Hey peeps, wanted to share my scenario..

Approx 12 years ago I used to get severe cluster headaches EVERY time I wld orgasm. They would occur "immediately" after orgasm,..The severe headaches would last approx 2-3 hours. I'd often go into emerg for demerol, which would have little effect. (the most painful thing I've ever experienced - I can assure you, this is a very effective form of birth control)

I went to 3 neurologists in total seeking answers. The first two said it was caused by stress, and had no answers, the third claimed to be familiar with this exact type of cluster headache and said it was called an "orgasmic cluster headache". ...He described it best by asking if "it felt like an ice pick in my brain".. (I'm sure I dont need to explain the feeling to you guys).

After MRI's and CT scans, he said it was caused by nerves running up  the back of my neck. He said i was holding my head in a stiff manner during sex, which caused it. I'm not sure if I buy that, but they gave me muscle relaxers and it seemed to subside.

            ....now this is where it gets interesting ....


That was 12 years ago ..... 2 years ago I was miraculously diagnosed with a small brain tumor on my pituitary gland. I say miraculously, because it was an accident and a damn good doctor who caught it. It has caused a number of irregularities including growing 2 inches in height in my 30's, hands and feet growing, sleep apnea, severe arthritis, carpel tunnel, etc etc ...as a result, unbeknownst to me, my HGH levels were through the roof (over 1300 micrograms - normal is approx 250) I was basically roid raging all the time. Might sound strange, but I thought all my symptoms were simply part of aging, so didn't react and learned to live with it.

The docs said I probably had the tumor (called acromegaly) for 20 years. I had the tumor removed last year...it was shear hell, but as ainful as it was, the cluster headaches hurt more  (not removing the tumor causes organs to grow, causing heart, kidney and/or liver failure)

The reason I'm sharing this is, the tumor was in the EXACT place where it felt like the ice pick was inserted into my brain 12 years prior when I was getting the "orgasmic cluster headaches"... Is this in my head (lol), or is it possible that my cluster headache was a result of this tumor...and if so, why didn't they see the tumor when they did MRI's 10-12 years ago ??? Has anyone heard of this before ???

Our pituitary glands are located in the part of our brain, behind and between the eyes. This is EXACTLY where the cluster headaches occurred. Is this a common place to feel the pain, or do the vary ?

I've tried to research "orgasmic cluster headaches", but cant find anything describing what I had. Anyone have a good source of info re this ??

I also haven't been able to find a connection between my tumor or the cluster headaches.
Anyone heard of a connection ???

Even though science has come a long way, the human brain is still very much unchartered territory.... The only way they (or us) will figure it out is by sharing stories.

Thank you for allowing me to share..and pleaze feel free to help connect the dots.

Fascinating history...  In all of your sessions with the neurologists and neurosurgeons, have you had the lab test for your 25-Hydroxyvitamin D serum concentration measured???  You could be vitamin D3 deficient...

Take care,

V/R, Batch

There is little in the literature on coital headaches but they are a primary headache disorder.

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Pituitary tumors can lay dormant for years.  Sounds like your tumor caused an huge increase in your growth hormone (HGH) which lead to your growing 2" and such beginning a few years ago. 
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Ask your Doc, they may be 2 totally unrelated issues.

Hope you are doing well.

PS:  childhood acromegaly and HGH pituitary tumor, remember Andre the Giant.
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The clinical characteristics of headache in patients with pituitary tumours

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The very type situation which prompted posting:

Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

So how exactly was it caught?  I'm having coital headaches, including a dull ache for the past 8 weeks that won't go away (major attacks happen during sex), but my MRI,MRA,CT showed nothing.  I wonder if yours 12 years ago would've shown nothing.  One major difference is that I'm not "'roid raging"; I doubt my HGH is that high at all as I exhibit physical symptoms of a higher estrogen level (and I'm a man). 

That sounds like a harsh story man :(

Sorry to hear it.

Thank you Doug.