Hi 
I’m new to this community but just by reading older posts I’ve learned so much about TN! I’m also new to the diagnosis so I have a few questions.
First, I suppose I’ll tell you my story! About four or five months ago I had constant migraine-intense headaches. I thought my birth control was messing up, so I changed to an estrogen free shot, but with no relief from my head. I began to notice around three months ago that my cheeks felt like I had been smiling all day. I thought nothing of it until I began to have intense ear pain. It felt like someone was jabbing a pen into my ear. I had it in both ears but never at the same time; and also more on the left side. I then began to get electric shocks that would pulsate through the left side of my face and send me to my knees. After a misdiagnoses of TMJ, my Neuro said I had TN. I’m taking 400 Mgs of Gabapentin and Loratabs for pain-which I nearly refuse to take.
I have a few questions: I’m only 18 (and ive only been 18 for two weeks!) and I’m incredibly academic. I’ve read that the medicines make you foggy and forgetful, is this true in every case?
Also, today I began getting shooting pain on the OTHER side of my face. Its a stabbing in my ear that runs directly to my tongue. Is this normal?
Thank you so much y’all
There's nothing "normal" about neuropathic facial pain, I'm afraid. And no two patients experience exactly the same pain or drug side-effects. That said, many patients do report problems with brain fog and short term memory issues with the anti-convulsant drugs used in Atypical TN. For a lot of folks, some of the effects seem to acclimate (the body adjusts) over periods of a few weeks.
FYI: the dose level that you quote for Gabapentin -- if it is a daily dose -- is on the very low side. I have spoken with patients taking up to 3600 mg per day of that med. Some can't tolerate high doses because of unacceptable side effects. Others like my spouse seem to do pretty well with minimum side effects. Nobody knows what distinguishes the two classes of patients.
One other FYI: The sharp, stabbing pain in your ear might be a presenting symptom for a specific form of facial neuropathic pain called "geniculate neuralgia" or "nervus intermedius neuralgia". The medication treatments for that form are much the same as for classic TN with its lightning stabs in the cheek, jaw, forehead, or behind the eye. Likewise, though it is not as common as single-sided pain, quite a number of patients have pain on both sides, often of somewhat different character on the two sides, just as you have.
For additional information on facial neuropathic pain, I suggest that you open and read the "Help With Research" tab on the menu above. Two other moderators assisted me in preparing that page as a sort of encyclopedia of face pain for new patients and old. Feel free to come back with other questions.
Go in Peace and Power,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Thanks for your help! My dosage is low because I started taking medicine four days ago. I still have pain so I imagine I’ll have to up my dose.
And im really nervous that my school is going to suffer because of my medication.
Also, I get pains in my neck directly below my jaw bone and close to my ear. Is that common?
Richard A. “Red” Lawhern said:
There’s nothing “normal” about neuropathic facial pain, I’m afraid. And no two patients experience exactly the same pain or drug side-effects. That said, many patients do report problems with brain fog and short term memory issues with the anti-convulsant drugs used in Atypical TN. For a lot of folks, some of the effects seem to acclimate (the body adjusts) over periods of a few weeks.
FYI: the dose level that you quote for Gabapentin – if it is a daily dose – is on the very low side. I have spoken with patients taking up to 3600 mg per day of that med. Some can’t tolerate high doses because of unacceptable side effects. Others like my spouse seem to do pretty well with minimum side effects. Nobody knows what distinguishes the two classes of patients.
One other FYI: The sharp, stabbing pain in your ear might be a presenting symptom for a specific form of facial neuropathic pain called “geniculate neuralgia” or “nervus intermedius neuralgia”. The medication treatments for that form are much the same as for classic TN with its lightning stabs in the cheek, jaw, forehead, or behind the eye. Likewise, though it is not as common as single-sided pain, quite a number of patients have pain on both sides, often of somewhat different character on the two sides, just as you have.
For additional information on facial neuropathic pain, I suggest that you open and read the “Help With Research” tab on the menu above. Two other moderators assisted me in preparing that page as a sort of encyclopedia of face pain for new patients and old. Feel free to come back with other questions.
Go in Peace and Power,
R.A. “Red” Lawhern, Ph.D.
Resident Research Analyst, LwTN
Pain along the jaw line and under the ear can be caused by what is called "vaso-glossopharyngeal neuralgia". Same process, different nerve. Unless you've got clicking in your jaw joint, I doubt that you are dealing with tempro-mandibular joint disorder. But only a licensed oro-facial pain specialist can tell you with any authority.
When your gabapentin was prescribed, your doctor should have given you a schedule for tapering up to an effective dose level. If that didn't happen, then call their office tomorrow and ask what your titration schedule is supposed to be.
As for school: it's a one day at a time deal, Hon. You might not experience the same side effects as somebody else would with exactly the same symptoms. My wife was able to work as assistant comptroller in a wholesale mortgage company, while taking 2800 mg of gabapentin per day. She had word finding difficulties sometimes, but was able to function quite effectively in a very fast-paced business. Not everybody does that well, but at least there are some examples of people who do.
Regards,
Red
Yeah, she didn't give me a schedule for it yet. I'm supposed to go back and see her in a week or so, but I'm going to call her office tomorrow and see what I can do.
So is TN an umbrella term for nerve caused face-pain, or are all of the things you listed more specific nerves that I might have issues with? Are they all caused by the same issue or are there multiple things wrong?
Thank you so much for all of your time and patience answering my questions :)
No worries, Anna. However, as I mentioned before, "for additional information on facial neuropathic pain, I suggest that you open and read the "Help With Research" tab on the menu above. Two other moderators assisted me in preparing that page as a sort of encyclopedia of face pain for new patients and old. "
The umbrella term most often used these days is "facial neuropathic pain". It is becoming recognized that the distinction between "neuralgia" (an inflammatory process) and "neuropathy" (mechanical damage to a nerve) is often somewhat artificial. Terms like glossopharyngeal versus trigeminal, refer to the specific nerves affected. It is also recognized that more than one mechanism or cause can be operating in face pain, with many overlaps in symptoms between these mechanisms. Typical TN, for instance, is frequently associated with compressions of the 5th cranial nerve by small arteries or veins in the vicinity of the emergence of the nerve from the brain stem. Atypical TN which presents with more constant, throbbing, burning, boring pain is not as often treatable by removing such compressions in surgery. Face pain can also occur because of generalized Neuritis -- a distributed inflammation of long stretches of the nerve. There are a lot of other possible causes. You can read up on them in the Help with Research tab.
FYI on the titration schedule: I've heard a lot of patients relate that dose levels tend to be increased a week at a time by their doctors. So don't be too surprised if your doc advises you not to taper up until next week.
Go in Peace and Power
Red
Jackie is both correct and gracious. I might add that she probably knows as much about TN as I do, though she doesn't write at as great a length. I'm a wordy cuss.
Like any other anti-seizure medication, dose rates for Gabapentin must be gradually tapered up or down, because of its powerful effects in the nervous system. Quitting higher doses without tapering down gradually can actually cause seizures in some people. So go with the titration schedule that your doctor recommends, in either direction, Voodoo.
And somebody tell me please why "Voodoo Ritual"???? That one has me puzzled... {:-)
Regards, Red
Well I'm glad to see Red has answered a lot of questions regarding your diagnosis and meds. I am worried about your acedemic stress (ok - I'm a mom of 16 & 17 year old overachieving girls).
1. Stress will trigger any illness to worsen
2. In the end, your health has to come first.
You sound like a smart cookie. I would advise keeping yourself organized. Sounds simple, but lots of healthy people have a hard time with this. If you can do this - it will help even on your foggiest days. You will retain what you learn - it will just be memory recall that may be a problem, if you have any at all.
Memory Recall may create a problem for you in timed or verbal tests. My suggestion is to talk to your professors. Let them know what is going on and if it does create a problem, see if alternative testing is available. Personally I can't verbalize, but I can recall if I am writing (I know - very strange).
Fatigue may also be a problem. Don't get overwhelmed. Know when it is time to lighten your courseload. It is far better to attend school with a 75-80% courseload than to drop completely. Again, talk to your admissions / course councillor to see what your options are. Talk to your parents.
If you want to succeed you should be able to. You just might have to re-adjust and get there by a different path than the one you set out on. Be ready for that. Keep your mind open and you will be OK.
And think positive! I am discussing worst case here. Your body might agree and adjust quickly to whatever your Doctor prescribes and this won't be worth talking about.
I hope this helps ease your mind a bit.
Elaine
Not all the meds make you foggy, but it is a common side effect. Many people get used to it after they've been taking the meds for a while. But the pain will make you foggy too, so just take the meds you're prescribed and try and do the best you can.
I'm so sorry to hear you're diagnosed at such a young age. Breaks my heart. But hang in there, many people are able to manage their pain with meds.
Thanks Elaine! That is such a practical approach to it. I just have terrible anxiety anyways so I kind of got flustered for a minute thinking about handling everything. I'm sure if I take it day by day I can handle anything :)
And Crystalv, thank you! My mom and I were talking about looking into surgeries to see if maybe that would be a better road for me to take, but I'm still iffy about the whole thing. I just feel like there aren't enough choices for me to decide from!
I think the hardest thing about being 18 with chronic pain is the lack of understanding from my peers. I'm too afraid to go out as much simply because I'd hate to have an episode in a strange place with strange people. I just wish I could go out and enjoy music and bars and parties like every normal college kid! But then again, I was never too into partying, so I guess it's not that big of a deal.
I know what you are saying about focusing on academics. I'm in a residency program right now which requires regular work hours plus education. Like you, i'm just beginning my meds and am having major "brain fog". Yesterday I talked with my neurologist about it and we are going to hopefully find a regimen that helps me focus, as that is essential to my life right now!
I agree that working on stress and anxiety is essential to your pain control. These are such triggers for me as well, which is why i'm taking an anti-depressant, seeing a therapist, and working on breathing and mindfulness techniques to help myself stay as calm and relaxed as I can. The unfortunate problem is that as we all know, stress makes the pain worse and pain makes the stress worse...aahhh!!! It is a balancing process that requires some major skill.
I hope your side effects calm down soon and you are able to get the right dosage to control your pain. I know sometimes I wonder, would it be better to be in pain or in this fog where you can't function? Tough questions...