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Everything posted by devonrex

  1. I do the monster with painkillers because the caffeine and taurine helps, can drink it far quicker than a cup of coffee and the caffeine does helps speed along/increases effectiveness of most painkillers, there is a reason it is an active ingredient in tylenol for example. As to how many, I tend to 3 a day, but only the 0 sugar, no need to chug hundreds of calories a day.
  2. Johnny is a good one. This one hits all kind of feels as does the original for different reasons. Speakinf of lost singers. Bop by Dan is one of my moms faves. This goes into the 'hometown' list. More familiar might be "She ain't pretty" One more for the lost
  3. See now you are bringing back some old memories from my parents. My dad absolutely loves Stompin Tom.
  4. Well, to be fair, he did learn a thing or two from Charlie don't you know. And his dad did run whiskey in a big black dodge.
  5. I am the same, Phantom of the opera and Ministry on the same playlist. Edit: Phantom, the London cast, to be precise.
  6. @JussSeems our tastes align, tend to put on 80's or early 90's and crank it, singing along, rocking letting my leg bounce in time, all as a distraction, my headphones are a got to for a bad one. Is on right now.
  7. For what it is worth, when I did the DHE protocol in hospital, it scrambled my usually predictable times. Kept them scrambled for several weeks.
  8. I do notice that they tend to hit me right after exertion or stress. In the period I am relaxing or coming off an adrenaline hit. The more exertion or stress, usually the harder the hit. IIRC there is a phenomenon that the brain 'pain gates' a newer or sufficient pain will temporarily block one pain so you register the second. Likely far more complicated than that.
  9. This will be the fourth time I have tried to respond to this, you did warn it was a trigger. In part of the same boat, was working as a remote site medic, with chronic but at that time it was 2-3 a week, never enough of a pain free break to be considered episodic, now even that was getting tiring, so went and tried topirimate, it helped, down to about one a week, then the kidney stone, then being taken off the topirimate, then it went insane, 6-10 a day and just like that I was done that line of work, fast forward several years, took a long time to realize this is the new normal and am exploring home business, things I can do when it is not a kip 10, or in between hits, can work my own time in my house. Even something small like painting miniatures can bring in money, crafts, editing. I had to kind of go from a 'job' mindset to a 'anything to bring in money'
  10. Pretty sure it can be forgiven, chronic means we have little hit free time to post. I feel you, chronic, half a dozen hits a day, sleep wake cycle is garbage, family is helping me, feel like a burden, depression. I feel you, know you are not alone, even if I feel sad when I find another. For them. We are a bunch of tough people, crying, feeling lost, none of that makes you less tough, just human.
  11. Not exactly close but it may be worth it if possible. She works out of polyclinique center-ville in montreal, likely one of the top headache neuros in Canada, has a few papers etc. She was my neuro in Calgary, before she decided to return home to be closer to family. Elizabeth Leroux MD, FRCPC
  12. devonrex

    june 24

    That is the reason the link CH with the hypothalamus and diurnal cycles, as it is in charge or a component of your sleep wake cycle and seasonal cycles. It is what informs and regulates the "alarm clock" nature of CH
  13. I feel that, my pharmacist called it "The California drug" because it can make you skinny and stupid. I was only asking, as anecdotally, I and I know several others here have had our cycles go into overdrive after stopping it. I had to stop it because I got a kidney stone and within a few weeks had gone from 3-4 a week to up to 6 or more a day with an increased intensity. Though, I am chronic and not episodic. All that aside, the advice here is solid. You can also try meditation, or guided. I used to think it was hooey, but it does help to relieve that anxiety and other feelings that come after a bad hit etc. The other thing not mentioned here is energy drinks, many swear by the 5 hr energy, chugged at the start, the same with like rockstar or monster. I stick to the sugar free options and might want to talk to a doc before spiking caffeine and other intake with them.
  14. Out of curiosity, have you or had you stopped the topiramate recently?
  15. Sadly, in an ER setting, having knowledge of what CH is, would simply help a nurse triage it lower. ER triages on the greatest threat to life, while the pain feels life ending and you may want to end yourself, the actual attack will not physically cause you to die thus, you are triage as low on the scale. That is why saying chest pain works, yes because the consequences of a heart episode can get horrible and fatal quickly. I am chronic have had my share of wrecking my throat screaming for a couple hours, I know the pain. That being said, not being jumped to the head of the line is understandable from a strictly medical point to be seen on a threat to life scale.
  16. I see a lot of good advice for treatments. Might I suggest a guided meditation app like headspace? While it does not do much for the pain and attacks, I have found it extremely useful in between attacks to calm the anxiety, the other shoe going to drop feel, the fear that we have all likely experienced waiting on the next.
  17. To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them. I am a refractory chronic ch sufferer with 5+ attacks daily, from all the other reading here I have seen many many variation in efficacy to treatments, to suggest if one thing does not work then you do not have this hellish thing, is a bit of a slap to those who do have this and are getting fucked because shit is never 100% with ch. Other than it 100% sucks.
  18. I am not sure about bp and blood ox levels, but breathing inadequately definitely will, so will things like asthma, hx of lung issues, smoking, allergies. The bp comment was simply that mine skyrockets in an attack, but could be because I tend to 'bear down' to try and deal with the pain, while also stifling vocalizations to more high pitched squeals or squeaks rather than screaming. You may also want to make sure the pulse ox is returning the proper pulse rate for you, check by much the same as breathing rate, measure pulse for 15 seconds then multiply by four, if it is not reading properly, which can be caused by thicker skin, cold extremities, callouses, movement during monitoring, it will return inconsistent readings. Or just watch the pulse indicator while taking your own pulse to see if they match up.
  19. Sorry to see you back, but at least you are among those who know what you are going through (Relatively speaking as we each have our own tailor made beasts) I have decided pets, particularly cats should be part of a ch'ers coping kit. My devon is one of the only things during a hellish hit that can bring me some peace. Hopefully, all gets back on track for you fast.
  20. You may want to check your breathing rate, the easiest/standard is breaths in 15 seconds x 4. May also want to evaluate efficacy of those breaths, full deep normal, short and gasping. It does not take a large variation in breathing changes to affect pulse ox. I do find the bp odd, at least for me, I have had a full 10 while at the DR, they checked bp during that time (sadly, o2 rarely aborts for me, but will lower intensity) but my heart rate and bp were way high bp was abut 180-90 over 100/120 (normal is about 120/80) high heart rate combined with inadequate breathing can lower pulse ox quite effectively.
  21. I will go from the worst attacks or 'wakers' at night to sleeping nights and 6 am kick me in the face and through the day ones, usually in cycles of them seeming to rotate forward through the clock. The one constant for ch is it is not consistent. I truly wish there were more headache clinics out there for everyone, once I got sent there, I was diagnosed and immediately felt 'validated' by a team of neuros whose specialty was headache disorders.
  22. LSD and Psilocibin tend to spend time in the 'brain fat' and occasionally will pop loose. This is a simplified explanation, but when that fat metabolizes or occasionally gets loose, it can cause a flashback the frequency and chance of it happening fades with time and not using. I am by no means an expert, this is simply what I had learned years back.
  23. Always been chronic, the frequency has simply changed for me, the fear seems part and parcel with ch, fear of the pain, fear of the next, fear it will be worse, fear when you get a longer break than normal because you think it will come back worse, fear a treatment will not work, fear it will then stop working. On and on they go, many of these are the same mind treadmills that you get with ptsd, I mean subjected to unimaginable pain for upwards of hours, to get a respite, knowing it is coming agai, sometimes with no rhyme or reason, sometimes fearing the simplest things could trigger. For me, trying to focus on the now, helps in between attacks, guided meditation helps calm me, even the mindset that this could be as good as it gets helps in some ways then you turn to coping with what it is right now and not what it might be later.
  24. My neuro had said, at least for chronic, slight permanent droop, constricted pupil, reduced sensation, puffiness below the affected eye are all common, just never heard of a lump personally.
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