trigeminal neuralgia association australia...

12
Trigeminal Neuralgia Association Australia Page 1 Trigeminal Neuralgia Association Australia Incorporated. ABN 33 914 644 101 ________________________________________ Making A Difference OUR MISSION: To advocate for the awareness of Trigeminal Neuralgia and related facial pain. OUR GOAL: To have a unified understanding of Trigeminal Neuralgia and other related facial pain resulting in better pain management. OUR VISION: An improved Quality Of Life. September 2013 TNA Australia extends our deepest sympathy and condolences to Jocelyn Stafford on the sad passing of her beloved husband Oscar. Our thoughts are with you at this sad time. We thank Marion Abraham and Kim Koh for representing TNA at the funeral. A huge thank you to Jean Williams for her amazing bonsai plant which she created and nurtured to be auctioned at the Gold Coast conference. She named her bonsai “Treegeminal Neuralgia”. May it give great pleasure to Dr Mark Dexter who was the successful bidder. All funds raised to go towards the TNA conference fund. Our thanks also to Alan and Margaret Moore for transporting the bonsai back to Sydney. Our thanks also go to Mary and Steve Zaccaria for their time and effort selling chocolates as a fundraiser at the conference. Please also support the Flower and Herb growing kits and/or the seed embedded Christmas cards which they are also offering to support TNA. See attachment! A Plea from Irene Help preserve me by sharing the workload. From now on – if you require support, it is best to ring your support group leader first. If you have to ring me, please ring between 12 noon – 4 PM, Monday to Friday only. Sign in sheets – have not been received lately. This is also an area which you could help by doing your bit. I don’t have the energy to chase for it. Thank you Mary Milanovic and Janet Padgham, they have both stepped forward to offer their assistance. Mary has offered to help with the newsletters and I am especially grateful for her help especially at this time when I also have a conference report to submit for the grant we received. Janet has indicated her willingness to take over, butasked to give her 2 years to clear her “foggy head”. Conference feed back I recently attended the Trigeminal Neuralgia Association conference on the Gold Coast arranged by Irene Wood. I found the organisation of the event exceptional. The standard of the lectures extremely high and the sequence of the lectures well thought out. Speakers were easy to approach and happy to discuss the topics. The group was very welcoming to me as a new member. I look forward to the next event. Thank you for all your hard work Irene, a great job. Sincere thanks. Dr Charlotte de Courcey-Bayley BDS Hons (Syd Uni)

Upload: dangnga

Post on 18-Jul-2018

239 views

Category:

Documents


2 download

TRANSCRIPT

Page 1: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 1

Trigeminal Neuralgia Association

Australia Incorporated. ABN 33 914 644 101 ________________________________________

Making A Difference OUR MISSION: To advocate for the awareness of Trigeminal Neuralgia and related facial pain.

OUR GOAL: To have a unified understanding of Trigeminal Neuralgia and other related facial pain

resulting in better pain management.

OUR VISION: An improved Quality Of Life.

September 2013

TNA Australia extends our deepest sympathy and condolences to Jocelyn Stafford on the sad

passing of her beloved husband Oscar. Our thoughts are with you at this sad time. We thank

Marion Abraham and Kim Koh for representing TNA at the funeral.

A huge thank you to Jean Williams for her amazing bonsai plant which she created and nurtured to

be auctioned at the Gold Coast conference. She named her bonsai “Treegeminal Neuralgia”. May it

give great pleasure to Dr Mark Dexter who was the successful bidder. All funds raised to go

towards the TNA conference fund. Our thanks also to Alan and Margaret Moore for transporting

the bonsai back to Sydney.

Our thanks also go to Mary and Steve Zaccaria for their time and effort selling chocolates as a

fundraiser at the conference. Please also support the Flower and Herb growing kits and/or the seed

embedded Christmas cards which they are also offering to support TNA. See attachment!

A Plea from Irene

Help preserve me by sharing the workload.

From now on – if you require support, it is best to ring your support group leader first.

If you have to ring me, please ring between 12 noon – 4 PM, Monday to Friday only.

Sign in sheets – have not been received lately. This is also an area which you could help by doing your bit. I

don’t have the energy to chase for it.

Thank you Mary Milanovic and Janet Padgham, they have both stepped forward to offer their assistance.

Mary has offered to help with the newsletters and I am especially grateful for her help especially at this time

when I also have a conference report to submit for the grant we received. Janet has indicated her willingness

to take over, butasked to give her 2 years to clear her “foggy head”.

Conference feed back

I recently attended the Trigeminal Neuralgia Association conference on the Gold Coast arranged by Irene

Wood. I found the organisation of the event exceptional. The standard of the lectures extremely high and

the sequence of the lectures well thought out. Speakers were easy to approach and happy to discuss the

topics. The group was very welcoming to me as a new member. I look forward to the next event. Thank

you for all your hard work Irene, a great job. Sincere thanks.

Dr Charlotte de Courcey-Bayley BDS Hons (Syd Uni)

Page 2: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 2

I thought the quality of the speakers was exceptional and since this was my third conference the language

was a lot more familiar. Some of the first timers were feeling a bit shell-shocked by the end, but were still

very glad to have come. It is definitely a great opportunity to learn more about your pain.

One of the most important messages I got from the Conference was to make sure you have the correct

diagnosis. As Prof Aggarwal mentioned, someone may present with typical lightning bolt pains, but also

have a red or weeping eye which would then suggest SUNCT or SUNA.

I found Dr Russell Vickers’ address on herbal management for chronic pain and also his work using stem

cell treatment particularly interesting.

The tips for using distractions such as doing something emotionally rewarding (Prof Mackey), relaxation

breathing, cognitive visualisation and other behavioural coping strategies (Dr Helen Boocock) were also

useful. Sometimes when pain is bad it is easy to forget those things.

The fact that Prof Devor is conducting a Gene study is very heartening and gives us hope that there may be

a simple solution for this unpredictable condition. Heartfelt thanks to Irene for putting this all together.

Mary M.

Only 50% of the delegates completed and returned the conference survey form. Generally, all had enjoyed

the conference and that the conference had exceeded their expectations – most considered it an excellent

conference. All had indicated that the conference have improved their confidence in dealing with their pain.

However, many are reluctant for an extended 3rd day – information overload is the main complaint.

I am very touched by the kind gift from members of our MAB – my new “wine glass “– to mark our 10th

Anniversary. Etched on it reads “ For Irene , With Love and Sincere Gratitude from All at TNA 2013”

And to this day, I remain flabbergasted by what

Professor Devor and members of our MAB had done.

Sometime a year ago, they had nominated me for

service worthy of recognition, whatever it is I can’t

recall – I am already well honoured by their support;

and being referred to as an Angel !!

Also, I would like to thank everyone who came to our

Gala Dinner. Firstly, I am/was chuffed that everyone

honoured the occasion. All the guys were dashing with

their bowties and jacket, and the ladies were simply

elegant all dressed up. Thank you all for taking part,

sharing a joke or singing a song.

Finally, I have been convinced that our 6th national

conference will take place in 2 years’ time.

Irene.

Page 3: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 3

A picture paints a thousand words… these are precious moments at the conference.

Doctors spending time with patients, delegates mingling and enjoying mutual support.

Page 4: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 4

Our Gala night… all so impressively scrubbed. We had a grand time celebrating our 10th

Anniversary.

Page 5: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 5

SUPPORT GROUP MEETING REPORTS

Toongabbie Support Group

Toongabbie Public School

"Due to the national election day the school will not be available to us for our meeting. And in view that

some of our members will be away on the following weekend, we have decided to cancel our September

meeting.

Our next meeting will be on the 2nd of November. We are working on a guest speaker for our November

meeting. Please mark in your calendar 2nd of November Toongabbie meeting 1:30 - 4PM. Must Attend.

Marion Abraham

------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

ADELAIDE SUPPORT GROUP SUNDAY 28TH JULY, 2013

PRESENT: Ann T, Paulyne D, Bert J, Kevin S, Faye D, Jill F, Bev & Barry S, Grace A, Jan B, Graham & Liz B.

APOLOGIES: Sue & David H, Kerryn.

WELCOME: A special welcome was given to Bev and partner Barry from Port Hughes.

FINANCES: Opening Balance: $268.43. Income: donations from last meeting $21.00. Member’s donation

$40.00. Interest $0.51. Expenses: Venue hire July/Sep/Nov $81.00; Balance on hand = $248.94.

REPORT

Venue Hire: New terms and conditions for use of the Civic Centre have been received from Burnside

Council:

Hirers must attend a Council Induction Course which includes OH&S and Security; (Should a

member run the meeting in Graham’s absence, he/she must undergo an Induction Course);

All electrical equipment is to be tagged as “checked and safe for use” including guest speaker’s

equipment;

Bookings can only be made up to six months in advance and must be paid for 30 days prior to the

event. (prevents us from publishing our yearly Calendar of meetings);

As a Community Organisation we continue to receive 50% discount; (The cost of venue hire remains

at $27);

Fund Raising: Our idea of compiling a recipe book for TN sufferers with request for recipes was advertised

in the last few Newsletters. It has not generated much interest and Graham will bring it up at the TN

Conference next month.

MEMBERS UPDATES:

JAN: Is doing well on slow release Tegretol. She takes 3 x 200mg. one day and 4 x 200mg. the next. This

seems to work very well for her. Fortunately Jan does not suffer debilitating side effects on this amount.

BERT: Bert had a radio frequency procedure 3 years ago which gave him relief for 22 months. Takes 2 x

300 mg. Lyrica daily. Eating is still painful. He is seeing his Neurosurgeon next week and is prepared to

have a second radio frequency procedure or try another drug with the Lyrica. Strangely, Bert had a

stomach virus for 3 days recently during which time he didn’t eat and his TN did not trouble him at all. Jan

mentioned an article in a TN newsletter regarding a man who dieted before his scheduled MVD, his pain

stopped also negating the need of the surgery!!

GRACE: Still doing well. She has not taken any TN drugs for 5 years since her percutaneous procedure but

her cheek remains numb.

Page 6: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 6

KERRYN: Ann is in contact with Kerryn who lives in the Riverland and gave an update on her condition.

Unfortunately she is not doing well. She is to be admitted to Flinders Hospital in August for a procedure

which involves “scraping the nerve” to remove scar tissue from her previous MVD. Understandably she is

very nervous but prepared to try anything as she is suffering badly.

BEV: told us that her TN came out of the blue earlier this year as she was showering. She had excruciating

pain in her eye socket and electric shocks in the upper ¼ of her face. Washing/drying her face, eating,

talking, blowing her nose, cleaning her teeth, etc. produces pain. Her Doctor asked if she ground her teeth

at night or had ill-fitting dentures of which she had neither. She was diagnosed as suffering from TN and

prescribed Tegretol which she was reluctant to try because, being an ex-nurse, was aware of the side effects.

She tried Lyrica 150 mg. x 2 daily but has discontinued it as she found it of little benefit and caused stomach

upsets. Her pain radiates down the back of her throat particularly when cleaning her teeth. After reading

an article about vitamin B12 she started taking it and has found her pain has subsided a little. She has an

appointment to see Dr. Z next week. Graham had previously loaned her Striking Back which she found

very informative. Bev has spinal problems and wonders if her TN could be related. Bev has a terrible fear

that the pain of an attack would be unrelenting. Bev asked if anyone suffered hair loss with their TN. Ann

did when she took Neurontin, Grace when she took Epilem and Jan has developed facial hair while she is

on her drugs. Bev’s partner Barry expressed his appreciation of the group and now has a better

understanding of the problem and what his wife is suffering.

PAULYNE: Continues to be very well. She was taking 800 mg. Tegretol then changed to Lyrica but was

constantly ‘dozy’. Has managed to reduce her tablets until she is now drug free.

KEVIN: After several years of being told his problem was TMJ, Kevin has been officially told he has TN.

Professor G diagnosed Division 3 TN. At the moment he is reasonably well. He takes 4 x 150 mg. Lyrica

daily. He finds if he lowers the dose his pain increases. Eating is difficult and once he starts eating he has to

continue quickly to get through the pain.

JILL: Also chews rapidly through the pain and cleans her teeth quickly. Her TN started at the age of 38. 16

years ago she had an MVD which cured her. She was told the operation would not last forever. Her pain

has returned and she has difficulty blowing her nose and eating, swallowing is painful. Jill would prefer

not to have a second MVD. She wonders if she may have a slight crack in a tooth which has become

infected but her dentist says there is nothing wrong with her teeth.

FAYE: Has been pain free for several months now and does not need any medication. She is fully aware

her TN may come back at any moment. She has a medic alert should it return because during her attacks

she finds it impossible to speak or eat.* (see below) Faye asked if TN always strikes on the right side of the

face as she noticed when our members were describing their pain they always seem to indicate the right

side of their face. Graham advised that TN can occur on both sides but the right side seems to be more

common. In very rare cases it can occur on both sides.

ANN: Recently underwent a trial procedure using Botox injections. Regrettably, rather than easing the

pain it had the opposite effect and she experienced severe pain. She is just now beginning to feel back to the

same level as she was before.

GRAHAM: It is now over three years since his successful MVD. He has recently begun to have ‘sensations’

in his cheek, particularly if he is stressed, but is well otherwise and pain free.

OTHER BUSINESS

Discussion took place regarding the problems involved with not being able to speak during a severe TN

attack. As well as Medic Alert it was suggested that we keep an information sheet on our fridge door with

similar information. Graham also mentioned the use of an ICE entry on your mobile phone contact list but

was not sure if this is still used by paramedics in SA. He will find out and advise at the next meeting.

Page 7: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 7

eHealth: Graham told members about Personally Controlled Electronic Health Records (eHealth). This is a

Government system which allows your health information to be available on line and accessed if you visit a

different GP or travel interstate. He recommended that members register with eHealth. Further information

is available at www.ehealth.gov.au or tel: 1800 723 471

Graham and Liz are attending the TN Conference in Queensland and will give a report to the next meeting

MEETING CLOSED 4.00 pm followed by refreshments and friendship.

NEXT MEETING: 2.00pm Sunday 29th September 2013. At Burnside Civic Centre, Corner of Portrush and

Greenhill Road, BURNSIDE.

Graham and Liz ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------

SUNSHINE COAST SUPPORT GROUP. Kawana Library, Nanyima Street, Buddina.

Saturday 20.07.13

Present: Jean B, Jean W, Rose W, Dawn S, Jane K, Jill L, Teresa M, Belinda K & James R.

Apologies: Max H & Sherryl M.

New Members: Special welcome to Belinda K & James R.

Phone reports:

Randall has been and had an MVD carried out, all is well except for the numbness.

Financial: Not available.

General business:

Last meeting before the conference. Everybody ready??

Reports:

Jill: Trigeminal Neuralgia for the last four years. Had an MVD (just over a year ago) with terrific success. Jill

has a little numbness on her tongue.

Jean B: Reports that she is going very well for the last 13 months, staying positive that it will stay that way.

Jane K: No Trigeminal Neuralgia for the last couple of weeks. Had a thin cut MRI in Noosa, the result being

a prominent vein across a nerve. Jane uses preventive measures - avoid triggers- wind/cold/air

conditioning/noise etc. The aids that she uses are a warm pack that she holds against her face, wears a

beanie to bed, Zostrix and heat plaster on her trigger points.

Dawn: Looking forward to the conference. Dawn has reported that she is fine at the moment.

Belinda: Diagnosed 1st May, after she went to her dentist. The dentist took some x-rays and found that there

wasn’t a problem with her teeth. Belinda has MS. Her medications include Tegretol, Lyrica and Endone.

Belinda found the support group on the Internet and spoke to Irene, where she was forwarded to our

support group.

James: James was diagnosed 18 years ago with his TN coming on & off over that period. His pain is on his

left side of his face. Now the pain is back for longer periods of time before the pain subsides. Tegretol helps

but causes constipation. James describes the pain as sharp. Jean told him about B12.

Page 8: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 8

Rose: For the last 3-4 months she has had constant nerve action. Not really sharp. Half her tongue is numb

as well as her face. There was a MRI taken and it shows nothing.

Teresa and Jean: are both well.

Meeting closed at 2.30 pm. Jean had to go to work so couldn’t join us for afternoon tea. Everything was left

for other members to carry on regardless.

Next meeting: Saturday 21st of September 2013 Start at 1 PM

NB: Jean now works full time for St Vincent De Paul and is away from her other business. She carries out

the administration of the floor sanding business after hours. If you need to ring her, please ring after hours

when she can talk, or leave a message on her mobile and she will get back to you.

(07) 54 911978 A/H

0419 776475 (message)

MELBOURNE SUPPORT GROUP Room 4, Maroondah Federation Estate, Ringwood

10 August 2013

Colin opened the meeting and welcomed everyone.

Present: (15) Joy & Allan C; Colin P; Will & Joan R, Neil & Joan T; Kaye & Peter J; Evelyn D; Colin S; Jo Z;

Bill P; Emelye L; Michelle M.

Apologies: (14) Alf H; Bruce G; Sue K; Audrey B; Nita & Robert McK, Angela G; Alan W; Jo Z; Steve &

Mary Z; Lauren S, Beryl and Rob H.

Treasurer’s Report: There was a carry forward balance of $863.80, donations of $30.00 at the last meeting, no

expenditure leaving a balance of $893.80.

New member: Emelye was welcomed to the meeting.

General Information:

Future meetings for the year: Meetings for the rest of the year have been scheduled for 12 October and

14 December at the same room and venue. Irene is scheduled to attend the October meeting to share her

research on B12.

Meeting Venue: No further news on whether the group will be able to get the current room at a reduced

cost. Colin has spoken with the venue management but no decision has been made. However, the

bookings have been confirmed for the rest of the year so we will wait for the venue management to

make a decision.

National Conference: Several members of the group will be attending the National Conference on the

Gold Coast.

Support Group Leader: Pleasingly, Kaye and Peter J have volunteered to take over as Support Group

Leaders.

Reports from members:

Colin read out the following email from Lauren:

My name is Lauren I run the TNA Australia Facebook page. I have been a member of TNA Australia for just

over two years now but I work every Saturday during AFL season and am rarely at a Melbourne Support

Group meeting. I have been to a few if they are between Oct-Feb but unfortunately I can never get to the

rest.

Page 9: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 9

I thought I would drop you an email as I know you are having a meeting this Saturday. And sorry I can't

attend.

A little update on myself, I am still successful post MVD in Dec 2010. No pain since, no medication since. I

know I am very lucky. I did take it upon myself after the experience to change my life for the better as a way

of trying to hold off the dreaded reoccurrence of TN as long as I can. I may have told some of you in the odd

meeting or at the last TN conference in the Hunter Valley NSW's that I was thinking of starting to change

my career. Do something a bit more for myself, my health and to not do as much work as I have been doing

in the stressful television industry. I'm happy to announce that after 18 months of study next week I will

receive my diploma in Professional Pilates Instruction.

I have been teaching matt classes and proper studio Pilates sessions (kind of like rehab post physio) as a

student in the CBD for over a year now and I was lucky enough to get a proper job out of it about two

months ago. I now teach two nights a week at a Pilates studio and I am getting amazing reward from

helping people make a mind body connection, feel healthier, have a better quality of life, and more

importantly help those with chronic pain (usually back / shoulder pain, but not restricted to) live life pain

free. In an amazing chance of being in the right place at the right time I also recently had a client who was

struggling through her session and talked about some health issues she had and I gave her some advice and

people to talk to and as it turned out the next time I saw her she was booked in to see a neurologist as her

GP suspected that she may have TN. Fingers crossed she gets the answers she needs.

I have been a little quiet on the Facebook page recently, and for that I apologise. This year has been very

hectic trying to work a busy schedule whilst studying and then whilst getting a second job on top of that so

I let the page slip for a little while but with studies finished I now have a little more time to dedicate to it.

I can report that we have 79 supporters of our Facebook page and though it has been a little quiet of late we

still have people messaging for advice, and others helping sufferers speak to someone who knows what

they are going through. Today I put a Gold Coast man in touch with Irene and Tony and he has plans of

attending Tony's support group meeting on Saturday if he is feeling well enough. He is recently diagnosed

and like many of us on first diagnosis has no idea what to do. I have put your meeting this weekend along

with the others on the site and I am hopeful that people may stumble across the event on the Facebook page

and appear at the meetings.

Colin please say hi to everyone for me. I know I don't pop in that often and I may not have even met a lot of

the people that are in your group now but I want them to all know that I still think of them, I apologise

sincerely for never having the chance to get there but I am still trying to do my bit to help those of us that

suffer from TN, and the families of those that support them.

Have a good meeting and hopefully see you at the next one.

Regards

Lauren

Meeting discussion:

Emelye is new to the group. Emelye is 23 years of age and first suffered progressive facial pain on both sides

of her face in 2008 after suffering from Meningitis. Emelye had been prescribed various medications

including Tegretol and Lyrica which had both caused bad side effects. Triggers of the pain include cold

winds and cleaning teeth.

Discussion was held on attendee’s experiences of MVD (Microvascular decompression). Will advised the

group he had an MVD 5 years ago at the age of 82 at the Epworth Hospital. He was discharged after 72

hours, the operation had been a success and he has been pain free since.

Page 10: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 10

Both Bill and Joan had under gone successful MVD operations. Bill is pain free, however Joan suffers some

pain but finds it is relieved by using capsicum cream.

Evelyn report she is pain free but uses sublingual B12. Discussion was held on the benefits of B12. Irene will

be attending the October meeting to share her research on sublingual B12.

Kaye advised the group her pain has reduced since attending laser acupuncture; Kaye is still taking 100mg

of Endep at night.

John is 36 years old. John suffered from severe facial pain after having his wisdom teeth extracted. John has

tried various ways of reducing the pain from nerve stimulation via a device implanted under the skin to

various medications none had been successful. Six weeks ago John underwent an MVD. At first he was pain

free but after a short time the pain has returned, John is suffering from burning and stabbing sensation but

the electric shocks have stopped. John’s pain is worst in the evenings. John is going back to the surgeon to

seek further advice.

Thank you to everyone for the afternoon tea it was delicious. The meeting closed at 3.30pm for socializing

over afternoon tea.

Thank you again to Kaye and Peter for volunteering to take over the Support Group Leader role.

The next meeting is scheduled for 12th October 2013 in Room 4 at the Maroondah Federation Estate, 32

Greenwood Avenue, Ringwood.

Colin Pearce

BRISBANE SUPPORT GROUP 30 Ridley Rd, Bridgeman Down

August 10, 2013

Attendance: Jeff B, Lorraine B, Sue R, Stefan G, Peter G, Helen W, Rod W, Margaret B, Colin B ,Lee M,

Henry C, Ken B

Apologies: Sally Anne C, Neil F.

Coin donation $37.00

We began our meeting extending a very warm welcome to new members Stefan, Peter and Lee. We then

discussed the upcoming conference and many expressed interest in attending. Again, the outstanding

standard of previous conferences was highlighted.

Jeff outlined his plan for fundraising and said how he was currently involved in this legal Silver Circle

operation which generates $1300 per draw based on Lotto numbers over 6 weeks.

Lorraine is now off Lyrica as it was making her dizzy. She is currently on 600 mg gabapentin and is getting

some headaches. She was previously taking 3x300mg while getting some jabs, but these have now settled.

Lorraine continues on Vitamin B, fish oil, red krill oil and magnesium. Lorraine and Jeff are looking forward

to attending the conference.

Sue is getting worse by the week, and the random nature of the occasional TN jolt is very annoying. She is

on 100 mg tegretol. It is about one year since the MVD which initially eliminated all pain. She is looking

forward to hearing about possible options at the conference.

Stefan’s pain began 5 months ago following injury installing door frames. There is pain in many areas of

face, teeth, occipital area and shoulders with frequent teeth chatter. He has spent one week in hospital. MRI

Page 11: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 11

shows no abnormalities. He has been placed on medication for body tremors. There is extreme jaw pain and

teeth sensitivity with consequent difficulty drinking cold fluids and chewing. Doctors have suggested TN

and dystonia as possible causes.

Peter G said his pain began during a dental procedure. Following a referral to Dr Russel Vickers, TN was

diagnosed. The MRI revealed a benign tumour as the cause of TN. A nine hour operation to remove this

tumour followed. It was not possible to remove all of this tumour, but it was then expected that bit would

be dormant. Peter was then TN free for nine months. A second operation followed which then gave three

years of pain relief, though there was some double vision and deafness. Very severe pain returned in March

this year and MRI indicated tumour return. He was on lignocaine for five weeks. Gamma knife surgery by

Dr Ben Jonker resulted in some pain reduction. Peter takes tegretol, 600mg Lyrica, 25 mg Endep and 3600

mg gabapentin. He will be attending conference.

Helen is relatively pain free. She has experienced a few jabs, and takes 2x100mg tegretol and is likewise

attending upcoming conference.

Margaret B has been going fairly well, but with the dentist visit this Thursday, she is now on 600 mg

tegretol CR, 100 mg gabapentin am and 75 mg Lyrica pm. Colin also takes gabapentin.

Lee thinks she has atypical TN and said her cousin, aunty and great grandmother also were sufferers. Lee’s

pain commenced last September. She experienced teeth pain eating cereal and drinking tea and tried

panadol, aspirin and neurofen. Dental xrays revealed no abnormalities. Pain increased, with a deep boring

sensation, but no electric shock. She commenced tegretol in December witch caused a nauseous feeling and

she was so dazed she could not drive. Pain continued at 600 mg tegretol, with panadol, neurofen and

aspirin. Endone was then prescribed. Lee found she was more relaxed on this and it helped with sleep. With

more pain, she was placed on Lyrica. When this dose increased to 2x300mg, she could not drive. Soon after

this, all pain ceased and she has reduced her medication to 2x150mg. She still gets the occasional small jab

and wonders if she is in remission.

Henry has continued to be almost completely TN pain free for a very long period following monthly neo

cobalamin injections. He did have one bad relapse in June with shocks for one hour. He commented that he

then realised that he was overdue at that time for another shot. Pain then once again vanished.

Ken was on 600 mg tegretol and 1200mg gabapentin last January. Shocks decreased and he has continued to

enjoy remission with just a dull ache.

Next meeting will be on the 10th of October 2013.

Tony MacPherson

DISCLAIMER

The information provided in this Newsletter is of a general nature only and is not intended to replace

medical advice. Any views of a medical or therapeutic nature expressed are the views and opinions of the

author and are not necessarily the views of Trigeminal Neuralgia Association Australia.

Before considering or undertaking any medical or therapeutic treatment described please seek advice from a

Qualified Medical Professional.

Trigeminal Neuralgia Association Australia does not accept liability for any adverse consequences that may

arise from following any treatment or advice described in this Newsletter.

This Newsletter remains the property of Trigeminal Neuralgia Association Australia. No part of this

Newsletter may be copied without the express written permission of the Trigeminal Neuralgia Association

Australia. ©

Page 12: Trigeminal Neuralgia Association Australia Incorporatedtnaaustralia.org.au/wp-content/uploads/2015/11/TNA-Aust-Newsletter... · Trigeminal Neuralgia Association Australia Incorporated

Trigeminal Neuralgia Association Australia Page 12

2013 Meeting Dates State Group Date & Time Venue Group Leader/s

ACT

Canberra

TBA

Barbara Byrne Room

Labour Club, Belconnen

Local support

Jan Goleby

02 6254 6640

NSW

Sydney

2nd November

1:30 – 4:00 pm

Toongabbie Public School

Cnr Fitzwilliam & Binalong Rds

Kim Koh

02 97431279

Kim Smith

02 97691947

Sydney

CBD

5th October

10:00 – 12:30 pm

St. James Parish Hall,

Level ONE, 169 Phillip St.

Sydney CBD

Irene Wood

0413 363 143

QLD

Brisbane

10th October

1.30 -4.00pm

30 Ridley Road

BRIDGEMAN DOWN

Tony MacPherson

07 3822 2286

Sunshine

Coast

21st September

1:00pm

Kawana Library,

Nanyima Street, Buddina

Jean Williams

07 54911978

S.A

Adelaide

29th September

2:00pm

Burnside Town Hall

Civic Centre

Cnr Portrush /Greenhill Rd

Graham/ Liz Boyer

08 8392 2781

TAS

Launceston

TBA

Punchbowl Christian Centre

100 Punchbowl Road

LAUNCESTON

Irene Wood

0413 363 143

VIC

Melbourne

10 October

1.30 – 4:00pm

Maroondah Federation Estate,

32 Greenwood Ave

RINGWOOD

Colin Pearce

03 9874 1359

This Newsletter remains the property of Trigeminal Neuralgia Association Australia. No part of this

Newsletter may be copied without the express written permission of the Trigeminal Neuralgia Association

Australia Inc. ©

The Publisher reserves the right to reject, alter, or refuse to use any material supplied in the Publisher’s

sole discretion or disapprove of any information that is deemed not suitable.

Contact: TNA Australia, PO BOX 1611, CASTLE HILL, NSW 1765 Australia Tel: 02 4579 6226;

Email: [email protected] or [email protected]