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Cluster Headache Help and Support >> Getting to Know Ya >> Just diagnosed yesterday. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1275667803 Message started by Jim L on Jun 4th, 2010 at 12:10pm |
Title: Just diagnosed yesterday. Post by Jim L on Jun 4th, 2010 at 12:10pm
I'm 48, male, and I've suffered from, and have been treated for migraines since I was a kid. I've gone through waves...errr. CLUSTERS of them and my new Dr. yesterday asked a bunch of pointed questions (tears? congestion? fast onset? excruciating? "Yes," to all). Sumitriptan has/had been an effective abortive, but insurance has limited the number per month and I've had to ration them.
A particularly bad cluster began about three weeks ago and I've had 1-3 headaches per day. Chugging a couple of colas and Excedrine Migraine and ice packs have aborted a few, but I ended up going to the Dr. because the headaches were getting worse (not QUITE as bad as the scary YouTube videos, but close) and even the stereotypical banging my head against the shower tiles while alternating between hot and cold water wasn't helping at all. I've been trained in mindfulness-based stress reduction (i.e., meditation) for headaches and that stopped working for this latest round. Anyway, I'm glad (in a perverted way) that a label has been attached and some treatment has been started (predisone for a while and verapamil 240mg). He also gave me a few percocet, but they didn't touch the two headaches I got last night. Pattern started this cycle (and yes, I can in retrospect see that most of the other migraines have been in cycles, but never more than a few days) -- 2pm like clockwork at first and then after a few days an additional one between 2-3am. Of course I had heard the term "cluster headache" before but hadn't really researched it. I did a lot of reading yesterday and I'm glad to have discovered this group. No oxygen prescribed yesterday. Dr. wants to see if the steroids break the cycle first. I'm okay with that if it doesn't last more than another couple of days. I've got a follow-up appointment next week and will get the oxygen in place -- It looks like my insurance will cover that with a 10% copay. My experience with sumitriptan (tablets) is that they work pretty quickly for me if I grind them up first and swallow with a lot of water. Since my headaches, untreated, last 2 or 3 hours, the wait time of 10 or 15 minutes for the sumitriptan to kick in is tolerable. The number of pills (9 per month) allowed by insurance is clearly not enough. My Dr. checked for me and the generic at WallMart isn't much more than my normal prescription copay, so that may not be a big problem. I AM worried about taking too much, though, since I have high blood pressure and a family history of heart disease. My doctor says that he diagnoses about 4 new cluster headache cases, so I turned out to be the "case of the day" yesterday for a bunch of medical students (my medical care comes from THE major teaching hospital in Durham, NC). Fortunately, I didn't actually have a headache during the office visit so I was glad to talk with the students. Jeez -- I go back and read this and sound like Pollyanna and that is not really the case. I have been in agony and have been angry/hostile to almost everyone around me the past few weeks. My partner is used to the headaches and leaves me alone, but I have really held back in wanting to scream and rant while I've got a headache the past few weeks because he's easily upset and has a heart condition. Mostly, I've made him get out of the house for a couple of hours (if it is not the middle of the night). So, I'm looking forward to adding oxygen. I'd never heard of the mushrooms out there and am curious.... Jim |
Title: Re: Just diagnosed yesterday. Post by Jimi on Jun 4th, 2010 at 12:32pm
Welcome to the board.
Good luck with the pred taper stopping your cycle. Usually they stop during the taper but come back after the taper is over. It sounds like your doc is on top of it (although I would have insisted on the 02 script while I was there). The only other thing that you may try is an energy drink like Red Bull etc. Chog one down at onset. Make sure it has taurine in it and the more the better. If you start having them during the night, read up on melatonin. Next week ask that the regulator is at least 15 lpm with a non-rebreather mask. Again good luck and welcome. |
Title: Re: Just diagnosed yesterday. Post by Bob_Johnson on Jun 4th, 2010 at 2:37pm
Working with the Durham folks makes it awkward to offer much advice!
Impression: your treatment program is complex and open to changes rather often, I sense. My bias is to find an effective program and then be consistent/stable. CH is often difficult enough to manage and my concern is that too many changes makes it difficult to define what is effective/stabalizing. The Verap dose is low, by our "standards". This protocol and approach is widely used now: Headache. 2004 Nov;44(10):1013-8. Individualizing treatment with verapamil for cluster headache patients. Blau JN, Engel HO. Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018). ======================================= SLOW-RELEASE VERAPAMIL Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted. “I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.” Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented. ======= Our collective experience is that Imitrex injection is faster working than the pill form and is especially important because of the rapid onset of CH. My reading of the literature is: unless you have a personal history of heart problems, there appears to be no significiant threat to you using it. But this reduced use may comfort you and it's very effective for many of our folks.... ------ Headache. 2005 Sep;45(8):1069-72. Treatment of Cluster Headache Attacks With Less Than 6 mg Subcutaneous Sumatriptan. Gregor N, Schlesiger C, Akova-Ozturk E, Kraemer C, Husstedt IW, Evers S. Background.-Subcutaneous (SQ) sumatriptan 6 mg is effective in the treatment of acute cluster headache attacks. However, patients sometimes benefit from a dose less than 6 mg. Objective.-Therefore, we designed a prospective open study to evaluate how many patients benefit from a dose less than 6 mg SQ sumatriptan. Methods.-We enrolled 81 consecutive patients with cluster headache and recorded their use of SQ sumatriptan and oxygen. Patients regularly using SQ sumatriptan 6 mg were advised to treat attacks with doses less than 6 mg and with oxygen. Efficacy and side effects of the different treatment options (6 mg, 3 mg, 2 mg, and oxygen) were evaluated. Results.-As a result, 74% of the patients using SQ sumatriptan 3 mg showed efficacy and 89% reported efficacy after 2 mg. Seventy-nine percent reported side effects after the use of SQ sumatriptan 6 mg (29% severe side effects). After the use of 2 mg SQ sumatriptan, only 50% of the patients reported side effects, none of these were classified as severe. Patients' preference was 41% for 6 mg sumatriptan, 28% for doses less than 6 mg, and 31% for oxygen. Conclusions.-We conclude that sumatriptan in doses less than 6 mg can be effective in the acute treatment of cluster headache attacks. We suggest that patients should have experience in their individual efficacy of sumatriptan doses less than 6 mg. (Headache 2005;45:1069-1072). PMID: 16109122 ============= Search of PubMed in 3/09 found no abstract later than 2004 and none specific to Cluster Headache. ============================================================= Neurology. 2004 Feb 24;62(4):563-8. Triptans in migraine: the risks of stroke, cardiovascular disease, and death in practice. Hall GC, Brown MM, Mo J, MacRae KD. Institute of Neurology, University College London, UK. gillian_hall@gchall.demon.co.uk BACKGROUND: Triptans are widely used to treat migraine but have been associated with stroke, myocardial infarction (MI), and ischemic heart disease (IHD) in case reports. OBJECTIVE: To estimate the incidence of stroke, cardiovascular events, and death in a migraine cohort, stratified by triptan prescription, and investigate whether the risk of these events was increased in those treated with triptans. METHODS: Migraine patients and matched nonmigraine control subjects were identified from the General Practice Research Database. Computerized records were searched for triptan prescriptions, stroke, TIA, MI, IHD, death, arrhythmia, and confounding variables. Incidence rates were calculated and migraine groups compared with controls using a Cox model, adjusting for confounders. RESULTS: Of 63,575 migraine patients, 13,664 were prescribed a triptan. There was no association between triptan prescription and stroke (hazard ratio [HR] 1.13; 95% CI 0.78, 1.65), MI (HR 0.93; 95% CI 0.60, 1.43), or other outcomes studied. The larger group of migraine patients not prescribed a triptan had an increased risk of stroke (HR 1.51; 95% CI 1.26, 1.82) and IHD (HR 1.35; 95% CI 1.18, 1.54) and a decreased risk of all-cause mortality (HR 0.72; 95% CI 0.65, 0.80). CONCLUSIONS: IN GENERAL PRACTICE, TRIPTAN TREATMENT IN MIGRAINE DOES NOT INCREASE THE RISK OF STROKE, MI, CARDIOVASCULAR DEATH, IHD, OR MORTALITY. TRIPTANS ARE PRESCRIBED TO THOSE LESS AT RISK OF THESE EVENTS. Publication Types: Research Support, Non-U.S. Gov't PMID: 14981171 [PubMed ] ========= If you want to try an Imitrex-free approach, a number of us have had excellent results with this med and its use is starting to appear in lists of recommended treatments. -- Headache 2001 Sep;41(8):813-6 Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE. PMID 11576207 PubMed -------------------------------------------------------------------------------- Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ. === Best wishes.... |
Title: Re: Just diagnosed yesterday. Post by Guiseppi on Jun 4th, 2010 at 3:01pm
Wishing you luck with the Pred. There is a small percentage of CH'ers that can break a cycle with prednisone, hoping you're one of them.
Danger Will Robinson....... ;D......if you're like the rest of us, the prednisone will block them completely, but when you go off of it, they will come back with a bit of a vengeance...what I call the "a$$ kicking attacks. Not saying be scared of the boogie man, but have your abortives close at hand when you finish the prednisone just in case. And take the time now to study up on the oxygen. Been a life saver for me for many many years. My attacks went from 90 minute head bangers to 6-10 minute annoying head aches. And your insurance will love it because compared to most treatments it's dirt cheap. Regarding "alternative treatments" check out clusterbusters.com Their success rate is pretty damned impressive. Glad you found us, welcome. Joe |
Title: Re: Just diagnosed yesterday. Post by Jim L on Jun 4th, 2010 at 4:51pm
Thanks, so far for the information guys. This afternoon's headache just ended and it was a doozy. I feel beat up and exhausted. And depressed.
Bob, clearly you've got a lot of information and look forward to hearing more. I didn't mean to brag at all about Duke doctors in general -- many of them are pompous jerks. Please, I need all the advice I can get! What are side effects of high doses of verapamil? I'll see about a higher dose if the current dose doesn't help. I've already emailed my doc about oxygen and getting imitrex in injectable form. Is there a generic? The Prednisone is already tearing up my stomach. I'm not sure I'll continue with it, especially if there will be rebound to deal with. Oxygen: do you guys just have it at home, or do you also keep a cannister at work? What is it about red bull that helps? The caffeine? Again, thanks -- While I'm feeling okay right now I'll read some more on the message boards. Jim |
Title: Re: Just diagnosed yesterday. Post by Guiseppi on Jun 4th, 2010 at 5:00pm
High dose verapamil can result in dangerously low blood pressure so you just have to monitor BP as you go up. Some go as high as 960 mg a day to get relief.
The energy drinks have the combo of caffeine and taurine in them. It seems to be the combo of those two that helps us CH'ers. Imitrex has gone generic so it's a bit cheaper then it used to be. Do NOT suddenly stop the prednisone. Taper off of it at the doctors direction as stopping it suddenly can cause medical problems. I use only E-tanks for my oxygen, some use the larger M-Tanks. On cycle I keep an 8 pack of E-Tanks in the garage. I always have one with me in my car when I'm out and about. Used to carry one in the trunk of my cruiser when I was still working! We have a little red overnight bag I keep with me when I am on cycle. It has lithium so I can always take it at the right spacing. 3-4 cans of sugar free Red Bull, my energy drink of choice. My imitrex kit with spare shots, excederin for migrains....when all else fails, this will handle those annoying shadows, and 4 Way Nasal Spray. Also useful for shadows. Joe |
Title: Re: Just diagnosed yesterday. Post by neuropath on Jun 4th, 2010 at 5:13pm
Your prednisone dose should be taken with/after food and be accompanied by a famotidine to protect the stomach. It is also not uncommon for potassium supplements to be prescribed with prednisolone, if taken at high dosages.
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Title: Re: Just diagnosed yesterday. Post by Lefty on Jun 4th, 2010 at 6:33pm
Welcome,
A small minority have been known to have their cycle broken by a pred taper. You seem pretty well covered so lets hope it's not such a bad cycle. Lefty |
Title: Re: Just diagnosed yesterday. Post by neetnut on Jun 6th, 2010 at 1:01am
Jim I have had CH for years and am taking the Imtrex shots. I only get relief from the beast if I am lucky for maybe or month or two. During which time I may suffer one or so CH. Because I do not have a long period of remission my neurologist prescribes me what is referred to as a 6pk. A total of 12 shots a month which was great. About 6 months ago, BCBS medical insurance decided out of the blue with no notice to me to cut my shots in half. I now receive half the dosage with the same copay. Recently my ch were coming strong every 6 hours and continued for almost two weeks. Naturally I went through all my shots. I called my neuro and he called in a different prescription to abort the headaches. BCBS denied the medication and left me hangin. I was furious and called them complaining, of course they didn't care policy is policy I was told. The last couple of days I suffered through in agony of each ch sucking on o2, which does help to take the edge off. We are about to switch to health plus ppo and hopefully can get back on the 6pk of imtrex. Does anyone have info on this medical coverage and the script for imtrex? Will they cover it?
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Title: Re: Just diagnosed yesterday. Post by Ginger S. on Jun 6th, 2010 at 9:32am neetnut wrote on Jun 6th, 2010 at 1:01am:
My health plan is a PPO but they will only cover 4 shots per mo. for a work around my Neuro also prescribed the nasal Imitrex, the ins. will cover both types in the same month. The nasal doesn't work as well as the shot or as fast, but eventually it does work. I try to save my shots for hits at work and use O2 or nasal at home, for the milder hits I will use a nasal Imitrex at work. Good Luck with your new ins. |
Title: Re: Just diagnosed yesterday. Post by Guiseppi on Jun 6th, 2010 at 9:54am
Can't help you with the insurance question. Check out the imitrex tip tab on the left. Many can get 3 aborts per shot by using the tip. Can't be too terribly squeamish about needles.
Joe |
Title: Re: Just diagnosed yesterday. Post by neetnut on Jun 6th, 2010 at 1:12pm
I read about the imitrex tip the other night and will diffidently give it a try. Anything to make them (shots) last longer is a benefit for all us sufferers.
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Title: Re: Just diagnosed yesterday. Post by bejeeber on Jun 6th, 2010 at 2:22pm
Glad you're giving that a try - it's been a real lifesaver for myself and many others.
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Title: Re: Just diagnosed yesterday. Post by Jim L on Jun 6th, 2010 at 4:34pm
Between headaches this weekend, I've been voraciously reading posts on CH.com. My partner thinks that I'm obsessing too much and that I need to take my mind off it and relax between bouts.
I didn't get my normal 2pm headache today, but I did wake up this morning with a MIGRAINE on the other side of my head. Definitely not the searing moster hit of a cluster and much like the migraines I've gotten since I was a kid. I'm scared to death that the two are going to overlap for a while. I managed to get an imitrex into me this morning and that took away the migraine on the right side, but I've had a definite shadow of a cluster all day on the left side. Do others of you have both types of headache? What about your jobs? I've got a management, number-crunching, stare-at-a-computer-most-of-the-day kind of job and the powers above me are getting frustrated with my headache time. I've got intermittent FMLA paperwork in place, but I've always been an over-achiever and in the past year or so my superiors are starting to indicate that I'm not performing up to expectations. I've got pretty good health insurance and need it for both myself and my partner, who's had cardiac bypass surgery. I'm beginning to think that I need to, at least for a while, get myself into a less stressful (and, ugh, lower-paying) job while I try to get the newly-diagnosed cluster headaches under control. It is a delicate balance -- I'm axious about potentially being labeled as a whiner and not "being there" (physically out sick more than average) as a manager needs to be all the time. I can (and have) successfuly argued that my headache time away can't legally be an excuse to reprimand me, but in the work world there are always work-arounds to subtly punish people who are sick. I'm lucky that I have an office where I can close the door and use ice packs or hot packs and be by myself -- I hope that very soon I'll be able to keep some oxygen there, too. I know working with someone with chronic headaches can be tough -- or any chronic severe pain, for that matter. I know (years ago) I used to get annoyed with a co-worker who was out freqently for back pain. I had to cover for her when she was out. Now, for the people who work under me, I make sure that nobody feels guilty for taking time off when they need it for pain or illness. One more thing: I've been in (psychological) therapy before for headache-related depression, but haven't done it for a few years. Do any of you find talk therapy helpful? Ideally what I'd like is to participate in a local support group of fellow cluster sufferers. My at-home support is good, but I still feel the need to shield my loved ones from my attacks and retreat to be by myself and pace around in one room when my pain is at it's worst -- I want to minimize their feelings of helplessness and, frankly, I get annoyed when I'm in pain and anyone wants to touch me. Shadow is starting to get darker -- must go drink a Red Bull and try to keep calm.... Jim |
Title: Re: Just diagnosed yesterday. Post by Skyhawk5 on Jun 7th, 2010 at 9:50pm
When I have an attack I go to my little room and the wife knows, don't talk to me, touch me or even look at me. Of course if I'm out this is a bit more difficult, but I hide as best I can. I hate being caught in public...
It took a few cycles for the wife to understand, if I need anything I'll ask for it. I have been to therapy 3 times for the depression from CH. It did help but I don't like the meds, they seem to make me care about nothing. Don |
Title: Re: Just diagnosed yesterday. Post by bejeeber on Jun 7th, 2010 at 11:26pm Jim L wrote on Jun 6th, 2010 at 4:34pm:
I think your partner is mistaken. you just gotta be really well informed, have your tactical maneuvers rehearsed, have back up plans in place, etc, and that takes a lot of time and energy. Since I am episodic I spend pretty much all my spare time during an episode researching on CH.com, and that level of vigilance has really helped me win some major battles against this beast. |
Title: Re: Just diagnosed yesterday. Post by Ginger S. on Jun 8th, 2010 at 6:37am neetnut wrote on Jun 7th, 2010 at 10:49am:
That is something your Doc can help you out with. Disability is hard to get on and your Doctor has to state that you are disabled and fill out paper work. Discuss this with your doctor and make it clear that this condition is affecting your ability to work. As to the details of filing I couldn't help with that, never done it, but I'm sure there are others here who have. My advice to get more information on this would be to start a new topic 'probably in cluster headache specific' titled "need help with Disability filing" I'm sure you'll get helpful replies. I feel for you and all others who are having problems with their employers over this condition, I've been there and done that, and it SUCKS! >:( >:( Best Wishes! |
Title: Re: Just diagnosed yesterday. Post by neetnut on Jun 8th, 2010 at 12:00pm
Thanks Ginger I will have to try that. I have contacted SS and asked them questions to see if it is even worth my time to further pursue. They are going to be sending me some information and with them being so overwhelmed with cases it could be a year or two before I even hear from anything after filing any papers.
Not getting my hopes up. |
Title: Re: Just diagnosed yesterday. Post by QnHeartMM on Jun 8th, 2010 at 2:25pm
I would think that if your CH is episodic you would not be able to collect SSDI, let alone any state programs. If chronic it's still going to be an uphill battle.
Hopefully you can work on finding good preventative therapy and then use O2 to abort like so many here. That would give you the ability to resume living your life instead of letting CH destroy it! Just my 2 cents. Wishing you some relief. |
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