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ClusterBusters

dmlonghorn

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Everything posted by dmlonghorn

  1. 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!
  2. dmlonghorn

    Oxygen concentrators?

    My setup is an M tank, with a non-rebreather mask and a 15 LPM regulator. I'm currently experiencing foggy shadows that are becoming more "dense" (uncomfortable) as the days go on. I use the hyperventilative method anywhere between 5-10 mins. The fog will clear, but for only maybe 15 mins before it settles back in. Has anyone used a concentrator+canula in addition to their regular O2 to help supplement or prolong the benefits achieved after hitting the regular O2? Now these are shadows I'm trying to address, not sure if all of the O2 aborting protocols apply to shadows as well as attacks. Thanks, DM
  3. dmlonghorn

    Fog = Shadows?

    I’ve been having some low level headaches, nothing really crazy or even that painful, but there’s this lingering “fog” that is more bothersome than anything and concentration has been a bit challenging. I have no issues with my high-level headache indicators, sleep, hydration and hunger – all A-OK. I haven’t consumed caffeine or energy drinks to specifically address CH before, so I figured I’d see if it would affect the fog. So I grabbed a bottle of cold brew coffee, took several large gulps and after about 10 mins, success! The fog cleared up. I’m about a month away from my 1 year CH anniversary and of course my fearful/over-analytical mind wants to attribute these latest developments to something other than CH, but my gut is telling me the beast is stirring and the fog = shadows...? Always go with your gut. Well, I don’t want to.
  4. dmlonghorn

    Fog = Shadows?

    I always thought the O2 was supposed to be used for the bad attacks, but sure enough, cleared up the fog like a warm sunrise. Thank you. And Thanks all for your feedback. Now when I hear hoofs, I'll think O2.
  5. dmlonghorn

    Aimovig, new CGRP inhibitor

    That's awesome news!
  6. dmlonghorn

    Some of your questions answered here...

    Quite interesting, thank you
  7. 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!
  8. 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!
  9. 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!
  10. 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!
  11. 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.
  12. 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!
  13. Hello! Any news on the conference agenda/topics? Thanks!
  14. 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.
  15. dmlonghorn

    Just got diagnosed

    Yeah, that's probably a more accurate description of my 'audio-book' experience... tuned them out...
  16. 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.
  17. 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?
  18. 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?
  19. 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
  20. 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.
  21. 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!
  22. Hi Janet - Any news on this effectively aborting any of your attacks?
  23. 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.
  24. dmlonghorn

    Medical Marijuana

    Glad to hear you got some reprieve! Have you tried edibles?
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