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dmlonghorn

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Posts posted by dmlonghorn

  1. Just now, FunTimes said:

    I was looking for the same type thing but just like everything else cluster related. It almost, kind of or is close to but does not work 100%

    Yeah - I've already started to create my own crude tracking system using IFTTT + Google Spreadsheets.

  2. A brief update here: The Research Center touched base with me for the first time since I initially took part in the study. They asked to speak with my parents about behaviors I exhibited as a child.

    I found that interesting.

    Edit: Yes, my Mother obliged and is now actually going to take part in the study as well.  She's suffered from headache disorders for quite a while as well.

     

  3. 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

  4. 20 hours ago, CHChris said:

    I have also been able to knock them back with O2.  Of course, the beast is persistent, but the oxygen and energy drinks work for shadows too, before the main event starts.

     

    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. B) Thank you.

    And Thanks all for your feedback. Now when I hear hoofs, I'll think O2.

    • Haha 1
  5. 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.

  6. 7 hours ago, Dandownunder said:

    My poor two year old son had to see me pacing around the house trying to keep it together for him as I was looking after him, sometimes I really feel like my family deserves better and my work for that matter. After its all over i often take a deep breath and think will this hell ever stop. 

    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!

  7. 11 hours ago, Siegfried said:

    And as things usually get worse after 21 March, I fear a bit for the reminder of the year but no matter, things are what they are and we need to try to make the best of it every day again, no matter how bad it gets :)

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

  8. 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!

    • Like 1
  9. On 8/6/2018 at 2:40 PM, spiny said:

    Personally, I have had all but one cycle start in September and run till March - Spring to Fall Equinox. Then this year, I had a cycle start in late June. So, there ya go! This after decadees too.

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

    Crap.

  10. 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!

  11. 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!

     

  12. On 12/26/2017 at 7:14 PM, Beastslayer said:

    It's not easy to explain as I don't know anything about the relevant muscles or bones, but this is on the back of my neck, close to the spine. On the right (normal) side, the muscle is soft enough that if I push enough, (I think) I can feel down to the vertebrae, and feel a small amount of corresponding pain there. But on the left I can only push against the muscle, never feeling anything resembling bone, and never eliciting any pain.

     

    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.

  13. 1 minute ago, Bilal said:

    Well, in my case it's not that I didn't experience the shadow or didn't notice it was there. I was able to "tune it out" because the excitement I was getting from the game was more than the misery I was getting from the pain, if that makes sense.

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

    • Like 1
  14. 4 minutes ago, Bilal said:

    Unfortunately not, because the very first time I had a Ch attack ( 2 months ago) and a few ones after that, I was playing video games before the attack started and I noticed the buildup of pain. Eventually it came to a point where I had to put my controller down and hold my head. If anything, concentrating on the game during the attack probably made it more painful because my most painful attacks happened when i was sitting in front of a screen (either doing my homework or playing video games). Gaming only helps you ignore shadows I guess.

    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.

  15. 1 hour ago, Bilal said:

    but I can play video games and I stop feeling them after I get immersed in the game.

    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?

  16. 9 minutes ago, spiny said:

    Hi coolestnurse and welcome!

    Most people report 'shadows' as sort of -Here comes a hit. No. Actually. it never reached that level. They are described differently by different people. Rather like a low level hit. For me, it feels like the beginning of a hit that never materialized. Not a low level CH with the runny eye and all, just the beginning pains of a hit. It sounds like you have a very mixed bag of headaches!

    I find caffeine (energy drinks, coffee, etc) helps and so does ginger candy. Shadows can last all day sometimes. My pain can oscillate up and down depending on what I am doing. Lean over and pain goes up. That sort of thing. 

    Of course this is my experience.

    What are you taking for your CH?

    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?

    • Like 1
  17. 33 minutes ago, CHfather said:

    For shadows, try ginger.  If you can get some raw ginger, slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it.  You can add honey, sugar, etc.  Crystallized ginger and real (strong) ginger candy are also good (for shadows, anyway).  Candy from Ginger People is strong.  Make your own crystallized ginger candy: http://www.foodnetwork.com/recipes/alton-brown/candied-ginger-recipe-1944906  Someone once posted "Ginger and honey on toast. Yum!"

    Energy shots (5-Hour Energy, for example) are also sometimes good for shadows.

    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.

    • Like 1
  18. 3 hours ago, spiny said:

    Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

     

    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! :)

    • Like 2
  19. On ‎10‎/‎25‎/‎2017 at 10:43 AM, Janet Hughes said:

    I am due to get my free two month trial on Friday: 2 - 31 day supply or 2- 300 doses, whichever comes first.  Insurance probably won't cover anything after that.  Cost to purchase, with Discount is 498.00  for 31 days or 300 doses.  I will see how it goes, and keep you all posted!

    Hi Janet - Any news on this effectively aborting any of your attacks?

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