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Title: Just wanted to introduce myself Post by rwolkie on Dec 18th, 2002, 8:28pm Just wanted to take the time to introduce myself. I have debated wether or not to say anything, because i almost feel "lucky" compared to some of you. I just wanted you to know i do feel your pain, i do know what it is like. A little about myself. So far i have been lucky i guess, my attacks only come every 5 years ( im basing that on what have had) my last attack was in April of this year, and another previously 5 years ago at almost the same time of the year. May i believe it was. They generally start out small, and i hit my peak in about 4 weeks after they start. Both with me ending up crying, screaming, just wanting to die. The first attack 5 years ago, i just rode out. This last one i ended up calling my wife home from work to take me to the ER, where they put me on oxygen, and injected lord knows how much and of what drugs into me. I do have "shadow" now and then. Which is something i didnt have after the first attack 5 years ago. My "new" doctor gave me Roxicet to fend them off, so far i dont know if this works, after my last attack, the following day , i just had maybe a 3 on the kip, next day nothing at all. I did take the roxicet the day after i would say compared to the previous day when i hit my 10, it worked, but who knows? My cycle was probably over. I guess i will see next time. One thing i have had work is, the docter gave me "amitript" to take at night. I did take the time (when i have my shadows) to see if they work. I will have bouts of shadows lasting 3 days, when i dont take the amitript, they last 3 days, when i do, they last one. As far as triggers? The only thing that sticks out in my mind was my first attack was just before a vacation, and the second was just after a vacation. Thought it might have been the airplane( you know pressure and all) but the first vacation was a driving one. So scratch that, lol. Anyway, thats a little of what i have to say, wont lay it all on you now, wanted to introduce myself mainly. Believe me, i know your pain, i cant imagine living with this every day for years, i TRULY feel for those that do, and almost feel guilty for complaining about mine. I know what it is like to have those people say to you "oh i have those all the time" or "yeah i have migraines too" . I know how you feel, i know the rage you can feel especially if you are close to your peak. Hopefully i can contribute something to this topic. Peace |
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Title: Re: Just wanted to introduce myself Post by domm on Dec 18th, 2002, 8:46pm rwolkie - welcome to the board. Roxicet is acetominaphen with oxycodone - a pain killer. I used it after my back surgery. Stopped me up tighter than a cork. My guess is it won't do much for CH. Not sure what the "amitript" is, but if its a triptan, it should have some effect as an abortive. Read up - tons of info here and on the OUCH website. When you're done, you'll know more than most docs. Hope you find the right set of stuff that works for you domm |
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Title: Re: Just wanted to introduce myself Post by Charlie on Dec 18th, 2002, 8:47pm Welcome to our little corner. I'm 56 and I've been in remission since 1991. I was dumbfounded to find so many who know exactly what this thing was like. Don't plan on them returning. The time will come when they wont. If you stick around, read and try some of the odd-sounding options, you will find things to mitigate your attacks and manage this horror. Keep up the good fight, Charlie |
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Title: Re: Just wanted to introduce myself Post by laraleigh on Dec 18th, 2002, 9:41pm Now i am going to sound really ignorant - but what are the "shadows"....this is all fairly new to me and I havent quite attributed the lingo to the pain yet... |
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Title: Re: Just wanted to introduce myself Post by firebrix on Dec 19th, 2002, 1:25am laraleigh, greetings! Mopar says that a shadow is a headache that doesn't quite break through - a shadow of a headache, kinda like a non-alcohol beer! Its beer, but not really. Shadows are headaches that you can feel, but are not debilitating, and require no meds. Hope that answers your question. firebrix |
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Title: Re: Just wanted to introduce myself Post by deerene on Dec 19th, 2002, 1:59am I'm a newby here too. Hope you don't mind. I am hoping now that I have found you guys, maybe I can get some answers from my doc. Up until now I've just been told that I have migraines or "a really bad headache" I had never heard of this before. I'm glad you explained what shadows were cuz I was afraid I still was having something different cuz' my head never completely clears. Can I ask rwolkie what dose of amitriptyline your doctor gives you? I have the 10mg tabs and they don't do anything but give me nightmares. So if I don't waake up from the pain I wake up from crying in my sleep. Any info anyone has is greatly appreciated. Thanks. ??? |
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Title: Re: Just wanted to introduce myself Post by tanner on Dec 19th, 2002, 2:19am hey you guy,s What are you doing up at this time of night? i hope its not the same reason i am. but seriously firebrix ,what time is it in N.Z.? my dad was there during ww2 and before he died he told me if i never get anywhere else, get there! i got as close as australia on r&r from vietnam but they didn't offer New Zealand so it's still on my list. and deerene, its nice to meet you and welcome. i am a chronic (day580 something) this time and my head never clears either. i think firebrix's explanation is a good one but my shadows don't often go below a 3 on the kip scale and have the added bonus of muddling my thinking and producing dyslexic type symptoms. takes me forever to type a post! anyway welcome aboard and GO TO SLEEP, SWEET DREAMS, and NO HEADACHES!!! btw, firebrix hows our post op patient doin? tim |
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Title: Re: Just wanted to introduce myself Post by suzy617 on Dec 19th, 2002, 6:23am Welcome Rwolkie. Never feel guilty because you are lucky enough to have 5 year remissions. We are here to listen, vent,and help each other out. Glad you found us, now go to bed! suzy |
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Title: Re: Just wanted to introduce myself Post by Bob P on Dec 19th, 2002, 9:12am Amitriptyline inhibits the membrane pump mechanism responsible for uptake of norepinephrine and serotonin in adrenergic and serotonergic neurons. I tried it once. 50mg first night. Was super groggy the next morning so went to 25mg. Still groggy so quit taking it. Some have had success with it though. |
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Title: Re: Just wanted to introduce myself Post by Mr.Happy on Dec 19th, 2002, 9:38am WOW! You're really good with the medical terminology. Wish I could pronounce that stuff, let alone remember it. How about a match off: Bob P - "The Cal Pal" vs. Obiwan KaUeli - "The Swiss Chard" No words under seven letters. :) Where's the PDR????? I'm not able to use big words, especially since Diminuitives suffice, RJ |
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Title: Re: Just wanted to introduce myself Post by Bob P on Dec 19th, 2002, 10:34am Shit Hap, I dint say that shit. I cut-n-pasted it. |
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Title: Re: Just wanted to introduce myself Post by OneEyeBlind on Dec 19th, 2002, 11:23am Welcome to the board Rwolkie & Deerene !!! And BobP ... man you cut and paste better than anyone I know ! You also search and destroy with your search engine. It's amazing you haven't burnt that thing out !!! |
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Title: Re: Just wanted to introduce myself Post by Mark C on Dec 19th, 2002, 11:47am Quite a good first post, you must have read the Welcome Page. ;D on 12/18/02 at 20:47:51, Charlie wrote:
on 12/18/02 at 21:41:01, laraleigh wrote:
Good question laraleigh, for me a "shadow" or "ghost" are the foothills to the mountain of pain. When I am not in cycle I do not have shadows. Before a cycle begins the shadows may start a month before. When I get that fiirst shadow I know I am heading for the mountain top. It may taka a while to get there, but I always do. I can't really say I am out of cycle yet even though my last HA was about 6 weeks ago I have continued to shadow since then. As long as the shadows continue I may blast to the mountain top at any time. This pattern has devloped over the last 25+ years or so we are old friends. Hi Randy on 12/19/02 at 10:34:19, Bob P wrote:
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Title: Re: Just wanted to introduce myself Post by Drk^Angel on Dec 19th, 2002, 2:00pm Welcome to the board! Sorry that the beast is whipping you cranium into mush with his whip made of fire and pain. Good luck! PFDAN............................... Drk^Angel |
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Title: Re: Just wanted to introduce myself Post by rwolkie on Dec 19th, 2002, 2:23pm Deerene, He has me on 50mg amitript, one per night. Like i said all i can say about it is, i have taken the time to see if it works for me. If i have shadows, i take amitript the first night, i have no more for a few weeks. If i dont, i have them for 3 days or so. So i "guess" it works. I know that roxicet is basically glorified acetometophen ( i stake no claim that is spelled correctly). So i seriously doubt it will work, before i got it. I was taking the over the counter aceto, 1000 mg at a time, and it didnt do jack sh**. I think my last cycle was just over when i got these, so i have nothing to base an opinion on. They are killer shit for backaches though! I cant remember who asked about shadows, but for me, if i drew a line from my temple to inside my head, and another line from my eye (same side) to inside my head, where those two meet , that spot, there is a dull aching kind of feeling where the clusters originate when they get going good, i have never had shadows over a kip3. Thats the best way i can descibe the "shadows". As far as the headaches go, its kind of like shoving a hot needle in your eye, icepick through the temple, and earache, and you got punched in the back part of the head , all at the same time. I thank you all for welcoming me, feel free to ask me any questions , if i can help anyone, i'd be more than happy to, even if you just want to talk. P.S. for those of you that have been to the E.R. you know that stupid fuc*** chart they have on the wall ? They come in every 5 f'n seconds and ask you, "ok based on that chart how do you feel"? Ever seen that one? Ever want to just tell them to stick that thing in their a**, and say "this isnt on your stupid chart". ???? lol Oh ya, and those receptionists who say during your peak, "oh ya, i had one of those today" and smiling about it? Wouldnt you like to just reach across that counter and rip their tongue out?? I think i answered all questions directed to me, and vented some more, let me know if i missed anything. Peace to you all. |
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Title: Re: Just wanted to introduce myself Post by cathy on Dec 19th, 2002, 2:52pm :) :) Rwolkie....welcome to the site, sorry you've had to find us.... :( Amitriptyline....as its called in Uk :D BRAND NAMES: Domical, Elavil, Lentizol, Tryptizol Used in the following combined preparations: Limbitrol, Triptafen This is a drug that is used in the UK for the treatment of CH, partly as they have found it to be helpful as a preventative and as it is an anti-depressant..... Amitriptyline belongs to a class of antidepressant drugs known as the tricyclics, it is more sedating than similar drugs. INTERACTIONS Sedatives Monoamine oxidase inhibitors (MAOis) Antihypertensive drugs Barbiturates Some background info about Amitriptylene.... As far as im aware....correct me if im wrong....Amitriptylene when used for CH takes from 4 weeks to 3 months to get properly in the system and although it will help you sleep if you take one.....providing the beast isn't about he don't sleep for noone..... it will not be effective for CH long term you need to take it regularly for at least 4 weeks. Side effects are: Dry mouth Apathy / Tiredness Nightmares Mood Swings Hope this is of some use, hope I've not got anything incorrect here... :D Good luck Cathy :) :) |
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Title: Re: Just wanted to introduce myself Post by cerebus on Dec 21st, 2002, 1:52pm lets see here..... what was it that pinhead said in the movie "hellraiser"....oh yeah! "Welcome to Hell" Sorry you have to experience the pain of CH, but, glad you found this site. It saved what is left of my sanity, and the people who reside here are the best in the world. Amitryptilene was a no-go for me, made me too tired to function, oh yeah, I slept, but, the next day I was worthless. I could only stand two doses before stoppage. If it works for you, then keep taking it, by all means. There is alot of info here if/when you need it on every level, use it to your benefit. Welcome, Cerebus |
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Title: Re: Just wanted to introduce myself Post by Slydog on Dec 21st, 2002, 7:13pm Deerene, I also take Amatrirptilyne 10 mg as a preventive. So far have not had nightmares from it.(taken it since Aug.) Also use Imitrex Pills as an abortive. Have only had to do that twice during this cycle. (From Aug till now). Sly |
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Title: Re: Just wanted to introduce myself Post by SommelierCH on Dec 22nd, 2002, 7:00am A warm Hidyho, to all you new kids, Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in. What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets, NOT the regular kind which take too long to work) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in, that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks. The cumulative amount of knowledge residing within these people on the board, is amazing. Good luck, David J. |
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