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dereksgirl

question about busting

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hey all, after 14 yrs of ice packs, we finally, thanks to you, have an idea of what we are fighting. We found this sight in Jan about mid way through my hubbys 7 week cycle. As I was reading the busting info I noticed some warnings that made us pause and research the risks. During that time of searching, and waiting to see a neuro (total waste of time) his cycle ended. So we were unable to bust. But after 14 yrs of very clock work cycles, 2 yrs each (except for very early on we think they were a little farther spaced- also his first ever cycle would only hit in daytime hours, after that they have almost always been night time hits) 1 main 3 hour killer each night,slight shadows and maybe light 1-2K occasionally. Then after finding this sight, we set an appointment with a doctor,who was great, prescribed us oxygen and sumatriptan. (had to wait a month to see the puppet, oops meant neurologist)The night before we saw that doctor his pattern changed. Went to 4 hits a night, on a definite pattern and man oh man was he thankful for that triptan! That pattern continued for about 1-2wks then they started tapering down and we assumed his cycle was over (big sigh of relief) at about that time he was hit with a head cold, compliments of our 4yr old and has been fighting that for about a week now. Strange thing though. During that week he is getting hit with a "different" type of headache. Same neck feeling, kinda, but no eye pain. On and off this keeps coming, maybe one, not quite every night, around 8 or so - which is the time his early hit started when he went to 4 a night. Every time now he grabs an ice pack and it helps. Then tonight he gets it again, but this one is closer to a CH, radiated into his lower jaw - not yet to his eye. I can see the fear in his eyes. I have been thinking all along, this cycle is so different, the head cold messing with it...maybe he never really ended...maybe they are re-bounds??? So I have a couple questions...

Could it be rebound from the triptan use? Is this what re-bounds look like?

Has anyone experienced this while episodic... and not turned chronic?

Also, usually busting is a last resort, but we feel that it is more natural, safer and more effective choice than what the doctors are offering. We have never tried any of the traditional drugs (besides this recent use of Sumatriptan). Legalities aside, is there any  reason you could think of that it would be wise to try the traditional therapies offered before busting?

TY so much for your thoughts and your time, I know this is a long post, but you guys are detail junkies ;D

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Dereksgirl,

I'm sorry to report that with my 23+ years I've gotten to know my CH I've found that the Dr perscribed meds always seem to extend my cycles. 

Prior to finding clusterbusters I paralleled it to the fact that I had to take a certain amount of pain with each cycle.  A lot of close together high pain hits, or (with the Dr meds) slightly lower kips, but my cycles sometimes went up to 6 months long.

Jeff

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Could it be rebound from the triptan use? Is this what re-bounds look like?

Has anyone experienced this while episodic... and not turned chronic?

Also, usually busting is a last resort, but we feel that it is more natural, safer and more effective choice than what the doctors are offering. We have never tried any of the traditional drugs (besides this recent use of Sumatriptan). Legalities aside, is there anyreason you could think of that it would be wise to try the traditional therapies offered before busting?

dereksgirl,

First off, I hope that Derek's cycle is in fact ending. :)

I will try to answer your questions to the best of my ability.

The new activity that Derek is getting is most likely rebounds from the triptans, as you suspected.  Medication Overuse Headache (MOH) usually presents itself somewhat differently than CH from what I have read.

As far as turning chronic goes, time will tell.  Hopefully not, but unfortunately many have reported turning chronic with suspicions of triptans being the culprit.  I am  not dissing triptans; they have their time and place, but this brings me to your last question.

Legalities aside, and speaking only from personal and anecdotal evidence, I feel that the less traditional therapies that are tried, the better off Derek will be, and the better the chance of successful busting. 

Some of the traditional therapies, including but not limited to prednisone, verapamil, topomax, lithium and opoids have such serious side effects that they can and usually complicate one's health in the long run.  I'm not saying they don't have their place, but legalities aside, I think they are better off left in the medicine cabinet or better yet, never filled.

Just my dos centavos,

bobb

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Hi

When i started to use triptans it made everyhting worse in my opinion. But, at the time i was given them i was thankful. I try not to use them now, but once in awhile i got to. Sometimes we have to say stop to how much pain we should put our selves trough. But what stops me most times is that i know what it brings with, for me it means a burning pain that lasts for hours. It make me want to take more triptans in the end.

I would try keep it as "clean" as possible.

My best wishes to both, painfree days :)

Tingeling

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Legalities aside, is there any  reason you could think of that it would be wise to try the traditional therapies offered before busting?

If the warnings regarding existing psychosis, etc. (that I believe you've already reviewed at http://www.clusterbusters.com/warning.htm) don't apply, then I can't think of any reason to try the toxic drugs first.

Especially since the drugs will really mess with the busting possibilities, but I haven't seen any concerns about CH drug effectiveness being hampered by busting first.

As someone whose relationship with the beast began 30+ years ago, and who has tried everything from just gritting teeth and bearing it, to heavy drug cocktails, to more targeted use of meds plus O2, and now busting, I believe that this here is Derek's best bet:

Bust with intent to quash the episodes before they happen. Prescription drugs = last resort, only to be used if busting has somehow patently failed.

In my case, mushrooms appear to be a more effective busting agent than RC seeds, but RC seeds are really mild on the side effects, and Derek could try taking 50 or so before bed at the first warning sign of shadows, or whenever he feels a episode could be coming back.

If he's like me he'll sleep through an RC dose (a better night's sleep than usual) and won't feel any sort of tripping effect.

I think you'd be very wise to still have mushrooms on hand (in the freezer) and ready to go though, just in case the RC doesn't do it.

I can tell from reading your posts that you really have it together Derek's Girl, and I'm glad to see in your post here that we can count on you to BE PREPARED, have your backups and contingency plans all in a row, and to not get caught off guard. That 'ol beast certainly loves it when a CH'er let's the guard down.

I think that's a tough call about whether triptans, or just the virus, or whatever has caused this unusual extension to Derek's episode. I can tell you that I had episodes start going on way longer than expected before triptans were even invented.

If it helps ease your current worry any, far from going chronic when I started in with major triptan use, my remissions actually continued to become much longer and longer, so triptans, while not to be toyed with lightly, don't always culminate in a chronic disaster for everyone.

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Hi DG,

As usual, the Jeebs gives good advise. The simple answer to your question is no - no reason to try any Rx meds. First and foremost, get hooked up with a proper oxygen setup and learn how to use it. 2nd, taper off all Rx meds and stay completely free of them for at least a week. Concurrent with the first 2, get reasonably healthy (eat right, good sleep pattern, etc.). 3rd, give the RC seeds a good shot at the CH; they just might be the ticket for you - they have been for many here. You can't learn too much about what we're doing here, so keep up with the reading. See if you get any benefit from the NRG drinks.

Anything past the above is either illegal or difficult to use (HBWR seeds). If trying any of the bigger guns is necessary, research them thoroughly b4 using. LSD is the cleanest of the major psychedelics and for most it works better than shrooms but it's difficult to find. Shrooms are a good middle ground and if they work for you, you can grow them yourself. I've probably forgotten a few things, but I'm sure someone will be along shortly to fill in and make corrections. You'll do fine.

Ron

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One regret I have is that I didn't try alternative treatments sooner.  Who knows, if I had tried this back when I was episodic, maybe I never would have turned chronic. ?  I certainly would have saved myself a lot of pain and $ that was spent on countless meds + doctors.

Another thing to take into consideration would be detox. It would be easier to go ahead and give the alternatives a try before getting on several CH meds. 

Were you able to get the 02 script filled?  Since I've had 02, it's very rare that I have to resort to an Imitrex shot. (last one was close to a year ago  :))

Wishing you the best!

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ah phew!! I was hoping to hear that!! [smiley=vrolijk_26.gif]

One regret I have is that I didn't try alternative treatments sooner.Who knows, if I had tried this back when I was episodic, maybe I never would have turned chronic. ?I certainly would have saved myself a lot of pain and $ that was spent on countless meds + doctors.

-I feel it is slightly ironic, that since he had not received "proper" treatment all these years, he is probably in a better place to bust...

Legalities aside, and speaking only from personal and anecdotal evidence, I feel that the less traditional therapies that are tried, the better off Derek will be, and the better the chance of successful busting.

-that is exactly our feelings too, in fact, I don't think I could talk him into DR meds at this point. I just wanted to make sure we weren't overlooking a reason...

Were you able to get the 02 script filled?Since I've had 02, it's very rare that I have to resort to an Imitrex shot

yes, the oxygen is set up, with the correct valve thanks to good ole' Batch  :) he is the man! Derek tried it a few times and had little success. Not sure if part of it isn't just the knowledge that 1) he had triptans to go to then, and 2)he just really doesn't want o2 to be the solution. His focus has always been to bust. (but he waited until I felt better about the psychosis) But we plan on keeping the valve and making sure we have an ongoing o2 script. We know that you can never guess what the CH will do next. If he needs to, he will try again with more "heart"' in it.

If the warnings regarding existing psychosis, etc. (that I believe you've already reviewed at http://www.clusterbusters.com/warning.htm) don't apply, then I can't think of any reason to try the toxic drugs first.

yes jeebs, that was the delay, but there doesn't seem to be a clear link, and since Derek did use acid recreationally in his teens, we feel safe with the LSA.

Bust with intent to quash the episodes before they happen. Prescription drugs = last resort, only to be used if busting has somehow patently failed

wouldn't the doc's have a tizzy fit over this! But that is exactly how we feel after researching. Even the dumb neuro we saw last week couldn't answer any of our questions regarding what the drugs she wanted Derek to take would be doing. Her standard response, "well, on a molecular level, we don't really know what they are doing." Yes, they have their place, and there may come a time when we are grateful to try them, but why do they have SO MUCH POWER over us. It is criminal - just take this drug like a good little boy and don't ask so many questions!! And by all means - don't make any decisions about your health that go against our current regimens! oops sorry - rampage!! :-[

So our plan of attack (assuming these are rebounds and we will get another 2 yr break in his cycle) [smiley=happy.gif] in about 3 months when he is HOPEFULLY clearly out of cycle, go to nice regular doctor and get him to do as many blood/urine tests as possible. Pay for any other tests on line ( I found a cite that sends out kits to test your neurotransmitters,

endocrine and hormone levels. http://www.integrativepsychiatry.net/neuroendocrine_expanded.html ) (The neuro, of course, would have nothing to do with checking levels before administering drugs) This will give us a good base line. Set up heavy, but appropriate vitamin and suppliment regimen to bring all of Derek's levels up to the highest suggested ranges. (Assuming he will be low in some areas) Add melatonin, magnesium, Vit D3, fish oil, B6 & 12 and a dash of licorice and a pinch of skullcap to the mix. Test again in 6/9 months. Determine if levels are where we want them and then adjust as necessary. Then wait. We HAVE to see, I know its risky, but we have to see if that will work. At the first sign of a shadow - break out the pestle or hop on a plane to the BVI. Sound okay???

-so now that I have written a book - LOL - sorry!!!!

Can I just say again...

HOW THANKFUL I AM FOR ALL OF YOU!!!  [smiley=dankk2.gif]

Hugs, DG

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My thought is this : Rebounds happen. If everyone suspects that triptans are effecting their cycles, for better or worse, I'm betting it's true.

If I would have known how easy it was to deal with these headaches through busting before... I wouldn't have gone for any other treatment. My response was "Hallucinations? Oh hell no! DO NOT WANT."

But now I look back, over 2 and a half years wasted trying the doctors approach, I could have saved myself so much pain! It's crazy that the neuro refused to check his blood levels until he was put on drugs for the CH. Why in the hell not? If a normal doctor refuses, you could always demand to be sent to endocrine to be screened.

I think your plan is great!

I'm hoping and praying that it's just rebounds, and that his cycle is ending.

Mystina

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update, still having almost one a day-really mild between K2-4 hit always between 8-10pm(I think he skipped one day this week. Then today he had one at work, lasted about an hour and then he had a 2nd tonite at the usual time. These have all been mild and aborted with ice.

It has been two weeks since he has used any meds. Does that still sound like rebound? We added the vitD and fish oil back yesterday.

PFD to you

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IMHO- now is the perfect time to bust, and finally break the cycle and keep the beast away on maintenance doses. every 3 months. This treatment works for many people to actually keep you CH free, FOR THE REST OF YOUR LIFE! That is your ultimate goal.

Triptans and other meds do disrupt cycles and change the patterns and quality of the headaches. And also extend cycles.

I wish you the best of luck, if it is decision time of whether or not to bust, I think you are wise to weigh the bad side effects of prescribed meds vs the busting option.

I remain pain free and have skipped 2 regular cycles that I would have had like clockwork, Evey year I would get hit twice, every six months, like clockwork.

Thank you Clusterbusters Family, I just passed a usually bad time for me, pain free.

Wishing you well

Steve

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