first of all, of course I don't mind you jumping in the thread - I know that Trigeminal Neuralgia is a horrible painful disease, and that it is pretty rare. Like I said to Jill, we TN'ers must stick together!
I'm sorry that you are in so much pain. I know all too well how painful it can be. Can I ask you some questions, then maybe with your answers I can offer you some advice.
Are you taking any other medications to help your neuralgia other than Tramadol (for example Neurontin, Tegretol, Dilantin?)
Have you had any other diagnostic tests ( Neck x-rays, CT scans)
The way that you describe your painis almost exactly as i would describe my pain (unmedicated) My initial pain was back of head (occipital region) feeling of something crawling inside my ear, pins and needles above my right eye and then BAM! it hit hard, the repeated electric shock pains in my face, I could visualize lightening branches spreading across my cheekbone. I've had sensitive teeth - had them checked and they are fine. Its just these darn nerve pains that make it feel as if there is something wrong with my teeth and jawbone. Sometimes I put benzocaine gel on a q-tip and put it on the offending tooth to numb it. Sometimes the skin on my scalp "crawls" or feels sunburned. I have gone so far as to put EMLA cream (Xylocaine/Prilocaine) on my scalp to numb it up. Made for a very unnatractive hair style
Neurontin is my lifesaver, although it does make me goofy (or as the people I work with would say, goofier
Please post back, I will check the board again tonight ( I am in CA so you are 8 hours ahead of me)
You are not alone, big, big hugs across the pond to you, I'll try and help you as best I can.
Hi Heather, you really don't know how good it feels that someone is there. It's 6 am here, and I have been up all night again. The Tramadol doesn't touch the pain. Sitting upright in one position and not moving my head/neck at all seems to be easing it slightly right now, but my jaw is rigid with about a half inch gap between top and bottom teeth and my right eye is tearing constantly. No shocks for a short while though.
I've been prescribed nothing else for the pain and no tests were even mentioned when the doc diagnosed me. I am going back this afternoon though, I need better pain meds for sure. I am signed off sick from work. But I don't know how long I can go on with this, it terrifies me :'( I have been so close to going to casualty so many times this week, but they are useless. I have broken down in hysterics (which really isn't like me) more than once!
The skin on my right hand side forehead is so sensitive even a strand of hair brushing it is excruciating. It's been constantly like this. My scalp is sore, but not all the time, but I have the crawling sensation over it. My cheek feels like I have been thumped hard and feels so swollen but doesn't look as if it is. My eye tears and half closes when my jaw clenches. My lower jaw I can't even describe the ache and then pain and then ache, and my teeth I think i'd rather pull them out one by one myself than go through this. I can't brush my teeth, wash my hair, or bathe. I am so miserable and depressed and I suffer from depression already. I am so so sorry to burden you with this rant. My DH assures me that we won't leave the surgery today without some sort of positive answer or cure, other than that I am going to have to ask to be hospitalised. I have not eaten and hardly drunk in two weeks, lost over 16 pounds. I really don't know what to do
I am so so so sorry, this sounds so dramatic I know.
Please don't worry about being dramatic - its hard not to with TN or other Facial Neuralgias.
I'm so glad to hear that your DH is supportive -that is a huge help both at home and when you go to the Dr's. My DH was awesome when I was first sick because I was such a terrible mess that i really needed someone there during Dr's apointments to bring up such things as symptoms, need for pain relief etc.
Now what I thought might be helpful (and I hope that you don't think its presumptious) is a list that you could take with you that you and your DH can write down before your appointment with your Dr.
Here are some suggestions:
Ask your Dr for a medication that targets nerve pain (gabapentin/lyrica/tegretol/dilantin etc) ask about adjuncts (baclofen/klonopin/amytryptiline)
Ask for adequate pain control (hard with neuralgia, but something stronger than Tramadol - like oxycodone or I believe that they use a type of codiene in the UK that we don't use here?)
Ask for adequate diagnostic testing - c spine x rays (useful for diagnosis of occipital neuralgia) thin slice MRI with contrast
Ask about local anaesthesia - lidocaine patch (called lidoderm in the US) or compound creams - I have one with Tegretol/Ketamine and Lidocaine.
Ask about complementary therapy such as accupuncture, massage etc
Primrose, I also understand that the health care system is a little different here than it is in the UK ( I grew up in London) - it is much easier for me to say "oh, I want to see such and such a specialist neurologist" so I don't mean my suggestions to sound like demands. I do believe that there is a Universal right to adequate pain relief that knows no borders. And my last experiences of going to casualty (ER for those here reading this) do not leave me confident that you would find relief from this disease there.
If you feel comfortable ask about future surgical relief if and when your pain cannot be medically managed (MVD surgery, Gamma Knife)
You are not burdening me in the slightest with your "rant" -its not a rant to me - it's a perfectly rational cry for help when your world is falling in. Four months ago I would not have been in the position to answer your post - I was in so much pain - and then even as my pain became managed I fell into a pretty deep depression. Things are much better for me now and if I can help you just the tiniest bit that would make my day.
Well I'm going to hit post now - its 11:15 local time and I'm fading fast from a long, long day including work - yes I have recently been able to return part time to my job so things are looking up.
Please post again - I tend to be somewhat of a natural insomniac so I may be awake in the middle of the night (Lunch time by you!)
Thinking of you and sending more hugs
Heather in CA
oh, btw - you are also not alone in Wales - I have an internet friend suffering from Trigeminal Neuralgia that I met on a different board. Smalll world, huh?
Thank you so much Heather, I really can't tell you what a comfort this message has been. Thank God I have a pen to use on this laptop cause not capable of hitting a key right now. will ask DH to make that list when he gets up. Goodnight and sleep fight for now, will keep you posted later. Sorry message is short suffering right now.
Much love and my most sincere thanks for understanding.
I finally found out that I have trigeminal neuralgia after seeing countless doctors, ENT's and dentists. I wish I could offer advise to you but this is new to me.
My pain is a constant burning deep in my right ear that goes along my jaw, top and bottom teeth and along the side and top of my head. My skin feels like it is sun burned too and it hurts if I touch it. My neck muscles are very tight on my right side. I do not get the electric shock just constant burning non stop.
I wish you the best of luck and please do not give up. All I can offer you is a big hug and I am here if you just need someone to vent to. Take care of yourself and please keep us posted.
Heather: You are a true angel. I really appreciate your knowledge help and kindness. Thank you again and a big hug to you from me in Michigan.
Thanks for responding to me. I am so sorry that you are both dealing with this pain, but at the same time I am glad that there are people who can relate to what I am feeling!!
This post may be a bit random and I shalll explain why.....
Was meant to see my doc this afternoon but was too ill to actually make it to the surgery, DH rang and asked for someone to come out but they were having none of it. I lasted until 9 pm when I thought I would have to go to Casualty (this being a problem as I also suffer from depression anxiety and a fear of social situations), when someone told me about an out of hours GP service. Rang them and explained the situation and within twenty minutes they had me there and prescribed the highest dose of Cocodomol and a shot of morphine.
I definitely have TN and I have to go to the doctor first thing tomorrow where they will arrange an emergency MRI and suitable pain meds for the condition.
Sorry this post seems really selfish not answering anybody's questions etc, or giving sympathy but i'm feeling pretty spaced out right now and it's taking all my effort to get the facts down.
I will update you all for being so kind, and I am sure I will be more myself tomorrow,
sorry its late here and I've had an odd day - pain in my ear starting up again
Jill - it was so nice to see your message! your words were very kind How is life treating you? any relief yet from your increased dose of neurontin? Please keep me updated - I will keep you in my thoughts and prayers. Big hugs to you my friend.
Primrose - there is much more that I want to say but I'm so tired. I am glad to hear that you got some pain relief with the morphine and co-codamol. I think that this is the codeine that you use in the uk that I was thinking of - codeine and paracetamol(acetaminophen) ? I hope that it gives you some relief while you get stuff sorted out. I am sorry to hear that you suffer from concurrent depression and anxiety. I have suffered from almost a lifetime of depression and medication help for the last fifteen years or so. Having a chronic pain condition, especially an untreated one is hard to bear with depression. Hugs for you Primrose. A shoulder, and an ear are here for you as you need it. Please don't feel selfish for only giving your update and not answering questions - when the time is right you will I'm sure. I hope that your Dr.s visits tomorrow bring you relief.
I have to close for tonight - 'll check in again tomorrow. I hope both of you are getting sleep and well deserved pain free rest.
I hope you both are feeling good today. I thought I was getting some relief from increasing the neurontin but today it is raging again. The burning ear pain is what bothers me the most. If I could just get that to a manageable level it would be nice.
Heather, how long did it take for you to see some relief from the neurontin? Are you ever completely free of the pain?
I think I am stressing myself out thinking it isn't going to work. I need to be more positive but it hard while living in cronic pain.
Primrose: I hope you are having a better day today. My thoughts and prayers are with both you and Heather.
wow - its late again! another challenging day at work - I had a few ear zaps of pain to contend with.
which, I guess partially answers your question. I am not pain-free, but my pain is really quite well controlled with the gabapentin, occasional percocet and my lovely compound cream of tegretol, lidocaine and ketamine. The cream (which I just had to go out to my car and get at 11pm) is really helpful, if not somewhat of a pain applying three - four times a day.
As far as how long did it take to get relief from the pain, well to be honest, I did not get any significant relief with gabapentin until I hit the 1200mg daily point - its better at 1800mg and might be even better at 2400mg but I lose my *spark* above 1800mg. It also helps that my Dr was quite compassionate with narcotic pain meds until I was more functional.
What dose are you at now? still no relief? I hope that soon you will be feeling better.
My only advice at this point Jill? ( cause I am not a Dr. )
Be kind to yourself, very kind. If that is a pedicure or gentle walk by yourself, or a big piece of chocolate cake, or some time with a loved one, chronic pain is sooooo emotionally debilitating over time. We MUST take care of ourselves as best we can. I had a couple of total breakdowns - I was beyond embarrased. My eighteen year old daughter scooped me up, put me in bed, lit a candle, put on some relaxing music and gave me a foot rub with lotion. I felt so bad for falling apart and although I know it was hard on her, she also felt less helpless, instead of being a bystander watching something horrible she couldn't control, she helped me beyond words.
So, tonight I wish for you relaxation, calm thoughts, peace in your environment and a pain free night.
wow - do I ever sound like a Northern Californian!
Thank you again for taking the time to help me and for letting me know what helps you. I happy that you are able to control your pain. It is horrible living with a chronic pain condition. I stress myself out so bad and that only makes it worse.
Your daughter sounds like a wonderful caring young woman. I have a 22 year old son who is very caring as well. My husband is okay with helping me but he gets frustrated because he really doesn't know what to do. We have been together since we were 16 years old and have been married for 25 years but this has really put a strain on our marriage.
I am currently taking 300 mg. of neurontin three times a day. I have had some relief but yesterday was terrible again. I called my Dr. and he said to increase to 400mg. in the AM and PM with 300 mg in the afternoon. Hopefully that will help. He also spoke about adding Elavil at bedtime but I am currently taking Effexor so I would have to wean down on that first.
I want to thank you again for all your help and kindness and I wish you a pain free day.
Sorry I have been out of touch but time seems to be in another dimension and I am in another world! Relief from the codiene didn't last!! I think I just had temporary relief and sleep from pure exhaustion.
I am having trouble concentrating but I wanted to say that I too have constant pain Jill. I saw a neurologist today, finally, and despite having been diagnosed with classic TN by three seperate doctors over the last few weeks, he has told me that I have Atypical Facial Pain Disorder (neuralgia).
He basically told me that no pain relief is going to work (which has made my depressive state so much worse). He did prescribe me an anti inflammatory because I have TMJ, but they did nothing for the pain and I felt drugged up to the eyeballs!!!
I am going back to see my GP tomorrow to request Amitryptyline (misspelled) or Tegretol (also prob misspelled) (I feel so stupid at the moment, I usually am able to focus and spell)!!! and something so that I can sleep.
I am currently off sick from work with my depression and anxiety anyway, but there is no way I am going to be able to return to my job if this pain remains constant and the meds (if I get any that help) make me incapable of functioning!!!! I guess I better speak to the doc about incapacity???? I don't know, I just felt like I couldn't go on another hour this morning, it seems pointless!!!!
I do feel so so selfish cause I just seem to whinge and not respond to your suffering, I am not usually a selfish person, I don't even feel like me anymore!
When I am able to think though, you are both in my thoughts and prayers and I thank you for being with me through my lows xxxx
I'm so glad to see that you posted again - I'm sorry that you are still in so much pain - I know that the narcotic type of meds don't really completely solve neuralgia - sometimes they do take the edge off of it. You are right in thinking of a med like Tegretol or perhaps Gabapentin. Amytriptiline in addition too.
Perhaps there is a great difference between atypical face pain and TN, perhaps not. Some people believe that AFP is the beginning of TN maybe its pain in its own right. I am not even sure of the labels seeing as I have been diagnosed as TN with occipital neuralgia too. I also have deep, stabbing pains in my ear likely Geniculate Neuralgia(which seems to occur with TN) I seem to have so much stupid neuralgia by so many different names. One thing is constant. PAIN regardless of the different diagnosis - nerve pain hurts and there are some meds that DO help nerve pain.
Please don't believe that there is no relief - many if not most people can find some relief using anti-convulsant meds, even if it is not a permanent fix. It just takes perseverance and a Dr willing to keep trying for you.
Please, please don't feel that you are being selfish. If I can provide even the tiniest bit of support - well, then it means that I have made positive steps in my own battle with this horrible pain.
I will be holding you up in spirit tomorrow. I hope that you get relief. Please post and let me know how you are doing.
Its late here and I am sure that my typing is horrendous!
I'm just checking in to see how you both are feeling. Good, I hope. I just started amitriptelene (sp?) 10 mg at bedtime along with 400mg of neurontin 3 times a day. It's helped some, the pain is not as intense but it is still there. I guess any relief is better than nothing.
The meds make me feel sleepy and a little bit dizzy. I'm hoping that goes away once my body gets used to them. My muscles are so tight on the right side of my neck and shoulder (same side as the TN pain) I'm not sure if this is due to the TN or what.
I go see another Dr. tomorrow that does some type of manipulation that is supposed to help face pain. He is an Osteopath that my Dr. has recommended me to see. I never heard of this as a part of TN therapy but I will go to see if he thinks he can help me manage this pain.
Well that enough about me, how are each of you doing? My thoughts are with both of you.
I was recently dx'ed with Trigeminal neuralgia after trying to figure out what was wrong with me for a very long time! My g.p. sent me to a neurologist since I have another dx'ed neuropathy in my urinary/private area that is in constant pain and I use a 5% numbing ointment on daily. I get horrible shocks to one side of my face at a time, I have it bi-laterally but it only gets bad on one side at a time though I get really achey too. I also get sore scalp where it is hard to brush my hair and my teeth constantly hurt and I get bad headaches. I can not wear sunglasses or put a phone to my ear, even putting my hand on my chin can make the pain come out. I do get neck pain and the bones in my head hurt too, with bad aching jaw and strange tingling spasms near my temples when it is really bad. Lately the TN has been awful, I can barely eat and do not even think about eating or drinking something really cold, ouch. It is very depressing.
I also have Crohn's Disease, and I think this neuralgia and neuropathy was brought on from lack of B12, since I was not getting any B12 shots after having my terminal ileum part of my small intestine removed sugically 4 years ago. The terminal ileum is responsible for absorbing B12 and I have none! Recently I ended a 2 week daily loading dose shots of B12, and now my neurologist has me on weekly B12 shots. I have read and done research that B12 deficiency can cause these conditions, so you all may want to look into that. You can also have B12 deficiency for many different reasons, so supplementing would be a great idea with a sublingual form for all suffering from this horrible illness.
I started on neurontin, I am only in 6 days now, 300 mg twice a day, then I go up to 3 times a day in 5 more days. So far I have noticed it is helping a bit, I took some valium ( I use it for Crohn's spasming) when it was bad the other day and it did not slow the electric shoock pains down but it lessened my anxiety. Percocet does not even touch the pain of TN for me, it is unbelievable. I am hoping the neurontin works completely soon...I am feeling quite "loaded" on it but I have been told you adjust and become less affected.
Hugs for you all, I hope you all are feeling well.
Last edited by roxeypuppers; 09-02-2008 at 06:11 PM.