For the newly diagnosed

General General TN & GPN (Old Site)
1

I would like to share some advice based on MY experience, all that I am about to write is strictly MY opinion… I would also like to ask the rest of you who have been Living with TN for a length if time to offer your advice…
Please remember we are NOT doctors, we can only suggest based on our experiences, and everyone should ALWAYS consult their doctors first prior to making changes.

Being diagnosed with Trigeminal Neuralgia can be very scary.
First, most of us have never heard of it and can barely pronounce it and initial literature often quotes it as also being called “tic douleroux” or “suicide disease”.
Say what? Tics? Suicide?
Those terms should really be eliminated in my opinion.
They just provoke fear and are not necessary unless you are reading the history of TN. Back in the early days, prior to meds there was little that could be done to relieve pain hence the reference to suicide. The expressions are face makes when experiencing the shock like pain resembles someone who has tics. If you’ve ever experienced 10/10 TN pain, you’ve been on your knees begging for mercy, for relief. TN pain is indescribable.
We don’t need to say suicide disease we need to say worst pain known to man.

That out of the way, we all have different pain thresholds, we all experience our TN differently, there are similarities, but very rarely will you find two people who from start to finish experience the same course of TN, respond to the same meds, doses, alternative therapies etc.

It is most important in my opinion to read and research as much as you can, we are very fortunate in this day and age to have access to the Internet to be able to access much information as well as find places like this for support.
That being said, we must ensure that we take what we read with a grain of salt so to speak.
Most support groups like these, the majority of users are people who’s course with TN is not managed well. We are very fortunate to have several members who’s TN pain is controlled by meds, surgery, other procedures as well as alternative therapies. They very graciously stay here to offer support and encouragement rather than leave and move on. I am so grateful to them. :slight_smile:

We need to understand that MANY people are able to live full lives with TN.
I did for just over 2 years.
Remissions aren’t just possible, they are frequent for many.
I personally experienced an 8 year remission. It can happen.

I also think its very important for us to understand that we should NOT have to suffer. If your pain medication is NOT adequately covering your pain, you NEED to talk to your doctor/specialist as soon as possible to discuss what can be done! Whether that be an increase in dose, adding a new med, alternative therapies etc etc whatever!!

Pain wears us down, it also takes time to find what works and yes many of us can’t seem to find that magic potion/equation for a long time but we must try.

Many of us have difficulties getting a diagnosis, and also finding a medical professional that is up to date on treatments for TN. We soon realize we need to advocate for ourselves.

There are many emotional side effects. We need to connect here with others and support one another.

So to our newly diagnosed,

  1. find relief for your pain, understand the meds take time, please have a plan in place with your doctor on how you can increase at home and in what time frame if the dose isn’t working.

  2. look up your medication know the side effects, don’t assume you will encounter them, just be aware. There are many reputable sites online to do this.

  3. find a doctor/neurologist that understands TN or is willing to read and be up to date on TN in order to help you. Someone who is supportive.

  4. research and read as much as you can, but keep an open mind. TN is very unique to each of us, although we share similarities it is different for each of us.

  5. be active in your pursuit of a pain free existence, don’t settle for less.

  6. understand there are emotional side effects, try not to be to hard on yourselves, it’s a process, for most of us a work in process.

  7. share and ask questions, vent, be part of this community it is so valuable to have a place where we can feel safe and be with people who truly understand what it’s like Living with TN.

  8. HAVE HOPE…

Of course there’s much more, but I welcome advice and tips from others to this thread.

(( hugs)) Mimi

2

My top 4 would be

1. Research treatments or have somebody do it for you - lotssssss of research - and include the book Striking Back- by Dr. Ken Casey---Then when you go see a doctor, or four, you can have copied stuff off for them in case they need more info.

2. Many large cities now have 24 hour pharmacies --- Utilize Your/Any Pharmacist --- don't wait for the Dr. office to open if you are in pain -- or having bad side effects--- you may need to go to ER - Do NOT stay in pain until you can get an appt. !!! If you have to call a pharmacist in the next state over - do it -- they readily answer questions!

3. If your doctor does not listen to you - tells you there is no hope -- is negative, condesending, rude, neglectful -- FIRE the doctor! You may have to go farther than just your town. Find one WITH TN patients. We are 12 in 100,000 so that is a needle in a haystack!

4. Topical/Oral relief with compounds from special pharmacy, lidocaine, mouthwash, nosespray, cream, patches - there is a whole group dedicated to this

immediate pain relief under the groups tab above. Besides my MVD - these were lifesavers to me.

Kimberly

3

Thanks, Mimi. Wonderful advice. I totally agree! I had never heard of TN until my diagnosis. I had no idea what it was until I came home and researched it. When I read "suicide disease" I became pretty upset. Thanks for the clarification. The pain mgmt is the worst part for me. I feel odd asking to increase my meds, but I decided to call my neuros office on Friday to find out when an increase might be neccessary....knowing it takes time for it to work. This community has been a great source of information and understanding for me. Thanks for your compassion!!

4

Thanks Kc! Great advice!
@ longtobepainfree, thx, I hope it’s helpful!

5

Mimi! This is an excellent piece. Thank you for putting it up! I totally agree with all you have written. So many jump on the term "suicide disease", it is history now and should not be thought of in relation to TN today as you say so well. In 2.5 years in the group there has been no case of the S word that I know of. And again as you so rightly say that is because of all the help available nowadays.

I think that because of the unique set of circumstances that TN presents a group like this is vital, nay necessary to help us all cope.

Thank you


6

Mimi, this is brilliant and I really hope that newbies to TN do see this and get to read it as I think it will be really helpful for them, I think it's also probably very helpful for a lot of people already diagnosed too! Either way, well done for both thinking about it and then doing it!

Thanks for adding your input too Kimberly, all this is great advice.

And Jackie, I'm just loving the cow ha ha!

7

This is wonderful!

I've always had periods of remission as well. Sometimes months, sometimes a year. I go completely off meds in between (with my doctor's support) because I find that I need fewer pain meds during the flareups. It makes it a lot easier for me to cope with the side effects and I hate taking pills.

I think the term "suicide disease" sets people up with an unrealistic expectation for what they will encounter. When I start having pain again, I feel that same "end of the world, this isn't going to stop until I die" feeling that we all share, but once you learn the routine of getting back on meds and slowly increasing your dosage (with doctor's help until you get good at it), it really isn't so bad for probably the vast majority of us.

It doesn't have to be a life sentence or disabling for everyone. You can still be a good parent and/or spouse, it will just take a little more effort sometimes. You will probably be able to hold a job, but it might change your career track a bit. Don't disable yourself unnecessarily, but be aware that you could possibly find yourself technically disabled.

An interesting read for those just starting on their journey: http://emedicine.medscape.com/article/1145144-overview

8

Mimi and Dancer,

I would add my agreement that these tips are well chosen for newbies.

I have long considered the use of the term "suicide disease" to be unfortunate and disproportionate -- and the US TN Association has been one of the most consistent culprits in that error, if from the best of intentions. They have been working 20 years to raise visibility and generate a sense of urgency for face pain. But as horrid as this condition is, it is rare for patients to get so depressed that they give up -- and sites like ours are helping to make that outcome even more rare.

As a (minor) FYI, the term "tic deloroux" means literally "terrible spasm" -- and it refers to a symptom which is even more rare than the pain itself. Some patients have a combination of TN in the 5th cranial nerve and hemi-facial spasm from vascular compressions of the 8th -- which can indeed cause sudden convulsive distortions of the facial muscles. 400 years ago, such spasms were first recognized as one of the few reliable confirmations that a patient was actually physically affected, rather than mad. Until this distinction was recognized, it was not unusual for tic patients to end their days in places like Mayhem, with other people who were still thought to be "possessed by demons".

As a further basis of hope: when I first began writing on face pain for the TN Association in 1997, the search engines of that time typically logged about 3500 document "hits" on the term "trigeminal neuralgia". This morning, Google registers 2.24 Million hits on the same term. Likewise, studies done by the Pew Institute indicate that over half of all patients with major diseases (cardiac issues, diabetes, lung cancer, stroke) or their families will research their symptoms BEFORE being seen by a physician. Many of our members report a similar journey.

In part from that explosion of visibility, our website now receives over 25,000 visits per month. We are also having a significant influence on patient and professional knowledge of the disorder, through the pending acceptance of our TN Fact Sheet for publication by the US National Institutes for Neurological Disorders and Stroke. The article which I wrote on atypical trigeminal neuralgia at Wikipedia comes up as number one in the stack at Google for searches on that term, while one of the articles in our Face Pain Info menu tab comes up 10th for the term "atypical facial pain". Our site demographics studies are beginning to put physicians on notice that they should be looking at TN as a potential diagnosis in patients much younger than they were trained in med school to expect.

Mimi, thanks for thinking to start this thread. And feel free to ensure that it remains "featured", if the rest of us forget to do so...

Go in Peace and Power

Red

9

Regarding the whole “S” word, for me, it wasn’t until I hit a 10/10 pain that lasted 13hrs straight recently that I understood why people contemplated…of course I would never! But this episode brought me to my knees, and I was desperate for relief… begging for mercy from a higher power. It took 2 days just to recover from that day…

I just don’t want people to feel that I’m diminishing their pain by removing the “suicide disease” label from my vocabulary. We do have meds, in my case they’re not working for me anymore…the constant pain wears me down but there is always hope.

Also I don’t want those newly diagnosed to get stuck on that term, because in many situations TN can be managed with meds or other treatments to allow for a functioning life.

My TN was well managed on just 800mg Tegretol XR for the longest time…



In any event I also don’t want this thread to be just about the use of the “S” word, I just think it would be great if some of us could share tips, links etc that may be helpful to someone just starting this journey.



When I was first diagnosed in 2002, I found the following website very informative and who knew 10 years later,this neurosurgeon would be performing my MVD in 2013?

(I am NOT promoting MVD. It’s a very personal decision that should be well researched when meds are no longer effective,with your doctors support and many opinions from different surgeons.)

The website is a great starting point for someone new to TN.



http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscr…



Thx for the support for this thread, I look forward to reading all the tips and advice, I learn so much each day from this great site… <3

10

It's been a few years since I visited the Manitoba site. I shall make a point of sending them our demographics studies. Another which covers this territory and also provides extensive patient narratives and stories is http://facial-neuralgia.org/

Like Dr Kaufmann's work at Manitoba, the facial neuralgia site has not recently been maintained, but is still quite useful and well organized.

Regards all,

Red

11

I've just posted the following letter to Dr Kaufmann at University of Manitoba:

Dear Dr Kaufman,

I write as a resident research analyst and moderator for a patient to patient support community on the Net, known as "Living With TN" (http://www.livingwithtn.org). We are one of several communities served by the Ben's Friends group for rare and orphan disorders. We have grown from 1200 to 3200 members in the past three years, and are adding members every day. Your site ( http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/index.html) has recently been favorably mentioned by another of our moderators as a good place for newly diagnosed patients to visit. We will link to your work from our external resources page, and invite you to cross-link in return.

In a spirit of collaboration, I would also like to offer two papers on the demographics of facial pain that have grown from analyses of our member database. These papers suggest a need for revisions in the training of both medical general practitioners and dentists, to better recognize the potential for neurological causes of face pain in younger patients. Your comments are invited and welcome.

Sincerely yours,

Richard A. "Red" Lawhern, Ph.D.
Resident Research Analyst and Moderator
Living With TN

12

That’s awesome Red!
Thankyou, the more people/places we can reach with your valuable updated information/ demographics the better informed everyone will be. I think it’s imperative.
(( hugs)) Mimi

13

Bump!

14

More tips;

Heat to Comfort;
A reheatable bag called “the magic sack” , place in microwave for a few minutes, helps take the edge off the pain. There are several different types of heating bags, I like this one because it is longer, can wrap around face for relief.

A Plan for Pain Crisis;
Have a plan in place with your doctor for breakthrough pain. Whether that means knowing you can increase your dose of med and how to do so with your doctors direction or having a seperate med for when your pain increases.

Organization;
Start a 3 ring binder with dividers that have pockets and lined paper. Keep track of all your referrals, medication info and test results.
I also keep a simple log of my TN. Example:
Nov.29/2012 pain hit 10/10 for 13 hrs
Dec.12/2012 saw neuro, added Dilantin, discussed upcoming MVD.

I have found this binder so helpful, when you are on high dose meds you become forgetful and can misplace things. This keeps everything in one place and organized. When I am seeing a new doctor, I simply take out a few pages of my log for reference for my appointment and then put them back afterwards.

A Pill Organizer;
Due to forgetfulness ( again thanks to the meds) I bought a 7 day a week 3x a day pill organizer. Each day has morn/ noon/night and each day can be removed to place in your purse. This has been a great purchase, so many times I’ve forgotten whether or not I took my meds ( I take mine 3x a day) now I can easily tell.
Some of my girlfriends had a laugh seeing my pill organizer, told me it reminded them of their grandparents…I wasn’t offended, I just explained the whys and how these heavy duty pills cause me so many side effects, etc
Funny though, I don’t think if the situation were reversed I would have laughed…

(( hugs )) Mimi xx

15

More good stuff Mimi! I also have a pill organizer, no shame in trying to remember to take our meds! I also set my phone to alarm and remind me three times a day.

16

Oh this such a great thread. I agree with much what has been stated already. I will have to think of some things to add for this.

Few quick things though.

  1. There many different stages of grief you may go through. Nobody goes through these quickly and all emotions you may feel are normal.

  2. Know your medications and state laws about these, federal too. I know this may sound funny but it is important. Some medications can get you in trouble if you travel with not in the prescription bottle.

  3. Keep trying to find relief and develop a good relationship with at lest one of your doctors. You may see these people a lot and they are throng to help you. If your not comfortable or not getting help from a doctor start looking for a new one.

  4. Talk with your loved ones about you both are going through with the journey of tn. It affects them just as much as you.

  5. Try to find some humor with illness, laughter is good medicine.

  6. Figure out what to do in emergency before one starts this includes dental and natural disasters. You don’t want scrambling at this times, I have and it stinks.

6A figure out how to communicate with your doctors when you can not talk. One of doctors gave me an email for such times this happens for example.

  1. Be kind to your self and accepting of the new you with TN. This can be hard at times and its a work in progress for all of us.

  2. Find things to be greatful for having TN. This sounds weird I know. But tn makes you appreciate what you can do and the time when you can go out with family and friends.

  3. Not everybody is going to understand you and tn. Don’t try to force people to understand just accept it and appreciate those who do more.

17

I can only applaud the suggestions made by Kari and Mimi. Some of these are reflected in our article on "Coping With Crisis". Likewise, I encourage all of our members to download, print-out and FILL out our form titled "Attending Physician Advisory" for times when they need to be seen by a doc and can't communicate clearly or remember all relevant details. Links are in the Face Pain Info cluster on our menu above. I would also suggest a reading of "The Spoon Theory", in a different discussion thread. The thread can be looked up in our search window at the top right, but the original article is at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Go in Peace and Power

Red

18

How do you find a doctor who understands TN. My doctor(s) have prescribed antibiotics, prednisone and other drugs by assuming it is somehow sinus related. I have been to a dentist and endodontist in hope that it was tooth related. I live in a small town where there a few options when it comes to doctors. Any suggestions? By the way I live in Sequim WA

19

Bilin, you would need to find a neurologist, but I am not familiar with your area, since I am in West Texas. Here are two links for neurologists. I don't know if they still work:http://www.localtom.com/wa/sequim/bednar-marlene-md-bednar-marlene-md-17551274.html which is a Dr. Bednar, and http://www.healthgrades.com/physician/dr-jack-hutton-2g9fk which is a Dr. Hutton, but I think Hutton is in Port Townsend...IS that really even close to you? You can contact the state neurological society http://www.washingtonneurology.org/ , and see if they have any listings close to you. Another possibility is to contact one of the large hospitals like Johns Hopkins or the Mayo clinic and be worked up there as an in patient. I have had family members do that for other illnesses. That is, if you have insurance to cover that. Most of us have had to go through being treated for other things first, before TN becomes the final diagnosis. It is frustrating (and painful) but since there is not exactly a one stop test for TN, it happens. Often it is diagnosed by finding out what it is not first. I hope you can find a neurologist near you. Most should be familiar to some degree with TN, especially since MS and TN are kissing cousins to some degree. So sorry you even have to deal with this, but I can honestly say that to everyone on here. Let us know if you find someone.

20

Thanks very much, I will check this out. I heard that a Neurologist just started in Sequim.



booklass said:

Bilin, you would need to find a neurologist, but I am not familiar with your area, since I am in West Texas. Here are two links for neurologists. I don't know if they still work:http://www.localtom.com/wa/sequim/bednar-marlene-md-bednar-marlene-... which is a Dr. Bednar, and http://www.healthgrades.com/physician/dr-jack-hutton-2g9fk which is a Dr. Hutton, but I think Hutton is in Port Townsend...IS that really even close to you? You can contact the state neurological society http://www.washingtonneurology.org/ , and see if they have any listings close to you. Another possibility is to contact one of the large hospitals like Johns Hopkins or the Mayo clinic and be worked up there as an in patient. I have had family members do that for other illnesses. That is, if you have insurance to cover that. Most of us have had to go through being treated for other things first, before TN becomes the final diagnosis. It is frustrating (and painful) but since there is not exactly a one stop test for TN, it happens. Often it is diagnosed by finding out what it is not first. I hope you can find a neurologist near you. Most should be familiar to some degree with TN, especially since MS and TN are kissing cousins to some degree. So sorry you even have to deal with this, but I can honestly say that to everyone on here. Let us know if you find someone.