CLUSTER HEADACHE FAQ 
FOR: USENET NEWSGROUP
ALT.SUPPORT.HEADACHES.MIGRAINE
Section IV of IV, Headache FAQ's
VERSION 2.0
Part 3 of 4 

Version 2.0 Written/collated by Bob Wold
Feb/12/00
Rwold42932@aol.com
Some sections Edited by Jack Sandweiss, Research Associate,
California Medical Clinic for Headache, Encino, CA
All rights reserved and copywrited
If you post this to the WWW or Usenet, please inform the 
author, for the purpose of receiving updated versions in the future.

Contents, part 3 of 4 
 8.    Breaking the Cycle
 9.    Pain Medications
 10.  OTC Treatments
 11.  Surgical Interventions
 12.  What's New in Treatments


8  BREAKING THE CYCLE (CYCLE ABORTIVES)
8.1  DHE-45 IV 
DHE-45 IV  3 times a day for 3 days  - along with another IV to
control nausea.    Both times aborted the cluster several weeks
earlier than ever before.    I had used DHE-45 intramuscularly for
several years as an abortive agent with some success -- it's always
difficult to know how effective an abortive treatment is since my
headaches range from 30 minutes to 3 or 4 hours.    Not only did the
intense IV treatment abort the cluster but also seemed to lengthen
the time until the next cluster (25 months now)." - (DG)
IV DHE treatment is a 5 day stay at the Houston Headache Clinic.

8.2 IV Histamine Treatment

IV Histamine treatment has been around for a long time. It has been
theorized that clusters are triggered by histamine entering and
irritating the blood vessels. This treatment involves a hospital stay
and IV treatments requiring  21 bags of Saline and 5% histamine
solution. The theory is to desensitize the blood vessels, to
histamine, by running a low level histamine solution through your
veins for approximately 11 days.
The first time I tried this treatment, it broke my cycle and I was in
full remission for one full year. A new record at that time. The
second time, the cycle was again broken again, but the remission
only lasted six months. The third and final time, the cycle was
relieved a bit, but not broken, and I left the hospital still in a cycle.
This treatment has lost some favor over the years but is still used
frequently. Most recently by this author in January of 2000 with
extremely excellent results.

8.3 Corticosteroid's (Prednisone or Dexamethasone)
(Others in this class include, methylprednisolone (Medrol®) and
Hydrocortisone (Cortef®))
(anti-inflamatory steroids)
Prednisone tablets contain Prednisone which is a Glucocorticoid.
Glucocorticoids are Adrenocortical steroids, both naturally
occurring and synthetic, which are readily absorbed from the
gastrointestinal tract. 

"Finally I tried Prednisone for 1 week, it totally wiped out the
headaches with only residual burning sensation in my temple once
or twice a day for about 10 or 15 minutes." -( RP )

"I took Prednisone for two weeks and had headaches break through
only twice." -( RP )

Also used as a strategy to give more rapid improvement while
waiting for other preventatives to become effective.

If you are prescribed Prednisone, please discuss the dosage
prescribed, and the length of time you will be using it, with your
doctor. Also discuss the number of times allowable to use it within
any 12 month period. You should discuss the very important need to
taper off the medication, with your doctor.

This class of drugs is, and can be very dangerous. They should
never be self-administered or taken "as needed."
I can attest to this. It is very tempting to stay at a high enough dose
to keep the monsters away when you have pills left over to taper
down with, and use them not "as directed."

8.4  Magnesium Infusion
"Treating migraine with magnesium"
More complete information can be found at:
http://pharminfo.com/pubs/msb/headache.html
I know the following report doesn't show statistics on the cluster
sufferers specifically, but many specialists are now trying
magnesium for cluster treatment. This report shows results of
infusion of magnesium through intravenous means, and in attempts
of "breaking" a cycle of headache. . The following information is
published here to explain the reasoning for further study.
Mauskop et al (State University of New York Health Sciences
Center in Brooklyn) recently reported the results of their study of
intravenous MgSO4 for acute headaches. Study participants were 40
consecutive patients (11 men and 29 women) who presented with a
moderate or severe headache of any kind; 16 had migraine without
aura, 9 had cluster headaches, 4 had chronic tension-type headaches,
and 11 had chronic migrainous headaches. 

The results were amazing: Complete elimination of pain occurred in
80% of patients within 15 minutes of infusion of 1 gm MgSO4. No
recurrence or worsening of pain was observed within 24 hours in
56% of patients. They found that all the patients had a deficit in the
percentage of Mg that was ionized (Mg++), regardless of whether or
not the patient responded to the MgSO4 infusion. All patients
except tension headache patients had significantly reduced ionized
Mg++ levels. Patients who responded and had no return of headache
or associated symptoms within 24 hours of IV MgSO4 infusion
were those with the lowest baseline levels of ionized Mg++, and
patients with cluster headaches had the lowest basal ionized Mg++
levels of all. Nonresponders had significantly elevated total Mg
levels compared to responders. 

In 1985, Altura first proposed that Mg may play a role in the
etiology of migraine headache and may be an effective treatment.
Mg deficiency is thought to make the brain more susceptible to
spreading depression and spreading hypoperfusion. Cerebral blood
vessels are more sensitive to Mg (either excess or deficiency) than
any other type of vascular smooth muscle cell; deficiency
potentiates vasoconstriction, excess potentiates vasodilation. (Lucas
MJ, et al. N Engl J Med. 1995;333:201-205. Lipton RB et al.
Neurology 1994;44:28-32, Ottman R, Lipton RB. Neurol.ogy
1994;44:2105-2110.) 


9. PAIN MEDICATIONS
"Pain" as Albert Schweitzer once said, "is a more terrible lord of
mankind than even death itself." Prolonged pain destroys the quality
of life. It can erode the will to live, at times driving people to
suicide. The physical effects are equally profound. Severe,
persistent pain can impair sleep and appetite, thereby producing
fatigue and reducing the availability of nutrients to organs. It may
thus impede recovery from illness or injury and, in weakened or
elderly patients, may make the difference between life and death."
(Ronald Melzack)

Most pain medications in pill form are of little help or useless for
clusters. They just take too long to start working. The advent of
nasal sprays has changed the lives of many cluster suffers.
One of the most discussed and disputed topics in ASHM refer to the
usefulness, availability and controversies surrounding the use of
narcotics for pain control. Although many studies show that less
than 2% of patients using narcotics strictly for pain control exhibit
any addiction problems, narcotics continue to be prescribed far less
than the situations *appear* to warrant their use. The reasons why
vary, the end results do not. Too much "treatable" pain goes
unchecked.

9.1 Stadol®
Generic Name: Butorphanol Tartrate
Opiate Agonist/Antagonist
As both an Agonist and Antagonist, Stadol ( Just as with Talwin)
was promoted as having a low risk of dependency. For this reason,
it was prescribed with little or no worries and became overused by
some.

"Stadol has been a great painkiller for me. There has been some
discussion as to its addictiveness. It comes in a nasal spray form
with approximately 15 sprays per bottle. When my clusters were at
their peak, it would take 2 sprays to find relief to the point where I
could stop pacing and start to relax. As the pain lessened, over a
period of time, I was able to use fewer sprays and eventually was
diluting the spray with saline. My peak usage was 1 bottle every
two weeks, as allowed by my doctor. The few reports of addiction
problems seem to have come from people that were using much
more, up to 10 bottles per month. I had no problems with tolerance,
dependency or withdrawl upon stopping its use. The usual "life" of
the analgesia seemed to be about two hours, which is IMHO, about
perfect for most clusters."

9.2 Methadone®
One of the phenylheptylamine group of synthetic opiates was
originally synthesized in Germany at the end of WWII.
Methadone is about equal to Morphine in actions and potency but
much more effective when taken orally and slightly more potent
when injected. Unlike morphine, methadone provides consistent
analgesia without the need to rapidly increase the dose because it's
widely distributed to body tissues and then slowly released into the
bloodstream.
It is prescribed to be taken throughout the day with breakthrough
pain being relieved with a suitable drug such as Darvocet.


10. OVER THE COUNTER TREATMENTS ( OTC )
There are several things that have been studied to varying degrees
and varied conclusions. A few that show some promise follow.
 
10.1 Melatonin
"Melatonin And Cluster Headaches"
In this study, 10 mg of melatonin was administered to half of 20
cluster-headache patients in a double-blind controlled study that
lasted 14 days. Headache frequency was significantly reduced in the
melatonin treatment group.  Five of 10 people in the melatonin
group reported that their attack frequency declined after only 30-35
days of treatment. No patient in the placebo group responded."
Caphalalgia (Vol 16, Issue 7 1996)

I have found that as little as 3mg at bedtime was as effective with
REM induced clusters as was Doxepin." (BW) (Be prepared for
possible increased/intensified dreaming)

Many people that have tried melatonin have reported excellent
results. I am hoping that a large study will be conducted and results
made known.

10.2  Magnesium
Current work is being done with using magnesium as a preventative
for clusters and taken as an OTC preparation. Dosages range from
200 mg to 400 mg per day with varying results

10.3 Vitamin B-2
"Since upping my dosage of B2 to 200 mg per day about a month
ago, for the first time in my life I have been free from my cluster
headaches. I am referring to cluster (vascular) and not migraines. I
have absolutely no idea why it works for me."(Bud Siemer)

Another member also reported good results with B-2 in the same
thread. Others have had no success. As is the case with most
treatments, as we all know.

"According to literature my druggist showed me, you need 400mg
of B2, Riboflavin, and it takes 3 to 4 months before it works.  I'm
on my 6th week and so far nothing.  Maybe some day something
will help"(Steve King)

200 mg?, 400 mg? Yes, we are still all part of the "trials and
testing"!! PLUS, as always, YMMV.


11. SURGICAL INTERVENTIONS
In general, these types of operations are *not* generally
recommended for people that experience a switching of sides with
their clusters. It might become necessary to perform the operation
on both sides at some point, in these instances.
In addition, the different types of surgery seem to have varying
results in complete and permanent pain control, ranging from 30%
to the 70-80% range in the research I've seen. I haven't seen any
"guarantees" anywhere.
The following is only a "sampling" of the different options, studies,
reports, and what is basically "out there" for you to follow up with
additional research.

11.1  Radiofrequency Trigeminal Rhizotomy
One study reported by Dr. Jamal Taha M.D. and Dr. John Tew
M.D., states that long term pain control was achieved in 62% of 210
patients that underwent this surgery of the trigeminovascular
system.
Radiofrequency waves are used to destroy the pain-carrying fibers
of the Trigeminal nerve in the face.
As a side note, 68% of patients that underwent "Open" Trigeminal
Rhizotomy found long term pain control.
See: http://www.ojoy.com/fpr/Texts/Tew-9.htm 

11.2  Gamma Knife
In this treatment, the patient is placed in an MRI with the head
secured in a steel frame to stop any movement. A computer then
works with the MRI equipment to determine the exact location of
the offending nerves and the amount/duration of the radiation that
will be applied to the nerve. The goal of the operation is to destroy
the nerve that causes the pain. The operation takes several hours.
This operation would leave the side of the face numb as well as the
optic nerve on that side. Possible side effects could be brain stem
damage although I don't know of any reports of such happening.
This is all still very much in the early stages of use. This procedure
as well as the radiofrequency procedures are reserved for the most
severe cases because it results in loss of all pain sensation in the
eye, increasing the risk of eye injury.
Results are not known immediately. It may take up to six weeks for
the full effects to become known. 

11.3  Microvascular Decompression
http://www.neuronet.pitt.edu/groups/ctr-microvasc/welcome.html

This is a surgical operation in which a hole approximately the size
of a quarter is drilled into the skull slightly behind and above the ear
on the affected side. A shredded teflon pad is placed between the
nerve and the surrounding blood vessels. This treatment is designed
to relieve the pressure on the nerve that is placed upon it, by
expanding blood vessels.
Results, statistics and photos can be seen at the above mentioned
website.
 
11.4 Endonasal Microscopic Paranasal Sinus Surgery
Title: 3-year follow-up after endonasal microscopic paranasal sinus
surgery in migraine and cluster headache
Author: Welge-Lüssen A; Hauser R; Probst R
Address: HNO-Universitätsklinik, Basel, Schweiz.
Source: Laryngorhinootologie, 75(7):392-6 1996 Jul

Abstract:
BACKGROUND: Migraine and cluster headache can both be
triggered by sensitive intranasal areas. 
METHODS: Endoscopic nasal surgery was performed in 20
patients with chronic migraine without aura or cluster headaches
that were refractory to other forms of treatment for a mean period of
18 years (range of 1-45 years). The selected patients showed clinical
and radiographic evidence of contact between the middle turbinate
and the nasal septum. All patients experienced immediate relief of
pain following topical application of cocaine to the presumable
triggering area. Five patients with cluster headache and 15 patients
with migraine were treated. 
RESULTS: All patients with cluster headache were free of
symptoms after surgical intervention and for a mean follow-up
period of three years. Six of the 15 patients with migraine were
completely free of symptoms after a mean follow-up period of three
years; five had improved more than 50% in the duration and
frequency of their attacks. Treatment was unsuccessful in
four patients. 
CONCLUSION: This trial established a likely relationship between
nasal trigger areas and cluster headache through the
trigeminovascular system and a possible relationship to some type
of migraine without aura.

Notice the use and success of the cocaine? I was "prescribed,"
diluted nasal drop that worked quite well and very fast. Think it's
tough getting stadol these days? Try getting liquid cocaine!!!


12. WHAT'S NEW IN TREATMENTS
Researchers are constantly looking at new treatments and using
medications that show some promise for clusters because of the
success of the medication when used for related afflictions.

12.1 "Triptans"
"There have been many studies on the new triptans that are coming,
particularly Eletriptan and Frovatriptan.  We will have updates on
these newer triptans after they are approved by the FDA.  

12.2 Ritalin
There were several cases in a recent cluster headache study of
Ritalin  (methylphenidate) being utilized as an abortive therapy.  As
an aside, we (L. Robbins) have utilized Ritalin in eight patients with
cluster headache as a preventive medication.  We have had
approximately a 50% good success rate with the use of Ritalin.  

12.3 Botox
There have been a number of studies on Botox
(botulinum toxin) for prevention of migraine and for chronic daily
headache.  We are awaiting results.  However, indications are that
this is safe (particularly in the very low doses utilized for headache
patients) and fairly effective for up to 50-60% of patients.  The
patients receive 10-12 injections under the skin around the head
over a 10-30 minute time period.  That is it -- it is not repeated, it is
done just once (it may actually be repeated in 4-6 months, but not
prior to that time.)  In the patients who responded, months 2 or 3
were better than month 1, in many cases.  The Botox itself is
extremely expensive, with the medication vial itself costing $400.
However, for refractive severe headaches, this may be useful in
some patients.  
There has been some early work done on cluster patients done with
Botox by Dr. Robbins with some success on a very small sample
group to date. We'll keep our eyes on this one.

12.4  Zanaflex
"A new study on Zanaflex, a muscle relaxant used mostly for
spacticity, revealed that it may be very useful for chronic daily
headache prevention.  Zanaflex is non-addicting, but can cause
significant sedation.  However, the sedation often goes away within
2-4 weeks.  The tablets are double-scored and come in 4 mg.
strengths. The usual titration would be to start with 1/4 or 1/2 tablet
per day for several days, then increase to 1/4 or 1/2 twice a day for
2-4 days and then slowly increase every 2-4 days, up to one pill 2-3
times per day.  Some patients take 2 at night.  There have not been a
great deal of new daily prevention medications, and this is a
welcome addition to the prevention armamentarium."
(Dr. L. Robbins)

12.5 Hyperbaric Oxygen
Listed under new treatments as there are still plenty of test and trials
that need to be done before it's used on a regular basis for cluster
treatment.
Much of the testing to date has been centered around migraines but
have also shown that it may be a viable treatment for clusters in the
future. 

The patient goes into a compression chamber at the hospital in order
to be exposed to oxygen at higher than normal atmospheric
pressures.  It is an accepted medical (and Medicare) treatment for
several things like faster healing of wounds, see
http://www.wpsic.com/medicare/policy/phys-056.html . 
Another interesting link is
http://www.dimka.com/hyperbaric-oxygen/Information_Kiosk.html.

HBO is outpatient therapy.
"During therapy, the patient breathes pure, 100% oxygen under
increased atmospheric pressure. (The air we normally breathe
contains only 19- 21% oxygen gas.) The concentration of oxygen
normally dissolved in the bloodstream is thus raised many times
above normal (up to 2000%). In addition to the blood, other body
fluids including
the lymph and cerebrospinal fluids are infused with the healing
benefits of oxygen. With the added 'driving force' of oxygen under
pressure in a hyperbaric chamber, the gas can reach bone and tissue
normally inaccessible to red blood cells. "
Headache 1998 Feb;38(2):112-5 

A view of one abstract, abbreviated:
Hyperbaric oxygen in the treatment of migraine with aura.
Headache 1995 Apr;35(4):197-9 
Myers DE, Myers RA
Department of Oral Medicine and Pathology, University of
Pittsburgh
School of Dental Medicine, PA 15261, USA. 

Oxygen inhalation was early advocated as a treatment for migraine
headache. It has been theorized that the efficacy of raising blood
oxygen levels in vascular headache is mediated by vasoconstriction
and metabolic effects. Hyperbaric oxygen can provide a much
greater level of blood oxygenation than can provide a much greater
level of blood
oxygenation than normobaric oxygen, and in recent studies it has
been used in the treatment of cluster headache. The purpose of this
study was to compare the effects of hyperbaric oxygen and
normobaric oxygen in migraine. Twenty migraineurs were divided
randomly into two groups and studied in a hyperbaric chamber
during a typical headache attack. Global headache severity was
measured by a verbal descriptor scale
before and after exposure to oxygen. One group received 100%
oxygen at 1 atmosphere of pressure (normobaric) while the other
received 100% oxygen at 2 atmospheres of pressure (hyperbaric).
One of the 10 patients in the normobaric group achieved significant
relief of headache symptoms, while 9 of 10 in the hyperbaric group
found relief.
Based on a chi-square test, this difference is significant at the P <
.005 level. Those patients who did not find significant relief from
normobaric oxygen were given hyperbaric oxygen as above. All
nine found significant relief. The results suggest that hyperbaric
(but not normobaric) oxygen may be useful in the abortive
management of
migraine headache. Possibilities for the mechanism of this effect, in
addition to vasoconstriction, include an increase in the rate of
energy-producing and neurotransmitter-related metabolic reactions
in the brain which require molecular oxygen.