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dmlonghorn

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Posts posted by dmlonghorn

    Stopping verapamil

    in General Board

    Posted

    For what it's worth... I came off of it a few years ago after fully committing to M as my treatment method.

    I did a long taper.

    Feels good to not be on it, I wouldn't put the idea to bed entirely. 

    Be well :)

    • Like 4

    Tremor

    in General Board

    Posted

    Yes, I have essential tremors. It's mild, affecting my right hand when I try to do things requiring dexterity. They don't happen when I'm at rest.

    Caffeine is an amplifier for mine.

    Same for my mom also has CH and tremors. Hers are worse than mine though. They got worse with age.

    Neither of us take meds for them.

    • Like 3

    Help coping.

    in General Board

    Posted

    You could try running. I have aborted attacks this way.

    You have to start running as soon as you feel it coming on. Then you'll need to run to a point where you're essentially maxed out and you're having to take really heavy breaths.

    If you don't run long enough, the attack can pick right back up so be careful.

    I've also heard of people doing push-ups to abort. Same principal, get your HR up and take in as much O2 as you can.

    Good luck

    • Like 1

    Role of structure of the nose in cluster headache

    in General Board

    Posted

    On 10/2/2021 at 8:09 AM, Tony Only said:

    Now I am wondering could everyone with some kind of nasal structural issue benefit of the use of Neti pot ?

    Do you have any ideas or experience ?

    Hey Tony, I'm 8 days post-op from balloon sinuplasty, turbinate reduction & deviated septum surgery.

    I would consistently have one side of my nose clog and impede getting normal full breath, mostly at night and it would occasionally shift to the other side.

    While I'm still recovering, I'm already experiencing improved breathing with much less effort. Full, satiated breaths from my nose that top off my lungs each time, it's really liberating.. makes me think I should have had this done long ago.

    I did not have this procedure to treat clusters, however..... I have not had any cluster activity since the procedure, zero.

    I'm chronic and experience shadows and spikes on a daily basis, but oddly nothing since. 

    I'm cherishing this time as I approach my max # of days I can go without dosing ~21. 

    I'm pretty certain the beast is simply regaining it's composure before resuming our "relationship"

    My pre-op answers to the survey would be:

    1a

    2b

    3c

    • Like 2
    • Thanks 1

    Various Questions About Spikes/Picks to the Brain ETC..

    in General Board

    Posted

    Yes! My journal is littered with "spike" and then I rate the pain level of each spike. I get them pretty much daily, 80% of them are level 7 and they're always on my cluster side (right). I do get spikes on my left side, but I can now firmly attribute those to barometric weather changes - they mimic the ch spikes but they're not as sharp.

    There's not much I do to treat them as they come and go so quickly. The constant mind-fuckery is almost worse than the pain with these things. If I get a spike followed by pressure, that's when I know shits about to go down and I'll ready the O2.

    I'm training for endurance competitions, so I run a lot - I suspect it helps to some degree, but I believe it's a combination of dosing and the D3 regimen that prevents these spikes from becoming screamers.

    • Like 1

    Diet and Clusters

    in Research & Scientific News

    Posted

    On 1/7/2020 at 7:44 PM, MaxHead said:

    At least for me, CH is definitively not nutrition-related.

    Kudos on the lifestyle change!

    In 2018 I ditched alcohol, gluten, dairy and meat. I'm living in the best physical condition of my life and the Beast is still there, always there.

    • Like 1
    • Thanks 1

    Sleep and Cluster

    in General Board

    Posted

    Last week I experienced what I can only describe as sleep paralysis. I was also getting hit with cluster pain during the paralysis. Fortunately the pain was only around a 5-6, but all I could do was let out a low moan. It was terrifying.

    My mother, who's also a clusterhead, has had similar experiences. She recently had a sleep study done (without EEG) which resulted in a sleep apnea diagnosis.

    I'll be signing up for a sleep study soon.

    Ping pong

    in General Board

    Posted

    Hey Tony - I always get mine on the right side, however, just the other day I felt it trying to punch through the left. The sensation was foreign but familiar at the same time.

    Fortunately, it didn't fully manifest and it went back to doing what it does to my right side. It was like the beast was exploring its options.

    I chalked it up to the MM doing its thing.

    Hang in there man. PFW.

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