HI I am a neurologist and can try to answer your question
Well you are offline, so I am going to leave my answer, please read what I wrote and if you are satisfied with my answer, hit the accept button as that is how I am compensated for my efforts. thank you. If you have questions please get back to me and I will be back to answer your questions, even if you hit the accept button. ok?
So I am going to be honest with you, this is an online relationship and there is no doctor-patient relationship, it is only for information purposes. Your first statement that you have cluster headaches and that they are daily for 16 years doesn't follow the criteria for cluster headache. I am going to paste in the international criteria for headache, and I would ask that you look at it closely, there was a lot of time put into this, because the theory here is that each headache type is different, and needs specific treatment, without the correct diagnosis, you have nothing and you won't be effectively treated.
If there is one thing I want to get to you in this writing, it is that if you have headaches, the only one that can really help you is yourself. So spend some time and work on this project.
An important point, and I am sure you have been told, is you need to keep a very specific headache calendar that gives all the parameters of each headache,when it starts, end, what makes it worse, what makes it better ,where on your head, squeezing, pounding, nausea, visual spectra or scintillation scotomata, aura, all of that is very important before you go to the classification.
Now there are many treatments you have not listed like Botox, nasal Oxygen, viscous lidocaine, cGTP inhibitors,the list goes on and on, so get back to me with questions as I want to help you with your 16 year history if I can. If you have any MRI scan reports or any neurologic studies like an eeg or polysomnogram
Please also hit the accept button if you want to continue and you feel I have answered your question. Please look at classification for paroxysmal hemicrania or chronic daily headache (CDH) and see if it matches up. ok? thanks XXXXX
HI I was going to ask you if you have tried nasal oxygen therapy, using a nasal cannula at 6-10 liters/min (high rate), or viscous lidocaine that you put on a nasal swab (long cue tip) and put on your nasal mucosa on the side of the nose that is running or the side of the head that is effected. Both of those treatments have been effective with my cluster patients.
Since you live near Chicago, my suggestion would be the Diamond Headache Clinic, run by Seymour Diamond MD and his wife. They have one of the most famous clinics in the world. and they are close. He is the one giving expert lectures at the academy of neurology annual meetings, so I would say it is worth the effort. There are also some new experimental migraine meds that may be effective in paroxysmal hemicrania or even cluster, they are cGTP inhibitors. cGTP is a new substance that has been identified in the brains of migraine patients and may be the initiator in the migraine/vascular cascade, so an inhibitor may be effective if used early on. I am attaching the webpage on the diamond clinic so you can review it. If there is anything else I can do, please just respond. If you feel I answered your question, please hit the accept button as that is how I am compensated for my work. thank you.. Dr. Frank T.