Hi Guys,
I've been putting off writing this post for a few months but have broken down because it simply isn't fair to deprive people of this treatment.
My Story: When I first began seeing doctors for my POIS, a neurologist diagnosed me with post-coital headaches and prescribed indomethacin (an NSAID) for treatment. As this diagnosis was just plain wrong, I was deeply skeptical of the prescription. As a result, I took it (maybe) twice before searching out new avenues of treatment. But when the forum began to reemphasize the allergic hypothesis, my mind wandered back to NSAIDs, which are excellent treatments for improper immune response and inflammation. Upon re-taking indomethacin I discovered that NSAIDs were probably the SINGLE MOST EFFECTIVE treatment for POIS that we've discovered thus far. I also discovered, however, that it gave me severe asthma problems and somewhat less severe stomach pains. So I made the switch to Celebrex -- which i've actually found to be far more pleasant and somewhat more effective -- and have been able to control my POIS fairly absolutely ever since.
My Results: With the help of NSAIDs, Day 1 is now Day 4. And Day 2 is now "post-Day 4." Meaning that on Day 1 I feel very few cognitive symptoms, and that I feel like a completely normal person after one day of treatment.
My treatment: I take Niacin prior to orgasm to reduce the level of my reaction. Then about an hr post-orgasm I take my first 200mg of Celebrex. (The medication is known for being softer on the stomach than most NSAIDs but it's still important to take it with food, otherwise you could develop an ulcer. I've found that if I take it with grains, it makes me super-drowsy -- maybe because they make it sit in the stomach longer. If I take it with meats, however, I get no drowsiness.) About 8 or 9 hours later -- usually right before bed -- I take my second 200mg pill.
This has given me complete control over when I have my symptoms. If I know that I need to be at 100% for something, I can still O within a day of the event and be completely fine.
Things I've learned:
-Niacin DOES NOT reduce our symptoms by 90%. This notion has been circulated endlessly on the forum but it's simply not true. While Niacin has made our lives immensely more livable, it's very far from a long-term cure/treatment for the disease. This is something that I was already aware of -- even after using Niacin i'm significantly more articulate, capable and "with it" on Day 4 than Day 1 -- but NSAIDs have made that awareness more acute. I don't say this to disparage Niacin -- it's worked wonders for me and continues to be a part of my treatment. But the clarity that i'm getting from NSAIDs demonstrates pretty well that, while Niacin takes our functionality from about 15% to 70%, we're still very far from the people we could be!
-The disease does seem to have an allergic component. But there's also something else. Celebrex eliminates 95% of my symptoms for the 3 or 4 days after taking it (presuming I don't have an orgasm). But i've learned that when i'm subjected to considerable stress or forced to undertake an especially exhausting activity, my cognitive symptoms experience a modest resurgence. (To be clear, this decline in cognitive function is more/different than what ordinary people experience when they're "worn out".) The fact that I'm capable of developing some symptoms in the absence of orgasm indicates to me that our disorder has a hormonal or vascular component, independent of the allergy. (Maybe its an underlying problem that the allergy makes all the more severe.) Hopefully when we have funding for research we'll be able to explore this more fully.
Cautions: NSAIDs are awful for you. They're bad for your liver and worse for your heart. For this reason, I try to keep my Celebrex use to once or twice a week. (And Celebrex is supposed to be one of the good ones.) If you begin seriously investigating this treatment, make sure to consult a doctor and be fully informed of all the side effects.
Hope this helps someone out there!
