Need Advice!

General General TN & GPN (Old Site)
1

Hello All,

I am new to the forum. I have had ATN since I was 12 years old - but only diagnosed 2o+ years later. So far I have been treated by my local physician. He now feels he is unable to help since this last episode has been intense and has cost me my job. Last week I met with the local Neurologist and I will not lie that he was a complete idiot. So with the help of my physician, I got in with another Neurologist today. This new one prescribed Lamictal on top of the Tegretol I am already taking. During our conversation I told him that being on medication 24/7 is not an option and that I was interested in surgery. He told me that at the age of 35 I am too young and that I had to live with this. So here are my questions: Should I attempt to see a new doctor? Should I give in to taking the meds and living with the notion that I will not finish school or even succeed in my career field? This last month my four year old has only seen me sleeping or lethargic - is this what she is supposed to expect from now on? Is it wrong for me to say that if I only have three options: 1) stay in pain, 2) take the meds, or 3) have surgery with the chance of cutting the nerve (and having numbness across the right side of my face) - I definitely would pick the last option?!

I apologize for my sarcastic tone of voice, but like my profile states “I am Over It!”

Thank you.

2

In several ways, you seem to be facing a "Hobson's Choice", between unpalatable alternatives. I've talked with others in very much the same position during the past 16 years of advocating for patients.

I think many physicians would give you the same advice as your doctor. However, I've also heard the opposite view from people in their 30s who insisted upon having an MVD and got successful outcomes. One of those people was George Weigel, co-author of "Striking Back -- the Trigeminal Neuralgia Handbook". I contributed to an appendix of that book, so George still knows who I am. If you wish, I can ask him if he's willing to talk with you about his own experience. If you want to have that talk, then send me a regular email address via ■■■■■■■■■■■■■■■■■■■

Your situation is complicated by being pain from ATN rather than Typical TN. Surgeries generally have a lower rate of success against pain which is constant, achy, burning, boring in character. However, if you have ever had a component of pain that is volleys of the electric-shock lightning strikes, I know of at least two neurosurgeons who would consider you a possible candidate for MVD.

All of the above being said, I must also respectfully correct you on one point. Having the nerve cut in a deliberate neurectomy or partial neurectomy is considered by most neurosurgeons to be a high-risk last resort whose consequence can be far worse than numbness. If your central nervous system tries to route its impulses "around" the lesion created by a nerve section, you can end up with deafferentiation pain which can be much more severe than what you have now. Likewise, about 10% of those who receive MVD are affected by Anesthesia Delorosa, another very severe and difficult to treat pain syndrome. So the risk factors are significant in surgery. It's a Hobson's Choice.

Let me know if you'd like me to try to set something up with George.

Go in Peace and Power

Red

3

Hello Red,

Thank you for the quick reply. Since I am quite interested I have ordered the book - let me read it first and then more than likely I will have more informed questions to ask George.

The best way to describe the pain I go through is: Imagine someone sticking a knife into the side of your face and someone continuously taking a sledgehammer to it non-stop.

Tomorrow I have my MRI scheduled. The last one is 3-4 years old. My parents (bless them) have become advocates on my behalf. My mother has called a neurosurgeon in Indianapolis, who wants to see all my records and the new MRI. Hopefully, I will see him before I can no longer make my Cobra payments.

Also, today's Neurologist has drawn some blood work to check my Tegretol levels. I am just very uneasy taking the Lamictal. My "follow-up" is 8/1/11. If i don't take the medicine it makes no sense to go back to him......

Thank,

OverIt

4

When you have the MRI, ask about the details of the procedure they intend to use. The "gold standard" of practice for facial pain patients is 0.66mm thin-slice MRI with special processing in a "trigeminal protocol" (possibly also known as "FIESTA" MRI). It should be performed both with and without contrast agent, and processed after the procedure to generate a 3-d projection image.

Do let us know how you come out...

Regards, Red

5

Thank you Red and Jackie for your replies.

I did receive the book and read it all in one sitting :-) It was like someone was writing a book about my life. The explanations were very helpful. One thing I have to point out is that it is a shame people are trying to make a fortune selling this book on Amazon. I tried to get it through the TN Association but they are no longer selling it.

I have my appointment today with the Neurosurgeon and I feel I am more prepared to ask questions. Staying on these meds is not a solution. I have been working too hard to maintain a 4.0 at my University and I was to sit for LSAT in October, which I now have obviously postponed to the spring. I just refuse to give up my dream of becoming a tax attorney. My current professors have been great and have seen what type of student I am before this last onset of pain. Luckily I have worked ahead and had submitted 75% of my work already. They are allowing me to turn work in as I can get it done. I am not so sure I am going to have this option for the fall semester.

Anyway I will cross my fingers. Appointment is at 3:30PM today........

6

Please let us know how your appointment goes. I am in a similar situation as you - diagnosed at 27 and I have a toddler to take care of. I have refused to go on medications for the reasons you have stated (lethargic, sleeping, etc) and would rather deal with the pain, not eating, gently brushing teeth, etc, for the sake of spending quality time with my husband and daughter. I have heard of experimental therapy where there is botox injected into the nerve, but my doctor said this is too experimental at this point and wants me to just go on meds (trileptal) - he said that is the first starting point. He also said that some patients are pain free after taking a 3 month course of the meds and they never have to go back on them - I kind of don't buy it, but wonder if anyone else has also heard this. I think I can manage 3 months feeling like a zombie, but not more than that...

7

Not all patients have such severe side effects as you seem to be forecasting for yourself, Danielle. My wife has been under management with 2700 mg of Neurontin per day for over 10 years, and has very few side effects -- certainly not the lethargy you describe. My STRONG advice would be to do a trial of the medication recommended by your doctor, let your body acclimate if it can, and see where it takes you. If the lasting effects aren't satisfactory, then you can try a different med.

There are no one-size-fits-all solutions here.

I have never met a patient (that I can remember) who went on meds for three months, got the pain settled down, and then never had to take them again. Not one. And I've talked with almost 3,000 patients during the past 16 years.

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

8

Thanks, Red. I appreciate your advice. I also worry about starting meds because I hope to become pregnant in the next year - I worry that meds will prohibit me from doing this - what do you think? In your experience, how many patients have you talked with who have had little to no side effects from meds (particularly Tripletal) - it seems everyone on all the forums talk about the terrible side effects, though this could be biased since people with no side effects don't feel the need to reach out to discussion groups. Also, what do you know about nerve blocks/botox injections into the nerve. Could this be an alternative route to daily meds, or is this riskier than taking meds? Thank you - I am so glad I have someone to ask advice and share my concerns with.

9

Danielle

The anti-seizure meds are a definite hazard to pregnant women and their unborn children. Some of thee meds have a record of association with birth defects. You'll need to talk with a physician to get a truly authoritative answer on the particular meds and their known incidence of ill effects in pregnancy. The following extracted (e.g. partial) comments are offered at rxlistg.com for Tegretol, as but one example:

========================

Usage in Pregnancy

Pregnancy Category D (see WARNINGS).

Labor and Delivery

The effect of Tegretol (carbamazepine) on human labor and delivery is unknown.

Nursing Mothers

Tegretol (carbamazepine) and its epoxide metabolite are transferred to breast milk. The ratio of the concentration in breast milk to that in maternal plasma is about 0.4 for Tegretol (carbamazepine) and about 0.5 for the epoxide. The estimated doses given to the newborn during breast-feeding are in the range of 2-5 mg daily for Tegretol (carbamazepine) and 1-2 mg daily for the epoxide.

Because of the potential for serious adverse reactions in nursing infants from carbamazepine, a decision should be made whether to discontinue nursing or to discontinue the drug, taking into account the importance of the drug to the mother.

WARNINGS

Usage in Pregnancy

Carbamazepine can cause fetal harm when administered to a pregnant woman.

Epidemiological data suggest that there may be an association between the use of carbamazepine during pregnancy and congenital malformations, including spina bifida. There have also been reports that associate carbamazepine with developmental disorders and congenital anomalies (e.g., craniofacial defects, cardiovascular malformations, hypospadias and anomalies involving various body systems). Developmental delays based on neurobehavioral assessments have been reported. In treating or counseling women of childbearing potential, the prescribing physician will wish to weigh the benefits of therapy against the risks. If this drug is used during pregnancy, or if the patient becomes pregnant while taking this drug, the patient should be apprised of the potential hazard to the fetus.

Retrospective case reviews suggest that, compared with monotherapy, there may be a higher prevalence of teratogenic effects associated with the use of anticonvulsants in combination therapy. Therefore, if therapy is to be continued, monotherapy may be preferable for pregnant women.

In humans, transplacental passage of carbamazepine is rapid (30-60 minutes), and the drug is accumulated in the fetal tissues, with higher levels found in liver and kidney than in brain and lung.

Carbamazepine has been shown to have adverse effects in reproduction studies in rats when given orally in dosages 10-25 times the maximum human daily dosage (MHDD) of 1200 mg on a mg/kg basis or 1.5-4 times the MHDD on a mg/m² basis. In rat teratology studies, 2 of 135 offspring showed kinked ribs at 250 mg/kg and 4 of 119 offspring at 650 mg/kg showed other anomalies (cleft palate, 1; talipes, 1; anophthalmos, 2). In reproduction studies in rats, nursing offspring demonstrated a lack of weight gain and an unkempt appearance at a maternal dosage level of 200 mg/kg.

Antiepileptic drugs should not be discontinued abruptly in patients in whom the drug is administered to prevent major seizures because of the strong possibility of precipitating status epilepticus with attendant hypoxia and threat to life. In individual cases where the severity and frequency of the seizure disorder are such that removal of medication does not pose a serious threat to the patient, discontinuation of the drug may be considered prior to and during pregnancy, although it cannot be said with any confidence that even minor seizures do not pose some hazard to the developing embryo or fetus.

Tests to detect defects using currently accepted procedures should be considered a part of routine prenatal care in childbearing women receiving carbamazepine.

There have been a few cases of neonatal seizures and/or respiratory depression associated with maternal Tegretol (carbamazepine) and other concomitant anticonvulsant drug use. A few cases of neonatal vomiting, diarrhea, and/or decreased feeding have also been reported in association with maternal Tegretol (carbamazepine) use. These symptoms may represent a neonatal withdrawal syndrome.

To provide information regarding the effects of in utero exposure to Tegretol (carbamazepine) , physicians are advised to recommend that pregnant patients taking Tegretol (carbamazepine) enroll in the North American Antiepileptic Drug (NAAED) Pregnancy Registry. This can be done by calling the toll free number 1-888-■■■■■■■■, and must be done by patients themselves. Information on the registry can also be found at the website http://www.aedpregnancyregistry.org/.

=================

Remembering that I tend to talk to the same patient populations that you see on a forum like Living with TN -- and therefore, people who are having problems -- the number of folks who have little or few side effects in this population is clearly not a majority. However, the trials data published at places like rxlist.com offer a better insight into the effects that occur most commonly, and how often they occur. There is a section of several pages of notes on side effects on the drug Tegretol. I'd suggest reading the rxlist.com materials on drugs you are now on, and discussing them with your physician.

Regards,
Red

10

Hello Over,

My history has quite a bit in common with yours, and what I found about half way through my current four-decades-long (so far) battle, is that if you ask long enough and hard enough, you will probably find a doctor who will cut you. I'm sorry that I found one.

In my case, it was a "suspected herniated disk with bulge at c5/6" and so in 1992 I had a cervical (c-spine) operation that did nothing but make life a whole lot worse. Today, I know that it was foolish to operate on my c-spine for 'jaw' pain, but at the time, I simply thought that the MRI (my fourth at the time) had finally found the cause of my pain.

After the surgery, I was never the same, and ultimately I lost my marriage, the house, the job, the career, and most of the will to go on. And yet today, I would probably gladly go in for an "exploratory" decompression or gamma knife, if they would offer it. Since I have the diagnosis of ATN (which incidentally came years AFTER my neck surgery), the latest MRIs do not indicate enough for any doctor to want to "dive in there" and I'm probably better off that I don't beg them to do so like I did two decades ago. I still go in every two or three years and look at the latest procedures, and hope that someday, "they" will catch up with what ever it is that is wrong with "me."

The fact is, even though a condition does not "get better," this doesn't mean we can't "get better" at managing it. Even though I am no longer working, and I am alone 99% of the time, and I lack exercise and any semblance of a "normal" social life, I fight back very hard. When I was twenty, I supposedly took too much medication, and I have doubled that and doubled it again, and a lot of the battle is just accepting that this is what works, and I don't apologize for it (any more) or let it bother me in the least, at least not in this respect.

Some day I'll probably have a good laugh and realize that the past forty years of my life has not been worth living, but frankly, I'm too busy right now to think about that. I'll miss my own son's wedding this month, and I couldn't make it to his Mother's funeral, but I did manage a short trip a few years ago, and maybe in a few more years, I'll give it another whirl. You do what you can do with this illness, and aside from this, there's no shame in what we can't do. Sometimes, just a smile can carry me through an entire month.

And who knows, maybe they will come up with a cure or a procedure that will help us one day, but we cannot use all of our waking energy looking for that elusive cure. Sure, spend some effort on that, but also, I believe that we must save some of our time and energy for fighting and coping with this illness. Getting worn out by constantly being frustrated by "yet another poor doctor," or another dead-end procedure, is the surest way to use up all of our reserve energy, and that can quickly lead to a loss of the will to go on. Don't go there.

You're message is that of someone looking for a destination, and I cannot tell you if you will find it or not. I know that I am still looking, but I no longer spend all of my waking energy JUST looking. My primary goal is simply the quality of the journey I might have left in me, be that twenty more hours or twenty more years. I no longer need to be "cured or else." A life defined by severe pain is not something any of us would choose, but in many cases, it seems to have chosen us. Manage it, and get good at that. Rinse and Repeat! A little improvement or progress in how you handle or cope with this illness goes a very long way, so I recommend that for people like myself (and this sounds like it could be you) make this commitment toward an improved management of our condition the primary focus.

We must never forget those words uttered by that famous football coach, John Wooden, who said, "Do not let what you cannot do interfere with what you can do." Carry On! (jqt)

11

Fantastic words John