Topamax-Depakote day 3
Still very disoriented, I am having less visual weirdness today but I still am having problems focusing my eyes and also putting together a sentence. I would describe it as having a thought in my head but not being able to find the right words to say it... very unnerving for me.
Headache for most of the day getting a bit worse in the afternoon and evning, cluster-ish in nature.
posted by Murdock Scott at
4:12 AM
3 Comments:
Hey Doc,
13 years Cluster sufferer here. New cycle started 7 days ago while on vacation - typical post stress situational trigger, after almost 2 years in remission prior. My clycles usually last about 4-6 weeks so I'm gonna be useless 'til April probably.
Anyway, 4th day on 60 mg topomax 2x daily for the first time. + I'm on a lot more drugs - and I'm hip to the mental focus challenges you note, I.E. making sentences and thinking. But the whole course of treatment IS HAVING A POSITIVE EFFECT ON THE HEADACHAES! Bottom line: I'm catching my headaches earlier, like within 4 minutes, and they're stopping escalation within about 15 minutes and backing off maybe 2 out of 3 times. THIS IS HUGE! BEST OUTCOMES FOR ME EVER! So while I'm walking around a bit dizzy , a little nautious, a bit tingly, a little muscle weaky and definitley mentally challenged - to trade it all for the dramatic lessening of 2 out every 3 cluster headaches is a slam dunk you betcha!
Here's my whole whole course: 60 mg topomax 2X daily; 50 mg prednisone: 3 whole, 3 half but I'm almost all done here. 5 mg zomig inhaler as soon as I know it's coming, without hesitation. The zingers that wake me are too late I know but I snort the zomig anyway. I eat 2 alleve to lessen the zomig hangover. I grab the ice pack and press it as hard as i can from my eye across my head. I drink as much ice water as I can, especailly focusing on the most sensitive fillings. I pace. Boom. Sometimes the suckers are disipating!. Understand that in the past I have had virtually no success with hardly any course of meds! Maybe 1 out of 10 times in the past - but you hope you know?So either my body chemistry has changed some this go around - which doesn't make a lot of sense cuz I got another cycle that started - or the topomax, which is the only brand new component of my regimen, is tipping the scales for me. Whaddya think?
Hakimdaddy
By
Anonymous, at 2/28/2008 10:15 PM
Dear Doc and all fellow sufferers reading along:
I'm a 17 year cluster-sufferer. I'm currently somewhere in the middle of a cycle that started a little over a month ago, and the attacks only seem to be getting worse. This is probably the worst cycle I have ever had. It is definitely the longest. It's scaring me. I read about people having non-stop headaches for years on end. I don't know how they live. My heart hurts for them almost as much as my eyeball. I can understand very easily why people would kill themselves to escape these things, especially in that situation. With the way this cycle is going right now, I am very scared about the possibility of things getting worse and worse each year, until I end up with a headache that never ends. Kind of bringing religion into my treatment considerations, you know?
This is the first cycle I have actually gone online looking for stuff like this blog. I have to say I really appreciate your taking the time to do this and all the other related projects you and your wife are working on. Reading your entries breaks my heart as much as it gives me a sense of hope. I feel very much alone when I'm going through these attacks, but after reading this blog and others like it I feel a little less so. Knowing that doesn't make the headaches go away, but I feel some comfort knowing that there are people are working on this thing.
This is my first visit to this blog and so far I've only read the main page. I don't see any discussion of oxygen therapy. Have you tried this yet? My neurologist just started me on oxygen this week. The results: like everything else, it worked like magic on the first two or three doses, but since then the results have been mixed. Sometimes it still knocks the headache out within 10 minutes. Other times, the headache is completely unaffected by it - the headache even seems a little worse than before. It's important to note here that I am also on Depakote, Inderal, Imitrex, and Amerge. I will be speaking to my neurologist about it next week, but would be curious to hear of other people's experiences with it.
By
Anonymous, at 3/07/2008 7:03 PM
Hakimdaddy,
Sorry for the lack of a responce. I am not feeling very well the last few days. Glad to meet you. Sorry we have such a crappy thing in common. heh.
Sorry to about your headache free streak comming to an end. I had a long stretch of 14 months I think once and when it hit me again It was particularly crushing psychologically. I had started to allow myself to thing I was over them. :P
That sounds like quite a cocktail of meds you have there. I wasn't aware that zomig came in an inhaler nowadays. I might hit up my doctor to try that. I really hope its the Topomax thats working for ya, I am still ramping up to a full dose, but so far I am not sure it is doing much for me.
Please keep me posted on how effective you think its been for you. : )
Anonymous,
I am very sorry you are in pain, you know I understand just how brutal this affliction is. 17 years is a long damn time.
This is the first cycle I have actually gone online looking for stuff like this blog."
I am glad you took this step. Lots of people on the web with advice and information. Some useful, some not so much but most importantly I think is meeting people that understand what it is you are going through. No one who has never had a cluster headache could really comprehend what its like, we cant really expect them to.
Stop by any time, I hope my ramblings offer you some small insight now and then.
The picture on the front page of my blog is of me sucking on Oxogen. I would say It was pretty hit and miss for me as well. I have many many years worth of notes that are posted on this blog and the oxogen is mentioned somewere... heh. sorry I don't have stuff tagged like I should. Its on of my future projects. : )
Doc.
By
Murdock Scott, at 3/09/2008 5:43 AM
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