Hey guys, just wondering if any of you take the Demon on without any Meds?  I have tried most courses of different Meds and have found over the years that I am better off without them.  However it is not easy to to!

Hi there

I can do the low kip hits with no meds but i would crack up if i had to take the high kips with out meds i did it for 2 years like most here undiagnosed terrified and just in a bad place i cant go back to that.

i could do it with nothing but o2 though although it dont work great some times it always lowers the pain if it does not stop it

I went through 10 years of attacks with little more than ineffective Tylenol.  When I first got my proper CH meds (Maxalt, Verapamil) during this cycle, I told myself that I was going to try to use this sparingly because of the side effects.  But, once an attack hit, all my convictions went out the window.  I reach for the Maxalt.  

However, I still have not opened my bottle of Verapamil because the doctor told me it would take 4 weeks to take effect.  I was figuring based on past experience that my cycle was going to end before verap would begin to help, and my cycle did end within 10 days of my doctor visit.

Don't know about next time.  Verap still seems pretty scary to me.  I'm predicting that my fears will go out the window, and I will be willing to try anything to stop the pain.

Whats scary about verap?  I thought it was fairly safe to use.

I try to go med free (except O2) as much as possible.  However, I use Maxalt MLT (trex injects dont do squat for me, dont know why).  Prednisone has its limited effectiveness.

When my limited meds dont work, I move to my last resort....... Ztprexa.  So far it always works for me.

There is a school of thought here that some meds, specifically the triptans, may actually extend a cycle. Some go it competely med free, I tip my hat to them, but not something I could do. I find lithium as a prevent, with oxygen and cafergot as my abortives, and the occasional imitrex jab, works so well I couldn't imagine abandoning it.

Have you tried oxygen? As close to all natural as meds get, no side effects, and incredibly effective as an abortive when used correctly. If you haven't tried it you really owe it to yourself to give it a shot.

Guiseppi

Hi Brad,

Very good question! I've been on both sides of that question +.

26 yr clusterhead. For the first 2-3 went undiagnosed, no meds, no nothing but terror. Discovered oxygen which saved my sanity and THEN the parade of about 20 meds (though no triptans) for the next 14 yrs. Minimal success except the O2 (60-90% depending on cycle).Name the side effect, I dealt with 'em until I couldn't deal with them anymore (plus the concern over long term effects). One, in fact was verapamil, which sorta worked for a while then stopped.

Made a tough decision and stopped ALL meds except O2 for the next 7 yrs. Absolutely no difference in cycles or kip levels (higher when younger). At the end of 7 I couldn't take it anymore and desperation set in. That's when I went to a neuro for the first time. She put me back on verapamil at a higher level (which she said the other Doc should have tried), plus Topomax (BAD experience) and Zomig NS (which is blessed relief as a last resort). Doing ok now, I guess...

Coincidental or causitive (don't know, tho some think the later)with the triptan use, I am now chronic. BUT, don't have the guts anymore to go med free, tho have and continue to strongly consider kudzu and clusterbusters. BTW, the same neuro is strongly against taurine as contained in energy drinks. It is her opinion that it is a causitive factor in prolonging or increasing CH. Have had too much success (as have others) to completely buy that yet...but, she is a recognized headache expert and I wonder...

Best wishes that you find the right path,

Jon

I gave up on all the meds fully 15 years ago.  Either they didn't work or they made me less able to properly cope with the next hit. Since then my cycles and individual hits have been shorter, cleaner and far more predictable, a big plus when dealing with this nightmare.

This is by no means a reccommendation to others, merely by way of replying to a perfectly reasonable question, and anyone who wishes to know more is perfectly free to PM me.

Cheers and beers to all,

Brian.

I've been med-free since the mid-1970's, by choice.

I should explain, first of all, that I am a clockwork episodic, and have never been chronic.  

There are certainly better choices in medication nowadays, but at the time, the choices consisted of Sansert, Periactin, Caffergot, and various narcotics.  None of them did me any good, and the narcotics seemed to actively make them worse.

So I chose to face them with nothing.

I haven't regretted that choice.  As Brian said, the hits are cleaner, the cycles have not been extended, and the overall number of hits has not increased.  I've cautiously added a few things over the years--things that have not increased the intensity or frequency of the hits--melatonin, which has unquestionably decreased the number of nighttime hits, and magnesium, calcium, and B6 supplements (to unknown effect at this point).  I intend to add oxygen to my arsenal during the next cycle as an abortive.

See--as time goes on, my cycles have been getting farther and farther apart.  I've gone from twice-yearly cycles to one cycle every three years.  I'm unwilling to mess with whatever natural process seems to be in play that is reducing their overall effect on my life.  

So...for me, the decision to go med-free was a good one, as far as I'm concerned.  I don't necessarily recommend it to others.  It can be a rough road, and it depends so heavily on what we can individually endure, and what we are individually faced with, that I don't see how there can be any one answer.  If my CH had been more frequent, or if I had been chronic, I may very well have done something entirely different.

Best wishes,

George

I keep on advertising the Spaniards pumping exercise technique.
It doesn't get any more med-free than that.  I usually do it with an energy drink.  Imitrex I take for work only and because of it, I haven't missed work in years.

I think med-free is not necessarily a viable choice, but everyone should aspire to be med-free or take as few meds as possible.

I have read so many reports about rebound cluster attacks, rebound migraines and rebound headaches caused by the overuse of meds. Triptans are definitely on the high list with rebound attacks. There was a post somewhere in the clusterheadaches forums about a person taking triptans every day and having more CHs on consecutive days.

Personally for me, taking daily triptans or NSAIDs seems to cause more intense hits / shadows on consecutive days. I would advise everyone to be careful about overusing the meds...but I can understand how the individual situation in life might demand it - e.g. work, taking care of children, so on. Still, it can be possible. I don't use any abortives with my CH attacks, and I'm a probable chronic with daily hits, with my CH going on now since the last September.

My best regards and PFDAN to everyone,
Rosa

The only thing I'm using now are rc seeds and 02.  I gave up on Rx meds (side effects and cost) and really do not want to go that route again if I don't have too.  I do have zomig "just in case", kinda like a security blanket, but I would only use that as a last resort.  Hopefully, I never will.

If I had to choose only one thing to fight the beast, it would be 02!!

Beth

Ungweliante wrote on Aug 27^th, 2008 at 8:31am:

I think med-free is not necessarily a viable choice, but everyone should aspire to be med-free or take as few meds as possible. I have read so many reports about rebound cluster attacks, rebound migraines and rebound headaches caused by the overuse of meds. Triptans are definitely on the high list with rebound attacks. The was a post somewhere in the clusterheadaches forums about a person taking triptans every day and having more CHs on consecutive days. Personally for me, taking daily triptans or NSAIDs seems to cause more intense hits / shadows on consecutive days. I would advise everyone to be careful about overusing the meds...but I can understand how the individual situation in life might demand it - e.g. work, taking care of children, so on. Still, it can be possible My best regards and PFDAN to everyone, Rosa

Facing a hit with no abortive terrifies the heck out of me.   I used to be able to do it but I guess I've become weak in my old age.  I just can' t do it anymore.

Jeannie

I am not med free, however I am finally pharmaceutical free. I use shrooms, and seeds for a prevent and abortive. I use caffeine and 02 for immediate abortive until the seeds soak or the shrooms take effect. If it is hard, fast, and critical I use the shrooms, it aborts in 15 to 30 minutes. I am now on my third year without a full blown episode. Nothing more than shadows and the occasional jab to remind me to dose.
As a younger man I could toughed it through, even a high kip hit. Not anymore, since the 40's have arrived I found that without an abortive I have passed out more from pain than getting through it. I could not let that continue, the wife said she could not endure me passing out from pain. It really sucked from my perspective as well.
All these meds are great when they work, it's when they don't work..then what? Thats when it does get a bit scary. When the meds aggravate the demon,that is what scared me. After so many years of medicinal failures and pain, you find what works for you very quickly.
Now with dust on my 02 bottle and expired trex in my dope bag I contemplate what will the demon do next? I remain hopeful and optimistic I will flame the demon bastard with something, something that works, something I have.
Med free or med full the demon is going down before he gets the claws set in my temple. One way or the other. There is no other choice. I cant take that pain any longer and I am tougher that hobo shit. If I can hold the bastard demon back through my 50's I have him right where I want him. 8-) In memory. :)
all the best
thebb

It depends on what you mean by "MED FREE" ... do you mean TOTALLY med free?  Both preventatives and abortives?

I made the decision several years ago to go preventative free, as they were doing very little, and I felt that long term could cause problems.

But there is NO WAY I can handle going abortive med free!  Now, true, I mostly use oxygen, but every now and then, I do stab myself with some trex.

Getting an average of eight hits a day, during my normal cycles, and up to 20 or more per day during high cycle, most being KIP 6 to 9, there is no way I would still be alive without my abortives!

Chuck, the wimp

Hey Chuck,

I'm feeling kinda whimpy too... And I'm episodic!  20 a  day? !  No way you are a whimp!  

I couldn't make it without my Trex .... going to try 02 next cycle.

Jeannie

I don't use meds myself.  Last cycle was Kudzu and O2.  Next cycle will be Kudzu, Taurine and O2.  I only went 1 cycle in the past with meds (Trex & Depakote).  Never again.

Though he probably shouldn't have said it- when Prof Goadsby was asked the direct question if he thought prevents worsened the condition, his answer was "probably"

When I added this to all the anecdotal stuff from chronic sufferers who truly believe that if they knew what they know now or had had the correct treatments like 02 earlier they would be in a better state I made a personal decision I have stuck to (so far!) and my condition has not worsened at all in 5 years- in fact it might even be improved as I have had two clear years and this current cycle is copeable.

1. No Prevents of any kind beyond occasional prophylactic use of long-life triptans e.g. Frovatriptan to buy me some sleep when I am desperate and ill/dangerous through sleep deprivation
2- 02 for all attacks
3-If 02 fails (rarely)- nasal Zomig and continue 02 to dampen down the pain while waiting for Zomig to act (circa 8 minutes)
4. On even rarer occasions, perhaps 2 or 3 per cycle an Imigran injection if the pain levels have escalated to unbearable fast and 02 is not working.

I only use drugs if I have to, and even then I avoid the "older" ones like Imigran(trex) as the side effects are much worse for me than the more recent ones.

Never say never, and every person does what they need to do but I am personally SURE that as prescription drug free as you can be has to be best.

W the B

O2 rules !!!! I don't know where I would be without my tanks and Clustermasx (which makes a really significant difference to the speed of abort)

I want to reiterate.  As long as I'm sane and conscious, never again will I take meds for my cycles.

Melissa wrote on Aug 28^th, 2008 at 4:36pm:

I want to reiterate.  As long as I'm sane and conscious, never again will I take meds for my cycles.

Why not?

Jeannie

If I didn't have to work, I'd go med free (excluding melatonin, oxygen and magnesium).

Jeannie wrote on Aug 28^th, 2008 at 4:48pm:

Melissa wrote on Aug 28th, 2008 at 4:36pm: I want to reiterate.  As long as I'm sane and conscious, never again will I take meds for my cycles. Why not? Jeannie

Because I believe they prolong my cycles and increase the intensity of my hits based on my past experience.

Good post brad, you will probly see many of us took on the beast at some point without meds, you will all so see many of us could not go on forever. For me i never have been on any meds while not in cycle and it will mostly take me about a month or so to get back to the doctor. Thats because the beast is just running rampant with me then and to stay sane the meds were needed. I dont know why all of us seem to go thourgh that suffering 1st before we go back on meds? I think it may be just a lowly holdout thought that just maybe this time i can beat the demon myself, I think it's just the battle warrior in all of us clusterheads. Thanks Coach Bill