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Son of a CH (Read 1577 times)
mmayo
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Son of a CH
Nov 23rd, 2009 at 12:31pm
 
Hi all,

I'm 19 years old, my father got his first headache in 1990 when I was less than a year old. My family has dealt with this all of my life. I'm joining this group in the hopes that I might be able to arm myself with a little more knowledge about what has worked and what has not for some of you over the years. It feels like we've tried every possibility, you name the drug he's been on it; Demerol, Topamax, Lidocaine, Imitrex, oxygen, the only one which helps is imitrex. We've been to the top doctors and neurologists and so many clinics, and they all say he's possibly the worst chronic case they've ever seen or heard of. He left just a few hours ago with his sixth headache of the day after using the last of the shots he got yesterday (it's noon here...) and he's on his way to the emergency room to force them to admit him for a steroid procedure over the next few days. I've got a few questions for those out there in the same position as him who may have had luck with other medications. I'm especially intrigued by the theories on vitamin-D and testosterone deficiencies, as we've quite literally run out of options. How many people out there has taking supplements for these helped? The imitrex fix was nice while it lasted, but when he enters a bad spell of headaches they really don't last. He's been getting roughly 10 headaches a day, each of which lasts about 45 minutes untreated. We need to find additional treatments that will at least lessen their frequency if not their strength.
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angela.lambert
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Re: Son of a CH
Reply #1 - Nov 23rd, 2009 at 12:47pm
 
Dear MMayo,
I, fortunately, am episodic.  I can only take my worst day and times it by 365 to understand how a chronic suffer feels.  I have the up most respect and sympathy for them.
You are a strong kid to watch your father like that for 18 years. And then your father is even stronger.
You came to right place, be patient, and some really good advice will come your way very soon, promise.

To make your father's imitrex last longer, read this:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Wishing your family PFD! (pain free days)
Angela
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mmayo
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Re: Son of a CH
Reply #2 - Nov 23rd, 2009 at 12:55pm
 
Thanks Angela. I actually discovered that guide to making imitrex last longer this morning, and mentioned it to my mother. Unfortunately I never made the connection between the potency of imitrex and the effectiveness it has on my father. There's been times when it just simply did not work for him, and my mom claims that it has to do with the most severe headaches he gets. I fear that using a fraction of the injection won't work very often given his state.
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angela.lambert
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Re: Son of a CH
Reply #3 - Nov 23rd, 2009 at 1:15pm
 
I agree that your father has intense and unshakeable CH's, but if the 2mg doesn't then try 2mg more.  If a fraction can work, then a fraction is saved.

Sometimes the Imitrex doesn't work for me either, or I get those nasty rebound headaches.  Then I just have to ride the headache out (say's the episodic sufferer).

Hang in there, some one more familiar with chronic CH and who has tried more options than me, will be by.
Angela
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mmayo
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Re: Son of a CH
Reply #4 - Nov 23rd, 2009 at 1:34pm
 
I'm definitely going to push my father to try smaller dosages, however I don't think it's going to make much of a difference. I don't mean to sound unappreciative, it's just that the last time my father has a decent calm period (only getting a few headaches a week) we took advantage of this opportunity with our current insurance and refilled his Imitrex as often as possible. As a result, he went into Summer 2009 with quite literally over 100 Imitrex injections on reserve in our safe...he used all of them before the end of the Summer, and I watched him suffer through two or three for every one that he used an injection on, in hopes of making the medication last longer. It's obvious that this behavior is neither cost effective nor healthy in the slightest, and it's just not an option any longer. I'm a serious supporter of the Imitrex injections, they work absolute wonders on cluster headaches individually. It's just not an option for us any longer and I'm really just searching for the next medication we can try.
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Bob Johnson
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Re: Son of a CH
Reply #5 - Nov 23rd, 2009 at 1:43pm
 
As of 5-min ago, this is the latest report on the topic. Clearly, not an intense area of search yet....

Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 
=====================
I've seen, in just the last few weeks, a couple of reports trying this med as a preventive as well as an abortive. As an abortive, a number of us find it 100% effective.

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

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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.
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« Last Edit: Nov 23rd, 2009 at 1:50pm by Bob Johnson »  

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mmayo
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Re: Son of a CH
Reply #6 - Nov 23rd, 2009 at 1:50pm
 
Thank you so much for this information, this is exactly what I need to start finding!

Neither of those drugs sound familiar to me, and my dad has had limited or no luck with ALL of the drugs that those patients reported did not work for them, so this is very promising. I'm also not deterred by the antipsychotic uses, so if you know of any others like that please let me know. We've been down that road before, Topamax caused my father to drop 45 pounds in less than 6 weeks and a very real and frightening mood change for the worse. Nevertheless I am open to any and all suggestions  Smiley

EDIT: My fault, just asked my mother and apparently my father tried Zyprexa with very limited results.
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« Last Edit: Nov 23rd, 2009 at 1:54pm by mmayo »  
 
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Joni
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Re: Son of a CH
Reply #7 - Nov 23rd, 2009 at 2:19pm
 
Has he tried Verapamil as a preventative?  It takes awhile to work, but many have good results.  I guess my next question would be to ask how long of a trial and at what doses did all of these medications/treatments fail?  Is his blood pressure running too high...that kept me in a worse shape one time with my headaches and it was amazing that treating that helped my head so much!  All the pain had made my blood pressure high and I didn't know it until my internist caught it.  I also don't remember now if you mentioned he had tried Prednizone.  That would be my last resort, but it sounds like he needs a last resort.

Good luck!
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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mmayo
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Re: Son of a CH
Reply #8 - Nov 23rd, 2009 at 2:34pm
 
I'm not sure about doses, but he absolutely tried verapamil for an extensive period of time. In fact a few minutes ago my mother and I went through the box of all his failed medications, and he has tons of excess verapamil because of how poorly it ended up working
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Joni
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Re: Son of a CH
Reply #9 - Nov 23rd, 2009 at 2:47pm
 
Sorry, I'm out of ideas.  I am episodic, though I have had the frustration with medications as well.  I see now that he is going to the hospital to get steroids (Prednizone).  Surely that will help.  I have to be really careful tapering off of them as to not start another round.  Seems to me like he needs a preventative to kick in after the steroids wear off/taper off.  It is difficult for me to believe that Vit D will stop his headaches, however, it is very good for you and a lot of people are low.  I am and took an Rx for 8 weeks, then 2000iu every day since.  It didn't affect my recent cycle, though, I had a whopper anyway.  Maybe others on here can help you.
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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mmayo
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Re: Son of a CH
Reply #10 - Nov 23rd, 2009 at 3:09pm
 
Thanks for the suggestions anyways. I'm still investigating some of them. I'm not sure if he's going in for prednizone specifically as I don't know what is administered in the procedure. He's going in for what is called the Raskin Protocol (or Rascin, not sure) He's done it 3 or 4 times before. The first time we thought we had it, headache free for 5 months, but unfortunately they came back. The next time he literally got a headache walking out the hospital doors, and the time after that he got one 2 days later. Hopefully this time is more like the first, but my hopes aren't very high.
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kevmd
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Re: Son of a CH
Reply #11 - Nov 23rd, 2009 at 10:21pm
 
have to say your dad is lucky to have you.  If you are looking for last resorts, check out clusterbusters.com

Also, I have to say my last cycle was the easiest I ever had and it was WITHOUT anything but O2.

Speaking of o2, let us know EXACTLY how he was using it.  Need the proper flow and proper mask
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mmayo
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Re: Son of a CH
Reply #12 - Nov 24th, 2009 at 1:03pm
 
Well, he stopped using it some 15 years ago, but I'm pretty sure he was using it correctly if that's what you mean. He had the large tanks delivered and then he had a smaller tank that he filled himself from them. My memory isn't the best as I was very young, but I know that initially it was all that helped, and it worked very well. But as the months went by it worked less and less, by the time I was 4 or so it was barely helping at all, and then it just stopped working all together. Some time around then I remember the tank taking a trip across the living room into the wall and that was the last time I saw him use it I think. Like I said he's getting the Raskin Protocol right now, but when he first got to the hospital yesterday they had him in the ER on oxygen for a few hours, and apparently it knocked headaches down to about a 5 which is great. I'm going to suggest that he gets it again because in conjunction with some of the other stuff that "almost" works for him I'm starting to think these might become manageable again.
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Bob Johnson
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Re: Son of a CH
Reply #13 - Nov 24th, 2009 at 1:28pm
 
I'm straining, rooting around the cellar, for a new (old) approach, when I offer this article. But sometimes a new perspective is useful.....
=============

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Title: "Cluster Headache Mimics"--useful article. Post by Bob_Johnson on Jul 30th, 2004, 2:04pm
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This is an important article to obtain and take to your doctor if you are having a difficult time getting a diagnosis of the type of headache problem you have and/or finding medications which give consistent relief for cluster. It is a technically difficult read for someone not educated in medicine. Its value is in providing case studies about uncommon conditions which appear to be cluster headache but which are, in fact, not.

Broad signs which may signal that the problem being treated is a cluster mimic are: having made a diagnosis of cluster, the standard medications do not work OR they work for an episode or two and then stop being effective. Second, if the diagnostic signs differ in important ways from the standard signs for cluster (and this is a subtle issue which requires a physician with sophistication).

One of the striking findings reported: Cluster can arise from head trauma as long as 30-years after the trauma!

Some conditions which can mimic primary cluster headache:

Infections
     Aspergillus
     Inflammatory disorders
     Wegener's granulomatosis
     Orbital myositis
     Plasmacytoma
     Multiple sclerosis
Head trauma
Vascular abnormalities
     Arterial dissections
     Arteriovenous malformations
Neoplasms
     Pituitary tumors
     Metastases
Other trigeminal autonomic cephalgias: SUNCT syndrome; Paroxysmal hemacrania; Hypnic headache

"Cluster Headache Mimics", Dale M. Carter, M.D.. CURRENT PAIN AND HEADACHE REPORTS, 2004, 8:133-139.
(Take this citation to your public library and they can order a copy of the complete article for you.)
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