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Hey Everyone (Read 2049 times)
elliott
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Hey Everyone
Jan 25th, 2012 at 10:23pm
 
Figured I would start with an introduction of myself.  My name is Sam, and I'm 21 years old.  I've been creeping on this site and every other cluster headache community for about 2-3 years, they have recently come back and at a very inopportune point in my life and for my future.

Got my first cluster in July of '09.  Googled my symptoms (because the headaches were every day and so painful) and concluded I had clusters.  Verified it with my doctor who sent me to a neurologist who concurred with my diagnosis.

Fast forward to now, just finished wiping the stream of tears from my right eye and am writing this on the come up of a 20mg Imitrex nasal spray.  It's been about 2 weeks since they came back, and til they go away forever you'll likely see more of my posts.

Cheers
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wimsey1
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Re: Hey Everyone
Reply #1 - Jan 26th, 2012 at 7:38am
 
Welcome, Sam. You've already taken the first and best step in dealing with these things: a diagnosis. Question, though: is the imitrex nasal spray the only intervention you have? I ask because even for episodics, it is important to have a longer term preventative in place (verapamil, topamax, lithium, etc) as well as a frontline abortive. The trex spray is better than the pills, but not as good as the injectables. And O2 isn't mentioned at all. Many of us have found the high flow O2 and a nonrebreather mask (25lpm+ and a mask without holes or flaps) can abort a hit in under five minutes. Couple that with an energy drink (one that has at least 1000mg taurine) and I've dropped it to two or three minutes. Glad you're aboard. If you feel like it, why not write about what is working for you and what has not? God bless. lance
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Bob Johnson
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Re: Hey Everyone
Reply #2 - Jan 26th, 2012 at 7:52am
 
Hope you do stay with us but help us get off to a solid start....

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
===============
If you have the option, your best chances for good care comes from seeing a headache specialist.
--
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=============
Print the PDF file, below, and use it to discuss treatment options with any doc you see.




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Bob Johnson
 
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Guiseppi
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Re: Hey Everyone
Reply #3 - Jan 26th, 2012 at 9:03am
 
Welcome to the board Elliott. I'm with Lance, I sure hope your treatment regimen involves more then just the imitrex spray. Suggetions in order!:

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

Read this link, oxygen has all but eliminated my use of imitrex. My aborts average 6-8 minutes, from onset of attack symptoms to completely pain free. Cheap, fast, effective, no side affects, not much to dislike.

Go to the meds section and read the topic "123 pain free days and I think I know why." A daily anti-inflammatory regimen that's getting a lot of people pain free. I'm on it permanently! Wink

Do you use a daily prevent med while on cycle? Something to reduce frequency and/or intensity of attacks? Verapamil is the typical first attempt prevent, I use lithium. Worth talking to the doc.

Finally visit our sister site:

Clusterbusters.com

This site is devoted to treatments outside of mainstream medicine.

JOe
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elliott
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Re: Hey Everyone
Reply #4 - Jan 26th, 2012 at 4:58pm
 
Thanks for the warm welcome guys.  Well like I said I've been lurking on these communities for awhile, and I have explored the options I believed would be practical in my situation.  I'm currently in the military and am slated for special operations tryouts in the coming months, however with the recent return of my clusters the medical board is looking real hard at my files.

Because of my situation, psychedelics and O2 are out of the question, at least for now. 

What has NOT worked for me:
Maxalt 20mg Orally Dissolving Tablets
Caffeine
Any type of OTC pain/headache medication
Hot showers
Imitrex 5mg Nasal Spray
Imitrex 50mg Oral

What HAS worked:
Sleeping it off (good luck actually falling asleep though)
Imitrex 20mg Nasal Spray


Because of cost or risk of long-term use, my medical officer stopped prescribing my Imitrex today and switched to Zomig 5mg dissolvables.  Surprisingly, this worked when I took one during a shadow today.  Tomorrow night I should be able to confirm its effectiveness.

Also, I'm currently located in North Carolina.
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« Last Edit: Jan 29th, 2012 at 7:32am by elliott »  
 
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Guiseppi
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Re: Hey Everyone
Reply #5 - Jan 26th, 2012 at 6:35pm
 
Sounds like you're getting the night time wake up hits. Get down to CVS or Walgrens and pick up some melatonin. It's an over the counter sleep aid. Start with 9 mg about 30 minutes before bed time. May have to adjust the dosing after a few days, up if you're not getting relief...some go as high as 18 mg a night....down on the dose if you find you're waking up in the morning all groggy. Many can avoid the night time hits and get caught up on their sleep.

Talk to the doc about verapamil as a prevent. The idea being to reduce the frequency and intensity of your attacks while in cycle. Here's a link I stole from Bob Johnson:

A widely used protocol. Your doc will recognize the source and author:

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


Joe
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elliott
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Re: Hey Everyone
Reply #6 - Jan 27th, 2012 at 12:41am
 
I have tried the melatonin with no relief, however, I haven't gone past 10mg a night.  I will definitely try adjusting the dose, thanks.

And as far a verapamil, they stated today that they were not going to prescribe me that, it was actually kinda scoffed at.  But what do I know, I just spend ample time researching how to live with these things...

EDIT:  My mistake, the prescription we discussed was Prednisone, not ever close to verapamil.  Will discuss with my doctor and get back.  Thanks.
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« Last Edit: Jan 29th, 2012 at 7:34am by elliott »  
 
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Guiseppi
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Re: Hey Everyone
Reply #7 - Jan 27th, 2012 at 8:54am
 
WOW! That's kinda scary that they'd scoff at what the worldwide medical community feels is the most effective prevent medicine in our arsenal. Damn...... Cry

Joe
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Bob Johnson
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Re: Hey Everyone
Reply #8 - Jan 27th, 2012 at 8:56am
 
If your military doc blew you off re. Verap it says how little he knows about headache/Cluster. IF you didn't do so, suggest you print out the Verap. info Joe sent, give to the doc, and hope he can respect the medical source of this information.

Ditto re. following abortive med. It's cheap, effective, and being a pill, not a problem/conflict with out military duties.
---
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
===
===
Print out the PDF file, below, and give to you military doc. We can only hope his ego will allow him to learn from medical material which he recognizes.
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« Last Edit: Jan 27th, 2012 at 8:59am by Bob Johnson »  
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Re: Hey Everyone
Reply #9 - Jan 27th, 2012 at 7:02pm
 
hey man what branch ya in? why is O2 out of the question. I'm in the Air Force man and let me tell ya, if you do not demand things you want, you will never get them.  The military doctors are absolutely horrible, anything to save a buck.  I was actually given popsicle sticks for back pain one time and told to go home and make ice cube popsicles and rub them on my back...that is a true story......Anyway man, my attacks started when i was about your age and i'm now 27 so dont expect them to go anywhere anytime soon.  At least your being proactive, i'm just starting to really fight them now, i spent way too much time letting them run my life.  I'd like to know how experienced your neurologist was with CHs,  We have a major military medical hospital down in VA so i am sure my neurologist will be military.  Worries me a bit.
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elliott
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Re: Hey Everyone
Reply #10 - Jan 28th, 2012 at 11:09am
 
I'm in the Marines.  My neuro was off-base, and he seemed to be fairly familiar with cluster headaches.  He didn't immmediately assume anything, and definitely didn't scoff or dismiss anything.  And to be honest, regardless of being military or not, I'm sure your nuerologist will tread carefully in this area. 

Good Luck
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