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devonrex

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Posts posted by devonrex

  1. The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.

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  2. I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot. 

  3. I have not had a drink in 6+ years any alcohol is a 100% trigger and will jack a hit up if I have any during. Never had a chance to try one off cycle, since chronic I have no down time. If I do get a break I likely will not chance it. 

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  4. Team caffeine as well, I am on team chronic and go through so many monster 'zeroes' sugar free so not guzzling calories, taurine can act as an anti-inflammatory so I think that is why it helps in conjunction with caffeine. Caffeine has never been a trigger, strong smells (chlorine, bleach, pinesol etc) Alcohol, the rest just after exertion, fluorescent lights can trigger but tend to just ramp it a bit. O2, opioids (does not kill it but rounds off the sharp edges, even a 9 to an 8.5 is a huge jump for these.) been getting high dose lidocaine injections (nerve blocks) all around my eye, bridge of nose, forehead, cheekbone, temple once a week for the last couple months and they also seem to lower the overall pain, but no abort from it. (4% lidocaine in large doses, looks like I have been stung by bees). Everyone here is helpful and so much advise and simply support here.

     

    Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join.

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  5. For the longest time, I used to get pain/tension right at the base of my skull on the right side and within minutes the beast smacked me upside the head. Been a few years since that has happened, but that kinda stopped when they went insane on me after stopping a drug the name I forgot but anecdotally has seemed to jack up a lot of people after stopping it. Likely it is because the low grade pain and ache from the shadows have overridden it for me, but you can use it as a signal to get your ass on the o2 and maybe hit before it even starts.

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  6. Mine started off with a couple a week, but long, 2.5 hours from the start and still are. Since I got no breaks even in the couple a week, they were chronic from the start, just low end of the spectrum. I had been t-boned and trashed my neck the weeks preceding the ch, so I have felt that may have been the 'trigger' but who knows. A butterfly farting in Argentina could have been the cause. They do sound like them. As was asked do they ebb and flow or ramp up to the level they stay at until they 'drain away' at the 10/20 minute mark? That is usually one of the main things they ramp, stay at that peak until they drop off again. 

     

    Cold turkey caffeine stoppage can cause withdrawal headaches as well. That may be a precipitating factor as well.

  7. Sounds a bit like my experience, scrambled them for a month, including less hits and lighter ones, the next month was a random schedule but lessened, the three and fourth month they began getting steadier and came back fully by the end of the 4th month, mind you I had some home dhe injections for a few weeks after.

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  8. Ok, zapping and killing nerves, is this not just a gamma knife with a different name or nerve transection with a different name? both of which have shown to help in the short term but remissions are high.

    Which both also have a pretty high likelihood of facial paralysis (permanent) with extreme facial droop among other side effect possible. 

    Also, the three branches of the trigeminal nerve, two are sensory only so have no interaction with tendons or musculature, providing sensory response to the orbital of the eye and above and mid cheek/face. only the mandibular has any motor function and that is to the jaw, one of the places that gets hit less than those two above. So growing into a tendon seems a bit out there as a diagnosis as well.

  9. Glad you found us, sorry you had to find us. I have read that yes, we do get ptsd from these things. How can you go through some of if not the worst pain a human can experience and not be full of those feeling of dread, of panic of fear over the next. I have had many instances of this over the years being chronic. Like I am going to lose my mind. So many here are so knowledgeable and can steer you right. This really is an amazing place for those in the trenches and those helping those in the trenches.

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  10. Had that, occipital block, all around the occipital bone my one neuro did it in like 8 places all around it, it cause a massive hit as during the injections could feel the pain hit those nerves and shoot right into the side of my head, was numb back there a while but did not seem to blunt anything.

  11. So, neuro is using me as a bit of a guinea pig, 2 weeks ago gave me about 6 4% lidocaine injections around my eye, yesterday it was 8+ with some extra at the tmj along the cheekbone, top of temple, all along the eyebrow and under the eye. It seems to deaden the pain in those areas of an attack but not prevent it totally, so it helps to a degree, still get pain deep under my eye, top of forehead and back of temple by the top of my ear but not much anywhere else. So it is something to maybe keep an eye on or give a try.

     

    Anyone else had similar areas nerve blocked?

  12. I have peppermint oil and a couple other 'pain relief' mixes with peppermint and cleary sage etc, it does nothing for the pain per se, but the scent and the warming feeling helps me tolerate attacks better.

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  13. Something to look into, if you can get a DR to prescribe an 'odd' dosing that autoinjectors and such do not normally come in, you can sometimes find a pharmacy to compound it for far cheaper than the premade vials and dosing. But at least here in Canada, it has to be a dosage that is not normally available premade, it is a bit of a loophole. Since you will have to prep the injection yourself, you can still use a 'normal' dosage.

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  14. Since this is back up, I have found strenuous activity does not trigger one per se for me, it is once it is finished and I am cooling down/recovering that it triggers, it might be the same kinda thing that once we relax for sleep etc it can be a trigger. Worst is after a certain strenuous activity with the 'end' of it it 99% triggers a hellish one, so thats fun.

  15. I always find at about 3-4am, alone, dark, quiet rocking and biting my tongue to try and not wake anyone, to be the loneliest hour. Without the dark/black/gallows humor might not have made it this far. I have help from family and while the is freaking amazing, the depth of the pain is really isolating because it is basically unimaginable to anyone who has not experienced it. 

    I tend to try and blast music or force myself to play something, if it allows me, to try and split my focus. Adhd is kinda a blessing in those cases if I can manage to grab my hyperfocus with something, it can in essence put me in a fugue state and helps to ride out the hellstorm.

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  16. Was thinking more of the Chat and Chill on stocking island in the Bahamas, think Jimmy Buffet used to frequent it. They make the best coleslaw I have ever had, a mean conch salad and a to die for conch fritter burger. Either way, on a serious note, thinking of making another trip one day to see if it really does help the head. 

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  17. Being near the mountains in Calgary Alberta, we get some extreme weather and barometric changes and I find my heads follow those. So I am going to vote pressure change. I have found going from hot to cold and cold to hot environments can trigger or increase a head as well. Like AC to outside or winter coming inside or going from warm inside to 30 below outside in the winter.

     

    I did find, when I vacationed in the Bahamas, that my heads kinda leveled out and dropped some in intensity as the weather is pretty consistent along with sea level pressure. Now, I just need my healthcare to prescribe and pay for the bahamas....

     

     

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  18. On 5/20/2023 at 1:09 PM, spiny said:

    Devonrex, Yes, I hear it there. In the beginning. 

    Time is bad for that frequency. The guitar hits it a lot! Vibrates in my head in a bad way!

    Most of 'the wall' has that same key through a lot of it, only noticed because this was mentioned. Also the album in the post had me thinking of floyd right off the bat, specifically the wall with the interspersed conversations and phone calls that show up in parts of the wall. I do feel it captures some of the nerve jangling 'waiting' feeling and the dread, listened to the clusterhead full album a couple times now and it does really evoke a lot of the same feelings I get. So, very well done.

  19. On 5/17/2023 at 3:02 AM, spiny said:

    Thanks David! It is nice to finally know what notes can pierce my brain like that!! 

    Apology not needed. I have always found it odd that the one frequency is so horrible and wondered about the how and why of it. Now it has a name and that is progress! :)Pink Floyd uses it in some of their recordings too and I have to skip over those! So, you are in great company! 

    Goodbye blue sky immediately came to mind, the sound of the 'plane' at the beginning and throughout that recording

     

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