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devonrex last won the day on June 20

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About devonrex

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  1. devonrex

    New Member -20 years of this- Pittsburgh

    Also, if you are ok with sumatriptan, you may want to look at the nasal spray if not the injector, they work far faster than a pill. It was a wonder for me, only thing that really touched them.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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...
  7. 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.
  8. 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.
  9. devonrex


    No apologies necessary, I only meant, just being here is to me, helpful.
  10. 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.
  11. 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.
  12. 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.
  13. devonrex

    Horses with cluster headaches

    No, 'they' don't, but sadly many take that into their own hands.
  14. 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.
  15. 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.