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Caregiver Tips

  moses

written by Bob Moses

long-time face pain patient and TNA supporter

   
 

The purpose of this is to help people deal with and support neuropathic facial pain and TN sufferers (parents, siblings, children, spouses/significant others, relatives, and friends). It is intended as a starting point for information. Facial pain is a horrible condition with elusive treatments. Surgeries and medications that may work for some sufferers do not work for others. There is no one answer to facial pain or TN. It is a difficult condition for people in contact (relationships) with sufferers to deal with and understand. As someone providing support to a sufferer, you are in a difficult situation. Information about facial pain and TN is available on the Internet, but there is nothing to help support supporters.

     

Filling the Information Gap: Information on neuropathic facial pain and TN can be found on TNA's web site or by using a search engine (Google, for example). To find information on a search engine, type in Trigeminal Neuralgia and you will find a good deal of web sites and information to review. For people who support sufferers, it is not that easy to find information on your own. It can be difficult for people to support someone with a chronic condition, like facial pain or TN. It is horrible for the sufferer, and difficult for a supporter to understand. It takes a solid commitment to "be there" for a face pain sufferer, and it is not an easy thing to do.

Getting Information: TNA's website is a great starting point for information. Books like "Striking Back" and "Insights" can be purchased here, and they are amazing resources. The TNA site also lists local, regional and national conferences on TN, local support groups can also be found. Attending a support group meeting in your area is a valuable resource. You may choose to attend a conference, and/or find local seminars you wish to attend. The TN-List at: TN@LISTSERV.UARK.EDU is composed of sufferers helping each other by sharing information through emails. The TN-List is monitored, the information is helpful, and people talk about their own experiences which address issues from many angles. Supporters as well as sufferers are on this list. It will enable you to find other people you can share with, and receive advice.

TN/Neuropathic Facial Pain & Treatments - Brief Review: This I leave to the experts. To review facial pain and the treatments, click here.

Doctor's appointments: Be sure that someone always attends all doctor's appointments, examinations, consultations, and hospital visits with the sufferer. A face pain patient may be in pain and not remember everything they want to discuss or review with a doctor or hospital (even if they are not in pain at the visit, they may not remember). Likewise, the patient may not remember all of the options given to them. For example, a patient may be given three, five, or even ten options for treatment, but will only remember one or two. Another person is a must for any of these visits to insure that all of their concerns are brought up to the doctor, and that all of the options given to them are remembered. Write down all of your questions and concerns before a doctor's appointment, and write down everything important the doctor tells you about possible treatments or surgeries.

Triggers: Triggers are anything that can bring on an attack, and include, but are not limited to: touching the effected side of the face (cheek, nose, ear), wind (even a slight breeze), putting on makeup, shaving, noise, brushing teeth, face washing, changes in weather/humidity, lifting, aggravation, even the daily care of children can be impossible. Understand that a face pain sufferer may find it difficult to go out of doors even when the weather seems fine and stable, impossible when the weather is bad. Click here for information on pain-triggering and pain-safe foods.

Understanding your role: Sufferers may need help because some of the triggers mentioned above are unpredictable. An attack can occur at any moment for what may seem to be no reason at all. Likewise there are times when a sufferer may be able to do many "normal" activities. Be aware, and be flexible. Also be aware that many sufferers take pain medication for the pain, and may have to increase the amount needed for "breakthrough" pain. There is a fine line between controlling the pain, and taking too much medication. As someone in a close relationship with a facial pain patient, it is important to be aware of this, and be watchful of the patient.

What can you do to help

Be supportive: Face pain, including TN, is also known as the suicide disease because of the number of people who believe that it is the only way to stop the pain. Taking such extreme and mistaken (my opinion) action is a terrible thing to think about. Your support can be the most important thing to a sufferer. Be as patient and supportive as you possibly can. Although a sufferer may be preoccupied with the pain, and not openly seem to appreciate your help, believe me, it is needed, appreciated, and truly a blessing. Do all you are able as YOU ARE NEEDED AND APPRECIATED!!!!!!!! More than you can imagine.

Networking: The best ways to network and obtain information is by attending a local support group meeting, a conference, seminar (nationally, regionally, or locally - check the TNA site for more information), and through the TN-List.

Be Patient: TN and neuropathic facial pain sufferers may have difficulty doing things, going places; even remembering to take medication can be a challenge at times. Because the onset of facial pain is so unpredictable, it may be difficult for a sufferer to stick with plans made in advance. An attack can make any type of gathering, events, and travel, (especially when air travel is involved) impossible. This is something you (and they) must deal with, and it can be trying. Keep in mind that "spur-of-the-moment" trips/events can help a sufferer to do more. When the patient feels okay - GO! Many times even the best laid plans can fall apart because of the pain. Remember, as bad as you may feel rescheduling something, the sufferer feels worse because they are unable to attend, and they feel terrible about doing this to others.

Posted 2-07-08