I started getting major headaches around 2002 – it wasn’t until 2005 that my neurologist determined they were most likely cluster headaches. It’s been an up and down ride ever since.
I went through some particularly bad periods, getting 5-6 clusters a day but still somehow managed to function in the real world. For years I felt like I wasn’t really a cluster headache sufferer simply because they weren’t “bad enough” to admit I had the condition. I was simply a minor case and because I wasn’t debilitated by them on a daily basis that I had no real cause to complain. The reality is we all experience pain differently and there is no way to tell if my headaches are any different, less or more severe, or a different form of cluster headache. The point is we are all experiencing pain and the rest of the world typically thinks we’re making it all up or it’s not THAT bad.
I’ve been very lucky that I haven’t been chronic for a number of years. I’d like to think regular exercise has helped curb the crazies in my brain. I get a doozie once in a while, typically at night before bed time. I’ve taken myself off all of the insane medications and have been able to stick with melatonin 12mg at night to keep the dementors out. Every single day I secretly hope they’re gone or at least I get another couple weeks without going back to the 5-6 headaches a day.
So I’m still around, still experiencing pain but haven’t felt the need to use this blog as therapy in a while. I had some issues with attention deficit and decided to take myself off of my medication. I’ve been doing mental conditioning and physical exercise on a regular basis to help with my brain patterns throughout the day. The standing desk seems to help change my focus patterns when I’m working, too. I had to remind myself that the ADHD is something I can control with mental exercise – unlike the cluster headaches which I have none. I can at least find a middle ground with the attention part. 🙂
I’m approaching my 30th day on Vyvanse to help treat my adult ADD. The first couple of weeks I had some bad cluster headaches come through. Dropping off the doxepin seemed like the dumbest thing I could have done. Then I noticed a change – the cluster headaches started to dissipate.
I’m still feeling a shadow once in a while with some sinus drainage. But then it seems the actual cluster never hits. My pain has never been as bad as other cluster headache sufferers that I know but this was welcome relief. I’ve only read of one other instance of Vyvanse helping a cluster headache sufferer online. I’m going to keep an eye on this for sure.
I’ve noticed since I was young that I had a different way of experiencing the world. I see and feel everything around me and it’s hard to put into words how it is to not be able to focus at times. I had a process I followed in highschool that sort of worked but my grades weren’t as good as they could have been. College was easier as I was paying for it myself and going part time – the motivation was there to focus.
Work has always been a challenge but I’ve found ways to cope. I listen to music, turn off distractions, time box things. All of this was put into place without really having a name for what it was. I didn’t realize I had ADD. Maybe I had an idea but I didn’t want to be one of those people on legalized meth.
I started at a new job in July of this year and I’m working out of my house. I really like the job and I have a lot of great people on my team. I’ve noticed that my self-designed mechanisms I’ve used over time to keep productive didn’t quite work when I’m at home alone. I finally decided to talk to my doctor about it.
I was referred to a counselor and we talked about everything. It was pretty clear to her that my thoughts about me having ADD/ADHD was pretty dead on. I told her I don’t want to be on meds forever. I know how that is with the cluster headaches and didn’t want to add another one. I did say, however, that I want to see what it’s like having “normal” focus so I know what to work towards.
I’ve started on a low dose of Vyvanse and am starting a regimen of yoga, meditation and diet change. So far on day two I’m seeing a big change I’m focus. I took myself off of Doxepin to reduce interactions but I think I may have to go back on. Headaches came back with a vengeance.
More soon as this new adventure unfolds.
Two years have gone by since the last time I posted. A lot has happened.
Testosterone therapy was abandoned shortly after my post in June 2011. The results were fairly inconclusive and I couldn’t see spending close to $600/month for the medication. Doxepin has been the golden hammer, from what I can tell. I’m at 150mg/day at night and that seems to be a happy place for me. I had MONTHS of no pain whatsoever. I seem to be back on a cycle for the past 3-4 months but I’m at most getting 1-2 headaches a week of a fairly low level of pain.
It’s crazy to see that a cheap anti-depressant like Doxepin was the solution, at least for now. My neurologist has been awesome, taking suggestions I’m finding from others online and using it for my condition. The report from Diamond Headache Clinic seemed to help, even though I had felt it was useless. It was that report that indicated a treatment regimen including Doxepin so we tried it and it works.
I’ve come to learn that everyone is so very different. We all have so many variables with what we eat, breathe, and expose ourselves to every day. It takes time and patience to find something that can help you, so stay strong.
Can’t believe it’s been since March when I posted last. A lot has happened in that short amount of time.
My neurologist and I have continued with the testosterone therapy, increasing to 5mg/day and switching to Androgel from the Androderm. The patches were leaving a heavy residue on my skin and it was not fun having to wear a three inch metallic patch everywhere. At the 2.5mg/day we did not see any increase in my T levels via bloodwork. I will be following up with him in the next month to see if the 5mg is enough; we may need to increase it further if not. I did see some mild change in the headaches with the addition of the gel/patch but it hasn’t done enough yet.
Dropping Topamax has been great. I have stayed on Zonisamide but would prefer to be off of it since I am on such a low dose and I don’t think it’s helping. We have added Doxepin, an anti-depressant, and I think I’ve had the most positive results from it. I’m on the lowest dose possible right now, and I suspect that will be increasing next time I meet with my doc.
I ended up going to the Diamond Headache Clinic in Chicago in April, and met with Dr. George Nissan – a well known DO specializing in cluster headaches. The visit was pretty normal, getting my entire history in verbal form and documenting in the computer took the most time. I brought MRIs from 2003 and 2005 with me in negative form, but he never looked at them. After being with his assistant and him for an hour total at most, he came to the conclusion that I should be admitted to their ward at St Joseph’s Hospital nearby for a 5+ day stay to break my cycle and begin treating the cluster headaches. He felt the treatments we’ve tried were valid but felt it was time to do an IV wash through of a number of things to stop the headaches for a few days to let my body reset for this cycle. I ended up not going through with the visit, as I was told specifically not to notify my insurance and to treat it as more of an urgent care scenario. I couldn’t get the time off of work easily, so I skipped it. From what others have said online, that week there could have billed $50k easily to my insurance. Who knows what wouldn’t have been covered.
I did get the clinical notes from my visit with Dr. Nissan and brought them back to review with my neurologist. That’s where we got the idea of going with Doxepin and also took his suggestion and did an MRI with and without contrast. Nothing too significant found, although there were some changes in white spots that the radiologist pointed out. My doc said that could be an indication of Multiple Sclerosis if I didn’t have a history of migraines – and the changes he saw were not significant.
So that’s it for now. I’m still having 1-2 headaches a day, but they’re bearable in the 4-7 pain level out of 10. I get the nasal drainage with the bad ones, and I use a single Tylenol for the ones I can’t handle. No NSAIDs for me any more as that was part of my problem to begin with.
I’ve been off of Topamax for about 11 days now and all I can say is, my world is back to normal. In the past, I found that Topamax was a good solution for my cluster headaches but not so much recently. I’ve been chronic since summer of 2010 having at least one major headache every day, totaling over 300 since I’ve been keeping better track in November of 2010. I did have the “Dopamax” effect where I couldn’t find words for everything immediately, but it was such a gradual process that I forgot what it was like to be normal.
My neurologist and I have decided to stop Topamax because I have been having vision issues, like the last time I was on it. Waking up in the morning I would get ghosting of images and my eyes in general would hurt all day long. This probably is related to the possible side effect of closed angle glaucoma that Topamax can induce. I had my eye pressures checked a while back and they were fine – but I didn’t again after increasing to 200mg/day.
The other thing I hadn’t realized is that Topamax seems to have been affecting my ability to develop software. You’re reading that right – it prevented me from finding the right CODE TO TYPE. I thought it was concentration issues or just the headaches in general but I think it has to do more with word association and the ability to think ahead of the code before programming it. Even a few days after being off of the Topamax I could tell something had changed and I was back to my previous performance levels of slinging out code and finding solutions to problems. I’d almost say that I’d rather deal with the cluster headaches than not have the ability to be a software engineer.
Anyone else have this type of experience?