Help! please so new to tn don't know where to turn now having break through pain

General General TN & GPN (Old Site)
1

Please anyone I need help.

I just returned from 4 days at Mayo. They think TN, this is because I don't seem to have a trigger and MRI shows nothing. Had not even gotten home and had attacks. Went to hospital, still had all my MAYO info. ER was packed here at home, they treated me like crap, I was a crazy woman :( Signed myself out AMA, they were going to kick me out anyway.

No pain once home. Ok a few hrs, now it is happening again. I can't get ANY of my dr.s to call me back.

I have taken all pain meds I think I should already.

WHAT DO I DO????

2

Forgive me Phoebe if I sound like a broken record. You do probably already know this. Take a look in the section “coping with crisis” in the Face Page Info tab. There are some suggestions there. I do wish I could help you, it sounds just awful for you. I do have triggers and my MRI was fine but I have a vessel nearby which may swell with increased BP and they do agree as do I that I do have TN.
Please keep in touch.
Jackie

3

You're not alone! All of us have been through this, as Jackie mentioned.I think Jackie meant the tab that says "Face Pain Info" , among all the other tabs along the top section of the page. I'm so sorry for your frustration and pain. There are things you can do at home to help lessen the pain. These suggestions might help you so you can feel good enough to read the important info about face pain. Do you know if you have typical or atypical yet? Here are things yo ucan do this weekend, but when you can see a Dr., you can ask for the standard treatment, gabapentin or other anti-seizure meds that help nerve pain. Also vitamin B complex helps heal damaged nerves.

1) I really like Voltaren Emulgel pain gel. It's over the counter at the pharmacy. I actually get a prescription strength of it so I can get it free here in Canada where my meds are free, but so many people have commented that the gel helps a bit, enough to take the pain down a notch or 2 on the pain scale from 1-10, with 1 being no pain and 10 being the worst pain you can possibly imagine.

2) a warm washcloth or a heating pad or a heat pack on your face. A heat pack is a cloth bag filled with wheat or rice, that retains warmth when put in the microwave for a minute.

3) Acupressure. Look in a mirror at your ear. See the little piece of cartiledge that points toward your ear, just above your earlobe? If you can bear it, touch there, then as you open and close your mouth, you will feel the place where your jaw is moving. Stop there and press gently, there is a nerve there. When I can't bear pressing on the side that hurts, I have actually pressed on the opposite side, it seemed to change the location of the other side of my jaw, in case a nerve was compressed in that area. Not all do have a nerve compressed right there, but it's worth a try.

If you look under the tab up top that says "forum/discussions" you can find a LOT of discussions about little things people do at home to help a bit more when their pain meds are not working. Here are a couple that have good info not only in the original post, but from the people who commented under the post.

http://www.livingwithtn.org/forum/topics/share-your-little-helps-with

http://www.livingwithtn.org/forum/topics/natural-alternative-treatments

There are so many other discussions on the same subject of things that help when your meds are not controlling the pain.

Just don't give up! There are so many different combinations of medications that your Dr. can prescribe for you, and different dosages. You just have to communicate well with him/her and tell the Dr. when it's not working, so he can change it. You will find so much information here about the different medications that work for people. You've found the best website on earth for Trigeminal Neuralgia.

Kind thoughts,

Sheila

4

Phoebe, I know how painful this is, and how scary it can be. I've been there, we all have. You're not alone. Just try to keep busy with mindless tasks like laundry or gardening, and hang tight until Monday when you can reach your doctor. Just keep reminding yourself that Monday isn't that far away. And if your doctor isn't helpful, you can find a different one. And when all else fails you can go to the ER, a different one even.

You're still new to this condition. There are many meds that you haven't tried yet, and it takes a while for them to work, so while I know it's hard right now, keep hope that you'll find something that works.

Do you have family or a friend that could spend time with you? Even if I don't want to talk, I've found that just having someone there makes it a little less scary. If not, keep logging on here.

I hope things calm down for you soon.

5

What I did was get prescription lidocane patches and creme

keep posting

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Yes I have used that too, just the lidocaine cream. That helps a bit too, but be careful, you can easily get too much in your system, which can make your heartbeat really erratic. Anyone with heart problems would really have to be careful with lidocaine used anywhere, in any form.

Can you tell me about the patches? How long can you keep them on for? Do they really work? My mom needs something like that for a different condition.



Kc Dancer Kc said:

What I did was get prescription lidocane patches and creme

keep posting

7

i was at mayo twice and misdiagnosed, so please dont give it a thought. this has been quite a week so ive resorted to my bedroom. you have had enough anxiety and few drs. call back.

try to relax. call a friend. rest.

did mayo help? my husband refuses to return.Ers dont really help. you are better off at home.

did mayo help at all? we are here if you need help.

I have a dr service in which you are called back pronto. Its extra. you can have her advice for free. take an extra neurontin or valium. apply moist heat, soothing music. it will pass. divert your attention. think about any other part of you party than the painful one. call a friend.

8

The most important thing is that you don't mess with medications..If you mess with ur drugs the pain could get worse.

Find a neurologist or a pain clinic and see someone ASAP. If they give u a drug stick to it and use it very carefully. Don;t mix it with anything else or take less or more than the prescribed dose.

My thoughts are with you..

Blessings..

9

yeah, I personally would not take an extra neurontin/gabapentin without consulting your doctor to see if that is okay. This can have some side effect, including seizures, so not good.

I think one thing that you might be obsessed a bit with is that TN is not a disease you are going to get a good solid answer from..... it's not like getting cancer, and then you get a set plan and treatment. This condition is all about trial and error. Not everyone can take lidocaine. Definitely talked to your doctor about that one. For me, there is something about the numbness in my face that the doctor said no to the cream for now.

When I have bad breakthrough pain, I get a heat pack, like suggested, take my pain meds, an aleve, and sit myself in a comfortable and cool dark room. Does it make it better, sometimes. Sometimes not. But I take myself out of any "zone" that can cause irritation, stimuli, or stress. I also have been okayed to take my anti-anxiety meds. that has been HUGELY helpful for me, as it brings a sense of false calm to the situation. Instead of laying there wanting to die and focusing only on that, I can focus on breathing deep and kind of centering myself.

I wish I had better news for you.

10


lidocaine patch is 12 hours off and 12 hours on. They are big, so you cut them to size you need - so an RX

would last a very long time

Sheila said:

Yes I have used that too, just the lidocaine cream. That helps a bit too, but be careful, you can easily get too much in your system, which can make your heartbeat really erratic. Anyone with heart problems would really have to be careful with lidocaine used anywhere, in any form.

Can you tell me about the patches? How long can you keep them on for? Do they really work? My mom needs something like that for a different condition.



Kc Dancer Kc said:

What I did was get prescription lidocane patches and creme

keep posting

11

Phoebe,I don't know what to say to help you. I am very new in this TN thing. All I can do is say a little prayer for you. I don't know you but we share a common thread and I can understand your situation a teeny tiny bit, but it is unique only to you at the moment it strikes. You are in my thoughts.

Dixie

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ladies, hi dixie. i need to talk to you on the phone. write me when to call, ie phone.

there are usually stronger meds for this purpose. you want the best facial pain neuro you can find. even if you travel to a university center. call first. send records. it is a tough search.

take the med. do anything to relax yourself. right now im probably going back to bed and taking a pill. i get cranky and irritable which is a waste. try to meditate. music, bath, candle, imagery, sleep. but try very hard to think about a part of your body that feels fine.

dixie im tyrying to function, using same methods, going to usf jan. may have surgery in a few months. found someone to try blocks. how are you.

id better heed my ad vice

13

I didnt do well at mayo. Nothing showed on tests. I was there twice. When medical issues showed up in a normally health person. I know was believed. Stay with the websites and try to find someone locally to work with. I will be starting a patch to reduce inflamation. recently released by FDA.

THNK YOU SO MUCH!