devonrex
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Posts posted by devonrex
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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.
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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...
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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.,
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3 hours ago, johncluster said:
That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened, many people did , who had to endure this kind of torture as prisoners of war....
The pain is bad but compering it to gruesome horror amputations is just insane, way over the top.
You would basically fall into a shock from the pain,,,probably lose consciousness, many times during the CH attack and after 2-3 events like this, you would probably die from shock or a heart attack ....
Suicide rate in CH sufferer would be 100%
Don't take in personally but , this would not help to in explain to people what CH pain is.
My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion
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.
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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.
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Monster, for me is an energy drink like Rockstar or Red Bull, high in taurine and caffeine, many say it helps (Including me) if you drink it fairly fast at the first sign of a hit. In my case, caffeine is also a carrier for pain meds, helping them work and interact faster. I do not recommend nor are they very widely used for ch, but for me opiods have a limited effect for me, never getting rid of them but if they, with caffeine, 02 can take one down even a point it is a big thing.
Some have also referred to the attack as "The Beast" "Monster" but it is likely the references to monster are the energy drink. I choose the monster "zero" no sugar and like 10 calories.
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I had joined here, 3 years ago give or take, totally forgotten anything related to that account, but have been what I call low grade chronic for 20 years or so (Low grad in 1-2 a day, at most daily but usually 1 every couple days.) Bad enough of course, as they rarely tended to be anything below a 6. So after the headache clinic I first went to accused me of drug seeking, I stuck with my family doctor, I ended up on topiramate, long story short, kidney stone later after positive reduction in headaches I was taken off topiramate in the worry it would cause more stones, within a couple weeks my ch morphed into a hydra, 4-6 a day, they had always been in and around 2.5 hours long but the gap between would generally run 1.5 hours. For the first year of this I would get a skip day, usually every 5 days, this window slowly closed so last three years, daily attacks from 4-6 a day.
Laundry list of meds later, dhe infusion therapy was the only thing that actually did -something- it changed up regular schedules, duration, time between, in essence seemed to stick them in a bag, shake them up and dump them out randomly. I was lucky enough to find a better set of neurologist in the same headache clinic I had left and not come back to, the drug accusing dr having left by then. My lead neurologist now specializes in headache disorders.
So, at this point, the ch attacks have somewhat lost their clock like regularity, while nice at first, I now miss being able to try and plan around known factors. Sumitriptan was working at a 1:1 ratio. Lately the efficiency has been dropping off, could be scar tissue from dhe injections 3 a day for a couple months, or just the nature of the beast.
So, as of this moment I am refractory chronic ch, 5-7 a day, break between having shrunk the last few days to an hour and under.
I also did the vit d regimen with no luck. O2 will not abort but will round off the sharp corners, combined with opiods and monster it will take a 9 to an 8, that to most not familiar with the beast may seem very little but one step is a huge leap.
Since it is 9 am, I have not slept since yesterday at 9pm, I apologize for any rambling as my beast is sitting on my shoulder pulling on my eye with a gaff hook as I write. He is being gentle this time. Only a 7.
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I know, as chronic, that I have a slight droop to my right eye now, some discolouration around it, pupils are no longer PEARL (Pupils equal and reactive to light) right pupil is no longer equal to left and is slightly sluggish. All it seems 'normal' according to my neurologist. I seem to have slightly above my old normal right sided nasal congestion as well.
Directly to what you are experiencing, I have woke after apparently sleeping through low scale clusters with the tail end of the symptoms leaving, ie runny eye, swollen, stuffed up etc.
I have not had any precursors such as you have had that were not followed by an attack, though my warning window is abysmally small, 1-2 minutes from droop and sniffles to it ramping up.
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I have had chronic, in the clinical sense (no full month free periods) but 4-5 years ago they were once a day tops or as low as 2-3 a week. Still high level ones, so I was tried on Topiramate (Canadian name use) my pharmacist said and I quote "Ahh, the California drug" I was like huh? She said it is kind of an inside joke, because it makes you skinny and stupid. Took several months for the fuzzy brain, no taste, and other side effects mentioned above to really dissipate, but it cut them to about 1-2 a week, nearing the end of summer...4-5 years ago, ended up with a kidney stone. In hindsight part of the problem was topiramate and I see now, I had one of the rare "heartburn" side effects but since heartburn was semi common to me, it never registered. So eating antacids like candy may have attributed to a calcium build up and to a stone.
So, to wrap up, I collected said painful, yet less painful than most of the beasts, specimen and next time I saw my primary Dr, she sent it out, took me off topiramate not long after as it was a stone consistent in makeup of those that can be a side effect of topiramate.
Now, this is where things went to hell in a handbasket, not long, maybe...2 weeks? They started...5-6 a day, every 1.5 hours, lasting give or take 2.5 hours and rarely anything below a 6. every 5 days or so I would have a skip day, but that faded. I ended at a refractory chronic ch with even a return to topiramate doing nothing (Decided I would rather pass a few kidney stones a month than have the beast) but it did nothing. As of right now 4 years later am sitting at funnily enough a new change, (might be related to dhe) of every hour for the last couple days. So, use with caution, while anecdotal it surprised the hell out of me to read above someone else who had their frequency go out of control once they went off.
Final sum up, it worked, worked well, once passed the most annoying of the side effects and if you have a few pounds to lose.....But kidney stones and for me, they went insane once I was off.
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Just when you think the 10 you are experiencing is the tenist ten you could ever have, you have a new definition of ten. To the point the 1-10 has become more of a sliding scale, with high, mid and lows to each number.
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I tried this about a year ago maybe a bit longer, think it may have cleared some hurdles in Canada faster? In any case, same as a couple of you above, nothing at all, preventative, abortive nothing at all, the best it did was make me look like Billy Idol with a twitchy sneer.
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The usuals above. Also since it is not sound sensitive I will blast music as loud as I can stand, try to lose myself in it, helps with the restlessness, moving to the music.
Bury my face in my cats side and listen to the purr.
Why can't not being in pain be a good thing?
in General Board
Posted
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.