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The Attacks are Back, New post from SA (Read 983 times)
sickdoc
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The Attacks are Back, New post from SA
Oct 12th, 2009 at 5:03am
 
Hi All.  Greetings from South Africa. hTis is my first time time on this site.  I have had cluster for years now, starting way back when I was in medical school - barely got through Medical School and the evaluations from the proffessors are interesting, and a direct result of what I was going through with the clusters.  It was years before an acu\tual diagnosis was made, even as a physician.  I was cluster free for three years until three weeks ago - Now I'm getting desperate. Two periods of clusters a day, one in the afternoon at 13:00 with three rapidly consecutive Kip8 attacks and then again at 1:00am.  I have had to abandon my own clinic.  Nothing's working.  I've had shots in my head - nothing, O2 - headache comes back 5 minutes after stopping the O2 regardless of how long I wear it, Verapamil 480mg a day, prednisone 80mg a day and epilim (sodium valproate 300mg twice daily)- all nothing.  I added a herbal (rhodiola also known as golden root, I think, 300mg nightly and 100mg chewed to abort an attack) yesterday and am hoping that will help. Imitrex shots help for two headaches a day, but that still leaves four more. I feel useless and pathetic. Physician heal thy self - yeah. My neurologist will see me back in December - thanks-a-lot, Doc. Any other suggestions, WWW just made me stay up peeing all night and made the exhaustion evan worse.
Don't know if my email is automatically added to this post but for now assume it is, as according to the guidelines, that is the correct etiquette.
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Bob Johnson
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Re: The Attacks are Back, New post from SA
Reply #1 - Oct 12th, 2009 at 8:56am
 
This book written by one of the better headache doc in the U.S.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")
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The Verap dose you mention is quite low by our usual usage. This protocol  is widely used in the U.S.

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).
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)


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« Last Edit: Oct 12th, 2009 at 8:58am by Bob Johnson »  

Bob Johnson
 
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Re: The Attacks are Back, New post from SA
Reply #2 - Oct 12th, 2009 at 9:43am
 
Wow Doc, I am sorry to hear of what you are going through.  Proof again that this illness doesn't care who you are.

I don't know if it will help you or not but given your situation anything is worth a shot at this point.  I've been taking the Kudzu root Herb for awhile now and it has helped to lower the intensity and frequency of the CH hits along with my other medication.  2 or 3 per day should help and you should start to see some result with in the first week or two. 

To help you get through the night try Melatonin (many others here take it) or if that doesn't work try an over the counter allergy pill such as Zyrtec (generic- citirizine). One of the above taken about an hour before bed may help you get through the night without a CH hit.

I hope things get better for you soon, and please stay in touch and keep us updated.
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Re: The Attacks are Back, New post from SA
Reply #3 - Oct 15th, 2009 at 11:54am
 
A CH sufferer looking for a relief has to be one of the most motivated people on the planet. The reason this is such a lively forum is that CH relief can be such a maze. So you're lengthening your list of possible remedies and systematically trying them. I went over 20 years with no diagnosis (being female I didn't fit the profile) so I got inventive. One year ice packs on the back of my neck worked. Caffeine has worked. Cafergot has worked. The exercise thing -- an intense burst of cardiovascular -- has worked. Over time my CH "morphed." I began having kind of a rebound pattern after O2 use. I ended up getting prophylactic relief with verapamil at only a 160 mg daily dose. Keep checking in for support and ideas, and good luck! P.S. I did try the mushroom cure, to my kids' continuing amusement, but as if the anxiety attacks weren't enough, I had twice as many headaches the following 24 hours.
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Re: The Attacks are Back, New post from SA
Reply #4 - Oct 15th, 2009 at 12:18pm
 
I had the same problem as you, within 10-20 minutes after shutting off the 02, the attack would come back. Now I take 2 oral cafergot when I start the oxygen. 02 beats it down, the cafergot will buy me up to 12 hours pain free time. Might be worth a shot.

Joe
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Re: The Attacks are Back, New post from SA
Reply #5 - Oct 15th, 2009 at 1:23pm
 
I used the cafergot along with my 02 as well. What flow rate did you use? If 7-8 lpm, get a regulator that goes to 25 lpm and try that.  Another pill you might try is Amerge. It is a long-lasting triptan and might help to take along with the 02. Good luck.
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