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Butterbur (Read 5884 times)
Thistle
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Butterbur
May 1st, 2011 at 2:18pm
 
I am new to this site after realizing I have cluster headaches and not migraines.  Every 18 months I get a 4-6 week spell, that comes out of nowhere and receded into nowhere.  During that time I have 1-3 attacks a day, most ranging 9-10 on the Kip scale.

Imitrex is the only thing that has ever helped me, but what a pain to get, it's prohibitively expensive and the whole potential heart side affects are scary.

Long story short, I tried Butterbur a few days ago.  I have had 3 nights of level 2 or 3 headaches, which feel more like a sinus headache.  The vein in my head is still visible, there is a definite shadow of the headache, but I am not writhing, screaming or crying.

Since I have tried everything - over the counter, prescrip, lifestyle changes, herbs, meditation, deep breathing, holding my breath - and this is actually helps, I don't know what to think.  If it were a case of placebo or mind over matter, none of us would be on this website, least of all me.

I'm too afraid to believe I may have found something, but on the other hand I want to sing from the rooftops that I may have actually found something.

Has anyone else used butterbur?  What were the results?
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Thistle
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Re: Butterbur
Reply #1 - May 3rd, 2011 at 12:28am
 
Thanks for your reply!

Butterbur CAN be liver toxic, mainly if the alkaloids aren't removed.  The brand I take is certified alkaloid free by German testing.

It was interesting as I read on webmd that butterbur MIGHT be toxic to the liver that there was an advertisement for some asthma medication which main side effects were (among the many dozens listed) an increased chance of hospitalization or death from asthma. 

Death by cure is ok as long as a medical doctor prescribes it seems to be the way of american healthcare. 

I figure if I can use butterbur to control an episode, then I have an average of 12-24 months for my liver to clean itself up before needing them again.

At this point for me, liver damage is nothing compared to 3 weeks of multiple 8-10 level headaches, surrounded by a couple weeks of 6-8 level pain.  I've had some other health issues of late, and haven't been able to work much, this episode couldn't have worse timing.

I thought 'what the hay' I'll try it, and have had really only shadow headaches since.  Then I tried to take a nap today - bad idea.




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Bob Johnson
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Re: Butterbur
Reply #2 - May 3rd, 2011 at 10:42am
 
It's an old treatment for migaine but I've never seen it mention for Cluster.

Your fear of Imitrex is misplaced. All of the safety evaluations have set aside any major concerns.

Search of PubMed in 3/09 found no abstract later than 2004 and none specific to Cluster Headache.
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Neurology. 2004 Feb 24;62(4):563-8.
Triptans in migraine: the risks of stroke, cardiovascular disease, and death in practice.

Hall GC, Brown MM, Mo J, MacRae KD.

Institute of Neurology, University College London, UK. gillian_hall@gchall.demon.co.uk

BACKGROUND: Triptans are widely used to treat migraine but have been associated with stroke, myocardial infarction (MI), and ischemic heart disease (IHD) in case reports. OBJECTIVE: To estimate the incidence of stroke, cardiovascular events, and death in a migraine cohort, stratified by triptan prescription, and investigate whether the risk of these events was increased in those treated with triptans. METHODS: Migraine patients and matched nonmigraine control subjects were identified from the General Practice Research Database. Computerized records were searched for triptan prescriptions, stroke, TIA, MI, IHD, death, arrhythmia, and confounding variables. Incidence rates were calculated and migraine groups compared with controls using a Cox model, adjusting for confounders. RESULTS: Of 63,575 migraine patients, 13,664 were prescribed a triptan. There was no association between triptan prescription and stroke (hazard ratio [HR] 1.13; 95% CI 0.78, 1.65), MI (HR 0.93; 95% CI 0.60, 1.43), or other outcomes studied. The larger group of migraine patients not prescribed a triptan had an increased risk of stroke (HR 1.51; 95% CI 1.26, 1.82) and IHD (HR 1.35; 95% CI 1.18, 1.54) and a decreased risk of all-cause mortality (HR 0.72; 95% CI 0.65, 0.80). CONCLUSIONS: IN GENERAL PRACTICE, TRIPTAN TREATMENT IN MIGRAINE DOES NOT INCREASE THE RISK OF STROKE, MI, CARDIOVASCULAR DEATH, IHD, OR MORTALITY. TRIPTANS ARE PRESCRIBED TO THOSE LESS AT RISK OF THESE EVENTS.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14981171 [PubMed ]
=======
Number of us have had excellent results with this med. As fast acting and lower cost per dose.

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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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Bob Johnson
 
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Bob Johnson
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Re: Butterbur
Reply #3 - May 5th, 2011 at 11:09am
 
Was looking at some old messages and found this one:

I knew a man in N.C. who died at 75 never having a water heater in his house. Why? Because his grandmother's heater exploded (when he was a young kid) and he never trusted them again.

The second leading cause of cancer deaths in men is prostate cancer, although it's quite curable when men allow themselves to be diagnosed and treated.

My point is this: decisions about medical treatments are fraught with human issues and technical/medical considerations which make easy and simple decisions--which are also judicious decisions--increasingly difficult.

As the number of meds & treatments have multiplied and become more potent and effective, the more side effects we have to be aware of and learn how to manage--if we want the benefits they offer. It's simply an illusion to expect high levels of both effectiveness and freedom from side effects: it's just not in the cards. (More than one science type has commented that aspirin would never pass the FDA licensing process were is coming out today: too many side effects.)

I have the perspective of age to remember when major surgery was used to treat infections because antibiotics didn't arrive until I was just getting out of grammar school! Perspective is hard to develop and especially so when dealing with a complex area out of our common experience, e.g., medicine. We do have some good sources of information which only became readily to hand with the advent of the WWW. BUT even these resources can be a problem when we don't know the quality of the information or have the skills/experience to interpret what we find.

Over the years of reading messages here I've often been anxious about the readiness of folks to manipulate drug doses, play with combinations of meds, and not reporting problems to their docs--and blow off a med as bad/useless. Even the most conscientious consumer will have some problems; the ignorant and flippant are setting themselves up for trouble.

In the end, we are all confronted with trying to strike a balance between benefit and potential cost (cost being $, side effects, and degree of effectiveness). But I'm not about to give up on modern medicine because half a life time ago the picture was so limited and even grim!
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Thistle
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Re: Butterbur
Reply #4 - Mar 16th, 2015 at 1:37am
 
4 years after this original post, I am in my first spell of headaches.

I had not gone more than 18 months without an attack for 20 years, until I tried butterbur.

the first headache this time showed up the usual time, season, etc. I immediately took 2 butterbur. I am still in an attack - I have some eye drooping, some pain and sensitivity in the zone - but NO HEADACHE.

We all know this isn't mind over matter, placebo, and there is nothing anyone of us would do to never go through this again.

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