I can't even express right what i'm trying to say-

General General TN & GPN (Old Site)
1

too exhausted... to despaired...have no soul strength to cope.

i'm taking the 90 mg Cymbalta for a while now.. i guess 3 monthes. which is quite a high dose.

i can't say this drug doesn't help. it helped. but it's far from enough.

again - i'm at a dead end. even when the pain in not EXTREME the feeling can drive me crazy.. like something digging or eating my gums.

i mean - i see that on few different pathes :

1. those with this disease the have a blood vessel shown - can do the MVD and maybe get well.

2. those who don't - can try the meds.

3. but when the meds aren't working suffiecenitly or partly.. WHERE CAN WE GO FROM HERE ?

i don't know where to go . in the first 2 years i went to 10's of doctors... 3-4 doctors EACH WEEK.

seems i'm stuck. didn't almost went to doctors for the last monthes.. . thought the cymbalta would suffiecntky help. but it doesn't.

i mean - what other caused than a blood vessel can CAUSE this horrific ATYPICAL FACIAL PAIN (after a dental work) and why can't something be done ?

i'm do young to declare my life as over.

2

I’m so sorry you’ve been struggling, I know it’s no consolation,…you’re not alone.
Together we must rely on each other and learn from each other, support each other.
I wish I knew the answers to all our questions.

Last night I stumbled upon a fundraising event on tv for cancer. I have been very angry lately ( due to never ending breakthrough pain non stop) that I ended up yelling at the tv " what about those of us with TN?"
I have friends who have lost their battle with cancer, my mom had cancer last year and is doing well, but despite ALL of that, I was in such a rage, and so mad that TN isn’t heard of, in the history of TN, we haven’t come very far in determining much about it, and I lost it!!!
Pain can make us not recognize ourselves, all those stages of grief, I flip flop between all of them, and yet I still somehow find hope…I guess I refuse to believe that this is it.
It breaks my heart that so many of us are suffering unable to find long lasting relief.

Do you have a doctor you can contact ASAP to adjust your meds? I hope you will find relief soon, take care of you, <3

3

My surgeon - learned MVD from the inventor- he does no longer do contast MRI - only has you do initial regular MRI to rule out MS.

That said - many do not find the compression until they are inside -- if you can find a surgeon who does at LEAST 30 MVDs per year - you can go for it!!! I did and 11 months later sooooo much better. I know that in 5 years I could need another - maybe not --- its a crap shoot! Roll of the dice!

Mine as you know was from whiplash from Oral Surgeon -- because the dental work was on opposite side of TN side. That is my only deduction -

I hope you find answers --- Have you ordered the book "Striking Back" by Dr. Ken Casey ??? He was my surgeon - it is our book here that many rely on

Have you tried Topical prescription Lidocaine -- saved my life while going off meds

Keep Posting!!!!

4

Nir,

Cymbalta is prescribed for mild to moderate depression, but it's not the drug of choice for TN or facial neuropathy. I think you need to talk with a Neurologist about Tegretol, Trileptal, Neurontin, the Tri-Cyclic Antidepressants (Amitriptyline, Nortriptyline).

Likewise, there is no such diagnosis as "atypical facial pain". What you've got is probably better classified as "Iatrogenic (treatment-caused) trigeminal neuropathic pain". So-called "atypical facial pain" is a garbage label, not a legitimate medical entity. It signifies "be damned if I know what you've got -- I just know you hurt" on the part of the doctor.

Go talk to your neuro about finding a more effective medication. There are many better suited to your treatment than Cymbalta.

Regards, Red

5

I completely get your desperation. Like Mimi said, we flip back and forth through the stages of grief. Yesterday I was definitely going through the anger stage again. I will tell you this: keep searching and don't give up. This site has helped me find so much more information. More information than any doctor ever gave me.

I hope you find a medicine or surgical treatment to help you. You know when you've given a medicine a shot and when it's just not going to work. Keep looking.

6

thank you all. i learn from ALL of you.

Mimi -i have a LOT (tens) of doctors - but not ONE i feel really i can call on time of trouble.

Kc - you always help ! i would take and do an MVD every 5 years.. if only it helped.

we have a surgeon here who claimed he saw something in my MRI and wanted to operate.

my symptoms are not classic with TN , and started after a dental procedure - thus - most likly the damge is local NOT on the brain - so MVD , logically won't help. but i don't know... no one can REALLY tell.

doctors here i guess don't have much experience on that. but i dont have mental strengeth to look for sureons in the US ... and don't have 75000 $ i hear this operation costs (my insutance won't pay for this abroad).

about the book - can it tell us of a magic "cure" we don't know about ? i mean - i thing i have 70% of the knowledge already. and no one can say FOR SURE if a procedure will work or not.

about TOPICAL - these days i put some unprescribed gel - it's 7.5% benzocaine ..it helps very very very little.

lidocaine - didn't really help in the past. i just made me uncompfortable in the mouth.

Red - here , in Israel, Cymbalta is considered a reletavely good drug for facial pain (talked with people that this drug helped them the most. even if not 100%). i admit - with this drug i'm better than i was 3 monthes ago - the pain was unbarable. but it's still not something i can live with... even if it's not pain - it's a really annoying feeling in theeth.

by the way - it helped my more than the Lyrica did.

about gabapentin - my doctor advised maybe to add this in the future.

the trouble is - these meds make you (me at least) more depreesed..,..tired.. and - doesn't make me totally pain-free.

i admit - my life is now like i'm dreaming.. i don't believe it's real.

that there can be such a medical thing.

i love you all.

7

Cymbalta isn't a mainstream drug of choice for TN in either Europe or the US, Nir. Recommend that you press for a trial course of one of the anti-convulsant drugs, possibly backed up by and reinforced by a tricyclic antidepressant like Amitriptyline. Naturally, any such trial should be tapered up gradually, as some patients do have problems tolerating such drugs. It may also be useful for you to see a psychologist or well-trained therapist at least weekly, to monitor for and characterize your depressive symptoms. Depression doesn't cause face pain, but it can certainly complicate treatment and make your life tougher.

Regards, Red

8

I am so sorry baby! Try to be strong! I know it hurts! It is a pain that just hangs on and refuses to relent to any normal meds or comfort. I use a warm rice bag and just try to rest. Pain has been hanging on without relief for all this summer. I go thru med changes which make me stupid and just was given the news there is no surgical fix at for me. YOU can do this if I can! HUGS

9

I was surprised to discover that one does not need a prescription to buy Tegretol in many foreign countries (outside the US for me). I bought extra in Mexico in case I ran out or needed more. VERY glad I did. I'm not sure how that might work in Israel. It seems to help the most for me, if I lower it, none of the others seem to matter much.

10

Drugs you purchase in Mexico may or may not be manufactured to any standard, RyGuy. There's a lot of variability even between manufacturing lots in that part of the world. I tend to encourage people interested in purchasing drugs across national boundaries to consider Canada rather than Mexico. Standards are better.

Regards.

11

I have to add, you can not buy them online, you have to actually go across the boarder and go into a licensed pharmacy. I have to say though, if anything, the drugs will be weaker verses as potent as expected (just in case that's a concern). And yes, there are drug manufacturing standards in Mexico, actually, the Tegretol I purchased there (non-generic) was made by Novartis, a leading manufacturer for U.S. medications, based in Switzerland. Please don't let "Gringo Fear" spread on this board like so many others (You don't see Mexicans dropping dead on the news from their local medical treatment...).


I was told today by my new neurologist that taking anything over 400mg of Tegretol daily can lead to toxicity. He put me on 200mg, twice a day (Extended release verse fast acting). Have an MRI (Dye contrast) scheduled for next week, he seems a bit worried there's a chance of an aneurysm and wants to be sure there's nothing to worry about with that. He said I could continue to take the Neurotin without worry, the one he was most concerned about was the one that seemed to help the most (go figure lol).

12

RyGuy, for a (relatively) few people, Tegretol can be toxic in almost any dose, resulting in bone marrow suppression or allergy. But you may wish to ask your neurologist where he heard the mythology that 400 mg per day is the magical threshold of effects. I've been working in this literature for over 17 years and I've never once seen that kind of data.

Regards, Red

13

Nir, hang on in there my friend. Remember there are other meds for you to try. xxx

14

Richard,

i've heard people had "bone marrow suppression" that started many years after tegretol. can it be detected in time ?

i've heard many people only found out about the damages to bones with tegretol after the damage was done.

can i person see or feel if such a side effect happens ?

or only when CT is ordered and done ? i wonder.


Richard A. "Red" Lawhern said:

RyGuy, for a (relatively) few people, Tegretol can be toxic in almost any dose, resulting in bone marrow suppression or allergy. But you may wish to ask your neurologist where he heard the mythology that 400 mg per day is the magical threshold of effects. I've been working in this literature for over 17 years and I've never once seen that kind of data.

Regards, Red

15

hi... thank you much. your caring always touches me

elstep said:

Nir, hang on in there my friend. Remember there are other meds for you to try. xxx

16

Bone marrow suppression normally affects red and white blood cell counts and immune factors. If it's happening, it will be quite noticeable in blood tests, in a relatively short time. The patient may also be aware of a deepening lack of energy, possibly flu-like symptoms, lack of immune responses to other diseases. These effects are estimated to occur in about 2% of long term users of Tegretol (see http://drugrehabtherapy.net/tegretol-side-effects).

Regards, Red

17

Nir I often think about the constant pain your in. I and others care about you and everyone else who is in the situation of constant pain as this could be any of us. My friend who has TN2 because of dental treatment now takes a cocktail of meds. Her pain is still present but like yours it is better then it was. She is trying the magnetic treatment that helped me, ( Red thinks it was the placebo effect) but I will let you know how she gets on.

18

Red. My new neuro (first one actually for this), nearly freaked out when I told him I was taking up to 1500mg a day of generic Tegretol (only effects I had really were a bit of dizziness and double vision if very tired). At that dose I could eat however. I will now probably have to order it online (not too happy about it) without a scrip (using a prepaid card, not my credit card) and hope for the best. I can't run to Mexico to get the stuff (though it's crossed my mind!). He also had no idea what I was talking about when I brought up the "FIESTA MRI" , he almost laughed when I said it.

Who knows, he seems good, and my Dr only refers me to those he feels are very good at what they do, so I feel a bit lost about it.

I forgot to mention, the reason I brought up the ability to buy it in Mexico without a prescription was because I thought it might be possible for Nir to find it where he is without a prescription (I know the pain he must be having and any info might help).

19

1500 mg per day of Tegretol is above maximum recommended dose, RyGuy. You're risking toxic side effects. And if your physician doesn't recognize the term "FIESTA procedure", then you need another doctor who is better trained.

The term FIESTA translates to Fast Imaging Employing Steady State Acquisition. See the Mayfield Clinic or similar sources for further info: http://www.mayfieldclinic.com/PE-TRIN.htm .

From the Journal of the Turkish Society of Radiology, the following quotation is pertinent:

"3D FIESTA sequences are superior to FSE T2W sequences in the imaging of cisternal parts of the posterior fossa nerves. 3D FIESTA sequences may be used for obtaining high-resolution MR cisternography images."

Regards, Red

20

Here is another recent abstract on the usefulness of FIESTA imaging.

Regards, Red

Magn Reson Imaging. 2012 Jun;30(5):666-71. doi: 10.1016/j.mri.2011.12.022. Epub 2012 Mar 9.

Preoperative demonstration of neurovascular relationship in trigeminal neuralgia by using 3D FIESTA sequence.

Zhou Q, Liu ZL, Qu CC, Ni SL, Xue F, Zeng QS.

Source

Department of Radiology, Qilu Hospital of Shandong University, Jinan 250012, China.

Abstract

PURPOSE:

The purpose of the study was to evaluate the value of high-resolution three-dimensional fast imaging employing steady-state acquisition (3D FIESTA) imaging in the visualization of neurovascular relationship in patients with trigeminal neuralgia (TN).

METHODS:

Thirty-seven patients with unilateral typical TN underwent 3D FIESTA imaging. Neurovascular relationship at the trigeminal root entry zone was reviewed by an experienced neuroradiologist, who was blinded to the clinical details. The imaging results were compared with the operative findings in all patients.

RESULTS:

In 37 patients with TN, 3D FIESTA imaging identified surgically verified neurovascular contact in 35 of 36 symptomatic nerves. Based on surgical findings, the sensitivity and specificity of magnetic resonance (MR) imaging were 97.2% and 100%, respectively. Agreement between the position (medial, lateral, superior and inferior) of the compressing vessel relative to the trigeminal nerve identified by MR imaging and surgery was excellent (K=0.81; 95% confidence interval, 0.56-1.00). A statistically significant difference was found between the site of neurovascular contact and the clinical symptom related to the trigeminal branch (Fisher's Exact Test, P<.001).

CONCLUSIONS:

Use of 3D FIESTA sequence enables accurate visualization of neurovascular contact in patients with TN. Anatomic relationships defined by this method can be useful in surgical planning and predicting surgical findings.

Copyright © 2012 Elsevier Inc. All rights reserved.

PMID:
22405984
[PubMed - indexed for MEDLINE]