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Title: Newbie to the board, old friend of CH's... Post by Lachesis on Jan 30th, 2003, 12:55pm I never knew such an informative board existed! :o Experiencing something new as I type this. An occasional "jolt" of pain that seems to run from the back of the ocular cavity to the base of my neck... It lasts for a fraction of a second, and sometimes it's intense enough to make my head move. For the past 7+ years, I've had no "prewarning"s from the beast, and the onsets are seldom predictable (oww! there it is again!) - just a quick progression of pain from the eye to the entire frontal right side of the head that takes maybe 10 minutes to mature into a full-bore CH. Funny thing is that I was in remission for the past two or so years. Believe it or not, the episodes were put on hold, since I got married! Now, the old friend is back (still happily married, mind you). A little off-season, but he's pretty happy to be back >:( I recently quit smoking (on the patch now), and it has definitely contributed to the return of the episodes. I'll sneak one here and there, to lessen the stress that triggers ::) I usually take Imitrex orally, and recetly was introduced to Zomig (oral). The problems with the pills are: 1. it takes a while for it to kick in (20 minutes or so - by then, I'm a drooling/tearing mess on the floor) 2. side-effect of hypersensitive extremeties (especially to heat). I regularly take Excedrin (3 pills at a time) like I eat Altoids - does a number on my stomach, but it keeps the beast away half of the time. Just wanted to say hello, and see if anyone here has had the same "jolt"... ??? |
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Title: Re: Newbie to the board, old friend of CH's... Post by parrothead on Jan 30th, 2003, 1:14pm Welcome Newbie, I swear we must be related somehow. I am also a Newbie to the board as of yesterday. I also started the patch just this week but sneak a couple a day. I too, pop extra-stength excedrins 3 at a time. I am also sensitive to heat. However, when I get my CH I pop an Amerge and take a shower as hot as I can stand. Once I get past the sensitivity to the heat It will in most cases help my pain and even sometime kill the beast. At least until the next time around. However, from what I have read, it seems that most people with CH prefer cold. OOPS! Forgot to tell you, I do indeed get those same "jolts." This is a great web site with lots of people who have masses of information. I personally just had to get past the crassness of some. |
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Title: Re: Newbie to the board, old friend of CH's... Post by Roxy on Jan 30th, 2003, 1:51pm Hi Lachesis....welcome ;D Sorry your cycle is back. I've never experienced the "jolt" in my head (but, sometimes I get a pain in the ass..LOL). I would recommend you lay off the Excedrin, you might get some nasty rebounds with those. There's not much OTC stuff that works. Get some imitex injections or nasal sprays. The sprays don't work for everyone, but most people have very good luck with the injections. Your main friend will be 02. Try to get some pretty quick.....it usually does real good for people. Just click on the buttons to the left and read, read, read. Take care, Tracey |
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Title: Re: Newbie to the board, old friend of CH's... Post by brain_cramps on Jan 30th, 2003, 1:55pm on 01/30/03 at 13:51:57, Roxy wrote:
Roxy: As opposed to who (or what)? ::) ;) |
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Title: Re: Newbie to the board, old friend of CH's... Post by marty on Jan 30th, 2003, 2:00pm Welcome Lachesis.. I just had to respond to this one.. SAAB - do they still make those ;D Just kidding - had many of them myself back when you had to mix the gasoline with oil when gassin up.. OMG, I am soooo old! Anyway, don't know much about those lightning spikes that you get - for me it goes from nothing to full force with little or no warning at all. I have a feeling that you may want to ask your Dr for O2 and use a non-rebreathable mask. I use the O2 at 12 + Lpm. Imitrex Injections are also a good abortive, along with Maxalt 10mg that disolves on your tounge. Hang in there and read as much as you can on this site. Marty |
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Title: Re: Newbie to the board, old friend of CH's... Post by Lachesis on Jan 30th, 2003, 2:07pm Thanks, Parrothead & Roxy! Language comes in different forms - the message is the same; "CH sucks!" After reading up on the VAST info database, I've been looking at the oxi-pak (I forget the MFGer). Holy smokes, though, I didn't think I'd need to dive into heavy-duty medical equipment. I've been relying on the Imitrax and OTC stuff. I've resigned to the fact that these are the cards that were dealt to me, so I just suffered. Never occured to me (until now) that I could curb it, and to do so requires O2 tanks!!! :o I'll keep reading. ...that Bleu Cheese and Vinegar blurb is interesting :P This board is great! |
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Title: Re: Newbie to the board, old friend of CH's... Post by Roxy on Jan 30th, 2003, 2:23pm Lachesis, 02 is probably the cheapest abortive you can find. I use welding 02 (couldn't get a script). I can fill two LARGE bottles for $30. Masks are around $2.00. Heck of a lot cheaper than imitex. Tracey ;D Grant....it's all relative!!!!! |
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Title: Re: Newbie to the board, old friend of CH's... Post by Lachesis on Jan 30th, 2003, 2:26pm Whoa, by the time I posted my reply, a whole bunch of clusterheads beat me to the punch! :o OT: SAABs... they don't make them anymore. GM owns them, and they are not true SAABs. I own the last of the pure breed, and am co-founder of the SAAB Club of Seattle ::) I must be a masochist - SAAB ownership comes with it's own HEADACHES...!!! ;) 12LPM??? That's a lot of fuel into your lungs! Do you pant or breathe normally? These oxy-paks can handle the 12LPM rate, but it'll probably go empty on me at the 15-minute mark - the peak of the dancing session! What equipment are you all using? Do tell, do tell! These "jolts" that I am experiencing are very new. Just started a few days ago. Never had them during my years of the walk with the beast. To stay in the spirit of Swedish automotive nomenclature, I should call these "jolts" "Viggen"s ("Thunderbolt" in Swedish - also an old SAAB fighter-jet)... Sleepless (with a frikkin' CH) in Seattle... |
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Title: Re: Newbie to the board, old friend of CH's... Post by marty on Jan 30th, 2003, 3:11pm Hi again.. My experience is very limited compared to many on this board. I hope that they will post more in-detail info for you. As for me, When using the O2, I just breath normally and the tank will last for 30 - 40 minutes. The point is to use it as soon as the first pain starts. My Dr told me to use max 7 lpm's but it did nothing at all. Svenn the "Norwegian wanna be Viking" (sorry Svenn, could not help myslef again ;D), taught me how to use it properly with the increased Lpm's. As to the "spikes", as I said I have not experienced them but a very close friend of mine have them all the time. She says that they are just a reminder that "it" is still there.. Marty By the way.. I took my driving test in a 1977 Saab 99 :o |
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Title: Re: Newbie to the board, old friend of CH's... Post by Lachesis on Jan 30th, 2003, 3:25pm Thanks :D I'll look further into it, or start a new thread on the O2 as a newbie. ...just have to remember not to smoke and O2 at the same time... :o |
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Title: Re: Newbie to the board, old friend of CH's... Post by echo on Jan 30th, 2003, 3:29pm Welcome to the MB. Sorry to read that the beast located you after several years of remission. Lots of valuable information and support is available to you here. |
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Title: Re: Newbie to the board, old friend of CH's... Post by Mr.Happy on Jan 30th, 2003, 4:23pm Lash, You don't need to start a new thread on O2...... you've got all the info you need right here. Get your O2 script, get it filled at a local med supple shop, jack up the flow rate to 10-15 liters/minute, and put the non-rebreather mask over your face. Breathe in, breathe out. Repeatedly. Wouldn't get more involved than that to start......there are _SOME_ folks that get no relief from O2.....but I'm not one of them. Give it a test ride as soon as you call your doc for the script....(when you're done reading this). After you find it works and your tank is empty a few hours later, go back to the med supply shop, and get a 6 pack of the 700 liter O2 bottles. When you're ready to jump into the Industrial Strength O2 program, drop a note to Jonny for specifics. Like you, I relied on Zomig pills for the first couple of cycles, until I got fed up with the pain and started paying attention to the rest of these rednecks. O2 was definitely the biggest eye opener. Next came Imitrex nasal, which again worked unbelievable wonders in cessation of pain. Haven't had to use injectables......am sort of saving that for when things start to go Truely Awry. That took care of aborting Clusters. The next important lesson I learned from these hooligans was the Tactical Pre-emptative Strike, otherwise known as Verapamil. Worked like magic for me, too, and at the mere intake level of 80 mg 3 times daily. Within a week, the Clusters started backing down in frequency and strength. Look into a good preventative..........Verap is a decent starting point. Don't throw your Zomig away, either. That worked great for me by taking a tab before bed to avoid the Night Time Nasties....which also backed down and stopped after 10 days of Verap. As for the "spikes" you're talking about, never had `em during cycle. A quick flash of pain, followed by "What the............" and gone. Poof. They were more or less relegated to playing a part of the clean-up crew.......that Grey Period when you're wondering whether your cycle is over, or Wotan is mercilessly toying with you. Cycles end when cycles end, but when in doubt: Toss Another Virgin on the Alter.......... RJ |
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Title: Re: Newbie to the board, old friend of CH's... Post by domm on Jan 30th, 2003, 6:22pm lachesis - welcome to clusterville. Good advise above. Oxygen and triptans for abortives, Verapamil as a preventative. Pull up a chair, this could be a long one domm |
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Title: Re: Newbie to the board, old friend of CH's... Post by Lachesis on Jan 30th, 2003, 6:45pm You guys are great! ...and have a lot of time on your hands to keep replying to me ;D But your kindness is greatly appreciated (and absorbed). Touching onto parrothead's comment about crass-language use (I was suprised, too, when I first entered)... I subscribe to other boards (non-CH related) that look EXACTLY like this (same software). They complain about harsh words, and generally try to keep it very foofy ::) (aka civilized) Well in the case of this board, it seems that if you're not venting (once in a while) with harsh words to express your pain, you're not high enough on the K-scale... Parrothead, we newbies need to practice some, to keep up with these folks ;) At least I haven't seen any of the words being directed at anyone yet, so I feel comfortable. Again, thanks for the O2 hints. I'll talk to the Neuro tomorrow - need refills on Zomig, too (they only dipense 6 pills at a time - a PPO thing). Mr.Happy, Do you take Zomig before you go to bed EVERY night? :o |
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Title: Re: Newbie to the board, old friend of CH's... Post by Mr.Happy on Jan 30th, 2003, 8:37pm Nope! After going thru a couple of 50 packs of Zomig before I learned the joys of Clusterville, only needed 6 nites of Zomig in conjunction w/Verap/Trex/O2. Of course, unlike many of the really tough cases you find around here, I responded both well and quickly to the meds listed. Verap and O2 were the key for me. The rest was just an easy lesson in history. If in doubt about meds, ask Ueli. It might be hard to get a reply, but if you do, he tells Really Great Stories...... More Virgins, RJ http://www.drfeller.com/clustology/clchurch.jpg |
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Title: Re: Newbie to the board, old friend of CH's... Post by jonny on Jan 31st, 2003, 8:26pm on 01/30/03 at 13:14:11, parrothead wrote:
LMMFAO..........You passed the test, dude......LOL ;D .................................jonny :D But never forget that after 27 years chronic I hold masses of info too........LOL |
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Title: Re: Newbie to the board, old friend of CH's... Post by parrothead on Jan 31st, 2003, 9:06pm It will definately take a bit a practice, Lachesis. But, I think once we get the hang of it, we'll be able to keep up with some of these folks. And man I feel LUCKY, my HMO lets me get (9) of the Amerge at a time. Although I can only refill once every 45 days. After that I have to flip for whole bill $140.00 for 9 pills. But, the Amerge works really well for me. One of these days, I should try O2, Imitrex injections, or some of the other remedies I've heard about. Holy Crap(there I go) - so many suggestions! I think this beast must mustbe different for everybody who gets CH. -THERE IT IS! the shadows are back! Being Friday, I made the stupid decision to have beer, BAD CHOICE! talk to ya later |
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Title: Re: Newbie to the board, old friend of CH's... Post by Laurie on Feb 1st, 2003, 6:40am Lachesis, If you do stick with Zomig, try Zomig ZMT, which dissolves under the tongue. This hits a little faster than the kind of Zomig you have to swallow. It still takes about 20-25 minutes for me. Laurie |
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