Getting worse


This is only the second time in my life I've had a bout of TN. I've been on the medication for a few weeks, and ramping it up. Right now I'm taking more than I should, and it's not helping. It's happening at the slightest provocation, or none at all. I've brought my straws out again, from last time.

I'm worried because I have a meeting with a potential client on Friday. I'll probably have to explain why I will occasionally be grabbing the back of the chair or the table and looking like I'm in an electric chair.

I work as a web designer, so it's mostly from home.

I'm worried that she'll think I'm not capable of doing the work because I'm a freak.

The doctor I saw the other day said that sometimes people only get this now and then. Mine was in remission for 3.5 years. Should I hope that it will go away again? Or should I consider surgery?

I don't know what to do.

Has anyone tried topical anesthetics? (I was just reading online that some can kill you. Maybe there are some that don't kill you.)

Oh no!! Sorry it has come back!! I have read a lot of good things about lidocaine patches and the dr. can just phone in the script!! works wonders for a lot of people!! hope you get it calmed down soon and have another nice long remission!!


Thank you. Maybe I'll ask a Dr about those.

Do people talk to their employers/clients about TN?

Is anyone else taking Pregabalin? How much are you taking for the pain? At first the Dr said 25 mg, but I've ramped it up to 100mg this morning. It hasn't really been doing anything.

I have a bad cough as well and every time I cough... zap

Hi Innernature! Think about the most famous physicist of our time Stephen Hawkins and do not think people can not accept people who are physically different. Take a look on Youtube if you have not heard of him or read his bio in Wikipedia. I would immediately tell your client of your condition and include the Wikipedia link on TN (or your favorite link). I have noticed that if I prepare people for the worse than I can just relax and let the chips fall where they may. Tell them you are not sure if it will strike but just be prepared and not panic. The condition of TN is not life threatening... just incredibly painful. From my experience, if given the facts, people are most gracious. I think that is one thing we can do for ourselves is to prevent worry about things that we can not control. Imagine if your client had this condition and how you would feel. Give ourselves every benefit of the doubt. It is sorta like practicing "tough love" on our selves but establishing good boundaries and clear communication. Turn our worry into beneficial actions for ourselves and others. Don't worry... I am really just telling this to myself!! :) You will do fine. Let us know how it goes.

About surgery, read some of the topics on the forums. Maybe you could meet with a trusted neurosurgeon just to consider your options. And start a reading program and start a medical journal on the pros and cons. Best of luck and so sorry for the return of TN. Hopefully it will go into remission soon. Sending peace and healing, Tina

PS- How I am keeping the pain at bay currently is 500 mg Tegretol and 30mg Cymbalta

Thank you for the reply. I think I will tell her. Maybe by tomorrow I can find some better/more medication. I was super dopey this morning after I increased the dose. I will probably write a blog post on my website.

I know of Steven Hawkings. I started reading one of his books. But he's an absolute genius. And I don't have a machine to talk for me.

I appreciate the support. Thank you very much.

My TN returned at beginning of Oct and has been the WORST I have ever experienced (previously suffered in 2007, 2008 & 2009) My GP has only just got the pain under control in the last 2 days by increasing my Gabapentine dosage to 8 x 300mg and in addition I am taking 2 co-codomal 4 times a day, so basically tablets every 2 hours from 7.30am to 9.30pm!!! I am very sleepy from 3pm onwards but can function ok in the mornings.

I would ask if there is anything else you can take with your current medication.

When this condition is at it's worse,there is not much you can do but ride it out in my experience.I added Tylenol extra strength(too many) and hydrocodone to my drug cocktail.It still was uncontrollable at it's worst and not something people enjoyed viewing.BUT,just relax, be honest, and be yourself.Let your talent shine through and speak FOR YOU.Take the attitude that they need you more than you need them and that you can greatly help them.Good Luck!PS...Tina wrote a great reply!

Each and every one is different But I waiter too long for surgery. I now have anathesia dolorosa. the nerve is extremely damaged. but I just kept putting it off thinking it would get better. Be careful.

Thank you Don. I need to have that attitude more often. It's hard because the job market favours the employer these days.

I asked the potential client to reschedule for Monday. I've lost my voice due to this cough that I have as well. Maybe I won't have to explain about the TN.

The Doctor I went to said that some people only get this a few times in their life time. That was good to know.

Santafered, how long did you wait? Why do you think waiting increases the risk of getting Anathesia Dolorosa?

Thanks for your replies. I'm feeling a bit better this evening.

The lidocaine patch helped me. You have to take it off after 12 hours or it can hurt your heart.

I would strongly recommend getting a second or third opinion on your teeth. I had a cracked molar which went undetected even with several xrays which seemed to affect my tn. I had one major attack but felt sensitivity for about a year.