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Title: old school pain medication Post by markiemark on Apr 13th, 2004, 5:47pm ok I said I was new, I know were in 2004 but this might be helpful. Im old school and I have my on belief on addiction vs suffering with our Illness. (I smoke cigs!) The pain med is stadol NS (nasal spray) ERs in california use it (injectable.."shot"ouch), along with morfine and demerol. the nasal spray is under medical protocol with M.D. for CH. Also widely used in canada for first aid kits for the outdoorsman and sporting. This info was on the (teli) T.V outdoor Ch. years ago. M.D. that I have seen stated that the Nasal spray was better than a shot. Also, some med.staff has releated the its stronger than morphine.hope this helps even one that is suffering with the pain. I know I will get in trouble from the new kids on the block but Im a "clusterhead", tuff as aligator skin (pain does strange things to the human). |
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Title: Re: old school pain medication Post by thomas on Apr 13th, 2004, 5:52pm I have never taken any pain medication for my ch, so I can't say whether they would work for me or not, I know otc stuff didn't do anything, thank God I found triptans early in my career. |
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Title: Re: old school pain medication Post by BobG on Apr 13th, 2004, 5:56pm I can't say anything about the stadol since I've never used it. About pain killers, morphine and demerol.....I think you'll find them useless against a cluster attack. Pain killer just don't work for 99% of us. You need to get some kind of preventative med such as verapimil. And an abortive med such as imitrex. You may have to search and try many befor you find the ones that work for you. Oxygen is an abortive that many, if not most, clusterheads use. Until you find the right medicine for you you might try heat or an ice pack. Try sleeping with your head elevated. |
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Title: Re: old school pain medication Post by TomM on Apr 13th, 2004, 6:04pm Well written, Bob. Mark---read what Bob wrote, again. Is that PERFECT english??? ;;D TomM |
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Title: Re: old school pain medication Post by markiemark on Apr 13th, 2004, 6:30pm respectful response! i agree with you dudes.thomas,bobg,tomm........ Im seasonal not cronic! I abort with O2, prednisone,vepramal no pain meds...see Im bad like y'aaa....but when they get out of control I go to Doc or ER for "RELIEF-RELIEF"it helps, thats what the pain meds "shots too! are for. during the attack nothing helps but our "tuff sprit" to go on another hour! If y'all go through an attack without ever needing to utilize these items maybe u should change you username to the "terminators" Its not my intent to be a smart- - - but you have misinformed me ( I hope) that 99% of clusterheads dont utilize meds for pain. Others please let me know this is not true!!! |
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Title: Re: old school pain medication Post by BobG on Apr 13th, 2004, 6:35pm on 04/13/04 at 18:30:40, markiemark wrote:
Maybe I was a little high with the 99%.......let's drop that to 80%. And you're right, we are a tough bunch. Tougher than woodpecker lips. |
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Title: Re: old school pain medication Post by Rock_Lobster on Apr 13th, 2004, 7:04pm I used Stadol NS a few cycles ago (perhaps 6 years back). It worked in the 'here... just go unconscious for a few hours' kinda way. Up until that point it did nothing for the CH pain. I still get the 'bucket of hydrocodone' with each epsisode, but it is more a 'recognition of agony' routine that my doctor and I have with our first visit of each episode... kinda like a 'welcome... looks like you are screwed for another 3 months' door prize. All painkillers are 100% ineffective for me unless they give me the near 'night night... try not to piss all over the floor' dose. My escape, .15ml-.20ml of sweet Imitrex in the arm... 1/4 to 1/3 of a vial, is 100% effective in 3-5 minutes. Just mentioning that since you did not mention triptans in your post. Have fun, Wrok |
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Title: Re: old school pain medication Post by Renee on Apr 13th, 2004, 7:07pm MarkieMark, Some appear to suffer from a CH attack for a longer period than others. Some can not seek e.r. assistance prior to the CH ending. I am one that does have a "rescue plan" in place where I ocassionally have to visit the e.r. for some pain mgmt as my CH can last up to 3 hours. I have had, in the course of my "CH career of 21 years and 8 years of it chronic" been injected with demerol, dilaudid and fentanyl. All were mixed with phenergan. The demerol could never knock the pain before knocking me out cold. The dilaudid f'ed me up SO bad I had no idea if my head hurt or not much less where the floor was but the fentanyl knocked off the edge for me AND was short lasting thus the phenergan outlasted the narcotic so i didn't wake up many hours later stumbling to get to a trash can or toilet to empty my stomach. Hang in there! Each of us deal with CH in our own ways and each CH beast seems to vary from person to person. Renee |
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Title: Re: old school pain medication Post by Linda_Howell on Apr 13th, 2004, 8:06pm Mark, (Yes, folks. You know I couldn't resist) For lack of better icons...... This is your brain during an attack. >:( This is your brain on narcotics [smiley=bomb.gif] any questions? Not only do Narcotic pain-killers NOT work for clusters, they have the nasty habit of giving rebound headaches from hell. And taken as often as we would need to take them IF they worked...then we'd also have another problem. Addiction. LindaH |
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Title: Re: old school pain medication Post by HypnoticFreddy on Apr 13th, 2004, 8:38pm My latest Neuro told me that if you absolutely need to ge to an ER, damand a Respitory oxygen team. They will give you high dosage oxygen. It is often discussed and medically shown that narcotics, including Stadol NS are not useful in the management of CHs. -Scott |
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Title: Re: old school pain medication Post by Renee on Apr 13th, 2004, 10:11pm I've never had a rebound ch from narcotics that I know of but the phenergan keeps me sleeping for 24 hours, like a baby, so I wouldn't know. I do know I wake pain free and very rested. Of course, in all fairness markiemark, I failed to mention that I suffer from more than just chronic CH and sometimes just have to get a break from the pain. An addiction here??? Not unless that addiction can withstand a fix only every few months or so except for a 2 month period in February and March of this year. Like I said, everyone suffers differently! Hang in there renee |
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Title: Re: old school pain medication Post by Cerberus on Apr 14th, 2004, 1:06am well Captain, I can't say that I have not used pain meds for the intense pain of CH. I do have to state that I tend to avoid all injectibles (immitrex) until all other options are exausted, and still those are limited to the minimal effective dosage. Like many others here I rely mostly on O2 and Verapamil to keep my cycles at bay, this technique has proven effective so far and when/ if the need arises I will search for a suitable alternative med/s. Til then....its a hard knock life. Oh yeah....stay away from the narcotics, they have done nothing but make the pain either worse or simply complacent enough to not be able to function, the intense pain remained...at least in my case. Happy hunting... Ramon |
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Title: Re: old school pain medication Post by Charlie on Apr 14th, 2004, 6:39am Never took narcotics for CH. Had Demerol during recovery after gall-bladder surgery. It was fun and worked well then. For clusters? I think all it would do is make me really stupid on top of the pain. Painkillers don't work for CH. Charlie |
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Title: Re: old school pain medication Post by Jimmy_B on Apr 14th, 2004, 7:47am Markiemark, Most narcotics are not helpful as a premiere med for CH. I have found occasional use helpful for the ones that I know are coming, i.e...I'm episodic & when in cycle I always get one an hour or two after I fall asleep. If I take one right before bed...it definitely helps. Some people have found relief with Stadol NS or Stadol Inj., however...I'm under the belief that due to its agonist & antagonist properties...generally makes you feel like CRAP. The decision to begin to use Narcotics for any type of pain is a hard one. You & your doctor must discuss all possible side effects & a proper weaning schedule when the meds are no longer needed. Most people who take narcotics for a prolonged period...(There isn't a set period. It depends on the person), may become physically dependent on the medication. The important thing to note is "this is NOT addiction" but your body becoming used to the medication. Side effects of physical dependence can include sleeplessness, irritation, diarrhea, rhinorrhea (runny nose) & stomach distress. These are more prevalent with a pure agonist narcotic like morphine & less prevalent with a mixed agonist-antagonist narcotic like Stadol. This is why your Doctor must "wean" you off of the medication, once it is no longer needed. Generally a wenaing schedule not unlike a prednisone taper is needed. A very small minority of people may become addicted. Addiction has nothing to do with physical dependence & someone can be addicted without any physical symptoms whatsoever. Addicts have an overwhelming desire to use narcotics constantly. With or without pain. They will usually horde narcotics, fake pain symptoms & forge prescriptions, and generally cheat & steal for their drug of choice. Narcotics are usually a last resort med for Clusters & other treatments must & should be used 1st. O2 & triptans, along with a good preventative should be tried. Good luck Jimmy |
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Title: Re: old school pain medication Post by thomas on Apr 14th, 2004, 9:06am on 04/13/04 at 18:30:40, markiemark wrote:
Just like I tell the my girlfriends kids, "I'm the toughest thing that walks on two legs, so don't try me." ;;D |
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Title: Re: old school pain medication Post by Bob P on Apr 14th, 2004, 9:43am A quote from Dr.s Goadsby and Matharu: "Analgesics Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH." |
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Title: Re: old school pain medication Post by Pegase on Apr 14th, 2004, 10:00am on 04/14/04 at 09:06:10, thomas wrote:
lol ;;D n1 Thomas I take nothing too... Only Verap...water...kleenex and time;-) Pegase |
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Title: Re: old school pain medication Post by Samantha_Smith on Apr 14th, 2004, 11:03am Wow! I guess I'm in that 1%. For medication I take a 100mcg Fentanyl Patch and change it every 48 hours. When I'm in the middle of a cycle I take MSIR (Morphine Sulfate Instant Relief) 15 mg about every 6 hours, prednisone, and Frova. As a "preventative" I get Botox injections every 4 months. I think that it is dangerous, unethical, and untrue for people to say that narcotics NEVER work for CH. I tried O2 and it didn't work. I tried Imitrex and it didn't work. I also tried Topamax, lithium, verap, Migranal, Lidocaine Nose Drops,etc and none of them worked. OxyContin did not work and Stadol did not work either, but Fentanyl has. Not all narcotics are made equal. I'm tired of the way people demonize narcotics on this message board. It makes me feel like I have failed....like I haven't subjected myself to enough crappy uneffective medication. It makes me feel like I just don't try hard enough. It makes me feel marginalized and demeaned. I'm tired of it. Narcotics DO work for SOME people SOME of the time. I believe that narcotics should be used as a last resort. I feel like I am at my last stop. If you are at your last stop also and your doctor has offered you narcotics to control your pain then BE INFORMED. Ask your doc about tolerance, physical dependence, possible side effects, interaction with other meds, are there other meds out there that you haven't tried, what happens when you withdraw,etc. There is a difference between addiction and physical dependence. Addiction is needing more and more, lying to get more, thinking about getting more, spending all of your time getting more, spending all of your money to get more, etc. Anyone on narcotics for any length of time (either legally or illegally) will develep a physical dependence--its a fact of life when you take narcotics. Its a possible side effect. When you develop a physical dependence you will have withdrawal symptoms when you stop the narcotic or try to lower the dose. If you are a chronic pain patient who's developed a physical dependence on prescribed narcotics does NOT necessarily mean you are a junkie who's going to rob the local 7-11 to get that next patch of Fentanyl. If you are at risk for drug addiction then discuss that with your doc and have a "contract" in place (for example-you'll only get 30 days of meds at a time, no refills, you check in once per month, etc.) Please.....be informed. Have mercy on those who are at their last resort. Have mercy on those who've tried all of the conventional treatments for CH and have had no success. Not all cluster heads are the same. Everyone has to fight their own battles and win their own wars. I don't diss people who try shrooms---I don't know what they have to live thru, I don't know how bad their pain is. |
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Title: Re: old school pain medication Post by thomas on Apr 14th, 2004, 11:05am on 04/13/04 at 17:52:42, thomas wrote:
I hope that doesn't sound demonizing to you, Samantha. |
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Title: Re: old school pain medication Post by Linda_Howell on Apr 14th, 2004, 11:59am Quote:
Samantha, Warning people of the terrible rebounds that narcotics can and do cause, and saying that, taken in the quantity that we would have to take them IF they worked would and could cause addiction....is not demonizing at all. It's a fact, and sharing information here is what we do to help one another. Narcotics have their place. After surgery like Charlie said. Acute, not chronic back pain...etc. I myself have taken Demerol and Codiene for pain. Pain that was of a few days duration, and I was grateful as hell for them. LindaH |
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Title: Re: old school pain medication Post by Karla on Apr 14th, 2004, 1:21pm I will second Samantha's post. I to have found narcotics to be helpfull. I have taken my share of them. I am also a recovering drug addict and know the difference between addiction and medical use. Never once have I ever considered abusing my pain meds. They are to precious to me to risk jeaperdising getting kicked off the program by my dr. See I have a contract I signed with my dr that says I will only get one months med at a time. If I loose my medication or it gets stolen whatever I will get no replacements for any reason. I am out of luck that month. If you are looking at taking it every day till hell freezes over( because I am chronic) who cares if you build up a tollerance to it or have physical withdrawals. I have found that demerol and morphine will not touch my ch pain. However, I have found that dilaudid works miricles and will abort the ha and give me a couple of days pain free after that. I do not get high from it or even knocked out but it does the trick. I have taken methadone for a year which kept me pain free and then I went on the 50mcg duragesic patch. Which kept me pain free another year. I have tried all the medicines for ch on the market and nothing works. Narcotics have been my answer. They are not a high. They do not put me in a place like lala land. And as far as quitting. I quit taking the patch cold turkey 4 weeks ago today and only suffered flue like symptoms for 1/2 a day and that was it. I had no problems quitting taking the medicine. And I have been on opiates for 5 years. If and when my ch returns I will go back on the patch. It has definetly had it place in treating this chronic clusterhead. |
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Title: Re: old school pain medication Post by Jimmy_B on Apr 14th, 2004, 1:37pm Samantha, You should never feel "put upon" for taking something that helps you & your pain. Just because one person does not get help and/or want to try narcotics for clusters or another moderate to severe pain (chronic and/or acute)...should not be any issue in your medications. A lot of people are wary of narcotics for a lot of different reasons. Only you feel your pain & only you & your Doctor know what will help and work. Health Professionals now have a better understanding of dependence vs. addiction and opioid therapy is now being used with less reluctance for chronic pain. Most of the old theories have been disproven and it's only getting better for the person in chronic intractable pain. Good luck & continue to use what helps... Jimmy |
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Title: Re: old school pain medication Post by Mark C on Apr 14th, 2004, 1:49pm Welcome! Cluster Headache Medications (http://www.clusterheadaches.org/medications.htm) Medications (http://www.clusterheadaches.org/library/medications/index.htm) Narcotics Are Not Usually Benefical For Nonmigrainous Headache (http://www.clusterheadaches.org/library/medications/narcotics.htm) If you like to read look here. (http://www.docguide.com/news/content.nsf/SearchResults?openform&Query=cluster%20headache%20&so=date&id=239FCA8DF4C3101685256C6D0019E3C3) Off to see the wizard, Mark |
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Title: hello from california Post by markiemark on Apr 14th, 2004, 2:17pm dear sam, i hope i can call u sam? thank u so much for your response to my post. i got a lot of flack from some folks. but i knew in my heart that there were others that suffer as u and i do! i wonder if these other people (the ones that dont take any form of pain relief )really have ch's. maybe they have like a tension h.ache, because if your like me and have this Illness...i do anything to stop the pain! thanks again sam, i hope it was ok to write u a few lines. your in my prayers!when your over with your "battle" have a cold one on me ok (pepsi!!) bye 4 now! -markus- |
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Title: Re: hello from california Post by thomas on Apr 14th, 2004, 2:35pm on 04/14/04 at 14:17:05, markiemark wrote:
Dude, you must be stoned on something to make a remark like that. Tension headache indeed, well thanks for diagnosing me, I will herebye leave and begin taking tylenol and stop wasting my money on zomig. |
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Title: Re: hello from california Post by Jimmy_B on Apr 14th, 2004, 2:44pm on 04/14/04 at 14:17:05, markiemark wrote:
I HAVE to take Narcotics because of an issue with Imitrex & O2 did not help. I thought I could understand where your 1st post was coming from...& now you state that anyone who doesn't take pain relievers must not have CH... Although...I can & do understand why someone would need Narcotics for pain...I can't understand your last post. Your saying anyone that doesn't take pain killers is a liar & they don't have CH. I hope I'm misunderstanding this quote...cause if I'm not...you sir...are a Troll. |
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Title: Re: old school pain medication Post by brain_cramps on Apr 14th, 2004, 3:07pm on 04/14/04 at 07:47:28, Jimmy_B wrote:
on 04/14/04 at 11:03:20, Samantha_Smith wrote:
Amazing how far off-base both of you actually are. In substance-abuse therapy (rehab), one of the first things taught is addiction, by definition, IS a physical tolerance or physical dependence, among other things. It is NOT the habits that a lot of people associate with the neighborhood junkie, etc... With every "substance of choice", there are "functioning addicts" and "non-functioning addicts". Not every addict steals, cheats, etc... That is one of the worst definitions I have ever heard. Below are just a few definitions of addiction. I gave up on finding even one definition that mentions lying, stealing, cheating, etc... Main Entry: ad·dic·tion Pronunciation: &-'dik-sh&n, a- Function: noun 1 : the quality or state of being addicted <addiction to reading> 2 : compulsive need for and use of a habit-forming substance (as heroin, nicotine, or alcohol) characterized by tolerance and by well-defined physiological symptoms upon withdrawal; broadly : persistent compulsive use of a substance known by the user to be harmful Addiction is a non-medical term used to describe an uncontrollable compulsion to repeat a behavior, often despite its negative consequences. A person who is addicted is known as an addict. Many drugs or behaviors can precipitate a set of medical conditions that include a craving for more of the drug or behavior, increasing tolerance of higher exposures, and pain or discomfort upon terminating... - noun: an abnormally strong craving - noun: being abnormally tolerant to and dependent on something that is psychologically or physically habit-forming (especially alcohol or narcotic drugs) noun 1. drug dependence: a state of physiological or psychological dependence on a drug liable to have a damaging effect Want more? ::) Grant |
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Title: Re: old school pain medication Post by PatFan on Apr 14th, 2004, 3:36pm Be careful, Markie..... Questioning whether the folks not taking pain meds really have CH will open up the proverbial can of worms here. You gotta remember that everyone deals with pain differently. Some take lots of meds, some don't. I know in my experiences, I have not had any success at all with pain meds/narcotics, but thats just me. But I am fortunate that I have a preventative that works and O2 also works great for me. |
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Title: Re: old school pain medication Post by Margi on Apr 14th, 2004, 3:46pm on 04/13/04 at 17:47:44, markiemark wrote:
I just have to interrupt this thread and say.... it IS? News to me....last I heard, stadol is a controlled substance (narcotic) available only with a 'script and you have to sign a form at the pharmacy whenever you are prescribed a narcotic. (LOL your statement makes it sound like anyone who goes outside or participates in sports in Canada has the option to snort up before doing so, because we've all got narcs in our first aid kits! LOL ) ok, now back to your regularly scheduled programme...thank you for your time. |
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Title: Re: old school pain medication Post by Tiannia on Apr 14th, 2004, 3:50pm Markie - I feel that you have stepped over a very bad line by making the comment that people who do not take narcotics for thier pain do not have CH. I take opiates for chronic back pain. In the state of Nevada you can not get refills for Narcotics so every month I have to go in and see the doctor to get my refills. I have been taking Oxycodine for 4 years now and only stopped while I was pregnant with my son (cold turkey btw, which the doctors did not think I could do considering I was taking 5mg 5x a day) After my son was born and I stopped nursing (or at least attempting to nurse) I went back on them. The degenerative disks and torn muscles that I have cause a constant pain that makes it almost impossible at times to move without being in pain. Also I have lost 20% or more of the movement in my back do to the injuries. Since July of 2003, when I developed CH, I (1) thought it would stop (Which I am coming up on my year anniversary with this and I keep praying everyday that I wont get one) and (2) tried taking muscle relaxers, triggerpoint injections, out patient epideral treatments on my neck and shoulders, pain killers of many types, and nothing has stopped the pain like tripans do. But that is for me. I can not speak for anyone else. For me the only thing that pain killers do is either make me not give a shit so much that I am in pain or make it so I can not function until it wears off while I am still in pain. I do not believe that my CH are as bad as others here, and there is the possiblilty that because of the pain tolerance that I have with my back has raised my over all pain tolerance as well. I dont know and I really dont care. All I know is that I would not wish this on my worst enemy and since I consider many here my friends I wish that there is anything I could do to stop their pain. Would I begrudge anyone here of finding their own way to get relief from the Beast. No. Just as each of us are attacked differently. Each of us much treat it differently. I have not tried all of the narcotics out there, and I have not tried all of the other meds that are mentioned on this board and OUCH. That again is my choice of how to move forward with my doctors to try and get a handle on this horrible disease. |
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Title: Re: old school pain medication Post by brain_cramps on Apr 14th, 2004, 3:55pm on 04/14/04 at 15:46:30, Margi wrote:
I've got them in my first-aid kit, don't you? ;) |
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Title: Re: old school pain medication Post by Margi on Apr 14th, 2004, 3:58pm Grant, shhh..... I had 'em believin me.... ;) |
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Title: Re: old school pain medication Post by thomas on Apr 14th, 2004, 3:59pm I am getting madder by the minute........... dude tension headaches................. come ON.......... wtf are you smoking, crack? I am the last person to blast a newbie, but you have gone beyond my divine patience. The hours I've spent in suicidal agony, praying for death, having all of my firearms stored at my dad's house so I wont use them when the beast comes to visit. The pain and misery I've caused my family for the last 12 years, the fuckin' pile of cash I've paid in meds and doctor bills. The countless hours I've spent here, e-mails and phone calls to fellow sufferers to help them out and somebody dares make a statement like that directed at ME.............. You have to be fucking stoned. >:( |
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Title: Re: old school pain medication Post by Tiannia on Apr 14th, 2004, 4:00pm on 04/14/04 at 15:55:38, brain_cramps wrote:
Grant - Now we have figured out why they wont let you across the border. [smiley=sgrin.gif] hehe [smiley=hug.gif] j/k -Tia |
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Title: Re: old school pain medication Post by Mac on Apr 14th, 2004, 4:02pm Maybe some people on this thread are already addicted to narcotics and are looking to justify thier use? I haven't had any success with narcotics - at least not with my Ch. By the way if your "facts" about narcotics are as reliable as your statement about Canada and Stadol then you have confirmed lack of knowledge on the subject. ::) |
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Title: Re: old school pain medication Post by PatFan on Apr 14th, 2004, 4:11pm I like your style Thomas, pretty much pissed me off too. |
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Title: Re: old school pain medication Post by HypnoticFreddy on Apr 14th, 2004, 4:11pm I think someone should be able to put a big STOP sign on this thread. It is pointless. It is aggrevating many good people. Just stop posting. Let it die. -Scott |
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Title: Re: old school pain medication Post by miapet on Apr 14th, 2004, 4:54pm Scott . . sorry, you're right . .but I can't help it. I read this thread when it first started . .and was even going to post, but thought . . .eehhhhhhhh, no point in repeating what others are saying . .. but, when I checked it again today . . .now I HAVE to post!!!! Yes, everyone deals with CH in the way(s) that works for them (hopefully, EVERYONE has a way) . . .NOT everyone takes narcotics . . .and just because they DO NOT doesn't mean they aren't CH . . .and the quickest way to get my hackles up is for ANYONE to minimize a CH (and I don't care if it's a 'normal' person, a medical professional, or anyone else). D has been chronic for 20 years (and I really think we are winning this time, here we come episodic or better?!!) . . .and he learned a long time ago that scripts (narcotic or not) and otc products just cause the rebound h/a from HELL. AND, since he's chronic, if he has a different need for pain meds (and the doc offers them) he refuses them . . if the doc won't let up, he takes the script and never fills it. I haven't been participating on this board for nearly as long as the rest of y'all . . .but I know that this has been a haven for me (and D) and that while he was in the worst cycle with in a cycle that I have seen in the past 4 years, I couldn't have made it without the words of encouragement and advice and support that I was given here. *steps down off her soapbox* miapet |
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Title: Re: old school pain medication Post by Luke63 on Apr 14th, 2004, 5:40pm It is very interesting to look at this thread and see how unique and different we all are. I think..and not for amusement purposes.....not by any means.....this is one of the most provocative threads started here in a long time. I have learned alot for this one in particular. We all deal with it differently...that's why we are who we are right? I don't know really what else to say..Im a little at loss for words right now. |
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Title: Re: old school pain medication Post by john123 on Apr 14th, 2004, 5:49pm here i am posting when I promised myself only to observe, so much for lurking :-/ opiates or synthetic opiates do NOT help me with CH at all. Probably for the same reason it is impossible for me to sleep when I have a CH, the pain deeply penetrates dreamland and is just as sharply real and painful no matter how zonked I am. If anything, opiates put me on a weak footing so I cannot attempt to deal with the pain. It's a waste of good drugs, if you ask me 8) |
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Title: Re: old school pain medication Post by john123 on Apr 14th, 2004, 5:57pm Quote:
Oops, I did not see the stop sign- not that it would have stopped me :) |
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Title: Re: old school pain medication Post by Tiannia on Apr 14th, 2004, 6:10pm on 04/14/04 at 17:57:42, john123 wrote:
No, John. I think that this thread needs to be ongoing. Because people need to see that each and every sufferer of the Beast fignts him differently. Just as O2 and Tripans do not work for everyone - Narcotics do not work for others. Or just as some chose to try shrooms, others chose to try narcotics. All are ways of dealing with the hand that life has dealt us. No matter how each of us face the beast, we are all welcome here and support as we are supported. -Tia |
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Title: Re: old school pain medication Post by jonny on Apr 14th, 2004, 6:12pm WOW!! :o Been busy running CAT5 cable downstairs so I can network in my laptop for surfing in my favorite chair with a blanky on my lap to keep me warm ;;D Well, Ive taught you all well.....If you think its a jackweed, just keep'em posting so he proves hes a jackweed.....He proved himself.....LMAO ;;D Man!!, I would give anything to see this dude say those things in the same room as Thomas [smiley=bash.gif] Grant, some real good stuff you posted, dude!! Im going downstairs and im gonna put the blanky on my lap......ON WITH THE SHOW!!! ;;D ...........................jonny |
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Title: Re: old school pain medication Post by thomas on Apr 14th, 2004, 6:13pm Well, I am going to take my "Excedrin tension headache" pill and wash it down with a beer, and celebrate the fact that I don't have ch. To think I was fooled all these years....... wonder if I can get a refund from glaxo? ;;D ;;D |
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Title: Re: old school pain medication Post by jonny on Apr 14th, 2004, 6:29pm on 04/14/04 at 16:11:36, HypnoticFreddy wrote:
Whats the matter Scott? Why should we stop? Newbies will learn from this thread that narcs are bull-shit! What other reason could you want this thread to stop? ...............................jonny |
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Title: Re: old school pain medication Post by Bob P on Apr 14th, 2004, 6:45pm Fact is narcotics work well on tension headaches but not on clusters. I think markus showed his hand. I do believe that all clusterheads should hit their doc up for a script for narcotics though (I'll be glad to reimburse them the cost when they send them to me). verap, trex, O2 = ch treatment opiates = recreation |
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Title: Re: hello from california Post by Superpain on Apr 14th, 2004, 6:47pm on 04/14/04 at 14:17:05, markiemark wrote:
You are a dumbass. And a girl thingy dumbass at that. I don't know what kind of headaches you have, but the one's I have are impervious to narcotics. I've done every drug under the sun and no narcotic is effective in killing my ch. I've gone through 50 bottles of stadol in my life, back when it was considered an effective treatment, and I can understand why you like it, but the way I see it, if stadol kills YOUR headaches... Maybe you are the one with tension headaches. ::) The funny thing is, you are most likely talking to at least 1/2 dozen people here that have headaches MUCH worse than yours. Perhaps you should avoid the stadol while posting... |
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Title: Re: old school pain medication Post by FZfan on Apr 14th, 2004, 6:55pm on 04/14/04 at 18:45:29, Bob P wrote:
8) |
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Title: Re: old school pain medication Post by Prense on Apr 14th, 2004, 6:56pm When I have maxed on imitrex for the day, and I am still getting hit and feeling completely helpless, I still hesitate in going to the ER. I hesitate because I know that they are going to give me the same shot of demeral that is not going to do anything to kill the attack. FOR ME, demeral, vicodin, fioricet w/codiene and darvocet have NEVER touched one of my attacks. That's no where near all the narcs available to try, but it is enough of a sample that I am able to say that narcs are most likely not going to do me any good for CH. Chris |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 14th, 2004, 7:05pm I can't count how many times this subject has been discussed here, maybe 10,000? It seems that Dr. Goadsby would advise against the use of narcotics, probably wise. But keep in mind in England narcotic abuse is much higher than most places and he is part of the national heath system. Having said that, before the advent of Imitrex I had no other option than the E.R. They gave me shots, 75-125mg Demerol with 25mg phenergan IM. This never failed to kill my cluster headache within five minuets. Around 350 shots over 8 years and guess what, I’m not addicted to narcotics and never had a rebound, Stadol has also helped when in a pinch (out of Imitrex). When I read people write that narcotics don't work or are not helpful at all, I can only laugh. I know better. Lee |
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Title: Re: old school pain medication Post by Luke63 on Apr 14th, 2004, 8:21pm Wow...I could use some of this heat to start my fireplace...why don't you all come to my house and keep goin. Personally..after 25yrs of this shit..I never really even knew much about narcotics. It seems alot of you...well some of you...have used....thought about using..or are using some kind. Why put yourself through it.if it in the long run could ruin your life much worse..or so you think than it is now? Always remember.....I think somewhere along the way we've been termed with "addictive" personalities...HELLO!!! Maybe that is the clue why we shouldn't be doing them at all...besides...who wants to be doped up all day when you can be hit alot and still be somewhat coherent? I forget who posted up a few(that's my brain=deadness in all of this ;;D)..to each his own....and no matter what...NO ONE here will think of them as an outcast or freak or whatever...just let our feelings be expressed...our concerns...our differences....that's why we are such an elite group!! |
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Title: Re: old school pain medication Post by stevegeebe on Apr 14th, 2004, 9:06pm Treat the headache...not the pain. I'm too weak to tempt the strong stuff. I know my limits. Steve G |
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Title: Re: old school pain medication Post by brain_cramps on Apr 14th, 2004, 9:12pm When I was first given demerol, the shots were in the 75-125 range that Lee mentioned. Within weeks, they were ineffective at more than double that amount. One night after having around 250-300, the ER doc finally said "That's enough. It seems we have a bit of a problem here. The shots I gave you should have been enough to knock out a small rhino." Over a period of a few weeks, my tolerance to demerol had risen to the point they considered me "clinically addicted". Even after the HAs were gone, I still wanted to go get that "nice, comfortable feeling" (ie. unconscious). After stopping, I was sick-as-a-dog for about 5 days. Sweating... Freezing... Sweating... Couldn't eat anything... The physical tolerance was there. The physical dependency was beginning. The withdrawal symptoms followed. Ya think that's an addiction? If not, I was well on my way. grant ::) |
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Title: Re: old school pain medication Post by HypnoticFreddy on Apr 14th, 2004, 9:18pm Yeah but Steve, if you treat the headache and it only responds to a medication derived flom a plant called opium, then what does it matter if it is weak vs. strong. The pain of a cluster headache is just unbearable. If something is strong and it magically stops a CH dead in its tracks it would have to be used unless it was toxic (well too toxic. Everything even water is toxic). If a narcotic was truly Gods gift to preventing and/or aborting CHs, we would be using them. For a good percentage of us, we would also have a physical dependance and addiction to opiates. Which probably could be managed. From my personal experience, I would have lots of trouble. Problem is. Verdict says IN MOST CASES, opiates are just not effective for CHs. Obiously, and in this thread, some people have sucess with them. I am not too argue with them. I believe them. But again, a lot of people feel euphoria from narcotics, though not at a constant dose. They are addictive and hold that danger. Maintenance is possible, and I have read a lot of Karlas postings and from what she has said, I am very impressed with her dealing with this kind of treatment. -Scott |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 15th, 2004, 12:23am Quote:
Scott, I think it all depends on the delivery system, pills in general won't do shit, other delivery systems have worked for me. Quote:
No doubt about that! ;;D Lee |
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Title: Re: old school pain medication Post by HypnoticFreddy on Apr 15th, 2004, 12:31am Agreed Lee, I see too many posts here and especially in this thread that discusses success with opiates. Just doesn't work for me, and is not a common medication. If it works for you and beats the beast than use it. I know I can't....Even if it was effective. [smiley=slowlaugh.gif] -Scott |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 15th, 2004, 12:57am Quote:
Quote:
I think thats Poppy, whatever. Now we have Imitrex, long live the King, this should make this subject irrelivant thank God. Lee |
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Title: Re: old school pain medication Post by Jimmy_B on Apr 15th, 2004, 10:05am Obviously the guy that started this thread is a TOOL...& if I knew that I would've never of responded...& I'm definitely not going to argue with true clusterheads over it. Obviously it doesn't work for the majority but for some (God, I wish triptans didn't make me feel like I'm having a coronary every time I use it)...we have no choice. Jimmy |
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Title: Re: old school pain medication Post by Tiannia on Apr 15th, 2004, 2:41pm Between my husband and myself we probably have a small pharmacy in our medicine cabinet. If we added that to the pills that my mom and dad have, hell the whole family could probably be put away for life for possession. (My father is disabled and has had both knees, both hips and half of his spine replaced. My mother has MS, has the M word, and is an utter hypocondriac that can not handle any amount of pain to boot) Yes I Have used narcotics to treat my CH, espeically when they first started and I went to the ER thinking it was just a fucking hard ass Migrain. I go the Demerol and Phenegran and it knock my assout. I woke up without the HA. WOOT!!! Life was great, until I got the next one that night. I was going to be damned if I was going to keep going to the ER. Had the docs give me pills (pain killers) to stop it and that did not work. So that is when they started me on the pill Imitrex. It stopped the HA but after 3 days and I had gone through the 6 samples she gave me and was told you cant possible take any more then that in a month it is not safe. I knew that I was going to have to figure out a way to live and function without being doped up to high heaven each time I got a HA. For the people that Tripans do not work, then I understand the need to look elsewhere to continue to live in a functioning manner. For the people who have lived without any form of medication at all for CH for 10 + years, I comend you. You all are the reason that I dont get utterly depressed everytime I feel one coming. As far as pain management goes. I can not talk about that regarding HA, but for other ailments here is the case. Pain mangement is finding a treatment that you dont get high from, but you are able to function on a high mental level without the pain. It is the people who look for the high that get addicted. Example, when I had the Radio Frecquency done on my occiptal nerve in Feb, the gall that hit the recovery room after me was a skinny tiny thing, probaby weighted 50 lbs less then me. But where all I asked for was some demerol in recovery do to the movement and such, she was asking for mulitple morphine shots because "normal pain killers just did not work on her". It is people like that wh odrive me nuts because they are the ones that make it difficult for those of us that need assistance in daily functioning. |
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Title: Re: old school pain medication Post by Kevin_M on Apr 15th, 2004, 7:57pm on 04/14/04 at 13:21:02, Karla wrote:
Well, regarding the remarks above, if you ARE working the program, you may recall these words as found in your "recovering" program. From book one, chapter one of the NA book: Who Is An Addict? Even when others told us that we had a problem, we were convinced that we were right and the world was wrong. We used this belief to justify our self-destructive behavior. We developed a point of view that enabled us to pursue our addiction without concern for our own well-being or the well-being of others. Now reread the above comments quoted. Kevin M |
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Title: Re: old school pain medication Post by Homer57 on Apr 15th, 2004, 8:51pm As a newbie, and yet a 26 year vet on the CH front, I'll say that when the beast is hammering at the door, I'll take whatever it takes to drive him away - but only if I know that I won't pay a higher price later. This is precisely why I fight with my wife each time she wants to call 911 when I reach 10 on the KIP scale. No narcotics for me. Of course I always have hope that this is it, the last one of the cycle, and that it will be at least 2 more years before the next round. Maybe if I was chronic those narcotics would look damn good! Now for my comment on the "no meds = tension headcahe" remark. When I started these, I was 20 and had absolutely no idea what I was dealing with. I took some tylenol and rode it out. I did this for a number of years, probably out of stupidity more than anything else. It wasn't until I got married and my wife got her first look at the CH scene that she dragged my ass to a doctor, who was informed enough to diagnose it correctly and send me to a nuerologist. So, can clusterheads go the no med route? Yeah, but I wouldn't recommend it now. Take what works for you, and weigh the pros and cons of what you use. Luckily for me, Imitrex and O2, with depakote, are doing the job. This cycle is ending for me (I hope!) and I wish that for all of you, no matter what you are using. Peace to all Jim |
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Title: Re: old school pain medication Post by stevegeebe on Apr 15th, 2004, 9:11pm It's a gamble. That's all. Any little caseena's in Vegas? That's how we say caseena's down here. Steve G |
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Title: Re: old school pain medication Post by Sean_C on Apr 15th, 2004, 9:25pm I think I tried Stadol Nasal spray a long long long time ago but got no results. Imitrex and O2 with Prednisone is what works for me. As for the pain meds? Your kidding yourself dude, maybe you should look into shrooms. Wishing all PFDAN Sean |
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Title: Re: old school pain medication Post by Linda_Howell on Apr 15th, 2004, 11:53pm Quote:
BINGO!!!! And the prize goes to Kevin for his insightfulness. LindaH |
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Title: Re: old school pain medication Post by Renee on Apr 16th, 2004, 2:34pm WOW!! Go to see a top-notch neuro in CT and see what I missed out on since my original postings. Y'all can bicker and belittle each other all you want and you will get nowhere except discouraging fellow ch'ers. Let's face it. CH affects every person differently thus why CH is so hard to treat. Many, like myself, can't take the veraps and trexs that so many find relief with. Many others, like myself, do not find much relief with o2. We have here an abundance of sufferers. Many episodic and many chronic. I believe the episodics can deal with CH differently than the chronics but that is just my opinion. I will say this! Whatever it takes to keep the 9mm away from your head is worth researching, especially when many other options have failed. After all, they don't call CH "suicide headaches" for no reason. May each of you find whatever resources you need to deal with this affliction in the manner that works for you. For some, including myself, that does sometimes mean resorting to narcotics. There are alot of newbies on the board right now. Let's show them support, not criticism. many pf vibes wished upon us all renee |
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Title: Re: old school pain medication Post by UN_SOLVED on Apr 17th, 2004, 1:55am Good post Renee. Can I ask what you meant by this ? [smiley=huh.gif] on 04/16/04 at 14:34:05, Renee wrote:
And I agree with this: on 04/16/04 at 14:34:05, Renee wrote:
PF Wishes Unsolved PS..Pain meds WONT work for me unless I get them delivered via IV in a big enough dose to put me to sleep. |
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Title: Re: old school pain medication Post by pubgirl on Apr 17th, 2004, 2:48am on 04/14/04 at 19:05:06, forgetfulnot wrote:
Sorry I've come in late to this, but I find this comment outrageous. You imply that Goadsby would present wrong treatment information in his CH research papers because he is working in the NHS and because he may be seen as contributing to some major problem you seem to think we have in the UK with narcotic abuse. That is so risible that it is beyond contempt. You are implying something which would not only be medically unethical, but also, if true, would destroy the reputation of one of the world's leading CH experts. Your comments also mislead people who are coming to this board seeking information about how to tackle their condition. You are talking out of your arse Lee, he and Manjit do not recommend narcotics or painkillers because for most sufferers they do not work, they can harm the sufferer and other treatments work better. They recommend the treatments which act on the mechanisms causing the pain, not attempting to numb the pain itself. Until better treatments are available, that is the best a CH sufferer can do. If you want to express your own opinion about the use of narcotics and don't want to listen to the advice of world reknowned neurologists Lee, that is your affair, but to slander them and mislead other sufferers to defend your own arguments is contemptible. Wendy |
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Title: Re: old school pain medication Post by mynm156 on Apr 17th, 2004, 3:11pm Greetings, I am new to the group but not to the suffering we all seem to share. I have notice that while we share this problem our methods of dealing with it vary as much as our grand mothers cures for a cold. I notice that some say this works and this definitely does not. While there is still much to learn about them, I think that we all can agree that CH is vascular in nature similar to that of a migraine. Sense we are all a little different not ever medication is going to work for each of us. For me I do get some relief from a combination of Stadol NS and Imatrex IM. My problem is the Drs always want to try “something new” Don’t even get me started on Topamax” What’s my point? What has worked for me may not work for you and vice versa should'nt we refrain from saying a definite one way or the other? [smiley=huh.gif] Thanks MYNM156 |
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Title: Re: old school pain medication Post by jonny on Apr 17th, 2004, 3:19pm LMAO ;;D.......Wendy puts the boots to Lee.....LMMFAO ;;D Get up Lee, you aint that hurt ;;D ..............................jonny |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 17th, 2004, 3:48pm Oh, sorry jonny, just saw this. Wendy dear, I wondered what took so long to get a response from across the pond. I get the feeling you didn't care for my post. ;;D Just exactly (not what you feel) but what I wrote is inaccurate. Believe it or not even people in your country bow to certain political views, as well as every other country on the planet. It is called human nature. God forbid anyone say keep in mind, Did you miss the part where I said probably wise? But that doesn’t make his statement one of the TEN COMMANDMENTS. Lee |
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Title: Re: old school pain medication Post by jonny on Apr 17th, 2004, 5:00pm BODY SLAM!!!!! Get up Wendy, "Quick".... Lee is rounding the bend to finish you off.....LMMFAO ;;D ................................jonny |
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Title: Re: old school pain medication Post by Renee on Apr 17th, 2004, 5:19pm unsolved, what I meant by the episodics can deal with ch differently than chronics but that is just my opinion is: if i were episodic my heart would eventually get a break from the continued triptan usage. being chronic, the multiple daily usage of triptans 7 days per week, 365 days per year over many years can lead to heart damage much quicker. a good example is thelma and louise. besides, if i knew my cycle would be over in a few months my optimism and ability to see life at the end of the tunnel (cycle) would make battling the beast easier for myself, but this is just my emotional feelings here. people ask me, how do you handle being chronic? well, sometimes I don't handle it very well, AT ALL!!! Sometimes i feel like I'm at the end of my rope and can't wake another day to the same thing, over and over again. so sorry. maybe i over-answered your question and maybe not. it has been one of those weeks. renee |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 17th, 2004, 6:44pm on 04/14/04 at 19:05:06, forgetfulnot wrote:
By the way Wendy, your quote was taken "out of context" Please re-read the entire mesage, and other follow up posts. Ding...................Round Three ;;D |
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Title: Re: old school pain medication Post by pubgirl on Apr 17th, 2004, 8:42pm Lee (and note I don't call you "dear" in that patronising fashion) Your and others opinion and experience is that they work. You have every right to express that and I am not suggesting Goadsby's views should be taken as "Ten Commandments, just that it is wrong to try and give credence to your own views by inferring that there is any hidden or "political" reason whatever why Goadsby and his team would publish something as clearly stated as: "Analgesics Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH" You don't get a more definitive statement than that. I did read your whole post, and I did read every word, but it STILL reads like you are suggesting that if Goadsby didn't work in the NHS system, he wouldn't have written it. Being "wise" doesn't come into it. He is "wise" and reports his research findings because he has probably had a hand in treating more CH patients than most doctors in the world, and knows more about the condition than most people in the world. If you had met or heard him you would realise that he is not a man to play with words for politics. He is very direct, often abrasive and frequently goes out on a limb against "the establishment" for his patients and CH sufferers in general. Prove otherwise and I will agree with you, until then, you still talk out of your arse. W By the way, the reason it took a while to enter this thread from "over the pond" is that we have been rather busy there of late, and I personally don't have time at the moment to read everything here. I mostly try and concentrate the little time I have on new people who need help. |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 17th, 2004, 10:55pm Thanks wendy, I do need help. My 23 year old son died in a horrible accident last wednesday. You and jonny have kept my mind off of it for a few ticks. Lee |
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Title: Re: old school pain medication Post by UN_SOLVED on Apr 17th, 2004, 11:13pm Thanks Renee. I know what you mean. I've been chronic myself for 4 years now. I'm getting tired. Unsolved |
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Title: Re: old school pain medication Post by john123 on Apr 17th, 2004, 11:18pm Quote:
That is a very significant loss Lee, it's actually pretty tragic. Please accepts my condolences to and I wish the best to you and your family. John |
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Title: Re: old school pain medication Post by Pegase on Apr 17th, 2004, 11:24pm on 04/17/04 at 22:55:55, forgetfulnot wrote:
... unbelievable... that is so sad :'( All my thoughts and vibes with you... That's a good thing to try to think of something else :-/ .... man... ahhh...what can i say... if you need something i'll be there. Pegase |
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Title: Re: old school pain medication Post by miapet on Apr 17th, 2004, 11:25pm Lee . . . I'm so sorry for your pain . . . you and your family are in my thoughts. *positive light and energy* miapet |
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Title: Re: old school pain medication Post by pubgirl on Apr 18th, 2004, 3:12am Shit Lee. I'm really sorry. Don't know what to say. That isn't meant to happen. No-one should have to deal with something like that. I can only send you prayers and wishes that somehow you learn how to cope with a loss like that. And do ask for help, going it alone with grief of that level is not a good idea. Prayers for you, him, and your family Wendy |
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Title: Re: old school pain medication Post by jonny on Apr 18th, 2004, 3:21am on 04/17/04 at 22:55:55, forgetfulnot wrote:
I am so sorry, Bro :'( ......................jonny |
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Title: Re: old school pain medication Post by forgetfulnot on Apr 18th, 2004, 3:59am I truly thank everyone for the kind words, and I want youall to know that it doe's help................. you all now what it meen, thanks. See Ya Around.......Lee, busted up but not broken. |
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Title: Re: old school pain medication Post by Lizzie2 on Apr 18th, 2004, 4:35am [smiley=hug.gif] [smiley=hug.gif] Lee, I am so sad for you... :'( Life is so horribly unfair at times. I'm 23...can't even imagine.... Please know my thoughts and prayers are with you. Hugz, Lizzie P.S. just one comment on the original subject of this thread....a single use of a painkiller does not cause rebound. In fact, it is generally considered safe to take pain meds no more than twice a week for acute management of pain, and rebound will not result from this. If pain meds work for you, then great...if not and you've found other methods...great too. To each his own. |
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Title: Re: old school pain medication Post by Kevin_M on Apr 18th, 2004, 8:42am Lee... Sorry Kevin M |
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