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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › in the "to the newbies" thread

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in the "to the newbies" thread (Read 2125 times)

Mrs Deej

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in the "to the newbies" thread
Apr 2^nd, 2009 at 9:28pm

Val,

Thought more people would see your post down here...

Val_ wrote on Apr 2^nd, 2009 at 6:28pm:

Hi! I am a new CH member/sufferer (6mos) & have been a migraneur for the last 5 years. I have been on preventative Topamax 75mg/day for the last two years, Norvasc 5mg/day also for the last year (calcium channel blocker - supposed to be prophylactic for migraine not sure about CH) and have taken a bunch of the triptans to try to abort - Relpax, Imitrex, Maxalt MLT (worked best as it dissolved on tongue & worked fast when I was sick vomiting and couldn't take pills.) In Oct I started getting the clusters in 3-week periods with migraines in between - thought I was going to die! My GP prescribed Fioricet as a rescue drug and told me not to stop the Topamax when I tried telling her it Obviously wasn't working! Shocked

So I decided to find another neurologist hoping he'd try another preventative. He asked me if I was having clusters still, and when I told him not at the moment he seemed to wave them off. They started a few days after I saw him. Angry

here I am amidst my third cluster episode cycle and all he had to tell me was that Topamax was the best that there is for me - take 2 Aleve in the am, take all Topamax at night instead of splitting it up am & pm, and try Treximet (just 85 mgs of Imitrex with 500mg Naproxen - did Nothing for migraines or clusters!!) and Imitrex Injections to abort. Wow - that 6-mg shot kicked my butt - but in about 30 mins, my eyeball wasn't going to fly out of the socket any more, and the sharp stabbing pain in it subsided.
SO - I am going back to see this new neuro in a couple of weeks and was wanting to know if there are any people out there who have used good preventatives for migraines And CHs? Thanks for any ideas.
Val

...any suggestions folks...also...LOVE that font, but kinda hard to read...

"I don't know the key to success, but the key to failure is trying to please everybody" - Bill Cosby

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Re: in the "to the newbies" thread
Reply #1 - Apr 2^nd, 2009 at 11:20pm

Sounds to me like you've got a lot of medication but perhaps you can explore the use of Oxygen. The menu bar to the left has a nice yellow link to Oxygen info. Most people here use it to abort a headache.

I'm a supporter and not a sufferer so I don't have all the specifics of how and flow rate etc but poke around there and I'm sure others will come along behind me.

Treat people with kind words.

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Val_

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Re: in the "to the newbies" thread
Reply #2 - Apr 3^rd, 2009 at 6:11am

Thanks for the suggestion of oxygen to abort. I was trying to figure out how to post a new thread, as the screen stated it was something I was allowed to do, but I was getting error messages.
At this point in time, I am more looking for preventatives that seem to work for migraines And clusters as a first stop - though I am definitely going to suggest oxygen to my neuro when I go back!

From what I've read it seems Verapamil might be a better calcium channel blocker than Amlodipine (Norvasc) perhaps? Is one as good as another? Has anyone used the latter?
Any better preventative options out there? thanks
Val

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Guiseppi

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Re: in the "to the newbies" thread
Reply #3 - Apr 3^rd, 2009 at 10:59pm

Verapamil has proven a very effective prevent for many on the board, but at doses much higher then docs are used to prescribing for their BP patients. We have people at 960 mg day to get relief. It requires close monitoring as it can cause dangerously low blood pressure. It's one you DON'T mes with the dosing without a doctors approval and monitoring. Hoping it proves the silver bullet for you.

Joe

Edited cuz I was dumb and called verapamil an abortive and not a preventative!! (thanks Brew!)

« Last Edit: Apr 6^th, 2009 at 10:16am by Guiseppi »

"Somebody had to say it" is usually a piss poor excuse to be mean.

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: in the "to the newbies" thread Reply #4 - Apr 4^th, 2009 at 11:07am Lithium is another possible preventative. Again, dosages have to be monitored through blood tests and adjusted accordingly. My husband goes on an tapers off - hoping to have broken the cycle. Sometimes yes, sometimes too soon and has to start over. Just more info to discuss with your neuro.
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Marc

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Re: in the "to the newbies" thread
Reply #5 - Apr 4^th, 2009 at 1:17pm

But I wouldn't suggest turning your doc off by immediately suggesting 960mg of Verapamil. Unless he or she is aware of the particular studies, your info will appear to have come from some quack.

Joe is of course correct that some folks have to go that high, but those high levels are reached only under careful supervision and periodic cardiac reevaluation. In watching this board for many years, I see a lot success in the 480mg-720mg range.

Also of some importance: experience with Clusterheads has shown the shorter release version of Verapamil (taken more often) to be generally more effective than the longer or sustained release version.

Marc

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Val_

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Re: in the "to the newbies" thread
Reply #6 - Apr 4^th, 2009 at 10:36pm

ha I can see it now... excuuuse me doc, but I know you said 2 weeks ago I'm taking the best you've got - I want you to prescribe me 1G Verapamil Now. Tongue

No, I got the point that was being made that it can take UP to a lot higher dosage than usual. I've tried enough preventatives to know that you start out really low, add slowly and see what works for you. A looong process. Not looking forward to it again, but I'm getting pummeled here on cycle with migraines too - and nothing's helping to prevent, even to abort for long. Sad

Thanks for all of the suggestions! I will post a bit more of an intro in another thread - I'm new to this messaging board life - but thought at this point, I'll take ANY HELP I CAN GET!!!! Cheesy

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Re: in the "to the newbies" thread
Reply #7 - Apr 6^th, 2009 at 1:47am

Val_ wrote on Apr 2^nd, 2009 at 6:28pm:

Hi! take 2 Aleve in the am, take all Topamax at night instead of splitting it up am & pm, and try Treximet (just 85 mgs of Imitrex with 500mg Naproxen - did Nothing for migraines or clusters!!) and Imitrex Injections to abort.
Val

So, let me get this straight. Excuse me if I'm confused. (it happens this late at night LOL)

You're taking Aleve and Treximet and Imitrex shots? Treximet as a preventive?
If so, please be careful taking all that Imitrex. Especially if you notice your cycles starting to last longer than usual.
You know, I'm assuming, that you're also doubling up on Napoxen? That's what Aleve is.
Taking an Aleve with your Imitrex shot is the equal to using Treximet. Only cheaper Wink

Lithium is usually prescribed for chronic clusters as it takes time to build up to a therapeutic dose and then to detox off of it. It works best for chronics. They can just stay on it, year round.

Also, not sure of your topamax dose but it should be titrated upwards slowly and detoxed off of, slowly. Be careful as at some dose, you may need to put a beeper on your car keys to be able to find them when you forget where you left them Wink

If the Imitrex shots continue to "kick your ass" I would suggest trying the Imitrex tip on the side menu to cut down on the size of the dose. Many people can get away with only 2mg. There is a new 4mg shot as well as possibly being able to get it in a vial so you can control the dose size and make it last longer.
Sometimes less is more....plus you'll cut down on side effects.

good luck....you'll find a combo that'll help. Especially if one of them is this site.

Bobw

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Val_

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Re: in the "to the newbies" thread
Reply #8 - Apr 6^th, 2009 at 8:42am

Hi Bob. hope I can clarify a little. I have been taking Topamax 75mg with Norvasc as preventatives that are no longer working. I went into a new neuro that told me to take 2 Aleve in the am and to try this:
To abort, try Either:
-Imitrex Injection
OR - NOT together -
-Treximet - which is 85 mg Imitrex with 500 mg Naproxen (yes - Aleve prescription strength. hehe). ANd I haven't been doubling up on the Naproxen so much - my clusters are generally 2pm & later so the first dose of Aleve has had some time. Usu shadows before then, some migraines too. I know long term NSAIDS aren't the answer so much either - only agreed it for a month to humor this guy - and I'm not waiting a month till I go back like this!

Funny thing is, Treximet is actually same price as Imitrex pills for me, and my insurance will cover 30 in 30 days, not 18 like they will Imitrex oral tabs (they recently upped it from limit of 6 Imitrex/mo with generics available). Bahahahaha UGH stupid insurance - they charge MORE for generic Sumatriptan Succinate Injections than they do brand name Imitrex Statdose injections! Tongue

Will never try to understand.

SO - I tried the Treximet when all was said and done, and it didn't help clusters at all (took sooo long to kick in) and didn't even help migraines so much this week
and Imitrex shots had side effects galore - 'kicking my ass'. I experienced unpleasant feelings of it going straight to my head - literally felt that way, made me flushed, dizzy, but that wasn't too bad - my jaw got tight - clenched. I had to sit there and actively try to not clench it - to relax... thought it might make things worse. It happened again that night when I couldn't sleep at 2am - my jaw clenched w/o taking more drugs that is. Not good. I tried the 1/2 shot - it worked ok the first time, but left me with 1/2 shot and didn't do the trick the 2nd time around and then I was out, beast still there. And it still made my jaw so tight. My doc only prescribed me 2 injections to try. He's getting a call this am. Wink

We're gonna talk strategy now or he's fired! Tongue

O2? Different Preventative?

Hope this makes more sense! I do no better at 5am than many might in the middle of the night! I'm a night person and waking this early isn't - ahem - normal for me. HA
Val

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Re: in the "to the newbies" thread
Reply #9 - Apr 7^th, 2009 at 12:41am

Hi Val,
Thanks for the clarification.

I would certainly suggest doing whatever necessary to get the 02, first and foremost. Be sure the script is written correctly to get the right regulator and mask. Then I'd call and confirm all that with the supply company before they even load it into the truck. Some just don't get it the first time.

It's probably going to be a little tough getting everything right with the migraine complications, but stick with it. Sounds like you're on the right track, with the right attitude. Wink

For me, I'd probably try to treat the migraines with as few prescription meds as possible, if possible. Try everything like Co enzyme Q10, ginger, folic acid, Petasites hybridus rhizome extract (butterbur) etc etc etc.
It would help keep down the use of Imitrex and help zero in on what works best for the clusters.

if all else fails......rattle my cage Wink

good luck,
Bobw

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: in the "to the newbies" thread Reply #10 - Apr 9^th, 2009 at 8:29am Hi Val. I'm a supporter, not a clusterhead, so I can't speak about meds., etc.(actually, I could, after 18 years experience with the beast, but I won't). Just wanted to welcome you and hope that you have a good supporter around you to help with this beast. We're here when you need us. Good luck.
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Val_

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Re: in the "to the newbies" thread
Reply #11 - Apr 10^th, 2009 at 12:05am

thanks MW.
I do have a great supporter doing everything he can for me right now, and now I have shared what is going on in the craziness of what was my life with some of my other family and have a bunch of ppl around me trying to tell me what to do/ not to do. haha - you know when Everyone thinks they know what's best for you - those that know nothing about what is going on or don't bother trying to. ;p THaT is why I tried to avoid everyone for a while. Can't do it forever tho, so I 'fessed up' to what was going on with me. partially regret it. Embarrassed

Oh well... dealing ok I guess given the circumstances. Almost at 2 weeks and nothing helps yet...
Knowing it will end helps, as well as having people there who listen and don't just interject "you SHOULD..." so thanks!!! Grin

AND for those of you who have posted with advice about the original question of meds...
an update to this original post, I'm on 40mg Pred (side effects nasty make me feel worse than I already do), Verapamil, and am gonna TRY to get that O2 again Mon!! Thought the steroids would help - attacks are getting worse. Cry

this is worse in pain level, frequency, and duration. Humpfff I know - might take a week or more and I've only been on it for 4 days... I have high expectations when I wanna be out of pain!

Will stick with it till Mon when I see doc again, as I have read that side effects are not uncommon, and if it will hel p me kick the cycle, I'll stick it out.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: in the "to the newbies" thread Reply #12 - Apr 10^th, 2009 at 12:28am Hang in there...and I hear you....when you're getting hit fast and regular......"it'll end" seems like the only thing that'll get you thru. Prayers for a quick cycle and some relief soon. Joe
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Re: in the "to the newbies" thread
Reply #13 - Apr 10^th, 2009 at 1:07pm

You may not be on enough of the steroid. Whenever I use it to bridge the gap between onset and when the preventatives kick in, I start at 80mg/day, all taken at once first thing in the morning. I then taper down to nothing over the course of two weeks.

In the past, when I wanted to see if prednisone alone would break the cycle (in other words, no preventative at the same time), I found the headaches kicked back in around 30-40mg.

Might be worth a try. Talk to your doc.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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