So, I take 2400mg of neurontin a day and Percocet as needed. Saturday I was out of town and left my meds in the hotel. Needless to say I was vomiting by the time we made it back to the hotel from being in so much pain. So, I spent a whole day trying to “catch” my pain.
I know the neurontin helps because if I dose regularly it takes my pain to a tolerable level- but I wanted to see if the percocet helps. So… I haven’t taken any today and my face is really starting to bother me. I know it was mentioned that opiates may not provide any relief for TN pain. My goal is to make it without the pain meds and just stick to my neurontin until my dr appt tomorrow afternoon.
My last flare up lasted 17 days, this one is going on 33 days. Why do the attacks get worse and last longer?! My first attack only lasted 4 days, which was almost four years ago.
I’m starting to keep a pain journal, perhaps to pinpoint triggers or to see when my pain is most prevalent. I have another question about antidepressants- a decade ago I was put on Prozac for a traumatic experience. Approximately three months into treatment with the antidepressant I actually felt like I wanted to die. I was suicidal and kept thinking of ways to end my life. Well, I got pulled off the pills and soon those thoughts vanished and I felt normal again. I have never felt that way before taking the antidepressant. So, I’m curious if all antidepressants will make me feel this way, as I am scared to death of taking them. My doctor prescribed trazodone, but I’m scared of it.
My neurologist appt is July 31st, so for now my GP is treating me. I’m just trying to find what works for me. I don’t feel depressed now, but I can see it happening the longer this pain keeps on.
Hi be careful increasing/decreasing your neurotin too quickly as it is an anti-seizure med and doing so can actually trigger a seizure for you...check the side effects and be careful
I will talk to my GP about an antidepressant that may be right for me. I may also suggest klonopin, as I’ve read it can help.
I didn’t increase my dosage of neurontin on my own- my GP bumped me from 1800mg to 2400mg a month ago. I was experimenting with not taking the Percocet when it started to get bad. I have to admit today has been a little rough, so I’m thinking the combination of neurontin and Percocet does help me with my TN pain.
If I take both, my days are generally okay… I am just not wanting to be on a bunch of drugs, so that’s why I wanted to see what works for me and what doesn’t.
I can't believe you are still functioning after having TN for that long. My daughter has had it about a year and she has already had the,(I think the name of the surgery is WMD) it is the one where he cuts a hole in her scull behind her ear.Needless to say it did not work. Before the surgery she thought it was horible but after it was totally unbearable. She was in the hospital last week and when the Doctor called me I could hear her in the background crying out "Kill me , please somebody kill me." If you are a mother you know how hard that was for me to hear. Two days before that she went to see her surgeon and the only thing he had to say was "I did the surgery right" when my daughter told him "obviously not or the pain would not be ten times worse." he told her there was nothing more he could do unless she wanted to have the surgeryagain.This doctor was from the Spine and Brain Center in Las Vegas,Nv I would appreciate any and all advice.
My heart aches for your daughter! I went through three dentists, two oral surgeons, two mds and two trips to the ER.
My intial attacks were bad, but spaced out- I feel a constant burning but what kills me are the stabs and jolts. It’s been a long process and my attacks are getting worse and worse.
I am the mother of two beautiful boys; age 14 months and 7 years old. Every day is a battle. Trust me! Sometimes I just want to rip of that side of my face. I honestly think if it weren’t for my boys I would be in worse shape, but some days I feel like a less-than mother to them.
I would like to share with you a story- in 2008 my husband and I lost a child; six months later I started experiencing severe cramping, extended periods, painful intercourse and horrible lower back pain. I begged and pleaded with my gyn to check me out, but he declined- said it was in my head. All he could do is put me on birth control, which my husband and I were trying to conceive.
Eventually, my frustration got the best of me and I found another doctor, who promptly did surgery to confirm endometriosis. He did an excision surgery and viola I was pregnant three months later. After my youngest was born I had a hysterectomy and it changed my life for the better. My point is: not all doctors are created equal. I know TN is different from endometriosis, but please … Please tell your daughter not to give up. She may have to go through a few doctors, but someone will help her! Please email me teresapalso@gmail.com.
Vonni Boynton said:
I can’t believe you are still functioning after having TN for that long. My daughter has had it about a year and she has already had the,(I think the name of the surgery is WMD) it is the one where he cuts a hole in her scull behind her ear.Needless to say it did not work. Before the surgery she thought it was horible but after it was totally unbearable. She was in the hospital last week and when the Doctor called me I could hear her in the background crying out “Kill me , please somebody kill me.” If you are a mother you know how hard that was for me to hear. Two days before that she went to see her surgeon and the only thing he had to say was “I did the surgery right” when my daughter told him “obviously not or the pain would not be ten times worse.” he told her there was nothing more he could do unless she wanted to have the surgeryagain.This doctor was from the Spine and Brain Center in Las Vegas,Nv I would appreciate any and all advice.
I think it's great you're starting a pain journal. My doctor used to have me keep a pain log, where I stated my pain levels five times a day. After a while I questioned if one of the reasons I think about my pain 24/7 is not only because I experience it, but because I was spending so much time on the log. And if I were having a good day, after logging that, I felt "jinxed" and sometimes pain would get worse. So I stopped. However there have been several times where I wished I was still doing it, to try and find trends and the such. I may start again.
I'm sorry to hear you responded to the Prozac with suicidal thoughts. Good thing you got off of it. I just wanted to let you know that there are a few classes of anti-depressants, so just because Prozac did that, it doesn't mean all anti-depressants will, and there are other options you could speak to your doctor about.
Also, I think every med I've ever taken for my pain has had a warning about the possibility of suicidal thoughts. I just wanted to point that out so you don't let it scare you too much. When starting new meds, if you have bad thoughts, just tell yourself it's the pills and then get off of them. But don't deny yourself meds that might help you, and not give you those thoughts.
The fact that you were able to determine it was the meds causing the thoughts is a good thing. If you're afraid of the trazadone, you don't have to take it. I know how much fear adds to our problems. At the same time, since you know meds cause these thoughts, you could try it, and immediately stop if you feel it affecting your thoughts. I'm assuming (scary to assume, I know) that your doctor gave you this med for a certain reason. I guess, do you trust him/her is the big question.
I take Clonazepan which think is Klonipin (sp?) to ease my anxiety between attacks/episodes (ie if I get 2-3 good days I know that right around the corner it is coming) and I take it to sleep (1 every hour until your out with a max of 3). it has made my life much better
I also take Klonopin and find it to be very helpful. Not only does it control my anxiety, it also helps the burning aspect of the pain, and keeps me and my nerves calm in general. It's a slow, long acting med, so it doesn't knock me out like Xanax or others in that family.
I imagine the process of keeping a pain journal can be daunting. That is why I also have a gratitude journal. When I am at my worst I go back and read previous entries; it helps tremendously.
At my dr appt today he ordered klonopin; once at bedtime. I will see how it goes. I know it’s not an antidepressant, but I do know my pain gets worse with a lot of stress and anxiety. For now I don’t feel depressed, but just wanted to know what options I have since medications change daily, I hear a lot of good things about Pristiq, anyone tried this?
crystalv said:
I think it’s great you’re starting a pain journal. My doctor used to have me keep a pain log, where I stated my pain levels five times a day. After a while I questioned if one of the reasons I think about my pain 24/7 is not only because I experience it, but because I was spending so much time on the log. And if I were having a good day, after logging that, I felt “jinxed” and sometimes pain would get worse. So I stopped. However there have been several times where I wished I was still doing it, to try and find trends and the such. I may start again.
I’m sorry to hear you responded to the Prozac with suicidal thoughts. Good thing you got off of it. I just wanted to let you know that there are a few classes of anti-depressants, so just because Prozac did that, it doesn’t mean all anti-depressants will, and there are other options you could speak to your doctor about.
Also, I think every med I’ve ever taken for my pain has had a warning about the possibility of suicidal thoughts. I just wanted to point that out so you don’t let it scare you too much. When starting new meds, if you have bad thoughts, just tell yourself it’s the pills and then get off of them. But don’t deny yourself meds that might help you, and not give you those thoughts.
The fact that you were able to determine it was the meds causing the thoughts is a good thing. If you’re afraid of the trazadone, you don’t have to take it. I know how much fear adds to our problems. At the same time, since you know meds cause these thoughts, you could try it, and immediately stop if you feel it affecting your thoughts. I’m assuming (scary to assume, I know) that your doctor gave you this med for a certain reason. I guess, do you trust him/her is the big question.
Update: doctor wanted to leave neurontin and percocet. He added imitrex injections and klonopin. At one ER visit I was given an injection of imitrex and it helped bring the discomfort down. Ironically, the imitrex pills did not provide the same relief as the injections.
Neuro appt in two months - may switch to Trileptal once I get there. I’m worried about side effects of drowsiness, dizziness, mental confusion? Since
I take care of a 14 month old during the day.
I may post in the forum to see everyone’s side effects and general concenous,
Thanks, Crystal. Just want to have options in my mind when it comes time for the discussion about antidepressants. I’ve read a few patients on here are on Effexor.
The klonopin helped me get some great sleep last night, which once I’m asleep I am fine – getting to sleep is the harder task.
Yay to six hours of sleep!!!
crystalv said:
I have never taken Pristiq and I don’t know anyone else who has taken it either.
I do know that Pristiq is the metabolite of Effexor, so it might have similar results.
After my surgery I became very depressed. I am a very up person, never been depressed in my life and I am 68yr. old. I didn't know what was wrong, I didn't eat at all or drink water, I stayed in bed in the dark and cried. I really thought I was dying and my husband did too. I have such a wonderful husband, when he realized he couldn't do anything for me he called my surgeon and he said "she is depressed,tell her Dr. to prescribe her an antidepressant."The next day my doctor had a precription waiting at the pharmacy(Effexor) and it works. The only good thing that came out of all this is I lost 50 pounds. I weigh 150 now and I've kept it off for 18 months. I thought the operation I had was the worse thing that ever happened to me. God Bless you and all of you that are dealing with TN. All I had done is Knee replacemen surgery. I feel so ashamed of myself since I have seen all my daughter is going thru, she has a really bad case of TN. When she has an episode she begs for someone to kill her. I am not afraid of someone killing her but I do worry that she may take her own life. I feel for all of you because I can see how bad it is but I pray for all of you too, so please keep the faith. GOD IS AWESOME.