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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Cluster Headache Help and Support >> Getting to Know Ya >> Hello from the Northern CA Mountains http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1255747771 Message started by ryanpressler on Oct 16^th, 2009 at 10:49pm

Title: Hello from the Northern CA Mountains
Post by ryanpressler on Oct 16^th, 2009 at 10:49pm

Hey all im Ryan im a 24 year old CH sufferer.I live in the Colfax area, im engaged and in school to be a Nurse.I also work part time in Research and Devolopment for heart pumps. Well heres my CH history. I guesse they run in my family. My dad has had them for 30+ years and his brothers both have them. Been getting clusters now for about three years. Got diagnosed last year.

I had been fighting them fine without medicine but then about two weeks ago I was heading into work at 6am and I got the twinge. It got bad fast. IN ten minutes my right eye was shut I could not breath through my nose and im fairly certain I was sweating out of my eye but it was tears. I got to the back door but I couldnt get my key in the lock so I started ringing the bell. Luckly my dad works thier as well and found me. I got into my office and went dark for about an hour. My dad gave me his Imatrex injection and in about twenty minutes I could function again. Then yesterday at school totally out of the time frame I got hit again. Nothing worked, not even my injections. I got into my car and started crying and screaming so no one would hear me. The security gaurd heard me :D

I got one today again at work but the Imatrex worked. Im going to my Neurologist next week to figure out why it didnt work, that sucked. Luckly for me I have a supportive family seeing as my mom watched my dad go through it for thirty plus years and now my wife to be see's it. She cares enough to help me. My friends make fun of me :P. Except for one who also gets them. He just smokes pot. Im a lab tech I cant do that LOL.

Sorry for the chapter of my last week, im bored and got nothing else to do tonight. Oh I get two a day HOWEVER my night time episode is much much much less than the ones in the morning. I started to get one tonight about an hour ago and I took my Imatrex nasal spray then I ran balls out on the tredmill. went away in about five minutes. Anyone else has anyluck doing extreme exsersice?

Title: Re: Hello from the Northern CA Mountains
Post by Bob_Johnson on Oct 17^th, 2009 at 8:44am

I presume that you are using a preventive with adequate dosing??? Or time to change it to another one to see if better results....

Since it's not possible to predict which individual will respond to an abortive and, over the years, we have reports here and in the medical literature about a med stopping being effective after long periods of success--time to reconsider a vacation from Imitrex???

Number of us have had good success with zyprexa and it has the advantage of being a pill--so easy/fast to take at work, on the road, etc. Might get a sample and try it. A couple of doses should indicate whether it works for you.
---------

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.

Title: Re: Hello from the Northern CA Mountains
Post by lorac on Oct 17^th, 2009 at 9:00am

Welcome Ryan.
read up, and you'll find the answers here,,,Bob is the greatest, he has helped us all a lot.

hope you get it under control soon. lorac

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 9:14am

Quote:

My dad has had them for 30+ years and his brothers both have them.

That strong of a genetic component is extremely rare. This is the first time I've ever heard of that many people so closely related having CH.

Have you thought about donating your family to science? ;D

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 9:49am

Thanks for the info on Zyprexa, I'm probably going to make it into town briefly today and I might be able to stop by the walk-in clinic and ask for a trial prescription for this, just to see if its effective for me. Would you recommend printing out the study to take to a doctor to show them that its shown itself to be effective for this purpose? And do we know anybody here who is currently using it as an abortive, my one worry is the "sleepiness" side effect, I'm just curious as to whether it makes you drowsy after taking it or is it like taking an anti-depressant where it makes you drowsy even after you sleep?

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 10:00am

Quote:

Would you recommend printing out the study to take to a doctor to show them that its shown itself to be effective for this purpose?

Tar - Doesn't that question sort of answer itself? Leave it in your pocket if it's not needed.

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 10:04am

I only ask because my printer is extremely low on ink, its the reason I'm going into town later actually. but I should be able to get the one page out without problems, is there a link to where that info came from or should I just copy & paste it as it was posted?

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 10:10am

You'd have to ask Bob about that.

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 10:15am

Found it, sometimes easier to ask and start looking that just to ask and wait for an answer. For anybody else wondering where it came from its one of the studies listed on OUCH's website at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

END PRINTPAGE

I wasn't sure if it was a completely copy/paste of the info but apparently it was

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 10:32am

God helps those who help themselves. ;)

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 10:40am

current plan of attack will be to ask for a trial prescription of the Zyprexa and perhaps the Migranal nasal spray as a back up just in case that doesn't work, another night at work with this is just going to be too much, and I'm going to end up overdosing on OTC painkillers one of these days (and no they aren't very effective but they do let me function for a little while, just taking a very unsafe level at the moment)

Title: Re: Hello from the Northern CA Mountains
Post by Bob_Johnson on Oct 17^th, 2009 at 2:02pm

Rx if you must but so many docs have samples in their "free closet" that should not have to pay.

Personally, I have never had an issue with sleepiness; one woman, here, did and cut the dose to 2.5mg and it worked. This side effect is likely for those taking daily/multiple dosing vs. the single one we need.

I've found it so effective that an attack is aborted in 20-minutes with such rapidity that it's like throwing a light switch!! My first dose made me a convert... (AND it's cheap compared to the triptans.)
======
Since you're into medical lingo, really suggest this one:

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....")

And here is the author's web site (Robbins, 2nd item). Worth med literature in a somewhat messy search function.

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)

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

END PRINTPAGE
============================================

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

END PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 4:47pm

The doctor I ended up seeing today has actually treated clusterheadaches in the past, he was a little hesitant on prescribing the zyprexa and didn't have any in his sample closet, but I did atleast get the DHE nasal sprays so that combined with the RC seeds I have coming next week should help a lot.

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 5:10pm

A doctor's comfort level and your pain level are measured on two different scales. Be sure you always put your foot down diplomatically with these guys.

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 5:28pm

As he's not my family doctor I can understand some reluctance in prescribing treatments for off-label use, but he did say if the migranal isn't effective to come back and see him and he'll try the zyprexa with me, but this has shown a bit of promise in the past, not 100% but still better than nothing.

Title: Re: Hello from the Northern CA Mountains
Post by Weatherman on Oct 17^th, 2009 at 5:40pm

Tar wrote on Oct 17^th, 2009 at 4:47pm:

I'm not a seed guy but don't you have to be off all meds for them to work?

Title: Re: Hello from the Northern CA Mountains
Post by Brew on Oct 17^th, 2009 at 5:53pm

Weatherman wrote on Oct 17^th, 2009 at 5:40pm:

Tar wrote on Oct 17^th, 2009 at 4:47pm:

I'm not a seed guy but don't you have to be off all meds for them to work?

Yep. Minimum of 5 days.

Title: Re: Hello from the Northern CA Mountains
Post by Tar on Oct 17^th, 2009 at 5:59pm

Not really sure on this one myself, essentially I'm planning on only using the DHE for relieve while I'm working as the potential side effects are a bit less severe than the RC seeds, but the main active incredient of the two is pretty much the same, DHE=dihydroergotamine mesylate and the active component in RC seeds is ergine (an ergoline alkaloid). As long as I'm not taking the two together I can't see the harm in using one when I need to be able to function and the other when I have days off and can afford to possibly not be in a frame of mind to work.

Title: Re: Hello from the Northern CA Mountains
Post by ryanpressler on Oct 18^th, 2009 at 1:51pm

Brew wrote on Oct 17^th, 2009 at 9:14am:

Quote:

My dad has had them for 30+ years and his brothers both have them.

HAHA my whole family is a medical wonder. Actually my dad and his brothers are in some genetic experiment. Honestly they are.

Yeah, it is frustrating for the whole family. CH almost killed one brother he started taking pills Oxicontons cause he was desperate to stop the pain. He took about 30 a day until he flat lined during Thanksgiving. I was a firefighter at the time and started CPR then the ambulance crew arrived and got a pulse going, AMR paramedics are good. No rhythm and they got one.

Yeah I have been fighting with my insurance. My current doctor is good but he will admit his knowledge on CH is fairly low. Im in the middle to of switching to my dad doctor who is REALLY good with them and he is good at fighting with insurance company's to make sure you get the medication you need and the right amounts to help get you through a bad period, which I seem to be in.

Title: Re: Hello from the Northern CA Mountains
Post by ryanpressler on Oct 18^th, 2009 at 2:00pm

Bob Johnson wrote on Oct 17^th, 2009 at 8:44am:

I have not had experience with preventive. Only abortive, my doctor gave me Mitral which made them worse at an alarming rate. Like I said my current doctor is good but not that great with CH. But im switching back my dads neurologist and primary care doctor on Monday to hopefully get some treatment.Ill mention Zyprexea to my doc when I see him again. Ill also ask one of my teachers, ( a pharmacist) what he knows about it and anything he can offer to help prevent them.

Title: Re: Hello from the Northern CA Mountains
Post by Bob_Johnson on Oct 18^th, 2009 at 4:49pm

Hope you printed the two links (early response) giving lists of current treatments. I would give to your doc along with a copy of this article (link on 2nd line).

===========

Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Title: Re: Hello from the Northern CA Mountains
Post by Bob_Johnson on Oct 19^th, 2009 at 8:28am

This is the most commonly used preventive; has been around for a long time and has a well established 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).