October is dedicated as Facial Pain Awareness Month –
Oct. 7. as Trigeminal Neuralgia Awareness Day and Oct. 25. as Occipital Neuralgia Awareness Day. Jun. 29. is Chronic Migraine Awareness Day and November will be TMJ (temporomandibular joint) Awareness Month.
What does any of this have to do with you – Or rather with me?
Well, apparently all of these very complicated things with awkward names can exist in one person – namely me (and quite a few other people around the world)
I know what you’re thinking –
‘This Is not October!’
Well in October I was not doing all that well so for me December will have to do.
But I suppose you’re also thinking –
‘This has nothing to do with books!’
Well, it could if you’re an avid fan of the FPA’s (Facial Pain Association) new book “Facial Pain: A 21st Century Guide” –
Which to tell you the truth I, for one, am definitely going to be checking out –
But let’s get back to the awkward sounding names – Trigeminal Neuralgia (TN) and Occipital Neuralgia (ON) and Chronic Migraine (CM) and TMD (Temporomandibular Joint Dysfunction) – Yep it is a freaking mouthful or rather face full or maybe head full – whichever it is, what it means is PAIN – Some of the worst, most debilitating pain that a person can ever experience.
Living with these conditions has been one of the worst ordeals of my life and I felt the need to share my story, especially given the timing as I have been suffering under the combined weight of these issues – unable to wrestle back control of my life from them and achieve pain relief – for the better part of two years.
TN and TMD are both facial pain disorders but of different types, TMD relates to (TMJ) joint and muscle pain at the jaw while TN relates to nerve pain (the trigeminal nerve) that spans not only the lower jaw (mandibular branch) and upper jaw (the maxillary branch) but also the upper face (the ophthalmic branch)
ON is a chronic pain disorder usually seen as a chronic headache disorder. It is a “distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. Some individuals will also experience pain in the scalp, forehead, and behind the eyes. Their scalp may also be tender to the touch, and their eyes especially sensitive to light.”
Discussing TN, ON and More With a Warrior in the Know…
Q: Do you have Constant atypical facial pain? Like pain never leaves (unless medicated?) If so, can you tell me what your pain levels normally are for the most part?
A: I do when I’m in the midst of a bad flare. The last one went on for 18 mths. I tried everything, Botox, nerve blocks, lots of different med combos. My pain level without meds: 13 on a 1-10 scale. Even on meds if I was in a high stress or stimulus environment for too long the pain triggered past meds and I would have to go to emergency for Morphine and Blood Pressure management. High pain levels for such a long time triggered severe hypertension.
It took a lot of meds and about a year of them and many visits for emergency nerve blocks and morphine shots, but I am down to one dose meds every two days of what used to be a three times a day dose. But every two days at max keeps the pain at bay once I don’t encounter triggers.
Q: You had the flare constantly, like non-stop? And where was the pain?
A: Yes it was non-stop and my TN (Trigeminal Neuralgia) is usually mostly mandibular branch. Temple and Jaw.
But the TN flare started there and then my ON (Occipital Neuralgia) started and soon I had Supra Orbital nerve issues and TMJ (Temporomandibular Joint) dysfunction occuring as well.
It felt honestly like my entire head for a long time and I was having chronic migraines at the same time so the pressure was unreal. The light and sound sensitivity had me closeted by myself for about 6 months outside of Doctor visits. I barely could handle talking to anyone, could not even tolerate TV and definitely no phone calls – it hurt to talk for long and to listen.
Q: The meds that they started you on, were they all at the same time?
A: There were a variety of treatments. The first was Gabapentin and Tegretol with Nerve Blocks. When the blocks were not lasting more than a month or so I tried Botox but they switched me to Tegretol and Mydocalm, with oral steroids as well as various OTC pain killers for a while only things got worse then so I was switched a combination of Gabapentin and Baclofen and Alprazolam. The Gabapentin and Baclofen was at the same time but when was still having ear pain they added the Alprazolam and it all finally resolved. But here and there I still had nerve blocks and Morphine shots. I haven’t had head related nerve blocks for about 3 or 4 months and the last was TMJ related. TN was like 6 months ago and I had been able to transition to using Tramacet with Gravol for added pain management now instead of the Morphine when pain breaks through meds between dose times over the last 2-3 months
It takes time to get the right treatment and find the right doctor who can work with you. No two people are alike and I can honestly attest that no two flares are alike and what worked before may not be what works the next time. When I had my first flare I was 16. Tegretol or Trileptal and one or two nerve blocks was enough. In my 20s they added Gabapentin. Then I used Lyrica for a while. And when we tried my old doses of Tegretol and Gabapentin this time in the beginning it didn’t work. And Tegretol at it highest daily doses wasn’t enough. But triple my previous daily Gabapentin dose with Baclofen and Alprazolam worked for me this time around.
Q: When did your flare break?
A: I would say around December last year. With the help of the new medication regimen which I am still currently on. It took about two – three months of the meds at high doses plus nerve blocks here and there and morphine shots a couple times a week. But I finally got to the point where it was just meds for the most part around December/ early January.
I spent another six months on the high doses before I felt okay to step down a little.
Q: Why did you stop taking the meds every day?
A: I didn’t need them at high doses as my pain levels improved. I went from high doses three times a day to twice a day and then once a day and then every other day. It’s been about 6 months stepping down. The heavy doses are a lot and keep me drowsy so I can’t do much. Also prolonged use eventually does affect kidneys. At high doses for the first few months I would do monthly Renal Function Testing for the Doctor to monitor.
Every two days works for me so I can start back to so things again. I was able to do a new cake decorating project over a couple days unhampered by the effects of the meds but still pain free. I am able to drive on my own with my reflexes not dulled by daily medication. I am able to manage things in my life without memory gaps or confusion.d
Q: It must have been a really hard two years. Thank you for sharing.
A: I am happy to share in the hope that it helps somehow. And it has been a difficult two years and a few months from start to now but I’m optimistic about the future. My flare started in September 2019. I was actually just getting out of a period of clinical depression that I’d been on for a year or so prior. I’ve been ill and unable to get back to my life since June 2018.
Q: Did you ever think it was going to end?
A: Honestly. A year ago I did not think so at all. I remember asking my pain specialist if she honestly thought I would ever get back to myself to who I was before and she held my hand and told me not to give up hope – that I could. I wanted to hope but at the time I didn’t really believe it would get much better than where I was at by the end of December 2020.