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ClusterBusters

devonrex

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devonrex last won the day on July 25 2019

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  1. devonrex

    Longest possible period of maximum suffering?

    Also the 1-10 scale is subjective, if you have, as far as you can recall, never felt that level of pain before, it is the most pain you can ever recall feeling, that is a 10. 10 is described as or referenced by "The most pain you have ever felt" not do you think you could feel more, just the most pain you have ever had up to that moment. Kip scale adds some more detail and thresholds, but it does just boil down to "Is it the worst pain you have ever felt". For my perspective, at one point in my life the kidney stone I had and passed would have read a 10 to me, but thanks to these lovely things and a reshuffling of my pain scale it would now fall around a 5 or 6. So until something hurts more, the most pain you have ever had is a 10, you feel more eventually, that becomes the 'new' 10 and the old '10' becomes a 9. Anecdotally, I have also begun using two scales for medical issues. My cluster scale for cluster appointments, neuros etc. But I wipe cluster pain from my scale if I go in with say stomach issues or the like, otherwise your pain scale is wildly skewed compared to what a triage nurse would understand. You tell a triage nurse kidney stone pain is barely a 5 they look at you like you are off your rocker. For the op I have been somewhat lucky as full on "10"'s are a once or twice a week occurrence, the rest falling below 10. The ending of this winter where I live has been pretty chaotic, cold, warm, hot, windy, chinooks, snow and cycling pressures like nuts, so the other day I got my first 3 "10"'s in a row with the rest that day being just below that. My attacks, lucky me, go about 2.5 hours, it seems the 10's calm a bit after 1.5 hours but that could simply be exhaustion and a kind of mental numbing to that amount of pain over that amount of time. so for me that would make it 7.5 hours of the most pain I have felt in my life, with maybe 1.5-2 hours pain free split amongst it.
  2. devonrex

    Lithium or Occipital nerve block

    I went the lithium route, never managed to get to the therapeutic levels simply because I am treating for low thyroid and every time I went up in my lithium dose my thyroid levels would tank for some reason, so had to up my Synthroid, stabilize then try to go up again, I ended up hitting a point of no return where I could not increase lithium without seriously worrying about my thyroid levels as I could not go up any more on my Synthroid, in the end, the lithium did not do a lot for me, improved mood but made me a bit...blah and omg the peeing, considering I was doing the prednisone dose and taper at the time, I thought I could not exist outside the bathroom for the amount of urinating I was doing. Occipital nerve block, was miss the first two times simply because I believe they 'missed' the third was done by one of the leading neurologists in Canada specializing in headache disorders, Dr LaRue and she did it in a semi-circle around the occipital bone, I know she 'hit' simply because it triggered one, the only issue was the block for me only seemed after that as 'topical' feeling did nothing for me. As a note, I seem to be one of the 1% of the 1% of refractory chronic clusters that have little to no relief from nearly any treatment. 02 takes the edge off, has never aborted, sumatriptan was the only thing that aborted, after about a year it became 3 in four injections aborted with the one partially aborting. When it got down to 50/50 and they doubled the price of even the compounded injections, I ended that. I also had tried the nasal ganglia block, the needle up the nose, while my eye and cheek went numb, it provided no relief. One of the other things that seemed to at least affect the beast for me was a 4 day in hospital dhe infusion, it seemed to scramble my times, intensities and occasionally the duration, they stayed in flux for several months after even doing at home dhe injections, though they did make me feel rather off. So if not tried and you have a good Dr, look into the Dihydro ergotomine regimen.
  3. https://www.msn.com/en-ca/money/topstories/move-over-pot-psychedelic-companies-are-about-to-go-public/ar-BBZUBn2?ocid=spartanntp Looks like companies employing psychedelics for medical study are going to go publicly on the stock exchange in Canada. Quite a bit of good news in there, getting granted breakthrough status for depression, long term investment opportunities for US companies that want nothing to do with things like Cannabis because of the legal murk in the US, psychedelics on the other hand are approved.
  4. devonrex

    Thank you for your Service

    Lest we forget. John McCrae, May 1915 In Flanders fields the poppies blowBetween the crosses, row on row, That mark our place; and in the sky The larks, still bravely singing, flyScarce heard amid the guns below.We are the Dead. Short days agoWe lived, felt dawn, saw sunset glow, Loved and were loved, and now we lie In Flanders fields.Take up our quarrel with the foe:To you from failing hands we throw The torch; be yours to hold it high. If ye break faith with us who dieWe shall not sleep, though poppies grow In Flanders fields.
  5. devonrex

    Attacks after Sex

    I find the build up of tension then the sudden release of sex 100% triggers one every time. Being chronic, it really sucks since I am never 'off cycle'. Though I have never noticed increased frequency in the days that follow, simply the culmination of the act triggers a kip 8+
  6. devonrex

    Do Cluster cause Physical Damage?

    I know my neuro told me the permanent droop I have now on my right eye is caused by them as well as topical numbness and a slightly constricted pupil on the same side as my attacks are all normal, especially in chronic but will fade when or if the attacks stop or diminish, so not permanent damage but physical effects that persist beyond the immediate attack.
  7. devonrex

    Just a question

    Usually half hour to an hour and a half after laying down I get hit. Laying down is impossible when I am being hit, ratchets them up for me. I know one of my neuros asked "Do you lay down in a dark room when you get one" my reply "Oh fuck no" she kind of laughed and said that should be part of the diagnostic criteria because she gets that answer often for clusters. And yes, hard exertion then the relax phase I almost always get hit, thus the build up and release of tension in other activities are a guaranteed hit for me. I can occasionally get hit while in bed, stagger to the living room and sit in the recliner and fall back into a fitful sleep, only if it was a hit just enough to get me up and once no longer prone it drops in intensity a fraction.
  8. devonrex

    Emergency room experiences anyone?

    My wife has suggested ER to me on occasion, being a former medic, family in medicine, too familiar with triage and my timings to even bother considering it. Aside from ambulance, would be hard to get there as my wife does not drive. So that's expensive and by the time I see anyone who could do anything I would be out of the attack naturally, just growling, thrashing and pacing with nurses shaking their heads thinking that I don't know what a pain scale is.
  9. devonrex

    Tyramine 'cheese syndrome' interesting

    Wonder if this relates to those people who experience severe headache or hangover headache from red wine. My only vice on that list is aged cheddar, otherwise alcohol is now anathema to me.
  10. devonrex

    Here's a beer to avoid

    Have a Super Cluster beer in the middle of a cluster attack during a massive cluster fuck.
  11. No experience with botox save for 3/5 people saying I should try it because x friend with migraines had good results. I do not experience migraines, so that may speak to you Mox who does, might be worth checking. As for occipital nerve blocks, had...4? First three did next to nothing, 4th was done by someone far more knowledgeable of them and involved, about 5 needle moves all around the occipital bone at the back of my head, while it did not stop or even arrest them, I am positive they were in the right spot, since it triggered one on the fourth needle insertion and injection. I had less severe ones that week (Chronic with 4-6 a day) though that does not in itself mean it was the block, as levels can go all over the map whenever they want. Bottom line, keep hearing a lot of positives from the botox for migraine. As well as average results for clusters from blocks.
  12. devonrex

    Pain down neck and into shoulders

    A bit of a necro, but I had tried that years back, what I had was IMS (inter muscular stimulation) seems to cause muscle spasm when a thin needle is pushed into the site of a knot or tension, then relaxation, it was doing good for general muscle issues, part I think caused by stress during. But I stopped doing it the moment it was tried in my jaw muscle, I do not know if it irritated the trigeminal or what but it triggered a 10, without even a ramp up, it was immediate and off the charts. It had also set off others when it was done high on the back of my neck/head, near the occipital nerve. This is of course 20/20 hindsight as I was not diagnosed at the time and they thought it might be a tmj issue.
  13. devonrex

    Freezing

    Before I was diagnosed, this was about the only thing I would get any relief from, sit on the floor of the shower, water as hot as I could stand, sit with my head bowed. Eventually it stopped being nearly as effective, but at this point I have topical numbness around my attack site so that may be a reason. I do tend to get cold during attacks on occasion so sit in a hot bath. Or shower. I have never experienced getting too hot, only cold.
  14. devonrex

    The beast has returned

    Seven, eight, better stay up late. Nine, ten never sleep again. Totally stealing the Nightmare on Elm Street analogy. Currently in that phase of mine, seems to rotate slowly forward through the clock. As to that type of cycle, as I just mentioned, mine seem to slowly rotate forward through the clock, but I am chronic, not episodic. I ill have a time when the worst hits are at night, then slowly they cycle forward until the worst are through the day, so I end up chasing sleep and in essence switching from night shift to day shift throughout a month.
  15. 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.
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