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        Cluster Headache Help and Support >> Cluster Headache Specific >> Priceless!
        
(Message started by: Superpain on Mar 16^th, 2007, 9:52pm)

Title: Priceless!
Post by Superpain on Mar 16^th, 2007, 9:52pm

All in a week!

$40 for O2...
$420 for imitrex sprays or $1155 for shots...

$10 worth of prednisone!!! PRICELESS!!!
Take that Beast!!! [smiley=laugh.gif]

Mushrooms really helped a few times, but the last time they didn't work at all and I've been getting my ass kicked BAD for the last month. I finally saw my neuro (or at least his P.A.) and get scripts for imitrex and pred... My, My how imitrex has gotten more expensive! They must be running low or something. ::) $225 for 6 sprays or $165 for 2 shots! :o With no insurance...

But thank God for prednisone! Going on 24 hrs without a hit!!! WooHoo!!! 8)

Title: Re: Priceless!
Post by Lobster on Mar 17^th, 2007, 3:13am

Pred rocks. Your nuts will fall off if you take it more than 10 days, but it rocks up until that happens.

Title: Re: Priceless!
Post by TonyG1 on Mar 17^th, 2007, 10:18am

on 03/17/07 at 03:13:45, Lobster wrote:

Pred rocks. Your nuts will fall off if you take it more than 10 days, but it rocks up until that happens.

Lobster, is that like, "... and on the 11th day, all creation as we knew it changed forever. The land was covered by darkness. The hordes of screaming Eunuchs fell upon society like a pestilence, obliterating all who would dare oppose them with a voracity never seen before ..., etc., etc." ;;D ;;D

http://bestsmileys.com/weather/3.gif

Title: Re: Priceless!
Post by Guiseppi on Mar 17^th, 2007, 10:25am

Pred rocks. Your nuts will fall off if you take it more than 10 days, but it rocks up until that happens.

Dang........that's where they went....my brother told me it was the whole marriage thing but this makes much more sense!!!

Guiseppi

Title: Re: Priceless!
Post by ClusterChuck on Mar 17^th, 2007, 10:39am

on 03/17/07 at 10:25:39, Guiseppi wrote:

The first thing a wife does is take you nuts, and stores them away, until she needs them. YOU are not allowed to possess them.

(any wonder why I am gay?) LOL

Chuck

Title: Re: Priceless!
Post by Rosybabe on Mar 17^th, 2007, 2:48pm

[smiley=laugh.gif] [smiley=laugh.gif] ;;D...poor guys.. ;)

Title: Re: Priceless!
Post by Superpain on Mar 17^th, 2007, 3:41pm

Yeah, Dooney & Bourke has a special little pocket that my nuts already reside in. ;)

Title: Re: Priceless!
Post by chewy on Mar 17^th, 2007, 7:05pm

Are you on a preventative?

Title: Re: Priceless!
Post by Superpain on Mar 20^th, 2007, 7:20pm

No. Verapamil made me break out real bad last time. So I'm just doing the pred first, and if hat doesn't work I may try the verap again.
So far the pred has cut me down to 2-3 hits per day, mostly at night. It's a vast improvement over the 10-15 I was getting, but I'm still getting real tired of it...

Title: Re: Priceless!
Post by Kevin_M on Mar 20^th, 2007, 8:27pm

on 03/17/07 at 19:05:48, chewy wrote:

Are you on a preventative?

Good question. 10-15 hits a day seems unusually high for CH and a pred taper extremely short. Oxygen may not be adequate alone on all those hits and trex without insurance isn't practical with an O₂ bill out of pocket.

Quote:

I finally saw my neuro (or at least his P.A.) and get scripts for imitrex and pred...

I'm surprised no prevent was attempted with the pred, which doesn't have a good track record of ending cycles getting hit at this rate. If your hit durations are short with that many per day, it could be a similarly painful variation that has a medication for prevention, which I've seen mentioned here but can't recall but I'm sure someone here is familiar with.

Title: Re: Priceless!
Post by chewy on Mar 20^th, 2007, 9:28pm

Quote:

I'm surprised no prevent was attempted with the pred, which doesn't have a good track record of ending cycles getting hit at this rate.

You got that right. Pred without a prevent has never been successful in breaking a cycle for me and I've done many years worth of pred tapers. I wouldn't suggest a pred taper without a preventative.

Title: Re: Priceless!
Post by Superpain on Mar 21^st, 2007, 1:26am

Well, first I think it's CPH you're referring to...
I don't have CPH although that's been suggested by more than 1 person around here. My headaches aren't short. They have been sometimes in the past,and are occasionally, but unchecked without an abortive they probably last an avg of 25-40 min lately. I just get hit ALOT when my cycle matures. I'd say I'm past 75% of the way through this cycle and it started over a year and a half ago. This is typical for me. I go chronic for a year and a half or so, they build up till I'm getting hit sometimes up to 20 times a day for the last couple of months, back to back headaches with 20 min to 1hr breaks in between... Then they go away for a while. My last remissin was about a year and a half. Oddly enough the last headache I had from my last cycle was the night after my wedding 3 yrs ago on 4/5/04. It's been almost 3 yrs and the time has been split. I'm guessing I have 2-3 months at the most left on this cycle. I'm hopeful it's going to be a little less, I think maybe a month due to the frequency I was experiencing before the pred...

I understand the confusion about skipping the preventative, but the verapamil really fucked me up last time and I'm only going to use it as a last resort.

If nothing else, the pred has provided me a nice lull, for sure. That coupled with trex spray has helped me regain some sanity and be able to get fairly decent sleep which is by far the worst part of having clusters. I'm on 22 yrs of ch and I'm well aquainted with the pain. For many years, up till finding this place in '03 or '04 I never had any abortive (except for stadol), so I definitely do not like dealing with the pain, but I've had to... It's dealing with the pain all night long and going months without sleep that kills me!!!

I use industrial gas so it's cheap and it is effective on %95 of hits, but at night they just keep coming so sleep is impossible. The shots don't last long enough... So I'm really happy to have discovered (due to a kind friend) the sprays and their efficacy at letting me sleep.

I'd love to have stop the hits altogether, but I don't like the verapamil and I'm not all that hip on all the other shit either for the fact that I know my cycle will end sooner than later at this point. I'm just really glad to be able to manage this end part of it because it's fucking brutal for the last couple months!

My pred taper is over 3/30... If they come back I'm going to have to tough out a few days off of opiates and imitrex and do shrooms again. If that doesn't do it I'm gonna do seeds. But I'm hoping I'm not going to have to go that far.

The last pred taper I did ended 3 days after my last hit, the last cycle... It's hard to tell if it was the natural progression and cessation of the cycle or if the pred ended it early. But so far the effects of this taper are very similar to my last one when I was on verap minus the 5 days of not pooping and not having the top half of my body break out in zit blisters. :o

And for the record, the doc did want to do the verap, I've got the script, but it was at my urging due to my last experience that we decided to try the pred alone.

Wish me luck!
Thanks!

Title: Re: Priceless!
Post by Gator on Mar 21^st, 2007, 1:43am

Chris, I don't remember, have you tried the Zomig Nasal Spray? Some people say they get upwards of 12 hours pf time after using one. It worked great for me to abort a hit, but I didn't get the long period between the hits. For me, I could do one and get hit 2 hours later. If you haven't tried it, you really should. More bang for the buck - if it works for you.

Title: Re: Priceless!
Post by Superpain on Mar 21^st, 2007, 1:45am

No, but i remember alot of you saying you used it. I actually meant to mention it at my visit but I forgot...
I could probably get them to call it in for me.
Do you know how much it costs without insurance?

Title: Re: Priceless!
Post by Gator on Mar 21^st, 2007, 2:14am

I think they were like $30 - $35 per spray back in early 2004.

I would still be using them if it weren't for changing insurance companies and the new one preferring imitrex. In order to get Zomig, I had to try two of their "preferred" triptans and they not work. Trex jabs worked quicker than zomig nasal, and I wasn't getting the phenomenal pf time other people were talking about with the zomig anyways so I stuck with the trex. (uh, pun not intended)

Hey, it's worth trying.

Title: Re: Priceless!
Post by Judge_Smails on Mar 21^st, 2007, 9:00am

Just my $.02 here, I've never heard of acne being a side effect of Verapamil. Usually it's associated with the Prednisone (being a steroid and all).

Last cycle was the first time I tried Pred (with Topamax), and I did get acne on my neck and chest. So when my cycle came around again 2 weeks ago I was expecting it again. I'm trying Verapamil for the first time (the Topamax did nothing for me) and so far it's working great. To top it off I haven't gotten any acne from the Pred either.

Obviously you know your situation, but you may want to give the Verapamil a second chance. As I said, I know many people have gotten acne from Pred, but haven't heard that from Verapamil.

Good luck!

Title: Re: Priceless!
Post by Superpain on Mar 21^st, 2007, 1:13pm

That's a good point. I asked the doc if it was from the pred or the verap and she said she had heard of that symptom from both.
So my decision basically lied in the fact that I know the pred knocked the ha's down quickly and that's what I needed. I may reconsider... I've got 2 more 60mg days left on the pred, then a week of 40 - 20mg... If the ha's start ramping back up, I'll probably start the pred.

Title: Re: Priceless!
Post by JeffB on Mar 26^th, 2007, 11:07am

Verap far outways a zit.
Sometimes it is NOT better to look good than to feel good. Get on verap!

Title: Re: Priceless!
Post by Superpain on Mar 26^th, 2007, 1:05pm

I probably will. But if it happens again I'll have to quit. Zits isn't really accurate... I looked like I had chicken pox. And I'm a waiter, so that's not good!

Title: Re: Priceless!
Post by JeffB on Mar 26^th, 2007, 6:08pm

Hmm. Then I don't know what to say my man!

Doesn't sound right tho!

Title: Re: Priceless!
Post by ndshrubs on Mar 31^st, 2007, 9:28pm

on 03/21/07 at 02:14:02, Gator wrote:

I think they were like $30 - $35 per spray back in early 2004.

To confirm, Zomig Nasal at my CVS pharmacy is at $32 right now w/o insurance. Good luck!

Title: Re: Priceless!
Post by BarbaraD on Apr 1^st, 2007, 8:57am

I was in BAD shape and we started the pred with Topamax (75mg) and the CH stopped immediately and has NOT returned (except for one breakthru). I'm HUMAN again (and I'm chronic).

You really need to get a prevent with the pred. It's a lovely world out there without the pain.

You might also invest in a bottle of Melatonin - take 12mg at night before bed. It helps with the night hits for me. Takes a couple of weeks to get in your system, but has done wonders for my sleep.

Don't know about the zits... At my age when I get one, I wear it proudly -- reminds me of my "younger" days... :D

Hugs BD

Title: Re: Priceless!
Post by Superpain on Apr 1^st, 2007, 11:28pm

I took the starting dose of verapamil fri and it made me feel like i was gonna pass out all night at work. Or at least I assume it was the verap that made me feel like that...
My last dose of pred was yesterday. I've only had about 1-2 ha's per night for the last 3-4 days. But so far I've been hit twice tonight and it's only 8:30. I guess I'll try to start the verap again and stick with it.
My last cycle ended on 4/5/04, a few hours after getting married. I'd sure like to celebrate a double anniversary with another timely remission. I know it's close to the end... I just hope it's sooner than later.

Title: Re: Priceless!
Post by Gator on Apr 4^th, 2007, 3:14am

Well, that would be the first time I ever heard of getting married getting RID of headaches. LOL

You need to give whatever med you and your doctor decide on a fair chance to work. One dose and out won't tell you anything. Unless side effects are really bothersome or dangerous, stay on it for at LEAST two to three weeks before giving it up. Some meds take longer than that to work and then there's all that trying the next higher dose stuff to go along with it. Sometimes you have to develop coping skills to deal with side effects, like people on Topamax have been known to use sticky notes to help them remember things. It's all a trade off no matter what you take, but you have to give whatever it is a chance to work or not work.

Good luck. I hope you get your remission tomorrow. Today would be even better.

Title: Re: Priceless!
Post by Superpain on Apr 11^th, 2007, 9:39pm

Thanks Gator... I'm right on the cusp! I'm barely getting hit at all for the last 5 days or so... I'll be PF very soon.
Well... At least for a yr or two... Then I'll be right back in it. :-/ But I'm more than happy to take what I can get! I just wish I could spread it around!