#MHAMBC Migraine & Headache Awareness Month #10: Ocean’s Eleven: Who’s part of your Migraine/Headache Disorders care team? What essential roles still need to be filled?

June Migraine awareness month

I have gotten behind on my blogging due to an extended Migraine cycle, so I am trying to catch up. Due to recent tragic events In the CMA Community, it is more important than ever to get the word out so that people understand Chronic Migraine Disease.

 

My Current Migraine Team is in the process of transition. I’m currently in search for a couple of key players in my team as I have not felt comfortable with the lack of services recently not provided. I thought it was good in the past, but time for a revamping to better meet my Medical Needs.

Primary Care: My PCP I have only had since late in the fall of 2012. Her office is close by which is convenient but there are times when she’s not available-she is out of that office on Friday‘s and her nurse practitioner takes over for any emergency visits, but I am not comfortable with her. It’s just a personality clash as I’m sure she’s fine. My former PCP I had for many years and I stopped seeing him after he was taking care of my migraines before he referred me to a Specialist and then refused to see me for Migraine Emergencies when my Specialist was not available.

Psychological support: My therapist is great. She is patient, understanding, helpful and I feel comfortable in talking to her about anything and everything. I will not change this part of my care team as I don’t think she can be topped.

Neurologist: I have been through 4 now in the past 25 years. My recent Neurologist was very helpful until he was not available for a Migraine Emergency a couple of weeks ago. I have never called the after hours emergency number in the almost 2 years I’ve seen him and the one time I did he was not available-he never returned my call. I was told by the call center rep that the doctor called “them” and said the Infusion Center” would take care of it. I never got info on where or what the infusion center was and how to get there. I was in total agony and had a melt-down. My husband called the next day which was a Friday and was told by the after hours answering service (I found out then he’s out on Friday’s as well) and my husband was told that instructions were left to NOT call him on a Friday with a Migraine Emergency!! WHAT!! He’s a neurologist whose specialty is Migraines and he suffers them himself and he leaves instructions for no one to page him for Migraine Emergencies??!! On that Friday he called many places frantically looking for someone who would take me, even my own former and current PCP refused to see me. Well, my current PCP’s Nurse Practitioner said she would not intervene because she didn’t have my neurologist care plan. What care plan!! Not one going on at that time. So I suffered the weekend in devastating pain doing all I could do and on MONDAY, FOUR days into my attack the neurologist office called me w/info to get to the Infusion Center because you need Dr. Orders before you can go there. So I rush there driving on my own, God only knows how I made it w/a level 8-9 Migraine, but I did and spent about 5 hrs there.

So the moral of this story is when you do get a Migraine Specialist find out in ADVANCE what the protocol is for Migraine Emergencies and God forbid it falls on a weekend or a Friday. But get all that information in advance, preferably on your 1st visit so you know what to do for when you have an emergency like this. I REFUSE to go to the ER and be treated like a 3rd class citizen and drug seeker and not get help. I’ve heard way too many horror stories from family, friends and online support buddies. Just check out this post and this is how Migrainers are commonly treated when they go to the ER to seek help: http://ohwhatapain.wordpress.com/2013/06/11/my-emergency-room-experience-i-e-our-healthcare-system-needs-work/

Pain Clinic: Last week I just had my 1st visit with a Pain Management Specialist. He has 30 yrs of Anesthesia and Pain Management Experience, Diplomate of the American Academy of Pain Management and is a Member of American Society of Interventional Pain Physicians. This is my 1st experience with seeing a Specialist in this field and I am hopeful with his plans for me that even if it’s a small change for the better than it’s better than no change at all. So I am eagerly anticipating what lies ahead in terms of procedures that have not been tried yet.

So what am I missing? I need to find a new neurologist if necessary, hat is if the pain management doesn’t work out. I use to go to a Headache Specialized Clinic and stopped after a year of going every 2 months due to the strain and disruption of my schedule. And they didn’t really help me anymore than my regular MD was doing at the time. They were just experimenting with different medications for me. After all, Migraine Disease is nothing but a hit and miss Disease-trying all sorts of hand-me-down meds to try to find the right combination for preventive care, and trying different sorts of abortive meds is some fail over time. So we shall see how it all pans out.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

 

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