Zaps, spots, itching, cyst, flaking skin, what next?!

General General TN & GPN (Old Site)
1

Had a second flare up recently of what I believe is trigeminal neuralgia on the ride side of my face, mainly around the eyebrow but also in the temple and scalp.

Up till this morning it had been hitting me every morning for three weeks or so especially when towelling my hair but also with very light touches to the face and eyelid, or when rubbing the eye. Also when in the shower if I allow water to run over my face (pretty hard to avoid).

Mainly it is single zaps, occasionally it feels like someone has tazered me and multiple shocks in rapid succession occur for 5-10 seconds at a time. When this happens I tend to freak out and it’s had me in tears on a couple of occasions.

It’s probably only a 7-8 on the pain but it is so frustrating.

I’ve also been quite spotty, with one nasty cyst like spot on the back of my head on the unaffected side which (in a pretty unpleasant fashion) erupted and released a significant amount of puss about ten days ago. A similar angry cyst like spot has just appeared behind the same ear.

More recently things have changed somewhat:

Been away on a business trip to the USA for a week, returning on Saturday, the zaps had been less intense when away, maybe a little sun helped.

In addition to zaps of a lesser intensity I had an itching sensation in my eyebrow which lingers a lot longer than the zaps but comes and goes over the course of the day remaining fairly constant but not painful.

On return to the UK the zap intensity was back and for a couple of days I woke from my sleep at random times with the rapid fire zaps having stupidly fallen asleep on the affected side. Slept fine on the plane. Maybe the jetlag and exhaustion contributed.

The zaps have now moved to my temple and scalp instead over the last few days.

I have also now a general crawling itch over my forehead and face.

As mentioned my face has been quite spotty over these weeks and these have now started to flake and disappear, although some fresh ones have today appeared on my forehead. Where a spot was in my eyebrow the skin has gone hard and then become quite flakey revealing some reddish skin underneath. Today is the first day in at least three weeks with zero zaps so far.

Just curious if anyone else has experienced this series of events or similar? Are the spots maybe a sign of shingles? Is the itch related to the TN? Is the skin flaking unusual or maybe even an indication that I am finally seeing the back of some skin infection that may have caused all of this?

I phoned for an appointment with my GP but there is a 4 week wait time so I have to phone tomorrow for an on the day appointment, hoping I can get some real advice, last time they sent me on my way with some migraine meds…

2

I think you allergic to your meds and you need to read the side efforts leaflet. I had also had all the symptoms your experiencing and it’s annoying. Go to the pain clinic and see a consultant there’s no need to put up with it.

3

Not taking any medication here yet, the migraine tablets are to take if I get one, (not a daily), which is not a regular occurrence right now (although was in December / January).

4

So got to the GP today and confirmed diagnosis of trigeminal neuralgia…

Possibly brought on by a shingles outbreak (but unconfirmed).

Migraines and raynauds are apparently probably not connected but not sure I believe that.

For now I’ve chosen not to go onto any medication as the symptoms are not too severe right now but they would recommend anti depression or seizure medication before going anywhere near surgery.

I’ll continue to monitor it and see how much it worsens before I’m willing to go into any hardcore medications.

5

Another new and weird symptom for me the last couple of days. Extremely hot burning ear cheek and neck on the tn affected side… Doesn’t seem to affect the temple and eye area This is such a strange affliction…

6

My TN wasn’t caused by shingles, but I hope you have managed to get some help from some medication.

I hate touching my face, and when I don’t touch it, my pain is reduced… until the skin starts to flake off and I find myself wanting to itch my face. So I am going to take some extra medicine and try to wash my face today. A few weeks ago, my wife, who is a saint and my strength, got a little fed up of seeing the dead skin pile up on that side of my face. Because I never wash it, the dead skin builds and builds, and I look like I’ve just gotten that skin disease from Game of Thrones… Most people don’t seem to notice (maybe it is my permanently swollen eye that distracts them, a nice slight Quasimodo look if you will), but she and I do. I guess what I’m saying is I don’t know how to address the skin yet.

I will say that the seizure medication isn’t that hardcore (Tegretol yes, but Trileptal is basically the same thing with less side effects, and it provides great relief to some). I haven’t tried the antidepressants yet, so I can’t speak to that. If you want to know more of my current situation, continue reading. I’m long-winded so I put it after this…

I do suffer from migraines on a daily basis, and now I have reduced it to around 15 tasers/hammer and nails a day. I take 300mg of Neurontin 4x a day, 300mg of Trileptal 4x a day, 15mg of oxycodone once a day (then more if needed but I really try not to), and 7.5mg of hydrocodone once a day. I take my opioids in the morning, then I take Excedrin (acetaminophen + aspirin) basically everyday because I feel the migraine creeping on and if I get it early enough, I can contain it until I get home where I have some marijuana. It doesn’t help with the tasers, but it can knock most migraines off their feet. I live in a place where it is illegal unfortunately, so I cannot get the medicinal variety, which works for some. Just wanted to get all that out of the way. I also had a craniotomy to remove a schwannoma tumor from behind my left eye two months ago, but the tumor has permanently damaged my nerves, so my pain persists without any other obvious cause.

As for the skin, because the area around my eye is so sensitive, I NEVER touch it and never allow my wife to touch it. I don’t allow air conditioners to blow on it, no glasses, no hats, nothing. When I take my shower, my wife washes my hair first in the sink (not really a lot of bathtubs in this country), being careful not to let water touch it, and then I take a shower to wash my body, but I do not wash my face.

7

Has anyone discussed rebound migraines with you? Based on the fact you state that you have daily migraines and you’re taking a mix of pain meds on a daily basis I can’t help but wonder if you aren’t suffering from rebounds. I’ve had neurologically complicated migraines for 30 years and migraines can become self-prepetuating.

There’s also a condition called status migraine. This is when the migraine responds to medication and yet builds back up in strength as the medication wears off. Typically this status can be interupted/relieved with a course of high dose steriods.

You shouldn’t need three different kinds of pain meds every day when you’re also on a mix of daily meds, it makes me think there’s an underlying cause that needs to be explored a bit more to get you some real relief.