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Everything posted by devonrex

  1. I have had depression my entire life, not bipolar, but the beast sure as hell deepens my depression. Now, I am chronic, so the leading up does not really apply but I will act manic when I have any sort of break, to get things done.
  2. Very true, the fact that leeches are used in modern medicine and there are reasons to put holes in someones head that has no relation to demons. Edit: Also, I have been lied to, apparently I leveled up without the need of kittens, so my entire world view is shattered.
  3. This here, this is a big thing, knowing you are not alone, knowing there are people who know exactly what you are talking about and would never say, oh just take an aspirin and lie down or other such nonsense, you know the people here KNOW and you feel less alone. Even in a crowd you can feel isolated by the pain and no one truly knowing.
  4. Funny I mentioned a few months ago to family, if I was like this not all that long ago, I would be covered in leeches, cuts, enemas, and have holes drilled in my head to release the demons, so as little answers as we sometimes seem to get, it is far better than we would have got then.
  5. I am convinced without the dark humor gallows humor, laughing at the beast in any way, we lose one of our greatest tools to go on. Now as to the Finest of British food and drink, there was a store here, I cannot recall the name but it was a decent sized store chain that specialized in British food and other snacks from the UK my Grandma loved. Have to say, since she was a warbride from England and my mom was born there, coming over on a ship before the war was over, I picked up a taste for much of it. Also, cats all the way, hence my name, my Devon is one of the only things that can reach me in the middle of a 10, can bring a smile despite the pain. So, hold on to any and everything that brings light and humor into your world. Sorry for going a bit deep. Also, maybe if I switched my avi, I might get a better score?
  6. Not as much anymore, since shit changes the moment you get 'used' to it, but my biggest 'aura' or indicator of oncoming cluster train was a hellish knot or pain just to the right bottom of the occipital bone, right where it joins the right side of the neck, it would then arc over and behind the ear into the temple and off shit went. I could never decide, if it was bad neck setting them off by radiating pain into the sensitive nerves or if it was just a head precursor.
  7. There is an app for most phones if not all that I swear by called headspace, has guided meditation, half ass tailored to current mood. I find it helps ease the dread and the rest.
  8. A few here, including me, experienced a drastic shift in ch behavior coming off topirimate aka topomax.
  9. I would second this, when I was on it, it was at doses that concerned the pharmacist, requiring heart checks every couple weeks. They did increase it over time, so not a massive dose all at once. The general thinking or use is generally prednisone taper while the verapimal gets onboarded iirc. As to changes, mine tend to in essence cycle forward through a month. like getting hits from 6pm to 6am then have them ease off, then about a week later it is like from noon to midnight. With some outliers like keeping me up for 24 plus hours, they will rotate forward like that in a fairly predictable pattern.
  10. First be careful, I recall my grandfather using nicotine as a very effective rat killer, it is a drug and can be highly toxic in larger amounts. As for smoking and ch, I had quit for over a year and had seen no effect on my hits, but I do smoke again now. I just find it as a distraction, kind of focus my mind off the pain for a while, but other than that, I find for myself it really changes nothing with severity, timing, duration in any noticeable way.
  11. Funny you should say that, CCH has kind of forced me into intermittant fasting and with far far less junk from takeout, over the last 2 years have dropped 130 pounds, while it is good, it went from about 400 to 270, the way it happened is not exactly ideal. Fluorescent light is hell for me. 8-9-10 with the eye running and mucous and pain, I tend to cough on the phlegm, spiking the head, causing dry heaves until it keeps cycling and I vomit. Edit: Pro tip, grinning helps suppress the gag reflex, so I look like a grinning thrashing moaning madman during the bad ones... I do get the same extreme cravings just to eat, like ravenous hunger, then it is gone. Could be the body gearing up. I am sure we burn more calories during an attack. In any case that is my ramble
  12. Full blown chronic for 6+ years, while I was technically chronic prior to 6 years, since I would have at the very least one a week, all the time. So the 'pain free' for x amount of time never fit. I have reduced sensation around the eye, temple, cheekbone. Not numb, just muted, my right eye is in a semi permanent droop, far more in an attack, but still noticeable between, pupil on the same side is also constricted, and less reactive to light. Now, correct me if I am wrong, also just did a quick google, but there is a relation between melatonin and vit D absorption, so maybe not the eyes specifically but overall melatonin could have an effect on vit d absorption? Higher melatonin, more vit d blocked, greater chance of CH? So, having brown eyes would show higher melatonin?
  13. Blue/green eyes here. As for 7 what do you mean come and go? Chronic do not tend to come and go, they just keep coming and coming, the rest looks about good to me.
  14. 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.
  15. 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
  16. See now you are bringing back some old memories from my parents. My dad absolutely loves Stompin Tom.
  17. 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.
  18. I am the same, Phantom of the opera and Ministry on the same playlist. Edit: Phantom, the London cast, to be precise.
  19. @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.
  20. 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.
  21. 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.
  22. 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'
  23. 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.
  24. 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
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