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Everything posted by dmlonghorn

  1. https://www.biospace.com/article/teva-scraps-chronic-cluster-headache-study/
  2. dmlonghorn

    My latest Vitamin D Results

    In Feb of this year, my vitamin D levels were at 74.6 ng/mL. I started @Batch's D3 regimen roughly two months ago. I just had my D3 levels checked earlier this week and I'm now down to 70.0 ng/mL... craziness!
  3. dmlonghorn

    My latest Vitamin D Results

    10,500 IU / day
  4. dmlonghorn

    This helped me- hopefully will help others

  5. dmlonghorn

    My latest Vitamin D Results

    @Batch hasn't responded yet, lol - j/k. I just passed this info onto my neuro, awaiting to hear his thoughts.
  6. dmlonghorn

    My latest Vitamin D Results

    @Freud I read about what I think @Batch referred to as the cascading effect or something like that, so I started introducing benadryl to my routine. I ended up taking 25mg every 4 hours and before bed I took 50mg. I did that for about 2 weeks until $hit started to hit the fan and I simply started forgetting to take them. The infection piece crossed my mind but there are no current indicators and my kiddos are typically the first sign of an infection that's about to wreak havoc on the home, but they're fine. I'll keep my feelers out there. As additional info, I checked my D3 results back from August 2018, they were 47.9 ng/mL, so progress is being made for sure.
  7. dmlonghorn

    This helped me- hopefully will help others

    I've been on a paleo "diet" for almost a year. I did this to combat the "early stages" of Rhuematoid Arthritis (RA). I just visited my rheumatologist who confirmed my blood no longer has enough inflammation in my body to show up as being positive RA. My first thought was "Eff you a$$hole, why didn't YOU suggest changing my diet?" Thanks to my wife's diligence, we took control of my care. This quack outlined a treatment plan that included a lifetime of methotrexate. Excuse the rant, I still have clusters.
  8. oh man, that would mean I had the chance to be referred to as "Mister Awesome" in public... so many regrets!
  9. dmlonghorn

    Simple Technique to Abort Headaches Right at Onset!

    @manishkpratap Is it possible to edit the title of this thread, maybe not to come across as misleading? If not maybe the moderators can. Now for the real reason I came to post here. If I understand you correctly, I think I experienced something similar.. sort of... and without the armpit thing, which I'll try, it costs nothing but time and thanks to CH, I have that. I was on verapamil at the time, so I was spared what I called "true attacks" but experienced A LOT of the other general crap that comes with CH, randomly clogged sinuses and I was VERY sensitive to high-pitched sounds. So sensitive I would have to wear ear plugs around the house. When it got real bad I would lay on the bed with ear plugs in and further, wrap a pillow around the back of my head onto each side, ensuring each ear was covered. I had done some research on the anatomy of our sinus cavities and my rough takeaway was that those cavities or sinus "pockets", particularly the pockets above/behind our eyes, can link together, allowing for any mucus to flow from one pocket to the next. People that have sinus problems, like a deviated septum, might have issues with the mucus flowing from one cavity to the other. So as I laid there for up to an hour, my breathing would slow and I could hear my heart beat and then I could eventually hear and feel the sinus mucus activity. I thought to myself "I wonder if I lay on my side, I'll be able to actually hear the movement from one pocket to the next." Then the experiment began. I purposefully laid on my side to listen to the impact gravity would impart on the mucus inside my head as it traveled from one end to the other..... the things clusterheads do, lol.... After about 5 mins I felt and heard it move ever so slowly to in between my eyes and eventually fully into the cavity on the other side of my head. The most interesting part was as it traveled across the space that would be directly in between my eyes or behind my nose, I felt this "pop" and release of pressure, like popping a really small bubble behind my nose. I found it interesting so I flipped back over and sure enough, another couple "pops" and more pressure release... mind you, I was actually hearing these "pops" too, not just feeling them and to me they were loud. I did that process until there were no more "pops"... and that's really all I got because at the time, I didn't think I was in a cycle due to the verapamil, so I didn't pay it much mind and forgot about it... In my latest cycle the onset of pain has been erratic and fast, but I'll certainly give this a try again and report back. Take care.
  10. Awesome! I'm bringing my wife and parents. Looking forward to my first conference, never met another CH'er in person.
  11. dmlonghorn

    With my two feet back in clusterland

    I honestly don't know anymore, so much goes on up there...
  12. dmlonghorn

    With my two feet back in clusterland

    This! This is exactly what I've been experiencing as I've been tapering off of Verapamil. Stomach all knotted up, felt like I most certainly needed to visit the toilet to purge from somewhere, nope. Chest real heavy, get the sensation like I'm running out of breath. I check my Fitbit heart rate monitor and it's at 70-110 bpm while at rest. The sensation continues to build into an attack. It happens every time preceding an attack now My normal resting heart rate is 55bpm.
  13. dmlonghorn

    Do you think trigeminal neuralgia is worse the CH?

    Hey Freud - No dice on the bust. Neuro had me taper off of verapamil (slowly) and sure enough, after the 4th day, the symptoms started rising back to the surface. Verapamil, for now, is my saving grace. I'm attempting another bust soon, going to tweak some things, take notes and then it's onto the next chapter I suppose
  14. dmlonghorn

    Do you think trigeminal neuralgia is worse the CH?

    I have both. A level 10 cluster headache resides in a pain category all by itself. My Neurologist asked me to rate my TN pain, I said "about an 8", he had this puzzled look because he's used to hearing TN pain categorized as a 10. The real hell is when they co-occur. Here are my Marvel Universe pain comparisons: Cluster Headaches - Thanos squeezing my head Trigeminal Neuralgia - Thor's Hammer striking my face Ice Pick Headaches - Black Panther's nails tapping on my head Each one is powerful, but different.
  15. dmlonghorn

    Any input

    I have a pinched nerve at the C7, when I straighten out my right arm, my middle finger gets zapped. The pain began to manifest right around the time my 2nd cycle started. No clue if it caused the CH, but there's no doubt we have a couple things in common.
  16. dmlonghorn

    Prednisone Withdrawal?

    I was on a 60mg prednisone taper. The taper rate at that dosage lasted nearly a month (60mg 4 days, 50-4 days, 40-4 days, 30-4 days, 20-4 days, and so on) so I would agree with CHTraveler, your tapering schedule seems abrupt.
  17. dmlonghorn

    Dreams and clusters

    I've never been one to dream or at least remember them (pre or post clusters). I'd have friends that would talk about their dreams from the night before, on a daily basis... always thought it was odd that I was never able recall my dreams where others could seemingly recall them at will.
  18. 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.
  19. 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!
  20. dmlonghorn

    Electronic Aspirin

  21. 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!
  22. https://www.specialtypharmacytimes.com/news/galcanezumab-receives-fda-priority-review-for-episodic-cluster-headache
  23. dmlonghorn


    Glad it found a good home!
  24. dmlonghorn

    2019 Patient Conference

    Registration complete!! Hope to see y'all there!
  25. 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.