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Budbuds Mommom

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what headache?

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chronic ch help
Oct 21^st, 2012 at 5:51pm

So I'm having some trouble finding a prevent. I've tried a bunch most of which make things worse. DHE and Indomethacin make my ch MUCH worse. Depacon IV has proven effective multiple times in aborting my entire cycle for 1 to 4 months but it's difficult to set up. Currently I'm taking Gabapentin 300mg 3x/day and Orphenadrine ER 100mg at night. I also use O2 to abort which is awesome. Imitrex only works if I get my ch to a kip 5 or lower. I've used the following as possible prevents with no luck: Elavil 100mg, Epitol 200mg, Levetiracetam 250mg & 500mg, Lexapro 20mg, Nadolol 40mg, Mobic 15mg, Oxcarbazepine 300mg, Zonegran 100mg and these gave me intolerable side effects:Diclofenac XR 100mg, Effexor XR 75mg, Topamax 100mg, Verapamil 120mg, Xanax XR 1mg. My neuro is slowly increasing my gabapentin b/c it's the only med that has shown any improvement. Just wondered if anyone had suggestions on if I'm maybe on the right track or what else I can try. I did try lithium for a couple weeks (not near long enough) but I hated the side effects so I stopped. Oh and I did check out clusterbusters but... I can't risk my job with "alternatives", at least with missing time I have FMLA.
Thanks!

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Kevin_M

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Re: chronic ch help
Reply #1 - Oct 21^st, 2012 at 6:53pm

Budbuds Mommom wrote on Oct 21^st, 2012 at 5:51pm:

So I'm having some trouble finding a prevent. I've tried a bunch ...

Verapamil 120mg,

Just wondered if anyone had suggestions on if I'm maybe on the right track or what else I can try.

Though you've tried verapamil, 120mg is too low a dosage to say it may not work. To get a handle on clusters, I've typically needed to get to a 480mg - 640mg/day range and as high as over 900 once or twice. It doesn't have to stay at that level, but to arrest the hits of a cycle, it may need to get out to that range awhile to stop them. As an episode begins to leave, the verapamil can be lowered gradually.

But no, verapamil would not work at 120mg/day. That would be a starting dose and increased weekly by that amount, otherwise it is close to say it was started, but not tried to see if it can be effective.

It may be worth a try again if it is increased gradually and any side effects could be tolerable.

I'm not experienced with the other preventatives mentioned, and a lot are unfamiliar to me.

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« Last Edit: Oct 21^st, 2012 at 7:01pm by Kevin_M »

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Budbuds Mommom CH.com Junior Offline what headache? Posts: 39 Indianapolis,IN Gender:	Re: chronic ch help Reply #2 - Oct 21^st, 2012 at 7:01pm I can't handle verapamil at 120mg let alone higher.
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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: chronic ch help Reply #3 - Oct 21^st, 2012 at 7:03pm Budbuds Mommom wrote on Oct 21^st, 2012 at 7:01pm: I can't handle verapamil at 120mg let alone higher. I see. That's why you stopped there.
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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: chronic ch help Reply #4 - Oct 22^nd, 2012 at 6:49pm Sounds all too familiar to me... I had problems finding a prevent also. Busting was the first, and hopefully continues to work. Not sure what your issues are with work, drug tests? Your comment on Imitrex makes me wonder if you are using pills, nasal spray or injections? Pills are pretty much worthless for aborting.
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Budbuds Mommom CH.com Junior Offline what headache? Posts: 39 Indianapolis,IN Gender:	Re: chronic ch help Reply #5 - Oct 22^nd, 2012 at 8:01pm I'm a pharmacy technician so yes drug test all the time. Imitrex is injectable, u r right pills and nasal spray is worthless. So I don't know why but for some reason if my ch is more than k5 the imitrex seems to increase the intensity weird huh?
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ttnolan

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beats me

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Re: chronic ch help
Reply #6 - Oct 23^rd, 2012 at 6:00am

Ya that is weird, I never had that happen... had it cause rebound HA.
Since you are a pharmacy tech you may have a different situation or information, but I was under the impression drug tests didn't check for psychedelics unless specifically asked for (hard to do)... and having a half life of only a few hours, you could bust Friday night and be clean by Monday?

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jon019

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Re: chronic ch help
Reply #7 - Oct 23^rd, 2012 at 11:47am

Budbuds Mommom wrote on Oct 22^nd, 2012 at 8:01pm:

Imitrex is injectable, u r right pills and nasal spray is worthless.

Hi BBMM,

Welcome aboard.....gonna have to disagree that NS are worthless....maybe for YOU...but I didn't see any in your meds list. I find that imitrex injects make me feel "ooky" ...but Zomig NS is my abort of last resort (following O2 and energy drink ) and is 99% effective,
with few if any side effects. Danged expensive and always a battle with insurance companies...but just knowing its there, if I hafta, is a HUGE comfort....

Best,

Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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Budbuds Mommom CH.com Junior Offline what headache? Posts: 39 Indianapolis,IN Gender:	Re: chronic ch help Reply #8 - Oct 23^rd, 2012 at 1:35pm Does anyone else have issues with rainy days? I could use my ch to predict the weather. Any ideas how to prevent?
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Budbuds Mommom CH.com Junior Offline what headache? Posts: 39 Indianapolis,IN Gender:	Re: chronic ch help Reply #9 - Oct 23^rd, 2012 at 1:36pm Does anyone else have issues with rainy days? I could use my ch to predict the weather. Any ideas how to prevent?
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wimsey1

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Re: chronic ch help
Reply #10 - Oct 24^th, 2012 at 12:34pm

Budbuds Mommom wrote on Oct 23^rd, 2012 at 1:36pm:

Does anyone else have issues with rainy days? I could use my ch to predict the weather. Any ideas how to prevent?

How to prevent rainy days? Or chs? I know, clusters. You have a daunting list of failed meds, but I want to say this as gently as I can...you didn't stop them because they didn't work but because you didn't like how they felt in side effects. I didn't like how topomax made me forget, but I stayed with it for a year hoping it would work. I don't like the side effects of verapamil, but I've been as high as 640 and am now at 460, a little less but still works. It's a trade off. If you're episodic and your cycles are short, I guess you can get away with only good aborts. But I'm chronic, and I need something to act long term. So, I'll put up with annoyances as a tradeoff to dulling or stopping the suicidal pain of my cluster routine. blessings. lance

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Budbuds Mommom CH.com Junior Offline what headache? Posts: 39 Indianapolis,IN Gender:	Re: chronic ch help Reply #11 - Oct 24^th, 2012 at 1:35pm Let me be more specific I guess. Diclofenac XR 100mg - gi bleeding, Effexor XR 75mg - suicidal, Topamax 100mg - numbness in face and hands, Verapamil 120mg - bp too low, Xanax XR 1mg - extreme irrational anger.
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AppleNutClusters

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Re: chronic ch help
Reply #12 - Oct 27^th, 2012 at 4:08pm

Speaking to the side effects issue... I would endure practically any SE's as a trade-off to stopping my attacks. But my doctor wouldn't allow it. When I swelled so badly on verapamil (at a low-ish dose), he did not feel safe letting me continue. We're talking full-body swelling, bad enough that I couldn't get any shoes on. Ditto topamax, only the issue there was severe weight loss. I'm still searching for a good solution. You have my empathy.

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Giovanni

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Re: chronic ch help
Reply #13 - Nov 3^rd, 2012 at 6:22am

I agree. You will ultimately have to figure if the side effects are worse than possible reduction in pain or absence of headaches. The best combo that I had was verapamil @480 ER and Lithium 360 ER. I had gone (several years ago) over a year PF with this combination. John

How to prevent rainy days? Or chs? I know, clusters. You have a daunting list of failed meds, but I want to say this as gently as I can...you didn't stop them because they didn't work but because you didn't like how they felt in side effects. I didn't like how topomax made me forget, but I stayed with it for a year hoping it would work. I don't like the side effects of verapamil, but I've been as high as 640 and am now at 460, a little less but still works. It's a trade off. If you're episodic and your cycles are short, I guess you can get away with only good aborts. But I'm chronic, and I need something to act long term. So, I'll put up with annoyances as a tradeoff to dulling or stopping the suicidal pain of my cluster routine. blessings. lance [/quote]

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