Hi, I just had a strange (and depressing) thing happen to me tonight. I am in a new house and am currently redecorating it top to bottom. I had spent the day cleaning down the boards in my living room floor and was just applying knotting (it’s a kind of varnish to stop knots bleeding through your paint). It’s (assumably) a petroleum-based shellac kind of affair and it has a high nail varnish kind of scent. My back was hurting after a day’s graft so I was sitting on my bum, rather than kneeling and this meant I had the little bottle right under my nose when suddenly - BANG! - a full-blown shock followed by some after-shocks and then a generally burny twitchy mouth which is now firing up to everything (now scared to eat).
My TN has been in remission for quite a long time but has been coming back over the last 6 months, or so, so I am getting random shocks anyway and a lot of sensitivity, but that was a particularly bad one. In full disclosure, both windows were open but they’d been open all day as I worked, no wind had sprung up and I was sitting at the opposite side of the room so they seem very unlikely as the culprit. I was talking to myself (what can I say? I’m newly ‘divorced’ - I talk to myself) but again, I do that all day too, without any problems. I was very much aware when I sat down that I got a full snort of varnish and it seemed to just trigger it immediately.
It is possible that it was some kind of vapour reaction thing. Obviously the smell is carried on a volatile vapour so possibly rather than being the scent there was some nasal temperature change or something? If there are any scientists among you, you might be able to enlighten me on that. Otherwise, I’d say it was triggered by the strong scent, or the type of scent - a strong chemical.
Anyone else experienced anything like this? If so, is it anything in particular that triggers it, and is it possible it’s actually a chemical ‘reaction’? Or is it just plain old smells? I know there is a connection between migraine and TN, and I am a migraine sufferer, and as I’ve aged that has got worse. So much so that if I sit beside anyone on a bus wearing strong scent I invariably end up with a splitting headache. I have actually moved seats to get away from scents, it’s so severe at times. If my TN has morphed to now react to scents too, life is going to become a nightmare. Any insights most gratefully received.
I don’t know about “official” trigger by smell but I do know sometimes my sense of smell is oddly acute when I have a TN2 flare. And smell can trigger migraine s and migraines can involve the trigeminal nerve so at the end of the day it makes sense for scent to trigger.
Yes, it looks like I’m in a minority of one, but I am 98% sure it was triggered by the smell - whether it was actually because of the vapour being kind of ‘mentholated’ (I can’t think of the right word for that high evaporatey sort of thing petroleum based chemicals do!) or just the scent, I don’t know, but it was very real. Ah well, that’s the obscure benefit of having a rare disease like TN - you get to have really weird special powers like electric shocks from smelling things!
Well, we’ll just cross our fingers and hope that it was a trigger that happened with odds of it happening again at 99.9999% ! Next time you think about doing a back-breaking job like prepping woodwork use the remote possibility of a trigger as an excuse to hire someone to do it! laughter I hope your home improvement/painting job turns out lovely.
I like the way you think, Azurelle. It never even occurred to me to use it as a get-out-of-jail-free card. Thank you for that inspiration; there has to be some compensation for this lousy disease!
You say “I have” - are you triggered by smells then, Jean-Marie?
And I’m not sure what you mean by the micro-seizure thing. This was a real smell that triggered the attack; it wasn’t like a migraine ‘hallucination’ that you might get with seizures. I know that people often get olfactory hallucinations before a migraine comes on, when they imagine they can smell things. It wasn’t like that. I sat down, had a snort of knotting fluid and got an immediate shock.
Sorry, too much medicine makes me sloppy at writing.
Yes, at dinner when Zi sit down the smell or first taste can work as a trigger for a zap.
I was worried you might be getting hallucinations. Glad you are not. As for why we do this ai imagine we are on alert with all our senses to an attack of pain and our nerves never really calm.
I wonder if going to a rehab institute for pain management would help us with this. What do you think?
Jean
Oh, I know the over-medicated stupidity syndrome well, Jean-Marie! I’ve always had the taste trigger thing with sweet, but with this recent return of the condition that’s not nearly as bad, I’m pleased to say. I should be thankful for small mercies, however if I’ve just replaced sweet taste with chemical smells, maybe not so great!
I got it again this morning, potentially, from oil-based paint. Only time will tell if this is going to be a real thing.
I can tell you beyond a doubt that my migraines are triggered by oil-based paints and varnishes, so much so that I don’t even consider using them (even if a pro does the painting for me!) in my house or on my property. The fumes bother me for days and days. I think it’s reasonable that you’ve found this unfortunately connection, especially now that it’s happened twice. YUCK. I would say open your house up, run fans to clear the fumes, and get rid of all the oil based stuff you have.
I’m with you on the oil-based headache issue, Azurelle. I’m ‘lucky’ though because they just give me a headache (just - you can tell a migraine sufferer a mile away; they talk about ‘just’ having headaches!) I throw open all the windows and suck it up (literally). I make this sacrifice because I hate water-based paints. They’re just not as tough and resilient. My migraine scent trigger is perfume. I used to love going into Lush and now just being downwind of it in the street puts me off. Ah, that trigeminal nerve is a strange little pirate!
Just curious…but how long have you been in remission and are you on any meds?
I have been in remission almost 2 years thanks to trileptal. ( I assume it is the drug that stopped the shocks; haven’t stopped the meds to find out though)
Sorry you are triggered by scents. At least it should not be too hard to avoid oil based paints because just about all paints are available in latex form now.
Also the term you are looking for regarding petroleum chemicals is “volatiles” Meaning they evaporate at relatively low temperature.
That’s interesting, haach, but it could be the suction, or touching your face, pursing your lips, or just the act of putting something in your mouth rather than the smoke itself, I’m thinking?
Hi Tom, I’m really crap with dates, but I know I’ve definitely been in remission for well over a year, maybe closer to two? You say you’ve been in remission for almost 2 years but you’re still taking the meds? Why??? Are you still getting some underlying pain or the odd shock, or have you just never risked it?
In my opinion, you should try and see if you can lower/lose the drug altogether simply because they’re nasty drugs and take a toll on your body. Even if you’re one of the lucky ones with minimal side effects they’ll still be impacting somewhere, like on your white blood cell count.
I got drug-induced-lupus from Carbamazepine (I think I was on it around 14 months?), but it was slow and surreptitious so it was never diagnosed as such. Plus my doctor didn’t give a damn; he just doled me out anti-allergens (I came out in an allergic rash). I will undoubtedly need to go back on drugs very soon as I’m getting shocks every day now, but as yet not anything like my first ‘attack’, when they were constant. I’m going to try some different non anti-convulsant drugs first, if I can, to see if they help. I’m thinking Amitriptyline and maybe Baclofen. Just going to put to post up and ask for some advice on it, in fact.
And yes, I did wonder if maybe the issue isn’t scent but the volatile gases (are they gases?; I assume so!) from the chemicals rather than the scent itself. Let’s hope so!
Sorry, Tom, me again, forgot to say, no, I’m not on any meds. I talked my doc into giving me B12 injections and they turned it around for me, acting almost immediately. Unfortunately, by a weird coincidence, I went to a new doc today and they just cut me off - this after I’ve been having them for well over a year (like I say, maybe longer, my crap memory!)
I, of course, to make a bad situation worse, promptly burst into tears. It was just sheer frustration and impotent rage. I can’t understand why they are making such a fuss over a monthly B12 injection. They would rather I went back on anti-convulsants - a much more dangerous drug; what’s the logic in that? That said, however, I am going to have to take some drugs sooner or later so maybe it no longer matters whether they give me the B12 or not. I just find it deeply offensive that I’m stuck on my own with this pain and distress while they refuse me simple B12 because there isn’t a protocol for it. I know I shouldn’t generalise but I loathe doctors.
of course that is what i thought first, so i tried to recreate every aspect of smoking, from pursing the lips to sucking in air to anything else i could think of. It only works with smoking. And i have ATN so i shouldnt really have any triggers, but i do and it is a strange one!
Oh trust me, Azurelle, they’re on strictly borrowed time. I have an appointment with one of them tomorrow and I’ll see if I can sort this BS out, but if they give me any grief I’m walking. If I’m just going to be stuck back onto anti-convulsants then it doesn’t matter what doctor I see so I’m binning this lot!