Caring for someone with Trigeminal Neuralgia
 

I got this from a fellow T.N. poster Tots aka Tracy who is across the pond. so MANY MANY THANKYOUS to her and all the helping she is doing. Peace .
it is long but helps....
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Caring for someone with Trigeminal Neuralgia

This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.

It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.

TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.

There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.

It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!

The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!

You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.

This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.

If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.

Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.

To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.

The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them. The best starting point would be the book, Striking Back – The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and former sufferer, which is available direct from the TNA-UK at £16.50 including p&p.

The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.

The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!

In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!

Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.

In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.

The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.

As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure.

TN
 

I understand completely what you are saying. I was diagnosed with
Trigeminal neuralgia about 15 yrs. ago. The Doctor put me on a low
Dose of dilantan and Ametriptilene. It worked, so I thought that was
that. In fact it took care of it for 10 yrs. I was happy about going on
with my life and forgetting about those lightening strikes that hit my
face out of the blue. It had scared me beyond words.
Ten years went by and I continued taking my meds and go to my
job as a nursing assistant on the medical floor of a busy hospital.
During this time I met and married a wonderful man, whom I
explained why I took my medicine.We were married for about 2 yrs.
when our lives changed forever. We were shopping at the Mall in
Joplin Mo. when I felt the first twinge in my face. Oh my god this
couldn"t be. I stopped talking immediately.
I could not go to work and my husband and I slept in our recliners.
I couldn't go to our bed because the lightning bolts were hitting
regularly.I just did not know what to do. I was so scared .
The next day my husband made an appointment for me with a
neuroligist. He got us in that same day. I was admitted to the hospital
that evening. They started a morphine pump. For 9 days I was there.
To this day I have no memory of that time.
I was transfered to Kansas City to a neuroligist who could do a
surgery called a Microvascular Decompression. I was hopeful about
it but at the same time I was terrified. I was recovering in ICU when
I felt a jolt in my face. The surgery FAILED. During the next weeks
I was like a zombe. I wrote everything down as I was too scared to
speak. I would lay on one side on a air mattress in the floor. I dreaded
moving if I needed the bathroom.
Dr. Kaufman gave us another option. I could have a Balloon
Decompression. They stick a needle in your cheek to the base of the
skull and try to destroy the nerve. The first one didn't work, the
second one didn't work and the third one did not work. I was losing
weight as I couldn't eat and also dehydrated. This was the darkest
time in my life. My husband would sit by my side and say a prayer
to give us strength and guide us to a solution.
I don't know how it was decided, but we were headed to Mayo
Clinic in Rochester Minn. I had to lay down in the back seat. I rode that
way all the way there so scared to move. We went through a snow
storm in DesMoines so we had to travel slowly. It seemed like a life
time to get there.
Finally we were at the emergency room at St.Marys hospital. which
is a part of Mayo.I was quickly admitted. I had about 4 or 5 nurses
and maybe 2 doctors gathered around me. The next morning, I was in
surgery! Dr. Pollack had a plan to parcially cut the trigeminal nerve.
It also failed I was so devistated. I truely had a plan of my own by
now and it was the only way out of the hell I was going through.
I knew I could get out of the misery by taking my life. It seemed
that I almost had a peace in my self by knowing there was a way out.
After this brain surgery I was put in the pain unit. The nurse kept
reminding to breath because the medicine was slowing everything
down so much. I did not care if I breathed or not. My husband was
always at my side through everything reminding me he loved me so
much. Tears would come to my eyes as I looked at him. He knew I
loved him too. He was my rock and he didn't ever complain about
those nights when I kept him awake just so I knew he was there.
He never faltered with his love and devotion.
Three days later I was back in surgery. This was the last option
I was given. To sever the trigeminal nerve completely. I don't remember
anything about it as I was sedated. I was told that this would make
the left side of my face numb. It did. The operation finally took hold
a few days later, because the pain stopped. When they wanted me
to take a shower a couple days later and it would be my first time
up, my head was so dizzy. The room spinned around me.
I was released a couple weeks later. My strength took awhile
to come back.
The first night home I felt a burning in my face. It continued the
next few days and was turning into actual pain. We called Dr. Pollacks
office and we asked about this. They said it might continue or maybe
it wouldn"t. Not a real good answer.
This is five years later and the pain has been with me all this time.
I found out that it actually has a name. Anesthesia Delorosa. It is
a dreaded complication of a microvascular Decompression. Now I hurt
24/7 with a different kind of pain. It gets severe sometimes It is
not the lightening bolts that hit before, It is not a scary pain, like
the trigeminal neuralgia but none the less, PAIN. I take around 20
some medications every day. I lost my job that I loved so much. I
get a disability check every month. I don't drive anymore. I did get
off the narcotics I was taking. I take Neurontin, Amytriptine, Lyrica,
Hydroxizine, paroxicam, peroxitine. I developed restless leg syndrome,
so for that I take Requip. I also see a Psycolagist once a month to
deal with evrything that has happened. We do a kind of self hypnosis
relaxation tapes. I can say that I am happy for the most part. I live
each day the best that I can. My husband trys very hard to make me
smile, actually he doesn't have to try that hard. He has been by my
side every step of this journey, not behind me and not ahead of me.,
but right beside me.
I know how devastating this condition can be and I pray that somehow
everything will get better for you.
Sincerely, Patti Hall

Thank you for writing this... This puts in words what my husband does for me but it is nice to have it for others to read...

Hello damyers, nice to meet you hopefully your having a low pain time .
I wanted to say I did not write the caring for someone with t.n.. post above it is from the book striking back I believe and actuly got its from a fellow t.n. person Tracy who is a right arm angel helping t.n.a. across the pond. Many Blessings to her!!!
Just thought it is good up here so new ones can use it to help others (family friends g.p.) ... understand cus talking hurts sometimes easy to print it and share. ;).
May you have a Merry Christmas and BRIGHT New Year.
Peace
BMW

until recent flare of facial pain & other symptoms marked the return of TN in my life no "need" to come to this forum, as I've felt w/ other topics @ NT
but now.... remember why TN is referred to as "suicide disorder"

Bless and thank you all... for sharing so much here....


tho I've not been thru as much as many here-- I do empathize w/ the stress , fears & frustrations of dealing w/ medical & other systems; pharmecutical trial & error, and other failed interventions--that either do nothing or worsen the condition. and numerous misunderstandings & misconceptions [ignorance?]


I"ll be sharing this , including the personal experiences, w/ my family & concerned others... TN does have "unique" issues, but much shared here is relevant to & for those who suffer with or care for someone w/ a chronic debilitating condition, esp. "invisible disabililitys"

with this flare of TN, been trying to explain how intense, horrible, debilitating and depressing... combined w/ other disorders = dysfunction, despondancy, and more.... PAIN near the brain is awful. but TN may be one of the worst ...
my family has been wonderful in trying to understand, support & cope w/ my various disorders which include TBI-Traumatic Brain Injury, "mixed" headaches and other chronic pain & neuro disorders.
despite how it often feels, I am Blessed, in so many ways--Family tops List--including this extended cyber Family @ NT.
Now, esp. during this holiday season that can evoke stressors & challenges, need to focus more on those ....
BLESSINGS....
wishing ALL the Best...

Hi there
 

Hi there, im 22 years old and suffer from this horrible thing.. right now im up with it. i have bouts with it on and off i havent had an attack in a week all of a sudden woke me up in trendeous mount of pain :(
god this pain is horrible id rather give birth 10 times over then have this :( it really suckjs it prevents me from doin my other outdoor activtites!! like today this mornin went outside with my lil ones sure enough it had to start tonight... anyways im nw to this hope i can talk to others. is it normak to have it soo young?? going to go and try to lay down get some Zzzzz's..night all

:-(

( In Pain, sniff sniff )

hi there inpain2008 I posted to you in the threads below cus the ones up top here are supose to be for info and web site links. ;)

i have had it since it 1994,and it's now chronic,not intermittent.i am on lyrica for it which isn't really helping.i am suicidal anyway,dealing w depression/anxiety.the chronic pain is making my mental illness worse.i am at the edge of the abyss on a daily basis,i struggle not to kill myself.:(

Luvdogs... I posted below to you and had hoped you would see it and reply but maybe if i give you the link here you will see it...
http://neurotalk.psychcentral.com/thread60061.html
or you can click on my name and message me. just know you are NOT alone. I too have been suicidal in past ..
hope you come back and join in the forum here.
PEACE
BMW

Wow... `I recently was diagnosed with TN and I am only 29 yrs old. Reading this I have found that I am already experiencing some of the things she has described in this, and some I yet have not. I was already scared before reading this but I am definately scared after reading this. I do want to say thank you for posting this though. I truly appreciate it.

Hi Burntmarhmallow, my name's Rob and I've only just found this site and just read the message you posted back in 07 about caring for someone with TN. It made me cry so much because I suffer from Anesthesia Dolorosa and this message "hits the nail on the head".

Hi Rob I am sorry that you have A.D.
I also have it as do a few others here . You not alone and I am glad that you found Neurotalk's T.N.. forum. Do you know how you ended up with A.D. ???
My lower right trig nerve was snapped in auto accident but I know allot of others who are left with A.D. after failed surgeries . Either way it sure is one heck of a monster to co -habituate with . I hope you have been able to find some way to control or lower some of the monster pain.If there is anything any of us can help you with do not hesitate to post, ask, we are an amazing group of people and will help any way we can.
It is nice to meet and chat with you .
:grouphug:
Sending low pain and positive energy to you and your family.
PEACE
BMW

Hello
 

Hello, I just started reading your posts. I need to ask a favor. In short, My tn started March 2009. I had gamma knife in june which was very successful. In July I was in an auto accident and the tn came back much worse than before. Then in the fall I started getting this burning, stabbing, numb, pulling, heavy, electric shocks to my face. What I have read, this is ad. I can't find any literature that an auto accident can cause this. I will be going to trial for the accident and I was wondering if you have any information that would be helpful for me. Thank you so much.

I wrote you but just seen this and need to stress that you make sure you have not run out of time each state has a statue of limitations on things . like for mal pratice here in fl I think it is 2 years but not sure , each thing has a different limitation time. so check that for your state and also make sure all your doctors are putting all this in your file documenting every thing.. your pain etc..
I will be in touch soon.
PEACE
BMW

My pain started after a supposedly routine operation. I was supposed to have a cyst/polyp removed from behind my left cheek. I was assulted after work in 2005 while trying to stop a man from attacking my pregnant friend. The man had just broken into her car and stolen the her stereo. We saw him get out of her and myself and a work mate called Dan stupidly ran after him. We cornered him and he said he would give back the stereo so he took us to when he had hidden it. It was in a bush near the car. Vicky, my pregnant friend who owned car, was on her phone to the police and when he noticed this he flipped. I had worked in the pub trade for 5 years and had seen people flip before but this was different. He went for Vicky and I grabbed him and threw him against a wall. He started swinging for me and I blocked a few (what I thought were punches) but 2 got through. Dan grabbed him in a head lock but suddenly went down. The man had stabbed him in the chin with a screwdriver. I went to restrain him with an arm lock but he twisted out and punched me in the face and ran off, I tried to run after him but my balance was shot after the punch so he got away.
I had my left cheek broken but what I thought were punches weren't. He had the screwdriver in his hand and he had stabbed me twice in the face. One didn't penetrate the skin much but started next to my nose and went up between my eyes and finished in the middle of my forehead. The other went in just above my left eye only just missed the eye.
I lost the feeling of touch in the left side of my face and lost a bit of vision but I just thought how lucky I was to still have my sight!!
I carried on with life and changed my career from bar management to gardening (plants don't argue back quite as much!!!) and really enjoyed my new career.
I was so lucky because firstly Vicky had a beautiful baby boy and no one was that seriously injured. My face was numb but I had no pain, it was the total opposite, it felt like I had just been to the dentist and had an injection just permantly!!
I was being seen by specialists at my local hospital and they had seen on a CT scan that a cyst had built up behind my cheek and told me that it needed to be removed.
I had just started a new job but the surgeons insisted that it was a routine operation and that they had done thousands of these before with no problems and I would be back to work in 3-5 days. So I had the operation.
I went home after the operation and felt fine, I was on cloud 9 because of the general anesthetic still in my system!!
When the drugs wore off I noticed that I had a dull aching pain and shooting pains when I bent down or stretched. I went back to work after 5 days but something wasn't right. I went to see my gp and he said that it was probably just the healing process and the pain will go away. That unfortunatly never happened.
I went back to see the surgeon and I was told that during the operation they couldn't find the cyst but he had removed some inflammed tissue???
I found out later that this was probably the ends of my nerves!! Nice one!!
I have been on many combinations of medication but the only one that took my pain away was a nasel spray containing ketamine. The only down side was that the side effects were horrific!! I couldn't remember anything, was totally spaced out, couldn't drive and basically had no quality of life so I had to stop that.

I've had a nerve block attempted but this was unsuccessful. No one wants to try and remove the nerve because they're scared that they might cause even worse pain or do damage to something else.

I'm currently still on loads of medication and I'm waiting to go and see a neurosurgeon and talk about possible deep brain stimulation. I'm really scared because surgery is partly to blame for my pain so I don't really want anymore, but on the flip side, it might help stop/reduce this awful pain??

ouch ouch ouch :( I am so sorry you have been threw that! So sorry people are uncaring and down right nasty violent to others. I can not get into doctors removing things they shouldnt have...If i say what i feel I will get banned but w.t.h. :mad:

I am really curious if you are able to at least try a neuo stim a.k.a. p.e.n.s BEFORE they set you towards the deep brain stim???????
I too can not have any type of surgery and no doc or neuro wants much to do with me as any "work" they try would just make things worse. But I am Blessed and thankful for my neuro stim implant. I know of other who do have the deep brain stim and can connect you if you would like when the times comes. It is A Big surgery and I pray to any and all Gods that you have a great neuro and staff when it is done. I am gonna message you so check your box.
Have you in my prayers.
PEACE
BMW

Hi BMW, How are you keeping?

This is my story too! Julz in TX
 

I can't believe that Patti is telling my story exactly. I mean a few things I didn't do like try severing the nerve, but after the MVD, several months later the AD was diagnosed. Now, instead of having symptoms only in the mandibular I had ithorribly it my cheek and right eye. I have a pain pump now and it took about a year before it really began working and I still have to take some oral meds (Oxycontin and Dilaudid) for breakthrough, but I am alive. I too thought about taking my own life. But my faith is stronger. My husband of 27 years is also my greatest supporter, he drives me to all dr. appointments. I had a dentist take advantage of me and do some terrible dentistry which complicated my case terribly and I'm still having to have his work repaired, but I lost several teeth, he did unnecessary root canals and while he said he was doing veneers on my front teeth, he did one giant crown; soon, the tissue was necrotic because I could not floss; I went back to my dds of 20 years and he has been taking photos and I've been able to floss and soon, I'll have new front teeth, but this guy will see me in court. But back to the disease. I wish I had someone like you to talk to. Just once. i'm so amazed at teh similarities. We went to Tampa Bay General (we live in the Houston area); and Dr. van Loveren did the MVD after just talking with me once and his office profusely called me to set an appointment for the surgery. I only saw him twice afterwards and the first time was to remove the sutures and second time he said "well, if you didn't have it before, you definitely have it now". I was so upset to fly all the way to Tampa to hear this; and then I went back to a doctor I'd seen in Baton Rouge. Here I'd had the Stereotactic Radiosurgery at the Mary Bird Perkins Cancer Center. Dr. Waguespack was absolutely great! I love him, but during this time, my husband was not involved like he his now. He did not hear Dr. Waguespack warn me against having this surgery for fear of Anesthesia Dolorosa, "a pain far worse than what you have now." This doc in Fl. was suppossedly the best! He'd done more of these surgeries than anyone, but did that mean they were all successful, I asked? No answer to that. There is someone out there who relates. Wow. I am only 51. This all began when I was only 40. Now the pain is constant, and I sometimes use a ketamine compound. I try to live life wtihout complaining; I lost most of my friends, except my sisters in the Women Divers Hall of Fame. I thank you Patti for spending so much time writing your story. It helped me today! God Bless you. Julz

Me too, I read his post and I cried, but mostly I want my husband to read it. I also have AD and I have a pain pump installed which helps me. I wrote in reply to an earlier post and told some of my story, a failed MVD... I had that surgery in 2008; in 2009 I had the pain pump installed which takes the narcotics to my spinal fluid. It helps, but I still have to take lots of other meds. thank you all.

HI, I wanted to meet you and thank you
 

You have obviously been so helpful to so many in this forum. I want to ask for your prayers and to thank you for writing the post about caring for a TN patient. My story is long, started with V1 TN and after no results with Gamma, I had MVD and now I have AD which affects the entire right side of my face. I also have the medtronic pain pump which uses Dilaudad and Mirocaine (Bubifocaine sp?) - this is helping heaps; I still use some oral pain meds and I no longer drive, scuba dive, which was my profession. I just take one day at a time and I find when I am alone and not talking (which I so love to do) I am best and need less medication.
Thanks for all your support. Just reading your posts means heaps to me.

God Bless you, BMW... u r a jewel!

julz in texas

Understanding TN
 

Hi, I've had TN for 20+ years, and people around me STILL don't really get it, so this is a very valuable article. It's worth keeping it with you at all times, you never know when it can be handy.

So Many Are Suffering
 

I am so amazed at how many of us are out there with trigeminal neuralgia and not just dealing with that pain but dealing with problems with medications and bad outcomes from surgeries and procedures. I am trying to find out how many folks who had an MVD had facial numbness after? How long did it last for you?
Also, did anyone come out of the surgery pain free and then a couple months later the pain returned?
I am trying to find out how to contact the person on this forum called Burnt-Marshmallow. She sent me a very nice welcome note when I first signed on and it helped to read her story. I was interested in finding out more about the neuro stimulator she had implanted?
More questions: Does anyone take Topomax? If so how much? I was recently started on it and I am up to 50mg daily? Haven't seen much result--I eat less. (One good side effect of all the meds I take)
So---let me know if any of you had a long post operative phase of more than 5 months. My surgeon is saying that I should be better by now---but I have talked to other people who took almost a year for the numbness to wear off. I also spoke to one girl who got pain like I did and then several months later it went away. I am looking for some insight. Thanks.
Oh--Burntmarshmallow--if you are out there---let me know---and let me know about the neuro stimulator. Thanks.
I wish pain free moments to all.

Hello Linnie and welcome to NeuroTalk.

If you have some questions that you wish to address to Burntmarshmallow, I suggest you post them here in this thread, or else make a specific thread about the subject matter that concerns you. I'm sure BMW will see them when next he/she is on line.

After you've been with us a bit longer you'll be able to communicate with other members via personal message.

Hello Linnie . I am still here :).
I have never had MVD or anything as those were not an option for me. I do have a SCS also called PENS unit implanted for my t.n. face pain. I will be glad to help with any questions you have. I will also see if I can hunt down a couple folks I know have had mvd and perhaps we can help with some of those questions you have.
as far as the SCS I have a post in the SCS sub forum I will get the link and post it here in this forum.Tho I dont know if it will answer any questions you have..so PLEASE post and do not hesitate to ask questions.
Low Pain weekend to you.
Hope to hear back from you soon.
... I am female :) lol I knew that:D now you do too . . . off to get that link bbs
PEACE
BMW
p.s. I see you have read this alreadyLinnie but the link ...http://neurotalk.psychcentral.com/thread117803.html
Let me know how I can help or what info you might need as far as SCS and Please know I am here to help to share info and give support anytime for anybody.

It has been a long time since our leader has written on this thread. Hey Tina....How does one take care of themselves when they have Tn or AD? At times I get jealous of those who have someone at home to talk to when the pain get out of control. You can't really call your friends all the time. They get tired of hearing all the bad news. Anyway, thought I would stop by and say hello
Cheryl

Informed consent prior to decompression surgery?
 

This is a general inquiry to all individuals who have had decompression surgery for trigeminal neuralgia. How many of you were given told CSF leakage and potential multiple surgeries were a potential adverse effect from having decompression surgery. I'd love to hear the full rendition of what your doctor informed you of prior to your signing the informed consent form.

Thanks for any and all of your input
Jurisprud

Hi jurisprud
your question is very good!
I think if you post this down below in the forum it will be seen and read more easily then being up in the stickies.
Just start a new thread with title "MVD QUESTION" or something like that and you will get some replies.
I have never had MVD . I know many here have. I will see if i can get them to add input as I cant offer much help on the topic but I can offer a hug good thoughts and can help aim ya in the right direction to contacts and info.
I want to welcome you to the T.N. forum at neurotalk and hope you find as many understanding helpful folks as I have.
:grouphug:
PEACE
BMW

TN..new at this forum not sure where to post this
 

Hello everyone
This is now my second round with TN and it doesn't look like there is much help around the corner. I wasn't sure what was happening the first time I was hit with what felt like a bolt of lightening that dropped me to my knees but it scared the heck out of me and the pain that followed for 10 months was the worst pain imaginable. I suffered for those 10 months because I could not get a doctor to believe me.I went to Mcmasters in Hamilton and had an MRI but was later told by my nuero that I had TMJ which I know I don't. I had bilateral pain but never at the same time, it would switch form one side to the other without warning... I was later put on tegretol and neurotin because I told them I was giving up and I was at that point.I couldn't function any longer, emotionally or psyically.... The drugs were making me sick so after 6 months I slowly weaned off them and was doing great with only the occasional twich of pain and lightening strikes to my face and I was coping well... Two weeks ago I was once again struck with a jolt that dropped me to my knees and the pain has been with me since..I am back on tegretol since Monday and it is helping but will take time to build up to rid me of all the pain.... My problem- why don't they try to find out the cause instead of filing me full of drugs that turn me into what feels like a zombie....is it possible they missed something on the MRI? I've heard that has happened before..Seem they want to mask instead of getting to the bottom of what is causing this.....

I don 't want to live this way because I can't function on these meds and the longer I take them the worse I become..this isn't living and I am starting to feel depressed and how can one not when you are fighting the worst pain imaginable....I don't know what to do but one good thing that happened today was my daughter who finally got me into see her doctor this coming Monday..she's a investigator and gets to the bottom of things, quite different from my present family doctor..hopefully she can help me and thank god I am one stubborn woman or I wouldn't be here today..... sorry abuot my rant but I am feeling down and crappy and exhausted from fighting pain..hopefully this med will build up quickly in my system to give me some relief.....

Thank you for this article. This is the first write up I have been able to find about people caring for a TN sufferer. What do you do when you can't do anything to alleviate their pain? I'm a lurker but hopefully will start posting as I navigate my way around this site.

----------------

Glossopharyngeal Neuralgia & Arteriovenous Malformation (AVM)
 

Hi

Thank you for your post.

I have an AVM. I was born with this, and it was first found in an MRI 13 years ago. While testing for my symptoms of facial pain (Neuralgia - They didn't know it at the time) 2-1/2 years ago, I had another MRI. These results were compared to the MRI from 13 years ago, and they found that the AVM had grown from 2cm to 2.3cm x 1.2 cm, and had hemorrhaged.(I had an event 3 years ago when this happened, and a small stroke). I was alone and confused when it happened. I got severe spins and puked like I was drunk, and it happened suddenly. It was really scary. I fell asleep for an unknown amount of time and half my face sagged for a week. I was also very slow for the first week.

I have 2 conditions that I have been dealing with, and am on medication for

1. Arteriovenous Malformation (AVM)

2. Glossopharyngeal Neuralgia

I have read that the AVM can provoke Neuralgia. I do not know if that is the case for me or not.

I am on 150mg of Lyrica (pregabalin) 2 x daily for the Neuralgia pain.

I am on 5 mg Imipramamine 1 x daily, for the head pains associated with having this mass in my head.

Both meds are very strong. If I forget to take a dose, I can suffer for 2 to 3 days with something similar in feeling to a hang over.

I have seen a neuro surgeon, and I was told there is 100% risk of complication if surgery is performed for either (both) conditions. I still see my neurologist on a regular basis, and saw him a week ago, last.

I've been on these meds for approx 2-1/2 years. They were hard to get used to, and did make the pain far less than it would be without. I've been asking for 2 years to get off of the drugs, and have tried acupuncture, as well as a bad, expensive experience with a quack that did electro-acupuncture, and prescribed Borax, Iodine, Magnesium, and something he called Remedy (water in a bottle the he says he agitated to a particular frequency)

I'm a 53 year old, male professional, with 37 years in my profession. I'm struggling with the symptoms of the conditions, and the side effects of the meds, and it seems to be getting worse, creating a higher dependency on the drugs I want to get off. It's a horrible, vicious circle.

My memory and my vision have been dramatically affected, and are getting worse. I'm now recognizing episodes of behavioral, and emotional problems. I feel as if I am losing my sanity at times.

My neurologist, who cannot think of any alternative treatment for me, wanted to refer me to someone who could administer stronger drugs. I expressed that I so not want to do that, as I have been trying to get off of medications.

I feel that it is becoming increasingly difficult to perform my job as a professional. My personal life has been heavily impacted. I have no social life, and have lost my ability to live normally. I alerted both of my now adult, kids 2 nights ago of where I'm at today, explaining everything, and indicating that I need help and that I am reaching out for that help now, to them.

As my conditions and the dependency on the meds worsen, I am seeking urgently needed support and help to try to regain the ability to live life normally.

Thank you

Ed

You took the words right out of my mouth
 

I want to say Thank you! I was diagnosed with TN about 1 year ago, after feeling like I was going out of my mind. Went to so many different doctors and was told I have TMJ, Migraines, and yes, it is all in my head. It was when I took a trip to a sinus doctor that he knew right away what I was suffering from. To make a long story short, you took the words right out of my mouth. Something that I wish I could just hand out to people that look at when I am going through a bad moment of pain, or trying to enjoy a meal out with my fiance and people are looking at me and wondering why I am making funny faces..... Thank you again... Scarlet Dreamer

I recommend printing it out / making copies and sharing it with those around you... sorry for all your pain i AM sending low pain your way.
PEACE
BMW

good advice,,and understanding in that post,,,,but never never accept tn in your life,,,never surrender,,,never give up,,keep looking for your cure,,,dont become a patient,,,dont rely on doctors,,,high amonia levels from eating to much proteine causes tn,,,i got rid of my tn after 8 years of rediculous pain,,,and medicine that made me sick,,,amonia is the cause,,it is after all,a nuro toxin,and nerve irritant,,,,tn like any other illness,that has a cause and a cure,,.and itas certainly not tegrotol

Spanish translaton
 

Hi there, I want to thank you so much for sharing this. it really helps people to understand what i've been through. I'm from Colombia South America and I noticed that there is not to much information about TN, I'm blessed for having the chance of getting an MVD in US but I know there are many people back in my country who don't have the access or the money to get TN treatments done and would appreciate the kind information like what you posted here. So I would like to translate this article to Spanish and add the authors name in it. Do you mind giving me some more info about Aka Tracy? I would love her to know what I will do with her article.

Hi marcela. I got the article from Tracy but she did not write the article. I am not sure but I think she got it from the book "Striking Back " But I also am checking with pal on Face book as I think one time in the past he said he wrote the article . I know Tracy did not write it but used it in her country to help her t.n association support group years ago . If I am able to find the author I will post the info.

http://www.fpa-support.org/2011/01/caregiver-tips/
I believe this link will bring you to the one who wrote the Article ,Bob Moses... the above link is of an updated article on the TNA site . this article you are speaking of I believe is in the first "Striking Back" book. but I am NOT sure. I have passed my book along to a fellow t.n sister a good while ago.

Yes I spoke with Tots...Tracy and she said it is what they used years ago at the TNA site over in the U.K. so it could likely already be printed in Spanish ... Marcela if you would like to contact Tracy let me know by private message or on my profile page so I can pass the info privately. as far I as know the Article is copyrights of the T.N.A. site and the one who wrote it. not me or Tracy...

Wow...that was so well written...thank you. I have had TN for 3 years now and can't take the medications due to the side effects. I have had MVD (Feb 2010) and the radiofrequency Rhizotomy just last month with no relief. The left side of my face, mouth, lips, tongue, etc is numb and I can no longer feel myself washing my face or brushing my hair but sadly the shooting pains I still feel. It has been a nightmare from day one and I am so worn out. My husband does what he can but it is so hard when there is nothing to see that hurts, like a broken arm...hard to wrap your head around how someone can hurt so much...you said it all beautifully. Thank you.

Support of a partner
 

I am so glad you have the support of a loving husband! I know that can also bring guilt on those bad days...I have it too! My husband of three years does not really understand but he tries and I appreciate that. I can't go outside when the air is moving, the sun is beaming, or it is raining. I can't enter a room with a fan. I am new to this site but I am glad I found it. Good luck and I hope you have a good day soon so you can give that husband of yours a hug from all of us who do understand all too well!
BTW As I told another member, if I told my ex-husband my face hurt, he would have said, "It has been killing me for years"...not funny but he would never have understood. It takes a special person.

Thank you and a new question!
 

As your posts are very wise, I have a new question. If it needs to go somewhere else, please let me know. I am new to this group and still trying to find my way around. I have TN and had Gamma Knife surgery which made it worse. The slightest breeze or cold wind sets off an intense pain that will go on for hours. I take Baclofen and Trileptal, (I have Percocet but do not like to take it). My question today involves clothing. In the winter, I find loose fleece headbands, scarves and hoods helpful but summer is another story. Do you know of any sites that have clothing for people with this type of pain?
Now regarding your post, I did send a "thank you" a few days ago. My husband does not have a clue but he tries; for which I am grateful! His suggestion of wearing a ski mask was appreciated but I can't even imagine how much that would hurt! My brother has RA and as a Neuro Biologist, he does understand. So, that helps! I am lucky in so many ways. At 61, I was able to get Disability and can stay in the house when I want to. I also have two cats. They never judge me and I do not have to take them out for walks. I think animals are great healers.
Thanks again for your words of wisdom!