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Cluster Headache Help and Support >> Cluster Headache Specific >> Re: Confusedd.. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1349004091 Message started by Kevin_M on Sep 30th, 2012 at 9:05am |
Title: Re: Confusedd.. Post by Kevin_M on Sep 30th, 2012 at 9:05am Quote:
For your own curiousity and as a general guideline, there's a cluster quiz on the left-side tabs you could go through and answer. Quote:
Keep a headache log of all your times these happen; date, time (start to finish), intensity (1-10), any preceding symptoms or possible triggers, what medication you took and if and when relief. This will help dialogue a trend helping with the diagnosis. Quote:
A low dose may have little effect, but you could see if any of the power drinks guzzled can help, like Red Bull, Monster, Rock Star, or even Starbuck'd Double Shot. At night, melatonin before bed and maybe an ice pack against the affected side could be an aid. |
Title: Re: Confusedd.. Post by Karla on Sep 30th, 2012 at 2:02pm
my first cycle lasted 10 very long months. I had two months off and then had them year round. I was diagnosed as chronic meaning you go with a month or less year round break. Lets just pray that if it is ch your not chronic and that you have a short 6-8 week cycle. Only time will tell what you will be like. Everyone is different. And the cycles can change even for a person once one is established. Usually just when you think you have it all figured out a wrench gets thrown in the works. Good luck!
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Title: Re: Confusedd.. Post by Guiseppi on Sep 30th, 2012 at 2:07pm
Predicting the cycles can lead you to a lot of stress! The nature of the beast is to be unpredictable. You will need a home oxygen set up. If you don't start it within the first few minutes its worthless so driving tot he clinic to get it will prove a waste of your time. :-/
120 mg is way low, we have people at 960 a day to get relief. Careful with the OTC's, they'll rip up your insides and really do very little. Good luck with the neuro, really hoping he's knowledgeable on CH. Joe |
Title: Re: Confusedd.. Post by Bob Johnson on Sep 30th, 2012 at 7:26pm
The meds your doc has given indicate a lack of basic knowledge about Cluster. This is why I sent the PDF file for your information.
The Verap dose is too small. Following is a widely used protocol but docs who don't have training/experience in headache get scared at the high doses which we require. Another reason to find a headache specialist. ================= 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. |
Title: Re: Confusedd.. Post by shooky on Sep 30th, 2012 at 8:18pm
My two cents:
1. Be sure you know and avoid common triggers - alcohol, nitroglycerin meds, pde-5 meds (viagra and such), extreme temperature changes, dehydration, strong smells (thinners, perfumes etc). 2. Look for possible personal triggers, especially things that are NEW in your personal environment and may have triggered this episode: foods, cosmetics, air conditioning, plants, etc (a bit like with allergies, although it isn't actually allergy). 3. Start using O2 with NR mask ASAP, and make sure you're doing it right. 4. Get some king of a triptan (Imitrex and the like) in a quick release form - personal injections, dissoluble wafers etc. Use them as abortives when you must. 5. Coffee and energy drinks are sometimes very helpful. You should drink them quickly on the onset of an attack, just after drinking a glass or two of water. 6. Heating/cooling helps - it's personal. Find out what helps you and do it. Some use ice, some use warm cloth. Good luck. |
Title: Re: Confusedd.. Post by Guiseppi on Sep 30th, 2012 at 9:41pm
I'm fortunate like you in that I don't have any other health issues other then CH! I'm a hard core work out nut and big time cyclist, never smoked, and after 35 years of CH I STILL can't figure out what starts a cycle...other then the time of the year, for me spring and fall. On cycle I've learned my triggers, alcohol, major sleep disruptions, sustained stress and extreme hunger. Avoiding these doesn't eliminate the attacks, but does reduce the number.
The triptans work on several headache types, they were originally designed for migrains, turns out they stop CH also! The oxygen is harmless no matter what your headache type, the only reason we caution against using it and not seeing a doctor as it could be masking a more serious issue. These are rare but still good to have a doc eliminate them! Hopefully they are not CH, but if they are, it's not the end of the world. A hell of an inconvenience, but you get to hang out with all of us cool people, ;) Joe.....a really cool person! ::) |
Title: Re: Confusedd.. Post by Guiseppi on Oct 3rd, 2012 at 8:20am
If it is CH, it's a lifetime ailment. Meaning even when they go away this time, another cycle is always looming. It's not a requirement you see a neuro, just a good idea to make sure we're not missing anyhting more sinsister going on with your head.
Given your current status you should also spend some time here: Clusterbusters.com Joe |
Title: Re: Confusedd.. Post by japanzaman on Oct 3rd, 2012 at 10:30am
Look, if you have cluster headaches then you need to get your parents to understand that you're going to need some help to get through this. You need to be examined by a trained specialist so you can get the most accurate diagnosis and most effective treatment for clusters. There is no need to be suffering needlessly through this if you have the means to seek help.
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Title: Re: Confusedd.. Post by Traveller on Oct 3rd, 2012 at 11:40pm
My two cents.
1. Verapamil dose is definitely low. 240mg minimum, others find much higher levels helpful. Its powerful stuff, so stay with your doctor on this one and don't self-dose. 2. What has been said about the nature of cycles is absolutely true. While not "random" there is substantial variation from person to person and from cycle to cycle. Mine didn't start until I was 56. 3. Yes, yes, yes. See a neurologist as soon as you can get to one. Do your best to find one who has some experience with this malady. 4. Finally, ask, ask, ask. This site has a wealth of experience and compassion. There isn't much that people here haven't experienced. Good luck to you. Its a miserable malady, but as has been noted, it won't kill you. It can be gotten under control and life goes on. |
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