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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Have I extended my cycle?
        
(Message started by: ShaneM on Jul 21st, 2006, 8:13pm)
Title: Have I extended my cycle?
Post by ShaneM on Jul 21st, 2006, 8:13pm
Alright.  Not only am I really tired of taking these freakin pills all the time, but I am starting to believe that I have done nothing more than extend my current cycle.

My cycles usually last for 6 weeks and come on in the early summer and then again in the late winter with a break in between.  I have never been very true to the preventatives that have been prescribed to me, and that is mostly b/c I end up feeling real strange.  Any of you that have taken high doses of things such as Topamax or Lithium, etc. can relate.  I did find that Prednisone typically broke the cycle in low doses given as a shot in the rear. No problem.

For whatever reason I decided that this cycle I would put faith in my Doc's advise and go true with the meds.  I have been in cycle for almost 11 weeks on Verapamil 480, Topamax 125, And a long Prednisone taper that I am still a week and a half from getting off of and still getting a low end smack in the head every 3 days.  I did  find Melatonin 12mg (thanks to you wonderful people out here in CH.com land) as such I am sleeping.  and not much to speak of as far as shadows go.

So, the PA at the docs office says that she thinks I am going chronic. I think she's full of it.  I think the meds may have just drug the whole damn thing out.  Now I am thinking of taper all the meds and going back to what worked best in the past...

Sorry to carry on so.  

Has anyone else had similar results due to prevent overload?

Thanks again to all,
PFDN
Shane
Title: Re: Have I extended my cycle?
Post by E-Double on Jul 22nd, 2006, 7:39am
good luck.
Title: Re: Have I extended my cycle?
Post by ShaneM on Jul 22nd, 2006, 10:55am
I should have done a little more research on the boards before posting but I found where this topic had been discussed between April and June "Suckle the teat of verapamil".  Many said that they felt that verap had played a hand in extending their cycle, in very much the same way that I have described here. So, I guess that part of the question is answered to an extent.

Even further to E-Double- On that post you had said that you had gone through a detox period. How has effected you? Are you PF now?
Title: Re: Have I extended my cycle?
Post by Guiseppi on Jul 22nd, 2006, 11:47am
I only tried verap once and that was long ago. I used too low of a dose and had no success. I've used lithium ever since, 1200 mg a day< with cafergot, 02 and imitrex for the break thru's. I may be going chronic now, coming up on 9 months without a break. I had been pretty much 2 times a year, 8 to 12 weeks before that, fo about 28 years.

So I can for sure say it's not the verapamil. This is the first cycle I've ever used injectable imitrex. I'm closing in on 50 so who knows what might be changing in my body to make me go chronic. It might be the lithium after all these years, it could be the imitrex, or it might be the beast morphing again.

I won't go the detox route but wishing you the strength to pull it off and some luck in kicking your cycle.

Guiseppi
Title: Re: Have I extended my cycle?
Post by Flash on Jul 22nd, 2006, 10:52pm
Of course they do, the intention is that you pay for these drugs for the rest of your life.  What would be the sense in making a drug that cured something.  That would be taking food out of the shareholders mouths... or at least the Porsches out of their garages.

All these drugs are designed to make you feel better for a couple of weeks, just to convince you that they do something, then make things gradually worse so that you take more.  It works this way right up until you land in that special zone where you are taking just shy of the lethal dose every day for the rest of your life and thus maximising profits.  The headaches will still be really bad, but would temp get much worse for the first few weeks you stop taking the drug... just to convince you not to stop.

Hope this answers your question.
Title: Re: Have I extended my cycle?
Post by E-Double on Jul 23rd, 2006, 12:44am

on 07/22/06 at 10:55:20, ShaneM wrote:
Even further to E-Double- On that post you had said that you had gone through a detox period. How has effected you? Are you PF now?



I'm completely med free since March.
I am still in cycle but I rarely shadow and within this chronic cycle I have mini cycles of high and low periods.
I had cycles within while on meds yet it was different.
I feel that attacks are cleaner........over and done without residual anything.
It's weird but for me good.
I was going to "bust"but things impeoved so dramatically for me that I decided to just remain status quo.
Life is good so no complaints
Title: Re: Have I extended my cycle?
Post by TxBasslady on Jul 23rd, 2006, 3:04am

on 07/23/06 at 00:44:38, E-Double wrote:
I feel that attacks are cleaner........over and done without residual anything.
It's weird but for me good.
I was going to "bust"but things impeoved so dramatically for me that I decided to just remain status quo.
Life is good so no complaints



Sometimes I think we get so much shit built up in our bodies, things just can't get better.

I've been off everything since December 29th.  I use 02 and nothing else.   I still get hit....but like Edub says, it's so different.   My hits are shorter...and not as intense.

Blake has been med free since before I was.   We're talking chronic for 20 years.   Years and years of stuff that quit working.   He uses 02 also.   He's been doing great since Jackie got him off all that shit.

I'm not saying that everyone should do this....I'm just saying that there's proof that it works for some.  It's certainly up to the individual to decide.  

Last triptan I took was January, 2005.   I plan to never take another.

I know it's a bit scarey to think of taking no meds.  It was for me...and I know it was for Blake.   Things were a bit hairy for me for the first 2 days....but settled quickly.   Best thing I ever did.

Good luck....

Jean
Title: Re: Have I extended my cycle?
Post by chewy on Jul 23rd, 2006, 9:08am

Quote:
I have been in cycle for almost 11 weeks



Quote:
the PA at the docs office says that she thinks I am going chronic.


Tell the PA she should do a little research before making irresponsible comments and also inform you Docof her comment. Its all about education.

Chronic is 12 months with less than 30 consecutive pain free days with or without meds.
Title: Re: Have I extended my cycle?
Post by ShaneM on Jul 23rd, 2006, 2:12pm

on 07/23/06 at 09:08:32, chewy wrote:
Chronic is 12 months with less than 30 consecutive pain free days with or without meds.


She is just a quiter!

Thanks so much for all the support, as usual.  Just as starting to take these meds was a big move, so is facing the doc and telling him that I want to go in a different direction.  I do believe that he wants to do the right thing by me.  I just don't know how to tell him that I am willing to try other methods (ie. shorooms, etc.) and expect him to support it by writing RX for O2.  I mean, he's most likely going to think I'm nuts.  I do remember back several years ago being free for about a year and it was after I had dosed with a friend for fun.  That was the last time I had done it.  And I did put it togther until I found you good folks.
Even if I don't tell him about the alternatives, I still am afraid he won't give me support without preventatives.  And to anser my own question I guess I would be looking for another doc that would, right?   ;)  And just so ya'all know, I do print out ever option that I find and bring it to his attention.  Last time I gave him info on Kudzu which he said he would take a look at.  We also talked about me using Melatonin which I have been using sucessfully for about a month now.

Shane
Title: Re: Have I extended my cycle?
Post by TimJohnson on Jul 26th, 2006, 10:30pm

on 07/22/06 at 22:52:39, Flash wrote:
Of course they do, the intention is that you pay for these drugs for the rest of your life.  What would be the sense in making a drug that cured something.  That would be taking food out of the shareholders mouths... or at least the Porsches out of their garages.

All these drugs are designed to make you feel better for a couple of weeks, just to convince you that they do something, then make things gradually worse so that you take more.  It works this way right up until you land in that special zone where you are taking just shy of the lethal dose every day for the rest of your life and thus maximising profits.  The headaches will still be really bad, but would temp get much worse for the first few weeks you stop taking the drug... just to convince you not to stop.

Hope this answers your question.



I love a great conspiracy theory.
Title: Re: Have I extended my cycle?
Post by TimJohnson on Jul 26th, 2006, 10:32pm

on 07/23/06 at 09:08:32, chewy wrote:
Tell the PA she should do a little research before making irresponsible comments and also inform you Docof her comment. Its all about education.

Chronic is 12 months with less than 30 consecutive pain free days with or without meds.



Go ahead and isolate the ones who are trying to help you.  There are better ways to point out how this made you feel Shane.
Title: Re: Have I extended my cycle?
Post by CHTom on Jul 27th, 2006, 12:21am
Your cycle lasts as long as it lasts and you can't extend it.  If you get an effective medication, you may be able to shorten it or ease the pain.  Concerning rebound CHs, there is no scientific evidence that there is such a phenomena, just anecdotal tales which do not constitute proof.  Good luck.
Title: Re: Have I extended my cycle?
Post by Bob P on Jul 27th, 2006, 9:20am

Quote:
Of course they do, the intention is that you pay for these drugs for the rest of your life.  What would be the sense in making a drug that cured something.  That would be taking food out of the shareholders mouths... or at least the Porsches out of their garages.

All these drugs are designed to make you feel better for a couple of weeks, just to convince you that they do something, then make things gradually worse so that you take more.  It works this way right up until you land in that special zone where you are taking just shy of the lethal dose every day for the rest of your life and thus maximising profits.  The headaches will still be really bad, but would temp get much worse for the first few weeks you stop taking the drug... just to convince you not to stop.

Hope this answers your question.


Wow!  Ya mean someone designed a drug to make CH worse and lenghten the cycle?

LOL
Title: Re: Have I extended my cycle?
Post by thomas on Jul 27th, 2006, 9:29am

on 07/22/06 at 22:52:39, Flash wrote:
Of course they do, the intention is that you pay for these drugs for the rest of your life.  What would be the sense in making a drug that cured something.  That would be taking food out of the shareholders mouths... or at least the Porsches out of their garages.

All these drugs are designed to make you feel better for a couple of weeks, just to convince you that they do something, then make things gradually worse so that you take more.  It works this way right up until you land in that special zone where you are taking just shy of the lethal dose every day for the rest of your life and thus maximising profits.  The headaches will still be really bad, but would temp get much worse for the first few weeks you stop taking the drug... just to convince you not to stop.

Hope this answers your question.



I think there may be some truth in some of this.
Title: Re: Have I extended my cycle?
Post by Melissa on Jul 27th, 2006, 10:20am

on 07/23/06 at 14:12:19, ShaneM wrote:
I just don't know how to tell him that I am willing to try other methods (ie. shorooms, etc.) and expect him to support it by writing RX for O2.  I mean, he's most likely going to think I'm nuts.  I do remember back several years ago being free for about a year and it was after I had dosed with a friend for fun.

Even if I don't tell him about the alternatives, I still am afraid he won't give me support without preventatives.

Well, you could look into getting a new doc, OR you could just explain to him that you'd like to go med free.

I have never liked taking drugs...ANY drugs, and my doc understands this, (even though I call him "Dr. Feelgood" because he's always ready to write a script, LOL) so he is behind me on whether I want to try them or not.  Last cycle I kept it natural, and my doc RX'd me O2 and I took Kudzu as a prevent.  He always is asking me what works, as this is new to him too, so there are times I will print info. out for him to educate.  Thing is, he is always writing in my file what I tell him that's worked, or not worked, for me.  

Ya know, after writing all that, it sounds to me like if your doc won't RX you JUST the O2 for your HA's and is not willing to actually READ the info. you give him, it's time to say goodbye! :-/

Your doc works for you.  Just try to remember that.

Good luck and let us know what you decide!
:)mel
Title: Re: Have I extended my cycle?
Post by Kevin_M on Jul 27th, 2006, 10:44am
For ten years I was episodic, 3 months twice a year without a preventative and only Imitrex n/s, which found difficulty catching a quickly ramping hit and waking at night could take a 40 minute abort time at extreme Kip.  Averaging six hits a day during cycles I got to Verapamil, learning from this site.  
 Started the verap early 2004, got off it after the first cycle for three months, used it the second cycle later that year and haven't gotten off it since.  There are fluctuations, I can get as low as 240mg but then during a year, as high as 600 for periods.  
 Yes, there's been an extension it seems however I'm very complacent about it because of the years of extreme pain it has prevented.  I never want to go back to how it was before again.  For now it has been a plateau of unbelievable relief and I'm not rocking the boat, I know how cold and deep the water is.  
 I tried alternatively changing things after tapering off the verap and had some success for a while but it didn't work out and landed upside down in the mud a month later, in the aftermath, 22 "E" tanks in three weeks as well as daily Imitrex usage too.   I still have a lot of faith in the proven alternative though and will try it again in time to come.
 Things are back under control and I'm going to leave it right there for awhile.  I have no problems with verap twice a day, but that seems suited for me right now.  
 Everyone is different, I'm complacent about taking it everyday but more importantly, pain free.
 
Title: Re: Have I extended my cycle?
Post by ShaneM on Jul 27th, 2006, 12:14pm
Well, I have spoken with the Doc just a few days ago and he was with me on coming down off the meds for awhile  and kind of starting on a fresh slate. I told him that after dealing with this for nearly 2 decasdes that it was my cross to carry and that I needed to be as much a part of the therapy as any doctor (in so many words).  I also told him that I was very ready to try alternative methods that might even produce similar results to those RX that he would give me.  And I would even consider a little fungus therapy.  Believe it or not, he didn't completly poopoo the idea ( no pun intended).  So, I have a much better outlook on the situation from the aspect of the doctor.  He seems to want to help as much as he possibly can.

I started decreasing my Topamax right away.  I will taper off of it first over the course of the next couple of weeks.  I am already noticing a difference in side effects.  I had a feeling it just wasn't for me.  Then the others will come after.  All of this I will continue to do under the Docs supervision.  Honestly, I don't have a problem with that.  It makes me feel like he is taking an interest in the best therapy for me.  Not all of the clusterheads he may have, but me.

I know the pain may be more intense when I come off of all of this, but its worth a try.  Its not going to kill me.  And I have ways to abort.  O2, RB, Coffee, Water, etc.  If it gets too bad,  POP! goes the trex!  At the very least I may truely find out if I am turning the corner.  No worries...  And I always have you guys...

Thanks,

Shane


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