What is my next step?

General General TN & GPN (Old Site)
1

Okay, a little history for those who don't follow me around every minute of the day. ;)

I have had left-sided pain off and on since August of this year. In fact, when I saw my doctor in August for what I called "the worst pain of my life" (hahaha, I knew so little at the time) my doctor was convinced I was having a stroke because the left side of my cheek and lip was kind of droopy.

I was not having a stroke. The ER doctor actually kind of giggled, and sent me on my way after a shot of Toradol.

Fast forward to October. The face pain stopped feeling like a face-migraine and more like being electrocuted randomly. In the beginning it was a few shocks over the course of a day, and by the end of October it was almost 24/7. Horrible.

I saw several doctors, from my regular guy to a few urgent care doctors when I couldn't get in to see my guy. They diagnosed me with everything from:

  • ear infection
  • TMJ (which I actually have had, but for about 15 years with no symptoms other than the jaw clicking. No pain)
  • post-herpetic neuralgia (without the herpetic part!)
  • a tooth problem (nope)
  • more ear infections
  • and then finally to TN.

I started Tegretol at the beginning of November and almost instantly noticed a difference. The electrical pain when away, although unfortunately it gave way to a constant, aching, pulling kind of pain that sticks with me almost all the time.
A doctor at the ER gave me hydrocodone, which was very helpful in putting me to sleep but did nothign for the pain.

I saw my regular doctor last week to get a referral to a neuro, and in addition he increased my Tegretol. I'm not a fan of the side effects, but what works, works. So far I'm taking the big half of my dose at night so that I can be tired and dumb and itchy in my sleep instead of at work.

Unfortunately my neuro cannot see me unto January 28th (ugggg) and now that my regular doctor has referred me out, he sees no reason to see me again. (This was his nurse speaking)

At this point, I'm wondering if there is a second medication that can be added on to help with the constant pain. I've read about a few, but I always feel awkward calling up a doctor and saying "hey, can you give me this drug?" Even though they aren't narctoctics..still.

So...any opinions on my next step? Do I just keep on keepin' on with the Tegretol until the end of January? Do I press my doctor to prescribe something extra? Do I go the urgent care route?

Thank you in advance for your help.

2

Your only option, given that you just started your regiment may be the ER. Most GPs don't want to prescribe drugs in this class (anti-convulsives) with the potential side effect, too much liability. I ran out of meds, my own fault and was having bad breakout pain. I found a nice GP who wrote me a script to get me to my next neuro visit. Thing is I was on it for 2 years already and tolerated it well.

3

Some here say Baclofen boosts there anti convulscents so that could be an option to discuss with your DR.

4

Hi Roselyn,
First question, how much Tegretol are you on currently?
Second question, what’s your pain like on scale of 1-10?

Of course I can only relay my own experience, when I was first diagnosed I was given Tegretol, within 48 hrs I had some relief of the frequency of the shocks I was getting for my TN1, after several weeks I wasn’t getting as much relief as I had hoped and my doctor switched me to the slow release version of Tegretol. ( Tegretol XR or CR, depends what country you are in)
I finally found relief at 800mg Tegretol and after a few weeks I no longer felt the side effects. (after each increase I dealt with them for a week to 10 days).
When my TN2 appeared on left side, I was now bilateral TN I increased to 1200mg Tegretol and found relief again. After a few weeks with my neuros permission I started to wean off the med completely and actually had an 8 year remission!
When my TN came back I started on Tegretol slow release again, once I got to 800mg I again found sweet relief and managed to work and live “normally”. I would try from time to time to wean off, but this time after 24hrs minus a 200mg tablet I would feel the TN …so I wasn’t able to wean off.

I would highly reccomend staying with the Tegretol since you’ve seen it work for you and just increase ( with your doctors permission) until you find your sweet spot=no pain!
Maybe switch to the slow release or discuss Baclofen as Jackie mentioned as it helps boost the Tegretol when you are on a high dose of Tegretol to get effective pain management.
I wouldn’t entertain adding new meds to the mix until you’ve reached your max with the Tegretol and are suffering in pain.
Sometimes the difference is one pill.

Of course you know your own body best, but if your struggling I would get an appt with the doctor asap due to your pain crisis, and ask him his thoughts.
((((( hugs )))))) I hope you find relief soon, Mimi

5

My neurologist gave me Amantadine to help with the brain-fog and tiredness that I experience as side effects of larger dosages. I'm currently on Lyrica (75mg 3/day) and Tegretol XR (100mg 2/day) because I don't tolerate the higher doses of Tegretol alone and I'm taking a break from Neurontin.

I'm pretty much living a normal life with almost no breakthrough pain right now, although my short term memory is still impaired.

I call my neurologist and ask for exactly what I want. As long as you aren't pushing for narcotics, they usually give you a prescription over the phone if you sound like you know what you're talking about.

6

I am on 200mg twice a day, although I’ve been taking an extra when the pain is really awful. The shocks were probably an 7 of 8 on the pain scale, and this constant pain is more like a 7 but a 7 that never freaking ends. Its worse at night.
I called my GP and he requires an appointment even though I saw him less than a week ago. Going in next Tuesday.
I’m not really thrilled about going up on the Tegretol because the side effects in the first week of the increase are horrific. I have a 2-year-old who needs me to be able to drive and work and pay attention to her




Mimi said:

Hi Roselyn,
First question, how much Tegretol are you on currently?

Second question, what’s your pain like on scale of 1-10?



Of course I can only relay my own experience, when I was first diagnosed I was given Tegretol, within 48 hrs I had some relief of the frequency of the shocks I was getting for my TN1, after several weeks I wasn’t getting as much relief as I had hoped and my doctor switched me to the slow release version of Tegretol. ( Tegretol XR or CR, depends what country you are in)

I finally found relief at 800mg Tegretol and after a few weeks I no longer felt the side effects. (after each increase I dealt with them for a week to 10 days).

When my TN2 appeared on left side, I was now bilateral TN I increased to 1200mg Tegretol and found relief again. After a few weeks with my neuros permission I started to wean off the med completely and actually had an 8 year remission!

When my TN came back I started on Tegretol slow release again, once I got to 800mg I again found sweet relief and managed to work and live “normally”. I would try from time to time to wean off, but this time after 24hrs minus a 200mg tablet I would feel the TN …so I wasn’t able to wean off.



I would highly reccomend staying with the Tegretol since you’ve seen it work for you and just increase ( with your doctors permission) until you find your sweet spot=no pain!

Maybe switch to the slow release or discuss Baclofen as Jackie mentioned as it helps boost the Tegretol when you are on a high dose of Tegretol to get effective pain management.

I wouldn’t entertain adding new meds to the mix until you’ve reached your max with the Tegretol and are suffering in pain.

Sometimes the difference is one pill.



Of course you know your own body best, but if your struggling I would get an appt with the doctor asap due to your pain crisis, and ask him his thoughts.

((((( hugs )))))) I hope you find relief soon, Mimi
7

If you are ITCHY - you should call pharmacist tomorrow and see if you still should take it -

raising it might show a larger allergic type reaction and that would be verrrry bad : (

8

Roselyn, my youngest was 3 when I was first diagnosed and adjusting the meds, i completely understand your concern. It was difficult, but I had friends take my daughter in the afternoons, so I could sleep. The fatigue and dopeyness/loopy ness was the worst for me…
Are you able to get some time off , or have help with your daughter?
Unfortunately being on a low dose of Tegretol at the moment, it sounds like you might need to increase.
** if you’re experiencing an allergic reaction to tegretol you’ll want to address that first and foremost **
Starting and stopping meds or increasing existing ones will cause you a range of side effects, we’re all different, either way you might need some help until you get it sorted out.

Does heat help? I use a microwaveable Magic sack, that helps take the edge off…
Hope Tuesday comes quickly …thinking of you. Mimi

9

I do have my mother and my step-mother/father who take her occassionally. Well, my mother takes her every week day while I work, and my step-mom/dad take her on days where my mom has a previous appointment and can't take her. I have to limit my daughter's time around my father though, because he has late stage Non-Hodgkins Lymphoma and I swear every time she goes over there he gets whatever bug is hanging onto her. He is actually in the hospital right now getting treated for a lung thing.

I have a hard time asking my mom to take my daughter additional times so I can sleep because she has her between 5 and 8 hours a day while I work. She's no spring chicken, and it takes a toll on her. :(

I am a single mamma, and while she does have visitation with her father once a week, it's supervised and that won't be changing anytime soon (ever).

Sometimes I wonder...I was really pressured when I was pregnant to give her up for adoption. I wonder sometimes, if I had known that I would get TN two years later...I kind of wonder if I would have given her up.
On the one hand, she is the best thing I've ever had the honor of being a part of, and I love her dearly, but somedays when I'm exhausted and just want to sleep and she wants to have a tea party at 9pm (or 4am)...sometimes I get a little bit of a resentment.

Add on to that I'm getting the Mommy Guilt because she is behind on speech, and really, when the pain is bad, I just can't open my mouth and talk to her. It's a struggle to smile, but I have to, because it's not her fault I'm in pain. But it's hard being a Mom when you hurt.

Okay, that's my daily dose of complaining.

Mimi said:

Roselyn, my youngest was 3 when I was first diagnosed and adjusting the meds, i completely understand your concern. It was difficult, but I had friends take my daughter in the afternoons, so I could sleep. The fatigue and dopeyness/loopy ness was the worst for me...
Are you able to get some time off , or have help with your daughter?
Unfortunately being on a low dose of Tegretol at the moment, it sounds like you might need to increase.
** if you're experiencing an allergic reaction to tegretol you'll want to address that first and foremost **
Starting and stopping meds or increasing existing ones will cause you a range of side effects, we're all different, either way you might need some help until you get it sorted out.

Does heat help? I use a microwaveable Magic sack, that helps take the edge off...
Hope Tuesday comes quickly ...thinking of you. Mimi
10

(((( Roselyn ))))
I understand it’s hard to find care for your daughter, are there any parents of your daughters friends that could help out? Or maybe inexpensive child care services/ preschools offered through church groups? I don’t know, there’s got to be some kind of help you can access. To get to an adequate dose for pain coverage, it can take a few weeks.
As a mom I certainly understand your feelings of guilt, BUT what I’ve learnt ( now that my girls are older) is that kids are resilient! Amazingly so! My youngest doesn’t remember how much pain I was in back then, or how many times I shipped her off to friends or made her watch a movie while I dozed on the couch. No recollection whatsoever! My older daughter remembers, she was 9 or 10 .
In any event I really hope you are able to find relief soon, keep in touch.
Take care of you, Mimi

11

When you talk to your doc, be aware that: the three most often used booster drugs for Tegretol are Baclofen, Flexeril (a mild muscle relaxant), and low dose Valium (a tranquilizer). At 400 mg per day of Tegretol you are just barely at the bottom end of the range considered therapeutic. If you're getting all-over body itch at that dose, then you need to be very careful about increasing your dose, and attentive to the possibility of severe allergic reaction or even Stephens-Johnson syndrome.

Alternatives to Tegretol include Oxcarbazepine (Trileptal) and Gabapentin (Neurontin), both of which tend to be better tolerated with fewer side effects for many patients. Do let us know how your appointment comes out...

Regards

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

12

Hi Roselyn. we have an expression at our site that says, ' different meds for different heads" I rashed big time with tegretol and switched to gabapentin, lamicital and oxycodone for breakthrough pain. It has been very effective for me. Dealing with Primary Care drs can be a real drag because of their reluctance concerning pain control. Read the site and go back to the Regular loaded with TN information . Also, has anyone talked to you about a MRI. My primary doc ordered one for me and the neuro was able to see it before my appt.

13

If you are experiencing itching at your current dose please let your doctor know. I had just increased my dose to six hundred last Wednesday and by Sunday I was covered in a rash that burned and itches like mad...an allergic reaction. I stopped taking as soon as I noticed the rash and called my neurologist. BENEDRYL for a few days...back to normal. However I have to wait until Monday to start new med...Lyrica. Thankfully my pain has been medium. I also understand taking these meds while caring for kids. I have three and it was tough and my hubs works lots of hours, but I found that I can push myself much easier thru drowsy than pain. Wishing you the best!

14

I called my GP and they said to keep taking and they would examine my rash on my Tuesday appointment. If it gets really bad I might just go to an urgent care.