TN Triggers

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Permalink Reply by Jo on March 9, 2010 at 12:36am

Hi Rennee,

I have some of the usual triggers, like the wind blowing on my face, talking and eating.

But, like you I also find loud noises a trigger. We had a mezzanine floor put in at work yesterday and they were using a very loud drill. This was causing me major zaps at times. I have been up most of the night thanks to that.

Also, if my dog barks this can cause a zap, though I'm not sure if this is because of the actual bark, or me jumping.

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Permalink Reply by Rennee DeTullio on March 9, 2010 at 12:56am

Thanks for your response, Jo! I have a lot of triggers like talking, chewing, smiling, laughing, yelling, wind, whistling, weather changes, etc. Oh, and STRESS! Exercise is difficult because any time my heart gets pumping really good, I get the pains.
It just seemed like most of what I find out there are the basics. But, I know I get some odd triggers and thought I would see if there are others like me. Thanks again for responding! I wish you a pain free day tomorrow!

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Permalink Reply by Liz K. on March 9, 2010 at 5:12am

Hi Rennee,

My triggers include being really tired, talking, eating, laughing, wind and weather changes and migraines. All of those are triggers when I am having a lot of trouble. When I'm pretty much controlled, migraines and eating are the primary triggers. I'm sorry you are having pain.
Liz K.

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Permalink Reply by Melodye Olsavsky on March 9, 2010 at 1:41pm

My triggers seem to have no rhyme or reason to them. The one I notice the most is noise. I am a musician and have trouble at band practice ~~ and I usually get worse as the night progresses. Sometimes brushing my teeth is a problem, but not always! At times when I exercise, I get pain. I have modified my exercise routine ~~ an elliptical and pilates machine, just to keep my head fairly stable. Fatigue makes it worse, but doesn't seem to cause it. Talking sometimes creates pain.

Wow, I guess I have many and various triggers. Best wishes as you work through this!

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Permalink Reply by Suzanne Marriott on March 13, 2010 at 5:42pm

I can really relate to Pat's description of the "nail in the tooth" sensation. The pain feels like somebody's jabbing a raggedy nail up through an upper molar, then twisting it... and sometimes, just for fun, hooking the nail up to a car battery OWWWW!
I have the usual triggers everyone has mentioned; putting on make-up, cold wind, sharp noises, etc. I also have trouble wearing sunglasses (or any glasses) if the nosepiece touches the inside right of my nose. Changes in altitude are a problem. I don't get on a plane often, but I live on the side of a mountain. The nearest town is in the valley below which is a 2000 feet descent. Going down the mountain isn't a problem, but coming back up often triggers the pain (weird!). I think it has to do with air pressure... it gets lower as I go up. Also, low pressure weather systems trigger multiple attacks and make life miserable. Luckily, I live in Southern California where the weather is nice most of the time.
I also get nasty migraines that can last up to 3 days. I've noticed many of us also suffer from migraine, doesn't it seem to be related somehow? My migraines were few and far between before I acquired this affliction, and never as bad as they get now. They are also triggered by bad weather, and stress. As the mother of a teenage son who is in full rebellion mode, I have stress a-plenty!
Suzanne M.

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Permalink Reply by Mary Russell on January 12, 2011 at 2:39pm

Cordless telephone triggers mine.

Mary

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Permalink Reply by Pat Gascoigne on January 13, 2011 at 1:43pm

Apart fromthe usual talking and eating, my worst episode was when I got very cold and my teeth started chattering. I also could not sit on a soft seat for long without an attack [I've not heard anyone else report anything similar]. Thankfully this has gone away now that I can find, and de-activate, trigger points in my neck.

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Permalink Reply by Anne on April 5, 2011 at 11:53am

Hi Pat,

I have just tested my theory that sitting on soft seats at home is causing my TN. For one whole day I sat on kitchen chairs, the coffee table, the floor - anywhere but the armchairs and sofas - and the next day - no pain at all. What made me suspect this is that I developed TN about 3 weeks after we bought 2 new suites of furniture and I just spent the whole month of March in hospital because of an allergic reaction to Tegretol. I had 3 admissions in that month with one day at home in between each time. I did not have a single twinge while I was in hospital but every time i came home for a day it returned immediately. So I tried to figure what is different about home and the new furniture came to mind. My GP says she thinks it's more likely to be an allergic reaction to the fire retardant on the new furniture but I can't find anything in print linking TN to an allergic reaction. I still think it's the soft seating. 

Pat Gascoigne said:

Apart fromthe usual talking and eating, my worst episode was when I got very cold and my teeth started chattering. I also could not sit on a soft seat for long without an attack [I've not heard anyone else report anything similar]. Thankfully this has gone away now that I can find, and de-activate, trigger points in my neck.

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Permalink Reply by Pat Gascoigne on April 5, 2011 at 1:48pm

Hi Anne, I was so sorry to learn of your problems but I was pleased to hear you confirm the issue with seating. I'm certain that you're right and that the fire retardant would not have caused TN. Allergies to retardant have been reported in the press as skin conditions similar to burns.

Yesterday I took my husband to look at new sofas, specifically ones with very firm cushions. I still find that following a bad experience at the dentist, unless I sit on an extra cushion, or lie propped up at a 45 degree angle, my jaw is worse.

I have a book on TMJ which lists "sitting in poorly designed chairs" as a cause of TMJ. It goes on to say that sitting and relaxing can cause the neck muscles to become unsupported and the head protrudes. This can cause the fascia [connective tissue] to malfunction and bind down tightly causing  abnormal pressure on nerves and muscles. I'm trying to improve my posture with exercises and things such as hand weights but it's a slow job.

You had a really tough time during March. I do hope that you can find a medication which suits you. It's exhausting not being able to relax in chairs though at my worst I spent hours in the kitchen baking cakes etc just to keep on my feet. At least we have a refuge in bed.  Pat x

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Permalink Reply by Kristi Boyer on April 5, 2011 at 2:13pm

My triggers are weather changes (which seem to be simply barometric changes - esp ones that are extreme) and cold weather. I've been miserable all winter. Went to Florida for a week. It was 80 and sunshine. NO PAIN the entire time. I know that summer there would be horrible, but next winter, I'm headed south if possible. I also have teeth triggers, especially electric toothbrush (which I just avoid) and dental work (been tying to avoid for two years until tomorrow). Flossing almost always sets off zaps, so i do it only once or twice a month and after I take my trilepital.
SO I always stay out of rain storms with my floss and electric toothbrush! :)

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Permalink Reply by Anne on April 5, 2011 at 4:58pm

Pat, what are the trigger points in the neck and how did you find them?

Jackie, I too find that bending over can trigger it but a facial pain specialist and a neuro-surgeon both dismissed this.

I'm so glad I found this forum. It's great to hear other people confirm my experiences that very specialised doctors are dismissing.

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Permalink Reply by Karen Brown on April 6, 2011 at 7:13am

Kristi Boyer said:

My triggers are weather changes (which seem to be simply barometric changes - esp ones that are extreme) and cold weather. I've been miserable all winter. Went to Florida for a week. It was 80 and sunshine. NO PAIN the entire time. I know that summer there would be horrible, but next winter, I'm headed south if possible. I also have teeth triggers, especially electric toothbrush (which I just avoid) and dental work (been tying to avoid for two years until tomorrow). Flossing almost always sets off zaps, so i do it only once or twice a month and after I take my trilepital.
SO I always stay out of rain storms with my floss and electric toothbrush! :)

Kristi, I'm convinced that extreme  barometric pressure changes trigger my attacks but instead of winter being a  problem for me, it's summer.  I live in a very hot and humid climate and my older car has no air conditioning.  I suffered terribly last summer (was out of commission for much of June, July and started to get better in August). 

Bending over doesn't trigger an attack for me but if I'm already in pain, bending over increases the level of pain immediately. 

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