Starting out chronic or episodic. Noticing changes?

[kat_92]

Hey all, 

I was doing some more research on Ch just because now that it is officially part of my life I want to stay informed. I’m getting more comfortable telling people this is what I have. I no longer say migraines, stress headache etc. I am curious how many people in this group have noticed changes in their ch over time. Specifically, going from chronic to episodic, and visa versa. Intensity of ch over time? This is merely out of my own curiosity. I cannot find much about it through reading. I am trying to get first world experiences. 

Thanks!

Kat

[spiny]

Kat, my experience is this:

At 23 I began having one sided headaches daily. I had an EEG done, I had been knocked out prior - exactly three months. The EEG showed defective Beta waves. The doctors all scratched their heads and said 'try this' and then 'anything you need, just let us know'. At the time it was well known/assumed that repercussions from being knocked out occurred at three months. I had Elavil and one other pill to take. Thorazine prescribed as needed for nighttime hits. My headaches were always left sided and lasted about 20 minutes with a moderate level of pain that was boring into my head.They were daily. I stayed on this regimen for about two years. Then I dropped it as I was having no issues. Two years later they returned. Low level chronic. Not bad pain, but mess with your attitude pain. After five years, those went away when I decided to put my feet in screaming hot water for the duration rather than take their stuff. I then had a 10 year hiatus.

When they returned, I learned what pain really was. They returned one afternoon when I had just cracked a beer to look a the lovely mountains around me. I took a sip and then another. Then my head began to go crazy. I looked at the beer and though 'surely not' and took another drink. That was the last. The pain was shocking. The solution beyond me. I was terrified. It took about 24 hours for me to begin searching 'headaches'. It took about two days to see my normal doctor and get a script for Carbmazapine. Lived/survived on that for a while. Then I upped to dose as allowed, and had triple vision. Next up, the nueuro. Who happily proclaimed  that I had migraines. Nope. Oh yes. Take this and come back in two weeks. I took my husband, who changed the mans point of view right quick saying 'My wife is in agony every night at eight pm. I want my wife back!'. And that turned the light on for him. Then, I received proper treatment, so far as he knew. My hits were 2.25 hours long and occurred every 2.50 hours. So, fifteen minutes between the four night time hits of every cycle for 6 to 8  months of the year. It was hell. I became a person I did not like. I found Cjusterbusters. I survived. 

So yes. mine have changed over the years. But I have won the war. 

[devonrex]

Started out at about 3-4 a week chronic with every 2 weeks give or take I would have a full blown 10. Eventually they got up to about one a day or night as it may be with give or take one a week being a meltdown. I had tried some of the first line treatments by then, eventually got on topiramate aka Topamax, they dropped back to about 2-3 a week with several weeks between full blown ones and the occasional week off. Then, I got and passed a kidney stone, took it to the doctor and they took me off topiramate because that is a known side effect of it. Within a week or so going off, they began hitting me 3-4-5-6 times a day or more, with a full on or near 10 every couple days and the rest in the 7+ range, nothing has done much since, that was 5 yewars ago.