No set of symptoms is ever going to be completely consistent with any full set of possible symptoms for a diagnosis... but, a lot of the symptoms you described do sound very consistent with cluster headaches. Just because you don't have the nasal drip or tearing of the eye does not mean you don't have cluster headaches. The terrible, screaming pain sounds very much like cluster headaches... and since you were not having a stroke or an aneurysm according to the CT/MRI (well, you'd probably be dead if you'd had those symptoms and an aneurysm, honestly... so, that's another reason it's probably not that) ... the next best explanation for "the worst head pain ever" other than a very serious instantly life-threatening emergency is a cluster headache.
Cluster headaches CAN be triggered by sex since they can be triggered by any sort of aerobic exercise. A suggestion would be to take a more passive role during sex and to see if you avoid triggering a headache that way.
Another suggestion would be to try and avoid the headaches using preventative medication... there are many preventative medications for migraines on the market, but unfortunately not as many for cluster headaches... I don't really know much about the ones that are available for cluster headaches. I know that there was one that was similar to LSD (but in low enough doses that it did not cause any sort of hallucinations) but it was taken off the market... I know that there are trials going on to find a replacement for this drug though. I know that topamax, which many migraine patients use, is also used for the preventative treatment of cluster headaches. Lithium, a drug normally used for patients suffering from bi-polar disorder, is used sometimes, although you mentioned that you cannot take sumitriptan for acute attacks due to current SSRI interaction, so I don't know how lithium would interact with this at all or if it would... but it might not be the right choice, I don't know. Also, I think that a type of medication called calcium channel blockers are the most used for cluster headaches in preventative therapy. This is probably the type of medication you want to be talking to your doctor about.
So, if taking a more passive role in sex doesn't help to reduce the aerobic aspect of sex and therefor reduce the chance that it might become a cluster headache trigger, you might want to consider talking to your doctor about going on a calcium channel blocker in order to prevent the cluster headache attacks so that you don't have to be afraid of sexual activity in the first place.
Also, even though sumitriptan pens (injections) aren't an option for you according to your doctor (the SSRI interaction is actually very rare... although, for some cluster headache patients triptans do not work and anything but a sumitriptan pen tends to be counter-indicated... so, yeah, best to stay away from the triptans for now I guess... and if the SSRI interation ever stops being a problem, only ever use a sumitriptan pen, that's an injection of sumitriptan)... anyway, yeah, even though the triptans aren't an option, the Nasal Lydocaine isn't your only option if it's not doing it's job to stop the cluster headache after it starts. You can also try oxygen.
Oxygen is one of the best acute treatments for cluster headaches. Please talk to your family doctor about getting a prescription for oxygen, your family doctor will also need to teach you how to use it. If the oxygen can stop the cluster headache... you might feel better knowing you have something that can actually fully STOP the headache... might make you less afraid to engage in activity that might trigger one.
So yeah... those are my thoughts and suggestions:
- sex could be a trigger due to the aerobic activity
- reduce the aerobic activity of sex to reduce sex as a trigger (take a more passive role, make the other person do the work!)
- if that doesn't help talk to your doctor about a daily medication for cluster headaches
- get something better than the Lidocaine nasal spray if it is not working to fully stop the headaches. one suggestion is oxygen as it is one of the best acute treatments for cluster headaches and can be used often and long-term... whereas lidocaine cannot be used often if it is being used long-term.
I guess the good news (that I've been missing) is that if they ARE clusters, then they'll go away. I'd hate to think that age 36, I have to indefinitely assume passive positions in sex indefinitely to avoid horrid pain. I'm still thinking that the antidepressants I've discontinued / started have some role in this.. But I probably never will TRULY know. Another week until I see the neurologist.. Incidentally, is this forum moderated by a doc? Just curious
There are doctors that sometimes visit all of the forums, although this area of the forums is more for community support, but doctors do visit here all the time and do answer questions on the pages often! A doctor might answer this question, and you will know that they are a doctor because they will have the little yellow medical symbol, the caduceus, next to their user name to identify them as a doctor.
BUT If you would like to specifically ask a doctor a question, as opposed to community-support, peer-support and patient-support, there is the "Ask a Doctor" area of the forums. The "Neurology Help" forum of the "Ask a Doctor" area is probably the best place to ask questions to doctors regarding headaches. Here is a link to that forum:
There is also a place on the forums where you can ask pharmacists questions if you ever have questions about medications:
Hope that helps! :)