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Caring for someone with Trigeminal Neuralgia

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Old 09-10-2011, 01:10 PM   #31
Scarlet Dreamer
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Thumbs up 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


Quote:
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 09-10-2011, 10:34 PM   #32
Burntmarshmallow
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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
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Old 11-03-2011, 08:06 PM   #33
flans
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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
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Old 12-16-2011, 05:36 PM   #34
Marcela
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Default 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.



Quote:
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 12-16-2011, 10:07 PM   #35
Burntmarshmallow
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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.
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Old 12-16-2011, 11:30 PM   #36
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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.
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Old 12-18-2011, 10:52 PM   #37
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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...
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Old 04-21-2012, 11:25 PM   #38
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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.

Quote:
Originally Posted by Doodle bug7 View Post
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
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Burntmarshmallow (04-27-2012)
Old 05-19-2013, 05:22 PM   #39
TN-GK What Now?
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Red face 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.
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Old 05-24-2013, 07:27 PM   #40
TN-GK What Now?
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Default 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!
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