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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> All Meds Removal Update
        
(Message started by: notseinfeld on Apr 15^th, 2004, 3:42pm)

Title: All Meds Removal Update
Post by notseinfeld on Apr 15^th, 2004, 3:42pm

Pushing 2 months since I've dumped every preventative and every abortive (except 02) I had with the result more promising than I ever would have guessed. Even now my condition is improving with each passing week. As a chronic life was particularly rough.

Currently I have not had more than a k3 with most around k1's aborted with o2 +/- 5 minutes. Frequency is about 1 real one every other day with intermittant shadowing. Actually had a shot of Maker's Mark the other night and didn't have a coronary explosion! First drink in years.

So, in summation, by removal of rotten medications I have been able to reduce the frequency, duration, and pain level. What more could a boy ask for?

Still planning on consumin' the shroomin' once they decide to rear their pretty faces.

I would be interested to hear if anyone else had tried giving the middle finger to their medications for comparison and if so, speak up.

nots

Title: Re: All Meds Removal Update
Post by BobG on Apr 15^th, 2004, 4:33pm

:D Happy as hell for ya! ;;D

Title: Re: All Meds Removal Update
Post by Pegase on Apr 15^th, 2004, 4:58pm

Good News...wish you the best;-)

Pegase

Title: Re: All Meds Removal Update
Post by thomas on Apr 15^th, 2004, 6:20pm

8) 8) 8) 8) ;;D ;;D ;;D ;;D ;;D

Title: Re: All Meds Removal Update
Post by FZfan on Apr 15^th, 2004, 6:37pm

hey nots,

I've tried just about every prevent out there with the exception of depacote over the years. I gave up on prevents a couple of years ago. For the next two years I would breath o2 with the wrong equipment and take the occasional narcotic when things got unbearable. When my last cycle started back in Feb. I found this wonderful web site and found out I was using o2 incorrectly. The simple act of correcting my o2 situation allowed me to put the narcotics away for good. I couldn't believe the difference! I was taking Lexapro at the start of the cycle but quit taking that after 2 weeks. The rest of the cycle was fought with o2 only, well, not only - the support I found here was also a big help.

To be sure, the o2 didn't kill every h/a, but it killed enough of them to make taking meds for the few it didn't help with not worth it. I don't know if it was a coincidence or not, hard to tell with these things, but for the duration of my cycle, I was getting half the hits I would normally get.

Cycle ended in March, but when the next one comes, it'll be o2 only for me, as long as it continues to work as effectively as it did this time.

I guess in my case, it really wasn't giving the finger to meds that were working. It was more a matter of not taking shit that wasn't working anymore. Still, the end result was similar to the experience you describe in that o2 only with no meds seemed to be an improvement. I know it was a revelation for me, and I never would have even considered that option if I hadn't typed "cluster headaches" into Google a couple of months ago.

I'll be interested to hear how your shroomin' goes. I haven't ruled out that option yet.

Hope things continue to improve for you.

Title: Re: All Meds Removal Update
Post by eyes_afire on Apr 15^th, 2004, 9:27pm

Notseinfeld,

Important question: After you ditched the meds, did things get worse for awhile (or maybe in your case, remain just as bad for awhile after)?

Keep the updates coming. I'm in the process of ditching my verapamil. Sure, the verapamil works very well (i.e. nearly 100% effective), but I think I've gone chronic again. I went on a 5-beer-binge 2 days before starting the taper (like some other chronics, I think I've lost my alcohol 'trigger'... or maybe the verapamil was really working THAT well). I guess I'm trying to see 'where I'm at'. I expect the taper off verapamil to fail miserably just like the last time in October. Gotta say, things are certainly getting worse... I'm now experiencing that oh-so-familiar eyeburn. I reckon after a few 4:30am beatings my heels will be sufficiently scorched and running to the light. Better get out my knee pads because in a few days I'll probably be selling my soul to every possible deity and/or demigod. ::)

I started episodic, then went chronic, then episodic again, now chronic again I think, and totally confused.

--- Steve

Title: Re: All Meds Removal Update
Post by Superpain on Apr 15^th, 2004, 9:28pm

Never been medicated in 18 yrs till the last 2 weeks. But stopped yesterday after breaking out in a rash. We'll see how it goes :-/

Title: Re: All Meds Removal Update
Post by purpleydog on Apr 15^th, 2004, 10:09pm

I have tried over 50 different meds for my clusters. I also get severe,frequent and long-lasting migraines, so in the process of finding migraine meds to work, I could experiment a little (with my doctor's appoval). Of course, nothing worked.
Mine cycle "on" about every 16 months, and last for 6-8 weeks, 8-9 a day. One emergency room doc said one school of thought was it's an inflammation problem. Nothing was working. I decided to try ibuprofen and my pain med, vicoprofen. It worked! Now, as soon as I see shadows, I take 1 vico and 3 ibuprofen (200mg ea.) and it works. The vicoprofen has 200 mg of Ibuprofen and 7.5 of hydrcodone for a total of 800 mg/ibuprofen. Towards the end of my cycle, the headaches are pretty much 24hrs a day. That's when I hit the emergency room.

I am glad I'm not taking all those meds anymore. I am thinking clearer, my memory is intact, and my liver doesn't need to be replaced.

I try to keep a good attitude, try not to expect the headaches (very hard when they come at the same time each day), and take my meds as soon as I see shadows, they always progress into a full blown crisis.
Hope this helps.

Title: Re: All Meds Removal Update
Post by HypnoticFreddy on Apr 15^th, 2004, 11:10pm

In addition to the neorological CHs, I have the pleasures of manic depression. Mainly unipolar depression.

I get into arguments (well no longer, it is just not worth talking about the evil pharamaceutical companies, toxicity)with my best friend from gowing up about taking meds. Pyschotropics.

the ones we all take for clusters and for that matter depression, anxiety, manic depression, and other mental afflictions.

Look....Water is a poison. Maybe some remember a few years ago a family made their 12 yr old daughter drink a ton of water and she died. Sad story. Point is, everything is toxic.

But medicine is VERY toxic. And we can co into LD_sub50. Some people are just anti-meds. My friend Matt is. Thing is, I sometimes agree with him. Certainly the pharmaceutical industry is a bit ludicrous. Agreed.

But, in many cases, a lot of these drugs are so new, we do not know long-term effects. I mean, heck, what if taking Verapamil or Topamax causes you to grow a third nipple? I don't know. I know that Topamax was FDA-approved in 1996. That's failry recent, if you compare it to let's say...Aspirin.

Drugs are toxins. I try to explain to my friend that when I had severe depression and I awoke at 2:00 AM, couldn't fall back asleep even with elephant tranquilizers everynight for 3 months!!!, and I couldnt eat or poop, I dropped 30 lbs, and I always wanted be in a fetal position alone, etc....I was put on an SSRI. It took a month. Great. I ate again, I slept through the night, and I made a #2 (mind you I couldn't even make poo after downing a gallon of prune juice which seems to defy some sort of law of biology).

My friend Matt did not believe me. He did not believe I awoke and could not sleep. He did not believe I was stuck in a pattern that couldn't be broken by a guy sitting in a chair asking how I felt today.

I needed some brain adjustments, which was to be found in medication. It saved me. Later, I hooked up with a Zen shrink who to this day I do phone consults with and still hasn't even billed me yet (2.5 yrs!!).

Clusterheadache is even more like the above.

If you can beat the beast w/o any drug other than oxygen, than that is great. It also seems doable, if you have enough oxygen, and if you have portable oxygen.

I understand a lot of peoples decisions to be clean of toxins.

And by this I mean pyschotropic medicine. I always remember that first day in the university therapy center talking to a counselor, and he mentioned I might want to take medication, and I thought, No F'N way. Well, 8 years later, and 62 drugs later, I am alive, a bit more hyper than I was, but am OK.

Oh yeah, that was one year before 1997. The year of the cluster!

-Scott

Title: Re: All Meds Removal Update
Post by notseinfeld on Apr 19^th, 2004, 11:42am

Good responses --thanks all.

Eyes-afire--Indeed things seemed worse after the initial removal of meds but it was b/c of my impetuousness in dropping them all immediately, including the verap. Thusly I had the spike in b.p. and a general feeling of tumult throughout my entire system, not just the h/a problem. Things settled down in a few days and have improved steadily ever since.

Let me say again that I don't really *recommend* folks dropping medications but just posted my results for illustration purposes demonstrating that it is another 'strategy' for handling any condition, including CH. I do believe that the body is inclined to be in alignment; balanced, and strives to that. Sometimes the medications help, sometimes hinder.

Title: Re: All Meds Removal Update
Post by joesf on Apr 19^th, 2004, 12:51pm

I am a no med person. I just tried the O2 and got enough help out of it to know how it works. I still had to endure some bad ones. Next time I'll get a bottle with a higher flow rate and see how that goes.

Title: Re: All Meds Removal Update
Post by eyes_afire on Apr 19^th, 2004, 6:30pm

Thanks Notseinfeld. Big help. Past 2 days I've gotten thumped, so today I was really expecting the hammer to fall big time, but... so far, nothing (well, still some shadows but they've been unrelenting since 2001). I'm now on 120mg and was really considering going back up. I really don't understand anything anymore. My taper is still likely to fail causing me to run back to verapamil, but for now I'll continue to try to reduce verapamil (CH really sucks, so on a moments notice I reserve the right to reverse my taper, :-/)

--- Steve

Title: Re: All Meds Removal Update
Post by wingnut04 on Apr 22^nd, 2004, 2:33am

How do you "prepare" the schrooms and where can a guy get some. Just in case. I've heard they will stop an attack in it's tracks and put you back into remission.
I think I might want to try that...............

Title: Re: All Meds Removal Update
Post by joesf on Apr 22^nd, 2004, 9:57am

Hey.... how can you beat that? I stopped taking pills a long time a ago. I never tried the stuff you guys use. Next time i get a cycle i am getting a high flow O2 bottle. The one I am using maxes out at 3 litrs a minut and is only 22 cuft.
Really good news. Glad you are doing better.
Joe

Title: Re: All Meds Removal Update
Post by Samantha_Smith on Apr 22^nd, 2004, 10:33am

Not Seinfeld--

Yahooooooo!!!! I'm so happy for you! How awesome! I hope that you have many, many more PFDAN's to come. You deserve it!

I'm sorry that we lost track of each other. Totally off the subject (and not to make you jealous or anything--he he he he) but my husband and I are seriously thinking about moving to NH sometime next year. Long live the LP!!!! PM me sometime so we can catch up.

Yeah! Happy for you! Happy dance! Happy dance!
Samantha

Title: Re: All Meds Removal Update
Post by Roxy on Apr 22^nd, 2004, 12:15pm

nots,

I've been med free since my heart scare in January. The only med I was using was imitrex though. I had already given up on all the preventatives. I had never found one that helped. I have kept dosing, and I think that it keeps me in a lower cycle....only three to four hits a day.

I started the standard release verapamil yesterday. I had only tried the ER kind. I'm hoping it will help a little bit.

02 has been my lifesaver during all this.

Tracey

Title: Re: All Meds Removal Update
Post by eyes_afire on Apr 25^th, 2004, 3:46am

UNCLE!

Fuck this shit.

Last verapamil was 68 hours ago.
I can't do this.
I must be stoopid.
Worst skullcrusher in a long time.
I was in denial but...
No doubt about it anymore.... I really am chronic.

Many props to you Notseinfeld.
I'm glad you're free now.
You give us hope.
Rock on brother.

--- Steve

Title: Re: All Meds Removal Update
Post by notseinfeld on Apr 25^th, 2004, 7:00pm

Just so everyone knows:

When I find that genie in the bottle on the beach I'll request a selfless wish first and foremost: Free my brothers and sisters from this nightmare called CH. Like Billy Joel says: "only the good die young. " I see a similar pattern in that "only the good suffer CH." It's at this point that I believe we're supposed to ask the lord for a stronger back and not a lighter load :)

I'm thinking of attending the convention this year for the first time and hope to meet some of you there. Gotta brush up on my hillbilly accent a bit and find some overalls I look good in!

smooches,

nots

Title: Re: All Meds Removal Update
Post by Ann on Apr 27^th, 2004, 7:40am

Nots! That is excellent news!

I've had to get off my sansert lately...that whole 6 month thingy. I've been med free for over a week. I'm getting hit like there is no tomorrow. I haven't had a full night's sleep since I quit the sansert!!! Tell me things will get better please.

I get hit at say 2:00 AM...inhale some O2 for 15 minutes. It goes away only to come back at 3:00 AM. and it starts all over again. I don't know what to do anymore. I'm not functioning at work. When it gets too bad a good jab of imitrex will do the trick...but shit...I want to stop taking that stuff. Does this sound like what you went through when you went med free?

thanks
hugs
Ann

Title: Re: All Meds Removal Update
Post by notseinfeld on Apr 27^th, 2004, 2:26pm

Ann--
not exactly that way for me. My biggest problem was the effect of the triptans in my system and not so much the preventatives. Apparently binding to those receptors was yet another thing my wacky neurochemicals could not handle thus I was getting pounded in the beginning. After 12 days or so things settled down and while I still do get hit occasionally the 02 handles it well.

Plus, I have to detox for shrooms anyway which should address the problem of our condition and not mask the symptoms. The sooner your body (anne) adjusts to the 'no med' state, the sooner it'll start repairing itself. (In theory, of course).

Title: Re: All Meds Removal Update
Post by Ann on Apr 27^th, 2004, 8:07pm

Thanks Nots! I took the day off work today and I actually managed to get some sleep this afternoon. I slept from 1:30 to 4:00!!! Wow!!

I think your right about detoxing. I think that's what's been happening too...but man I'm anxious for the worst to be over. I didn't even sleep in my own bed last night. I "slept" in the spare room where I keep my O2. My hon was looking for me early this morning! hehe I have a call in to the neuro to see if there's anything I can do in the meantime.

Life was great before...can't wait for May 20th when I can get back on my meds. Take care of yourself Nots....let me know how the shroom thing goes k?

hugs
Ann