By Kathy Somers

We can offer support and understanding to each other.  It helps to know that you are not alone, and that there are others that suffer from the same pain as you, and that someone can truly understand what you are going through.

We can share information about our experiences and each walk away more knowledgeable. This includes doses and side effects of medication and different surgical procedures.  Perhaps some people have tried some alternative medicine that might interest others.

Family members can join in and talk to other supporters and share information on how they feel.

Meeting new people and making new friends is always a rewarding experience. You will feel less isolated and alone, and perhaps this will help to ease some of your pain.

TN can affect a whole family – not just the person who has the disease.  Most people with TN are very fortunate to have family and friends around them who understand and offer moral support.  We have two letters, one from a husband and one from a daughter of a TN patient

Hi Folks.

My name is Dennis, and I’m the “better half” (sometimes she lets me say that) of Kathy Somers. Some of you know Kathy as the Toronto and Newmarket Group Leader for CATNA. While Kathy has TN, I have a rare nerve disorder of my own, known as Myasthenia Gravis. The reason I mention this, is that it puts both Kathy and I in the position of sufferers and caregivers for each other.

I think as a caregiver the most important way we can help, is being supportive and patient with the sufferer.

Of course we show compassion for family members we love, or we wouldn’t be caregivers in the first place. But whether you are young and single, raising a family, or retired, the pace of life these days just doesn’t slow down because we are suffering in some manner.

There are lots of times I’m sure, that Kathy would love to be able to give me some of the energy that she seems blessed with to help me on my bad days. And we sure wish we could take away the terrible face pain that Kathy, and too many of you, have to endure. While we can’t do those things, we can be supportive in lots of day-to-day ways.

For me at least, there have been times when Kathy is talking to someone in person or on the phone, and without warning she can’t talk for a few minutes. If I happen to be handy it takes nothing for me to grab the phone or explain to the person that she’s having an attack, and maybe help in the conversation or get her point across for her. Little things like trying to shield her face from the wind in a parking lot or open area, or getting something out of the oven so the heat blast won’t trigger her TN, or asking restaurant staff for a change of seating so we aren’t under an air conditioning vent, or letting her sleep as much as she needs on the bad days and filling in as much as possible, are not too much to ask.

And as I mentioned: patience. I think this is very important! If there is anything good about getting older I suppose being more patient is a good one. However, at any age or point in life we all know how frustrating things can become even without pain or illness. For myself tasks or projects that used to take an evening or weekend to do now can take a week or several weeks to do if they get done at all. This is something that Kathy has been most patient and understanding of, and I am most grateful.

If at all possible, all TN patients and hopefully their caregivers, should try working on adjusting their life styles and priorities to better deal with, and demonstrate, the patience that is so necessary to getting on to the next level and a brighter future.

I would like to thank all you folks, either TNers or caregivers who come to the meetings, dinners, walkathons, trade E mails, make phone calls, share info or ideas, in other words, support each other. It means the world to Kathy and for that I thank you.

All the best to all of us, “together we will end the pain “!

 Dennis Somers

+++++

My name is Nadia Arangio and my Mom Sandra has suffered with Atypical TN for almost 7 years. 

In the beginning we thought her pain had something to with her teeth and we thought that a few Dentist visits would cure things.  When we did find out that it was in fact a nerve in her face that was causing so much pain we did not know how to react or what to expect.

Our whole family spent hours looking for answers on the internet because it seemed like no doctors could tell us anything.  We found out a lot about TN and I truly believe the most helpful thing we found for her was the support group. 

As a family it has been hard to watch our Mom and Wife be in so much pain and not be able to help.  Many  times I wish I could take the pain for her just so she could be spared; if only for a day.  

We have tried to support her as much as we could.  We went with her to Doctor’s appointments, supported her decision to take the trip to Winnipeg and finally to have the MVD in Toronto.   We also try to help her cope with the pain on a day to day basis.

We have heard from some that this pain may never go away, but I refuse to believe that.  I pray everyday and wish every chance I get that, there will be a cure found and I believe some day my prayer will be answered and my wish will come true.

+++++

We are looking for people who are willing to be the voice at the other end of the telephone for someone who needs to talk.  If you are willing to allow us to share your name, phone and/or e-mail, please contact us.  Read what one person has said after talking to a telephone support person:  

Hello Jan,

I just can't tell you how much I appreciated talking to you last weekend. I was in really, really bad shape and it was good for me to reach out (I'm a bit of a loner) and find some one who actually understands the incredible pain this illness applies and how debilitating it is.

            The meds are no longer working - so I'm seeing my neurosurgeon again.  You've given me the courage to at least examine the surgical options. 

My name is Pauline and I have had TN for just over 20 yrs. It started with a pain in my front tooth, so I went to the dentist to see if the nerve in my tooth was dying. It was not, but my dentist thought it might be TN. He also said that I didn’t have enough of the symptoms.

Later on, I went to my G. P. because I had more pain developing in my cheek. He looked it in a book and also told me that I had T.N. and suggested that I see a neurologist. That is how my TN started.

I started taking Baclofen, 11 a day, 10 mg each, and only had intervals of no pain.  I kept increasing my medications, Gabapentin (Neurontin) 5400 ml day, and Lamotrigine (Lamictal) 9 day, 25mg. ea. during this time no more pain.

In March 2006 I had an MVD surgery at Toronto Western with Dr. Tymianski but there was nothing found at this time that caused my pain. I am now still on the same medication and trying to decrease slowly, starting with Baclofen. I am down to 7 a day and no pain, and still on the same amount of the other 2 drugs

By Valerie Brooks

Capsaicin is the ingredient found in different types of peppers, such as cayenne peppers, that makes the peppers hot.  Capsaicin cream is a topical analgesic and may be sold under the brand names Zostrix, Axsain or Capsaisin-HP.

When it’s applied to the skin, Capsaicin has been found to relieve pain by reducing substance P, which is found at nerve endings and is involved in transmitting neuralgic and arthritic pain signals to the brain. Pain relief is not instantaneous after application as it is the cumulative depletion of substance P over a period of weeks that brings the full effect.

You can apply the cream to your skin up to 4 times a day. Apply a small amount and use your fingers to rub it well into the affected area so that little or no cream is left on the surface of the skin afterwards.  Avoid thick application of capsaicin topical.

You may feel a burning or itching sensation the first few times you use the cream, but this will gradually decrease with each use.  Heat, humidity, bathing in warm water, or sweating may increase the sensation.  Reducing the number of doses of Capsaicin that you use each day will not lessen the sensation and may lengthen the period of time that you feel this sensation. Also, reducing the number of doses you use may reduce the amount of pain relief that you get.

            Capsaicin must be used regularly every day as directed if it is to work properly. Even then, it may not relieve your pain right away. The length of time it takes to work depends on the type of pain you have.  Neuralgia pain relief has been found to begin within 2 to 4 weeks, although with head and neck neuralgias, relief may take as long as 4 to 6 weeks.

            Wash your hands thoroughly after each use to avoid getting the cream in your eyes or other moist mucous membranes, where it can cause a burning sensation. Do not use the cream on areas of broken skin.

            If capsaicin gets into your eyes or on other sensitive areas of the body, it will cause a burning sensation. If capsaicin gets into your eyes, flush your eyes with water. If it gets on other sensitive areas of your body, wash the areas with warm (not hot) soapy water.

            Although Capsaicin is unlikely to affect medication, vitamins or herbal products you should talk to your doctor or pharmacist before use.  You may not be able to use Capsaicin or you may require a dosage adjustment or special monitoring.  Avoid using other topical products on the treated area without talking to your doctor or pharmacist.

By Kathy Somers

I will be walking in Toronto for sure just like last year. If you have TN and can't walk but have friends or family that might like to come out, to support us that would be great.  2 to 3 % of MS patients have TN. I also just read that they are more likely to have it bilaterally.

Sunday April 15th. Check in time 8:00 a.m., walk starts at 10:00 a.m. Sunnybrook Park (Leslie & Eglinton). I will be doing the 5 km walk or as much as my face will allow. Last year was a beautiful day and I was able to do the whole walk.
            For earlier registration dates and more information www.mssociety.ca/ontario/scwalk_toronto.htm

            I have registered as a captain and our group name is ONTARIO TRIGEMINAL NEURALGIA ASSOCIATION. or you can find it under my name KATHY SOMERS.  This is a great way to get some exercise and great way to spend the day with family and friends.

My husband has a handicapped sticker for parking so last year we were able to drive the van right down into the park for anyone who needs be where it is warm. Just watch for the blue van with the  "CANADA TRIGEMINAL NEURALGIA SIGN"

I will have signs for anyone who isn't shy about wearing one!  Please let me know if you are coming so I have an approximate head count to watch for everyone!      

If you have HBC rewards with Bay, Zellers, Home Outfitters, or www.dealsoutlet.ca  YOU CAN DONATE YOUR POINTS TO THE MS SOCIETY. If you have collected points and don't use them or know what to do with them this is a really good way to put your points to use.

Kathy:  905-853-9849 or toronto@catna.ca

Note: the MS walk occurs in different cities on different dates.  Check with your local MS office for the date of your city’s Walk.  Let us know if you are walking so we can share the stories in the next newsletter.

To everyone who has made donations to CaTNA this year:

• Kathy Somers – in memory of a loved one

• Christine Wheeliker

• Helen Brown

• Vern Reynolds-Braun

• Bernice Balyk

• Chris Goodman

• John Block

Also a big thank you to everyone who has (or who will) organize a support group meeting.

Hello Jane,

            Congratulations on all the progress you have made in reorganizing the TNAC.  There is a lot of work in keeping such an organization going.

            We wish to formally invite all TNAC members to attend any support group from the Canada TNA Network.  Our meetings are open to everyone including TNAC members.  Although we appreciate the support, it is not necessary for people to be members of CaTNA.  

We have support groups in Calgary, Saskatoon, Regina, New Market, West Toronto and Thornhill.  We hope to have more locations this spring.

            Please feel free to share this information with your members.  Thank you.

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All information provided on this website is for educational purposes only and should not be used as a substitute for qualified medical advice.     CaTNA webmaster
Last modified: 03/31/09.