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Cluster Headache Help and Support >> Cluster Headache Specific >> My worst one yet! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324134653 Message started by barenibar on Dec 17th, 2011 at 10:10am |
Title: My worst one yet! Post by barenibar on Dec 17th, 2011 at 10:10am
I just got over one that lasted about two hours and I am so tired. I think that this was the worst one I've had in a long long time. I can usually feel it coming on and when I do I run for the caffeine, but this time I stood up and it came on strong in the span of a minute. I immediately downed 4 Excedrin Migraine but this time it didn't help. I started squeezing my head which didn't help at all, then started pacing, I punched the wall a couple times, bit on the medicine bottle to try and help ease the pain, but it didn't help at all. After about an hour, I had nothing left, I went up to the shower and cried for a while just because there was nothing else I could do. Even now I feel like the shadow is still there and it scares the hell out of me. You feel like you have no control and will do absolutely anything to stop it.
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Title: Re: My worst one yet! Post by seaworthy on Dec 17th, 2011 at 10:43am
You dont have abortives?
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Title: Re: My worst one yet! Post by LasVegas on Dec 17th, 2011 at 11:26am
barenibar,
You are not alone, we completely understand your pain and frustrations! Go to the store and get a Redbull or other energy drink containing Taurine/Caffeine. At onset (as soon as attack begins) drink it as fast as possible and all of it. This tip has aborted attacks for me on occasion and has helped many others also. Icepacks, frozen bag of peas, stick head under cold shower, face in front of air conditioning vent (on high) in car or if you have a turbo speed type fan in your home...these are all tips that have helped me and others reduce the pain, but not abort the attack. Ideally, you follow Joe's recommendation of getting 100% oxygen ASAP. The least expensive and fastest way to get o2 is from a welders supply shop. No prescription is required. Just don't tell them you are breathing it. They might lease you a tank, certainly they will sell you a tank. A regulator from Harbor Freight is effective and minimal cost compared to other o2 regulators. A Non-Rebreather (NRB) mask from the ch.com store is the best available, minimal cost and fast shipping. The yellow tab on the left side of your screen will provide you with o2 info, the ch.com store, etc. Do you have medical insurance? You will want to schedule an appointment with a neurologist and/or headache specialist ASAP to rule out any other disorder and of course for (1) Transitional meds, (2) Preventive Meds and (3) Abortive meds. Melatonin at night may help reduce the intensity and frequency of attacks. Where do you reside? There are recommended doctors on the OUCH website-yellow tab on the left side of your screen. If you have family, friends, etc that can help you out by respectfully leaving you alone during an attack...fantastic! Nobody likes being asked questions and suffering in front of others while being TORTURED by the DRAGON. Regarding being alone, you are not alone...we on this board understand your pain, frustration and many of us are consistently on this site daily providing support to those of us suffering. Read as much as you are able and educate yourself about CH's. You will need plenty of patience, a gameplan for treatment and you will need to be your own self advocate! "Knowledge is Power!" Do NOT take the Excedrin migraines nor other OTC (Over The Counter) meds if they are not providing you relief. We have found over the many years of trial/error that OTC meds such as Excedrin and even narcotics do NOT ease the pain of CH's. In fact, most of us agree that OTC and narcotics create rebound headaches (additional unwanted pain). Get some Redbulls and o2 lined up, start reading, schedule your doctor appt and keep us updated. There is hope, be tough, you are not alone, we are here for your support and can help you get through this. -Gregg in Las Vegas PS Stay away from punching walls ;) |
Title: Re: My worst one yet! Post by Mike NZ on Dec 17th, 2011 at 3:42pm
A full blown CH which isn't aborted is pretty horrible from personal experience. The difference in being able to abort it using oxygen in minutes is simply life changing.
You've had some excellent advice which you need to follow up on. There is no need for you to have to wait out for a CH to run it's course. |
Title: Re: My worst one yet! Post by barenibar on Dec 17th, 2011 at 9:44pm
Thanks for all the suggestions you guys, it means so much to me. As soon as I finished writing my initial entry it came back full blast. I started balling and asked my wife to run and grab me some energy drinks to try and chase it away. I think part of it was that I was in pain but also scared to have to endure it again. The thing that sucks about these is they disappear as fast as they come on. The second she walked back in the door it vanished. I still drank the energy drink for fear that it would return, but how do you explain going from a pain that brings you to your knees to being perfectly fine. I am making an appointment to see the neurologist on Monday and will definitely pursue the oxygen route. Thanks you guys, hope tomorrow will be a better day.
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Title: Re: My worst one yet! Post by LasVegas on Dec 17th, 2011 at 9:49pm
You're welcome, it's common to enter/exit equally fast, you're not alone, be tough!
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Title: Re: My worst one yet! Post by PlayDoh on Dec 18th, 2011 at 12:02am
Great advice peep's, Las Vegas especially.
I'll add Batch's Anti-Inflammatory Preventative Regimen for Cluster Headaches, despite sounding like a broken record. :-X Here's the list of vitamins Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day) Vitamin D3 * - 10,000 IU/day Calcium ** - 500 mg/day (calcium citrate preferred) Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate) Vitamin K *** - 120 mcg/day zinc - 10 mg/day Boron - 1 mg/day This regimen can be taken any time of the day, but it's best taken in the morning with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey. Honey is a natural source of Boron, which is listed as one of the "co-factors" along with magnesium, vitamin K and zinc. by Batch In addition, I take a multivitamin by Bayer called "One-a-Day" with Selenium. Here's the ingredients Multivitamin with extra Selenium (Men's One-a-day) It only costs about $40 at the most to give it a try. Well worth the chance at being Pain-Free, Plus its not going to hurt. In fact you'll be all the better for it. I'll echo the advice about refraining from Painkillers. They do nothing but eat your liver, unfortunately. |
Title: Re: My worst one yet! Post by Bob Johnson on Dec 18th, 2011 at 9:20am
TO THE OLD-TIMERS:
PREMATURE ABORTIVE TREATMENT We are all drawn here to learn and, to a great extent, to share our experiences with coping with CH. The urge to offer relief to people, most especially to the new souls who in the great stress of experiencing the unknown, pushes us to offer our best ideas/experiences on understanding and coping. With success comes appreciation and inner satisfaction that we have been of benefit. The concern I'm raising is that we can mislead by offering a solution to the pain which, because it works, may draw the suffer away from exams which would reveal a more serious medical condition. Cluster-LIKE headaches (definition below) often respond to the abortives which we find effective. The subtle clue that this may not be CH is that the action of the abortive is briefer and recurrence of the attack develops more quickly. (Of course, the new sufferer does not have the experience to make this judgment and is primarily in love with the new found relief.) Very directly: I'm suggesting that we do not recommend specific abortives unless we know that a formal diagnosis of CH has been made. Masking a more serious problem is a greater "sin" than not offering immediate relief to headache. Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15. Cluster-like headache. A comprehensive reappraisal. Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G. Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it Abstract Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks. WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED. PMID: 19735480 [PubMed] |
Title: Re: My worst one yet! Post by LasVegas on Dec 18th, 2011 at 10:15am
I agree with Bob J to see a headache specialist and rule out anything that may mimic CH's or other disorder. I also agree the importance of not self treatment until an official medical diagnosis has revealed Ch's and there is no such other disorder.
No harmful abortive nor harmful preventive treatment has been recommended by any member on this thread. We did recommend scheduling an appointment with a neurologist and/or headache specialist ASAP to rule out any other disorder and of course for (1) Transitional meds, (2) Preventive Meds and (3) Abortive meds. Lastly, barenibar the member suffering, did state on several previous threads (Getting to know you-"Fresh Fish"-12/9/2011) that he has been diagnosed at least two different occasions by headache specialists, has been an episodic Fall sufferer for over a dozen years since high school, skipped last year's cycle, 11 yrs in the USAF where the medical care is significantly lower, and currently resides in Maryland, etc., etc. I always try to read a new members history of posts, if applicable, before I offer recommendations and did so on this thread. |
Title: Re: My worst one yet! Post by Bob Johnson on Dec 18th, 2011 at 12:37pm
LasVegas, msg. #10. The point is NOT that any recommendation/med is dangerous, but just the opposite.
If the pain is resolved with a standard cluster med most would conclude that he has Cluster and the med is helping. BUT because a med is effective it may be killing the pain of a non-Cluster disorder, i.e., we are mislead into a wrong conclusion. One of the tests to resolve this dilemma is: if, for example, Imitrex kills the pain but it doesn't work as long or as consistetly as expected, what's going on? One possible explanation is this is not a case of Cluster. So, a sharp doc, rather than just changing meds, would reexamine the diagnosis of Cluster. Could it be one of the Cluster-LIKE disorders. (Link to: cluster-LIKE headache. Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache") |
Title: Re: My worst one yet! Post by LasVegas on Dec 18th, 2011 at 12:42pm Bob Johnson wrote on Dec 18th, 2011 at 12:37pm:
Bob J, I understand and agree with your statement. However, this does not apply on this specific thread as he HAS been diagnosed with CH's, at least twice. |
Title: Re: My worst one yet! Post by jon019 on Dec 18th, 2011 at 2:03pm Bob Johnson wrote on Dec 18th, 2011 at 9:20am:
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Title: Re: My worst one yet! Post by Guiseppi on Dec 19th, 2011 at 9:56am
I too struggle with Bob's concern. People come here in exruciating pain, many have endured it for years, and have given up on ever finding relief. It breaks my heart when I hear the despair in their posts as they casually talk about another night of 2-4 attacks, lasting an hour or more each, and all they have are hot showers and ice packs.
So while I will always suggest a headache specialist neuro, with all of the scans and procedures necessary to eliminate all other sinister possibilities for their pain, I will also remain cognizant of the fact that many people cannot even afford a trip to a GP. In my mind, it's a simple case of trying to bring a level of quality to peoples lives. Is there a chance someone will alleviate their pain, and allow a more sinister problem, tumor, etc., to develop? Yes. But the fact that they have just endured the pain for years and years, tells me they never would have done the necessary testing anyways, and the only negative thing I would have done is alleviate some of their pain. Both sides have their points. Everyone should have access to the tens of thousands of dollars in medical procedures necessary to correctly diagnose and treat every potential medical condition. The reality is, this is currently not the case in our country. I'll let those who love to get excited about politics run with that for the next 20 years. ;) I will continue to encourage the use of a headache specialist neuro, but will also give suggestions to alleviate what I feel to be some of the most horrible suffering a human can endure. Joe |
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