Tolerance of Topamax

I have been a space cadet.

I think it was the combination of the topamax and Depakote that was really giving me fits. I still feel quite a bit loopy with just the Topamax but its better that being on both by far.

So how "out of it" does Topamax make me? Hard to Judge... Cluster cycles themselves make me feel that way, so the only way I could really know would be to stop taking it and see how my cycle is at the moment without the meds. I'm pretty sure the plan is for me to stay on some preventative for the rest of my life.

What the hell should I to do? Stay confused in between cycles and hope to prevent new ones or enjoy my potential "Time off" to the fullest. ugh.

Topamax day 4: Cluster Pain Pushes Back Up

I don't know what to make of this but I have had sort of a "relapse" yesterday.

A bit of background...
Over the last few years my cluster cycles have taken forever to "wind down" and during those long slow curves I get what I call my long and low attacks. This can be described as pain in the cluster area that feels like a typical mild attack but lasts for hours instead of the usual 45-90min. These long attacks are never over around a 2-3 on my scale an are most likely to be about a 1. They are never severe and usually come in the afternoon as opposed to my severe attacks which come around 2-3 am. I try to describe it to people like a a spring... the harsh attacks are when the spring is compressed the long and low attacks are when the spring is relaxing and when the spring is filly relaxed... it is a straight line and I am out of my cycle. I sometimes think that I report these or notice them more due to my reluctance to take pain medication. Maybe other people are getting them but are wisely taking meds that let them not have to deal with moderate pain.

So, I had a bad cycle right in the middle of trying the Depakote but the bad part of it didn't last very long and I started the long wind down that I have grown accustomed to. While taking Depakote I didn't perceive these long and low clusters as much. I sorta felt like they were more wavy and spiked, and in recent days I was feeling like the cycle may be over.

Yesterday I got hit with a good old level 2 behind the right eye, long and low classic 2pm start time lasted most of the evening.

Today I can feel it again... So either I never fully left my last cycle and these are just the dying pangs of it that Topamax fails to suppress as well as Depakote did, Or I an starting a new cycle already.

Off The Depakote

So tonight was the first night that I am taking the full dose of Topamax and no Depakote. We will see how that goes. The last few days have been better as far as headaches go, but like clockwork the fatigue has set in. Today I had the "Strange Fatigue in the legs" feeling I have described in my posts before and all through the day I was just "conking out" even though I have medication to prevent daytime sleeping due to my sleeping disorder... well, I guarantee you that someday they will discover that my headaches, odd sleeping behaviors, Learning disorders, and tendency to get headaches of every kind at the drop of a hat are all part of the SAME neurological disorder.

Mark my words.

Ack Just fell asleep... sitting up on the floor hunched over my keyboard at the coffee table. No real warning I was just writing this then I was dreaming about getting kicked out of a 7-11. I bolted awake because I think I wasn't breathing well and here I am wide awake again.

Someone really needs to do a study me, I wouldn't mind making my living as a freak of science... Oh did I mention that my triglycerides are like 12 times what is considered high but all my other cholesterol and such is normal? and I am not some huge mountain of a person... just a bit typically overweight. Its just some odd genetic mishap.

I think I don't conform to my doctors word view of what a living human being should be. lol

A disturbing tought...

I am still in pain, my wife said I was moaning the entire time as I tried to sleep for a few hours this morning.

I think this is unlikely but I found myself wondering this morning if the migraine I was having now was the same one I was having for weeks and weeks before I started the Depakote.

I found myself wondering if this was my new "normal" state. If the part of my brain that was malfunctioning and causing migraines is now permanently malfunctioning and the Depakote was the only thing keeping it in check.

Like I said, I doubt that is what is going on... at least I hope.

Just to remind readers... I am a long time cluster sufferer, I hate to confuse things by talking about migraines here, but recently I have developed pretty severe migraines as well. They are significantly different in feel and intensity but can also be nearly as annoying in some ways, like the fact that they don't go the hell away. I am used to Clusters... I have learned to deal with that beast. But migraines thats a totally different skill set. You know how after a Cluster breaks, how sometimes you can feel so much relief, the pain just falls away, leaving you with all the adrenaline and endorphins pumping. I have to admit sometimes I feel almost good after an attack. I feels like I should not have survived, yet I did...

Migraines are nothing like that... just a boring long banshee wail of really annoying pain that makes it hard to move, think, enjoy anything... for long long long stretches of time. Oh, and just for fun the banshee kicks you in the side of the head now and again for fun. When the headache does die down, it takes its own sweet time.

I am afraid that my future is to be filled with a rotating lazy susan of severe headache pain flavors. Yay!

Dazed, Confused, and Very Behind On Posts...

I am really out of it the last few days. I am way behind on posting about my med switch. Feeling like my sense of time is way out of whack.

Last night I stepped down to 500mg Depakote and stepped up to 75mg Topamax daily. I Really don't know any more if I was more "confused" on the Depakote than I am now... at the 2000mg I recall being really freaked and just disoriented but I don't really recall feeling that unhappy about it. This last few days is just pissing me off.

It could be the effect of the "crossfade" between the two drugs. Seems like a weird way to do it if you ask me, Having two different mind effecting drugs in your system at the same time... but I am trying to be a good patient and do what the doctor tells me.

So For the last few days I have had a steady annoying low level headache that is on the side I get migraines and has the characteristics of a migraine. Therefore if it walks like a duck....

I think I still have fading weak waves of my "long and low" pain in the cluster area but no recent intense cluster attacks so I would say that the cycle is "done-ish" for the moment. This "long and low" pain in between intense attack cycles has made me wonder recently if I am in the first stages of becoming chronic.

Also about a week back I had scalp sensitivity n the back left of my head. I also had the same "raw nerve" feeling at my left eye and my left ear... for around 3 days I would get very sharp shooting pains that would make me cry out if I was not carefully paying attention. Now that I think of it, the migraine I have now is most likely the same pain... just "spread out". Meaning I have had this headache for a week. No wonder I am grumpy emotional and behind on posting to my blog. : P

Sure its not a cluster every night at 3am... but dammit, what the hell should I get clusters AND migraines... that is really not cool.
As I tell my wife sometimes, "If there if such a thing as Karma, I must have done something REALLY evil in my last like to deserve this."