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Everything posted by dmlonghorn

  1. dmlonghorn

    Aimovig, new CGRP inhibitor

    That's awesome news!
  2. dmlonghorn

    Some of your questions answered here...

    Quite interesting, thank you
  3. dmlonghorn

    How was your weekend?

    I can empathize. My kids were 3 & 4 when I came into my first cycle (last year). I quickly learned that sound was one of my triggers and with kids just being kids, they can be, well, loud. Tore me up inside to realize the sound of my kiddos playing brought me pain. In certain situations, I would have to quickly cover my ears with my hands to dampen the "sonic invasion." Evidently, I had done this behavior enough times that my 3 year old son picked up on it and would start to cover his ears with his hands, simply wanting to be like his Daddy. Since they're a little older now, my wife and I are going to gradually begin educating them about my clustered situation. Hang in there man!
  4. dmlonghorn

    How was your weekend?

    Very well-said! I'm "counting down" to the same time period and it's good to read reminders like this. Thank you!
  5. dmlonghorn

    2019 Patient Conference

    Hello Everyone, This could be a great opportunity to participate in the clinical trial conducted by the Will Erwin Headache Research Center at the Memorial Hermann Mischer Neuroscience Institute (MNI) in Houston, TX - only a 30 min flight from Dallas. It's a blood draw and a questionnaire, I've done it, it's very simple. If you're considering coming to Dallas for the conference, please consider flying through Houston. More info on the study / foundation can be found here: http://www.cureheadaches.org/our-story PFW!
  6. dmlonghorn

    When's my next cycle?

    I understand there are tons of variables when it comes to starting & stopping of episodic cluster cycles. However, I've only had one cycle (my first) in March (2018), which was aborted relatively quickly with prednisone and I've been on Verapamil ever since. I'm attempting to understand or at least narrow in on when my next cycle will/could start. Are there stats anywhere on episodic CH most common cycle start times? From what I understand the most common is Spring & Fall, but how many suffers (%) only deal with Spring cycles and vice versa with Fall? Does geography play a factor? Again, I get that just when you learn your cycle-pattern, CH will go off script and start whenever it wants - I'm simply looking for either personal experiences regarding the time between your first & second ever cycles or any type of data on the subject, official or unofficial. Thanks!
  7. dmlonghorn

    When's my next cycle?

    Hoping this is random, but I just got hit last night and the September equinox is just a few days away. Crap.
  8. dmlonghorn

    Triggers: Lack of Sleep?

    Hey Everyone, Brief preface: Episodic sufferer diagnosed earlier this year, only had one cycle that was aborted by a Prednisone taper. Haven't had a second cycle yet. I've done some very brief research on on the impact of poor sleep & clusters. In general, there appears to be some sort of correlation, not to be confused with cycling in and out of REM triggering an attack. I'll define "poor sleep" as being tired, laying in bed, wanting to sleep, but simply cannot fall asleep, ultimately getting only 2-3 hours per night for several consecutive nights, which is exactly my situation for the past 3 nights. I've had some bad nights of sleep here and there throughout my life, but this week is an exception. There have been no recent major changes or life events to look back at and say, "Yep - THAT'S why I can't sleep". I would say my stress and anxiety levels are no greater than the many months preceding my inability to sleep. Anecdotally, this may fall under the category of episodic insomnia..? As a result, I'm noticing an increased frequency of low-level headaches or possibly shadows, however, I can't distinguish if the pain is from the cluster realm or just an "I need sleep" headache. The pain is not unilateral, nor am I exhibiting the other telltale signs of a cluster. Anyhow, I've read a lot of your posts regarding lack of sleep or poor sleep quality being a trigger. I'm curious to know that, if you're impacted by this type of trigger: Does it start a single, standalone attack for you or does it start a full on multi-day/week cycle? Have you noticed lack of sleep serve as an indicator of an impending cycle? I don't have much personal cluster-history to pull from, so ANY input or personal experiences on the topic would be appreciated, thanks in advance! PFW All!
  9. Hello! Any news on the conference agenda/topics? Thanks!
  10. dmlonghorn

    Neck muscle tension connection?

    I am experiencing this exact type of pain right now, however, I'm not in cycle and I think it's because it was the way I slept last night.... but it's oddly exactly what you've described.
  11. dmlonghorn

    I'm in!

    I spoke with Dr. Burish with the Will Erwin Headache Research Foundation and will be meeting with him tomorrow to participate in his study. Very excited!
  12. dmlonghorn

    Just got diagnosed

    Yeah, that's probably a more accurate description of my 'audio-book' experience... tuned them out...
  13. dmlonghorn

    Just got diagnosed

    Damn. Yeah, I noticed that when I was listening to an audio book yesterday, for a good 2 hours, I didn't experience one shadow. Edit: I was experiencing shadows before listening to the book and the shadows resumed in mild form, about an hour later.
  14. dmlonghorn

    Just got diagnosed

    If your full-attacks were predictable enough, could you immerse yourself in a game, let's say, 30-60 mins before the attack is supposed to start and see if it reduces the severity?
  15. dmlonghorn

    CH lasting longer than 3 hours- Are they Shadows?

    I've only had full peak attacks on my right side, behind the eye, prior to taking the steroids. I believe I'm experiencing shadows, but they're sort of all over the head, various pings of "reminder pain" but rarely near the original area where my attacks took place, behind the right eye... Does that sound familiar or common?
  16. My local news station just did an article on CH and Gammacore: https://www.click2houston.com/health/new-device-could-provide-help-for-cluster-headaches
  17. dmlonghorn

    Just got diagnosed

    Interesting, thank you! I have My wife has some "Ginger Beer" in the fridge, know if anyone has tried that? Despite the name, it contains no alcohol.
  18. dmlonghorn

    Just got diagnosed

    I too have been curious about "shadows", ironically, I just wrote this update to my family yesterday: "I still feel, what I call, 'tinges' of headache pain that typically coincide with the timing of what would be an attack, so 'The Beast' is letting me know he’s still hanging out, probably pissed off he’s had to sit on the sidelines while the steroids are getting all the attention. Hopefully, he won’t be ready to go full beast-mode on my dome when the steroids wear off." Thanks for connecting the dots Spiny!
  19. Hi Janet - Any news on this effectively aborting any of your attacks?
  20. dmlonghorn

    Having pain downplayed

    A text message I sent to a good friend of mine, someone I could trust: "I need someone to talk to about my CH situation. Someone not a doctor, someone not a family member, just a friend. Unfortunately, I'm struggling mentally with this and just need to talk to someone that knows me at the friend level. Don't worry, I'm not going to break down and dole out a sob story. I don't want sympathy or pity, just a conversation." Just sending that message felt like a ton of bricks being lifted from my shoulders. Then the conversation also went really well, another ton lifted from my shoulders. From there, my buddy knew the facts, he knew what rumors could be dispelled and had accurate information to give out. Over the past week, amongst our mutual friends, he has been casually bringing it up, talking about how serious it is, sort of like a personal grass roots movement. My friends get it, they understand now, thanks to him. Best of luck to you.
  21. dmlonghorn

    Medical Marijuana

    Glad to hear you got some reprieve! Have you tried edibles?
  22. I'm on a 60mg prednisone taper that has induced full-blown insomnia, not to mention the other side effects of irritability and agitation. Prescription sleeping meds aren't working. I understand this is temporary (at least i hope so), but I have upcoming visits with CH specialists and I'm having trouble thinking clearly, maintaining a clear train of thought during conversations. Anyone have tips or tricks on overcoming prednisone induced insomnia?
  23. dmlonghorn

    Seeking Advice - Prednisone induced insomnia

    I was taking all 60-50mg dosages in the A.M. and while the first two days were badass, then the insomnia kicked in and it was all down hill from there. However, on my second 40mg day, I started to disperse them throughout the day and I no longer experienced the hitting the massive "fatigue walls" as I called them. Good luck!
  24. dmlonghorn

    I'm in!

    He's awesome! A very cool, down to earth guy. I'm still super sensitive to sound, so he ensured the nurse taking the blood was aware of my sensitivity. Which, I must add, she was amazing. Whispered to me the entire time, ha! While I was giving blood, Dr. Burish went into the waiting room and asked my Dad if he wanted anything to eat or drink and they chatted until the blood work was completed. Then it was just a simple Q&A / interview session. The greatest part is that he genuinely cares and is focused on what I find most fascinating about CH, the circadian aspects. Yes - He's here in Houston, only a couple hours away. Please participate, let's be pioneers!