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A Cluster Head (Read 1158 times)
carlicarr
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A Cluster Head
Jul 4th, 2012 at 1:13am
 
I was diagnosed with Cluster Headaches/Trigeminal Neuralgia August of 2011 and while I believe I have suffered from the headaches for longer than this, this cycle has lasted since about then.  I'm afraid it's turning from episodic into chronic, though my neurologist is hopeful that since it's my first true onset of the disorder, it may just be that we're getting my medications to a place of controlling the headaches.  The pain/swelling was getting so bad at one point that I lost sight temporarily in my right eye.

I am currently taking Topamax, 800mg daily, Verapamil, 540 mg daily and Prednisone, 20 mg daily as preventative medications.  For breakthrough clusters, I take Imitrex injectible, Oxygen @10ml, and Zomig nasal spray.

I am also a very active runner and a full time student, so my schedule keeps me from staying down too long.  Though Cluster headaches dictate otherwise... Last term I had a horrifying attack during a final (where I lost my sight) Not my finest moment. My shadow headaches, while they are nothing compared to the cluster pain, last a very long time, to where I'm almost in a constant state of ache.  It's exhausting.  The Topamax dose I'm on finally seems to be doing some sort of good but I'm losing quite a bit of weight, and I'm already a very lean athlete, so I may have to switch to another medicine if I can't keep my weight up.  The prednisone dose I'm on right now is to attempt to kick the current cycle I'm in, but it's a temporary situation, as my neuro doesn't want me to be on steroids for long term.  I don't want that either, as the long term implications for steroids are negative on ones body, but for now, I can say that the prednisone has had the best results with the head pain. 

So, that's been my experience so far.  I know I will deal with this disorder for the rest of my life, so I though it was time I reached out to a support group of individuals who know how it feels to literally want to run away from your own head... I have felt like a lunatic sometimes, in my attempts to explain myself and my pain to others who haven't experienced what I am currently going through. So, thanks to anyone out there who may be reading this. It's appreciated.

-C Undecided
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« Last Edit: Jul 4th, 2012 at 1:16am by carlicarr »  
 
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Bob Johnson
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Re: A Cluster Head
Reply #1 - Jul 4th, 2012 at 8:25am
 
I'm not being critical of your neuro but offering, only some contrast about the treatment plan you are on.

1. Running. Look for the message on heat as a tigger. Sadly, if that's a issue for you then your running becomes an issue. Easy to try using 1 mg melatonin before running and see if this helps block an attack.

2. The Verap dose is almost 1/2 of the max. which is used for Cluster.
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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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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.
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3. Re. Pred. Commonly we use a high starting dose (as much as 100mg) quickly tapering off as you start using the long term preventive, ala Verap. Experience shows tha this high dose usually kills the attacks within days vs. taking a lower dose for longer periods.

4. Using two forms of triptans to abort raises a red flag for the potenial of creating rebound attacks. Suggest you talk with the neuro about total daily dosing when using both meds.

5. Suggest you print out the PDF file, below, and use it as a tool to discussion treatments with the neuro. His response will be informative.

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« Last Edit: Jul 4th, 2012 at 8:26am by Bob Johnson »  
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Bob Johnson
 
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Re: A Cluster Head
Reply #2 - Jul 4th, 2012 at 11:26am
 
Welcome to the board, so glad you found us. The oxygen is great but the flow is WAY low, we preach a minimum of 15 LPM with many not geting relief, or fininding MUCH faster aborts at 25 to 45 LPM. Personally, I use a demand valve so i can breathe as fast and deep as i want. Read this link for details on the 02. I hope he at least has you on a Non Re Breather Mask as 100% oxygen is the key to a fast abort:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

He is 100% correct on the prednisone, a great transition drug for temporary relief while a prevent, like topomax or verapamil builds up. But long term use ravages the old body.

Go to the meds section of this board and read the post "123 pain free days and i think I know why." A simple vitamin and anti inflammatory regimen that's providing a lot of relief to CH'ers who try it. Pennies a day, good for you even without CH, worth a look see.

Start reading this board like crazy, knowledge is your best ally against CH. I've had them about 34 years and they haven't killed me yet? Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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