Can anyone offer me any advice when I I’m having a bad electric shock type pain attack ? I get so scared I cry loads and I think that’s making it worse ? Any advise at all will be useful ? What do you do when it happens ? I was at work just and it was that bad I had to be taken home 
in much a mess , when it happens I just keep thinking its not going to stop or what if it doesn’t stop ? Then I get myself into a right mess xxx
Sorry everyone I know the above might not make much sense but I’m typing this whilst in pain xxx
Have you asked your doctor to call in lidocaine patches for your face? Instant relief for most - for up to 12 hours
There is also a clear cream ointment but not as strong
You can call your regular doc or your neuro and have them call it in today for you - should Not Need Appt. for this.....
That's my biggest emergency pain relief
If you need to go to the emergency room --- dillaudid narcotic may work for a few hours -- but so they don't think you are a drug seeker - print off and fill out this form
http://www.lawhern.org/AttendingPhysicianAdvisory.doc
Let us know how it goes!
I did ask my doctor about the patches but they said this is something that the neuro should prescribe not a doctor!? And I’m still on a waiting list for the neuro
The thing that helps the most for me with electric shock pains is to close my eyes and breathe deeply while it is happening. I don't talk or anything. And I actually learned not to cry once I started just breathing through it. Sometimes I double up my fists too, LOL. But that is what helps me the most. ((((((((hugs))))))) and good luck. Let me know if that helps you.
Thanks Donna how long does your last? As I get so scared it won’t end every time xx
When I have pain I breathe deep, keep quiet and try to keep my mind quiet. The pain will go away and I find that the calmer I am the better I can handle it.
Some have success with heating pad or a warm cloth - deep breathing
Thanks so much everyone at last it’s just settled down that was a good 3hours of pain though on and off in the end I did sit quietly with a hot water bottle on my face and I’m sure you are all right about staying calm which is so hard to do bit I suppose I will get used to it after a while I have only had this horrible thing for a month now and I won’t let it ruin my life !! Don’t know how I will cope at work though as I work full time and I’m a mummy too , how do you all cope with working and dealing with TN ? Xxxx
Gemma, before I got on meds, I was having up to 200 episodes of electric shocks per day. Some of them lasted 30-60 seconds......so it was a LOT for me. I think that is how I learned how to handle it. Now as far as working and dealing with a child, that part is not so easy, especially if you have to talk to customers, etc... Sometimes I would just talk through the shocks, but sometimes I just had to close my eyes and breathe. If I was on the phone, I would just shut up, hang up the phone and when they called back I would tell them that I am sorry, we must have gotten cut off, LOLOLOL! And God was good enough that I could at least talk quietly to my grandson and communicate with him that way.
Gemma,
The advice about riding it out whilst using controlled breathing is the method I use for that as well. Much like with a migraine, from what friends have told me, it is helpful to remove yourself from sensory events that might elevate things further until it subsides. I have a room in my house that I keep dimmed, with a leather couch where I can just go cover up with a blanket and just shut out most of the world until a major event subsides. It is tough being at work when it happens, or out anywhere.
I was a High School teacher last year when I was experiencing this for the first time and I tried to fight my way though it, but I missed 35 days of work due to pain events, hospital stays, and doctor visits. The key word, and I wish I could be as tough as some and push through, is "was". I resigned from that position last August. I am not sure how people hold down typical full-time work when their TN is very active. I did, as I refused to do nothing, start an online business (a hobby business) that makes some money to help us out though not nearly as much as my teaching job brought in. Hopefully it will be more successful as I keep working at it. Depending on what you do, however, the reality is that you may have to re-tool your existence a bit to fit around your TN. Best thing you can do is try to learn which triggers set yours off over time and try to control those elements. Fluorescent lights really mess with me, for example, even with special lenses I can only be in fluorescent light for 35 to 40 minutes before I am in major trouble. This makes it really difficult for me to do anything that would keep me under those kinds of lighting situations all the time. The longer I expose myself to them, the longer the pain (usually burning these days) lasts after. Cold wind triggers mine as well. Basically, 40 degrees F or lower..so I have to me mindful of it. I am really good about bundling up these days and finding ways (creative wardrobe choices) to keep the wind off my face and right side of my head when it's cold. All things you'll pick up on with time. Folks with TN can absolutely still enjoy life, but depending on what you find out when you see your neuro eventually and what medicine therapies work for you...you will have to become the master of your existence. I mean that to be positive, I hope it does not sound otherwise.
In the meantime, you might try to get your GP to prescribe Indomethacin. As with all things, talk to them about it and discuss the benefits and possible side effects. It is an old NSAID that has been found to help with neuropathic pain whereas other ones of the class are primarily anti-inflammatory therapies which do not really do that much for TN as it is not an inflammatory disorder. Indocin, or Indomethacin (generic name) helps me. Might work for you too. Here where I live it costs $4 for a month's supply without insurance as well.
Hope the pain gives you the rest of the day off.
Fred
The quieter I am the better, no talking..I barely can anyhow. Dark or almost dark room, large heating pad tented over face and ear on high. Just try to breath through it. The last big flare of ear and face pain hit me a couple of weeks ago, lasted 1 1/4 hours with respites inbtween where it just ached and I waited to see if it was over each time. Took all my meds, anything extra that I could and after it all kicked in, went to bed.
Well said Fred. “Master of your own existence”
Yes, find what works and bundle up.
And thanks for the tip on Indomethacin. Tramadol is bankrupting me!
aCuppaCoffee said:
Gemma,
The advice about riding it out whilst using controlled breathing is the method I use for that as well. Much like with a migraine, from what friends have told me, it is helpful to remove yourself from sensory events that might elevate things further until it subsides. I have a room in my house that I keep dimmed, with a leather couch where I can just go cover up with a blanket and just shut out most of the world until a major event subsides. It is tough being at work when it happens, or out anywhere.
I was a High School teacher last year when I was experiencing this for the first time and I tried to fight my way though it, but I missed 35 days of work due to pain events, hospital stays, and doctor visits. The key word, and I wish I could be as tough as some and push through, is “was”. I resigned from that position last August. I am not sure how people hold down typical full-time work when their TN is very active. I did, as I refused to do nothing, start an online business (a hobby business) that makes some money to help us out though not nearly as much as my teaching job brought in. Hopefully it will be more successful as I keep working at it. Depending on what you do, however, the reality is that you may have to re-tool your existence a bit to fit around your TN. Best thing you can do is try to learn which triggers set yours off over time and try to control those elements. Fluorescent lights really mess with me, for example, even with special lenses I can only be in fluorescent light for 35 to 40 minutes before I am in major trouble. This makes it really difficult for me to do anything that would keep me under those kinds of lighting situations all the time. The longer I expose myself to them, the longer the pain (usually burning these days) lasts after. Cold wind triggers mine as well. Basically, 40 degrees F or lower…so I have to me mindful of it. I am really good about bundling up these days and finding ways (creative wardrobe choices) to keep the wind off my face and right side of my head when it’s cold. All things you’ll pick up on with time. Folks with TN can absolutely still enjoy life, but depending on what you find out when you see your neuro eventually and what medicine therapies work for you…you will have to become the master of your existence. I mean that to be positive, I hope it does not sound otherwise.
In the meantime, you might try to get your GP to prescribe Indomethacin. As with all things, talk to them about it and discuss the benefits and possible side effects. It is an old NSAID that has been found to help with neuropathic pain whereas other ones of the class are primarily anti-inflammatory therapies which do not really do that much for TN as it is not an inflammatory disorder. Indocin, or Indomethacin (generic name) helps me. Might work for you too. Here where I live it costs $4 for a month’s supply without insurance as well.
Hope the pain gives you the rest of the day off.
Fred
I took it briefly…Tramadol did nothing for me other than hurt my wallet and give me side effects.
I use a microwaveable heating bag constantly.
I use it for my tn2 constant pain and for my electric shocks as well.
I have some triggers, and avoid those, but lately can’t seem to figure out what else is triggering the shocks, so it’s hard to avoid.
Tramadol just made me loopy and gave me a headache hangover the next day.
My shocks are frequent and repetitive. I also use breathing and I try to focus on another part of my body, like my foot. It sounds odd, but when you close your eyes and try and feel your foot, hand or leg, it takes some of the focus off the pain.
((Hugs)) Mimi