Posted by Dave Emond (205.188.192.28) on January 27, 2002 at 05:08:24:
Hello All,
Haven't posted in a while, been busy with OUCH projects. Sure are a lot of new names and some old ones I haven't seen for some time.
Strange question I have, might even be hard to describe:
I had been episodic for many years, my cycles ran from January through the end of March. This last years cycle never ended, and my neurologist has said I have gone chronic. Been through every preventative med, none have helped. Use oxygen and Imitrex Nasal & injections as abortives, but they seem to work less and less over time.
Okay, that was the background. Although I'm chronic now, I could swear I'm feeling like I'm back on my regular cycle too. While chronic, I could sleep more often, averaging up to 4 hours per day/night. (6 if I got a good rare sleep.) My chronic attacks were very randomly dispersed, unlike the timely episodic attacks.
It seems over the last couple weeks that I've returned to more timely attacks, pain levels higher and not sleeping much at all. Just like I remember from my episodic days past. This is the "normal" time I would usually go into my yearly episodic cycle, so I'm a bit puzzled. Is this common for chronics to have their usual bouts on top of the chronic stage? Then revert back to the differences in attack patterns and sleeping patterns once this cycle is over? Or, can I hope that this is actually a good thing and maybe expect I'll go into complete remission by the end of March? In my case, I believe the episode attacks are far more debilitating than chronic, although, I'd trade back to the 3 months of that hell, in trade for this everyday random attacks I've been through for the last year of chronic CH. In other words, I can function better as chronic than I can as episodic, but would prefer to be episodic again. So what are my real questions out of all this?
1. Do chronics get episodic bouts on top of the chronic, experiencing both at once?
(That's what I'm feeling.)
2. Is it likely that this is the beginning of the end and I'm heading for remission?
(Please, experienced replies only, I can take the truth. I appreciate, but don't seek "maybe so's")
3. No known answers to these questions?
4. Have I explained it well enough to understand what strange things are going on in my head?
5. Finally, anyone been there, done that? And have a clue as to what lies ahead?
You all are my family, and those who know me well, also know I don't seek sympathy. I do appreciate encouraging thoughts and support, however in this case, I'm looking for anyone who might understand what I'm talking about. Please take no offense my good friends who would wish me better days, I know you care. But, this post is quite serious to me and if there are any experienced answers, that's all I'm looking for at the momment.
My best to all always,
Dave