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ClusterBusters

devonrex

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devonrex last won the day on July 25

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  1. 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.
  2. 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+
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. devonrex

    Here's a beer to avoid

    Have a Super Cluster beer in the middle of a cluster attack during a massive cluster fuck.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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