So I’ve been dealing with…whatever I have…since I was 12. I’m 39 now.
I’ve read through these forums before, as has my wife, who is now pushing for me to trying a dosing protocol. I’m writing this now at the start of an episode.
the problem is, as I read everything about cluster experiences on here, I question whether it’s even what I have. I’ve been diagnosed with Clusters, but over the years that diagnosis has changed multiple times, with it most recently landing on Cluster again. What is challenging for me is that it feels like I haven’t seen another experience quite like mine on here. So, I write this hoping someone on here looks at it and goes “yup, your dr was 100%…that’s cluster”
- from 1996-2020, I’d have maybe 1-2 episodes a year. Extreme pain, always in my left eye. Out of all the experiences I’ve had, only once has it ever been in my right eye. A constant stabbing pain, maybe every 30-60 seconds
- pain typically worst at night, would last 1-2 days max, and typical experience landed me in the ER where I’d receive dilaudid, toradol and zophran. It would usually abort. Nothing else worked. Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?)
-eventually, this cocktail slowly stopped working for an immediate abort, and the pain would return resulting in a subsequent trip to the ER. Usually still would only last about 1-3 days.
-Feb 6, 2020, everything changed. I still don’t see any reason to believe I had contracted Covid, but suddenly my headaches were lasting 4-7 days. Constant pain, though not as intense as they’d been through my life. Began taking Celebrex. Similar in the fact that it attacked my left eye. I’d get maybe 4-5 days of relief and right back it came.
-in working with multiple specialists, I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration. Shortly after, I began a low dose of Lamotrigine. We slowly saw some longer periods of relief between attacks.
- after several trials, I eventually hit 200mg of Lamotrigine and had gone 8 months without anything. When I did get an attack, days 1-2 were minimal pain, but constant. Ibuprofen, Tylenol and Triptans were used. Days 3-5 became more difficult and sleeping through the night was nearly impossible. Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point. It would then wind down days 6-7. Total time, about 1 week.
- I eventually sought to see if scaling back on Lamotrigine would allow me to escape some of the side effects (difficulty maintaining a healthy weight, brain fog, reaching for words and coming up empty, tripping over words). I reduced to 150 under the guidance of my doctor and immediate popped one. We worked back to 200mg, but I began hitting them almost once every 2-3 weeks.
- I’m now on 250mg lamotrigine. I just made it 9 weeks and am starting an attack … day 2 and I know my nights are going to get difficult.
I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on.
moreover, I don’t even know if it’s truly what I have…clusters. The way they gradually increase in intensity and remain completely constant throughout those days. Every 30-60 seconds a thud or a stab inside my eyeball. Constant, even pushing through various pain meds. Increasing every day to a crescendo, before finally tapering to freedom. The anxiety waiting for the next one. Will it be a week? Or a month? Or finally a year?
i have no known triggers…even after all these years … except maybe stress. Possibly dehydration, though I do my best to stay on top of that.
does this frequency, and change in duration/intensity over time feel like a typical cluster progression during a lifetime? I don’t want to be concerned about a misdiagnosis before I begin thinking about dosing.
I assume if I do try dosing, that staying on daily Lamotrigine would be okay since it isn’t a blocker.
im sad, lonely and confused. I’m sure it’s cluster, but I just feel like you all talk about your experience differently. I just need to know I’m not crazy. Any kind acknowledgment one way or the other would go a long way … and I appreciate what you all are doing to try to improve the QoL for the others in this community.
