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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Medication removal...Please give feedback
        
(Message started by: Redd715 on Jun 24^th, 2004, 9:25am)

Title: Medication removal...Please give feedback
Post by Redd715 on Jun 24^th, 2004, 9:25am

My specialist and I are convinced that my cycle is over and she wants to try to slowly remove the topomax first, and then the verapamil. Reason for this is that my attacks are now coming at the rate they were before this full cycle started. She is not convinced that the topomax was every really effective, but thinks it's possible that the cycle was winding down on it's own by the time I got in to see her. My attacks come between every 4-8 days just as before, with intermitant shadows or or less severe, not trex worthy attacks, with the last kip 8 last week while at work. Took my shot and was back at my desk in 10 minutes. Glad my supervisor wasn't there at the time.

So my question is this...what can I expect if anything from the taper down from the topomax from any of you that have taken it?
I guess I'm sort of scared that the topomax may be whats keeping the beast away for the most part and if tapering off....things could go to hell once again...

Please advize?

Title: Re: Medication removal...Please give feedback
Post by Rock_Lobster on Jun 24^th, 2004, 11:09am

I am kinda the opposite Redd. I am only on Topa right now.

100mg at bedtime. I miss a day or two, I get the hammer... hard... so there is no doubt it is effective in my case. With the Topa the only CH-effect is moderate shadows 1-day out of 4 ... really quite lucky relative to most of our other friends here.

Waiting for the shroomies...

Taper off of one or the other... just keep the Trex handy! You get hit, taper back up. Easy peasy!

Best of luck!
Wrok

Title: Re: Medication removal...Please give feedback
Post by E-Double on Jun 24^th, 2004, 2:26pm

Hi,
Although a "newbie"
I have asked people if they take some true forms of data on their CH's. I know that we tend to keep journals and write notes on them but....

Do we display them on charts. Visual display can be a more effective tool for us and them to really see if there are trends and effects of the meds.

I am a Behavior analyst and a special education teacher and data collection and display have actually helped me in some ways. Can't find any patterns LOL

Seriously though I would be glad to help in any way with things like this for you and all especially if it can clear things up for the Dr's. and ofcourse YOU!!!

Be well,
Eric

Title: Re: Medication removal...Please give feedback
Post by broomhilda on Jun 24^th, 2004, 2:33pm

Redd, good luck with tapering down! If you have questions you know where to find me k? ;;D

For me with Topamax, I tapered very slowly, almost two months it took to taper off completely, I was cuting pills( yes even with how tiny they were) as best as I could in 1/4 size... I was scared to taper off thats why I did it for so long, as Topamax did nothing but give me side effects I had no problems going off nor can I remember any problems with the tapering off c/o TOPAMAX! ::)

Its all a blur, lots of luck and love to you!

Andrea

Title: Re: Medication removal...Please give feedback
Post by Rock_Lobster on Jun 24^th, 2004, 2:49pm

on 06/24/04 at 14:26:49, E-Double wrote:

Hi,
Although a "newbie"
I have asked people if they take some true forms of data on their CH's. I know that we tend to keep journals and write notes on them but....

When I am in an episode, I keep a text log (date/time/severity) of every drug/dose, CH and shadow I have throughout.

The days run together when one is having a rough week.

Wrok

Title: Re: Medication removal...Please give feedback
Post by Sean_C on Jun 24^th, 2004, 7:45pm

A clusterheads biggest fear LOL is to hear the doc say we're gonna start to take you off or taper your meds LOL I think they're gone....................................."OMG is he nuts" LOL

You have to just trust them Red, on the brighter side your FREE

I'm happy for you

Sean :D

Title: Re: Medication removal...Please give feedback
Post by UN_SOLVED on Jun 24^th, 2004, 7:49pm

I dropped the TOPO like a bad habit. Wasn't helping CHit anyways ... and the kidney stones were killin me !

Unsolved

Title: Re: Medication removal...Please give feedback
Post by Sean_C on Jun 24^th, 2004, 7:56pm

Dude you are to freakin funny, of the two worst things to happen to a guy one is to have a kip 10 CH, next would be to push a golf ball out his dick.

If I had a choice I would take the stone ;;D

I hope things get better for ya Unsolved. It doesn't sound easy being you ;;D

Peace brother

Sean

P.S. My wife said she would rather give birth than pass a stone again LOL

Title: Re: Medication removal...Please give feedback
Post by Redd715 on Jun 24^th, 2004, 9:24pm

on 06/24/04 at 19:45:08, Sean_C wrote:

on the brighter side your FREE

Sean :D

Free from what? cycle? maybe...free from CH? hardly.... :-/

as I said still get attacks that are trex worthy every 4-8 days....shadows daily and lesser attacks that are near daily. Guess what I'm hoping is that after the topo taper that the beast will go back to nights only for the most part, and only get a day time attack on blue moons....lol...

I'm anxious over what is next I suppose...and I know there is no ryhme or reason for this bastard! Just scared how this may affect my job. I can't be without income again...my slush fund was dried up with this recent cycle. I'm scared as hell!

Title: Re: Medication removal...Please give feedback
Post by Sean_C on Jun 24^th, 2004, 9:43pm

Hi Redd,

I was kinda hopin' I was reading it that your cycle had broke and you were set free............that would be a good thing.

Hang in there it sounds like your on the home stretch.

When my cycle ends I usually get those fearful shadows for a couple of weeks but no clusters. I do however carry the trex for monthes after, I guess we live in fear of being without and getting blasted. I clutch that trex everytime I leave the house in my pocket.....still LOL

I hope good things come soon, vibes are on there way ;)

Sean

Title: Re: Medication removal...Please give feedback
Post by Prense on Jun 24^th, 2004, 9:45pm

on 06/24/04 at 21:24:00, Redd715 wrote:

as I said still get attacks that are trex worthy every 4-8 days....shadows daily and lesser attacks that are near daily. Guess what I'm hoping is that after the topo taper that the beast will go back to nights only for the most part, and only get a day time attack on blue moons....lol...

Personally, I wouldn't taper off a damn thing until the attacks are gone! If the topamax is bothering you, then get off that one. If the meds are not affecting you negatively, then I would wait until you are PF for a couple of weeks before tapering. Shadows are not PF...

Good luck!

Chris

Title: Re: Medication removal...Please give feedback
Post by Prense on Jun 24^th, 2004, 9:47pm

on 06/24/04 at 09:25:23, Redd715 wrote:

Sorry for the double post...

If you are still getting hit, YOUR CYCLE IS NOT OVER! It may be winding down, but only time will tell.

Chris

Title: Re: Medication removal...Please give feedback
Post by Sean_C on Jun 24^th, 2004, 9:51pm

on 06/24/04 at 21:45:23, Prense wrote:

Chris is right, but if there up to 8 days apart maybe just keeping an abortive close by will help. Shadows for me are more or less annoying but tolerable not worthy of trex but will make it stop if you need a break from the ol' finger pushing the back of your eyeball. Either way I'm still hoping your gonna be free soon. Hopefully sooner than later :)

PFDAN to you

Sean

Title: Re: Medication removal...Please give feedback
Post by Superpain on Jun 25^th, 2004, 5:21am

Listen. If you are episodic and you still even have shadows, your cycle is not over.

When your cycle is over you will not have ANY CH till the next round. Maybe an anomoly, a random hit or shadow, but if you are still getting hit with anything it is not done. And I would suggest tapering off of no preventative that has so far helped.

You're just asking for an ass whooping if you do.

If you go for a month or 2 months with no shadows or hits at all, then taper off.

My $.02

Title: Re: Medication removal...Please give feedback
Post by Redd715 on Jun 25^th, 2004, 7:25am

on 06/25/04 at 05:21:53, Superpain wrote:

Listen. If you are episodic and you still even have shadows, your cycle is not over.

Umm... I need to explain this a little better. Before March 8th if this year...I was having these attacks at close to the rate I am back at now, for about 13 years from what is in my medical charts and was mis diagnosed as migraine. For a year and a half before March 8th of this year they were more frequent. It wasn't till March 8th that I began to get them multiple times a day...leaving me unable to go to work or do anything constructive. I was dealing with a GP for the first 6-7 weeks before I started seeing the specialist and I was put on topomax with the verapamil, and as we slowly upped the dosages of the topo, The frequency and timeing of the beast began to deminish and mutate to no predicting him again. For the last 6-8 weeks I've been back to where it was before March 8th. Making a little more sense? The specialist feels that I have developed episodes along with being chronic, and is more convinced that the episode was on it's way out than that the topomax ever did me any good in the first place "because" I'm back to my original pattern of attacks.

Title: Re: Medication removal...Please give feedback
Post by Rock_Lobster on Jun 25^th, 2004, 8:05am

Are you 'epichronic' Redd? Or 'chronisodic'? Both have a ring. The first sounds like a lung disease.

Mayhaps you need to go on the jonny treatment or such... way outside my experience. Verap & Lith.

Title: Re: Medication removal...Please give feedback
Post by mustang on Jun 25^th, 2004, 8:48am

Tomopax did nothing for me, 640 mg of verapamil aday has kept me pf for about 6 mo. I am chronic.

Title: Re: Medication removal...Please give feedback
Post by Prense on Jun 25^th, 2004, 2:30pm

If you are chronic, why would you wean off of preventatives. I could see getting off one and trying another. I understood your first post as you were coming off preventatives entirely, tapering one at a time of course.

I probably misunderstood you....

Chris

Title: Re: Medication removal...Please give feedback
Post by Superpain on Jun 25^th, 2004, 4:17pm

Redd, your cycle sounds just like mine... Mine are always like that, slow at first, maybe 5-8 headches per month for a few months then daily or every other day for a long time and they build in repedity and severity until the crecendo of the cycle when I'm getting hit up to 20 or more times per day for 6-8 weeks normally. My last cycle was over 2 yrs long... So technically I was chronic, but really it was just a long cycle.

Point being when they build up like that the end of the cycle is coming. It gets unbearable and then all of a sudden they are gone.

If you are still having any headaches IMO you are not done yet, and I personally would advise not stopping the meds if they are working.

Title: Re: Medication removal...Please give feedback
Post by Redd715 on Jun 25^th, 2004, 4:47pm

Chris,

Thanks for the feedback...but I have never been PF for two weeks in 13 years. My first fiance tracked me down and we spoke last weekend and he remembers my having these fierce HA attacks as long ago as 20 years ago when we were together...however I don't remember much back then anymore.

What Pam is doing is tapering me off the meds to try some other mix I believe to try to get me pain free...really PF instead of this 4-8 days between attacks. I hardly think we can call it a 13 year cycle...maybe the topo was helping during the main jist of this cycle..maybe not...Pam even says we'll probably never know for sure, but she feels safe at this point to stop the topo slowly and if it's working we'll know...if it never did we can get me off it and start something else...but 4-8 days between attacks is not good enough for her...nor is it for me! I need more PF time...and 13 years of this crap is enough for me. I'd prolly be able to handle it if I never got another go round like I just had...but I know it's only a matter of time before it does come around. I'll be damed if I'm not going to be well prepared for it.

Title: Re: Medication removal...Please give feedback
Post by Superpain on Jun 25^th, 2004, 5:15pm

13 yrs!?
Ooops.... :-[

Title: Re: Medication removal...Please give feedback
Post by Redd715 on Jun 25^th, 2004, 6:40pm

[quote author=Superpain link=board=chspecific;num=1088083523;start=0#20 date=06/25/04 at 17:15:31]13 yrs!?
Ooops.... :-[/quote]

LMMFOA.....see thats what ya get when you don't really READ the posts, and just skim them....

You know I luv ya Bro....

Title: Re: Medication removal...Please give feedback
Post by kissmyglass on Jun 25^th, 2004, 8:27pm

so it sounds like you are chronic and having a "cycle within a cycle".
Ask your doc if you can stop the Topomax & get on Lithium along with Verap. Works wonders for this chronic head...

Kev