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Everything posted by devonrex

  1. devonrex

    Is it Cluster Headache - need help

    I swear by monsters, they do help me. I make sure I get the zero calory ones though, no need to chug 100's of mg of sugar too. As for 'waves' mine tend to come in, ramp up in fairly predictable line, then peak and stay, with the occasional sharp stab or 'pulse'. Nice (relatively speaking) thing is I can usually predict where it will end up by what level it starts at. Starts a 5 will likely peak at 8, start at a 7 or 8 and I am going to be fucked. It is also quite common for times, frequency, start and stop times, pretty much any thing that can be changeable about ch, will change over time.
  2. devonrex

    Is it Cluster Headache - need help

    The location of the pain along with the signs and symptoms you feel during are classic cluster signs. Yes they can change in timing, length, frequency, go from episodic to chronic or vice versa, as several say here, the moment you think you know your cluster, it changes. O2 is a go to suggestion, 15-25 litre per minute in a good non-rebreather mask. 100% oxygen. If your dr knows what clusters are you are ahead of the game, so few do. I would get the other tests, as a precaution. Topamax aka topiramate has some unpleasant side effects, and is not always the first go-to drug. Generally any abortive meds, such as triptans and such for clusters are rarely used orally, since it takes a while to work, nasal triptans or injections work far faster, but triptans can cause rebounds if over-used. If advil is working for you, you are very lucky most pain meds up to and including opiates and such tend to do nothing for a cluster. I would go through the diagnostic criteria with your neuro, get the tests to rule out other causes and maybe ask/talk about a prednisone taper, verapamil combo before going with the Topamax. Others will have more suggestions and ideas, you may also want to have a look/search for the vitamin d3 regimen here, many have had great success with it.
  3. devonrex

    Some advice please

    The others have good advice on meds and such, the dread I understand, for me meditation has helped with that or keeping myself occupied with anything that takes some concentration to keep my mind off of the inevitable next hit. There is a really good app called Headspace, has you put in your mood and other keywords and suggests one of the guided meditations, most of the free ones are quite good, have no info on the paid portions, have only used the free ones. I was a firm "All that meditation crap is hokum" until I tried it and it really does help with the dread and some other feelings that come with this beast.
  4. devonrex

    IMPORTANT signs along the way

    I too get the jaw and neck tightness, have had digestive issues my whole life but they predate my first remembered cluster, so I do not think they are connected. Screen time is not too bad, but bright light and especially fluorescent light kills me. I have mentioned at the headache clinic in the hospital I go too, that fluorescent lights are a horrible idea to have there. I am a stomach sleeper, used to be a side sleeper, have never noticed any changes between my sleeping position and hits. I am full blown chronic, daily hits, the only saving grace is a '10' is at most 3 times a week, the rest are 7-9. I find myself with no appetite during a hit, generally I will go through a few hits then the moment one ends (No predictability) I will suddenly be ravenous. I do have some tmj issues, clicking locking jaw and extremely painful catch and pop when I bite occasionally. My first diagnosis for cluster were actually attributed to tmj issues, was years before I got an actual diagnosis.
  5. devonrex

    Occipital neuralgia

    Is it possible it could be SUNCT or SUNA? They are described as sharp stabbing pain, in much the same place as a cluster, but short lasting 10 seconds to like 4 minutes, SUNCT has both redness and tears in the affected eye and SUNA has one or the other and not both. I only remember these because I got an email from here about people with clusters and SUNCT or SUNA, it was a poll. To me, what you describe sounds very similar. But of course, it does sound similar to occipital neuralgia as well. This condition sometimes feels like one of those logic questions, all thumbs are fingers but not all fingers are thumbs...
  6. devonrex

    Looking for clusterheads who also surf?

    Mechanism of the wipeout seems like you may be causing trauma to the trigeminal nerve area, plus the water up the nose at impact speeds could hit the ganglia up there, it sounds similar to a cluster and thinking about it, back when I was young, waterskiing I had wipeouts that caused similar. Just never quite as intense as my clusters, after an injury or impact the pain tends to fade downwards from its split-several second peak, clusters tend to peak and stay for the duration. So short answer, it sounds similar to a cluster. Mine tend to feel like a spike through my temple, back of eye and out my eyebrow area with the tears and nose running/stuffed.
  7. devonrex

    Topamax thoughts?

    On a lighter note, my pharmacist called it the "California Drug" because it makes you skinny and stupid. Can cause loss of appetite and when I was on it found it had a very large affect to my cognitive functioning, was feeling kind of dopy and unable to focus,. that all faded in time and when I went on it it cut my frequencies down, mind then I was having maybe 4-7 in a week and it took it to about 3 a week, issue for me was it cause horrid heartburn, which caused me to eat tums like they were candy, this in turn (likely) lead to a kidney stone, which can be an issue with topiramate. I was taken off of it because the stone I recovered and they sent for testing was consistent with the type that can be caused by topiramate (Topamax). In hindsight I should have stayed on it, as once I went off my frequencies skyrocketed, from at worse prior to the med 7 a week, to 5 or more a day, could be anecdotal, coincidence or whatnot, but I know at least one other on this board reported the same. I would have passed a kidney stone every bloody day than have the frequency I am at now, this all happened about 5 yrs ago. So ymmv. In summary, it worked, was a probable cause of a kidney stone and going off was bad for me.
  8. devonrex


    No apologies necessary, I only meant, just being here is to me, helpful.
  9. devonrex

    A Cluster Headache Is

    You are quite good in your descriptions, scarily so. Take some comfort in what you say often, when you think you knpow them, they change, so perhaps, this change will be them not coming back like they have before, if the only constant is change, then it is a possibility.
  10. devonrex


    I did not even know there was a leader board, I just judge helpful by being here and being another person in the trenches. So, in that metric, you surely are.
  11. Gammacore uses direct electrical stimulation of the nerve pathways, much like a tens machine and Dr Hos machine, direct subcutaneous electrical stimulation, I have tried the Gammacore which you use a conducting gel to ensure good contact. So, it is not quite the same as electromagnetic radiation.
  12. devonrex

    Horses with cluster headaches

    No, 'they' don't, but sadly many take that into their own hands.
  13. devonrex

    Beast wants to come back

    Fall, winter, spring are the worst for me, they tend to ramp up in intensity through those times, once things settle into summer they tend to taper to the lower, relatively speaking, pain thresholds. Hopefully when the weather changes and all the rest that come with spring taper off so too do your attacks.
  14. The "California drug" effect does fade after a while. That's what my pharmacist called it, because it made you skinny and stupid. It worked well and cut my frequencies down quite a bit, be ready for possible heartburn, that was one of my major issues, then ate tums like they were going out of style, so in combo, ended up with a kidney stone, topiramate can cause those as well. My main issue came, once I stopped, my cycles went insane, frequency, length etc. In retrospect I would have dealt with kidney stones every few months and not had the cycle I ended up with. In any case, it worked for me, to cut frequency, the side effects fade but I and a couple others here have had bad experience once off and when I tried again, it did nothing. So, good and bad anecdotal evidence for you.
  15. 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.
  16. 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.
  17. 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.
  18. 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+
  19. 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.
  20. 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.
  21. devonrex

    Here's a beer to avoid

    Have a Super Cluster beer in the middle of a cluster attack during a massive cluster fuck.
  22. 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.
  23. 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.
  24. devonrex


    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.
  25. 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.