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Inside this Issue |
Volume 5,
Issue 9
November, 2005
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Trigeminal Neuralgia Assessment and Management History. Patty’s Ponderings and Miscellaneous Ramblings.
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Your financial help is needed
to support the TNAC and the local Support
Groups. Donations can be made by check or money order mailed to: TNAC 1514 Lakemount Blvd South, Lethbridge, AB, T1K 3K4 Be sure to indicate on your check or MO if you want to donate to a specific support group. |
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Newsletter team
Editors: Patty (403) 345-6262 Jan (403) 295-0987 |
Prepared by Pat Rogers, Comox
Often people afflicted with chronic pain also suffer from depression. Although prolonged pain and depression can frequently coexist, they need to be treated as two separate conditions. Studies have shown that at any given time 4% of the population suffer from depression, though less than a third will seek help.
Most people at one time or another have felt down, discouraged or frustrated as a normal reaction to loss of a loved one, losing a job, having an accident or other disappointments which come our way. These feelings can last for days or weeks and gradually fade away. When these feelings last for weeks and interfere with one's family, work and other aspects of one's life it can indicate a major depressive disorder (also referred to as clinical depression). Many times people think depression feels like an intense sadness but for some it can feel like emptiness and being emotionally numb.
Depression can affect our emotions, thoughts, behavior and involve physical responses.
Common symptoms of depression include:
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loss of interest in activities you previously enjoyed·
feeling worthless, hopeless, sad, or guilty·
feeling empty or numb·
avoiding other people·
loss of energy·
disrupted sleep: sleeping too much, trouble falling asleep or remaining asleep·
changes in appetite: not eating or eating too much (losing or gaining weight)·
difficulty concentrating or making decisions·
loss of interest in sex·
feeling that life is not worth living, thoughts of suicide.
What causes depression:
Depression is an illness. Depression is not a sign of a character flaw or a weak personality, though the exact cause of depression is not known; both physical and environmental factors play a role. Studies have shown that there are changes in a person's brain chemicals during depression. For instance, the brain Chemical serotonin is found at decreased levels in depression. This chemical is also involved in the transmission of pain. Several antidepressant drugs work by increasing serotonin levels and can also help in treating atypical facial pain. Depression often runs in families therefore genetics can play a role. It can be triggered by loss, isolation, low income, chronic physical illness or pain, stressful life situations and personality factors - like one's way of looking at the world (ex. pessimistic view of life).
How does depression impact one's life?
Emotions: Sadness, despair, numbness, anxiety and disinterest. These feelings can make it difficult to cope with stressful situations or the chronic pain that contributed to the depression in the first place. They can make it difficult for us to seek the assistance of others to help us to cope.
Thoughts: Depression can distort our views with negative thinking habits, harsh self-criticism, being critical of others and having a grim view of the future. It tends to increase the negative impact of difficult life situations and interferes with the ability to cope.
Physically: altered sleep, low energy and changes in brain chemistry. Altered sleep can make it difficult to concentrate. Low energy reduces our activity level; we withdraw from socializing, and have poor self-care (ex. neglecting our appearance). Inactivity can become a habit; the less you do the less you want to do.
Suicide Risk: Sometimes when people are depressed they think a lot about death and taking their own life. In some cases, they will make an attempt to end their life. Studies have shown that about 3/4ths of the people who have taken their life by suicide have had an untreated depression. It is important to seek treatment.
If your friend or loved one has been thinking of or talking about death and they have expressed some type of plan or intentions on acting on their thoughts, they need immediate treatment. Don't be afraid to ask. If uncomfortable by the word 'suicide', ask questions like
"Do you ever feel like harming yourself?"
"Are you feeling like that now?"
Remind yourself that all talk of suicide must be taken seriously.
Where to find help: Most communities have a number of different places where you can find help:
If you or a loved one feels desperate or suicidal and you need help immediately you can go to the emergency department of your local hospital.
Family doctor: Often your family doctor is the first step in accessing more specialized resources. They can prescribe medications and provide initial therapy.
Local Crisis Hotline: The number is listed in the phonebook on the front cover or the first page under 'Emergency Numbers'.
Local Mental Health Services: Listed in the blue pages of the phonebook under 'Health Authorities'. The team of mental health professionals can include psychiatrists, psychiatric nurses, social workers and occupational therapists who together can provide treatment and support.
**
Remember, depression is a treatable illness. Treatment through medications and cognitive behavioral therapy can be beneficial. As well, learning stress management (coping strategies) and relaxation techniques can be useful in easing chronic pain.
I have some good news about the Medical Information Cards. They are being sent to you with this newsletter, along with a brochure from Dr. Kaufmann. Members who receive the email version of the newsletters, the cards are being mailed out to you. If you wish, you may get the cards laminated after the information has been filled out, or keep in the plastic sleeves provided.
Notice has been given to the Board of Directors of the TNAC that I will be stepping down maybe earlier than anticipated, if I cannot do my duties, as the President of the TNAC, due to a heart attack on my birthday, October l, 2005. I would like to address all the things that I have started if possible before stepping down, however, felt that should I not be able to fulfill my duties, the negotiations for nominees should commence before February in order to give the membership enough time for an election.
A Nomination Form is being made up for the vacancies that have been created to form the next TNAC Executive and will appear in the December newsletter.
I want to thank the members that knew of my illness, for their good wishes, cards, and baked goodies. Your thoughtfulness was much appreciated.
To those of you who emailed me and have not had a response I will answer your emails as soon as I can.
Lest We Forget - "REMEMBRANCE DAY" – November 11, 2005
Until next month,
Marion
Dr. Anthony Kaufmann, Medical Advisor to the TNAC has agreed to answer your questions. If you have a question for Dr. Kaufmann, please send it to the newsletter at
newsletter@tnac.org by e-mail, to Jan at (403) 295-0987 by phone or mail to TNAC Newsletter, #207 15 Everstone Dr. SW, Calgary, AB, T2Y 5B5
Question 1: In July 2001, I had a Radio-frequency procedure which was partially successful. Since then the nerve has been regenerating and the pain gets worse as time passes. My question is: Can you have an MVD after the Radio-frequency procedure? And what are the chances of good results? I am 76 years old. What are my chances?
Answer:
The short answer is yes, you can have an MVD after RFR and there is a very good chance of a good result. This is a common problem as ⅓ to ˝ of people with TN who undergo any of the nerve injury / rhizotomy procedures will have their TN return and will require another procedure. Some opt for another Rhizotomy while others choose MVD. The MVD has a better chance to cure TN and avoid some of the problems (numbness, deafferentation / phantom plain) although has its own risks and inconvenience. The choice between the surgery procedures can be complex and partly depends on who is offering to do the surgery (ie. the neurosurgeon). My own experience, age hasn't been a major concern regarding MVD or rhizotomy procedures, providing the general fitness is good. If you can survive severe TN pain, you will probably get through these surgeries and enjoy the good results.
Question 2:
Your description Anesthesia Dolorosa completely describes the condition I have had since 1997. However, I did not have a rhizotomy, or any facial pain before that time. What I did have was a root canal. It was a replacement of an old root canal, so I felt I didn’t need any freezing. But a couple of days afterwards, I stated to get a tingling sensation like you get when freezing is coming out after dental work. It increased to a crawling felling, and then I got shooting pains. My face was numb (you can stick pins in certain places and I have no sensation) but jumps alive at the soft touch of a scarf, my hair, the wind, or a kiss. It affects the lower two branches of the Trigeminal nerve, but I sometimes have eye pain as well. I was diagnosed with "atypical TN" at the Wasser Pain Clinic at the Mount Sinai in Toronto. I had to leave my job as a Grade 4 teacher years ago as I can only smile and talk for a few minutes before the pain freezes my face, even with the drugs.
Dr. Michael Tymianski said he thought the MVD surgery would help and I came from BC to Toronto and had that done in 2001, but it made no difference, except the surgery site still hurts, but no big deal. My question is this: Do you think Clonazepam would help? I currently take 3800 - 4000mg of Gabapentin and that keeps the worst of the pain at bay. After a year of Tegretol, I developed a rash and was taken off that drug. Clonazepam was described as effective for "burning mouth syndrome" which describes one of my symptoms. Should I try it? Should I cut down on the Gabapentin if I do?
Answer:
The problem you describe highlights the difficulty that sometimes is encountered with face pain and problems. The symptoms of Trigeminal Neuralgia, atypical Trigeminal Neuralgia and Trigeminal Neuropathy are distinct but can overlap. The surgical procedures useful for TN however, are not helpful for Trigeminal Neuropathy, and can even make things worse. While the diagnosis of typical Trigeminal Neuralgia is quite straight forward, the deafferentation between atypical Trigeminal Neuralgia and nerve injury pain can be problematic. The treatment of nerve injury pain can also be very difficult, and may require a comprehensive pain clinic. Clonazepam is one of the drugs that may be helpful, although I would only slowly come down on the Neurontin dose if you are pain free on the new drug.
Prepared by Pat Rogers, Comox
Effexor, Effexor XR--(venlafaxine)
Classification:
An antidepressant medication known as an SSNRI (selective serotonin & norepinephrine reuptake inhibitor)
Uses:
SSNRI's work by increasing the level of serotonin & norepinephrine in the brain. These brain chemicals are a key factor in depression and also in nerve transmission. Therefore, it seems to help various chronic, constant burning or neuropathic pain in a similar way to tricyclic antidepressants (ex. amitriptyline). Effexor is commonly used to treat depression, generalized anxiety disorder and social anxiety disorder (social phobia). Although some improvement may be seen after 2 -3 weeks, it may take several weeks to see the full beneficial effects of this medication.
Warnings & Precautions:
Effexor should not be taken by anyone who is allergic to the medication or any of its ingredients. If you develop hives, a skin rash or have trouble breathing; contact your doctor as soon as possible. This medication has been associated with a modest increase in blood pressure, more commonly seen with higher doses. A dosage reduction or discontinuing use may be considered. People with heart disease, high blood pressure, past history of seizures or with reduced kidney/ liver function should use this medication with caution. In seriously depressed individuals the possibility of suicide is inherent to the illness. People taking Effexor may need to be supervised for increased feelings of self-harm and agitation (restlessness, anxiety, trouble sleeping, irritability or being more emotional). Dizziness, drowsiness or reduced alertness can occur, affecting the ability to drive. Care should be taken to assess how the medication affects certain activities: particularly when first taking it or when the dosage is increased. Babies exposed to Effexor during the third trimester of pregnancy may develop medical complications. This medication is shown to be excreted in breast milk and may affect a nursing baby. Abruptly stopping Effexor may lead to side effects (loss of strength, dizziness, headache, insomnia, nervousness). Check with your doctor if you are considering stopping this medication. Tapering the dosage gradually will minimize the risk of discontinuation symptoms.
Drug Interactions:
** MAOI Inhibitors (ex. Marplan, Nardil, Parnate) do not take Effexor if you are currently taking these medications or have used them in the last 14 days, a 'wash out' period is required. Cimetidine affects Effexor by reducing its rate of elimination from the body and can lead to an increase in the concentration of the drug. In some cases a dosage adjustment may be needed. Alcohol will increase the effects of drowsiness, dizziness & confusion. Effexor can increase the effects of other medications that cause drowsiness such as other antidepressants, anticonvulsants, muscle relaxants, certain pain relievers, antihistamines and sedatives.
Adverse Effects:
Effexor is usually well tolerated. Rare, though serious, adverse effects include: an allergic reaction (difficulty breathing, swelling of the lips/ face or hives), seizures or severely high blood pressure. If these effects occur, contact the doctor immediately. Less serious side effects are more likely to occur and may go away as your body adjusts to the medication. These include: headache, loss of strength, moderate increase in blood pressure, increased sweating, nausea, constipation, decreased appetite, heartburn, diarrhea, drowsiness, dry mouth, dizziness, tremor, insomnia, nervousness, sexual difficulties, agitation or blurred vision. Check with your doctor if side effects persist or are bothersome. Some side effects have shown to be dose related. Monitoring or lowering the dose may be required.
Dosage:
When used for pain control, Effexor is normally commenced at 75mg. / day in divided doses. Then increased by 75 mg. / day every 4-7 days until pain is relieved. A similar schedule is used for depression. Extended release (XR) capsules can be taken as a once a day dose. Maximum dose is usually 225-375 mg. per day. Many things such as body weight, other medical conditions or medications can affect the dosage a person will need. Your doctor may recommend a different dosage from the one listed. It is important to take Effexor regularly to get the most benefit.
How the drug is supplied:
Effexor comes in 37.5 and 75mg. tablets. Effexor XR (extended release) is supplied in 37.5mg., 75mg. and 150mg. capsules. Effexor XR should be swallowed whole and not crushed, chewed or placed in water. If swallowing pills is difficult; the contents can be sprinkled on soft food like applesauce or pudding and swallowed without chewing. Food does not affect absorption and may be beneficial in reducing stomach upset.
** For educational purposes only, for additional information on this or other medications please contact your doctor or pharmacist. Ensure to inform your doctor about all prescriptions, over-the-counter, herbal medications and supplements you are taking prior to taking any medication.
Prepared by Jan Williams, Calgary
There are a number of diseases that can cause facial pain. Your doctor must consider all the possibilities when he/she examines you. Sometimes Trigeminal Neuralgia is not at the top of the list and often patients feel that the doctor "doesn’t know anything about TN" if it takes a while to get to the cause of your pain. The following medical conditions are some of the possible causes of Facial pain:
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Toothache·
Tooth abscess·
Dental abscess·
Oral disorders – like gum diseases·
Ear infections·
Facial trauma·
Glaucoma·
Sinusitis·
Parotid gland disorders·
TMJ disorders·
Headacheso
Migraineo
Cluster headache·
Temporal arteritis·
Trigeminal neuralgia·
Sphenopalatine neuralgia·
Post-herpetic neuralgia·
Giant cell arteritis·
Glossopharyngeal neuralgia·
Migrainous neuralgia·
Angina – very rare but possible·
Referred cardiac pain·
Muscle contraction headaches·
Pinched nerve in the neck·
Psychogenic pain – caused by hysteria and depression·
Multiple sclerosis·
Basilar artery aneurysm·
Acoustic neuroma·
Nasal tumor·
Nasopharynx tumor·
Facial tumor·
Paget's disease of bone·
Lyme disease
This is taken from a brochure produced by the Center for Cranial Nerve Disorders, University of Manitoba.
Overview of Trigeminal Neuralgia (TN) Treatments.
Trigeminal Neuralgia is a chronic disease that usually worsens over time. Severe facial pain attacks may occur with little or no warning and warrant urgent treatment. Each TN sufferer should consider what treatment options they will pursue when their current approach fails.
Treatment options include a variety of medications taken orally (eg. Tegretal, Dilantin, Neurontin, Trileptal). There are also a variety of surgical treatments available when medications no longer provide relief or the side effects of the medications become too unbearable (eg. Microvascular Decompression or Rhizotomy/Destructive procedures)
Occasionally emergency pain control may be required using intravenous medications (eg. Dilatin, Ketamine, Fentanyl, Lidocaine). Careful assessment by a doctor is crucial, as not all types of facial pain will respond to these medications. Surgical procedures may also be effective and can be used for emergency pain relief.
Every case is different and must be assessed on an individual basis.
Trigeminal Neuralgia Assessment and Management History
When first going to your family doctor, neurologist or neurosurgeon, it is very helpful if you come prepared to answer some specific questions about your facial pain. This helps determine what type of facial pain you have and which treatment options may be best for you.
Important details about your pain:
When was the first attack
Has the pain changed over time?
Where exactly is the pain?
How long does the pain last (duration)?
How often does pain occur (frequency)?
Does anything trigger an attack?
Has the pain disappeared for any time in the past (remissions)?
Is here any aching or burning pain?
Is the face numb or weak?
What medications/treatments have been tried and how effective were these?
Visiting your Doctor
As well as information about your facial pain, it is important to be prepared to discuss any other general health concerns (eg. High blood pressure, diabetes, thyroid, disease, etc) and any prior surgeries. Also come with a list of all the medications you are currently taking.
The doctor will also wish to discuss previous treatments you have had for your facial pain and how effective these were.
You may learn more about Trigeminal Neuralgia and related cranial nerve disorders at these information websites:
www.tnac.org
www.umanitoba.ca/cranial_nerves
The above was prepared in consultation with:
Dr. Anthony Kaufmann
Associate Professor (Neurosurgery)
Janice Nesbitt RN
Nurse Clinician
Center for Cranial Nerve Disorders
Winnipeg Center for Gamma Knife Surgery
Health Sciences Center
Winnipeg, Manitoba, Canada
New members
Barbara Schmidt – Chilliwack, B.C.
Theresia Dorner - Markham, ON
Donations
Lois Henry – Winnipeg, MB
FOR THE TORONTO SUPPORT GROUP:
Richard Price – Pickering, ON.
Jean Anderson – Georgetown, ON
I
N MEMORY OF OUR COUSIN – "Jim Trew"
Kathy Somers – Newmarket, ON
Carole Moxham – Bramalea, ON
Best wishes to Marion Guzik for a speedy recovery. You are in our thoughts Marion – take care of yourself and get well soon!!
These questions have come from the Toronto Support Group:
Since Marion Guzik has indicated that she will step down as President next year, we are wondering how we as members, will have a voice in selecting the next President of the TNAC. We live in Toronto and will not be able to attend the meeting if it is held in Alberta.
With respect to the changes to the bylaws mentioned in the last newsletter, will all paid members have a say in the new bylaws and be given a copy of the old ones so we can see what changes need to be made?
What research is being done in TN (Canada, USA?). If we raise money for research where would we send it?
How do we find out if any of the drug companies would be interested in helping us or in sponsoring a large conference on TN here in Canada?
*****
Life may not be the party we hoped for, but while we are here we might as well dance.
Calgary, Alberta
Next Calgary Support Group Meetings
November 23, 2005
Time: 1:30 pm
Calgary Co-Op Community Room
8818 MacLeod Trail South
Contact Jan at 295-0987 or email calgary@tnac.org
We have developed a list of discussion topics for our meetings. Starting in January we will also alternate meetings between week day and week-end afternoons.
Calgary now has a brochure with information about our support group. Contact Jan for copies.
Lethbridge, Alberta
Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on 2 pm Saturday, Nov 12, 2005 at the Lethbridge Senior Centre, 500 – 11th Street, South, Lethbridge. Contact Marion Guzik at 403-327-7668. or lethbridge@tnac.org
Toronto, Ontario
The Toronto Support Group will meet November 27, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. For more information, please contact Kathy Somers (905 853-9849) or Sandra Arangio (905 284- 9215) or email toronto@tnac.org
If you had TN and now have no pain. If you know someone who no longer has TN pain after treatments we could really use your input, help and encouragement. Please write and tell us your experiences.
The Toronto Chapter is looking for anyone who would like to join us in a low fat recipe collection. We are going to gather low fat recipes, if we receive lots we plan on thinking about making a recipe book that we could sell for fundraising. Join in the fun and mail your recipes with or without picture to: Kathy Somers, kathleen_somers248@hotmail.com or mail to: Kathy Somers, 248 Currey Cres. Newmarket, Ontario L3Y 5M9
We are collecting not just from Toronto members but all of us that have TN. Join in the fun maybe it will make our pain day a little more exciting.
"Remember together we will end the pain"
Have a great November everyone.
Note - Click here to Check the pictures from the Face off on Face Pain Dinner
Vancouver, BC
Vancouver & Lower Mainland Support Group
Saturday, November 26: 10.30 am - 1.30 pm
Speaker: Dr. Chris Honey, Neurosurgeon, Vancouver Hospital
Agenda:
10.30 - 11:00: Talk by Dr. Honey
11:00 - 11.30: Questions for Dr. Honey
11.30 - 1.30: Meeting: Social, Networking, Information Exchange
Contact or for further information: Ann Hopkins 604 732 1673 or email: annhopkins@shaw.ca
So how does everyone like the newsletters lately? Are there any other things you would like to see, any changes, additions, etc? Please let us know what you want and we will do our best. Remember that the newsletter is for you members.
For all of you who have internet access don’t forget to check out our web site occasionally. We have a great forum that everyone can use and there are quite a number of topics. There are also special forums for a few of the support groups. If you wish your support group to have a section please send an email to either Jan or myself.
Winter is quickly approaching us now. I think the older one becomes, the quicker the years whiz by. The leaves are almost all gone from my apple trees and things are starting to look a little barren outside. My grass is still green though as we had so much rain this year. I don’t think things actually ever truly dried up since June. I heard that the Farmers Almanac says this particular area is in for lots of snow this winter – as long as it doesn’t come with weeks and weeks of -40 degree weather then I don’t mind that too much.
I hope you all have a great November. See you all in December. Don’t forget, the next newsletter will be mid December and the one after that will be February 1, 2006
Patty