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Timnsd12

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Reply with quote  #1 
Hi My name is Tim and I live in San Diego, CA. I have been struggling with CVS for years.  Finally was diagnosed in October 2016.  I know the struggle and I wanted to form a network of Adults/Caregivers with CVS in the Southern California area to maybe share info on strategies, doctors, and help and support. If you are in the Southern California Area please reach out to me. Thank you.
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Timothy
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wynnak

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Reply with quote  #2 
Good idea, Tim. Also contact the CVSA office and let Debbie know you area trying to do this.
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Blynda
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kf

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Reply with quote  #3 
Hi Tim,

I am in southern Orange County and visit San Diego with some frequency as we have close friends there. My CVS began in 2006, but like many I was not diagnosed until years later.  

I have seen a doctor at UCLA in the past but unfortunately I am allergic to two of the drugs - cyproheptadine and amitriptyline - used together with propranolol as a prophylactic measure.   While I started at the high end of CVS in 2006 my current pattern is fairly low (compared to others who post) at attacks roughly quarterly.  Please let me know if you do manage to put together a group as I would be open to meeting others in the area.

Best of luck,
K

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Timnsd12

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Reply with quote  #4 

Hi Karen,

Thank you for getting in touch with me. I am on amitretyline now. It seems to be helping a bit. I will keep you posted on the group. There are two specialists at UCLA Dr. Richard Boles and Dr. Kirsten Tillisch. Have you heard of them or seen them?


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Timothy
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wynnak

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Reply with quote  #5 
Tim,

Dr. Boles hasn't been at UCLA for a few years. He is in private practice now and he is pediatric focused.


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Blynda
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kf

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Reply with quote  #6 
Hi Tim,

I saw Emerin Mayer.  

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Karen
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jojo2059

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Reply with quote  #7 
Hi Tim, my name is Jolynn and I have a special needs adult age 27 with CVS.  We live in Northern California, San Jose area called Mountain View.  I wish they would hold seminars in our area.  Its great you are putting together a group in your area.  I should do one here as well.  I will be looking forward to your posts from your group.
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