My Meeting with a Neurologist
My cluster headache phase has been out of control for the past two days with headaches occurring upwards of more than 8 times a day. That's just unheard of for me.
I saw my primary care physician Monday afternoon and he wasn't happy with me because of the amount of prednisone I've been using. My regular doctor (Dr. John Gay) retired more than a year ago and I've not yet found anyone I'm comfortable with to take his place. As best he could, Dr. Gay appreciated the crippling pain associated with cluster headaches and would go out of his way to see that I got the meds I needed to minimize the pain of my headache phases throughout the years. If that meant using more prednisone than he'd like to see me use then so be it. Living with the pain of cluster headaches is no option either.
The doctor I saw on Monday is a by-the-book sort and he does not color outside the lines. He offered me pain meds to get through the cycle but I told him that those would be of no value to me. Cluster headaches simply don't respond to them. I knew by his suggestion that he didn't have the necessary grasp to advise me on how to proceed so we're parting ways. He did suggest that I see a neurologist and I respect him for that.
And so Tammy arranged an appointment.
It was a snowy, slippery drive that Tammy and I made into Minneapolis for my neurologist meeting this afternoon at the Noran Neurological Clinic with Dr. Sethna. I had just had a cluster headache less than an hour before we left so I figured it would be okay for me to drive but I was wrong. I felt the familiar throbbing begin behind my left eye when we were 20 minutes from the clinic and by the time I parked the car and made it into the reception area I was doing all I could just to keep moving forward. Tammy had me by the arm as we walked through the parking ramp; I was approaching full-blown cluster headache mode. I took a seat inside the clinic and put my head in my hands, rocking in my chair while Tammy worked with the woman behind the desk and got my paperwork filled out.
Within 15 minutes we were meeting with the neurologist. He had some general questions about my headaches: when they began; how long they typically last and how I've treated them in the past and such. He seemed surprised to learn that I was only 17 when I first experienced them. I handed him a list of dates for my cluster phases going back more than 10 years as well as my daily prednisone usage for the past few months. I keep detailed records of this stuff.
He conducted some strength and reflex tests over many parts of my body. I think he was mostly concerned with how the months of prednisone use has affected me. He seemed pleased with how my body was holding up apart from a little shakiness and some overall weakness.
He asked if I was open to trying to induce a cluster headache and I told him that wouldn't be necessary because I was still experiencing the one I'd walked into the clinic with although it was now only hovering at a level 3-4 from the 7-8 it had been. He was curious to see how I'd respond to a cocktail of steroids injected into the back of my skull at the area that is most sensitive to touch near where I feel the pain of a cluster. I told him to feel free to poke me all he wanted. He did a series of 3 rather deep injections, working the needle around to try and reach the spot he was after. I believe the drug was dexamethasone and something beginning with an M that I can't recall. It was a little painful but I told him I didn't mind the pain so much as long as it was different from that of a cluster. I told him that in a somewhat perverse way, a different sort of pain is welcome. It's why we clusterheads sometimes bang our heads against a wall to take our minds off the cluster headache pain. I think he understood.
The injection's effect was noticeable. Within just a few minutes my level 3-4 pain had dropped to a 1.5 at most and I was thinking I'd be able to drive us home.
We talked about some various other forms of treatment beginning with a testosterone evaluation. I told him that I already know I have Low-T with a reading from two years ago of 284, just under the low side of average. He wanted to have me tested again and suggested I consider an 8mg testosterone patch. I asked about the side-effects because I know there are many and he was quick to acknowledge them but he felt the potential for an elevated testosterone level to possibly break the cluster cycle was one worth considering. I agreed without much hesitation.
He also prescribed Tizanidine for me, a muscle relaxer used for migraine sufferers.
Tammy mentioned the psilocybin route and he said he wouldn't discourage anyone from seeking that sort of help but that it obviously wasn't something he could aid us with. He too had read the limited studies about it.
It's been 5 hours since the injection the doctor gave me and I'm feeling as good as I've felt in several days with nothing even close to a headache. This comes as such a relief to me. I'll have to wait to see what the night has in store.
I can't say enough about what a partner I have in Tammy. She is such an advocate for me in seeing to it that I'm doing all I can to manage this situation. She's so incredibly comforting and understanding and that's not always easy to do with these headaches. Oftentimes, spouses can be a little intimidated by these monsters but not Tammy. She knows just what I need, when to come alongside me and when to give me space. I love her so much!
I saw my primary care physician Monday afternoon and he wasn't happy with me because of the amount of prednisone I've been using. My regular doctor (Dr. John Gay) retired more than a year ago and I've not yet found anyone I'm comfortable with to take his place. As best he could, Dr. Gay appreciated the crippling pain associated with cluster headaches and would go out of his way to see that I got the meds I needed to minimize the pain of my headache phases throughout the years. If that meant using more prednisone than he'd like to see me use then so be it. Living with the pain of cluster headaches is no option either.
The doctor I saw on Monday is a by-the-book sort and he does not color outside the lines. He offered me pain meds to get through the cycle but I told him that those would be of no value to me. Cluster headaches simply don't respond to them. I knew by his suggestion that he didn't have the necessary grasp to advise me on how to proceed so we're parting ways. He did suggest that I see a neurologist and I respect him for that.
And so Tammy arranged an appointment.
It was a snowy, slippery drive that Tammy and I made into Minneapolis for my neurologist meeting this afternoon at the Noran Neurological Clinic with Dr. Sethna. I had just had a cluster headache less than an hour before we left so I figured it would be okay for me to drive but I was wrong. I felt the familiar throbbing begin behind my left eye when we were 20 minutes from the clinic and by the time I parked the car and made it into the reception area I was doing all I could just to keep moving forward. Tammy had me by the arm as we walked through the parking ramp; I was approaching full-blown cluster headache mode. I took a seat inside the clinic and put my head in my hands, rocking in my chair while Tammy worked with the woman behind the desk and got my paperwork filled out.
Within 15 minutes we were meeting with the neurologist. He had some general questions about my headaches: when they began; how long they typically last and how I've treated them in the past and such. He seemed surprised to learn that I was only 17 when I first experienced them. I handed him a list of dates for my cluster phases going back more than 10 years as well as my daily prednisone usage for the past few months. I keep detailed records of this stuff.
He conducted some strength and reflex tests over many parts of my body. I think he was mostly concerned with how the months of prednisone use has affected me. He seemed pleased with how my body was holding up apart from a little shakiness and some overall weakness.
He asked if I was open to trying to induce a cluster headache and I told him that wouldn't be necessary because I was still experiencing the one I'd walked into the clinic with although it was now only hovering at a level 3-4 from the 7-8 it had been. He was curious to see how I'd respond to a cocktail of steroids injected into the back of my skull at the area that is most sensitive to touch near where I feel the pain of a cluster. I told him to feel free to poke me all he wanted. He did a series of 3 rather deep injections, working the needle around to try and reach the spot he was after. I believe the drug was dexamethasone and something beginning with an M that I can't recall. It was a little painful but I told him I didn't mind the pain so much as long as it was different from that of a cluster. I told him that in a somewhat perverse way, a different sort of pain is welcome. It's why we clusterheads sometimes bang our heads against a wall to take our minds off the cluster headache pain. I think he understood.
The injection's effect was noticeable. Within just a few minutes my level 3-4 pain had dropped to a 1.5 at most and I was thinking I'd be able to drive us home.
We talked about some various other forms of treatment beginning with a testosterone evaluation. I told him that I already know I have Low-T with a reading from two years ago of 284, just under the low side of average. He wanted to have me tested again and suggested I consider an 8mg testosterone patch. I asked about the side-effects because I know there are many and he was quick to acknowledge them but he felt the potential for an elevated testosterone level to possibly break the cluster cycle was one worth considering. I agreed without much hesitation.
He also prescribed Tizanidine for me, a muscle relaxer used for migraine sufferers.
Tammy mentioned the psilocybin route and he said he wouldn't discourage anyone from seeking that sort of help but that it obviously wasn't something he could aid us with. He too had read the limited studies about it.
It's been 5 hours since the injection the doctor gave me and I'm feeling as good as I've felt in several days with nothing even close to a headache. This comes as such a relief to me. I'll have to wait to see what the night has in store.
I can't say enough about what a partner I have in Tammy. She is such an advocate for me in seeing to it that I'm doing all I can to manage this situation. She's so incredibly comforting and understanding and that's not always easy to do with these headaches. Oftentimes, spouses can be a little intimidated by these monsters but not Tammy. She knows just what I need, when to come alongside me and when to give me space. I love her so much!
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