got relief, which is why I haven't tried any procedures like that. I'm afraid it's all genetic and it won't help me either.
No one understands this, my husband, parents...they see it happening but they really have no clue. When my mother in law and others referrs to it as a migraine I almost get hostile.
I'm at my wits end I just need a miracle or something at this point. Neurontin has turned me into a shell of who I used to be. I can barely function and it's like I'm a zombie, or I'm living in a box where I see what is happening around me, but it's in slow motion and it takes me forever to react.
Sorry to ramble. It's helpful to read the posts above me. Makes me at least know I am not alone.
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dear lawyers,
I have had a horible and seemingly non ending battle with, TN, Depression, anxiety attacts, and physical and mentaal anguish from the medication I was put on when my ex husband took my child at bith and left me homeless. I have a home , however the meds that the "mental health team put me do not work , if anything I have become more depressed, very panicky and very agaraphobic. Also thje seroqule is putting me over the edge and I have asked to be taken off it many times . The phychiatrist always put this off, they say well you have been on this prescription for some time why do you want to go off. Becaue I believe my body and brain are being damaged and my day to day memory is fading quicly. sometimes I don't remember what day it is or what to do. My ex was abusive to me and I am struggling to stay alive. It does't seem fair that I have had to suffer for so long with the effects of this meication. I am getting very very weak and feel suicidal, 14 years
of this medication and I think I am going over the deep end . The only thing that keeps me going is that I have a son and I am staying alive because of him.
A friend told me about a class action law suit that is in process for people who have been on nuerotin and it's side effects. Help is all I can say
VM
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