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ClusterBusters

dmlonghorn

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dmlonghorn last won the day on February 14

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About dmlonghorn

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  1. dmlonghorn

    Teetering on the Edge with Verapamil

    I think my beast is still young and not yet as fickle as most. I will cherish these days benefiting from verapamil while they last.
  2. dmlonghorn

    Teetering on the Edge with Verapamil

    To clarify, I'm attributing all of the issues I listed above, to the beast, not the Verapamil. So I theorize that, in my current state, if I were to stop or ween myself off the Verapamil, then the beast would have free reign and things would get a lot worse.
  3. Going on 2 months, I'm experiencing the following: Random spikes of level 5-7 pain throughout the day (not every day) that last from 3-7 seconds. I call them "look-away's" because they cause me to involuntarily close my eyes, squint my face real tight, turn my head down and "look away". Feel OK in the morning, but a fog builds in my head throughout the day to a point where I feel like I've ran out of gas I've had one night where I woke up to a couple of level 5's, 3 hours apart, which were aborted with O2 Sound sensitivity more so at the end of the day Irritability Poor sleep ...and so on... I conclude that: My current Verapamil dosage (120mg x3 / day) is maintaining a loose barrier from letting the beast in and that's all it's going to do until the cycle ends naturally or by other means. I realize that the Verap dosages can go pretty darn high from one person to the next, that's not an option for me. I'm also actively exploring other treatment options and will post about those later, but I'm curious if anyone has walked down this road with Verapamil. Would you come to the same conclusion I have?
  4. dmlonghorn

    Successful reduction of headaches with diet update

    No real cheat days to speak of. I did the diet modification to impact my Rheumatoid Arthritis, which it did, I no longer require medication (plaquenil / methotrexate). I'm thankfully only getting two cycles / year, so I don't have a large CH dietary pool of data to pull from. It sounds like you could really nail down your triggers with a Whole 30-type approach to your diet, slowly adding items back in, evaluating their impact - if you were so inclined. For me (and the family), it's no longer a "diet" - it's simply how we live/eat and we couldn't feel better! Although, I fear we're a couple Netflix documentaries away from becoming vegan, ha! I'd be interested to see how your trial and error evolves, please keep us posted.
  5. dmlonghorn

    Successful reduction of headaches with diet update

    I've been on a strict Paleo diet for the last 7 months (which it sounds similar to what you did) and it has worked wonders for everything but clusters. My Spring episode just started, womp woommmp!
  6. dmlonghorn

    Electronic Aspirin

    https://ourcryptojournal.com/electronic-aspirin-market/170210/
  7. I'll be hitting the road next week for spring break with the family. Staying 2 nights in a hotel a couple hundred miles from home. I have an M60 oxygen tank. Are there any best practices to follow when it comes to driving with an O2 cylinder in a personal vehicle? If it's relevant, we'll be in a large SUV. Safety is my primary concern. Thanks!
  8. https://www.specialtypharmacytimes.com/news/galcanezumab-receives-fda-priority-review-for-episodic-cluster-headache
  9. dmlonghorn

    Gamacore

    Glad it found a good home!
  10. dmlonghorn

    2019 Patient Conference

    Registration complete!! Hope to see y'all there!
  11. dmlonghorn

    Hello - First timer

    I'm starting to pick up on this pattern as well. I'm typically feeling good in the morning, start working and maintain focus but as the day goes on, I can feel the fog building and by the end of a work day, the foggy shadows are much more dense and will be with me for the remainder of the evening.
  12. dmlonghorn

    Pre Episode symptoms: do you have them?

    Yup! The wife asked me how I was doing yesterday, this was my exact reply.
  13. dmlonghorn

    Pre Episode symptoms: do you have them?

    I'm on Verapamil which keeps the beast "managed", but the "pre-symptoms" you've described are persistent. It's such a weird feeling, going from perfectly fine to riding the peaks & valleys of depression and irritability. I'm coming up on my 1 year CH anniversary (episodic Mar/Sept), so I'm still learning, but I'm on board with what Dan describes. I'm open to suggestions, but there's not much I do to deal with them, other than make sure my wife knows what I'm experiencing. I think just talking about these things with your significant other can make those peaks and valleys less daunting. Best of luck to both of you.
  14. dmlonghorn

    Tinnitus

    I'm having a lot of tinnitus with this latest cycle. I should add that sound is a trigger for me. Taking this a little further, not just single sounds which can trigger an attack (think ambulance siren or a very high pitched tone), but it's more so with multiple, simultaneous sounds, like being in a scenario with several conversations going on, kids playing, TV on, dog barking outside. My guess is that it's sensory overload, which brings in my friend "anxiety" and so on and so forth.
  15. dmlonghorn

    Congress is Useless - Paid Political Hacks

    5:18PM and 10:18 PM Me too...
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