Need some encouraging words please

Was up all night having multiple attacks. First time in years that it has kept me up all night long. The meds don’t seem to be working and I’ve been fairly lucky the last five years…until now. In the last month, the pain has progressively gotten worse and I’ve become very isolated. Even my husband doesn’t wake up or react anymore because he has become used to the screaming when I’m having an attack. I’m still trying to work to maintain my insurance but I.m not sure how I can do it much longer. I’m afraid to eat, talk, move, and now…sleep. Can someone please help me and tell me what works for them? I’m a social worker. i help people for a living, but right now, i can barely help myself.

I’m so sorry. I’m sure you have tried warmth already. Have you tried lidocaine patches or cream? If your meds are starting to not contain the pain it maybe time to switch medications. Till that time remember you are not alone. I know it is really hard to hear this when the pain is a driving force, but this too shall pass, take it minute by minute if need to. If the pain gets too much poke that husband up and have him to you to the ER. Hope you feel better soon and have less pain.

No miracle cures from me, sorry :( I just take my meds as regularly as possible try not to stress toooooo much and sleep at night. I hope for better for you soon.

Having a bad time at the minute too - I'm wearing a hat at home, keeping my ears covered and heat on my face and eating meds and pain relief like smarties. It's probably excruciating for you to open your mouth to eat but try to get something down, even some soup or custard or something that you don't have to chew, hopefully you'll feel a bit better having something in you. Try not to get stressed over work, try to forget about it for the moment and focus on helping you, you're number one. Everything else can wait. I hope you feel better soon and the attacks ease. Feel free to message me if you want to have a rant about it.xx

Hi, like the others have said there is no miracle cures to stop the pain, only the meds which we are given but I do feel for you and know what it's like to be kept up all night with the pain. Hopefully this will settle down a bit for you soon but if not go back to your doctor asap. Heat and change in temperatures are my main triggers so I have to be careful with this otherwise I am about on the floor with the pain. Like yourself, i am also a social worker but ended up having to go on sick leave as i could no longer do my job and the side effects of the meds prevent me from driving, I have gone through all the emotions you can go through about this horrible illness affecting my job and my whole life but I have had to come to the conclusion that what will be will be as I can't change anything at the moment. Remember that you and your health are the most important things for you at the moment, and if you need to take time out from work and once you have this under control you can go back to the job which you obviously love. The only advice I can offer is to try talking to your husband and tell him how this is making you feel and that you would like or need his support during the night when you get these attacks, you never know he may then want you to wake him up so he can comfort you! As Ciara said fell free to message anytime, we all need to let off steam and we are all here to support one an other xxx

By the way Jackie, loving the cats! xxx

Ayoung, ((((((( hugs ))))))!
I’m so sorry you’re in so much pain, me too, it sucks.
Have you been increasing your med or adding a new one to the mix? If not please get a hold of your doc ASAP!
I’m in pain because I had to cut my Neurontin in half due to side effects, and have just started low dose Baclofen, I know I’ll be in pain another week at least before new med starts to kick in. At least I hope just another week, my best friend has become my magic sack that I heat up in the microwave, heat for me helps take the edge off as well as a couple of Advil. But I still have immense pain.
When we’re in this state it’s hard to think clearly, so be gentle with yourself and try and get some nourishment. Please don’t stress about work etc, it just makes things worse.
I wish I had better advice to give, know that I’m thinking of you…

Thank you all so much. It really does help to have others who understand. I have only had 3 attacks since this morning versus the 17 ( yes I counted) Last night. I’ve been increasing my med as per neuro and it only seems to make it worse. I don’t know what is happening. For years, I was on 600 mg trileptal and just fine. Now I’m on1200 and worse since the beginning of this relapse a month ago. Does the lidocaine work for TN1? I don’t have constant pain, just the shocks. You are all awesome. I’m so glad to have this site.

I'd love to give you some encouraging words also, but I'm having trouble wearing my reading glasses because the pressure is to great.

A heating pad on my back for comfort, trying not to touch my face AT ALL with my chilly hands..(OMG!) I know you know what I mean...

I'm meeting with a new neuro on Tuesday, go from there.

I wish you all some relief


Hi, I am brand new to this and just looking through discussions but I am struggling with some of the same stuff. It’s hard to imagine you guys have been going through this for years. I asked my doctor to prescribe lidocaine 5 percent cream to apply to my area of face and gums. I might be crazy but it actually helps. I use just a small amount especially before bed and I have been able to relax enough to get asleep last two nights. Before this I was just crying and screaming from shocks and spasms when I tried to sleep. I’m also on 2nd week of topomax and it may beginning to help some. I can go 2 hours without an attack now. With lidocaine I think you only need a small amount to numb and need to be careful, I just told my doctor I wanted to try it and she has been pretty open since she doesn’t know much about tn.
Hope you feel better

Hey there,

Well if misery loves company then ATN is a PARTY PIG!!!

I find getting upset, crying etc makes it worse.

I use relaxation techniques including visualization and deep breathing.

I also find Epsom salt baths (immersing my entire face - except nose & mouth) helps too. It can make your blood 'pulse' stronger but with the relaxation of it all it doesn't seem to aggravate the monster.

I've wondered if sensory deprivation would be an available, viable option (likely beyond my budget; but makes me wonder).

I also find using a muscle relaxant - just over the counter - helps as I tense up when in pain. I also use moist heat (put a slightly damp tea towel inside a plastic bag shaped like a long roll and microwave for a few minutes, wrap in another tea towel) helps with tense muscles.

I also focus on all of my blessings, sometimes running through them repeatedly just to keep the focus on how lucky I am - other's in this world have far more challenges than I.

Oh, and a glass of red wine seems to help too!!

I also write poetry to express my feelings - helps me 'battle' the monster with words. (that is when my eyes aren't really impacted)

There was a quote by the infamous Monty Python something like "I was sad because I had no shoes, until I met a man with no feet" - or something like that - I just can't find it right now - quite poignant and funny too!

Anyways, I hope today finds you happy and pain free - or at least pain tolerable.

You are not alone.


~Harm None~

So sorry you are suffering. Night before last I was right there with you. The last 2 days have been better for me. I am recovering from my 2nd MVD surgery and as strange as it sounds the TN pain was as bad as it’s ever been.
Had 2 other surgeries in between to fix a csf leak. I had to switch from 1800mg neurontin to 75mg of lyrica 3 times a day. Praying this last surgery is a fix. I wish I knew some comforting techniques but most have been mentioned. I do know when I let it get the best of me and cry…it gets worse.

I think that when it’s unbearable you should go to the ER. At least they can give you pain meds intravenously. I remember being up for nights in row and going and finally feeling that relief. OMG what a wonderful feeling.

Praying you find answers!

Yes don't suffer another nite like that - go to ER

If you are gonna do that MVD the sooner the better - the better the outcome %

Lidocaine works miracles on type I

I had to leave social work for 1.5 years

now I'm back

There is hope!


Hi Kcdancer, that was so uplifting to hear that you're back in social work after 1,5 years, I've been out of social work for just over a year now so there is some hope of getting back into it once I've had my MVD's but good for you and well done. : )

thanks! I voluntered very intermitently with hospice when I had a good day here and there - helped my self esteem : )

Mandy said:

Hi Kcdancer, that was so uplifting to hear that you're back in social work after 1,5 years, I've been out of social work for just over a year now so there is some hope of getting back into it once I've had my MVD's but good for you and well done. : )