Return of pain

Symptoms & Treatments Surgery
41

'I know, ModS, although it might be a lot higher than 5%. Like everything else on TN, there really isn't the research to back a definite figure up. I discovered the genetic thing a good while ago and actually ran a poll on here for how many people had a genetic link, because I didn't believe in it. At all. I was sadly disillusioned because at last count (it should still be on here somewhere, I think) it was about 50% of sufferers here had a relative, and sometimes several, with TN. You could have knocked me over with a feather, because as far as I knew no-one in my family had ever had it.

A while after that, however, I suddenly remembered a cousin who was supposedly plagued with 'bad headaches'. I remembered that she committed suicide round about when she would have been in her 50s or 60s. Ever since then I've been convinced the poor girl had TN (she was a girl when I last saw her!). So it looks like I may have had my relative after all.

The idea that TN might actually be a trigger is a fascinating one. Just as an aside, I haven't had this much fun on the TN forum since forever - thanks for all the new ideas! Sometimes it feels like a desert to me - just more of the same with no hope. It's great to have new avenues to explore. So here's a thought on TN as trigger - how many of us have things going wrong that we attribute to the meds, or that are being confused or covered by the meds, that might actually be TN related? Just putting it out there!

ModSupport said:

About 5% of TN is genetic though..... An interesting read BTW is the Koebner Phenomenon thought to trigger some arthritis. I wonder some times if TN doesn't trigger other things some have a genetic predisposition for like your joint issue

Woman with the electric teeth said:

I'm sure you're asking Mod, not me, Aiculsamoth, but yes, you need a trigger for a genetic predisposition. It's usually an environmental trigger, like diet or lifestyle. Some genetic diseases, though, are foregone conclusions, no trigger required - but TN isn't one of those, I'd say.

aiculsamoth said:

Not suggesting you know the answer, if the purpose of myelination, in addition to conduction is protection, nature being pretty clever, why is central myelination not seen along the whole of the sensory root? Because it isn't, to me it would suggest more of an 'overspill' from the CNS , peripheral to central what would be is it's role? I know very little about it but regardless of genetics I understand the majority of genetic manifestations outside of birth (maybe even then) require a trigger, epigenetics or something similar?

42

I had been taking lots of meds and was getting so tired of the fact about every year we had to increase them, so in the summer of 2014 I had the MVD and this seemed to really work and I was excited about this. I also was doing so fantastic that they had me ween off of the meds. I was only taken one pill 1 time a day. This was a dream come true. Then I went back to work and by the 3 month back to work I was taking all the meds again at full about of 8 pills 4 times a day. I finally have taken a leave of absence and trying to get it all under control. I have identified the triggers that make it really bad and for the most part I can get ahead of it by sitting in the dark and it being quiet and my eyes closed. The key for me is my eyes closed. So far I haven't had to take meds for depression cause I am determined to not let me get down. I surround myself with positive up lifting people, music, and everything I do. I know also staying on this site helps me to learn from others and their adventures. It will help you identify symptoms before they become a rough day and it gives you hope. Lots of prayers for you and encouragement Dee

43

I hear you, butterfly. I'm currently in what is, hopefully, remission, but my doctor put the fear of death in me so badly about coming off meds, I am afraid to do it. I am now down to only 100mg of Carbamazepine a day and I am about to make the giant leap off it completely next week. But right before winter? I can tell you, it's taking every ounce of courage I have!

butterfly49 said:

My pain comes and goes. I went several months without any pain although I stayed on 300 mg of gabapentin. Then while in Europe in the cold weather, it came back and despite being on pain meds, I had pain again for 5 months. Then out of the blue, pain has gone away again. I am clueless about what causes episodes but I take those pain free days any time I can get them. I am afraid to not take my meds for fear I will get the severe pain when it was onset.

44

Hi! The day after my diagnosis I started anti-seizure meds. After two days I got off, I couldn’t handle the way I felt. About a week later I began taking gabopentin. But rather than twice a day I only took it once. I actually quit taking that two about two weeks ago. I just can’t stand the thought of taking meds like that for the rest of my life especially since they really don’t help that much anyway. I don’t know if that helps or answers any questions… justy input.

45

Well, Aiculsamoth, MS is a 'straightforward' demyelinating disease, as in that's the major cause/result of the condition. The fact that TN does occur with it gives it at least a strong correlating link, since TN only occurs with two conditions that I know of: MS and shingles, also a nerve aggravating/destroying disease. Interestingly, I've never looked shingles up to see if any demyelination is thought to occur there. If it did, that would certainly strengthen the correlation. Actually, it would be a very interesting thing to do, to compare those two diseases and see if they have any common bonds - maybe if there were any it would give a clue to what causes TN.

aiculsamoth said:

We know MS individuals have an increased risk of tn, but it does not mean it is due to demyelination, despite research which does not take into account the lifestyle of a MS patient and associated factors, MS patients whilst having a larger incidence of TN it is still rather small compared to the general population which could be a factor of any number of reasons. Unless of course there is research to the contrary.

46

I tried to read and understand this discussion, but it's all Greek to me. I need plain English or at least a better explanation of what these people are saying. The originator's question seems to be - "could taking Tegretol or other meds for TN actually retard the body's ability to heal itself?" That's a fair question, but I don't see any answers to it here.

47

Hey Sandy, I'm offended! LOL I did answer it way back at the start - thank you very much. But here you go again, Yes, Tegretol could, theoretically, affect your body's ability to heal itself simply because it affects the body's metabolism so badly (for some hypersensitive people). I'm one of them and Carbamazepine has given me neutropenia (low white blood cells), hypothyroidism, erythema multiform (an allergic rash) and low blood sodium, which landed me in hospital. So yes, once again, it could definitely stand between you and healing, in theory. But it's either that or be in pain.

48


wwtet,

I realise MS is a major demylinating disease, but my question which remains unanswered is why a little bit of myelin sheaf towards the REZ affects, if at all, sensory pain input from the face, bearing in mind we have changed epineurium to myelinin over approx. 3mm, for what reason? Nerve impulses aren't coming back in the same direction The interior of the nerve root remains the same, mylinated/ unmylinated nerves, I would have to say at this point it means little. Is the incidence of TN in MS individuals significant? with the electric teeth said:

Well, Aiculsamoth, MS is a 'straightforward' demyelinating disease, as in that's the major cause/result of the condition. The fact that TN does occur with it gives it at least a strong correlating link, since TN only occurs with two conditions that I know of: MS and shingles, also a nerve aggravating/destroying disease. Interestingly, I've never looked shingles up to see if any demyelination is thought to occur there. If it did, that would certainly strengthen the correlation. Actually, it would be a very interesting thing to do, to compare those two diseases and see if they have any common bonds - maybe if there were any it would give a clue to what causes TN.

aiculsamoth said:

We know MS individuals have an increased risk of tn, but it does not mean it is due to demyelination, despite research which does not take into account the lifestyle of a MS patient and associated factors, MS patients whilst having a larger incidence of TN it is still rather small compared to the general population which could be a factor of any number of reasons. Unless of course there is research to the contrary.

49

This is a very interesting thread. Thank you all for these informative comments!

When my pain started (following damage done by a dentist - so trigeminal neuropathic pain) I finally found some relief from gabapentin after fumbling around through other meds. What I found was that I quickly had to increase the dosage to still get relief. But when I started having horrible side effects on 1800 MG including body zaps and tingling, I was forced to decrease. When I went all the way down to 300, what I found was that I felt exactly the same and continue to feel the same. I still had the same flare up pain that I did each month, but it didn’t happen more often or anything. I’m beginning to question what these meds are actually doing for me and I feel more and more as though TN type pain is just a cycle and it’s hard to escape or change the way the cycle goes, meds or no meds.
I know that medications are sometimes a necessary evil, but working with lots of patients everyday has shown me how worse off in general they can make your body as an overall system.
I have no “scientific” evidence to support this but when you are jacking with chemicals in your body, there is going to be collateral damage.
We are only just beginning to understand the effects that narcotics, for instance, have on our system and rebound pain/worsening long-term pain that can occur due to them further down the road.

50

Hello Laura,

I have a few questions for you.

First I wanted to know how your T2 was started/triggered, second what kind of anti-seizure medication you were taking, with how may mg you started and what increment did you use when you increase the dosage, I used gabapertin, I started with 100 mg and increased by 100 every 5 days, I am at 600 mg and I feel good. No doctor can tell you how many mg to take, it is up to you to determine what dosage makes a difference and then you stop. As for relapse when you stop this is normal, I quit smoking after smoking for 30 years and my system went nuts for a few weeks and finally adjusted. Don't forget that ant-seizure anti-epilepsy also anti-depressant medication reduce the release of chemicals that are involved in transmitting messages between the nerve cells, the effect is that the brain does not receive the pain messages, so you don't feel the pain. These meds are also used for phantom pain. So, if you taking the med for some time and then you stop the neurons need to adjust to the absence of the med and this is a relapse.

cheers,

NIkos

51

For yet unknown reasons, TN usually goes into remission and cycles with remissions becoming shorter and TN becoming worse.

After getting the TN under control for 6 weeks, it is recommended that you and your healthcare professional slowly titrate the dose down. If pain returns they will take you back to the last level.

How carbamazepine works on TN is not well understood. But the current thought is that it increases the amount of irritation it takes to evoke a response from the nerve cells. It also stabilizes the nerve cell making it take longer to recover before it can fire again.

My theory is that controlling TN for a time resets the cells or allows the cells to recover from an irritant. That's when we get remission. Take advantage of remission all you can and be ready to go back on medications.

I've been able to go completely off of Carbamazepine.

When my remission is over I will go back to Lidocaine 4% nasal spray, two sprays each nostril, lay back immediately for 1 minute, then turn head completely facing down to let it drain out. (otherwise it numbs your throat). You need to do this twice to get the recommended amount of Lidocaine to the nerve ganglion.

Transdermal gel applied at the jaw line just below your ear on the affected side.Mine is Ketamine 5% / Ketoprofen 10% / Gabapentin 6% / Clonidine 0.2% / Diphenhydramine 5% / Lidocaine 5%. You have to have your doctor order this and then take the prescription to a compounding pharmacist. This puts these meds right at the problem. They are eventually taken away from the area as well and sent through the body, but the dose is so trivial by the time it gets diluted into the whole body that I have no side effects from it. Your doctor or pharmacist may question Clonidine because when you take a large dose it reduces blood pressure, but applied topically it opens up the skin to get the meds in deep where they need to be.

Ketamine 5% / Ketoprofen 10% / Gabapentin 6% / Clonidine 0.2% / Diphenhydramine 10% / Lidocaine 5%

52

I have tried several neuroleptics without success or with side effects. I was never sure if they were really working as I changed medications and doses often. I then tried Topomax but had to stop due to the side effects (hair loss, jumbled speech). I have been on Zonagram now for about a year. When I try and back down the dose I have increased flare ups so I think it may be working. But I can’t help but wonder if it is a remission so I don’t go off the meds.

53

What about something as simple as gravity-I look in the mirror and it appears that my face is sliding off. OK not really-but there are sure jowels around my chin that were not there 35 yrs ago. So a blood vessal sags a little with age and a little gravity and is now sitting on my trigeminal nerve. As my heart beats in a regular fashion it irritates the protective coating and I am in pain. Big time pain. As I continue to age ( we never get younger, do we) the blood vessal continues to sag a tiny bit more. Just enough that it is no longer sitting on the nerve but has slid off a bit.

There is a lot of nerve surface to travel and a lot of blood beating through those vessals. The tiniest movement of one or the other along the paths can cause new compressions and resolve others, allowing the cycle to continue or go into remission for awhile, or not. Very over simplified, but you get the general idea. At 67, everything else is sagging, why not a blood vessel. We are talking about a very tiny amount to make a big difference, not the huge amounts that have seemed to have taken over much of my body. Ever try jogging with your head exploding in pain.

I am not making light of anyone's pain. I am bilateral for over 15 yrs. You have my greatest empathy as we travel this very rough road. I thought a touch of humor directed at myself, would not hurt and may make someone smile. Prayers and love to each of you as we go through this.

54

Hi Laura,

I have ATN1 and TN2. Those meds do not work and alot of them are the same thing,

I stopped taking all those drugs. I have noticed any medicine changes or treatments make the

nerves numb for a few weeks. It seems once the chemical reaction is gone, the nerves push through.

They hold a cure over your head Laura but there is ni cure. The glyserol shot doesnt work, the gamma ray, all the drugs are just stepping stones to brain surgeries. Hope this helps

Jane

55

Be careful about giving medical advice. If you're not a healthcare professional you can only attest to what did and did not work for you.

If you give medical advice, say... "Carbamazepine is bad you shouldn't take it". Someone may take your advice. However, you may not be aware that stopping Carbamazepine suddenly, especially a high dose, will cause a person to have seizures which can lead to brain damage or even death.

You don't want to hurt people, so just be careful in what you say.

Lee Strausberg R.N.

Nurse Paralegal

TN fighter

56

Very good analogy and you've hit on one theory they've been looking at.

galli said:

What about something as simple as gravity-I look in the mirror and it appears that my face is sliding off. OK not really-but there are sure jowels around my chin that were not there 35 yrs ago. So a blood vessal sags a little with age and a little gravity and is now sitting on my trigeminal nerve. As my heart beats in a regular fashion it irritates the protective coating and I am in pain. Big time pain. As I continue to age ( we never get younger, do we) the blood vessal continues to sag a tiny bit more. Just enough that it is no longer sitting on the nerve but has slid off a bit.

There is a lot of nerve surface to travel and a lot of blood beating through those vessals. The tiniest movement of one or the other along the paths can cause new compressions and resolve others, allowing the cycle to continue or go into remission for awhile, or not. Very over simplified, but you get the general idea. At 67, everything else is sagging, why not a blood vessel. We are talking about a very tiny amount to make a big difference, not the huge amounts that have seemed to have taken over much of my body. Ever try jogging with your head exploding in pain.

I am not making light of anyone's pain. I am bilateral for over 15 yrs. You have my greatest empathy as we travel this very rough road. I thought a touch of humor directed at myself, would not hurt and may make someone smile. Prayers and love to each of you as we go through this.

57

I don't pretend to know all the science but I know my history. I used tegretol for six months and the tn came back. I got a gamma knife after trying a cocktail of drugs to no avail and pain relief lasted six years. I then had an MVD done and am still pain free after five years. Hopefully it won't return.

58

I do not have TN, but my daughter did. She died from acute toxicity of medications prescribed to mediate the pain of trigeminal neuropathy. Emily was something of a known quantity in the TN community, as she was one of the founding members of the Young Patients Committee of the National Facial Pain Association (TNA). Many groups have done me a great kindness by inviting me to participate. At first, I participated to honor my daughter. Now, I do it because I feel there is a great need.

Laura, I have taken anti-seizure meds, not for seizures, but for other issues. I still take Klonapen for anxiety, although I have been told that I may not take benzodiazapenes (Depakote, Klonapen, Ativan, etc.) for the long term. For a short period, I was given Gabapentin to control the panic attacks that woke me every morning, because I did not know if Emily was going to have a seizure that day. After she died, the panic attacks went into remission for about 8 weeks. Then they returned, because I knew I was waking to face another day of grieving. At 1800 mg of Gabapentin, I had relief from panic attacks, but I also had allergic reactions. My face looked red and blotchy; it looked like I had some sort of food allergy. Although Gabapentin is sometimes prescribed to relieve tinnitus (ringing in the ears), I had a paradoxical reaction of getting tinnitus from Gabapentin. I will spare you the details of other reactions. I tried working down to a dose that I could tolerate that might give me some relief from the panic attacks. There was no such dose. I just had to wean myself off of Gabapentin.

I seem to be a walking text book of adverse drug reactions, and your story so strikes a chord with me. I have had adverse reactions to every SSRI that was ever prescribed to me for depression. I lost 15 pounds while taking Celexa, but it is not a diet plan I could recommend. I also had an adverse reaction to Cymbalta (more ear-ringing). My psychiatrist asked me if Cymbalta had improved my mood. Thank goodness for her sense of humor! I said, "How could I tell, with all that ear-ringing going on?" She laughed, which just proves that she is a rare psychiatrist, indeed. How many psychiatrists do you know who have a good sense of humor? Because I had that adverse reaction to Cymbalta, I am presumed to be a poor candidate for Effexor (amitriptyline). I'm not sure I would even dare try it!

I don't even want to think about what trazodone did to me. It was not pretty. It landed me in the ER three days after I quit taking it, and I hadn't even worked up to a beginning adult dose. Are you beginning to get a picture here? I'm a tough patient to medicate. Whenever I get sick, the person I feel the worst for is my doctor, because I know she has a hard job in front of her.

I do know that no two people respond the same way to the same drug that affects the central nervous system (CNS). Since TN is such a rare disease, until recently, no drug was developed to target TN, specifically. People who have TN have had to "make do" with medications that were found to provide pain relief when they were prescribed for other ailments, like seizures.

Do the drugs prescribed for TN inhibit natural reparations? I do not know that anyone has researched the question. Since anti-seizure meds and opiates are all metabolized in the liver, and some fatty substances are manufactured in the liver, it could be that the medications interfere with the body's own attempts to generate the fatty substances that, in part, protect the trigeminal nerve bundle. But, I cannot say that with any degree of certainty. It's a question in need of research.

The research into that particular question, however, may be eclisped by research into Drug #802, with the preliminary name of Raxatrigine. Raxatrigine was developed specifically for the treatment of TN and has undergone rigorous trials in Europe, where initial findings are promising. It addresses the pain of TN without causing dizziness or memory lapses and has shown no damage to the heart or liver. The FDA has only recently given approval to Dr. Joanna Zakrzewska to conduct trials in the U.S. for Drug #802. I will get her e-mail address for anyone interested in participating in U.S. trials.

TN stinks. The drugs used to treat it stink. The surgical options carry their own risks. Raxatrigine is the first medication developed specifically for the treatment of TN. I will dig up that e-mail address, which I thought I had. Back to the drawing board!

59

Hi Mark,did you have type 1 or type 2?

60

Hi Laura,this happened to me too,I have type2.I had one year of wonderful pain free life,life was good.Then after a period of prolonged stress the pain came back.Currently I am not on any medication and managing the pain as best I can …being kind to myself,avoiding too much stress( uh!),trying not to get overtired ( again uh!) etc…Im also looking into ,on advice of Nicos on this site,as to whether the two implants on my bottom jaw may cause the pain.I do think our bodies have a great capacity to heal if we treat them kindly.Again somebody on this site posted about this.Im not sure who but a very good read if you search.Best Wishes!