Alright well I told you all how our first day went we did some touristy stuff and went to the president’s reception to meet and greet people. I also had quite the cluster attacks and did not sleep one bit that night due to the pain. At one point I still had shadows but felt I could slep with an ativan to relax my anxiety, well that worked but no anxiety needed BOOM a second KIP 10 both lasting upwards of 3 hours! The shadow from that last one was so bad I was blinded literally for about an hour. Once I could see again I proceeded to type the articles you’ve seen released lately.
Despite my agonizing night I made the best of it by catching up on work to make the best of the insomnia and this weekend I have caught up on almost everything especially a stack of emails that needed to be sent. At about 7:45am I woke my mother up and told her we needed to be getting ready soon if we were to have breakfast prior to the first day of presentations. Breakfast went well I had a plain bagel with cream cheese and soem coca cola for my remaining level 9 migraine(I no longer have any migraine meds they don’t work). So anyways after an awful night we work our way into the conference room carrying more crap than anyone: a large camera, a cane, an Oxygen Condenser/O2 generator w/ nasal cannulas, and of course my huge laptop bag. That’s not even counting the pocketbook full of abortives and big box of prophylactic medications too. So we sat right next to a water cooker with tons of cups so that I’d be well hydrated and that allowed me to keep my little O2 generator plugged in chugging along at 2 LPM. Then I pulled out my fully charged chromebook, got online, and prepared to live tweet.
I was also browsing the donated items for the auction and for the raffle since the money goes to a good cause and one close to my heart. Out of generosity and a desire to help since many of us are financially strained and every last dollar counts I donated 4 $25 Amazon gift cards which I bought through Amazon smile so the Cluster Busters got a percentage of that too! Then after buying our raffle tickets and placing them in bags for different prizes I sat back down and waited for conference organizer Lee Markins to get things kicked off for the morning! Then the infamous Bob Wold brought us up to date on what has been achieved and what will be going on in the future with the Cluster Busters and with Cluster Headache treatments which was quite an encouraging talk. Bob is certainly a unique individual and I applaud him for all he’s done over these past few years. After Bob Wold the president of the flourishing organization that’s Cluster Busters wrapped up the next speaker to take the podium was Jonathon Stahler. Jonathon is the Legislative Director for Senator Chris Coons and came to speak about advocacy but mainly what’s done in DC and your local area in terms of politics. I enjoyed his advice but wish he’d talked a lot more about other aspects of advocacy like building grassroots movements or organizations, I’d also love to have hear about how important it’s just for people to share their story because normal people don’t know how many cluster headache sufferers are out there. We need to tell our stories and in doing so we are becoming advocates by nature you will become more informed as you delve deeper and deeper into treatment. I certainly am not saying his talk was bad though he actually provided a lot of great information as to when to contact our congresspeople and senators. He also taught us the best methods of contacting them which is quite helpful and will come in use from now til Headache on the Hill when many of us reunite again! Thanks to Jonathon I will be making a huge push for legislative change in New York.
Next up was one of my favorite speakers Dr. Brian E. McGeeney, is a neurologist at Boston Medical Center and full time faculty (Assistant Professor of Neurology) at Boston University School of Medicine. Dr McGeeney is a Diplomat of the American Board of Psychiatry and Neurology, with the added qualification in Pain Medicine. Dr McGeeney is also boarded by the American Board of Pain Medicine and holds the United Council on Neurologic Subspecialties board in Headache Medicine. Thanks to the conference agenda and the ClusterBusters for that information! Obviously Dr. McGeeney is a brilliant guy and fortunately he’s on our side. In fact he came to his first Cluster Buster conference as an audience member who only mentioned his field when asking a question of a panelist! We are all so excited that he’s such an accepting individual and very accepting of however patients get relief just like my own headache specialist. Dr. McGeeney spoke about “Exploring Cluster Headaches” and taught me several new cools statistics and facts:
- Median onset age of 29 and roughly 1 in 1000 get them, Cluster Headache is more prevalent in men
- Cluster Headache is characterized by distinct short sided one side headache pain manifesting in the eye or the cheek
- 10-15% of sufferers are chronic which is 1 year without remission periods or less than 1 month remission periods
- Cluster Headaches seem to trend upward in the fall early morning is when the beast likes to attack 1-2am at night
- 4.5 men suffer Cluster Headache for every woman though it’s not at all known why that is
- It’s ESSENTIAL to be properly imaged for Cluster Headache get a CT scan and an MRI to confirm it isn’t an aneurysm or tumor amongst many other horribly painful possibilities
- SUNCT, Paroxysmal hemicrania, and hemicrania continua are in the same family of disorder of Cluster Headache something I’d never known
- Trust in your healthcare provider is crucial because you will respond better in a more trusting relationship
That’s all I have down for Dr. McGeeney I was suffering intense migraines throughout the morning so I was having trouble typing as they spoke so it was hard to live tweet and take notes! In fact if anyone from the conference reads this and took notes on the lectures I’d be overjoyed if someone could email theirs to me or scan your written copy but only if you took comprehensive notes I can go on my twitter pages for all the main points but not for detail.
Ok so as Dr McGeeney was wrapping up for lunch and a live auction I felt a sharp sudden pain in my right eye…but the migraine was already there and as bad as those get so I knew what this one was the beginning of the end of my morning! I quickly left the conference room and went back to our room. I succked the O2 constantly emptying that bag for 25 minutes and emptied an O2 tank that second day. This wasn’t just a cluster this sucker was a KIP 10 and after getting it to dissipate besides the shadows I just felt weak and passed out I don’t even recall how I was put in my bed. All I know is I woke up and felt a a horrible migraine sitting in my neck and extending forward to my right eye. Eventually I found my light sensitivity glasses made by Axon Optics which helps me in cluster and migraine situations and looked at the time I’d slept 9 hours and missed most of the day a lot of talks I still wanted to see.
Luckily a support group led by Dr. Larry Schor was still ongoing and I got to sit in on a good therapeutic session though I’d have liked to be there earlier to take part in more of it! Although I missed his lecture what I saw of the therapy session was great and awesome conversations were had all around. I was disappointed in myself for what I’d consider a failed battle I lost that day to my chronic illness it got the better of me and no matter how painful I always try to fight on I guess 2 clusters at KIP10 were just too much along with the two more I had just the night before.
That about wraps up my summary of Day 2 sorry I missed so much of the information I’d like to share but I just wasn’t there for the presentations. I am going to work at being less hard on myself but I am still annoyed at myself for failing to be there the whole time for presentations. In fact right now I’m battling a low level KIP 4 cluster and a damn migraine which of course has to be 10/10. I just hope I don’t have any attacks on our way home because I only have a 3 LPM O2 machine and I need at the very least 15 LPM I regret not bringing some tanks of our own for the drive I guess I’ll have to stick it out if I get hit on the 14 and ½ hour drive home to New York all the way from Nashville,TN.