For the past 11 months I have been dealing with facial pain on my cheek to the left side of my nose. It is constant, all day long and probably a 3-4/10. It started I believe due due to stress (I am entering medical school in July and was studying for the admissions test). At first it was every now and then and I took pseudoephedrine to make it better thinking it was a sinus infection. The sudafed was the only thing that worked and it would go away for a while after taking it for a day or two. In the past 6 months or so the pain has been every day all the time, I get slight relief from sudafed but then it stops working. I tried nasocort spray for 8 weeks with regular netipot use with no relief. CT scan came back negative except for a very slightly deviated septum to the left side but nothing significant as the ENT told me that I was referred to. Found no relief from 100mg of sumatriptan for 3 days straight so migraines were ruled out by my primary care doc. Started amitryptiline10mg for the last 4 weeks. It worked for about 3 days and then the pain came back. I was in the middle of moving from the US to Canada and so I did not have time to see a neurologist, and won’t be able to see one for a long time now.
Primary care doc in Canada now prescribed amoxicillin-clavulin and another nasal spray thinking it is the sinuses even though the CT scan was clear.
Not really sure where to go from here… The pain is negatively impacting my daily activities, making it very hard to concentrate, causing short term memory problems, and just overall annoying all day long.
I am not sure where to go from here. I am fairly certain the antibiotics aren’t going anywhere as I have no discharge or any other sinus symptoms other than my left nostril being more plugged up than the right.
Does anyone else have experience with something like this? I am wondering if I should ask for gabapentin or something similar? I really need to get this sorted out before starting medical school or I don’t know how I will make it through with this pain.
hi there,
Congratz on getting into med school and sorry to hear about your facial pain. I am in a very similar boat to you. I have low grade pain fairly consistently but i do get breaks. Also mine has a few shock sensations which made it easier to rule out sinus problems.
Anyhoo, doctors try to treat what they know. So if they have never seen the more rare facial pain problems they just go to what they have seen: sinus problems, teeth problems etc. It’s a very common type of bias in people but particular destructive when doctors operate under this rules.
When my pain started i told my best friend who is a doctor and he told me im full of crap and its my anxiety making me think that. Two MRIs clearly showed TN related signs and he still thinks im a nut lol.
Anyways enough about me bashing doctors lol.
I think the first thing to try in your case (which looks a lot like TN2) is the TCA antidepressants which you tried, but why at such a low dose? 10 mg of amitriptyline may not be sufficient. I mean you need less than that required by people taking it for depressions, but 10mg is just too low. Also the fact that you got relief for three days is a good sign. I say start taking 2 or 3 pills a day and see how it affects you.
If you give this a good try and still nothing then the next logical step is to try gabapentin or lyrica or even carbamazepine. My doctor friend actually relies on the response of the patient to an anticonvulsant as a diagnostic tool in helping him figure out if the pain is nerve related.
Hi there
Congratulations.
I am sorry this happened and now you are in Canada.Because it is always nice to be close to family and friends when crap strikes.
if you got relief from the amitryptiline I am thinking you need to increase the dose.
I don’t know where you are going to school-do they have a medical plan?Most schools in Canada do have a plan.
The latest appointment at my Toronto hospital appointment had my diagnosis as being idiopathic facial pain.
Which means sweet all to me.
It used to be TN2 or Atypical facial pain but now it is considered a HEADACHE-at least by the specialist i saw.
I think there is a world of difference between a headache and this pain.
I hope you find what works.
Could you have been studying in an awkward position?There seems to be some co-relation between posture and this facial pain.
I also have found that peppermint essential oil(around 10 bucks a bottle) and lidocaine patches(salon-pas) cut in strips and stuck on the nerve line provides a bit of relief.
Hopefully it resolves quickly for you
Best wishes
Thanks for the reply I will definitely check out the cream!
I think 10mg is the standard to start for neuropathic pain, and I was content with the dose at the time after reading a few studied and listening to a few lectures on youtube (http://europepmc.org/abstract/med/16146306) Unfortunately it looks like it takes a few months for results but I am not too keen on heavy doses of TCAs because they are anticholinergic (linked to increased dementia risk) and am already on an ssri and clonidine for anxiety. I think I am just getting impatient for both relief and a diagnosis. The amitryptiline also makes me incredibly grumpy even at 12.5mg so im afraid to even go above that.
Also I have read a lot and I might be a bit confused. Is there a difference between TN2 and pifp? I do not have any shooting pain only constant all day at a low level.
Hi Trout
BE CAREFUL OF THE CAPSAICIN creme near your eyes.
And don’t let it wash into your eyes.It will burn
Every one is probably laughing (esp. the moderators) at your last question.I have not found relief.
The amitryptiline worked-but I needed to go up to 40mg and my hands went numb.Same with all the others.
I don’t know what anti-depressant you are on-I tried cymbalta and effexor.
They both worked-but I could not take the side effects.I am on gabapentin-so maybe if you are on one of those then a mix with gabapentin would help.
It is all a crap shoot.
How would you rate your pain.
I am in pain 24/7.I drug myself to sleep-marijuana oil(yay for Canada)
I find opiates have been the thing that gives me relief-but because of the problems(reminds me of the Irish Troubles) even people who have found relief are getting them taken away.
Try the salon pas patches-cheap and easy and if you are not in excruciating pain they might do the trick.Won’t have to worry about your eyes.
And a drop of peppermint essential oil when you are out in public.
My old neurologist was retired(not by choice) and this new one I had (I dismissed that one from my practice)says that this is the new name.Idiotic facial pain.
Hi Trout,
Yes of course you have to keep the capsaicin away from your eyes and you have to handle it very carefully. The product i showed you has an applicator, so you dont have to get it on your hands when applying (as in the case with using a cream) so its safer. It will burn a lot at first but gradually will get better. Please do some reading on the use of capsaicin for nerve pain. This forum has a few threads on this. ps it might even make you worse depending on what it is that you have. But its cheap and has no serious side effects and its OTC so i think its worth looking into.
As for the TCAs, i also didnt want to take it for the anticholinergic effects. I think maybe nortriptyline will have less of an antichilinergic effect. But overall, any medication will have some side effects. And as you know, there is no free lunch in life also this dementia risk will not start to seriously effect you until old age, and who knows what will happen then (i assume youre around 25? by then they might have discovered cures to dementia and TN, or maybe by then we will all have been killed by the super intelligent robots or something lol).
I think perhaps your anxiety issue is interfering from your ability to give your medication a good chance. (i have ocd and i read and read until im paralyzed by all the worst case scenarios etc.)
Also staying on the TCA would have resolved some of the side effects after a while, i think the first two months are just adjustment periods.
Another option would be to switch your SSRI to an SNRI like cymbalta which also has an affinity for the norepinephrine transporters and might have some benefits for nerve pain. but if you read about cymbalta you will be even more terrified than when reading about TN, people who try to get off of it have a really hard time. Pristiq or effexor are also in that family but im not sure if there are any proven studies showing it has any impact on pain.
I just hope the next thing you try you end up sticking with, otherwise youll keep going round and round and not give anything a chance to really make an impact.
Also i think another aspect of your problem is the emotional one: you already have anxiety issues, youre in a new country, youre starting med school and you have to deal with this problem without even having a proper diagnosis. It can really overwhelm a person. I think you may need to stop your researching and reading online. Of course its good to learn about it but there really isnt any magic bullet out there; doctors dont really understand these conditions fully. Try to disrtact yourself or meditate and find friends and go out there and try not to think about it too much. A 3-4/10 pain shouldnt be causing you so much distress. I think your emotional state is magnifying this issue. Your fear of the unknown and your desire to understand what the hek is going on is as much of a stressor as the pain.
ps i am not saying you should stop reading, i think you should, but to a level that doesnt cause you too much stress. Doctors dont know much about these conditions, so you have to be your own advocate.
As for TN2 versus PIFP: I think (not sure) TN2 is another form of TN (blood vessel pressing on the nerve) but PIFP or Atypical Facial Pain is from an unknown source and “pain cannot be attributed to any pathological process”:
Summary
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Although not sure what this distinction means in terms of the consequences for treatment. As you can see treatment is similar to TN2:
"The treatment of choice for PIFP is tricyclic antidepressants such as amitryptiline (50–100 mg/day). Selective serotonin
and norepinephrine reuptake inhibitors (duloxetine, venlafaxine, and mirtazapine) are used as well. ":
Good luck and let me know if there is anything i can do. If you are going to one of the top med schools in Canada you might have access to some amazing neurologists. McGill i know for sure has some world renowned neurologists.
You’re getting great advice here about amitryptiline, pay close attention to it is my advice.
Moving on from that – I don’t like what your GP said about migraines. First off, the longer you go with one the harder it is to stop, they can become self-triggering even. Not everyone has success with sumatriptan so I don’t understand why that was used as a benchmark or diagnosis tool. Also, when you use that category of medication more than twice in 24 hours and/or more than twice in a week you run the risk of creating a migraine. Taking 100mg three days in a row doesn’t go with any of the suggested therapies and could have made the issues worse.
Based on your level of stress an anxiety it does tend to make sense that you’re dealing with some sort of tension/stress headache/migraine that’s being compounded by everything else going on in your life… or look it in the reverse, all the events in your life are layering together creating a stress-triggered migraine.
When you have an entrenched migraine the best treatment is a steroid step down. Same with sciatica nerve flares (drawing a parallel to facial nerve flare up). And, if you’ve been hunched over studying you could have aggravated the heck out of your neck which is reacting by creating facial pain. Steroid treatment would possibly reduce any swelling caused by repeated poor posture hunched over books or computers. This is a short term, acute treatment but it could point you in the right direction. Migraines are not just having a pounding head, they are a whole range of neurological reactions.
I would also say you need to not made medication decisions based on possible side effects. For every action there is a reaction. I don’t think you can make good decision on “what ifs” of medications. You have to make decisions based on what works for you, not based on what happened to others.
Welcome! I was first diagnosed with migraines. I too had constant sinus pain/tooth pain. And I also had migraines that starts in the back of my head. Mine was triggered by a tooth extraction. I was given nortriptyline 10 mg at first and put off taking it. I hate taking meds. I desperately took gabapentin first with little relief. I then started the nortriptyline. I worked up to 40 mg over 4 months. And up to 600 mg of gabapentin over the same time period. I found instant relief with Nortriptyline. Mine did develop into moderate stabs in my jaw. Turns out I have TN2 with a compression thanks to a special MRI. I guess I’ve been prone to this thanks to the compression. I look back now and can trace right sided headaches especially before a storm. Here’s what I found worked for me besides the medicine: yoga, proper posture, not looking down to read or use my phone, stretches that work my SCM muscles, distraction, and Botox. Good luck. The pain industry is a money making black hole. Start with alternative treatment. If they fail, by all means weigh the pros and cons of pharmaceutical drugs. You may not need to take them for life. If I continue to have good days, I may thinking of weaning myself with my doc’s schedule off of some of the meds. I’ve been on them for 1 1/2 years. Good luck in school.
One more alternative- cut sugar out of your diet and limit carbs. Bring in healthy greens and colorful fruits like anti inflammatory blueberries. Look into anti inflammatory diets. The less inflamed you are, the less pain you may feel. This worked wonders for me. By the way, I too struggle with anxiety. Type A personality. It’s a blessing and a curse. The CNSystem is very complicated.
Trout:
Great on getting into Med school! I am a frustrated doctor who should have also gone to med school. Capsaicin is the active ingredient in hot peppers. Yes, absolutely keep it out of your eyes and away from any mucus membranes. In the States ( don’t know about Canada), there is now available a 8% Capsaicin patch available by Rx marketed under the trade name “Qutenza”. Also a recent study comparing Capsaicin to Pregabalin (Lyrica in the US) on nerve pain, but not TN or GPN, showed Capsaicin was superior to Gabapentin for pain. I knew a lady, who I met at a support group in Canada not far from the US border near Buffalo, NY, who had her TN under total relief just using Capsaicin cream. I tried it for my TN but it didn’t work for me. Lots of good luck with it cream or patch and also in med school.
I tried to get the patch for my back pain about 2 years ago and it is not available.I keep thinking about it.I have made my own hot pepper cream using coconut oil and hot peppers-hottest I could get-dried pepper-hottest I could get and left it in my rice cooker a couple days.it is hotter than the creams available here but not hot enough to do anything.
I will take a trip cross border if I can drag someone with me.
Maybe I could walk across to a drug store in Niagara and just buy one.new thing to investigate.Thanks
also this dementia risk will not start to seriously effect you until old age, and who knows what will happen then (i assume youre around 25? by then they might have discovered cures to dementia and TN, or maybe by then we will all have been killed by the super intelligent robots or something lol).