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shabada
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Experience with preventative medications
« on: May 10th, 2006, 11:04pm » |
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I have now had clusters for about a year and a half. I was originally put on verapamil at small dosages. As time went on my dosages increased. I was up to 360 mg which for most people is nothing. Months down the road I began to feel fatigue, sweats, off balance, and many other side effects. I am now being told that topamax is an alternative medication that at small dosages will have minimal to no side effects. I am wondering if anyone has experienced the same situation? If so, did a change over create success in dealing with the pain? Also, do you feel topamax has limited or no side effects? I also want to say that I know people have this problem at much worse stages and different degrees and I want to say I can definitely relate to your pain. Please, if anyone has any information or feeling towards my questions please respond and thanks for your time.
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Richr8
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Re: Experience with preventative medications
« Reply #1 on: May 10th, 2006, 11:28pm » |
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Everyone is different with these meds. I did not tolerate Topamax well and switched back to Verapamil, however, i am sure thre have been a couple of folks here that have hd succes with Top. Unfortunately, mucjh of this is trial and error.
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Rich
...because yesterday is history and you never know what tomorrow will bring.
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Gator
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Re: Experience with preventative medications
« Reply #2 on: May 11th, 2006, 2:15am » |
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Welcome to the asylum. Sorry to hear the verap is going screwy on ya. You will find that Topomax is like everything else - works for some, not for others. Many say it makes them dumber than a bag of hammers. Others have experienced kidney stones because of it. For others still, it is a godsend. It does seem to work with less severe side effects if started at a very low dose and slowly increased until it is effective (or not) or the side effects make you want to quit taking it. Your doctor will make that call, though.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Good luck!
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pfunk
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Re: Experience with preventative medications
« Reply #3 on: May 11th, 2006, 4:06am » |
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I was on topamax for a while and it seemed to be working great, but did make normal brain functioning sort of screwy. Right about the time I felt it was really working, I developed those forementioned kidney stones. The only pain I've experienced that is worse than those stones is this dreaded BEAST so many of us have grown to know and hate. Ihave since switched back to verapamil and it seems to be doing the trick as I have been HA free since Feb. 23. If the topamax works and you are licky enough to not get the side effects, go with it. I agree fully with Gator that when it comes to preventatives it is pretty much trial and error until you can find the one for you, Best of luck and pain freewishes. Keep us posted.
Pfunk 
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unsolved1
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Re: Experience with preventative medications
« Reply #4 on: May 11th, 2006, 8:53am » |
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You might as well hear both sides of the story. While I agree that it seems to help some people with little or no side effects, many people (myself included) did not tolerate it well at all.
I was on it for about 11 months or so. I was dazed and confused to say the least. A computer science major (a junior in college) that could not calculate 4th grade math  . I wrecked my car (couldn't drive very good). Then came the Kindey Stones ... TWICE. I had to stop taking it. It was killing me!
Some of us around here call it "Dopeymax".
Hope you have better luck with it.
UNsolved
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Katherinecm
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Re: Experience with preventative medications
« Reply #5 on: May 14th, 2006, 8:20pm » |
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Topamax is the best preventative I've tried. At first I had lots of side effects, especially tingly hands & feet. I felt really high at first, um how can I put this delicately? turned on all the time. I had terrible balance and would stumble just walking in my house. The scariest thing was one night I went on a walk I started having visual side effects. Not hallucinations really, more like effects of light. Multicolored starburst light effects around lights when walking in the dark, almost like fireworks. Dark spots in my vision that went away when I would blink for a couple of minutes in light. Exercise seemed to make it worse. I lost weight (not much appetite) and had a hard time coming up with words sometime. I am thirsty all the time and even got a little acne, which I attribute to the medicine's acidifying effects. One good side effect is that I take it before going to bed and it allows me to sleep a LOT more than I could previously, with very minimal midnight hits.
My neuro had me back off on the dosage for a week or two to decrease side effects then slowly taper up. At this point am prescribed 300mg 2x/day (neuro says it's an epilepsy dose). I suspect maybe I am developing some sort of tolerance to it, because even though the number and severity of hits has decreased in general, recently it seems that I'll have a couple of severe hits a day, typically in late afternoon or evening. Have shadow hits all throughout the time I am awake, but less and less awakenings in the night... Of course, this could be because my dose is enough to knock out a horse!
Katy
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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ddj
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Re: Experience with preventative medications
« Reply #6 on: May 23rd, 2006, 10:36pm » |
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I have to agree with Katherinecm, Topamax works well for me in this cycle. It started in late March and I was first prescribed with Neurontin. Neurontin worked well in the first 2 weeks, then I found my headache was getting worse, and I couldn't even go to school. My neuro then prescribed me Topamax. I took one before bedtime, and one right after I wake up. I think I am lucky, I have been pain free with Topamax for 1 month already. Yes, there are side effects like others have mentioned: fingers & toes tingling, thirsty all the time, and hard time coming up with words. I have not experienced with the kidney stones yet b/c I drink a lot of fluid myself. One thing I want to mention is that Top makes me harder to fall asleep than usual.
Only few more days my cycle will end, then I will be stop taking Top and I will see what happen!!!!
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