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CGrace

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Desperate Supporter
Oct 23^rd, 2009 at 11:58am

Im hoping someone here may have a solution because I am feeling mighy helpless.

My husband has been suffering clusters for I dont remember how long. At least a decade. Hes chronic, averaging two-three a day. I can count on one hand how many remissions hes had, and those have never lasted more than three days. Hes just upped his dosage of Gabapenton, and they have actually increased. Hes been experiencing clusters every eight hours that seem to be completely resistant to meds or Redbull.

My poor husband is fantasizing about blowing his head off. Please help us.

He splits his Imitrex pills to stretch them out, but always runs out before our insurance will refill the script. This scares him to death and I dont blame him. Injections did nothing. We finally found a nuero that would prescribe oxygen, but not the amount advised on these sites. Our insurance wont pay for oxygen, and we cannot afford it without insurance. Redbull has recently quit working all together. He has tried a long list of preventatives and painkillers that either do not work, or trigger his severe anxiety disorder. Gabapeton was the first to look promising. He experienced actual relief for the first time ever. Im pretty sure he even had a day with no headache. As the clusters started coming back, the neuro upped the dose, and now theyve come back with a vengeance.

I feel so helpless! All I can do is watch my husband cry. There has to be a way to help him!! He a shell of the man he once was. Hes angry and distant all the time. He wakes up with headaches, they disrupt his work, he comes home with headaches, they keep him up at night, and then they wake him up again in the middle of the night. This is a typical DAY.

Im out of ideas & options. Im really beginning to freak out here. What else can I do?

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« Last Edit: Oct 23^rd, 2009 at 11:59am by CGrace »

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Potter

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Re: Desperate Supporter
Reply #1 - Oct 23^rd, 2009 at 12:03pm

CGrace wrote on Oct 23^rd, 2009 at 11:58am:

Im hoping someone here may have a solution because I am feeling mighy helpless.

My husband has been suffering clusters for I dont remember how long. At least a decade. Hes chronic, averaging two-three a day. I can count on one hand how many remissions hes had, and those have never lasted more than three days. Hes just upped his dosage of Gabapenton, and they have actually increased. Hes been experiencing clusters every eight hours that seem to be completely resistant to meds or Redbull.

My poor husband is fantasizing about blowing his head off. Please help us.

He splits his Imitrex pills to stretch them out, but always runs out before our insurance will refill the script. This scares him to death and I dont blame him. Injections did nothing. We finally found a nuero that would prescribe oxygen, but not the amount advised on these sites. Our insurance wont pay for oxygen, and we cannot afford it without insurance. Redbull has recently quit working all together. He has tried a long list of preventatives and painkillers that either do not work, or trigger his severe anxiety disorder. Gabapeton was the first to look promising. He experienced actual relief for the first time ever. Im pretty sure he even had a day with no headache. As the clusters started coming back, the neuro upped the dose, and now theyve come back with a vengeance.

I feel so helpless! All I can do is watch my husband cry. There has to be a way to help him!! He a shell of the man he once was. Hes angry and distant all the time. He wakes up with headaches, they disrupt his work, he comes home with headaches, they keep him up at night, and then they wake him up again in the middle of the night. This is a typical DAY.

Im out of ideas & options. Im really beginning to freak out here. What else can I do?

Bout three hundred bucks out of pocket for welders oxygen. Seems pretty cheap compared to offing yourself.

Potter

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Bob Johnson

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Re: Desperate Supporter
Reply #2 - Oct 23^rd, 2009 at 12:34pm

In the absence of much information about past treatments I can only offer a couple of generic recommendations.

First, many neurologists lack training/experience in treating complex headache disorders. Suggest you seek a headache specialist.
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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

or

On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. Call 1-800-643-5552; 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.
=======
Here are a couple of lists of the most commonly used meds for cluster.

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

or

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

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=========

Imitrex PILLS are the least effective form of this med to use for CH and splitting them further reduces effectiveness.

In the meds list, see Zyprexa/olanzapine as an abortive. Much cheaper than Imitrex and a number of us have found it 100% effective as an abortive. The doc can give samples and your husband will know with 1-3 uses whether it works for him. You can print out this abstract and give to the doc as authority.....
----

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.
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« Last Edit: Oct 23^rd, 2009 at 12:38pm by Bob Johnson »

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CGrace

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Re: Desperate Supporter
Reply #3 - Oct 23^rd, 2009 at 12:54pm

Thank you.

Vet is right, $300 is a miniscule amount of money compared to my husbands life. But there are times in life when $300 is simply not possible.

Zyprexa was one of the first preventatives he tried. It triggered anxiety that left him hospitalized. I will put together a complete history and post it later. Thank you for the links.

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Chad

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Re: Desperate Supporter
Reply #4 - Oct 23^rd, 2009 at 1:07pm

This is another option.

Did he ever consider using rc seeds since they seem to help a lot of chronic folks on this board?

It probably won't eliminate them, but it can reduce the amount hits he gets daily and the intensity. Check out Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

for more information. If you're desperate, it's worth a shot, right?

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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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bejeeber

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Re: Desperate Supporter
Reply #5 - Oct 23^rd, 2009 at 5:27pm

Sounds like things could be getting on a good track here with the determination to try o2. I'll agree that even if it takes bashing the credit card a good one, it should be worth it.

I'll also agree with Chad that RC seeds (Rivea Corymbosa) could be worth a try.

They're cheap, 100% natural, and side effect free (from my experience and others, but maybe not guaranteed).

They are legal to purchase and to possess (illegal to ingest). So there's a chance your husband could be arrested if he were to flag down a cop, yell to him "Look! I'm ingesting RC seeds right now, they are illegal, you SUCK, and I dare you to bust me!!!"

You might find it worthwhile to read this recent post from Bonkers, detailing his son's horrible case of CH (the latest update is that after RC, his son is 8 days relatively pain free. This doesn't prove that RC is responsible for the breakthrough, but it does seem encouraging):

Hi all,

I suppose, if we're ever to change the legal status of perhaps the only truly effective therapy for this horrible affliction, that we should heed bobw's admonishment and "stand up and be counted."

This is the first time I've told our story publicly, but I think it's high time we joined the fray. I say "we" because I suffer along with my 25-year-old son Michael as he lays in his darkened room rocking, crying, sometimes screaming through 15-20 hours of every day. I'm 63 and retired so it's no trouble for me to be home to care for him.

His clusters began when he was 12 years old. We thought they were migraines since both my mother and I had them from our mid-teens till our early thirties. She had nothing to help her but by the mid-sixties I had found "Medihaler-Ergotamine" which remained in my pants-pocket till I was 30 and my migraines went away.

Michael was taking a shower when his first cluster struck. Like a lightning bolt, it knocked him to the ground (or rather, to the bottom of the bathtub). Scared the hell out of us! Over the next several years, he would have spells of headaches lasting from a couple of days to a couple of weeks. We tried all the drugs. Took all the tests. He was diagnosed with episodic cluster headaches about 8 years ago. Imitrex, oxygen and the narcotics all worked for varying lengths of time. The rest of them worked very little, if at all.

Then, about 4 years ago, he was involved in a particularly bad car accident where he suffered some head trauma. His headaches became chronic and increased exponentially in severity and duration. The pain was incredible. In the hospital, none of the drugs brought any relief - he was put into restraints and finally, with his neurologist's consent, an induced coma. After a week, when they brought him out of the coma, he seemed improved for a few days. Then they came back. We fired the neurologist and I took him to my pain doctor (I've had 5 vertebrae fused in my neck). He promised not to rest till he had eased Mike's suffering. And he has really tried. But to no avail. He currently has him taking 120mg. of methadone every day and it barely touches the pain.

Michael has what he calls a "background" headache which he carries around 24 hours a day. This "background" headache is interspersed with "spikes" which vary in intensity from the comparatively mild experience of feeling like someone is ripping out one of his eyeballs to that same experience intensifying till a lockjaw-like symptom occurs which precedes an abrupt loss of consciousness which can last from a few seconds to a few minutes. A "spike" usually wakes him about 4 o'clock in the morning. Any number of recurrences typically keep him abed till about 8 at night. He then gets up and watches a movie or two with his old man. Back to bed about 1 in the morning. That's his life. He can't work or go to school. He has no social life. His family's love has kept him from suicide. I respect and admire him more than you can imagine.

Then, a few months ago, I read an article in the journal "Neurology" entitled "Response of cluster headache to psilocybin and LSD." I now consider this article a "must read" for anyone suffering from, or caring for someone suffering from, the awful affliction of cluster headache.

I HAD to try this! I remembered these drugs from my "hippy" days - I grew up in the '60's - and knew that under the proper circumstances they could be taken safely, especially at sub-psychedelic dosages. So I tried to find some. I no longer take drugs recreationally, but I know people. I felt that with the people I know, along with the people my son knows, we were bound to be able to find something. No luck. We tried for nine months and couldn't find anything. Apparently, in Southern California at least, psychedelics have fallen out of favor.

Then, a couple of weeks ago, we got a phone call. Somebody knows a guy that knows a guy that knows a guy. He had heard of our plight and would give us a single dose of LSD for free. Whoopee!! I cut it in half. Michael took that half and we waited. 1/2 hour, nothing. 2 hours, 3 hours, nothing. We figured that he had either not taken enough - he experienced no psychedelic symptoms whatsoever - or that he was one of those people for whom the drug was ineffective.

Then, all of a sudden, Michael sat up, looked at me and said: "My headache's completely gone, background headache and all, completely gone." F___ing amazing! And it didn't come back, not even the background headache. We hoped that he might be one of the lucky ones who take one dose and the monster never returns. But such was not to be. On the fifth day it returned - with a vengeance. He had 5 glorious, headache-free days. He was full of joy and promise and hope. And then they came back. F___!! So far, we've been unable to find more psychedelics. But we will. And we know they work.

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« Last Edit: Oct 23^rd, 2009 at 5:28pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Desperate Supporter Reply #6 - Oct 23^rd, 2009 at 6:07pm As you prepare the history of meds used, it would be helpful if you mentioned the specific response to any given med. Rather than, "it didn' help", mention the specific reaction. As with Zyprexa, you note it aroused anxiety which was quite severe. This kind of info about other meds would be helpful.
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Desperate Supporter Reply #7 - Oct 23^rd, 2009 at 6:13pm Has he ever been prescribed the Prednisone taper with lithium or verapmil treatment? What part of the world are you in?
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bejeeber

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Re: Desperate Supporter
Reply #8 - Oct 23^rd, 2009 at 6:30pm

It would be nice if your husband felt up to coming on here and hanging out some with his fellow CH people, asking questions, getting advice, etc.

Meantime, you're really doing the right thing CGrace, and I think you're getting real valuable info - kudos to you for that!

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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CGrace

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Re: Desperate Supporter
Reply #9 - Oct 24^th, 2009 at 12:56pm

Im overwhelmed by all of your responses. Thank you so much for understanding, caring, and wanting to help. I showed my husband the boards, and we both cried. Its sick, I know, but its comforting to know that there are other miserable ppl out there. My husband, who doesnt even know how to turn the pc on, has agreed to register and visit. Grin

Hes also agreed that 02 is the next definite step no matter what the cost. I guess he needed to hear it from someone else. So thank you for that as well.

The neuro took him off Gabapentin yesterday and assigned him Lithium, which makes me very nervous. Im still working on his med history, but the pattern that sticks out to me is that anything hes taken that could also be given for anxiety .. has brought on anxiety. Whats that about?

Today Im going to begin researching all of the headache clinics in California and hopefully find him a new doc. Ill also finish up this history. BLESS YOU for taking an interest. Im so happy we found this place.

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bejeeber

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Re: Desperate Supporter
Reply #10 - Oct 24^th, 2009 at 8:28pm

CGrace wrote on Oct 24^th, 2009 at 12:56pm:

Im so happy we found this place.

I know that feeling!

This place has truly saved me - I would've been in such a world of hurt and such a bad place during my recent episode without the info and the help from the cluster noggins that inhabit this place.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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