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ClusterBusters

dmlonghorn

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Posts posted by dmlonghorn


  1. Hey Elrik,

    My neurologist refers to us as "Tic-Tacs"...

    I'm familiar with what you've described.

    Episodic CH diagnosed in March 2018 and my TN was confirmed earlier this year, experienced both TN1 and TN2... 

    Fortunately my TN flare ups are infrequent and my CH is under control with treatments found here on the forum.

    Feel free to shoot me a private message, I'll be happy to help where I can.

     


  2. @jon019 agreed!

    Start with your family and communicate... And then communicate some more. In my home, our own form of sign language is evolving. It helps when I'm about to get hit, getting hit, etc. Things like thumbs up, down, hat on backward, sunglasses on inside.

    I downplayed the hell outta CH at work, things only got worse at work.

    Try to get a mini plan at home that works and implement variants of the plan throughout other portions of your day to day life.

    Shame on CH, not you. Ya hippie! :D


  3. 2 hours ago, andy63thisyear said:

    Relief via vigorous exercise for 15 minutes?

    Hey Andy,

    You're not alone here. I experience relief when I go running, but if I don't run long enough, it will continue build... 30 minutes is generally my sweet spot.

    If you have an oxygen tank, you can inhale enough oxygen to abort the attack within minutes and you won't even have to turn on the treadmill.

    Pain Free Wishes!


  4. You've come to the right place. We're all "like-minded" :D individuals.

    It can seem like learning another language, but with enough research you'll begin to speak it (after 15 years :( you have a good start)

    The best place to start on site is the "new user read here first" link at the top.

    Good luck keeping up the fight.

    -dm


  5. @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.


  6. 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.

     


  7. @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.

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