Introduction. My story. Questions.Remission. And so on

General General TN & GPN (Old Site)
1

Hello everyone, my name is M and I'm 29 years old. Thank you for letting me join this beautiful community. I'm here to share, get informed and give and get support.

So, my last "episode" was in 2011. I was living in Mexico City and the doctor I saw at the time told me I had Trigeminal Neuralgia. You see, I had been living with the pain on and off for years, since I was 13 (yep, first scary episode ever, and I was just a child) it used to come every few years, it lasted for days and then it would go away. Everyone kept saying it was migraines, sinus infection, blah blah blah and I got fed god knows how many pills and substances with no success until the day I went to see this doctor and he mentioned the word TN. I thought "never heard of that..." but I trusted him, and he prescribed tegretol, after finishing that one I took another brand (name I don't remember) along with vitamin b12 pills and after finishing those, vitamin b12 shots one every week. It worked. The pain went away and I haven't had a full blown attack since that year thankfully, just little "shocks" here and there very mild and never lasting more than a few seconds. But I know that's how it is, it goes away then comes back after a few years, so I guess that's the "remission" period? right? Well, to be honest I've never had a proper "doctor" keeping my records and stuff like that because I travel so much I never stay in once place for too long. I've been pretty lucky these past few years since I've been travelling all over the place and haven't had an attack once, but this time though is different, I just moved permanently to a new country and I'm hoping to get a diagnosis here so I can keep records of my condition, get checked regularly (not just every once in a while or only when I get the pain and in different countries) and get medicine when I need it, so I'm pretty happy about that. And that's my story so far.

I do want to ask a few questions. If you feel like answering please do so, any advice would be appreciated.

What if I wanted to start taking vitamin b12 to let's say....prevent? or strengthen? my nerves. Do I need to get tested for b12 levels before I start taking a supplement? what if I don't get tested and still decide to take them? Has anyone done this? I'm talking about sublingual b12 by the way.

Another question is: has anyone ever had remission periods this long? I did change my diet, I meditate and do yoga and walk a lot, and jog a lot, and adopted a dog who's fur is so soft it relaxes me when I touch him (doggies help with the relaxation) I mean, I want to believe changes in lifestyle can also help reduce the attacks.

Thank you to whoever reads this, and sorry about my English, is not really my first language as you can tell.

Love.

2

The medical evidence for B-12 as a strengthening agent for the nerves is very spotty. Some people in the alternative treatments crowd advocate for it, but there have never been rigorous trials to establish efficacy, that I know of. And yes, it would be wise to be tested for your levels before taking supplements for B-12. The US TN Association also pushes a book in its bookstore which advocates for the use of a low-inflammation diet in promoting lower pain levels. I've never seen trials data on that approach either.

I've spoken with any number of facial neuralgia and neuropathy patients over the years who have had spontaneous remissions of two years or more. But this outcome tends to occur in the early stages of development for Trigeminal Neuralgia, and to be followed by recurrence of pain.

To get a diagnosis, you'll likely need to be in an active phase of your face pain disorder. Doctors generally won't diagnose on the basis of a description only, and they certainly won't prescribe in the absence of a treatable condition.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

3

Get THE most popular, educated TN doctor where you now have moved to!!!!

You will have to research

Go to our member map and see if anybody is near you and could recommend somebody for you.

It is a progressive disease, so stay on top of it and learn allllll you can!

Great book we love is

"Striking Back" by Dr. Ken Casey

Many alternatives, for treatments, for meds, procedures etc.

It is 10 year old book, but all the basics are covered..... but you can come here and compliment this website with the book and get even more up to date info.

ask, read, learn, repeat!!!

If you have a flare up --- see if you can get your hands on lidocaine cream for your face,

or lidocaine mouthwash if inside your mouth hurts..... can work in minutes - but wears off..... keep applying as directed by doctor.

welcome!

PS - I don't know if this survey is still going - but somebody has been working on it in Finland

http://survey.tnfinland.fi/index.php/437967/lang/en

you can email them and find the results if it is not still taking survey info from us patients.

4

Thank you everyone for your kind replies. I've been doing a lot of research lately and you know, I came across Cluster Headaches, also met a guy who gets them and some of what he described certainly sounds very familiar. My "headaches" or "pain" always last more than a couple of seconds/minutes, in fact it can go on for hours and weeks, it's also very much always located around my eye and temple, and it just comes like that, no warning, just bang! it's there, and in about 5 to 10 minutes it gets to it's highest level of intensity, I can't stay still, I have to move, walk around, somehow distract myself from the pain and I've found that drinking can trigger it, I remember some of the times I've had the pain before always came after a night of having some beers or wine, that's why I stopped that,and smoking of course. Also the pain comes and goes during the day, it lasts a couple of hours, then goes down in intensity, then returns, and so on..... These are things I've also read in cluster headache descriptions so now I'm not really sure if what I have is completely neuralgia or cluster headache, maybe a combination of the two? I've heard of that too. I do get electric shock,stabbing pain like on my face but also the pain around my eye and temple which feels considerably different if I'm honest....so maybe I just need to keep searching for a doctor that will give me an accurate diagnosis. You couldn't believe that in this day and age some doctors really seem to have no clue about these conditions, whether is cluster headaches or neuralgia....why does it have to be so hard to get diagnosed and treated?

5

It's hard to get diagnosed because this kind of pain is relatively rare. Many doctors will never see a case of TN or Cluster in 40 years of practice after med school. It is definitely possible to have both TN and Cluster, or to have migraines as well as TN. To find a doc that other people have had a good experience with, you can start with the Doctors tab from our menu.

Best regards,

Red

6

go to google images

type in trigeminal neuralgia look at the pictures.... is this you?

then go back and type in cluster headache see which is closer

7

Thank you everyone that have left nice comments on my posts!! I'm packing right now, and getting ready for a 10 day summer trip to the beautiful country of Norway. Couldn't be more excited !! I'm only a little scared cause at the moment I'm not on any medication and I'm not really seeing any doctors so I have nothing to take if the pain returns while I'm abroad. A friend of mine gets cluster headaches and he offered me a few triptans to take with me on my trip, as a "just in case" kind of thing. I'm not sure though if they will be safe for me to take in case of an emergency while camping. Anyone can comment on that? I would really appreciate it!

8

I had remissions that lasted almost a year when it first started. Part of the reason it took 20 years plus to get a correct diagnoses. Yep it was sinuses, or maybe allergies, wait...bad teeth, migraines.......Once it became almost constant my Dr figured it out. He has a small family practice and currently has 4 patients with this....Might not be as uncommon as the experts seem to think. Might be a lot of people suffering under the wrong diagnosis.

9

Brian, et al: My personal observation from 20 years of talking with patients and professionals is that TMJ Disorder is over-diagnosed by dental specialists who lack adequate training in the assessment of neurological pain. Under the influence of dentists, some general practitioners jump to that conclusion too. And statistics for incidence rates in TN have been revised upward during the past 7 years by a factor of 300% (from 4 new cases per year per hundred thousand to between 12 and 22 cases). Even at the higher rates, however, many physicians in general practice will never see a case of TN during their professional careers.

Regards, Red

10

You should never take a prescription drug that wasn't specifically prescribed to YOU, downell... The Tryptophan drugs have some powerful side effects.

downell said:

Thank you everyone that have left nice comments on my posts!! I'm packing right now, and getting ready for a 10 day summer trip to the beautiful country of Norway. Couldn't be more excited !! I'm only a little scared cause at the moment I'm not on any medication and I'm not really seeing any doctors so I have nothing to take if the pain returns while I'm abroad. A friend of mine gets cluster headaches and he offered me a few triptans to take with me on my trip, as a "just in case" kind of thing. I'm not sure though if they will be safe for me to take in case of an emergency while camping. Anyone can comment on that? I would really appreciate it!

11

I know you are new to finland

Find lidocaine cream over the counter or prescription

Or something that can numb the nerves with…ask pharmacist

Thats what i used for emergency on trips!

12

Thank you KC, I will try that!! I am indeed living in Finland, just moved here and since I haven't had pain since 2011 I haven't seen a doctor about it so I have no meds or anything for emergencies and no official diagnosis "in Finland" so...

About the cream, I'm going to try and get it before I board the ferry (leaving in 1 hr) !!