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ClusterBusters

dmlonghorn

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Posts posted by dmlonghorn


  1. 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!


  2. 6 hours ago, Freud said:

    I’ve never been told an exact MOA of verapamil on CH, I was under the impression it’s like oxygen. They really don’t know why it helps. Where did you get that info from? 

    Well so what your saying is if the verapamil initially increases your threshold, stopping it or if it became less effective your threshold would lower back to baseline not decrease your threshold per se. imho you’d end up back where you started not worse off?

    Hey Freud,

    Yeah, I'm not sure of the MOA either, but it's how my neurologist described the relationship between Verapamil + CH before I began my 3-week taper.

    You're right, it would bring you back down to your baseline level, not make CH worse.


  3. 2 hours ago, Dana129 said:

    Something that bothers me, is it possible that Emgality could gradually worsen headaches overtime like verapimil?

    Verapamil increases one's "trigger-threshold".

    Overtime, if Verapamil were no longer effective, then your trigger-threshold would be reduced.


  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.


  8. On 6/17/2019 at 7:16 AM, Siegfried said:

    the pressure on my chest, the nausea and the pain in my stomach and bowels seem like I have a highest degree flue... I can barley breath. 

    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.

     

    20190705_124051.jpg


  9. 2 hours ago, Freud said:

    I was waiting for you to see this. How’s things going these days. Have you busted your CH?  I think you were attempting some months ago. 

    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 :) 


  10. 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.


  11. 1 hour ago, VocTeacher said:

    has anyone ever heard of a pinched nerve in C 6-7 and C8 causing CH

    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.


  12. 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.


  13. 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. :)

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