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Caring for someone with Trigeminal Neuralgia

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Old 04-16-2010, 07:57 PM   #21
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Default 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.
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Old 04-30-2010, 02:10 AM   #22
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Default 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.
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Burntmarshmallow (04-30-2010)
Old 04-30-2010, 05:53 AM   #23
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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.
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Old 04-30-2010, 06:24 AM   #24
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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 now you do too . . . off to get that link bbs
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.

Last edited by Burntmarshmallow; 04-30-2010 at 06:29 AM. Reason: add link
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Old 07-29-2010, 09:27 PM   #25
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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
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Old 09-11-2010, 12:10 PM   #26
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Default 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
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Old 09-12-2010, 12:05 PM   #27
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Originally Posted by jurisprud View Post
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
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.

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Old 10-22-2010, 03:57 PM   #28
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Default 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.....
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Old 08-04-2011, 01:31 AM   #29
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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.

Originally Posted by Burntmarshmallow View Post
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....
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.
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Old 09-03-2011, 05:38 PM   #30
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Default Glossopharyngeal Neuralgia & Arteriovenous Malformation (AVM)


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

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