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Cluster Headache Help and Support >> Getting to Know Ya >> New here, with a question (and gratitude)
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Message started by rad60 on Feb 23rd, 2011 at 3:34pm

Title: New here, with a question (and gratitude)
Post by rad60 on Feb 23rd, 2011 at 3:34pm
I’ve been lurking through these boards for a while and have come across some fantastic suggestions. I’m one of those sufferers that has been through countless medications and medical specialists (including all the brain imaging scans, etc), and nothing was ever effective. In other words, normal.

That is, until last year. My doctor (Neurologist/headache specialist) prescribed Imitrex injections. I’d used Imitrex tabs in the past with no luck. The injections were a godsend. On my morning drive to work, it must have been awkward for a neighboring car to look over and see a guy rolling up his sleeve to give himself an injection. But I didn’t care. The only problem was my insurance didn't cover them so I was paying around $70 per shot. At three to four a day, it quickly became cost prohibitive.

Then I came across the Red Bull suggestion on this message board. I tried it and it worked. I was blown away. After 10 years, I found two effective solutions in one headache cycle. Now I feel like I can manage these damn things, and the empowerment is gratifying. So I’d like to send out a major thank you to the collective brain trust on CH.com.

Now to my plea for advice:

I’ve been thinking a lot lately about the way my life is about to change in one particular aspect, and would love to hear from anyone with similar experience. I will be starting law school in the Fall. It will be a part-time program, allowing me to continue to work full-time. The law school requires 10 to 11 class hours per week, which works out to Monday through Thursday classes at approximately 3 hours per day. From what I hear, the class hours are minimal compared to the volume of out-of-class reading/work required. I have experience with graduate level studies, but intense study and full-time work will be a new thing for me (I was a full-time MBA student and did not work).

In business school, I was able to schedule exams around my headaches. At work, my co-workers and superiors are aware of my situation and are extremely accommodating (another thing to be thankful for). For some reason, I’m not expecting the same sort of cooperation from law school professors. I have certainly never asked for a reduction in my workload (school or work) or any sort of favors, but just a tad of flexibility in the event that I’m hit with a particularly troublesome headache episode five minutes before an exam. To those who don’t understand the issue, it sounds like quite the dodge, and I can’t blame them.

Does anyone have experience with this type of situation, or something similar? How were you able to deal with it? My tentative plan is to have a stock of Red Bull and Imitrex shots always at the ready.

Title: Re: New here, with a question (and gratitude)
Post by Bob Johnson on Feb 23rd, 2011 at 3:48pm
Are you on a preventive med? That goes with the territory. Call the doc a once.

Would suggest this protocol as being widely used, effective, with a good track record.
===
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.
========
See PDF file, below.
====
And would highly recommend the first title of the following group:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
------
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....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.



http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: New here, with a question (and gratitude)
Post by Batty on Feb 23rd, 2011 at 3:52pm
Hi Rad60...
And welcome to Partners in Pain!

I am glad you have found something that works for you!
There are all sorts of, meds,regimens, 'Herbs' etc that have a different effect on individuals...
Please stick around for the 'Cavalry' and hoping Lance will be along to either shoot me down in flames or, second my next suggestion....

You schedule your headaches around your Life!

Please look at the Oxygen Info link on the left panel...
THIS is THE most important thing missing from your intro....

Here from you soon?

Respect

Gary

Title: Re: New here, with a question (and gratitude)
Post by rad60 on Feb 23rd, 2011 at 4:53pm
@Bob - thanks for the reply. I've been on Verapamil in the past, but never year round. Is that what you're suggesting? Typically the doctor puts me on some sort of prophylactic when the cluster period begins. (I get headaches once a year for about 4 to 6 weeks). If people take the preventative year round, that is good to know.

@Gary - thanks for the warm welcome! Partners in Pain. I like that. I have tried oxygen therapy in the past, but it's been five or six years. It wasn't very helpful but I recall getting the tank late in the cycle and the regulated flow was probably way too low. I will definitely discuss this with my doctor next time. I think I should try it again.

Looking forward to hearing from the calvary. Cheers.

Title: Re: New here, with a question (and gratitude)
Post by Batty on Feb 23rd, 2011 at 5:07pm

Quote:
but it's been five or six years.


Things have changed A LOT Rad!!!!

Batch will be along (Our O2 Guru) to bring you up to speed!

Respect

Gary

Title: Re: New here, with a question (and gratitude)
Post by Guiseppi on Feb 23rd, 2011 at 6:38pm
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Read this link, all the latest and greatest "how to" advice for proper use of 02.

Verapamil is typically only used while on cycle. My suggestion:

Start your field of study. Should a cycle begin, go on a 14 day prednisone taper, they usually run you from 80-100 mg a day and slowly taper down to zero. Pred will usually give me a 100% break from pain. At the same time you start the pred, you begin your verapamil as it takes 10-14 days to become effective. Pred should get you through that period.

Stockpile some imitrex injections to help get you thru any high phases on your cycle. Get the oxygen! It aborts almost as fast as imitrex, it's much cheaper, and suprisingly portable with the smaller E-Tanks. Do the footwork now to get set up with oxygen so when the beast returns you're a phone call away.

Finally, look at this web site. Non traditional treatments which have been very effective for many. Go to the top of the thread for the specific methods.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Welcome to the board.

Joe

Edited to fix the glaring error Denny pointed out! ;)


Title: Re: New here, with a question (and gratitude)
Post by Dallas Denny 62 on Feb 23rd, 2011 at 8:25pm

Guiseppi wrote on Feb 23rd, 2011 at 6:38pm:
Finally, look at this web site. Non traditional treatments which have been very effective for many. Go to the top of the thread for the specific methods.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Welcome to the board.

Joe




Hi rad60,

Joe inadvertantly gave you the link to the O2 page in this part of his response to you.....below is the link he was referring to:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


Welcome to the community!!

Dallas Denny

Title: Re: New here, with a question (and gratitude)
Post by Guiseppi on Feb 23rd, 2011 at 8:45pm
Damnit, not only am I getting old I'm going blind and getting senile! :-[ Thanks for catching that Denny.

Joe

Title: Re: New here, with a question (and gratitude)
Post by Dallas Denny 62 on Feb 23rd, 2011 at 8:49pm
I call them my "senior moments" Joe....lol!!!

DD

Title: Re: New here, with a question (and gratitude)
Post by wimsey1 on Feb 24th, 2011 at 7:43am
I have to agree with Gary...schedule your life around your headaches! To let these control you is to give over too much of the precious time we have here on earth. Yup, they hurt...a lot. But as you're learning, they are manageable. Many of us have been in your situation, working, spending time with family, even going to school. I've been chronic for 24 years now and still managed to complete 4 degrees (BA, two Masters and a doctorate) while the Beast does his best to shoot me down. O2, energy drinks, trex, prednisone intervention, all are at your disposal. Just be sure to add a portable tank (700 liters) to your at-home tank (upwards of 1700 liters) and you're good to go. Never leave home without it. As to the prof and exams, it's law school. They almost have to provide for you an alternative to in-class exams (a private room) so you can huff O2 if you get a hit. Talk to the Dean; I'm confident arrangements can be made. A note from your doc wouldn't hurt, either. Blessings. lance

Title: Re: New here, with a question (and gratitude)
Post by rad60 on Feb 24th, 2011 at 6:31pm
Thanks for the replies. Great info. Portable O2 will be on the top of my wishlist.

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