dmlonghorn
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Posts
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Posts posted by dmlonghorn
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I feel ya Mox. Similar shit going down in my world right now. Hang in there.
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It was great, would be cool to do more.
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@Luis Sorry to hear that. It seems we're in the same boat, mine are ramping up as well.
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2 hours ago, FunTimes said:
15 LPM wasn't cutting it for me so I bought this regulator, very much recommended.
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H-Town!
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Hi Luis,
What dosage of Emgality did you start out at?
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I am in a cycle and came down with a upper respiratory/sinus infection. When this happens my CH activity gets worse so I chose to do a Prednisone taper, in addition to increasing my D3 intake.
While I hoped it would also end this cycle, it did not.
This taper was only 5 days. My previous experience with an effective Prednisone taper started at 60mg over 5 weeks.
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Forward this post to 10 of your friends or the "cure" will disappear forever.
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Freud!!! It's good to see you back in the mix
!
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Hey Spike,
Come on in, have a look around.
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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.
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Hey BoF, As funny as that would have been, I didn't see any.
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I tried and failed with white wine at the conference Friday night. I got hit and learned that my low level constant shadows are an indicator of still being in a cycle.
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My tinnitus is pretty good indicator for me. When the ringing in my ears is really ramped up, I know I'm in the "danger zone". I also noticed that my heart rate will jump up before a series of attacks start.
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Dude! Scoreboard!!
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@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!
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I found this article interesting, I hope you do too.
https://www.iflscience.com/brain/magic-mushroom-chemical-hyper-connects-brain/
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I've been experimenting with this for the past week. Body weight exercises, running, walking, etc. For me, CH does not discriminate against physical activity. But on the flip side, physical activity helps prevent complete CH attack manifestation.
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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!
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You've come to the right place. We're all "like-minded"
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
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18 hours ago, Batch said:
How much vitamin D3 have you been taking as a maintenance dose?
10,500 IU / day
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12 hours ago, Freud said:
We will have to talk about this in Dallas!
Indeed!
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2 minutes ago, Brain on fire said:
Interesting... What did your doc say?
@Batch hasn't responded yet, lol - j/k. I just passed this info onto my neuro, awaiting to hear his thoughts.
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@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.
cluster headaches and exercise
in Research & Scientific News
Posted
@Tomas I've experienced something similar when running to abort attacks. If I stop running too soon, the attack will build and sometimes really fast. But if I run a full ~20-30 mins, it will pass.
This works best when I first feel the attack creeping in, it turns into "get up and go!"... I can't always bolt out the door, but it's good to have this "tool" available in certain situations.
Good luck