Symptoms Evolving, Diagnosis Progressing

What I (and the doctor) suspect to be Trigeminal Neuralgia started about 18 months ago for me.

The first episode lasted about two weeks at the end of a significant period of gradual, healthy and deliberate weight loss and having quit smoking, (it came in the form of zaps n the temple along with an increase in migraines, raynauds syndrome, dizziness and heart flutters). Curse this health kick…

This concerned me enough to visit my GP who took some bloods, some heart rate readings, gave me some migraine meds and sent me on my way. Nothing unusual showed up on any of the tests.

Remission has been lovely, no symptoms whatsoever. Last year some significant pressures came into play in my life. A house move, significant work pressure for a major project, my partner also being under work stress. No holiday or r&r to speak of was had.

In December I had a migraine (the first for some time). I had deadlines right up until Christmas with work, working UK and US hours to hit them (some looong days were pulled). Then on New years Eve, (the first relaxation day or two after family Christmas events were completed). I had a huge migraine, waking up from my usual migraine stupor to be compus mentus enough to say happy new year.

I thought nothing of this, migraines have been a part of my life since I can remember, getting maybe 2-3 a year (more when I was in my teens). Then in January I had another two migraines and February another. At this point I started getting stabbing electrical pains in my head, as well as stuttering electrical impulses any time I touched my face lightly or toweled my hair, sometimes from water running over my face in the shower.

Then another two migraines hit me. And a cyst at the back of my head that erupted rather unpleasantly. Then the spots took up residence on my face, in my temple, eyebrow, cheeks and under the eyes along with flaky skin in those areas and general tenderness. Around this time I was starting to wake from my sleep with the attacks in the middle of the night.

The last of the migraines was another big one. It was on the first days holiday I had this year - the first chance for relaxation - which also happened to be the day we were supposed to celebrate my wife’s birthday… Looks like I’m not supposed to enjoy myself then.

Into mid March and now I am getting less shocks but when they do happen they are invariably of the stuttering variety. I have also developed a reddening of the skin on the right side of my face, burning down from cheek over ear and the side of my neck. Lastly my eye is frequently tearing up and reddening. There feels like a constant tightening on that side of my face. Finally my lymph nodes behind both ears have become raised and hard.

I finally saw the doctor last week at the first opportunity (having been travelling with work the week before, and under too much pressure to visit during January or February). Medication was suggested and declined, no tests were offered. So I went back yesterday to get referred. Other possible diagnoses were discussed (Grand Cell or Temporal Arteritis anyone? Not sure but this sounds potentially worse than TN in terms of possible outcomes - not pain)! A referral letter is being written for an appointment with a neurologist. I don’t believe this to be anything other than classic type 1 TN but let’s see what the specialist has to say before I self diagnose.

I thought I was in remission having had no symptoms other than the burning heat, raised lymph nodes and slight headache for a couple of days. So I had my bath this morning and actually braved using shampoo for the first time in a couple of weeks! Heaven! No shower, just dipped my head under the water to wash it off very carefully. No zaps, this was promising!

I attempted to towel my hair and initially thought I was going to have a clear run but then the zaps hit me and my smile vanished. At least I have received authorization today from the healthcare company so just waiting on that letter. Fingers crossed I can start to get to the bottom of this now!

Wishing everyone here good health and positive outcomes.