| February, 2008 Newsletter on the Conference |
 |  |  |
I owe a great deal of thanks to Jean Myers, Frank O’Connell and Marlene Brenner who helped me go
through the list of names to find out why our numbers have gone from 30 to 20 down to 10.
We got a big surprise when we found out that there are a lot of disconnected numbers, people who cannot
drive anymore, wrong numbers, people who want to spend time with their grand kids (which, when you have
the chance you should) and some who have passed away. I sent out cards to those people.
So, unfortunately I know that our group will build up again since I have talked with new people and there
were lots of people at the Regional Conference this past January 26, 2008 which was a huge success!!! I
had so much help from people I can’t remember all their names. There was Lenora Sears, Carlin from
Stockton, Marlene Brenner, Dorothy Harbour, Delores and others I sorry that I can’t remember. All I
know, there was lots of help.
I thought that it would be much better to have others who attended the conference to give their opinion
about it, so I asked a few people to give their thoughts about it. I am so greatly appreciative to those
who sent in their thought and they are great thoughts. Thank you all. Cherie, SGL
Regional Conference at UCSD January 26, 2008
I have been a member of the Trigeminal Support Group for approx. 3 years now and it has helped me
tremendously. I don’t know what I would have done without it. As many of you, when I found the support
group I was ready to jump out of my skin with pain. Cherie, our group leader helped me get to the right
doctors and helped me through those first critical months. Thank God, because of her, my doctor,Dr. Schim
and my medications, I am now under full control, at least for the time being.
I want to tell you all a little about the Regional Conference that was held here in San Diego a few weeks
ago. For those that attended you know what an enlightening experience it was and for those who did not,
you really missed out. It was such a wonderful, helpful and informative time and a chance to personally
speak one on one with the doctors who came and gave lectures. I personally was very excited to go to the
conference and it far exceeded all my expectations.
In the beginning of the conference we had a short talk on the different types of TN and their symptoms. I
have heard some of this in the past, but I did learn many new points. One of the things that particularly
interested me was about headaches. I now suffer terribly from almost daily headaches. There was a lot of
information given on this subject and how it can be helped and controlled. I am very interested in the Botox
treatment for headaches.
We also discussed, in length, about the many different types of pain, such as orafacial pain, dental pain and
chronic pain. Did you know that pineapple could cause you to have facial and other pain? I will never eat
another one!! Jeanne Jones a local Nutritionist that is world-renowned gave a great talk on different eating
styles. One, which is very good for people with TN, is a Gluten Free diet. Dr. Jones is also has TN patient.
I suffer from a few different illnesses such as chronic pain from a neck and back injury. I got a lot of
information as to how to deal with that and the stress that goes with it. We were told that you go through
3 different Chronic pain phases called The struggle of what is; 1) Have it, Don’t want it; 2) Want and don’t
have and 3) Have something that you pretend that you don’t. Dr. Steven Hickman PsyD gave this talk and
also suggested that we buy the book Managing Pain Before it Manages You. He also does a class called
Mindfulness, Base Yoga and Stress Reduction. His phone number is 1-858-822-6868 if anyone is interested.
The doctors talked a lot about the medications used for TN and what is new. We talked about surgeries
and treatments. At different points in the seminar the doctors would have a panel in the front of the room
and answer questions. At times the responses were unanimous and sometimes we had disagreements. It was
very interesting to hear all of the different points of view from these specialists that flew in specifically
for the Regional Conference.
Well, I don’t want to take up the whole newsletter so I think I should close for now. I could go on and on
about the conference. It was so wonderful and informative. We had a lot of people there many from San
Diego that were not aware we had a Support Group. I think our small group will start to grow again and we
will start having wonderful speakers again. I do hope that more and more people come to our meetings as it
saved me and I know that each and every one of you has something to contribute at our meetings that may
save someone else. Remember we are always there for you!!!
Dear Cherie,
Just want to let you know how helpful and informative the TNA Regional Conference was for me---someone
who hadn't even heard of TN until 18 months ago---and is now looking for all information about it and its
treatments.
The explanations and charts presented by the doctors made it very clear what could be expected from their
treatments and how they were accomplished.
The presentation of James Pietrek was especially interesting because it was explicit in what chiropractics
has to offer in the relief of facial pain. Apparently it was equally interesting to others also because so
many questions were posed to him during the panel discussion.
Thank you for all the work you do to keep us informed.
Helen Dynes
TN Newsletter Article – Lenora C. Sears
I really didn’t want to attend the TN Conference after it was postponed to January.
I had arranged to ride with a friend who lives nearby but he had to cancel and now I would need to drive
myself. The conference would be an all day affair and lately I had been having some mild “break-through”
episodes since my MVD procedure in December 2006.
I knew it would be a tedious day and I wasn’t sure I was up to the demands. Fortunately, I arranged to
drive along with Cherie. While helping with registration, I met people from all over the state and some from
out of the country. Along with a cup of tasty decaf and a pastry, I was on the right track when the
conference began.
There were several topics of interest that fit my level of recovery:
Dr. James Pietrek DC of Pietrek Spinal Care, spoke about NUCCA (National Upper Cervical Chiropractic
Association). He briefly explained the procedure followed by trained NUCCA practitioners which can be found
online at http://www.pietrekspinalcare.com/index.html.
I found Dr. Jack Schim of The Neurology Center in Encinitas especially informative regarding TACs
(Trigeminal Autonomic Cephalgias). Dr. Schim spoke of the symptoms of cluster headaches involving redeye
and waking up with pain. He also referenced TACs in connection with Occipital Neuralgia and Fibromyalgia,
both with which I have had personal experiences.
Steven Hickman is a PsyD at UCSD Neuropsychiatry & Behavioral Medicine. Dr. Hickman talked about living
with chronic pain and how neuropsychiatry can help manage that pain. Many times we’re asked to describe
our pain on a scale of 1-10. Dr. Hickman clarified the pain levels as being two fold, i.e. a pain level of 9
could mean 2 of distress and 7 of sensation or 2 of sensation and 7 of distress. For me, this was a new
way of measuring pain in a two dimensional way. Dr. Hickman describes “stress being a struggle with what
is”. (You have something and don’t want it OR there’s something you want but don’t have OR you have
something and pretend you don’t have it.)
Dr. Hickman said that it’s important that we cultivate a relationship with pain. I found this quite profound
and want to know more about it.
The day was long but the conference was well worth a Saturday spent engaging with conversations with
others about TN. Most noteworthy was the experience of listening to renowned specialists in the field of TN
and Chronic Pain. I considered it a day well spent in the presence of cutting- edge experts, no pun intended!
A Note from Brittany Solomom, Project Coordinator for a UCSD/VA
Research Study
My name is Brittany Solomon and I am the Project Coordinator for a UCSD/VA research study comparing
two behavioral (non-medication) treatments for chronic pain. I recently came across information about the
San Diego Trigeminal Neuralgia Association Support Group and it looks like many attendees of this group may
be interested in and benefit from participation in this study (or have a family member of friend who would).
I was wondering if you would be interested in having a member of our research team speak about the
project at an upcoming meeting in support for safe, alternative treatments and long term management of
chronic pain.
Because these behavioral treatments (Cognitive Behavioral Therapy and Acceptance and Commitment
Therapy) are intended as complementary strategies to existing pain treatments, we want participants to
keep their treatments stable while they are involved in the study (i.e, we are not looking to take individuals
away from their current practitioners).
We offer a free evaluation, no-cost behavioral treatment in the format of weekly group sessions, and
monetary compensation for participants in the study. Please let me know if you would like more
information.
Thanks for your time and feel free to either respond to this email or call me at 858-552-8585 ext. 2904.
Sincerely,
Brittany C. Solomon, B.A. (c.o Julie Wetherell, Ph.D., Associate Professor
and Director) Project Coordinator, Chronic Pain Project, VA San Diego Health care System
3350 La Jolla Village Dr.
Building 13- 4th Floor
San Diego, CA 92161
TEL: (858) 552-8585 ext. 2904
FAX: (858) 552-7404
Return to Home Page
through the list of names to find out why our numbers have gone from 30 to 20 down to 10.
We got a big surprise when we found out that there are a lot of disconnected numbers, people who cannot
drive anymore, wrong numbers, people who want to spend time with their grand kids (which, when you have
the chance you should) and some who have passed away. I sent out cards to those people.
So, unfortunately I know that our group will build up again since I have talked with new people and there
were lots of people at the Regional Conference this past January 26, 2008 which was a huge success!!! I
had so much help from people I can’t remember all their names. There was Lenora Sears, Carlin from
Stockton, Marlene Brenner, Dorothy Harbour, Delores and others I sorry that I can’t remember. All I
know, there was lots of help.
I thought that it would be much better to have others who attended the conference to give their opinion
about it, so I asked a few people to give their thoughts about it. I am so greatly appreciative to those
who sent in their thought and they are great thoughts. Thank you all. Cherie, SGL
Regional Conference at UCSD January 26, 2008
I have been a member of the Trigeminal Support Group for approx. 3 years now and it has helped me
tremendously. I don’t know what I would have done without it. As many of you, when I found the support
group I was ready to jump out of my skin with pain. Cherie, our group leader helped me get to the right
doctors and helped me through those first critical months. Thank God, because of her, my doctor,Dr. Schim
and my medications, I am now under full control, at least for the time being.
I want to tell you all a little about the Regional Conference that was held here in San Diego a few weeks
ago. For those that attended you know what an enlightening experience it was and for those who did not,
you really missed out. It was such a wonderful, helpful and informative time and a chance to personally
speak one on one with the doctors who came and gave lectures. I personally was very excited to go to the
conference and it far exceeded all my expectations.
In the beginning of the conference we had a short talk on the different types of TN and their symptoms. I
have heard some of this in the past, but I did learn many new points. One of the things that particularly
interested me was about headaches. I now suffer terribly from almost daily headaches. There was a lot of
information given on this subject and how it can be helped and controlled. I am very interested in the Botox
treatment for headaches.
We also discussed, in length, about the many different types of pain, such as orafacial pain, dental pain and
chronic pain. Did you know that pineapple could cause you to have facial and other pain? I will never eat
another one!! Jeanne Jones a local Nutritionist that is world-renowned gave a great talk on different eating
styles. One, which is very good for people with TN, is a Gluten Free diet. Dr. Jones is also has TN patient.
I suffer from a few different illnesses such as chronic pain from a neck and back injury. I got a lot of
information as to how to deal with that and the stress that goes with it. We were told that you go through
3 different Chronic pain phases called The struggle of what is; 1) Have it, Don’t want it; 2) Want and don’t
have and 3) Have something that you pretend that you don’t. Dr. Steven Hickman PsyD gave this talk and
also suggested that we buy the book Managing Pain Before it Manages You. He also does a class called
Mindfulness, Base Yoga and Stress Reduction. His phone number is 1-858-822-6868 if anyone is interested.
The doctors talked a lot about the medications used for TN and what is new. We talked about surgeries
and treatments. At different points in the seminar the doctors would have a panel in the front of the room
and answer questions. At times the responses were unanimous and sometimes we had disagreements. It was
very interesting to hear all of the different points of view from these specialists that flew in specifically
for the Regional Conference.
Well, I don’t want to take up the whole newsletter so I think I should close for now. I could go on and on
about the conference. It was so wonderful and informative. We had a lot of people there many from San
Diego that were not aware we had a Support Group. I think our small group will start to grow again and we
will start having wonderful speakers again. I do hope that more and more people come to our meetings as it
saved me and I know that each and every one of you has something to contribute at our meetings that may
save someone else. Remember we are always there for you!!!
Dear Cherie,
Just want to let you know how helpful and informative the TNA Regional Conference was for me---someone
who hadn't even heard of TN until 18 months ago---and is now looking for all information about it and its
treatments.
The explanations and charts presented by the doctors made it very clear what could be expected from their
treatments and how they were accomplished.
The presentation of James Pietrek was especially interesting because it was explicit in what chiropractics
has to offer in the relief of facial pain. Apparently it was equally interesting to others also because so
many questions were posed to him during the panel discussion.
Thank you for all the work you do to keep us informed.
Helen Dynes
TN Newsletter Article – Lenora C. Sears
I really didn’t want to attend the TN Conference after it was postponed to January.
I had arranged to ride with a friend who lives nearby but he had to cancel and now I would need to drive
myself. The conference would be an all day affair and lately I had been having some mild “break-through”
episodes since my MVD procedure in December 2006.
I knew it would be a tedious day and I wasn’t sure I was up to the demands. Fortunately, I arranged to
drive along with Cherie. While helping with registration, I met people from all over the state and some from
out of the country. Along with a cup of tasty decaf and a pastry, I was on the right track when the
conference began.
There were several topics of interest that fit my level of recovery:
Dr. James Pietrek DC of Pietrek Spinal Care, spoke about NUCCA (National Upper Cervical Chiropractic
Association). He briefly explained the procedure followed by trained NUCCA practitioners which can be found
online at http://www.pietrekspinalcare.com/index.html.
I found Dr. Jack Schim of The Neurology Center in Encinitas especially informative regarding TACs
(Trigeminal Autonomic Cephalgias). Dr. Schim spoke of the symptoms of cluster headaches involving redeye
and waking up with pain. He also referenced TACs in connection with Occipital Neuralgia and Fibromyalgia,
both with which I have had personal experiences.
Steven Hickman is a PsyD at UCSD Neuropsychiatry & Behavioral Medicine. Dr. Hickman talked about living
with chronic pain and how neuropsychiatry can help manage that pain. Many times we’re asked to describe
our pain on a scale of 1-10. Dr. Hickman clarified the pain levels as being two fold, i.e. a pain level of 9
could mean 2 of distress and 7 of sensation or 2 of sensation and 7 of distress. For me, this was a new
way of measuring pain in a two dimensional way. Dr. Hickman describes “stress being a struggle with what
is”. (You have something and don’t want it OR there’s something you want but don’t have OR you have
something and pretend you don’t have it.)
Dr. Hickman said that it’s important that we cultivate a relationship with pain. I found this quite profound
and want to know more about it.
The day was long but the conference was well worth a Saturday spent engaging with conversations with
others about TN. Most noteworthy was the experience of listening to renowned specialists in the field of TN
and Chronic Pain. I considered it a day well spent in the presence of cutting- edge experts, no pun intended!
A Note from Brittany Solomom, Project Coordinator for a UCSD/VA
Research Study
My name is Brittany Solomon and I am the Project Coordinator for a UCSD/VA research study comparing
two behavioral (non-medication) treatments for chronic pain. I recently came across information about the
San Diego Trigeminal Neuralgia Association Support Group and it looks like many attendees of this group may
be interested in and benefit from participation in this study (or have a family member of friend who would).
I was wondering if you would be interested in having a member of our research team speak about the
project at an upcoming meeting in support for safe, alternative treatments and long term management of
chronic pain.
Because these behavioral treatments (Cognitive Behavioral Therapy and Acceptance and Commitment
Therapy) are intended as complementary strategies to existing pain treatments, we want participants to
keep their treatments stable while they are involved in the study (i.e, we are not looking to take individuals
away from their current practitioners).
We offer a free evaluation, no-cost behavioral treatment in the format of weekly group sessions, and
monetary compensation for participants in the study. Please let me know if you would like more
information.
Thanks for your time and feel free to either respond to this email or call me at 858-552-8585 ext. 2904.
Sincerely,
Brittany C. Solomon, B.A. (c.o Julie Wetherell, Ph.D., Associate Professor
and Director) Project Coordinator, Chronic Pain Project, VA San Diego Health care System
3350 La Jolla Village Dr.
Building 13- 4th Floor
San Diego, CA 92161
TEL: (858) 552-8585 ext. 2904
FAX: (858) 552-7404
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