Been lurking, but need to vent

Welcome New Member Introductions
1

I have ATN, and had a brief-ish remission for about 6 weeks. I went off all my meds. I had a recurrence just about 6 weeks ago, and none of meds are helping! None!

I’m taking tripeptal, neurontin, magnesium, riboflavin, and b12. I was on baclofen for a few months during my last pain cycle, but it made me so distracted/loopy that I couldn’t function at all. I left my keys in my car, with the car running, for 4 hours! I couldn’t complete sentences, I couldn’t think of normal vocabulary words. I was a mess. Plus, it didn’t seem to help, so I’m sworn off that stuff.

I have recently been diagnosed with MS, but I don’t have any symptoms–although now there’s a chance the TN is the symptom, I guess. I’m seeing an MS specialist in 2 weeks.

Another poster in an older intro post had a number of people recommend a tricyclic antidepressant–I have been to 3 neurologists in the course of 1-2 years, and none of them has mentioned this possibility to me. These neurologists were at the Cleveland Clinic, Ohio State University, and a local doc. My sister-in-law searched her paid doctor database for treatment options (she’s a pediatrician, so she can get into doctor material we can’t see), and these antidepressants weren’t mentioned. How can I suggest to a neurologist that I want to try these meds if they’re not cited as a possible treatment?

I’m beside myself right now with pain–it’s getting worse, not better. It’s bad enough, I can’t think or do much of anything.

As far as we know, there was no episode to cause the onset of my TN–just a severe bout that sent me searching for a doctor, then another doctor, then another…

I also have a blood disorder that forces me to be on anticoagulants for the rest of my life, so the nerve-block doctor I saw wasn’t willing to do a nerve block. I agreed with him that the likelihood of success made it a wise choice. I still understand, and think I would just be devastated when it didn’t do anything.

My biggest trigger that isn’t really a trigger, but aggravates my pain when I’m already in pain is any sort of odor. I can’t be in the kitchen when anything other than pasta is being cooked. I can’t smell soap on anyone’s hands. I can’t smell shampoos or toothpaste.

I tend to crave breads and other non-stinky foods, too–it’s weird.

Anyway–this is my intro and a vent about how much pain I’m in. I hurt a lot. :frowning:

2

Just just suggest to your dr that you wish to try a tricyclic anti depressant.They are widely used here in England for type 2 with good success.

3

Thanks–I will bring this up when I go to the specialists at the head/face
pain clinic in December.

4

Nortriptyline helped me tremendously, I would definitely ask to try it.

5

Judy, you might ask your PCP (GP, Family Doc) for a trial of the anti-depressant. If it helps, that will be interesting information for your appointment in Dec.
Seenie at Moderator support

6

Thanks–I will definitely ask about this.

7

Thanks–that’s good advice. My GP is very level-headed and open to things
like this (at least I like to think she is…). I might make an appointment
to see her when I return from my vacation.

8

Gosh, hit with a double whammie–MS and TN. This is a safe place to vent, share experiences and celebrate successes! Welcome.

It sounds like the other folks chimed in with my suggestions. Just wanted to say howdy and prayers for all of us living with this.

9

I learnt a lot about new medications and treatments when I joined this community and I think you’ll find it helpful as well. As for your medical issues, my deepest sympathies and prayers go out to you because I know first hand how debilitating this disease can be. What I find Judy is that when I’m having a flare I want immediate relief and unfortunately, with the type and combination of meds we are all on it doesn’t work that way. And when I don’t get immediate relief, I tend to worry and stress myself out even more, making the flare even worse. Stress is a big trigger for me and I have to always remind myself not to worry and be anxious etc and just try to be patient and get through the flare. We all have the greatest strength in us to survive this day in day out so you just need to know that you will get through it even though it seems impossible, just believe and do what it takes to survive, and sometimes that means being very selfish and putting yourself before others. Best wishes :slight_smile:

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Hi Judy_CN

You should definitely ask to try a tricyclic. I don’t think all DRS are aware of how much these meds can help, especially with atypical pain.

I have been on Amitriptyline and Nortriptyline over the past few years. Both have helped me tremendously with my atypical pain. Amitriptyline does have some side effects but I think it is generally handled much better then anti-convulsants.

Jane

11

Can I vent with you? I’m having one of the worst periods of TNthat I’ve ever had :disappointed_relieved:. I simetimes don’t know how I’ll get through this one.I have never had such constant, unbearable, drilling, lasar pain.
I’ve had diagnosed MS since 1998 which had probably been there for at least 20 years before. The TN popped up pretty soon after my MS dx when I started running a low grade fever. The whole right side of my face and head just went numb. It lasted for 2 months. The same thing happened the following year, but as long as it didn’t hurt I lived with it in relative peace. At the time I didn’t know it was or that TN existed. I just accepted it as part of my MS.Since then it has only gotten worse and worse :triumph::fearful:. Right now nothing is helping much. I get to 1000 Mg of Tegratol almost daily. Well, the sun is shining and I’m off. Ow for my morning swim :smiley:. I guess I’m living through this extreme bout of TN again :confused:. Wishes for days of less pain :innocent:.

12

I have had a tricyclical for just a few days, and already feel so much relief! I can’t believe how long it took to find out about these meds! I hope I’m not being overly optimistic, but man, I feel much better all of a sudden!

1 Like
13

Oh, Maris! That sounds so awful! Chronic, daily intense pain is so, so debilitating!! I can only hope you will find relief sometime soon. I am having success with a tricyclical antidepressant–is this something you could try? I will keep my fingers crossed that they find something for your pain.

14

The tricyclics are old drugs, off patent, cheap and lacking “sex appeal”. I guess it’s no thrill for a doc to prescribe them. And all that said, Judy, your news is FANTASTIC! :tada:
Seenie
PS who wrote the script for you? Your GP? Any push back?

15

That must be it–it’s just so amazing that they wouldn’t bother with
something so helpful. Grrr.

16

I have ATN and the tricylic antidepressant works lot better than the anti-seizure meds like Lyrica, Neurotin, etc.
The TCA’s have less serious side effects on me.
Actually no side effects in comparison to anti-seizure drugs.
They will make you sleepy at first; but I take one as soon as I get up and go to work. 2nd 6-8 hours later. 3rd one a few hours before bedtime.
The one I take is Doxipen 25mg. 3 times a day.
Also. I get great relief with Capsician Cream.
Use gloves or wash fingers with vinegar to prevent tranfer symptoms You must stick with it at least a week before burning effects goes away. Apply 4 times a day,especially first sign of pain.
I highly recommend the TCA’s.

17

I really appreciate the information that we have here from Red.
He said in a previous post that TCA was use for atypical TN, and anti-seizure drugs for the TN.

I was already taking 25mg. at bedtime when I got ATN,and like the inexpensive drug. So increasing was easy. If I forget to take when I get up, the pain will start. Then less than one hour the pain is gone. I am Able to work and still enjoy life.
Some days just a little pain.
I also I use a compound cream with Gabapentin 6% and Capsician cream.

18

I am just on 10mg of the TCA right now, which I take at night when I go to
bed. I appreciate knowing I can increase it if I need to.

I moved to taking 1/2 of my nighttime dose of Trileptal 2 days ago (on my
own–experimenting now that I’m on the TCA), and I’m worried that I’ve got
a tiny bit of pain today. Rats. I would like to move off the
anti-convulsants. I take 10mg TCA at night, 600mg of Neurontin at night,
300mg (previously 600mg) of Trileptal at night, then another boost of
Trileptal (300mg) first thing in the morning. I also take riboflavin,
magnesium, and B12. Not sure they do anything, but who knows.

My husband uses capsaicin cream for back pain, so I’m very familiar with
it. I can’t imagine putting it on my face, however–where do you put it?

19

The TCAs may not be “sexy” Judy, but another way they are used is for people with chronic insomnia, especially when it is due to pain from something like arthritis. The big advantage is that they are not habit forming, and they work.
So I’m guessing that you are sleeping very well these days (even if you need an extra jolt of coffee to get going in the morning!).
Seenie

20

I put on face over my tooth pain area, behind ear for ear pain. Under the lower jaw skin. And base of neck to under the ear
It will burn on new areas at first but burning will go away as you continue to use it
It really works good. I do it 4 times a day and when it starts hurt.
U have to be careful not to get in eyes nose
Or mouth. Use glove or vineger I fingers
It can easily be transfers. But it is worth

Also use TCA. Doxepin. 25 mg 3 times a day