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ClusterBusters

devonrex

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devonrex last won the day on May 11

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  1. devonrex

    Chronic Cluster Patient Pain Free for 11 days

    I would not say the only people are type 1, it can happen in type 2, but it is rarer. Anytime your insulin runs very low, which in some can be caused simply by biology. They do not produce a lot of natural insulin. As in everything, there are studies and who knows if they will be proved cause and effect, I mean eggs, good, bad, good, bad, good, maybe. as one example, but it does not take more than 3 minutes to find credible articles. https://www.acc.org/about-acc/press-releases/2019/03/06/10/29/low-carb-diet-tied-to-common-heart-rhythm-disorder that is a study by the America College of Cardiology. I am not saying "Omg no, bad" just for anyone who is desperate, like some of us are, to look not only at benefit but risk, I weigh every single treatment I do in terms of "If it works, great, is it sustainable? Will it fit my life? Do I have a family history of something that this could make worse?" etc etc. I suppose, I am cautious by nature and while I would love to see this as an effective long term answer for all, also feel people should know to look at the other side of the coin. Even Batch strongly suggests/cautions to go over all of the Vitamin D regimen with a doctor.
  2. devonrex

    Chronic Cluster Patient Pain Free for 11 days

    Sorry, if I came across harshly. I was only offering some other information on a keto diet, it is a form of ketoacidosis, being in a state of ketosis and not recommended in the long term, because of the effects it has on the body, for an episodic, who could use it to mitigate their period, would be ideal in my mind, but long term effects have issues up to and including heart damage from the studies I have read since replying. I was only adding caution, before someone jumped on this because we all want something to work for these fucking things. As to the whole 'attack' angle. Someone got offended when they got called lame after calling another lame then saying the initial thing was said badly after responding badly, pretty sure there is enough blame to go around for bad manners. On my part, I apologize. Also my user name is in reference to my cat, a Devon Rex, who is the only thing that has been able to calm me or even get a smile during high number attacks, simply because she is happiness you can cuddle and so damn empathic her skin crawls if my hand comes near her when I am mid attack, but she will still come to be near me. Because of this I can occasionally, 'set aside' the pain for her sake. Its...disassociation, something something, but it can give me an eye in the hurricane of the pain for a few moments.
  3. devonrex

    Chronic Cluster Patient Pain Free for 11 days

    If it works, great, though from my own research into keto for purposes other than cluster, I keep coming across many things saying it is not something you can maintain, in a healthy way, for a lifetime, it is the definition of a diet, you do it for 1-2 months then go back. Seems doctors do not recommend it for long periods of time. Also, we are all here for the same reasons and simply because someone mentions this is a redundant post as the info is posted in its place, under theory is not lame. I find that kind of reaction, is.
  4. devonrex

    Work and CH

    for up to jumbo d you can get a nice carrier bag, like a dufflebag designed specifically for that purpose, easy open ends to access the regulator, padded carry straps, straps to hold the tank secure, foam support/protection around the regulator and lots of pockets, I used them as a medic in my truck, should not be too hard to source at a medical supply store or amazon or the like, they do make it far easier to transport, they even come as backpacks, I have had to hump one 3 km's into the bush uphill so I know they are readily portable that way. Also, jumbo d should last 43 minutes from full at 15lpm, give or take. Also, have not seen this mentioned, but if you are a pilot or know a private pilot, they can get o2 from most airports to keep in their plane for high altitude unpressurized flight.
  5. devonrex

    Infusion Treatment Question

    If it is dhe, I had the full round, 3 days in hospital maybe 4, iv infusions a few times a day, then syringes and home injections for 6 weeks. For me, it seemed to scramble up what was pretty regular scheduling, duration. While not ideal, I am refractory, so having something do something was a relief, the home injections sting and had a very large sense of euphoria for a week or two after the iv infusions, in the end, things went back to 'normal' once I was a few weeks out from my last home shot. The other thing I recall, is if it does do something or 'work' it may require upkeep or recurring treatments.
  6. devonrex

    Why can't not being in pain be a good thing?

    Good news is, I am no longer in a state of dreaded anticipation, bad news is I am no longer in a state of dreaded anticipation. Going to send sumatriptan a Christmas card though.
  7. devonrex

    Why can't not being in pain be a good thing?

    That's exactly it Moxie, it isn't I truly want one, but I am so used to them, the dread is nearly worse than getting it done and over with and....yes in a sad way back to 'normal'. They are passing thoughts, just random ramblings mostly, I tend to record things in a stream of consciousness sort of way. While today has been better there is that nagging thought "It has had some rest, if it comes back, what kind of hell can I expect?" I say I have been chronic for four years, but I tend to mark the four year point as when they went from 5 at most a week to 5 a day, 20 years I have had them visiting at least a few times a week, but after weaning off topiramate they went insane. Tried going back on, did nothing. Came off because of a kidney stone, knowing then what I know now, I would pass kidney stones daily to be back down to 4-5 a week. 36 hrs or so now and not even a twinge or shadow, my wife snaps her head to me the moment I even sniffle, so I am not the only one on edge... Overall today has been better for the fear, but it is not gone. I also know what you mean, the devil you know vs the devil you think may be coming. Cannot decide if episodic is 'better' or not. There is a bit of comfort in the knowing they are there and not waiting to be mugged in six months. Anyway, ramble done. Thank you all for listening and we are all in this together no matter our distance.
  8. devonrex

    Why can't not being in pain be a good thing?

    I was originally here...2-3 years ago under a login and or email I have since forgotten, I did make the redneck o2 reservoir for my concentrator, worked like a damn, have since gotten my dads o2 tank he kept in his plane and he gets it filled at a small nearby airport for me. I use the tank for horrible hits and the redneck for lower grade. I did start, try and do the d3 regimen following as it was laid out, sadly, I was one of the 20%. Sumitriptan injections work, though a few recently have been hit or miss, could be a bad injection, hit scar tissue, my thighs and stomach have seen a few by now since doing the dhe regimen (Thank god I had a canny doc here, if they prescribed an 'off' dosing from the premade syringes, like 5ml or 7 ml, I could get it compounded at a pharmacy in a nearby city for a fraction of the cost, just had to make up my own needles, otherwise I think I may have turned to mugging people in alleys once it worked the first time if I had to then try and find 3000$ a month to keep them going....) o2 rounds off the sharp edges as do oxycocet, though at best between the two I can take a screaming ten to a pacing 9, though the magnitude between a 9 and 10 is a giant leap. Other than that, as I said in my little rambling re-intro, everything else has failed. Also as of this writing, still nothing, while scared shitless that the beast can somehow 'save up' energy, it has been an overall productive, if filled with nervous energy day.
  9. devonrex

    Why can't not being in pain be a good thing?

    Its the dread I think, so used to something day in day out then....nothing. ch Stockholm syndrome? So much nervous energy, just putting it out there helps a bit. Thank you for helping me find a bit of humour in it.
  10. devonrex

    Why can't not being in pain be a good thing?

    I am considering having a drink or doing some other 'trigger' simply to get it over with and yes it is that kind of insane humor thing, gallows humor. Just reading that sentence seems insane...
  11. Woke up this morning, without an attack tossing me out of bed, here I sit 5 hours later a complete wreck, this feeling of impending doom, other shoe dropping, watching a car accident in slow motion feeling in waves. I should be happy, no pain, no headache. For the better part of 4 years refractory chronic, first couple had a day or two, last couple years the breaks shrank. In two years I have never, ever gone this long without one, at one level or another. Should be over the moon but I am crawling out of my skin, this is fucking insane. Has anyone else been through/like this? What kind of thing makes you dread having it so much, that when you don't you can only think 'it' must be saving up or something.,
  12. devonrex

    Describing CH to non-believers

    During my net trips and so on, there have been accounts of people who have ch and have had traumatic amputations, they would choose the amputation again, same for childbirth, gunshot, pretty much any physical trauma you can imagine, hell I would pass kidney stones 5 times a day over this. Shock and pain closest is neurogenic shock, which can be caused by a sudden extreme onset of pain, causing blood pressure to drop, great thing about most of us, pain goes up on a curve, not sudden onset, so we can hit top of the line pain and not suffer the neurological shock effects. And yes, I have screamed nonstop, tried knocking myself out on a wall, there is a reason they are called "Suicide headaches" I speak from a former (Due to ch) first responder and remote field medic training. Shock is huge in that case, funny thing about things like traumatic amputation or severe injury, once the incident has finished, the body tones or mutes the pain signals down. Beside the initial massive outset, the pain does not stay at that peak. Except when a brain and a nerve decide to say, hey lets crank this up and stay there. Many neurologists and primary physicians are also seeing in CH sufferers ptsd, anxiety and depression. I have had really bad heatstroke, the nausea, dizziness, disorientation, dehydration, and that to me is nothing like a cluster attack, have had a half broken tooth abscessed and that is nothing like a ch attack. It is bar none the worst pain I have ever experienced in my life to the point walking into traffic is something I have considered, hell I have literally begged my wife to take me out with a baseball bat. Maybe you have been 'lucky' I do not know or a huge pain tolerance but even the Kip scale, pretty much the accepted pain scale for ch lists a 10 as screaming, head banging, er, suicidal.
  13. As Batch said, a large part is the amount of sunlight and the quality, since Canada gets sunlight filtered through more atmosphere due to angle, even in the summer it is not the same as say the equator where it is simply the depth of the atmosphere and not the depth plus angular distance. Add to that in the deep winter months we end up with maybe 8 hours of 'daylight' that's including dawn, dusk and we are overcast quite often. So, long story short northern climes people have a hard time producing vit D simply from the sun and should look for it in diet or supplement, ch or not. So, yes even with good doctors, here there needs to be a reason more than "Might be vitamin d deficient" for that test, because the answer almost universally to that is 'Umm, it's Canada, of course they are vit d deficient." On that note, have there been studies if moving from a northern clime to a southern or equatorial climate has improved ch?
  14. devonrex

    Cluster Headache Poem

    Gave me goosebumps and almost made me cry, very vivid imagery. The one I use to try and describe it, is ask them if they have ever hit their thumb with a hammer or really badly stubbed a toe, if they remember that one instant of peak, brain flashing, breath stopping pain, which usually then quickly subsides to relatively normal pain. I tell them to think of that, freeze that pain at it's peak, then have it for a few hours. Or simply say imagine a large hook, through your left temple, through the back of your eye, exiting just above the eyebrow, now, someone has the end of that hook and is pulling a steady pressure, just short of pulling it through the bone and out.
  15. In Canada, for example, since the entire population is vit d deficient basically, a lab will not do a vit d test, unless it is for I believe liver function? My neurologist had to order the bloodtest with I believe that as the reason. I may be misremembering, but there is another condition that presents/can be detected with a vitamin d test. So in Canada when everyone is going to come back likely vit d deficient, there needs to be a better reason than "They might be vit d deficient" or a lab will not do it.
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