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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Chronics: WHAT IS REALISTIC?
        
(Message started by: nani on Nov 28^th, 2004, 8:50pm)

Title: Chronics: WHAT IS REALISTIC?
Post by nani on Nov 28^th, 2004, 8:50pm

I've been chronic for 4 and a half years. Until September, all I ever used was Neurontin as a prevent and Imitrex as an abortive (only used it a few times). I can probably count the total number of PF days (in 4.5 years) on both hands. I started verapamil and lithium in Sept and have stayed on the Neurontin. I can only use O2 as an abort now-no more triptans. I had one bad "episode" in October and have since returned to my "normal" HAs. 6-12 k 3or 4's a day, lasting 30 minutes or so. k1 Shadows dozens more times a day.
So my question is:
Can I expect that I will stop getting hit so much with the right med combo, or do I get more PF days? Or am I getting the best relief I can expect by not having the k5-10s? Basically - can it get any better than this? :-/

Title: Re: Chronics: WHAT IS REALISTIC?
Post by BillyJ. on Nov 28^th, 2004, 9:20pm

Quote:

Basically - can it get any better than this?

Maybe. I would say probably.Is upping the dosage on the
verapamil and or lithium an option? Often when one of
these meds has some effect the effect can be increased
by increasing the dosage.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by sandie99 on Nov 29^th, 2004, 3:13am

Nani,

I'm in the same situation.

I am taking 400mg of verapamil until Christmas and then, if it doesn't work, I'll start another preventative med.

I am being Miss Optimistic about the future, though.
I keep my thumbs up that there will be a PF year in my future... :)

sandie99

Title: Re: Chronics: WHAT IS REALISTIC?
Post by becky8 on Nov 29^th, 2004, 9:17am

Same boat!!

Title: Re: Chronics: WHAT IS REALISTIC?
Post by unsolved1 on Nov 29^th, 2004, 1:24pm

Realistically speaking: If you've been on the same prevents for 4 yrs and are still getting hit ... it doesn't sound like it is working. Although, since your headaches are in the K3-K4 range, it could be much worse. Maybe the meds are helping somewhat. The only way to be for sure is by 'trial and error'. (trying different doses or different meds). Remember to talk to your doc before changing doses or meds.

Goodluck and I hope it ends soon for you,

PF Wishes,
UNsolved

Title: Re: Chronics: WHAT IS REALISTIC?
Post by nani on Nov 29^th, 2004, 1:32pm

Thanks everyone...
Michael, I've only been on verap and lith since Sept...only the Neurontin for 4 years... I am considering talking to the doc about upping the dosages. The last neuro visit was just after my episode was over and was the one PF day I'd had since last year. Figures. Told him I was doin' GREEEAAAT. He said - good, check back in 6 months. :-/

Title: Re: Chronics: WHAT IS REALISTIC?
Post by PerryGR on Nov 29^th, 2004, 2:23pm

Nani,

Have you checked the lithium levels in your blood serum ever since you started taking lithium? Concentrations between 0.6 and 1.2 are considered therapeutic. If i'm not mistaken you're on 150mg of lithium per day- it is possible that you haven't achieved therapeutic concentration on that dosage (of course it takes different dosages for different people).

Just my [smiley=twocents.gif]

PFDAN to all,
Perry.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by chrismo on Nov 30^th, 2004, 2:58am

I can't help but suggest this.....

http://www.clusterbusters.com

also you may want to read this thread if you have not already...

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1085591042

Title: Re: Chronics: WHAT IS REALISTIC?
Post by nani on Nov 30^th, 2004, 9:22am

Thanks chrismo. I'm still on the fence about the alternative treatment.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by Filbert on Nov 30^th, 2004, 9:20pm

Nani have you ever tried indomethacin-just curious.

Filbert.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by nani on Nov 30^th, 2004, 10:04pm

No fil, I haven't. I was going to mention it to my neuro because of the "ice pick" pains I get sometimes. I guess I forgot. :-/
Has it worked for you?

Title: Re: Chronics: WHAT IS REALISTIC?
Post by Filbert on Nov 30^th, 2004, 10:18pm

No I've never tried it but just going back to your first post on this topic I just thought in terms of the number of attacks you have in a 24 hour period it might be worth ruling out CPH.

All the best Filbert.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by nani on Nov 30^th, 2004, 10:22pm

I guess I never thought of the number of hits as excessive, I always figured everybody got hit like that. [smiley=huh.gif]

Title: Re: Chronics: WHAT IS REALISTIC?
Post by unsolved1 on Dec 1^st, 2004, 2:37am

Some good advice. I think every 'clusterhead' should give Indomethacin a try.

Ask your doc to let you try it for at least 1 week...It may help.

Unsolved

Title: Re: Chronics: WHAT IS REALISTIC?
Post by Superpain on Dec 1^st, 2004, 4:19am

Try the alternative nani...

Title: Re: Chronics: WHAT IS REALISTIC?
Post by becky8 on Dec 3^rd, 2004, 11:30am

I don't believe getting alot hits mean CPH. I am not saying it doesn't and you'd be more lucky if it did seeing how Indomtheacin works great for it. But they thought maybe thats what I had cause I was being hit a super lot. And it didn't work, so I am now on 360 verapamil and just went to 600 lithium from 300. Doing great so far but I have LEARNED not to trust that its gonna be it for me. I just take each day as it comes!!!! Best of Luck to you!!!

Title: Re: Chronics: WHAT IS REALISTIC?
Post by chris on Dec 15^th, 2004, 3:58am

I am on the same meds as you and you def. need to up the dose of lith. If this works then maybe you can cut out one of the others. like the neurontin. Remember it's better to be on 2 meds than 3. Chris

Title: Re: Chronics: WHAT IS REALISTIC?
Post by swiftlaw on Dec 24^th, 2004, 12:11am

16 years of CH. Chronic the last 5. Tried everything. Heroic doseds of Verapamil - no milk- only milk -no chocolate - only chocolate, Magnets, Wizards and Shamans. 2 nights ago I tried the mushrooms. 1 ch today kip 2 only 15 minutes. Praying that this holds. Imagine an herbal remedy? It was scary at first but then leveld off and was kind of silly. Hoping for a pf christmas.

Title: Re: Chronics: WHAT IS REALISTIC?
Post by sailpappy on Dec 27^th, 2004, 5:24pm

;;D35 years as a Chronic with an average of 7 hits on a good day, Verapamil should be the first drug to be increased, if its helping, Lithium wipped out my short term memory after only a short time so I had to stop it but stayed on 480mg of verapamil for 2 years, even though it stopped working in about the 6th month, there is another channel blocker called Cardizem(Diltazem) which works in a similar manner.
In year 30 I went on OxyContin and had good results for about 3 years, very little total painfree days but it decreased my kip9's to kip 4-5's abut went back to drug free except for 180mg of verapamil for my Blood presure, not helping the clusters, but my BP is back down to 130/65 Oxycontin is very addictive and should be a last resort attempt, O2 does not help my attacks at all! Back to running cold water over the affected side of my head, seems to allow me to tolerate the pain better! Pappy

Title: Re: Chronics: WHAT IS REALISTIC?
Post by rextangle on Jan 20^th, 2005, 1:50pm

Nani,

I was in the same boat as you... I tried the prednisone with verapamil taper, and that got me nowhere...
Chrismo made the best suggestion....

As a chronic, I was giving up on all meds... and I did!
Complete detox and then mushrooms....
I tell you, this is the best thing I've ever done for CH!

Pain free most days, the occasional shadow that disappears withing minutes by using 02, but I get full nights sleep for the first time in ages, fell great during the day!

It's a miracle medicine. I've regained my sense of humor, started composing music again, my guitars are no longer dusty, and I appreciate every second of my PF life.

Good luck to you! :)

Title: Re: Chronics: WHAT IS REALISTIC?
Post by miapet on Jan 20^th, 2005, 2:16pm

*YAY* rextangle!!! *happy dance* for you!!
*positive light and energy*
miapet

Title: Re: Chronics: WHAT IS REALISTIC?
Post by rextangle on Jan 20^th, 2005, 2:43pm

Thanks Miapet!!! ;)

Title: Re: Chronics: WHAT IS REALISTIC?
Post by nani on Jan 20^th, 2005, 3:33pm

Thanks rex...I haven't ruled it out, that's for sure!

Title: Re: Chronics: WHAT IS REALISTIC?
Post by ClusterChuck on Jan 25^th, 2005, 3:52am

Nani, during my "regular" chronic time, I get one or two hits a day. But, since July of 2003, I have stopped responding to any meds, and have been getting 8 to 15 hits a day. I felt GREAT, as a month and a half ago, I got on a new cocktail and I dropped to 6 to 8 hits. I felt fantastic! (Strange how we adapt!)

But, I am convinced we are going to find the right concoction, and I will get back to my "normal" one or two a day.

Anyhow, for ME, one or two a day is what is "normal" for my chronic period of 6 years. Although, I do have "cycles" within my chronicness, where my hits are more often. That used to last a month or more, and then I would drop back to my "normal" level.

Chuck

Title: Re: Chronics: WHAT IS REALISTIC?
Post by Tiannia on Jan 25^th, 2005, 10:18am

on 11/29/04 at 13:24:16, unsolved1 wrote:

I have to agree with Michael. If after 3-4 years they should have more of an effect But maybe the Neurontin is not working nad you shoudl focis on the Lith/ verapcocktail and see what dosage really healps you. The way you make it sound, ift has been since you have been on those that youhave had some releif.

Sorry have to head out. PF wishes my firned.
-Tia

Title: Re: Chronics: WHAT IS REALISTIC?
Post by alleyoop on Jan 26^th, 2005, 3:19pm

on 11/30/04 at 09:22:25, nani wrote:

Thanks chrismo. I'm still on the fence about the alternative treatment.

nani, you need to fall off that fence. It'll do wonders for your head!

....................alley