Here's where we hang out digitally (online)
Hope that sheds a little light on the subject.
Tuesday, November 16, 2010
It's been a while since I've posted anything. Sorry for the delay. I have been pretty busy with school this semester.
I am still taking Verapamil, although I believe the efficacy is fading. I am experiencing headaches about twice a week now. Usually two full days of nicely spaced Kip - 6 or 7's every week. I lost my oxygen tank from Apria due to some pretty serious billing issues, so there's no immediate relief. I have been relying on Monster energy drinks to help alleviate the pain.
My neurologist is not keen on trying new things. He's stuck with the common drug treatments and not willing to work with me. I have since left his services. I am currently seeking a more headache oriented neurologist and I think I may have found one here in town. Now I have to convince my PCP that I need another referral in order for my insurance to help with the payment.
Hope everyone has pain free days.
Thursday, March 18, 2010
Update 3/18/2010
Well, I am dealing with constant daily shadows. Nothing over a k-2, but still annoying.
The Verapamil seems to be keeping them in check thankfully. Haven't had a full cluster attack in quite some time. Luckily the mind forgets that kind of pain; making it very hard to keep track of your headaches.
Getting ready for a Clusterhead meet 'n greet in Dallas this weekend. Should be really cool to meet some fellow sufferers.
The Verapamil seems to be keeping them in check thankfully. Haven't had a full cluster attack in quite some time. Luckily the mind forgets that kind of pain; making it very hard to keep track of your headaches.
Getting ready for a Clusterhead meet 'n greet in Dallas this weekend. Should be really cool to meet some fellow sufferers.
Friday, January 22, 2010
Depakote Done!
Well, after only 34 days on Depakote I have stopped using it. I had been experiencing some crazy side effects that I felt just couldn't be dealt with. Not only were the side effects disturbing to say the least, it was not helping in any way with my CH. Yet another epilepsy drug that doesn't work on my CH. These brain chemistry type drugs have all been a bust for me. I believe I am highly sensitive to their effects. For example, on merely 500mg/day of Depakote I was feeling the same side effects of those on more than 2500mg/day. The "fog of thought" as I like to call it, my hair falling out, bone aches and stiffness, and pretty unpleasant personal matters as well. That will be the last time I use a drug that was meant for seizures or brain chemistry alteration.
I have been on Verapamil for 3 years now with no horrible side effects. My Neurologist finally agreed with me on upping the dosage like all other CH patients. First stop, 720 mg/day with an EKG on Friday to see the effects on my heart rate. This is after all used to lower blood pressure in most people. Calcium channel blockers FTW!
Here's to hoping it works.
Perediablo
I have been on Verapamil for 3 years now with no horrible side effects. My Neurologist finally agreed with me on upping the dosage like all other CH patients. First stop, 720 mg/day with an EKG on Friday to see the effects on my heart rate. This is after all used to lower blood pressure in most people. Calcium channel blockers FTW!
Here's to hoping it works.
Perediablo
Sunday, January 17, 2010
Brand new blog
Day one of the blog. Let me begin by giving you a little background information.
I am 37 years old, and I got my first Cluster at the ripe age of 9. At the time, it was thought of as allergies. I didn't have another one until I was 23. This was my first cycle and lasted only 3 weeks with once per day attacks. Again I went into a remission until the age of 29. Then began the twice yearly cycles of spring and fall with 2 daily headaches for about 3-4 weeks. It wasn't until I was 34 years old that I was properly diagnosed with Cluster Headache syndrome. Only after seeing CH on a news program and bringing it up to my doctor was I evaluated and finally diagnosed. This after years of being told it was sinusitis or just my imagination.
For the past 2 years I have been a Chronic CH sufferer. 2 years with at least one attack per day and as many as 8. I have been taking Verapamil at 480mg/day for a little over 3 years. For the past several months the efficacy of the Verapamil has dropped to allow more painful and more frequent headaches. After running the gamut of drugs to add to Verapamil: Lithium, Topamax, Depakote. It is down to increasing the daily dosage of Verapamil in hopes of quelling the beast again.
That is a roughing in of my CH background. I will update this blog as often as I can to help make the public more aware of Cluster Headaches in order for a better understanding of them.
PFDN,
Perediablo
I am 37 years old, and I got my first Cluster at the ripe age of 9. At the time, it was thought of as allergies. I didn't have another one until I was 23. This was my first cycle and lasted only 3 weeks with once per day attacks. Again I went into a remission until the age of 29. Then began the twice yearly cycles of spring and fall with 2 daily headaches for about 3-4 weeks. It wasn't until I was 34 years old that I was properly diagnosed with Cluster Headache syndrome. Only after seeing CH on a news program and bringing it up to my doctor was I evaluated and finally diagnosed. This after years of being told it was sinusitis or just my imagination.
For the past 2 years I have been a Chronic CH sufferer. 2 years with at least one attack per day and as many as 8. I have been taking Verapamil at 480mg/day for a little over 3 years. For the past several months the efficacy of the Verapamil has dropped to allow more painful and more frequent headaches. After running the gamut of drugs to add to Verapamil: Lithium, Topamax, Depakote. It is down to increasing the daily dosage of Verapamil in hopes of quelling the beast again.
That is a roughing in of my CH background. I will update this blog as often as I can to help make the public more aware of Cluster Headaches in order for a better understanding of them.
PFDN,
Perediablo
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