I'm falling apart

Hey everyone,

My pain has been so terrible lately and I feel like my doctors have no idea what they are doing with me. Making bad suggestions or no suggestions. I have a few questions to try and put my mind at a little bit of ease:

1. I asked my neurologist if I could increase my meds (nortriptyline and gabapentin) when I am having a bad pain "attack" which usually lasts a couple of days for me. He says that it would not help me to increase my meds and that they take weeks to build up in your blood stream on the new dosage (I have trigeminal neuropathic pain, by the way), however, when I have titrated up on my nortriptyline I feel a significant amount of relief the next day each time. So why are they telling me that this will not give me relief when it has? Am I crazy or have others experienced this?

2. I clearly have neuropathy because I did not experience any symptoms whatsoever until I had 3 deep fillings on back molars. Since then, nonstop pain. But, I see many people talking about the burning, tingling, and occasional numbness that they experience, but I have none of those. My only sensation has been aching. It when it gets really bad, it is still an aching sensation, just more on the level of a migraine. Does anyone else describe their pain like this?

3. I feel like this "condition" is progressing very quickly with me. At first it was only lower teeth and ear pain, then it spread up a little, then to the other side of my face, then all the way up to my scalp in a matter of weeks. Now, I have pains in the back of my neck and deep in my ear. Literally everywhere on my face/head hurts at some point or another. I have also recently developed facial spasms on both sides of my face, although only one side does it at a time. This all started only 6 months ago. What am I missing here? Why is this spreading throughout my body, so it seems? No doctor has answers for me. I have a clean MRI, which was pointless to begin with. This clearly began in the dentist's chair. We keep changing around my medications or increasing the dosage because it seems like my pain keeps beating the meds. When I titrate up, I get great relief for a few days to 2 weeks or so. Then it's back to bad pain. I just don't understand why this seems to be so aggressive in my body.

Thank you all for your input. I just don't know where else to turn. I'm in the process of moving and already trying to find new doctors nearby that hopefully have more experience with facial pain (even though mine claim to have a lot of experience with it).

Everything you have said describes me right now. I’m currently in agony and have had no relief for 4 days. I’m on 600mg carbamazepine a day and it’s been so bad I’ve been popping nurofen and co-codymol like candy even thought I know it doesn’t really help but I don’t know what else to do. I’m going to my doctor tomorrow to demand some either kind of med because this clearly isn’t working anymore and I can’t cope with the amount of pain. I hope you get some answers. I also had an MRI which came back with no answers.

I’m so sorry. My pain also started with a cracked pulled tooth. Having a hard time with carbamazepine as well. Pain and sick no less.

I am on gabapentin and nortriptyline as well. The nortrip seemed to help my intense headaches somewhat. I started with the deep aching 24/7 for a full year before my GP thought to try gabapentin. Severe stress is one of my triggers, change in weather as well although not as bad of a trigger as the stress. When the pain gets worse, I will often take an extra dose of gabapentin and or the nortrip. Blissfully, I have been on a slight remission for a few months. It was nice to feel semi-normal again. I titrited down my meds a bit and the pain is coming back. It was good while it lasted as I had use of my brain during those months.

When a new neurologist experimented with my meds and sent me into painful withdrawal I developed nerve pain all over my body. It subsided some when I went back to the gabapentin and stopped the topomax cold turkey. Actually, it took several months to get somewhat back to my normal during which time I had to more than double my previous dose of gabapentin to get similar results. After several months of this I slowly went back down and enjoyed less nerve pain in my body but it has returned. I barely slept last night from the constant pain from head to my left foot. At times, even my stomach and back tingle/burn. My face from the lip to the eye socket stung/burned and tingled and I had the same feeling in my left hand and forearm. My lower left leg had similar pain.

Elle, I'm so sorry you've been feeling so rotten. I still take percocet when the pain gets horrible, even when it doesn't do anything for me. Maybe it helps me feel a little more in control of this crazy situation. I've gone through the gambit on medication and nortriptyline has definitely been the best help, even though I don't have good relief. So sorry you are having a hard time. :(

Elle13 said:

Everything you have said describes me right now. I'm currently in agony and have had no relief for 4 days. I'm on 600mg carbamazepine a day and it's been so bad I've been popping nurofen and co-codymol like candy even thought I know it doesn't really help but I don't know what else to do. I'm going to my doctor tomorrow to demand some either kind of med because this clearly isn't working anymore and I can't cope with the amount of pain. I hope you get some answers. I also had an MRI which came back with no answers.

I'm sorry you are having a hard time with the meds, Susan. It just seems like there must be something better than this for us.

Susan Mella Schwartz said:

I'm so sorry. My pain also started with a cracked pulled tooth. Having a hard time with carbamazepine as well. Pain and sick no less.

Shadow, I am beginning to think that the change in the barometric pressure affects my pain (even though there is no scientific evidence to support this), but I've experienced it along with many of my patients I see.
Thank you for sharing all of this. The whole body pain sounds terrible. The difficult thing for us is knowing what is a side effect from all the meds we are on or when we need to start looking into something else potentially going on (as if the facial pain wasn't enough).

When you titrated back up on your meds, did you notice an immediate difference in your pain or did it take a while?


shadow2 said:

I am on gabapentin and nortriptyline as well. The nortrip seemed to help my intense headaches somewhat. I started with the deep aching 24/7 for a full year before my GP thought to try gabapentin. Severe stress is one of my triggers, change in weather as well although not as bad of a trigger as the stress. When the pain gets worse, I will often take an extra dose of gabapentin and or the nortrip. Blissfully, I have been on a slight remission for a few months. It was nice to feel semi-normal again. I titrited down my meds a bit and the pain is coming back. It was good while it lasted as I had use of my brain during those months.

When a new neurologist experimented with my meds and sent me into painful withdrawal I developed nerve pain all over my body. It subsided some when I went back to the gabapentin and stopped the topomax cold turkey. Actually, it took several months to get somewhat back to my normal during which time I had to more than double my previous dose of gabapentin to get similar results. After several months of this I slowly went back down and enjoyed less nerve pain in my body but it has returned. I barely slept last night from the constant pain from head to my left foot. At times, even my stomach and back tingle/burn. My face from the lip to the eye socket stung/burned and tingled and I had the same feeling in my left hand and forearm. My lower left leg had similar pain.

Hi Liz,

Sorry to hear that you are experiencing such pain. I've been there, so I can empathize.

To answer your questions from my own point of view:

1. I am on gabapentin and amitriptyline (very similar to noritriptyline). My doctor has told me to increase both meds when I experience a 'flare up' and this seems to work for me very quickly. It doesn't take more than a few hours to notice relief. Because these meds tend to make me blurry and slow, I usually back down to my normal, lower dose as soon as I get some relief.

2. My pain also began after a severe infection below the root of my tooth and a tooth extraction. I have the constant aching pain, but I had also had intermittent knife-like stabbing in my ear (same side) for about a year. When I experience breakthrough pain, it is that stabbing, unbearable type.

3.There is so much doctors don't know about this diagnosis; it seems like it is mostly guesswork, unless you are one of the patients whose MRI shows vascular decompression. But, I've read others' stories and sometimes the vascular decompression doesn't show up in MRIs and is only found during surgery (a whole other place I'm not yet ready to consider). My oral surgeon (as do many other doctors) only diagnosed me based on what medicine he 'tried' that actually worked for me.

I feel like a broken record as I make these recommendation to everyone:

This website and the caring people here have been a Godsend. Read all the articles and information here, Read the book, Striking Back, read all the more recent (past 10 years) articles on PubMed (research based), and arm yourself with information before you see your doctors. Go prepared to advocate for yourself and, if the doctor/s you see are not knowledgeable about/have experience with TN and/or are not willing to educate themselves with information you are sharing, then search for doctors who are.

Personally, I have also found that my overall health helps me to manage my TN pain, so I adhere to a healthy diet (no sugar, no wheat, no prepared foods, no alcohol), I exercise moderately (walk, bike, yoga), use meditation, look for joy in my daily life, pace myself to include rest (even though I'm wired to go full speed ahead at all times), and I see a psychotherapist when/if I begin to feel hopeless. I am so fortunate to have wonderful support, encouragement, and understanding from family and friends.

I believe that medicine in general will begin to move in a different direction going forward. Patients will no longer be passive, but will become involved in their own care. With TN, it seems like we have to work this way since most doctors know so little about it.

Sorry.....long winded.

I wish you healing.

Rissmal

Rissmal,

Thank you so much for your input. I think the titrating up/down depending on flare ups is a good plan despite the fact that my doc said it wouldn’t work. I went up to 1800 mg on the gaba and I feel better today.
I appreciate your advice. I have read Striking Back cover to cover and I like some parts of it, but overall felt as though it was catered towards type 1 and left me feeling like there’s not really much hope for me, having trigeminal neuropathic pain.
I am very thankful for this forum and all the strong, wonderful individuals on here. It’s definitely a great support.

Liz, keep in mind that Striking Back was written 11 years ago, iirc, although I believe it has been updated since. It is still the best resource we have out there other than LWTN site. Have you joined the TN2 group yet? It is not as active as the main discussion forum here but is helpful in that everyone on there is TN2. We are not alone.

I have read through all the TN2 group discussions. I agree this is the best resource we have and I am very thankful for it.

shadow2 said:

Liz, keep in mind that Striking Back was written 11 years ago, iirc, although I believe it has been updated since. It is still the best resource we have out there other than LWTN site. Have you joined the TN2 group yet? It is not as active as the main discussion forum here but is helpful in that everyone on there is TN2. We are not alone.