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siouz76

Episodic to Chronic?

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Would any of you share your experience of going from episodic to chronic?  I am starting to feel like I need to prepare myself for the fact that this cycle is never going to end and I'm going to have to make some changes to my life to adapt to this new reality.

I would like to hear from anyone who has gone from episodic to chronic.  I'm interested in finding out how that change occurred and how you dealt with it.

I have had episodic clusters since December 31, 1999.  They have never been like clockwork for me.  Sometimes I'd have a few cycles a year, other times I would go 2 or 3 years without a cycle.  During my pregnancy I had 2 cycles that lasted for a few months each, and disappeared completely the day after I had my daughter. 

This cycle has been different.  I've tried 7 different prescription drugs, the D3 regimen, kudzu, Vit M x 3, countless doses of seeds.  Nothing has given me much relief or made a noticeable change in this cycle. 

From reading the message boards I know that I am still better off than many others and I try to keep that in mind.  Some weeks I only have 1 or 2 nights with a few cluster headaches and most of the time they resolve with O2.  But other weeks I have multiple nights where I have one about every hour and the next day I'm left with a migraine that only resolves after drinking a full pot of coffee.

I've been on this roller coaster since the beginning of July.  5 full months with no end in sight.  I've gone through stages, the first few months I was in panic mode but now I've stopped worrying so much about them.  I came to a point where I decided to stop putting my life on hold for these headaches.  But now I'm starting to lose hope and starting to wonder if I should accept that they aren't going to go away.  I think it would be helpful to know what others have gone through.  How did you explain things to your family and friends?  I have been in a relationship since January.  Half of our time together I've been telling him that this is just temporary and I'll be free of the headaches soon.  At some point I should probably admit that I may be wrong.  This might be a part of our lives for more than "just a few more weeks." 

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Siouz,

I didn't notice above if you've tried shrooms yet?  They work MUCH better than anything else I've tried.  I'm in the final stages of hopefully slamming my current cycle to the dirt.  Seeds worked great for my first cycle I ever tried busting, but haven't done much of anything since.  If you haven't tried shrooms yet, I'd highly recommend it.  They have given me my life back, and then some!! :)

PFW,

Jeff

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Jeff,

I've tried them twice this cycle.  I didn't notice a big change in my headaches.  I would have tried again but haven't been able to obtain any more since the weather has changed. 

I'm glad to hear you are doing better!

-Siouxz

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Siouxz,

I had a cycle several years back that lasted from Thanksgiving to St. Patrick's Day. That would about 16 weeks. Most cycles for me are about 6 to 9 weeks, so I was really getting worried. I was on every med the neuro had to offer. What I found was that they only made things erratic, more painful, and lengthened the cycle. I was about to lose my mind. One night I could not take it anymore. My husband called the doctor who told him to up my doses....I screamed and threw every bottle and needle in the garbage. I took the HBRW seeds and my cycle ended immediately for 2 years. The next cycle was shorter and easier. I maintained with RC seeds after that, but did not stay on schedule. 3 years later and now am in another cycle for about 5 weeks. I only had 2 rough weeks of night hits.  No day hits as I have dosed every 5 days, alternating seeds and m. They are not gone but are under control. All I can say is that you need to get away from the medication if you can. If you respond to the 02, caffeine, and m, then rely on them. I know the pain can be horrific, but if you can manage to detox, then the other things along with the D3 reg may get you back to normal.  Also, I was in cycle for about a month before I delivered my daughter. The cycle ended the day after she was born just like you! I told the doctor that the labor without meds was a breeze compared to headaches. He did not understand or believe me. I don't care for many doctors these days. This cycle will end. Hang in there.

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I'm beginning to feel a little nervous myself. I'm going on 3 months now myself of these darn headaches. I was huffing oxygen last night a few times for about 20 minutes each time. Well lets say I was up to 20 minutes the third time. I was having a hard time staying awake once a little relief came while on the O2.

I'm taking D3 regimine and I've upped my D3 to 20,000 IUs per day for the last week or so. Seems to have helped but this cycle should have ended by now. The most I've ever gone before was maybe 10 weeks in cycle. I'm now around 12 weeks. Last cycle last year the D3 regimine knocked it out in no time flat. This time not so much and O2 is taking forever. It almost feels like I've got tension headaches combined with Clusters at times too.

I've been under a great deal of stress so I can't imagine that helping the situation. Being that I'm super stressed I'm afraid to dose to high with RC seeds as my setting isn't really desirable. I checked my blood pressure the other night after work and it was 134 over 95. My blood pressure is usually 115 over 80 or less. I'm also guilty of not drinking enough water. Red Bull seems to help tremendously where in the past, not so much.

I'm going to ask my doctor for Imitrex pills for when I don't have access to O2. A Red Bull along with that and even a little O2 if I can get it would only make me have say 20 minutes of moderate pain I'm guessing. I feel the Imitrex pills are needed as a standby. I've never tried them though.

Anyone have experience with Imitrex pills?

One other thing, last cycle and every one before that, I had quit smoking. I'm wondering if that is one of the culprits perhaps. Maybe if I quit smoking it will help end this cycle?

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siouz,

I think we all worry about going chronic when we experience a cycle that is longer than 'normal'. I am not sure there is a 'way' to tell if that is happening. By 'old' definition, chronic is a year with no longer than two weeks pain free. The 'new' definition is four weeks pain free.

Weather patterns seem to jack-up the Ch hits too. So, if there are a lot of low pressure fronts moving around, CH events tend to rise, along with migraines. Currently, it is that time of year for much of the nation

Normally, I will have one or two episodes lasting 3 months each. About 6 years ago, I had a six month stint in hell. Last year, a full seven months of hades. Started in earnest in early Sept and ended March 20th. That is not counting the start up 'rogues' or the dying last stabs of the cycle. It took 2 months to blow the dragon away. I too though it would never end. Slap backs, PF a day or at most two, then back to hell. Start over. Repeat.

The only way to know if it has become chronic is to mark the calendar. At least to my knowledge. Every site I have checked just gives the year mark as a definition. Sorry.

I detoxed in Oct/Nov of last year and have not touched scripts since then. I had tried several courses of Pred and numerous other meds. Coming off the Pred always sent me back into high cycle and the other stuff just sucked. Verap was the most helpful, even though it cost me two teeth. FYI, the short acting that you take 3-4 times per day is more effective than the long acting version. ;D I was off it for over a month before I saw much relief. When Topamax was prescribed even though I was severely under weight, I quit the neuro except for an annual check up. They are now putting that into diet meds for crying out loud!!!!!! I, like many others, found that the meds were useless and appeared to extend the cycle.

I don't think this answers your question, but maybe another tale of conquest will help. Beware the weather. Watch the barometer. It gives me advance warning of a heightened possibility of hits. Take the best care of yourself that you can and enjoy life to max when possible. Just having a positive attitude is good. :)

All the Best!

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Thanks everyone.  I've been off prescription meds again for 3 weeks and I honestly feel so much better.  I don't know whether the drugs lengthened this cycle or I just didn't get any of them enough time to actually work.  I just hate the side effects so much that if I don't see the benefit pretty quick I can't stand to keep taking them.  Maybe I need to try another type of seed? 

Spiny your post gave me a little more hope.  Maybe this is just a crappy long cycle. It's true, the weather has been so up and down this fall. 

At least my O2 seems to give me some relief, even if it is only temporary.  I know what you mean ob1, I've had so many long nights lately.  The O2 will kill the h/a but some nights I wake up every hour with another one.  One morning I woke up and my tank was empty.  I'm pretty sure I fell asleep more than once that night with the O2 on.  :(

Take care everyone!

-Siouxz

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I'm pretty sure I fell asleep more than once that night with the O2 on

Well that's always a concern with the lousy once every hour night hits isn't it?  :( HATE those.  >:(

Hopefully you are holding the mask to your face, so if you fall asleep it just falls away? It's dangerous as you already likely know to fall asleep with a mask strapped on.

I suppose another idea to prevent running out of the O2 would be to set an alarm for 20 minutes or so from the time you start the O2. I'd be tempted to do this with my iPhone - maybe someone can comment on whether there's any significant spark/fire risk of operating a smart phone while on the O2.....

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I had a heck of a time busting my first cycle with shrooms - I was in the middle of a cycle - it took 3 weeks of doing them and the final dose was close to 3 grams....it worked finally. hopefully you can find more.

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Siouz,

I am 54 years old and have been a cluster head going on 20 years. I don't know if this helps but my SHORTEST cycle has been 7 months and my longest 18 months. I am still considered episodic because my remissions usually match my cycle length IE: 14 month cycle 14 month remission. Somebody once told me I am called a hard episodic. I don't know if this scares you or gives you solace but I hope it helps. I am just coming out of a 13 month one and I can say that busting with seeds or shrooms every 5 days completely lessened frequency, and pain level and made caffeine and 02 much more effective. Good luck and I hope you get relief soon.

David

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I probably should be setting my phone timer.  That's a good idea.  Hopefully I will have enough sense to remember to do that.  This has been going on so long that I think grabbing the O2 happens like clockwork when I'm not even fully awake, especially the 3rd or 4th time a night.

davidj, I actually do find that very reassuring.  Even though mine have never lasted nearly this long, they have come on at unpredictable times and lasted for various amounts of time.  I don't envy your long cycles but at least you can look forward to some pain free time once it's over.

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