Hello. I have been googling to try to find somewhere to chat with other headache sufferers like myself, and I cam across this place. I am not sure if it is related to cluster or not. But just looking for some options, or some other ideas.
Back in October I had a sex headache. At orgasm I got a thunderclap headache up my neck and throbbed in the middle back of my head. if you feel the back of your skull it is right in the middle where it is kind of pointy. It jumped up to a 9/10 out of nowhere. I was about to call an ambulance. I was really scared. Over the course of an hour it dropped down to about a 3. Over the next few days I would have headaches on and off. Well I have been left with is positional headaches. When my head is in a forward and looking up position for a few minutes, I get a throbbing headache at about a 7-8/10 in the back middle of my head. If I lay down, within 10 minutes it goes away, without meds. When I say forward and looking up. Think of sitting at the dinner table, leaning over your plate eating, but look up to talk to someone across from you. It seems most of the times I get these I am in fact sitting at a table eating dinner with my family or out at a restaurant. Happened last weekend we were at a wedding. Eating and talking with the other guests, it just popped out of nowhere.
I have had a CT scan of my head and neck with contrast. I also had a MRI of my head in December. All came back clear. I had an Occipital Nerve block, and it didn't seem to do much, if anything. I have been put on different types of meds. Carbapenapine, gabapentin, baclofin, and recently Topamax. The Carba made me dizzy same with the gabapentin once I went over 1200 a day, I came off that slowly and then went on Topomax but it made me dizzy and cold and just stopped it today after a week of the side effects.
The Neurologist ordered a MRI of my neck, and I am awaiting insurance approval. I am also going to call them later to get something to replace the Topamax. I feel like maybe when I had that original headache it did some kind of damage, maybe a muscle contracted and is now pinching a nerve when I put my head in that position? I don't know, but I am so cautious of the position of my head. I had to slouch in my chair at work to keep my head straight in line with my monitors. But I don't know where to go. I am 39 and have kids that are 8 and 5, I feel awful, I cannot sit at the table with them, for fear of headache. I can't be as active as I once was with them. Yesterday while my wife took them to the movies, I just laid in bed and cried all day. Just so lost. Not sure if I should seek another Dr, or stay the course with the one I have now. I did start using an app called migraine buddy. If you don't have it, I suggest it for any type of headache tracking.
Not looking for answers but maybe some questions I should be asking that I am missing. Or anyone else have a similar experience.