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Title: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 10:45am Good morning Friends, I would like to solicit your opinion on the above subject and would be most appreciative of your responses. I am rapidly coming to the conclusion that my new friends and fellow sufferers are more knowledgeable than most if not all of the doctors I have seen in my 20 year bout. Guess you gotta live it to know it. Here it is: As I mentioned, just started a cycle after close to 2 PF years. Am not taking any meds. Ergostats, prednisone, etc, havent done jack for me in the past. Im not even sure Verap has. Sometimes yes sometimes no. As I said in another thread, have had some success with Verap and Timed released Naproxen, but not every time. So far I have been lucky in that I am not getting hits at work, so I can deal with it in the house. Hits come around bed time, and O2 has knocked it out. I either get thru the night until around 6 ish (sunrise) and get woken up and breathe or a few nights its the 2 am, 4 am 6 am multi hits, breathe and knock it out. My question is this: Do you believe that the breaking of a cycle and HA free period resulting (please G-d for another couple years) will happen when it happens regardless of whether you are on meds during cycle (to control HA), or do you believe that by taking meds it will assist in breaking cycle sooner. Another issue in question, is, do you believe that the more the vein (by the way, I am a leftie...I get hit on my left side...although several describe as behind the eye, I describe as in my left temple, and can feel that vein constricting and inflammed, etc...), again, the more trauma to the vein (high level Kips) the harder it is to break cycle because the affected area cannot normalize. If so, take into account in my first question that O2 has knocked out so far before High Kip pain, so even though I am on no meds, I have avoided significant trauma to left side. Sorry about the length and thanks for reading. I look forward to your thoughts friends. Jeff |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 19th, 2005, 11:19am Jeff, Clusters don't happen because of an inflamed or traumatized vein. It is currently believed that clusters originate from a small bundle of extra nerve tissue on the back of the hypothalamus. That little bundle of nerves is activated by something (this is the "we're not sure what causes them" thingy). This activation of the hypothalamus causes a whiole cascaed of things to happen. Substance P is released causing us to be more sensitive to pain. CGRP is released also causing pain sensitivity. Serotonin levels change, blood vessels expand, the trigeminal nerve is irritated and since we are now more sensitive to pain, it hurts like a mo-fo. Clusters have nothing to do with any veins being traumatized. We take drugs to constrict the blood vessels so they don't irritate the trigeminal nerve, to stop the release of CGRP and substance P. We take anti-epileptics like Topomax to stop the little bundle of hypothalamus nerves from activating and causing the cluster cascade. When I was younger my cluster cycles lasted 4-6 weeks. Now they last 8-16 weeks. When I was younger the remission times were 8-9 months. Now they are 3+ years. I have always taken cafergot for attacks. ONly recently added verapamil and O2. So, are cycles shorter if you don't take drugs? Heck if I know! If I have an attack coming on and I have something that will stop it, am I going to take it? You can bet your sweet patootie I am! |
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Title: Re: Please respond RE:No Meds Strategy Post by vig on May 19th, 2005, 11:35am MY experience was that the condition (CH) advanced more during my 2 years of a 'No Meds Strategy'. (It wasn't by choice) I still believe in a 'Minimal Meds Strategy', so be careful. |
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Title: Re: Please respond RE:No Meds Strategy Post by Kim Y. on May 19th, 2005, 11:53am Natural is the route that I would like to work on. Starting vit. I tried Kudzu (not much success for me but others have). Hate the Imitrex but will take if I have to. O2 is also a resort I turn to to abort. This is all I am on for now. Kim |
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Title: Re: Please respond RE:No Meds Strategy Post by Pinkfloyd on May 19th, 2005, 11:54am on 05/19/05 at 11:19:30, Bob P wrote:
on 05/19/05 at 11:19:30, Bob P wrote:
Seems like if you take expanding blood vessels out of the equation.....clusters wouldn't hurt. So, they must have "something" to do with clusters according to you....or not, I guess. Jeff, I have always been a believer in the notion that pain promotes more pain. Pain will weaken your entire system. Traumatizing both your physical and mental states. Do the blood vessels get weakened a bit from all that expanding and contracting like a old balloon? Is it then easier to expand and cause more irritation to the trigeminal, giving higher levels of pain to an already overly sensitive nervous system? Would it help in the long run, even slightly, if you stop some of the expansion/contraction activity? I think it might. Why do doctors often prescribe medications that help control blood vessel expansion to help with clusters? hmmm. Do some medications prolong cycles? Who knows. This is a weird disease. Cycle and attack lengths often change for no good (understandable) reason. There have been more and more clinical studies coming out that lead us to believe that some of them DO increase the lengths of cycles. This after years of being told they don't. Bobw |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 12:06pm Bobw (Pink Floyd) Thanks for the response. I definitely "visualize" and try and make sense of whats happening inside me in the same manner as you and appreciate your response. Although I appreciate BobP taking time to respond, I dont process that kind of information, in a how to beat this or ease this way. ALthough its cerebral (pardon the pun) it is contradictory to everything every neuro and pain mgmt specialist has ever taught me. I am an ABSOLUTE believer that the vein in my left temple constricts and then explodes and that regulation of that helps the HA's. I can fell the vein in my left temple all blown up, expanded and pulsating before I breathe o2 and after, when I touch my temple it is gone. I too believe like Pink F. that pain brings pain and that the constant constriction and inflammation is traumatizing and exacerbates and extends a cycle. I'm sure that attempting to visually diagnose and understand what is happening neurologically, physiologically and from a circulatory perspective is impossible, so the cerebral, although perhaps accurate is non-processable to me. Admission sucks.... "Oh by the way, which one's Bobw?" |
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Title: Re: Please respond RE:No Meds Strategy Post by SteCo on May 19th, 2005, 12:35pm Quote:
Does this nerve also extend down the side of the neck? SteCo |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 12:37pm For me steve, it extends from my temple, back behind my ear, down the down my neck on that path and in to my shoulder blade. |
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Title: Re: Please respond RE:No Meds Strategy Post by seasonalboomer on May 19th, 2005, 12:48pm I lean toward the no-meds strategy and, to date, have not used any prescriptive med -- not even o2. But, for the first time, this February/March I gave the Kudzu a try. Having actually felt something make a difference for me I am inclined to now agree with BobP, inasmuch as relief sure beats the hell out of "gutting" it out. So, my plan is this summer to get my o2 in place, have my Kudzu vial ready and wait for the beast to come a knockin' in the Fall. After years of waiting for the dark days of beastie battles the kudzu experience at least gave me the feeling that you don't have to fight it with your hands tied behind your back. My 2 cents for what its worth.... |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 1:06pm Boomer, Thanks for the reply. My friend....PLEAAAASSSSEEEE go get an O2 tank. Im not sure if what you get is what I got, but "gutting it out" is a total impossibility for what I get. I can only describe the pain as the sickest most intensely penetrating, wanna jump off a tall building kinda pain. Were it not for O2 which almost always gives full relief, I dont know where I would be. I have never tried Kudzu..just learned of it as I have been HA free for 2 years and superstition keeps me away from related sites. Anyway...Dont wait til fall my friend. Go get a tank now and I promise, if please G-d it works for you, you will wonder how you lived without it.... Jeff |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 19th, 2005, 1:29pm Hello you buffoons! I didn't say the blood vessels weren't involved. I said clusters weren't caused by a traumatized vein. Why do neuros give us vaso-constrictors? So the expanded blood vessels will contract and stop putting pressure on the irritated trigeminal nerve. You drink a beer or go for a run and your face gets flushed because the blood vessels are expanded. Are they traumatized? Hell no. They're made to expand and contract according to the Oxygen needs of what they are feeding. There are some here who believe that the pain is good because it tells your body/brain that something is wrong and prompts it to heal, thus shortening the cluster cycle. Dr. Robinson, at the Vancouver OUCH Convention, explained the pain in neck (some even develope a lump) as the terminus of the trigeminal nerve. Yep Jeff, it extends over the ear, and down the back of the neck. So how do you stop the pain? 1.) Stop the blood vessels from expanding so they don't irritate the trigeminal nerve. 2.) Stop the release of substance P and CGRP so the trigeminal nerve isn't so sensitive. 3.) Stop the hypothalamus from statring the whole thing. 4.) Take enough narcotics so you can't feel a thing. 5.) You could say take an alternate treatment but chances are it does one of the things listed in 1-3 so that would be redundant. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 1:56pm BobP, We are apparently on two diametrically opposite views of what happens with this affliction. You keep referring to the meds as vaso-constrictors, in other words the vein is inflammed (dilated) and the constrictor reduces it. I am of the opposite opinion and education. See link below. Verap is a vasodilator. In other words, quite the contrary, Ihave been educated to belieive that the vein first constricts (tightens and gets smaller) and by taking Verap or other Vasodilators you reduce constriction..and allow blood flow. We seem to be talking opposites. Cut and paste: http://lysine.pharm.utah.edu/netpharm/netpharm_00/druglist/verapamil.htm |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 19th, 2005, 2:12pm cafergot - vasoconstrictor Imitrex - vasoconstrictor all the triptans - vasoconstrictors alcohol - vaso dialator verapamil - does it work because it blocks the calcium channels in the smooth muscle surrounding the blood vessels, relaxing the muscle and allowing the blood vessels to expand or does it work because it effects calcium neuro receptors? If it's the later, does that effect the release of CGRP? Does verap even do anything to the cranial blood vessels? Your link mentions coronary and peripheral blood vessels. |
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Title: Re: Please respond RE:No Meds Strategy Post by Jonny on May 19th, 2005, 3:01pm on 05/19/05 at 12:35:22, SteCo wrote:
Its the orange one that turns yellow as it hits the jaws http://im1.shutterfly.com/procserv/47b3db29b3127cce9fbec057efc300000016108AZM2bNk5bM6 Not sure if it goes to the neck |
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Title: Re: Please respond RE:No Meds Strategy Post by Margi on May 19th, 2005, 3:18pm on 05/19/05 at 15:01:54, Jonny wrote:
It doesn't, Jonny. You're absolutely right. The trigeminal nerve is facial. Ear and neck pain are something separate. Jefferator, I think you're on the wrong track here. BobP is the one who compiled our library and is among a very learned group of sufferers here who really HAVE spent a lot more time studying this affliction than most doctors. We have one single focus here: cluster headache. Doctors have to be diversified and they just can't spend the time we do, researching - not even the neuros. We don't deal with migraine, tension or any other kind of headache here at all like they have to. There are hundreds of years of combined research here and, sadly, WAY too many field trials to prove out the different theories that have been presented to us by medical professionals. Surprise, surprise, the doctors aren't always right. So, you see, we really do know what we're talking about here. The abortive meds ARE vasoconstrictors. Verapamil is a calcium channel blocker. Completely different family of meds that do completely different jobs. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 3:50pm Gotcha, and understand fully, but I believe that the vein constricts first and then explodes., so a vasoconstrictor would be causal. My neuros and 2-3 headache specialists I have visited (Swerdlow, a renowned guy in cluster headache field, and another that I flew to see in Long Island New York) have explained to me that in order to treat CH's, you have to blend a vasodilator (Verapamil) with an anti-inflammatory (Indomethacin, or timed release Naprox, etcc). This, in effect, regulates the vessel and Ying/Yangs it...in otherwords, the dilator avoids the constriction (Picture your fist closing tightly) and the anti-inflammatory avoids the explosion/inflammation (Picture that close fist opening). I know when I feel the onset, it is a hard tightening feeling in my left temple, and when it goes high Kip, I can feel that vein all blown up.....you guys know...we Clusterheads put our fingers up to our eyes or temples and loved ones see us and say..."Are you getting one". |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 19th, 2005, 3:55pm Pathophysiology: The pathophysiology of cluster headaches is not well understood. Some proposed mechanisms are described here. Hemodynamic: Vascular dilatation may play a role, but blood flow studies are inconsistent. Extracranial blood flow (hyperthermia and increased temporal artery blood flow) increases but following the onset of pain. Vascular change is considered secondary to primary neuronal discharge. Trigeminal nerve: The trigeminal nerve may be responsible for neuronal discharge causing cluster headaches. Substance P neurons carry sensory and motor impulses in the maxillary and ophthalmic divisions of the nerve. These connect with the sphenopalatine ganglion and interior carotid perivascular sympathetic plexus. Somatostatin inhibits substance P and reduces the duration and intensity of cluster headaches. Autonomic nervous system: Sympathetic (eg, Horner syndrome, forehead sweating) and parasympathetic (eg, lacrimation, rhinorrhea, nasal congestion) effects occur. Circadian rhythm: Cluster headaches often recur at the same time every day, suggesting that the hypothalamus, which controls circadian rhythms, may be the site of activation. Serotonin: This is not as striking as in migraines but some changes are seen. Histamine: Although evidence supporting a causative role is inconsistent, cluster headaches may be precipitated with small amounts of histamine. Antihistamines do not abort cluster headaches. Mast cells: Increased numbers of mast cells have been found in the skin of painful areas of some patients, but this finding is inconsistent. |
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Title: Re: Please respond RE:No Meds Strategy Post by Margi on May 19th, 2005, 4:09pm on 05/19/05 at 15:50:29, jefferator wrote:
Then why are triptans (vasoconstrictors) the first line of defense prescribed for aborting the attacks, Jeff? Think about it. That theory simply doesn't make sense. on 05/19/05 at 15:50:29, jefferator wrote:
Sorry, but wrong again. Indo is used to treat CPH (Chronic Paroxysmal Hemicrania) NOT cluster, and anti-inflams don't do squat for cluster. Verapamil is a preventative, not an abortive as are the vasoconstrictors. It is thought that by building up the calcium channel blocking properties in the system, this will regulate the seratonin imbalance and prevent attacks. That's why you have to take verap for a while before you feel any effect from it. If you're aborting your attacks from taking verapmil, it's the verapamil that you took last week that's helping, not the one you took today. Read what BobP's writing to you here, Jeff - he really is explaining it well and trying to help you understand that you're getting things backwards. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 4:10pm Bobby the P, THanks amigo. Not sure on the Verap question. I just posted that link due to the vasodilator language, although in all my reading on this site, it appears Verapamil is the drug of choice. I apologize for any contradictory language...I just find it hard to believe that these two docs could say the same thing and not have some validity. I appreciate all that data, as I continue to study and learn. Now, I'll shut the hell up before I do the exact opposite of the purpose of this board, and give someone a headache. Thanks friends. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 19th, 2005, 4:18pm Marg...Thanks for the post, and I have read them well. I am afraid we'll have to agree to disagree on this one. Whether you believe so or not, and I have read all the posts and research, I believe that "regulation" of the vein right there in the temple and eye region controls and prevents CH's, if responsive. The notion of vasal constriction and anti-inflammation are quite similar. They both shrink that which is inflammed, dilated, blown up, traumatized, throbbing...etc...I also believe after much research and traveling the country seeing pain management specialists that the initial onset is a CONSTRICTION of the vessel requiring dilation, not the opposite requiring constriction. 20 years of research has directed me here...maybe Im just old fashioned and cant let go of this theory, but it translates into what I am feeling. |
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Title: Re: Please respond RE:No Meds Strategy Post by SteCo on May 19th, 2005, 4:36pm Quote:
Quote:
Quote:
Man is that statement ever true LOL Thank you Jonny and Margi! Okay.. This leads to another question...when I start putting my hand over my eye and rubbing my temple....Then right after that I move my hand to my neck (at this point I know I am screwed and a hit follows almost immediately). What am I attempting to rub? maybe another nerve or muscles tightening up or ??? SteCo |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 19th, 2005, 4:48pm Not sure on this one SteCo although I get the same thing. My neck, near where you would feel for a carotid pulse is sore at times. During a cycle the over the ear and down the back corner of the neck is always sore. Not sure if it's vascular, nerve or muscle. |
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Title: Re: Please respond RE:No Meds Strategy Post by Jonny on May 19th, 2005, 5:13pm With bad hits im moving that ice bag like it didnt have a home, forehead, eye, cheeck, back of neck, side of neck and the top of my head. All the while turning and bending my neck to try and find any reliefe....dont know why...but I do it. |
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Title: Re: Please respond RE:No Meds Strategy Post by jokrs2 on May 19th, 2005, 10:39pm Hi Jeff. How about trying a few Hawaiian Baby Woodrose seeds and busting "completely" out of clusters and shadows. I was chronic for over 20 years...The opioids caused addiction and rebound headaches and the triptans (vasoconstrictors), coffee (too much) also can cause the rebound. Been completely pain free for 6 weeks now and also got Restless Leg Syndrome under control with LSA, and that is all I take now. Small cup of tea every couple of weeks and NO worries. I guess what I'm saying is there are some answers out there...at least there was for this guy. Best wishes, Joe ps BobW and Pink Floyd are 1 in the same and a great guy ;). |
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Title: Re: Please respond RE:No Meds Strategy Post by Pinkfloyd on May 20th, 2005, 12:32am on 05/19/05 at 16:09:10, Margi wrote:
Maybe Bobp would like to explain to Jeff which very potent anti-inflammatory is often used for clusters and why it's used if it doesn't do squat? I would but margi doesn't think the rest of us are worth reading :'( Sorry Margi, couldn't resist. I have a sneaking feeling that Jeff's docs are prescribing less effective anti-inflammatories because they are trying to avoid the use of the ones that many times cause more problems than they solve. Sounds like a safety issue move and one to hopefully help a little and to buy time until the cycle ends on it's own, IMHO. I think most of us have been tossed out of an office at one time or another with a couple of scripts that the docs know won't do squat but it does get us out of the office for another 30 days. Sent home to suffer out of earshot of the doctor. Today at 10:19am, Bob P wrote: Clusters have nothing to do with any veins being traumatized. I know you never said traumatized veins "cause" clusters. Don't put words in this buffoons mouth. All I did was quote the words you DID use. I agree....they are not the root "cause" of clusters. If "simply" (as in singularly treating) the involved connection between the traumatized vascular system and the hypersensitive neurological system is not medically considered a treatment for clusters, why do people put their lives on the line for Microvascular Decompression? BTW Margi, Congrats. :) Bobw P.S....are Buffoons those big monkeys with the pink butts? ;) |
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Title: Re: Please respond RE:No Meds Strategy Post by Flash on May 20th, 2005, 4:52am BobP - you are doing EXACTLY what you accuse the Clusterbusters of doing. Spouting a huge dose of information presented as factual when in fact a lot of it is hypothesis. To the best of my knowledge Jefferator is cprrect in that the blood vessels do constrict before they dilate. I read that as far back as 1991. Jefferator - personally I believe than a no meds strategy is much more effective than anything bar hallucinogenics. I also believe that meds will prolong an episode, cause more hits, and cause more painful hits. And I consider it likely that meds do work to turn people chronic. Please note that OTC analgesic meds such as aspirin, paracetomal, ibuprufen, are among the biggest culprits for making things much worse. I suspect that if people made a comparison chart, by totalling all their kip scores daily then they'd find that no meds equates to an easier ride. Those already on meds would probably find that things initially get worse for the first week of detoxing then improve a lot. |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 20th, 2005, 7:17am Quote:
Maybe you guys have meegraines. Actually, this notion that migraine is caused by a contraction followed by dialation of the blood vessels is an old one, circa 1930's. New research contends that migraine, like clusters, originates in the neurologic realm and the action of the blood vessels is secondary. Quote:
I can only guess Floyd is speaking of indocin. A strong NSAID. It is, however, not an accepted treatment for clusters. It is prescribed for CPH. I tend to go with Prof. Goadsby when he says: Quote:
Quote:
Because they are suckers for Ali's spamming of this message board? |
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Title: Re: Please respond RE:No Meds Strategy Post by Margi on May 20th, 2005, 10:13am just to clarify for Pinkfloyd, I was talking about Aleve (Naproxen - the anti-inflam that Jeff has in prescription strength) or the other OTC anti-inflams like, um, Ibuprophen. Maybe they help your head pain but they sure don't help Mike's clusters. ::) ANYWAY, Jeff's original question: Do you believe that the breaking of a cycle and HA free period resulting (please G-d for another couple years) will happen when it happens regardless of whether you are on meds during cycle (to control HA), or do you believe that by taking meds it will assist in breaking cycle sooner. It has been our experience that when my husband takes cluster treatments of any kind, natural or prescribed, his cycles last longer. He was unmedicated for 20 some years and his cycles were much shorter. So I'd have to say that no, taking meds do not assist in breaking the cycle sooner, in fact just the opposite. Also, vasoconstrictors appear to spawn more attacks for Mike, even though they do act quickly to abort. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 20th, 2005, 4:05pm Hey Hey Hey (said in my best Fat Albert voice!). sorry no reply. Had one hell of a shitty night. Hits at 12:30, 3, 4:30, 6 and 7. Thank goodness easy aborts with O2, but one or two were really really hard...you know the drill, think you are having a nightmare, so exhausted you dont realize whats really happening and then struggle with, take the pain cause Im too tired to get up, or get up and breathe... Lucky in other ways though. Got the cutest little just turned 3 year old boy who kisses my left temple in a "Daddy, you have a boo-boo?" Yes son. Ohhhh, I kiss it and make it better! Makes it all tolerable...OK, Gotta Start with Flash: Absolutely great post. I cant tell you how much I appreciate the super content and feedback. Thanks you obviously reading all of the posts and extrapolating thru to the issue. Also, understand the analgesic Nsaid comments, but this doc I used to go to in Orlando was a very bright guy, dedicated only to pain management/headache mgmt (6 months to get appt). He was the one who educated me on lack of response and rebounding effect and many others. He also said that I would get this response from other clusterheads, but swears by cocktailing Verap with ONLY a timed release heavy anti inflammatory (Timed released avoiding the surge of medicine cause your last dose wore off, and thus avoiding the rebound. ) I can read 1 or 100 posts contrary, and know it works. I am sticking to the no med strategy on this and hope it knocks out soon (and remains nocturnal so I can work) Be coo brutha, and thanks again. Bobby the P, No offense mi amigo, but after 20 years, Im pretty sure I know what I have. Although I will say this...I think virtually every clusterhead is part migraine. I know that of the half dozen specialists I have seen, two or more have said I am a cluster migraine hybrid, but much more cluster...obviously Imitrex is a migraine treatment and so many CHeads take it, so its totally hypocritical to continually quote that certain drugs have no place in cluster HA treatment, when 50+% are taking a migraine drug and getting relief. I get: 1. One sided pain-left temple 2. Episodic with 6 month to 2 year temp remission 3. Ipsilateral lacrimation 4. Stuffy nose 5. O2 relief 6. Need I go further, BUT 7. I see no dots or aura 8. I get no nausea 9. I am HIGHLY photo sensitive-the freagin blinking 12:00 light on the VCR, in otherwise pitch black room with my hands over my eyes is like a dagger during high Kip hits 10. Highly audio sensitive Several CHeads Ihave interacted with have high Cluster symptoms with Migraine tendencies Marg-Hi dear. Regarding anti-inflamms...if it aint high dose, and timed release...I have no doubt they didnt do jack, and like every other med...works for some and not for others. If there is one rule I have deciphered in 20 years, its that there are no rules when it comes to CH's Thanks for circling back to the original reason for the chain.....I have to agree, as did Flash and others...meds seem to make cycle more tolerable but perpetuate cycle. I'd rather have John Daly bang me in the head real hard for 2-4 weeks, than have Dottie Pepper ping me less for 6-8...lets just get 'er over with and hopefully not deal with it for a year or 2....Hey guys...Im 43...anyone care to start a chat about that oft spoken about..."just goes away over 40 for some??" any examples. Thanks friends...Jeff |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 20th, 2005, 4:21pm Quote:
Actually Jeff, if you read the product info for Imitrex you will see that it is the only triptan that is officially tested and approved for cluster treatment. |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 20th, 2005, 4:28pm Retrospectively...I would market it that way too...sure its not treating that Migraine hybrid and that maybe you dont have clusters? |
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Title: Re: Please respond RE:No Meds Strategy Post by Margi on May 20th, 2005, 4:37pm on 05/20/05 at 16:05:54, jefferator wrote:
not a good line to use on this crowd, Jeff. But let me get my jammies and my popcorn ready for when some of the cluster vets read that line. Jonny? Linda? BobP? you're part meegrainers....did you know that? And...the name's not Marg. And I'm not your dear. You say you came here to get some advice, yet you're arguing with everything everyone is trying to teach you. |
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Title: Re: Please respond RE:No Meds Strategy Post by seasonalboomer on May 20th, 2005, 4:45pm on 05/20/05 at 16:37:09, Margi wrote:
Oh Margi, you are a dear though --- you prove it every day on these boards.. Don't let that dander you've gotten up hide that fact. Jeff's got 20 years under his belt and it sounds like he's done his homework. His original question has been addressed don't y'all think. Some do feel that meds can lengthen the cycle, while helping ameliorate the effects of the hits. Is that a fair conclusion in between all the one-ups-ing going on. |
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Title: Re: Please respond RE:No Meds Strategy Post by SteCo on May 20th, 2005, 4:52pm Quote:
Interesting statement....I have a couple of years on you. I was originally told by my doc that the prime age was around 40? I kinda assumed, for the most part, most were 30's,40's,50's in here. Could be wrong tho. It seemed in my midish/late 30's things progressively got worse and have not let up. I so hope your statement is true! SteCo |
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Title: Re: Please respond RE:No Meds Strategy Post by jefferator on May 20th, 2005, 5:19pm After two weeks of no sleep Margi...let me just say this once, and only once...I wont reply to your posts...dont reply to mine... How bizarre that people actually have prided up to the type of headache they have to be offended by the suggestion some have dual symptoms...that is just a bit too weird for me. My comment, for the non-insulting and attacking, were firstly, if read correctly, said "virtually all" Virtually being the operative word, but were really centered around two common Migraine symptoms, but one that is not supposedly associated with Clusters which is why my old neuro said I am a hybrid as are most. That is light and sound sensitivity. Even on the left column of this board under cluster quiz it asks in the YOU DONT HAVE CLUSTER section...do you seek a dark quiet place when getting a headache....I have HUGE photo and audio sensitivity, as do many others, and I am as cluster as cluster gets ....that's it...any negative reaction at the suggestion that I belittled ones affliction with a lesser headache, is not only childish, but downright ridiculous... |
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Title: Re: Please respond RE:No Meds Strategy Post by Bob P on May 20th, 2005, 5:28pm Jeff, It's a pet peave around here. So many suffered for years while their doctor told them they had meegraines and treated them as such. The insurance companies only cover 6 shots of trex a month because nobody gets more than 6 meegraines a month. We're sick and tired of having our affliction treated as meegraines and one of our and OUCH's major goals is to educate the public and the medical community about that fact! In fact, we take it to the point of assuring newcomers that this is a cluster site. If you have meegrains there are plenty of meegraine sites that will help you more than this one, so see ya later. |
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Title: Re: Please respond RE:No Meds Strategy Post by maffumatt on May 23rd, 2005, 1:39am I am not as educated as alot of people here and have only seen a couple of doctors that even know what CH is. I do know that with meds my cycles are longer, trex works for me, the veins on my temple swell and hurt, and Margi knows what shes talking about. |
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Title: Re: Please respond RE:No Meds Strategy Post by Flash on May 23rd, 2005, 10:07am Well as usual I don't give a shit for the "don't use the 'm' word" policy. I too experience photophobia and full understand where Jefferator is coming from regarding the light on the VCR clock. Also during true #10 attacks (and I'm not convinced as to how many people have actually had one of those) I experience full on B&W zig zags etc in front of my eyes during the worst parts of the attack. This only happens at the peak of my episode when I'm getting hit 6 x a day and 3 hours per hit. Has also only happened during the 2 worst episodes, and one of those was certainly due to analgesic rebounds. I also occasionally experience nausea during bad attacks, and quite often suffer a blackout. The nausea often results in some retching. But aside from that the level of pain is way way way over any migraine. My cycle was 1 month on and 6-7 months remission. And I experience all the CH classic symtoms such as rapid onset, stuffy nose, red and watering eye, headache concentrated behind the eye, swelling in the throat, bradychardia (my fuckin fav that one!), horners sign, shadowing, nocturnal wake up calls, REM onset... need I go on. In fact I suspect were there not this neurotic anti-migraine thing going on... and it's been going on for years... then more people might openly report these symptoms. There are people hanging out here that I suspect don't have CH but the less said... |
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Title: Re: Please respond RE:No Meds Strategy Post by pattik on May 23rd, 2005, 10:38am on 05/20/05 at 04:52:43, Flash wrote:
Just want to put in my [smiley=twocents.gif]...I'm closing in on almost 40 years of headache experience-15 years of classic meegraine (with aura)then progressing to only clusters. I agree totally with Flash regarding the effects of medication. Trex use to be so seductive to me until the rebounds started in. I have never been one to blindly accept any med suggested to me by my doctors, as tempting as it has been, and I will always try natural solutions first. Prescriptions for the noggin are very potent and often very dangerous, and I feel that they are often over-prescribed and appropriate only for serious depression and mental illness. |
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Title: Re: Please respond RE:No Meds Strategy Post by Marc on May 23rd, 2005, 10:39am Quote:
Quote:
I am in total agreement with both statements, but it’s a touchy subject around here these days. My opinion has nothing to do with who “belongs” here, but rather applying the right treatment based on the type of headache. Respectfully, Marc |
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Title: Re: Please respond RE:No Meds Strategy Post by Dark_Funeral on May 23rd, 2005, 11:03am I am a sufferer of chronic migraine, chronic daily headache and episodic cluster headache and I can tell you now the migraine doesnt touch the pain of the cluster. And I have had migraines on the KIP scale 8!!! I have had children and I can honestly tell you that even my cluster pain is comparable to that, in fact its worse even. Im 33 and my cluster cycles are about 5 months and nocturnal 4 nightly attacks in the mid-spring through Summer. When I was younger they were in the Summer. I have migraine all year around. My clusters started in my mid twenties. My migraines when I was 11. Chronic Daily Headache in my teens. Im currently on Topiramate as a preventative and Imigran (Imitrex to you in the US as abortive) I also use heaps of Codiene or whatever else I can get my hands on OTC. Mine hits the left side, the eye, the ear, back of neck etc Naproxen, Ibuprofen etc I find useless, sometimes sticking frozen peas against my eye or whacking the head against the wall helps!!! Well it doesnt but I do it anyway... |
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Title: Re: Please respond RE:No Meds Strategy Post by blueeyes_rn on May 25th, 2005, 12:28pm ;;D I have a huge smile today because I finally after 6 years found a specialist willing to work with me. I live in the sticks of Pennsylvania. Instead of Verp I am starting on ** Amitriptyline** (Brand names: Elavil, Endep) Once a day at bedtime and like I've been reading in the other replies they believe Elavil helps with the Hypothalmus and because you take it at bedtime it works when CHs usually happen for me right when I get into REM and early morning!! I am a nurse and have been researching CHs for years, have read just about everything there is to read. My stupid PCP took too long getting me the refferral so theis cycle seems to be over after 6 weeks!! I've read that starting a corticosteriod (i.e prednisone) taper for about 12 days along with a preventative therapy (i.e. verap, lithium, or elavil) at the peak of a cycle has proven more effective. Best Wishes for shorter cycles and longer PF time!! blueeyes_rn |
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Title: Re: Please respond RE:No Meds Strategy Post by Flash on May 26th, 2005, 8:58am It probably won't work, but will: A) cause irregular heartbeat. B) Make the whites of your eyes turn yellow whilst taking it. This is reversable. C) Make your mouth go very dry especaially in the mornings. D) Take a minimum of 3-4 weeks to deliver any sort of improvement. I'd advise asking for a long acting low dose of beta-blocker such as propanolol, such as Half Inderal LA to counteract item A). NOTE - keep the beta-blocker dose low as a symptom of CH is bradychardia which is slow heartbeat and beta-blockers can make this much worse. |
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Title: Re: Please respond RE:No Meds Strategy Post by BobG on May 26th, 2005, 10:30pm My two cents, I’m confused…………… Is it the veins that contract and the vessels dilate? Or, vessels contract? Or the veins that explode after constricting? Or,……..oh, fuck it……..never mind. It's giving me a tension headache and it hurts sooooo bad. Quote:
Every? 101% wrong. And Who the fuck is Dottie Pepper? |
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