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New Member! (Read 738 times)
Edenmtclusterhead
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Mar 28th, 2012 at 8:36pm
 
Hello everyone! My name is Gloria and I am so thankful for your site. I recently posted on the supporters board but I think I was supposed to post my introduction on here first. I am a supporter to my long time boyfriend Jason. We've been together for nearly nine years and he's struggled with the clusters for all but 2 of them. I guess he had the clusters before he met me but he didn't know what they were.   Jason and i have just returned home from the Dartmouth Hospital in New Hampshire where he was hospitalized for his cluster headaches that were not responding to home medications.  Jason was put on Iv DHE for three days and then released. We were so excited to get a break but by the time be drove home (2 hours) the clusters had returned.  Cry 
Jason has been on numerous medications and treatments I will try and list them all here....lets hope I can remember them
Depoket, Namenda, Prednisone, vistaril, zomig imitrex lithium, verapamil, occipital nerve blocks (they never worked) Oxygen, acupuncture, percocet, oxycontin, maxalt, amitriptyline, hydroxyzine, cyproheptadine,frova wheww I think thats all of them. 

Currently he's on Verapmil 360/day, lithium 900 mg/day and summavel needle-free delivery system (which he won't use because it hurts too much). Jason is also doing acupuncture and MFR. Oh and of course we use a boat load of O2 which is moderately helpful.

I am so happy to have found this site as I am looking for other options. He had 8 clusters the other night and I thought he was going to bust out the wall. We both are at the end of our rope and the lack of sleep is not helping. I know I feel very emotional due to the lack of sleep and the feeling of hopelessness. I would like him to try the vitamin D and fish oil capsules though so that has given me some hope.

I am very shocked at how many medical personell do not know about clusterheadaches!  I am a nurse and I've been talking about Jason's cluster headaches with so many collegues and they think they're the same as a migraine or a simple headache. Listen, I get Migraines with aura  and clusters are not the same!  Yes, My migraines are aweful, i vomit and take multiple meds etc but the multitude of attacks a clusterer gets in one day, a week, etc is so overbearing! Also the lack of sleep that a person gets is just horrifying! 
I'm not sure where I was going with this and I know I'm rambling but I've been waiting for some place to dump this where people would actually understand. Undecided
Thank you!
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« Last Edit: Mar 28th, 2012 at 8:39pm by Edenmtclusterhead »  
 
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Bob Johnson
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Re: New Member!
Reply #1 - Mar 29th, 2012 at 9:08am
 
Is Jason scheduled for a follow-up visit? The present Verap dose is rather low. Wonder if the docs plan to increase it after a trial.
===
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.
====
Wonder if his technique for using the injection is an issue. If the pain is truly unacceptable then he can shift to the auto-inject (needle) unless you can teach him to use a standard syringe.

Was he discharged with a Rx for short term steriod? That will break a cycle within hours and the Verap/Lithium begins to take hold.

See the PDF file, below.
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« Last Edit: Mar 29th, 2012 at 9:10am by Bob Johnson »  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

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wimsey1
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Re: New Member!
Reply #2 - Mar 29th, 2012 at 9:18am
 
Oh my goodness, Gloria. It sounds like me! Anyway, Bob's right. The verapamil dose is a little low, maybe a lot low. I'm on 640mg/day and that helps a lot by reducing my hits to 2-3x/day rather than 6-10. Curious about your experience with O2. You said the help was moderate but I'm not sure what that means. Moderately helpful in reducing the intensity or frequency of attacks? I don't think anyone claims O2 will reduce the frequency of hits but rather it is the most effective nonpharmaceutical abortive around. If you use it properly. And many do not. You need high flow (25lpm+), a nonrebreather mask (critical so you only get 100% O2) and a breathing technique that promotes hyperventilation. You may already know all of that, but in case you didn't. I am praying Jason will find relief soon, and you will get some sleep. Thank you for hanging in there with him. It gets lonely in that pit of despair. God bless. lance
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Edenmtclusterhead
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Re: New Member!
Reply #3 - Mar 29th, 2012 at 4:51pm
 
Bob and Lance- Jason's blood pressure is on the borderline of being too low right now...I believe this is why his verap dose is so low...they did just increase it though.  The O2 helps abort the attacks some of the time but our regluator only goes to 15 liter/min. He does use a non rebreather mask. I did read the articles on O2 on the site and found it very helpful. Your right it is def not a preventative. He just went back to the hospital today and they are putting him on Migrinal nasal sprays as an abortive and magnesium. We'll see what happens. Thanks for your support
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wimsey1
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Reply #4 - Mar 30th, 2012 at 8:13am
 
I have had good luck alternating Migranal with Imitrex...carefully, not in the same 24hr period. I think it has helped reduce the chance that I will build up too high a tolerance to either. At 15lpm O2 does work just as you say, moderately well. At higher flow rates, it is extremely fast and effective. Just somethin' to think on. Blessings. lance
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Edenmtclusterhead
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Reply #5 - Mar 30th, 2012 at 8:25am
 
Thanks Lance...do you have any place that you recommend buying a regulator that goes that high?  If I try to get one near here its like 150 to 200$ and we just bought this one. I mean we'll do whatever it takes, but I was just hoping to make the jab to the wallet hurt a little less.  We had a full nights sleep last night  Grin I woke up so happy to go to work. He was still sleeping when i left. They are having him try melatonin again also. I hope tonight we don't pay for it.
Best,
Gloria
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Guiseppi
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Re: New Member!
Reply #6 - Mar 30th, 2012 at 9:34am
 
My wife peruses e-bay and craigs list. Grabbed me one that goes up to 65 LPM for $20.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Edenmtclusterhead
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Re: New Member!
Reply #7 - Mar 30th, 2012 at 5:59pm
 
Thanks, I'll check it out
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Reply #8 - Mar 30th, 2012 at 8:32pm
 
Hi Gloria,

I was treated twice at Dartmouth Hitchcock for clusters. I saw Dr. Thomas N. Ward. If he's still there he's well versed in clusters and treatment.

Just a suggestion...
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Edenmtclusterhead
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Reply #9 - Mar 31st, 2012 at 11:07am
 
Yes, Dr.Ward is who he was admitted by and he was the person who put him on the DHE treatment. Thank you...he does know much about cluster Ha
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