Lengthy-but possibly the first step to a CURE!?!

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Posted by Drue ( on July 17, 2000 at 15:36:01:

I would first like to apologize for the lengthy entry , but I have an interesting story
to tell that just might be an answer for many cluster headache sufferers like
myself. My name is Drue, and I am a 54 year old male. I had a clean bill of
health until the drama of my life began to unfold......Perhaps you can relate.
Although I have no scientific proof of test reports to back me up, I believe
that my Hyperthyroidism and Cluster headaches are directly related.
My first indication that something was amiss was in 1991. Each day just
before noon I could feel my heart racing, and my pulse would increase to around
90-100 with no physical exertion. My pulse would also skip several beats per
minute. I consulted a doctor friend of mine who insisted that I wear a Holter
monitor for 24 hours to see exactly what was going on. The results showed my
pulse to be a little rapid, and the skip wasn’t really a skip. Two beats were
happening so close together that they seemed like one. The skip was the longer
interval between this second beat and the next one which came at the correct
spot. A reduction in my caffeine helped the problem but did not eliminate it. At
this time, I lost about 10-12 lbs of my 238 lbs with no effort or explanation on my
A few months later, I noticed that when I drank a few beers I would get a
terrible, stabbing pain in my left temple. (Beer had never before affected me in
this way.) The problem worsened over the next couple of years and progressed
to the point that I could not consume any alcohol without getting that stabbing
During this same time period, my rapid pulse and irregular heartbeat
occurred more often. Sometimes, particularly at night when I lay down, my
heartbeat would make me think of a cardboard box with a rock inside with
someone shaking the box. Even though I had completely abstained from alcohol,
I began to get the stabbing pain in my left temple from time to time.
From 1993 until 1996, I continued to slowly lose weight, and the
headaches worsened and occurred more frequently. I was having 4-6
headaches every day and at least 1 each night after I went to sleep. My weight
was down to 212 lbs. I consulted a neurologist who diagnosed my headaches as
cluster headaches. Over the next few months, we experimented with different
drugs to help with the headaches. We finally found that 600 mg of Lithium
Carbonate and Pamelor each day helped the most. I was down to 1 or 2
headaches each day or two. I was also down to 204 lbs. The neurologist
arranged for me to see a doctor to look into my weight loss.
Over the next two years, I had almost any test you can dream of. I had
x-rays, MRI’s, CAT scans, endoscopes, colonostopies, cystoscopes, EKG’s, plus
numerous blood and urine tests. All tests came back perfectly normal, including
3 separate Thyroid Profiles.
In February of 1998, I suffered a mild heart attack and was hospitalized
for a week. During this time, more tests were run that also came back normal.

After my release from the hospital, I continued to take Pamelor and
Lithium. (I had decreased my Lithium to one 300 mg capsule a day around the
first of the year because of the side effects. Decreasing the Lithium did not
increase my headaches.)
In March 1998, my lower legs and ankles started swelling. I went back to
the doctor, but my regular doctor wasn’t in. I saw another doctor that examined
my legs. He had my thick folder in hand and asked if my thyroid had been
checked. I told him “it had been checked three times last year”. He then said that
he wanted to run yet another test. The results showed a very Hyper Thyroid. My
Thyroid was so over-active it had developed into Graves’ Disease. A Nuclear
Thyroid Uptake was scheduled. This test confirmed the previous thyroid test
results. My Uptake after 6 hours was 46%, normal being 10-15 %. I was referred
to an Endocrinologist who recommended and arranged for me to take a
Radioactive Iodine Pill to reduce or eliminate my thyroid gland.
When I took the pill around the first of July 1998, I was down to 186 lbs
and still having cluster headaches each day or so. Over the next 30 days, I lost
another 8 lbs and looked and felt terrible. My T4 had been 36 before the nuclear
pill and had not dropped any.( I think normal is around 10-14.) The
endocrinologist was contacted, and he said that the pill takes a while to do its
job. When told of my condition, he prescribed Super Saturated Potassium Iodide
(SSKI) drops to take. In 2-3 days, I was feeling and looking better. After 1 week
on SSKI drops, my cluster headaches disappeared completely. I did not have a
cluster headache from August 1 until November 20. I did not even feel any of
the old warning signs that used to precede a cluster headache. I gained a pound
the first week I was on SSKI. After 2 weeks on SSKI, my T4 was down to 16. Two
weeks later, it was down to 2. The SSKI drops, the Lithium, and the Pamelor
were discontinued but the cluster headaches did not return. From August 1 until
November 20, my weight increased to 195 lbs.
My endocrinologist started me on a low dose of Synthroid, gradually
increasing the dosage to .2 mg per day over the next several months until my T4
levels were back to normal. During the slow increases upward in the Synthroid,
my headaches started reoccurring. At first, I would have one every week or so.
Then they finally settled down to 2 to 4 per day by the time the Synthroid dosage
reached .2 mg per day.
The .2 mg of Synthroid and the 2-4 cluster headaches continued until
June 2000, occasionally skipping 1 or 2 days in the cluster headache cycle. (My
cluster headaches have been chronic for four years with no remission, except for
the short time following the demise of my thyroid gland.)
On July 6, 2000, I decreased the dosage of Synthroid from .2 mg to .175
mg per day. Since that day, I have not had a cluster headache. Although it has
only been 12 days, as of July 17, 2000,I feel as though I have found a way to
prevent my cluster headaches. Reducing the dosage of Synthroid has slightly
reduced the T4 level in my blood and slightly increased the TSH (Thyroid
Stimulating Hormone) level in my blood. This slight change has eliminated my
cluster headaches.
Some of the drugs that are prescribed for cluster headaches, such as
Lithium, reduce the amount of the T4 hormone produced by the Thyroid gland.
SSKI is an old drug that was used to treat Hyperthyroidism. When I took SSKI,
and my Thyroid gland was destroyed, my cluster headaches disappeared.
During that time, I could NOT have a cluster headache! Even drinking several
margaritas or several cold beers would not cause a cluster headache.
I believe that a slight reduction in the T4 Hormone in a person’s blood can
reduce the frequency of or ELIMINATE cluster headaches!
I think that anyone that suffers from cluster headaches should have their
Thyroid checked. Even if the results indicate normal levels of T4, slightly
lowering this level can still leave the T4 in the acceptable range.
The dosage of SSKI that I took was 10 drops in a glass of water each
morning. This dose was for a very over-active Thyroid gland.
Anyone interested in trying this approach should consult their doctor
before doing anything that will affect their Thyroid function.
I have talked to my regular doctor, my neurologist, and my endocrinologist
about a relationship between cluster headaches and the Thyroid gland, and
none of them have ever heard of any relation between the two.
Good Luck, and I sincerely hope this works for you also.
If anyone would like to personally contact me, my e-mail address is


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