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Topic: Rx Madness (Read 461 times) |
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Fox
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I've been lurking on this site for a while and I guess it's time to chime in and say THANKS. The information I've found here has been very helpful.
About me...
I am male, 47. CH started in my early 30s. In my first & second episodes I didn't know what the hell was happening to me. Back then doctors thought I had sinus headaches. Eventually I found out about CH and convinced the doc it was CH, not sinus or migraine.
My CH episodes run for 3-5 weeks, then about 20 months PF before next cycle. Last cycle was April 2004. Doc prescribed Indomethacin, which did zilch. Imitrex (oral) helped to abort CH if I caught them early. Next we tried prednisone, which stopped them cold at first, then just a few shadowy breakthroughs as the dose dropped, and then the cycle was over.
This current cycle started January 2nd (Happy New Year, Fox!). Imitrex has helped abort some nasty CH, but then started contributing rebounds. Doc prescribed prednisone again, but shadows broke through from the start of the course, and severe CH broke through when the dose dropped. Doc extended prednisone (but only a few extra days - can't have much of that stuff), and added Rx for Topamax.
The past 3 days I have had no CH, but last night some shadows were getting strong. I'm near the end of the prednisone course, at low dose, and also nearing the end of my usual 3-5 week cycle.
My latest issue is the Topamax - the stuff is weird, and I'm not sure if it's helping (since I also have the prednisone boost). I drink 3 to 5 liters of water a day (peeing every half hour), and I'm still dehydrated. Topamax has also turned me into an idiot. Between the long periods of content stupor, mixed with numerous confused, stupid mistakes, I feel like I have fast-forwarded into senility. This is at 25mg a day, and doc says I should increase to 50mg the second week (which is tomorrow).
If I have no more CH after the prednisone (3 more days), then I may cross my fingers, count my blessings, and say this episode is ended. Buh-bye Topamax. If CH continues, then I gotta go see a neuro, before I completely lose my mind on "Dopamax".
Thanks again for your support to all CH sufferers. I wish us all peace and comfort.
Cheers,
Fox
PS The recreational drugs of my youth ain't nothin' compared to the roller-coaster madness of some of the stuff my doctor has prescribed (for CH and other things). Ask your doctor what ______ can do for you! Side effects include...
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E-Double
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Re: Rx Madness
« Reply #1 on: Jan 22nd, 2006, 6:38pm » |
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YOU nailed my DOPEYMAX experience.
I got off off it quickly!
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but
demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Fox
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I want to order a pizza to go and no anchovies.
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Re: Rx Madness
« Reply #2 on: Jan 22nd, 2006, 8:18pm » |
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Thanks, Eric. The information and links are interesting. I'll keep melatonin and O2 in mind (hopefully for next episode). For this one I'm hoping the prednisone has nixed the beast and/or the cycle reaches its 'usual' end. Although this round has been unusual, with CH occurring at odd times (not my usual nocturnals). Methinks the Imitrex was causing some of that.
Thanks again for your support. Keep well.
Cheers,
Fox
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Guiseppi
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Re: Rx Madness
« Reply #3 on: Jan 22nd, 2006, 10:47pm » |
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Good luck finding a med that works. I used prednisone too. It works 100% as a block but the side effects are a bear. I now use 900-1200 mg of lithium when I am on cycle, as I currently am! It blocks 70-80%, oxygen pretty well dumps the remainder. The only real side effect to lithium is for the firt 2 weeks you pea.....A LOT. Like every hour during the day, every 90 minmutes while you try to sleep! That's been about it for side effects for me! Hope you find something that works as well for you.
Guiseppi
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Fox
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I want to order a pizza to go and no anchovies.
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Re: Rx Madness
« Reply #4 on: Jan 26th, 2006, 2:35pm » |
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I stopped taking the Topamax 2 days ago because the side effects were too much for me. I am starting to think more clearly again.
A few CHs struck in the early AM while still on the prednisone and Topamax, so I made an appointment to see a neuro. The appointment was today, and I've been CH free for two days, just a few mild-to-medium shadows. The neuro is a very nice man, and was surprised I knew so much about CH. He said few people walk in with them, knowing what they actually are. Thanks to this great web resource and network for sharing valuable knowledge.
Neuro did not believe Topamax was an effective way to treat my clusters - he said it takes too long for it to do much (my cycle typically runs 3-5 weeks). Plus I was having a rough time with that drug, so he supported nixing the Topamax.
He agreed with the prednisone treatment my GP had prescribed (but suggested more days at a higher dose in the beginning), and prescribed Imitrex injection instead of pill. He thought the Trex pill was slow/ineffective for CH. I believe I went with the pill over injection for insurance reasons. We'll see what happens with this Rx.
Then we discussed O2, which the neuro says is effective but 'clumsy and incovenient', and isn't his first choice. Also can be tricky with insurance? I argued that I might prefer it anyway to a med like Imitrex, which seemed to increase the frequency of the CHs. TBC. Beta and calc channel blockers were other options. TBC, at next cycle, unless this one charges up again.
Neuro has scheduled an MRI, mostly to rule out other causes, as he thinks I'm likely healthy outside the CH problem.
I am crossing my fingers that I am at the end of this cycle (I said the same thing a few days ago, then back they came). Still glad I finally went to see a neuro, and may get a jump start on managing/treating the next cycle.
Peace and comfort to all,
Fox
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RichardN
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Re: Rx Madness
« Reply #5 on: Jan 28th, 2006, 2:04am » |
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Hi Fox and Welcome
Tell your neuro you can stand a little "inconvenience" and get a script for 02. I did notice he agreed that 02 is effective . . . damn right . . . for about 70% of us and you owe it to yourself to try. I can't take Imitrex (arterie blockage and high cholesterol) and 02 is my only abortive. Save the trex for the attacks the 02 doesn't reach.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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