I have quite a long read for you here, so I am sorry about that. I just wanted to get as much info out there as I could.
I have what I believe are a more unique set of symptoms to my headaches, and that is likely why I spent many years being treated ineffectively by neurologists. I am curious to hear if anyone has any opinions on whether or not I even fall into the category of CH. Additionally, I'll add at the end here another layer to the mystery to keep everyone on their toes.
I am a 37 year old male, I have had "bad headaches" since my teens. They were always longer in duration and did seem to follow more of a seasonal trend with a slow and steady ramp up of severity and then a nice gradual decline and poof they were gone. The headaches would last a few hours or more typically, it's difficult to remember that far back. None of the standard OTC medications would touch them, I recall the drug fiorinal occasionally giving me some minor relief when they were so bad that I was able to convince my parents to pick me up from school.
It wasn't until my early to mid 20's that I got a more clear picture of the cycles. At that point neurologists would prescribe me relpax which would never help. Maybe by the end of the cycle if I guessed right and took relpax the second one was coming on did I get any relief. During the cluster/cycle my headaches would start slow and ramp up over the course of a week or two. At first caffeine would kick them, then excedrin + caffeine, and then finally nothing would touch them and the pain would hit 8/10 or 9/10 and last for 4-6 hours. I'd get 2 headaches per day during the peak of the cycle/cluster, they would be truly excruciating. I would roll around on the ground begging for mercy, or try jamming my head sideways into the floor to cut off blood floor. The cluster would last 3-4 weeks and then it was gone. I would get 1 or 2 clusters per year.
Around my mid to late 20's I learned, through the internet forums, about injectible imitrex. I made an appointment with a new neurologist who knew nothing about headaches but as long as I got an MRI done was willing to prescribe it for me. (I had an MRI done 10 years ago and 3 years ago, both were normal). I still remember the feeling the first time I used imitrex. There was the initial nausea that scared me quite a bit, (but now I am so used to it that it's a positive sign that it's working). It worked within 5-10 minutes, complete relief, I felt like a drug addict. Such euphoria, how could something work so well, so fast, when nothing ever previously worked at all ?!?
From that point forward I viewed neurologists as my imitrex script writers and nothing more. They never helped me, they never diagnosed me with anything other than migraines. I used the same neuro for a few years as I got my clusters. About 4 years ago I went to make an appointment with my neuro to re-up my prescription and he couldn't see me for 3 weeks. No big deal, I'll make an appointment with whatever office can get me in sooner to write a prescription. To my surprise, the new doctor actually cared to ask me some pertinent questions and dug deeper within 60 seconds than any neurologist ever had before. He told me that I had cluster headaches. I told him that my symptoms did not match the typical symptoms but he pointed out that it was some sort of variant of cluster headaches, but CH none the less.
My symptoms: My headaches last 4-6 hours, the rare 3 hour or 7 hour a possibility. I also usually do not find my eye to be the primary point of pain. It is typically either my forehead, (always my left side), or the top of my head (always my left side). This cluster right now is the top of my head, left side, same spot each time. Each cluster though it is only in that 1 spot, so either on the top of my head for 1 cluster or my forehead for a different cluster. So in that regard, I do not fit the CH profile. However, my pain is absolutely unbearable, they come in clusters and then go dormant for 6-18 months, and imitrex was the only medication that ever worked for me. The nights are the worst, usually getting one before bed or within an hour of falling asleep. Then I am woken up with one bright and early in the morning or in the middle of the night. During the day is on and off, more of a wildcard.
With the CH diagnosis I was a new man. He wrote me a script for 24 injections! My previous neuro's only getting 5 or 6 shots out of my insurance as they were diagnosing me with migraines. He also introduced me to verapamil and predinose taper. Silly me, that first week I filled the script for the prednisone and not the verapamil. I got immediate relief from the prednisone but as soon as I started tapering off, and once I was officially off, I was introduced to the worst cluster of my life. My typically 1 to 2 headaches per day max was now pushing 3 or 4. I ended up taking my 4th 4mg imitrex shot in a day and thought I was having a heart attack. I ended up in the emergency room where they came me a heavy dose of IV benadryl (I have no idea why). For whatever reason, that day was the peak of my cycle and it got consistently better from that moment on. Was it the benadryl? I have no idea.
The past 3 years I have now taken verapamil during my clusters at a very low dose. 120-160mg total per day, spaced out through out the day. If I go higher, I get side effects, yet believe it or not I would get great results from it. I have a very low pulse, so that is possibly why I get the side effects. It kept my headaches less frequent and less painful. However, it definitely would lengthen my cluster from 3-4 weeks up to 7-8 weeks, but I was practically pain free aside from a morning headache taken away with coffee.
This year, I went back on my verapamil as the cluster came in, and for 4-5 weeks I was feeling great, just waiting for the nice mild cluster to go away as usual. Until... the headaches started getting more frequent, the pain level started increasing, and I found myself taking imitrex shots again. It's been heavy now for about 3 weeks+ and I am taking 1-3 shots per day. I was using the 3mg zembrace that my neuro had pushed on me a couple of years ago but I felt like it wasn't lasting as long in my system as the 4mg imitrex. This has been such an odd cluster, I have had multiple times where the headaches seem to be signaling an end, something I would notice as the start of the end of any other cluster, but then the next day they turn around and ramp right back up.
I went to see my neuro and he prescribed me emgality. After reading the reviews online it seems way too scary for me at the moment. I am willing to try most anything, but after my experience with prednisone making them even worse, emgality reviews give me the feeling that I could be opening up a new problem for myself. He said he prescribes it 4-6 times per month and hasn't heard of any side effects other than constipation. The internet forums say otherwise. Due to everyone on this website touting oxygen, I brought that up to him as well. He said that he felt it's an insurance issue to get it but he would do it for me. He also said that he found it does not abort headaches for his patients, it just kicks it down the road and they end up with rebound headaches. He told me he would prescribe me an oxygen concentrator at 7 liters per minute. Having read the forums I knew that he was not following the right protocol here. I spoke to a family member that is a PCP and he did me a favor and wrote me the oxygen script. It has been tricky to get it filled but I was able to get a couple of E Tanks to try out, along with the clusterheadaches.com mask. So far, my experience has been 4-5 hours of relief from the first hit, and then only 2-3 hours or less relief as I try to use the rest of the E tank for a second hit. This may be a great result for those sufferers who are getting CH every few hours, but for me, I am used to longer gaps in between my longer headaches, so 4-5 hours is kind of fitting the mold of what my neuro said about rebound headaches.
Last Monday (so today is day 8), I started loading with the vitamin D regimen. 3 days in, I randomly had a 24 hour headache free period. I couldn't believe it. I even felt a weird sensation of some head pressure coming in and then I felt it almost melt away. It was a unique sensation. Sadly, it was short lived and they came right back after those 24 hours. I've been taking benadryl on and off at night but without any consistency. I had a family trip this past weekend for 4 days so I was doing my best to battle through. The 24 hour pain free period was the night before and the day of my drive for vacation, so maybe the drive to a higher altitude or different allergens in the woods was a factor. None the less here I am, day 8, hoping to get a breakthrough with the Vitamin D reg.
Last but not least, just to throw another wrench into the mix here... I had covid in March of 2019. I did not have an awful case by any means, but I was certainly sick for a couple of weeks. However, I have lasting effects from it called post exertional malaise (chronic fatigue syndrome). I would feel fine on any regular day, but if I tried to exercise, I would become physically ill for 2-3 days after. Fast forward a year later, February 2020, I received my covid vaccination. I was very tired from the vaccine for a week. I never felt like I fully recovered and the chronic fatigue has been more prevalent on a daily basis, even without exercise, ever since the vaccine. I went to see a chronic fatigue doctor who ran blood tests on me. They believe that covid can re-activate dormant viruses in your system. My blood test results were done about 5 weeks ago from today, so they were taking in the middle of my mild cluster while the verapamil was still working well for me. The results showed a few pertinent things. I have a very high epstein barr virus levels in my system, (I contracted this virus about 12 years ago). I have elevated herpes 6 virus in my system. I have elevated histamine levels in my system. My chronic fatigue doctor wrote me a script for an anti viral to take to try to beat down the EBV and herpes 6, but I did not start taking it as I wanted to get through this cluster first. I am not starting to wonder if they are quite related.