Generic name: Phenytoin sodium

Dilantin is an antiepileptic drug, prescribed to control seizures. It is used sometimes for the treatment of Trigeminal neuralgia, most often in an emergency setting where it is given intravenously to people with an acute TN attack. This is the drug recommended on the cards that the TNAC has available to its members. This card can be given to the emergency room staff if you need to go to the hospital during an acute attack.

Dilantin is a drug that needs to be taken regularly. It is important that you strictly follow the prescribed dosage regimen and tell your doctor about any condition that makes it impossible for you to take Dilantin as prescribed.

Usually you will be prescribed smaller amounts, increasing over a given period of time until an adequate level is reached.

Store at room temperature away from light and moisture.

Like other drugs used to treat TN, this one has side effects too: If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine whether it is safe for you to continue taking Dilantin.

More common side effects may include:
Decreased coordination, involuntary eye movement, mental confusion, slurred speech

Other side effects may include:
Abnormal hair growth, abnormal muscle tone, blood disorders, coarsening of facial features, constipation, dizziness, enlargement of lips, fever, headache, inability to fall asleep or stay asleep, joint pain, nausea, nervousness, overgrowth of gum tissue, Peyronie's disease (a disorder of the penis that causes the penis to bend on an angle during erection, often making intercourse painful or difficult), rapid and spastic involuntary movement, skin peeling or scaling, skin rash, tremors, twitching, vomiting, yellowing of skin and eyes

Tell your doctor if you develop a skin rash. If the rash is scale-like, characterized by reddish or purplish spots, or consists of (fluid-filled) blisters, your doctor may stop Dilantin and prescribe an alternative treatment. If the rash is more like measles, your doctor may have you stop taking Dilantin until the rash is completely gone.

Because Dilantin is processed by the liver, people with impaired liver function, older adults, and those who are seriously ill may show early signs of drug poisoning.

Practicing good dental hygiene minimizes the development of gingival hyperplasia (excessive formation of the gums over the teeth) and its complications.

Avoid drinking alcoholic beverages while taking Dilantin.

Dilantin does interact with many drugs so it is essential that you talk to your doctor and/or pharmacist about any drugs you are currently taking. Some non-prescription and foods that you should avoid include: alcohol, anti-acids containing calcium, Ulcer medications, and Salicylates such as aspirin,

Hyperglycemia (high blood sugar) may occur in people taking Dilantin, which blocks the release of insulin. People with diabetes may experience increased blood sugar levels due to Dilantin.

Abnormal softening of the bones may occur in people taking Dilantin because of Dilantin's interference with vitamin D metabolism.

An overdose of Dilantin can be fatal. If you suspect an overdose, seek medical attention immediately.

Symptoms of Dilantin overdose may include:
Coma, difficulty in pronouncing words correctly, involuntary eye movement, lack of muscle coordination, low blood pressure, nausea, sluggishness, slurred speech, tremors, vomiting

TNAC is now into its 3^rd year of Incorporation and a lot of progress has been made. The membership in our Organization, I am happy to say, is growing everyday.

It is surprising what Support Groups can do, and now that Vancouver is up and running hopefully we will be able to do the same in Edmonton. The Toronto and Calgary Groups are doing well, and the Lethbridge group has been going since June 2000. Ottawa is still on hold for the time being. We still have many more Provinces to go, but eventually we hope to have support groups in each province.

Our Newsletter "The TNAC News" has been greatly appreciated and improved along with our website www.tnac.org .

Jan Williams, our Calgary Support Group Leader, is now the Webmaster of our Website www.tnac.org and a co-editor of the TNAC News. We would like to thank Patty for the many hours over the past 5 years that she donated in setting up both the newsletter and the website. Her contributions have been greatly appreciated, and it is now time for others to share responsibilities and take some of the pressures off her.

We welcome more members from across Canada to help Patty and Jan with the newsletters. Perhaps an "editorial team" can be established. What a great way to involve our members. Please contact Patty or Jan if you wish to help with this Newsletter.

The TNAC is now on fairly solid ground and in the position for more of our members to become actively involved. Election of Officers will be held in August, 2006, and I would appreciate your input of nominations by March l, 2006 for the positions of President, Sec./Treas, and 3 Board Members, which can and probably will be increased.

Our Annual General Meeting will be coming up August `13^th, 2005, and we urge our members to actively participate in this meeting, whether it be in person, email, surface mail or telephone.

Annual General Meeting Proposed Agenda:

1. President’s Report

2. Sec./Treas. Report

3. Discussions:

Setting up of a Conference Line so that members from across Canada can be involved in the Association.

Mona Leslie and myself have started on this project but it is temporarily on hold due to unforeseen circumstances. We definitely need help in this area.

It has been suggested that we should have co-editors or an editorial team for our Newsletter. I do think this is a good suggestion as this could be anyone from across Canada that is interested in submitting material for the newsletter.

I think it is time that if Dr. Kaufmann can and is willing to get some Doctors that are willing and interested in TN to set up this Board. This is only a suggestion, but perhaps we can suggest names to Dr. K and, as he is the Medical Advisor for the TNAC would then be able to pursue it further.

Should you have a topic or opinion for discussion, I would appreciate if you would contact me before July l, 2005, so that it may be put on the Agenda

I have placed an order (15) for the new Striking Back Books. This book has 528 pages as compared with 256 of the old book. I haven’t seen it as yet, but Ann Hopkins in Vancouver says it is very, very good . They will be offered on first come first serve basis.

Thank you and hope you all have a pain-free summer.

Marion

The next meeting will be on June 22, 2005 at 1:30 pm in the Community Room at the MacLeod Co-op, 8818 Macleod Trail South. There will be no meeting in July. Contact Jan at 403-295-0987 or email calgarytnac@hotmail.com for more information.

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, Jun 8, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. For more information please contact Marion Guzik at 403-327-7668.

Please mark your calendars for our Pot Luck barbecue on July 9, 2005, 4 pm, at Besty & Jake Groenenboom's in Nobleford. Ph. 824-3375 for directions or take Hwy 23 to Nobleford, go straight north 2 miles and then turn left off highway 1/4 mile (gravel road). Look for balloons on turn off. See you there.

The Toronto Support Group will meet on Jun 30, 2004, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. For more information, please contact Dana Lavrence at 905-886-7563, Sandra Arangio (905) 284-9215 or Kathy Somers (905) 853-9849

The next meeting will be June 18, 2005 at 10:30 am at the GF Strong Rehab center; 4255 laurel Street. Contact: Ann Hopkins - Ph. 604-732-1673 - email: annhopkins@shaw.ca

Helen Marceniuk, Spedden, AB

Jim Van Loo, Lethbridge

There goes the theory that Grandmas know everything!

Little Tony was staying with his grandmother for a few days. He'd been playing outside with the other kids for a while when he came into the house and asked her, "Grandma, what is that called when people are sleeping on top of each other?"

She was a little taken aback, but decided to tell him the truth... "It's called sexual intercourse, darling."

Little Tony just said, "Oh, OK" and went back outside to talk and play with the other kids.

A few minutes later he came back in and said    angrily, "Grandma, it is not called sexual intercourse! It's called Bunk Beds!"

Some of the Non-traditional Treatments used for TN (out of 30 respondents):

Acupuncture (16), Chinese Medicine (1), Chiropractic (7), Cold laser therapy (1), Cranial Sacral Massage (3), Healing touch (1), Homeopathy (3), Light & Colour therapy (1), Massage therapy (1), Neck Adjustments – Naturopath (1), Pain Clinic (1), Polartherapy – injections into nerve (1), Vitamin B1 (2), Magnets (1), Botox (1), Zostex cream (2).

Other procedures/treatments tried (out of 30 respondents):

Injections in cheek (1), Lysine (1), Physio therapy (1), Tens machine (1), Vitamin B6 daily (1), Vitamins (1).

Surgical Treatments performed (out of 30 respondents):

MVD (11), Radio-frequency Rhizotomy (3), Glycerol Injection (4), Radio-frequency Coagulation (1), Balloon Compression (1), Alcohol Injection (1), Cranectomy / compression operation (1).

Things that TN sufferer’s do during an episode (out of 30 respondents):

Apply heat, apply ice, avoid brushing teeth, avoid drafts & air conditioning, avoid shaving, bed rest, chew gum, count quickly, cry, endured pain, extra exercise, grin & bear it, hide, hold cheek firmly, hot compresses, increase medication, light exercise, little or no movement, medication, meditate, no cold food/drink, orajel, pillow over face, pray, press on wall with hands, relax facial muscles, remain inside, sip warm liquids, sleep, stretches, tai chi, take 222’s, Tylenol 3’s, use plastic silverware, wear scarf/hat for bad weather, eat soft food, avoid talking.

Some telephone conversations

Customer: "I've been ringing 0700 2300 for two days and can't get through to enquiries, can you help?"
Operator: "Where did you get that number from, sir?"
Customer: "It was on the door to the Travel Centre".
Operator: "Sir, they are our opening hours".

Samsung Electronics
Caller: "Can you give me the telephone number for Jack?"
Operator: "I'm sorry, sir, I don't understand who you are talking about".
Caller: "On page 1, section 5, of the user guide it clearly states that I need to unplug the fax machine from the AC wall socket and telephone Jack before cleaning. Now, can you give me the number for Jack?"

On another occasion, a man making heavy breathing sounds from a phone box told a worried operator: "I haven't got a pen, so I'm steaming up the window to write the number on".

John has some minor pains and is taking small amounts of Tegretal – about 10% of what he needed pre- rhizotomy. He is pleased with the results.

Ron had a return of his TN within a few weeks of the BCR – and had a repeat procedure done after 6 months. Now he is pain free. He has some numbness but is able to start decreasing the drugs.

Jill remains pain free. She has no residual effects from the BCR.

Marilyn has some numbness which is slowly decreasing. The numbness that bothered her the most was in and around her eye. However, since the BCR she has had no TN pain.

Dear Pat,

Just to let you the neuralgia that my mother has came back again. She didn't have it for a year and it came back. She is suffering.

If there any information that you can give me in regards to dealing with the pain besides medication.

…L.B. Oakville Ontario

Sorry to hear that your mother is having problems with Trigeminal Neuralgia.  This is one stubborn and nasty disease.  However, having said that there are options available to reduce or stop the pain.

Your mother has already been introduced to medications.  In about half the people that is all they ever need.  However in the other 50% of the people find the side effects unbearable or the drugs loose their effectiveness.

Before I go on, one word about drugs, there are some newer drugs on the market right now with fewer side effects.  That includes Trileptal for one.  Two other drugs are currently being tested in Canada and hopefully will receive government approval shortly.  Those are Pregabalin and Tectin.  Check out the April and May TNAC newsletters for more details at www.tnac.org  - click on Newsletters.

Although some people have experienced relief using non traditional medicine it seems for the majority the best treatment is from surgery.

Since trigeminal neuralgia is caused by the irritation of that nerve by a blood vessel sitting on it, the only "cure" is to move the vessel and stop it from touching the nerve.  This surgery is called Microvascular Decompression (MVD).  Unfortunately it is major surgery.  The MVD relieves pain in 80-90% of the people and the average length of time people remain pain free is 20 years.

There are other procedures to treat the pain by damaging the nerve so that the pain impulses are interrupted.   These are called Rhizotomies and are performed by a neurosurgeon.   A needle is passed through the cheek into the skull near where the nerve originates and the trigeminal nerve is damaged either by pressure using an inflated balloon, chemically using glycol or by heat.  About 80-90% of the people will have good pain relief (either 100% gone or greatly reduced) and this lasts for a few years before the nerve heals and the pain returns.   These procedures are done as day surgery and can be repeated as needed.

Finally, the nerve can be damaged using radiation – a machine called the Gamma Knife is one used often.  This, too, is a day procedure not requiring overnight hospital stays.  After the treatment, it takes up to 2 weeks for the effects to show and 55-60% of the people will have good pain relief that lasts for 5-8 years – the same as the Rhizotomies.

Here are some web sites you can check out for more information and if you have any questions I can answer please contact me.

Dr. Anthony Kaufmann & the Centre For Cranial Nerve Disorders:
http://www.umanitoba.ca/cranial_nerves/ccndhome.htm

Trigeminal Neuralgia Association United Kingdom:
http://www.tna.org.uk/

Trigeminal Neuralgia Association of the USA:
http://www.tna-support.org/

Dr. Christopher Honey,  Stereotatctic and Functional Neurosurgery at the University of British Columbia  http://www.interchg.ubc.ca/choney/

Patty’s Ponderings

Hello everybody and happy June to you all. It’s been a great spring so far here in southern Alberta with the exception of the lack of some much needed moisture. Hopefully we’ll get some rain soon though.

I’m still suffering with tendonitis in my wrist so I’ll be short on comments this month. Hopefully this will heal soon – I hate typing with only one hand!

There will be no July 1 issue of the newsletter this year. We are going to incorporate the July and August issues together and the publication date will be July 15^th. Everybody is just so busy during the summer. We may also try to incorporate December and January into one issue also – what are your thoughts on this?

I have a couple of things that I’ve been pondering that you may also want to think about. For example:

1. There's always a lot to be thankful for if you take time to look for it. For example, I am sitting here thinking how nice it is that wrinkles don't hurt.

2. Just exactly how long is a ‘moment’? I suppose it depends on which side of the bathroom door you are on.

3. If Wal-Mart is lowering their prices every day, then how come nothing is free yet?

I hope everyone has a wonderful summer. Take care.

Patty