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ClusterBusters

dmlonghorn

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Everything posted by dmlonghorn

  1. dmlonghorn

    Just got diagnosed

    Yeah, that's probably a more accurate description of my 'audio-book' experience... tuned them out...
  2. 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.
  3. 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?
  4. 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?
  5. 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
  6. 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.
  7. 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!
  8. Hi Janet - Any news on this effectively aborting any of your attacks?
  9. 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.
  10. dmlonghorn

    Medical Marijuana

    Glad to hear you got some reprieve! Have you tried edibles?
  11. 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?
  12. 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!
  13. 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!
  14. Looks to be a made by Teva Generics, same ones I have. I'm assuming the purpose to open these up is to self-administer variable amounts? Is it possible to ask your doctor to prescribe the vials? If so, Walmart has sumatriptan 5 vials (0.5ml) 6mg/0.5ml for $122 on www.goodrx.com
  15. dmlonghorn

    Just Diagnosed with CH

    Dude. Just got chills, we have a ton of similarities, granted, I haven't skimmed the entire site yet. So this may not be THAT surprising... but dang, eerie for sure! I still plan on writing out my complete story. I will have a formal visit with my neuro specialist on Tuesday to rule out any other potential goodies, but then I can provide a comprehensive history/experience. Keep an eye out! BTW - Stool SOFTENERS, they helped me. PS - I feel like I need to end my posts with a "40mg Prednisone Taper Hypomania" disclaimer, ha. Gotta go - just saw a squirrel!
  16. dmlonghorn

    Seeking Advice - Prednisone induced insomnia

    Hey AJS, Thanks for the advice. Glad to know I'm not alone on that front, because I am EXACTLY as you described on my Prednisone taper. I believe it could be "Drug Induced Hypomania". I exhibit so many of the symptoms and it explains why it took me so long to type out my first posts on the forum. I was all over the place, mentally! Could not maintain a complete thought for the life of me. Had to tell my family that I wasn't right and to tell me when I was being irrational. Crazy stuff. Were you taking all of your daily dosage at one time or throughout the day?
  17. dmlonghorn

    Seeking Advice - Prednisone induced insomnia

    Was a very good visit. Feeling much better about getting a solid treatment plan together.
  18. dmlonghorn

    Sound Triggers - Young Kids

    Hey Folks, Just diagnosed and my first post, so needless to say, I'm still trying to wrap my clustered head around all of this. I plan to post/provide my details and experiences in due time, however, I have one question that I need insight on more than others as involves interactions with my family & young children (ages 3 & 4). As I was just diagnosed (5 days ago), my PCP put me on high-dose steroids, so my cycles have been "curbed" for the time being. With that said, I still can feel the "tinges" like the headache(s) letting me know that they're still there, just waiting for the steroids wear off... Can sound truly trigger an attack or start a cycle? Any insight or experience is appreciated!
  19. dmlonghorn

    Sound Triggers - Young Kids

    Thanks Kris - Certainly some "sound" advice ... I am now a proud owner of several pairs of ear plugs and they help! They take just enough of that high-end tone off of certain sounds. I plan to share my story and help the CH community as much as possible...
  20. dmlonghorn

    Seeking Advice - Prednisone induced insomnia

    My situation gets a little complex when it comes to the BP meds. I also have Rheumatoid Arthritis & Raynaud's Syndrome (diagnosed a month ago, what are the odds?!) The short answer is yes, I'm now on Verapamil. I am seeing a headache specialist later today, as my first Neuro visit ended with me worse-off than when I went in. As this is so new to me, once the dust settles, I plan to share my story in detail in an effort help others and get help when I need it - I think I found the right place Dm
  21. dmlonghorn

    Seeking Advice - Prednisone induced insomnia

    Hello! Thanks for the input! I was prescribed a 20-day regimen, where I stay(ed) at 60mg for 5 days. Today will be my first day at 40mg, so hopefully I can begin to sleep... I know everyone is different, but do you have insight on: at what point, during a high dose taper, will the beast will begin to awaken? Dm
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