Need honest opinion

General General TN & GPN (Old Site)
1

Okay. I finally saw a neurologist on July 31st. He agreed it was trigeminal neuralgia, but didn’t specify type 1, 2 or both. I have constant face pain. I have throbbing, aching and stabbing. I also have zapping and burning with lots of ear pain.

So, my GP put me on neurontin 3x a day @ 800mg. He also prescribed klonopin, Trileptal, cymbalta and Percocet.

My last visit with my GP he said he was worried about the Percocet and when I went to the neurologist I asked to be on something less addicting than percocet. The neurologist prescribed tramadol.

Well… I had a bad reaction to tramadol. I got red splotches on my arms, severe stomach cramping, severe diarrhea and headaches. I called the neurologist a week ago to inform him of the reaction, but haven’t heard back.

He was also supposed to order an MRI, but I checked today and it has never been ordered.

The neurontin curbs the zapping and most of the burning 80% of the time. However, nothing seems to help the stabbing, aching and throbbing.

I’m lucky if I eat once a day.

I don’t know what to do. I can’t take amptriplyline. I know lidocaine patches and creams are available, but the doctor feels it won’t help with my ear pain. I’m at a loss. I don’t want to be labeled as an addict because I’m not. I just want relief.

Neurologist said I should consider gamma knife surgery. What are the success rates with that for type 1 & type 2?

I had to lower my neurontin back to 3x a day because I started feeling depressed. I mean really depressed. He wouldn’t let me take the cymbalta with tramadol, but now that I’m not taking tramadol I want to try cymbalta - has anyone has luck with this antidepressant and TN?

Ive been throwing up a lot lately and not sure if it’s from stress or pain. I had to get fluids last thursday.

My medical bills are outrageous. To boot the neurologist told me I could go back to work as a manager even though 90% of my day deals with talking (which is a major trigger). He said to just push through the pain.

Then I told him that when I take my neurontin it seems to amplify my neuralgia when it first kicks in and then it goes away. He said he’s never heard of this.

The Trileptal is not an option right now because it creates some serious brain fog and I have kids to care for. My
Husband was also injured at work and has limited use of his left arm.

Sorry for the long post. I’m just feeling sooooo lost.

2

If I had to do over I would have tried Trileptal before trying the Gamma knife procedure. I got 3 good years of intense pain relief from the procedure. But when the pain came back I had to get used to it ALL over again and I had major depression. Also my tongue went numb on the right side from it and my ear went numb and got hypersensitive and I couldn't lay on my right side. So in hind sight I would have tried Trileptal first before doing GKRS or any surgery. Just my two cents worth... I have had success with Effexor and amitriptyline for pain. I take both!!

:~ Min

3

Hi there,

I'm very sorry to read that you're in so much pain and having to deal with your doctors, medical bill etc. on the top of it. I can't really answer your questions, I just want to say that regarding Neurontin I had similar experience - I was feeling low most of the time, I cried, well, every day basically, my productivity at work was down by at least 50% due to me being tired and still in a lot of pain. I stayed on Neurontin for 1.5 months until my neuro put me on Lyrica. I'm doing a lot better now though I still get pain and I still feel somewhat depressed. I'm not totally sure that trying to push through the pain is a good idea .... when I get pain I find it more helpful when I can lay or sit down and just have a quiet moment to myself. Having said that, everyone's pain is individual. Are you happy with your current neurologist? Do you feel he's got a real interest in trying to help you? Do you think he's experienced enough in treating TN? I've had some bad experience with doctors (well, dentists) before, and I instinctively knew they were not doing a good job but I didn't care that much at that point. I am much more cautious now because I know that a good doctor can make a huge difference. I hope that you'll get answers to your questions and that you'll feel better soon.

Take care,

Oli

4

Sorry to be blunt -- please get another neurologist

You might be able to take Welbutrin for depression - least side effects that I know of -- and because of my son - very versed in anti-depressants

cymbalta does help many here -- but the withdrawl can be hell

Sounds like you are a candidate for temporary disability - but i understand you can't do that for now

this is what drove me to get an MVD -- meds suck period

I was only in bed 3 weeks -

Keep posting your frustrations

call pharmacist for drug questions - they answer much faster!

There is also lidocaine mouthwash and nose spray -- would imagine nose spray would get in the ears as part of sinus system?

5

Thanks for all the feedback. I have noticed with the neurontin I feel more depressed. When the neurologist upped my dosage to 3200mg it got worse, so I went back to 2400mg.

The neurologist spent an hour with me. He basically told me all I could do is take anti seizure meds or have surgery. I’m only 31. He did what me to try Tegretol, but I can’t afford to have my liver panels checked every three months at this time. Hence my medical bills, which is causing more stress.

I have an appt with my GP tomorrow and going to ask about Wellbutrin. It’s funny that was mentioned because it was in my plan.

I really want to try the Trileptal, but he said I’d have to have my sodium levels checked. I’ve tried it 5x and just felt so disoriented. I only took it at night.

Not sure my neurologist is knowledgable in TN besides the basics. :frowning:

Thanks for all the input. Feels good to know I’m not alone in this fight.

6

Sorry to hear of the troubles you're going through. I'm currently experiencing similar problems. I'm 35 years old. My neurologist initially prescribed Tegretol which did help the pain, but I couldn't continue taking it due to photosensitivity. When he took me off of Tegretol he actually didn't prescribe anything else and told me to just "see how it goes" and let him know if the pain came back. What a joke!!! Of course it did (as if there was any chance that it wouldn't) since it never totally went away, only improved on the first medication. Our 2nd attempt at treatment was with Trileptal, which actually made my pain much worse. I believe I have type 2 TN although my doc also never specified between the two. Both medications made me an absolute zombie and Trileptal made me sick on top of that (nausea, headache, extreme fatigue). I've only been functioning at about 50% of my normal productivity at work. I'm now off of Trileptal and trying Neurontin (gabapentin) which seems to be helping a little bit so far (I've been taking it for about a week now). I've also been taking Lortab or Norco as needed for months, which unfortunately has meant on a daily basis for the level of pain that I have. My neuro doesn't want to continue prescribing narcotics though, so I'm probably about to experience a very rough period as no anticonvulsants have completely relieved the pain without also taking an opiate along with it. I understand your frustration. I too have experienced depression and feelings of hopelessness. I'm already on Zoloft so I really don't feel comfortable adding another antidepressant (I don't even know if that's an option). It sucks being on antidepressants and still feeling depressed. TN is such a difficult and life changing condition. At least we have this forum to help with venting our frustrations.

7

I really DO NOT KNOW what to do anymore.

I love my life; my kids, hubby, house, family, friends, etc.

I feel stressed more than anything. My heart beats sooo hard. I only want to cry when I feel at my wits end with docs, tests, drugs and hospitals.

Good news is my MRI is scheduled for Aug 28th but neurologist already told me 99% of the time with TN patient MRIs are normal.

Going to do some research.

8

Have you looked on the recommendations page for Neuros around your area? You might want to see if there are any local support groups, other members around your area or any local studies going on. Sorry you are having so many issues at one time!

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Kismet - Klonopin should help itty bitty with the pain and BIG on the anxiety and STRESS of it all. MRI is usually done with contrast for TN to be seen -- but once you have it, you know it.

My top surgeon doesn't even do MRI anymore - but good for ruling out MS.

Keep Posting!!!!

10

Hi Kismet…it sounds like u have TN type 2B which is the combination of zapping pains and an underlying constant pain…I also have those symptoms and have 2 children. I work as a nurse and have found it to be extremely difficult. I have to say I have the best neurologist available though!! He is very on top of all the newest meds and treatments. I actually just saw him today. I have had an unsuccessful MVD and multiple nerve blocks…none of which worked. The type 1 pains seem to be easier to control but, the underlying pain is such a beast!! I had a peripheral nerve stimulator placed and it was awesome until it got infected and had to be removed…I’m in the process of clearing the infection and plan to get it replaced. I am on max dose of trileptal 2400mg/day, baclofen 40mg/day, cymbalta 60mg/day, and amytripyline 20mg/day…I have some drowsiness with my meds but never feel unsafe to care for my kids…I have increased doseages slowly over the years and had to remain on the meds even with the stimulator because it didn’t cover my teeth pain…I wish so badly that somebody would have told me years ago that the chance of MVD working for type 2 pain was slim and definitely do not have any type of procedure that damages the nerve. I take one day at a time…sometimes hour by hour…oh I am trialing some lidocaine patches until I can get the stimulator replaced…hoping for some relief…hope this helps!! Hang in there…and definitely get on cymbalta…it does wonders for ur depression!! ((Hugs))

11

There are many more drugs to try other than the ones you've mentioned. In all three of the areas you're asking about (antidepressants, opioids, and anticonvulsants). For example, you could be on Lyrica/wellbutrin/vicodin (if the tramadol gives you a reaction, try something else). I think your neurologist needs to keep trying different things that work for you -- pushing through is not an option. That should be possible without spending a bunch of money, if the neurologist knows what they're doing. It's frustrating for them when things don't work, but that's why you've been sent to a specialist -- to figure it out.

12

Kismet, I know you say you have tried Trileptal, but I wanted to know if you gave it long enough. I felt bad for the first 3 to 4 weeks but it got better. Now the only side effect I have is word retrieval. Just thought I'd mention on the off chance this might help... Also Effexor has been a real big help for me. My GP happened upon it while treating me for depression. But I aso wanted to mention nortriptyline and amitriptyline they are also known to be helpful in treating type II pain. I wonder if the neuro started you on too high of a dose of trileptal too. :-

13

I still haven’t heard back from my neurologist just from his scheduling center about my MRI w/o contrast on Aug 28th.

My GP prescribed Wellbutrin and Tylenol 3 (I told him I wanted to stay clear of stronger opioids for now). He is worried about the fact I’ve lost another 2 lbs (I’m 5’5 @ 112 lbs). I’m underweight. I told him its not for lack of hunger, but not wanting to deal with pain. Also sometimes I just feel so nauseous.

I did look at the doctors listed on this site, but none were covered by my insurance. I did check the Medical University of SC and two of their neurologist are in my network. The two also have years of experience treating TN. Only downside is I have to wait until the end of January before my appt and drive 2.5 hours to the appt.

I really have heard great things about Trileptal, but I can’t get past the zombie feeling. I wish I had 2-3 weeks to give myself time to adjust, but I don’t. My 17-month-old is always on the go. He never slows down unless he’s sleeping. They tried lowering the dose, but still had issues. I’ve only done 4 consecutive days.

For now I’m trying to grin and bear it

14

I would ask him for the percocet again, in case you need it. There is a difference between people who take it to get high and those who take it to stop pain. Just have it on hand as a just in case scenario. People in pain rarely get addicted to their pain meds. The bad thing is that it probably won't work very well.

When I'm in pain, I'll take just about anything to make it stop. Ask for antinausea meds. The trileptal makes me nauseous as well.

15

Kismet, My heart goes out to you, all the suffering is hard to deal with on a day to day basis. I can only tell you I was on Tegretol and various different pain meds and after awhile none but Tegretol worked. It dosen't last forever though, you have to increase the dose as time goes by. I simply got tired of the side affects, foggy thinking bothered me the most. I opted for MVD surgery and I am 6 months post-op. I have not had any pain at all since the surgery. I had a top skilled surgeon who knew everything there is to know about Chiari and Trigeminal Neuralgia, to which I had both. Having the best Doc you can find is the key. LOL My first question to him when I saw him was, How many surgeries for TN do you do in a year? I pray you will find a great one who can help you if you decide on MVD. Anything I can help you with, just sing out. God bless.

16

Hi, I am very sorry to read about your frustration and pain. When everything does not work to stop the pain, we tend to feel depressed. I am allergy to opioid . I felt extremely hungry and weak, nausea and clammy after taking them. Neurontin made my pain worse . After “experimenting” with various kinds of drugs, I ended up taking Lyrica and Clonazepam . The medical bills is high and it is stressful to foot the bill, but what choice do we have ? I have been taking Lyrica for many years and there is no side effect so far. However, it is very individual and I hope you get relief soon.

Best regards.