The TNAC News

 Volume 5, Issue 1

January 1, 2005 

Multiple Sclerosis (MS) is an inflammatory disease of the central nervous system (CNS) - that's the brain and spinal cord. The nerve fibers in the CNS that transmit information like an electric wire, are surrounded and insulated by tissue called MYELIN. Myelin helps the nerves conduct electrical impulses properly. In MS the myelin is lost and replaced by scar tissue (plaques). When this happens the nerve is no longer able to function normally.

MS symptoms vary widely depending on exactly where the plaques are located and each person may have different symptoms. The disease normally strikes people between 20 and 50 years of age. Some people have mild cases of MS with little or no disability. Others have full-blown MS that confines them to a wheelchair. The disease in most people will have periods of acute symptoms followed by periods of remission with few or no symptoms.

The first symptoms of MS will often affect the eyes leading to optic neuritis, visual loss, and/or double vision. Other common symptoms include loss of coordination, poor balance, vertigo, hearing loss, muscle spasms, loss of strength in an arm or leg, and sometimes electrical-type pain or tingling in the limbs. Most people complain of extreme tiredness. In approximately 5% of MS patients, the symptoms include trigeminal neuralgia on one or both sides of the face. The pain of trigeminal neuralgia is thought to occur because of the loss of the insulation on the trigeminal nerves within the brain and short circuiting of the signals.

Whenever a patient with trigeminal neuralgia is very young, has bilateral symptoms or has a history of other neurological symptoms, MS is may be the cause. The diagnosis of MS is made with the help of an MRI which will identify plaques in the CNS.

The treatment of trigeminal neuralgia in an MS patient will follow the same guidelines as for "typical" TN. TN in MS patients is normally first treated with anticonvulsant drugs like Tegretal, Trileptal, Dilantin, Neurontin, or Baclofen.

If these drugs fail to provide good pain relief or if the side effects become intolerable, a rhizotomy is the usual next step. An MVD is usually not effective in treating TN in the MS patient.

Neurontin was first developed in the 1990s and is used primarily for the treatment of neuralgia (like Trigeminal Neuralgia) and seizures.

The drug is eliminated from the body through the kidneys and has a half life of 5-7 hours.

Neurontin® is contraindicated in patients who have demonstrated hypersensitivity to the drug or its ingredients.

Neurontin® may cause dizziness, somnolence and other symptoms and signs of CNS depression. Patients should be advised neither to drive a car nor to operate other complex machinery until they have gained sufficient experience on Neurontin® to gauge whether or not it affects their mental and/or motor performance adversely.

Laboratory Tests

Special blood tests are not required while taking Neurontin.

Antacid (Maalox®): Maalox reduced the effectiveness of gabapentin. It is recommended that gabapentin be taken at least 2 hours following Maalox administration.

Gabapentin has been shown to be fetotoxic in rodents, causing delayed ossification of several bones in the skull, vertebrae, forelimbs, and hindlimbs. Therefore it is not recommended for pregnant women.

It is not known if gabapentin is excreted in human milk and the effect on the nursing infant is unknown. However, because many drugs are excreted in human milk, Neurontin® should be used in women who are nursing only if the benefits clearly outweigh the risks.

Safety and effectiveness in pediatric patients below the age of 12 years have not been established.

ADVERSE REACTIONS

The most commonly observed adverse events associated with the use of Neurontin®, were somnolence, dizziness, ataxia, fatigue, and nystagmus.

Less common side effects are malaise, edema, weight gain, hypertension or hypotension, migraines, heart palpitations, bowel problems, painful joints, osteoporosis, vertigo, and bleeding problems (like a nosebleed).

Neurontin® is given orally with or without food.

The effective dose of Neurontin® is 900 to 1800 mg/day and given in divided doses (three times a day) using 300- or 400-mg capsules or 600- or 800-mg tablets. The starting dose is 300 mg three times a day. If necessary, the dose may be increased using 300- or 400-mg capsules or 600- or 800-mg tablets three times a day up to 1800 mg/day. Dosages up to 3600 mg/day have been well tolerated in long-term clinical studies. The maximum time between doses in the T.I.D. schedule should not exceed 12 hours.

If Neurontin® is discontinued this should be done gradually over a minimum of 1 week.

Here are the results on the Neurontin from the Questionnaire that was recently done. Of the 27 people who returned the questionnaire, 13 have tried or are currently using Neurontin.

Dosages ranged from 100mg to 3800mg per day.

Effectiveness: None (3), Poor (2), Barely (2), very little (1), good (1), and 6/10 (2). The other 2 returned did not give any results for Effectiveness.

Side Effects: None (2), Blurry vision (1), Clumsiness/Loss of Balance (2), Weight Gain (1), Tired/Drowsiness (5), Tremors (1), Fuzzy thinking (2).

Hope you all had a wonderful and pain free Holiday. It doesn't seem possible that another year has come and gone, but it has. The year 2005, hopefully will be beneficial to the TNAC. I would like to see the TNAC grow to host a few conferences, and the only way that this can be achieved is by way of funding. I have put out this request before and I appeal to all our members again- "We are in desperate need of funding and need a fundraiser person". If any of you can do this or know of someone who does, please let me know.

Great News for all you good folks in B.C. Dr. Kaufmann will be speaking to you on January 15th, 2005. Please see flyer in this newsletter.

  I want to thank Ann Hopkins of Vancouver for her willingness to co-ordinate the presentation of Dr. Kaufmann. This is a tremendous opportunity to get a Support Group started in the Vancouver area and I hope that all you members will attend and bring your families.

  Until next month,

 Marion

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on Jan 18, 2005 at Confederation Park Senior Centre; 2212 13^th St. NW. Contact Jan Williams at 403-295-0987 for more information or email calgarytnac@hotmail.com.

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, Jan 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.

This meeting with be the Lethbridge group delayed Christmas get-together. We invite everyone to join us.

The Toronto Support Group will meet on Jan 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

Don Brewer - Lethbridge, AB - (Don had an unrelated surgery)

Robert Dunlop - Ottawa, On

Donations:

Denise Mallette – Grand Forks, B.C.

Jim Van Loo , Lethbridge, AB

In Memory of Anne Howard - Vera Cail, Camrose, AB

MAGNETISM SENDS PIGEONS ON WAY HOME: Study: Scientists find magnetite particles in upper beak a guide

Paris: Scientists believe they have confirmed theories that homing pigeons are able to carry out their long-range navigational feat thanks to tiny magnetic particles in their upper beaks.

Pigeon watchers had squabbled as to whether the birds return to their lofts by using this material, called magnetite, as a microscopic compass, or by using different odours in the atmosphere as signposts.

University of North Carolina researcher Cordula Mora placed homing pigeons in a specially-built wooden tunnel which had a feeder platform at each end and magnetic coils attached to its top and bottom. The birds were trained to go to one particular feeding tray if the Earth’s natural magnetic field was left undisturbed and to the other tray if the coils were switched on.

What Mora’s team found was that the birds suddenly lost this navigational ability when magnets were attached to their beaks or if their beaks were anesthetized? The ability was also disrupted if the trigeminal nerve, which carries optical signals to the brain, was severed. But it was not impaired at all if the olfactory nerve, which sends odour signals to the brain, was cut.

The findings point to magnetite as the navigational aid, although optical clues – another theory is that pigeons also use the direction of the sun as a pointer – cannot be ruled out. Still unresolved is the puzzle about how the brain is able to receive the signals from the magnetite.

The Province NEWS A43 – Thursday, November 25, 2004

Question- Denise Mallett- Grand Forks, B.C.

The reason I am writing is because of the above clipping from the Vancouver Province. As it is so rare that I run across reference to the trigeminal nerve, this jumped right out at me. Then it got me thinking. First of all – pigeons have this nerve?? But really, I started to think of the operations I read about and if the trigeminal nerve sends optical signals to the brain, isn’t there a great danger of causing blindness? In all the readings I have pored over, newsletters, etc. I have never run across this info that the nerve sends optical messages to the brain".

The sited article suggests that the optical signals transmitted by the trigeminal nerve in pigeons are crucial for the navigational activities of these birds. The reader questioned whether the optic functions of the trigeminal nerve may be damaged as a result of TN related surgeries, leading to blindness.

In humans, vision information from the eye is carried back to the brain by the optic nerves, not trigeminal nerves. However, the first division of the trigeminal nerve (ophthalmic division or V1) is necessary for feeling or sensation of the eye, especially the clear cover called the cornea. This nerve carries the signals of pain or irritation when you get dust in your eye or worse yet have a scratch or abrasion of the cornea. When corneal sensation is lost due to injury of V1, the warnings of irritation or pain are also lost and continued damage to the eye may occur without being felt.

Injury to V1 is most commonly encountered among TN sufferers as a result of percutaneous rhizotomy procedures such as radiofrequency, balloon compression or glycerol rhizotomies. This may occur in 1 to 5% of people undergoing these procedures, and is less common after Gamma Knife rhizotomy or microvascular decompression surgery, but can still occur. This complication rarely results in permanent injury to the eye, or blindness. However, people who have lost corneal sensation must be cautious to protect their eye from dust, and see a doctor quite urgently if their eye becomes red or looks irritated, since there may be dust or injury on the corneal that they cannot feel.

On the forum, someone asked about donating blood if you have TN. According to both the Canadian Blood Service and the American Red Cross, TN and/or the drugs used to treat it, do not disqualify a person from donating blood. So, if you are a blood donor and wish to continue they will be happy to see you!

Visit our forum www.tnac.org/talk

I'm not sure when I had my first attack of TN but I would guess approximately fifteen years ago, when I was fifty-two.  It started out with mild attacks when I was cleaning my teeth or when someone brushed against my cheek.  The attacks gradually got stronger and more often.  Neither my doctor nor my dentist knew what was happening, so needless to say I lost several teeth and suffered the attacks without the benefit of medication. 

In 2000 my nephew developed the same problem (he lived in another city) and was diagnosed with TN.  I told my doctor this and he agreed it could be TN and prescribed Tegretal and referred me to a Neurologist.  Before my appointment was due I had an attack I won't forget.  After having a CT scan and an MRI it was confirmed I had TN and was to continue with Tegretal 200mg. 

While visiting in B.C. from Nov. 1/00 to May1/01 I began having attacks that Tegretol alone would not control.  I was then prescribed Neurontin 300mg three times daily along with the Tegretol.  After returning to N.B. I tried several times to eliminate the Neurontin but with no success.  I tried a Chiropractor for a few months but had limited success.  It was suggested to me to use heat on my face during an attack but it only made the attacks more painful and frequent.

Several months ago I was outside on an extremely windy day with my face covered.  I had a severe attack.  Since then I find I am very sensitive to the wind and cold. I am now on Tegretol 200mg four times daily and Neurontin 300mg three times daily and still experience mild attacks.

I have learned a great deal about TN since becoming a member of the TN Association for example from the News Letters, Striking Back Book, Dr. Kaufman's tape and TN suffers letters etc.

I would be very interested in hearing about other TN sufferer’s experiences with TRILEPTAL.

Connie Allen

Miramichi, N.B

jcallen@nbnet.nb.ca

On Nov 01 I had MVD surgery at Toronto Western performed by DR Tymianski. He found a nerve resting on the nerve but not in the normal spot, he had to search it out. This is where experience pays as he has performed over 200 of this type of surgery. The operation started at 10:30 and was over at 1:30 I spent 24 hours in ICU and another 24 on a ward before being released on Nov 03.

I remember waking up from surgery with a headache but no TN pain. I was attached to an IV and monitors checking my vitals. My BP was high but not a concern to the doctor.

I stated to cut back on the drugs immediately. Before the operation I was on 1200mg Tegretol, 3200mg Neurontin, 60 mg oxycontin and 30mg codeine. Today for the first time in 10 years I am pain free and drug free.

On Nov 14, less than two weeks after surgery, we left for a week's vacation in Cuba, something that we had planned and booked in June. The doctor assured me that I would be OK to go and the sun would be good for my recovery. He was right.

The only after effects are that I tire very easily – or - maybe I am just babying myself a bit. My hair has grown over the incision and it has healed very well. I hope my experience will help others.

Don Fletcher

don.fletcher@cogeco.ca

I have had TN since September 1999. It appeared suddenly as I was driving home from the city one night. The first pain was associated with a blinding flash of light and visual problems and so I was first investigated for a detached retina. A Neurologist, diagnosed Trigeminal Neuralgia the first time he saw me. He gave me Tegretal. Within a few days after taking my first dose, the pain receded for the most part. This worked for about 6 months and then I needed to increase my dosage. The side effects were debilitating though. Nausea, short-term total memory loss, vertigo, vision trouble, headaches, plus others.

In December 2001 I had an MVD done by Dr. Kaufmann. At that time, I couldn’t brush my teeth, wash my face, have the shower on my face, wear my eyeglasses, have the slightest breeze on my face, eat or sleep well. The day before my surgery, I was having the TN pains about 15-20 per minute.

My surgery went well. When I woke up, I knew immediately that the TN pain was gone. But, my neck was extremely painful and stiff and I had an absolutely horrific headache. The headache lasted for 2 days. The stiffness in my neck stayed. By the end of 3 months, I still had the stiff and sore neck, facial numbness on the right half of my face, numbness behind my ear area, a big hollow depression along the incision, headaches, tingles on the right side of my face, tongue numbness on the right side, and a feeling of ‘pressure’ inside my head along the incision area. I had another CT scan. The results of the scan showed a small infarction on the right side of my brain. My family physician told me that this might have been the result of a small ‘mini stroke’ possibly at the time of surgery or very shortly after while I was recuperating at home.

At this time, it has been 3 years since my MVD. I am still experiencing some of the same symptoms as I was 3 months following the surgery along with some others. My neck is very stiff and aching constantly. When I turn it in any direction, I can hear small crunching and crackling sounds. The numbness is now concentrated along the incision area and certain areas on the right side of my face. The hollow depression remains. My headaches have worsened both in the degree of severity and frequency. The right side of my tongue still tingles along with certain areas of the side of my face. The ‘pressure feeling’ comes and goes and seems to be regulated along with the severity of my headaches. My lower right jaw seems to ache constantly. I have some very problematic things happening in my right ear. It won’t ‘pop’, sounds hollow constantly, I always hear sounds inside of it. This is a real problem because I do a lot of singing on stage and it is affecting this. There is also a problem of soreness in the incision area. If I run my fingers with very little pressure along the incision area, I have varying sensations including noises, soreness and outright pain. Lastly, starting in early December, 2004 I have had a number of experiences where it feels like ants are crawling over the right side of my face, tongue, right ear and right side of my skull.

In spite of these problems I am still in far better shape now than I was prior to surgery. I consider myself to be a qualified "success" story.

Patty Moyer, Coaldale, AB

pgmoyer@telusplanet.net

A male gynecologist is like an auto mechanic who never owned a car. -Carrie Snow-

I hope everyone had a great holiday season. It’s hard to believe that another year has come and gone so quickly. I think they go by faster as we get older.

This issue of the newsletter is packed with lots of really good stuff. I want to thank all of you who have submitted items. There are a few things that we couldn’t fit into the January issue but rest assured they will be published in the near future.

I have summarized the information from the questionnaire’s that were handed in and I want to thank everyone that returned theirs. If you haven’t returned your questionnaire, it isn’t too late! Just mail or email it to me and I will add your input to future results.

What we are going to do is to break up the information into parts. Then we will put a couple of parts at a time into upcoming newsletters. By doing it this way I think you will be able to digest all of the information easier. We will be featuring a ‘drug of the month’ section in the next few newsletters and we will put the questionnaire results from Questions 1 and 2 (drugs you are on or have previously taken) corresponding with the drug of the month. I think this will be helpful for you all reading the results in this way. In the February issue, we will publish results of say Questions 3 & 4 for example, and so on until all the questionnaire results have been published.

Please keep submitting items to us. Without your help, the newsletter will die. We need your TN stories, hints, tips, etc.

Have a look also at our web site ( www.tnac.org ). We’ve been changing a few things and trying to make it look more professional. A big thanks to Jan Williams, the Calgary Support Group Leader, for all her help with it – we wouldn’t have anywhere near such a nice site if it weren’t for her help. The forums are starting to be used more and more every day also which is just great. There are entries on some of the forums from non-members too so we know that our site is being looked at worldwide. Please feel free to take part in one or more of the forums or even start your own topic. Maybe someone would like to start an ‘Easy to Chew TN recipe forum’ and people could post recipe’s that are easy to eat when you are having a TN attack. I’m sure you could think of other topics to use too. Use your imagination. They don’t all have to be about medication or TN Stories – there could be some for ‘happy things’ too. All I ask is that you participate please.

That’s it for this month. I wish you all the very best in the New Year.

1514 Lakemount Blvd., Lethbridge, AB T1K 3K4

SATURDAY, JANUARY 15^th, 2005