Hello from KC!

[Enitharmon]

Hi all,

I’m not sure how I never found this place before – I thought I had better Google-fu than that. That said, I am more than glad I’m here now.

IÂ’m male, 43, and married with three kids (14, 11, and 5). I had my first ECH cycle at 20, and have just begun the most recent cycle. I think I was 31 or 32 before I was finally diagnosed with CH, and IÂ’ve had brief or nonexistent success with most of the traditional treatments, for both preventative and abortive therapies.

My current cycle caught me off guard. With one exception in the last 15 years (and IÂ’m pretty sure that exception was triggered by a neck injury), my generally annual cycle has started between late July and mid November. The hit on Thursday caught me off guard, big time. I had a few shadows in the ten days or so prior, but wrote them off as normal headaches, at least until Thursday morning.

My regular course of treatment over the last six or seven years is to ramp up Verapamil to 720mg/day in July, and then back down in January. I had a vicious cycle in Nov. 2008 that lasted twice as long as normal (17 weeks instead of 8), with hits as frequent and intense as any cycle IÂ’ve ever had. My neurologist upped the Verapamil to 960mg/day, with no effect. Near the end of that cycle, I did find relief using lidocaine drops in the nose as an abortive.

In 2009 & 2010, I ramped the Verapamil up to 960 for the last half of the year, and was PF, with only a handful of shadows in that time. (Yay!) After tailing off the Verapamil last month, I thought I was in the clear for another six months or so, until Thursday.

This cycle is atypical in a couple of ways – the time of year (Aside from the injury 8 years ago, I haven’t had a cycle this time of year since about 1994 or ’95), and the frequency of the hits. I normally have between 3 and 6 hits per day when in cycle, beginning in the wee hours of the morning before I wake, and usually including at least one in the afternoon or early evening. This cycle has given me one hit each morning, within 30 minutes of getting out of bed, and I was up at a different time each day. The lidocaine drops seemed to take care of the hit Thursday morning, but only after a second dose. Friday’s hit lasted two hours, and nothing could touch it. Saturday morning’s hit lasted almost an hour, and nothing touched it. At first sign this morning, I slammed an energy drink, and am OK so far (though I’ve been up less than an hour). I can’t be sure that this morning wasn’t just paranoia over the pattern I noticed over the previous 3 days, but I wasn’t taking any chances. I’ve had shadows nearly all day each day, as well.

I’m here, and becoming part of the community, because I’m tired of the weight gain, water retention, lethargy, and dulled senses I get from high-dose Verapamil for half the flippin’ year. I also noticed yesterday, now that I’m in cycle again, I’m already looking for ways to avoid being caught out when a hit comes. Like many of you, I’ve felt guilty for “ruining” family events and plans either because I’ve had a hit in the middle of it, or for backing out rather than get stuck somewhere without any exit or relief options.

After reading through a load of the info here and at CH.com, IÂ’ve decided itÂ’s time to bust. I started to ramp up the Verapamil on Thursday, but realized yesterday that every time IÂ’ve been on high dose Verapamil and gone PF for the year, the higher dose was already in my system when the cycle would have begun. Whenever IÂ’ve tried to play catch-up, itÂ’s been futile. Screw the side effects.

I’ve ordered HBRW seeds to try first, and am looking at Friday for my first dose – fortunately I telecommute two or three days a week (and Friday’s one of those days). Barring more frequent hits, I should be able to finish my real work before then, and only check e-mail in the afternoon.

I used LSD recreationally in college, so IÂ’m not terribly concerned about potential psychedelic effects. My wife also used psychedelics in college, and after seeing how CH affects me, sheÂ’s on board with anything that has a real chance to tackle the pain.

IÂ’m looking to live my life, and I gotta tell you, I find the stories here inspiring.

[TakinitEZ]

Hey there KC. Welcome. -T

[CHfather]

E'mon, you've probably read enough here to know that you want to get started on an oxygen setup right away. Have you reviewed the "oxygen page" from the black-and-white "menu" tab on the left side of the page?  Not knowing what you might already know, I'll just give the usual advice -- read and ASK QUESTIONS. It's not just the stories here that are inspiring, it's the amazing people telling them, too.

There's good information at the links page, too: http://www.clusterbusters.com/ (click on "other links"); and in the "clusterbuster files" you can access from the "forum jump" menu at the bottom right of the page.

You might want to order an Optimask right away.

I always give the caveat that I am not a CH sufferer myself -- my daughter is.  But I will say that we found HBWR seeds tough to work with, and RC (rivea corymbosa) much easier and, in my daughter's case (and many others), quite effective.  I suspect you won't have to worry about any work-interrupting psychedelic effects from seeds, but I suppose you're wise to be cautious.

I don't know what it's like to come off that much verapamil cold turkey, if that's what you're planning to do in order to detox for a bust in five days.  It's possible (others here will know better) that you want to have the oxygen for aborting before you do that.

In any event, you are in many good hands here.

[Hipshot]

hi there new guy. Welcome to the community.

CHFather is a cool dude and gave you some good advice. OXYGEN FIRST. It is by far the best abortive, can help knock out a hit in just a few minutes in many cases. It must my done correctly however. At least 15lpm and an optimask. It is cheap and effective.

I would caution you to not cold turkey the verapimil. Those are huge doses that your body is used to having. I would taper off dropping one pill every three or four days at least. Better safe than sorry.

You will also find that the oxygen therapy works even better once you begin busting. The combination is a life saver for a lot of us.

I'm sorry you had the need to find us but we are glad to have you join the party

Dan

[Enitharmon]

Thanks for the replies and the welcomes!

CHFather, I didn't go straight up to 960 on the Verapamil - I stepped up from 240 to 480 yesterday before deciding to detox from it. I'm back down to 240 today & Monday, and then done.

I've reviewed the oxygen pages, and plan to call my neuro first thing Monday AM. I could hold off busting for a couple of days if I need more time to get the proper equipment. I've ordered the o2ptimask from CH.com, and will push hard for large tanks and a high-flow regulator from my neuro.

My neuro is generally willing to follow what I'm willing to try, so I don't see any huge problems here. If she's unwilling to give it a go, there's a Harbor Freight store about 25 minutes from my house so I can get a regulator.

If the HBWR seeds don't work, I'll order both RC seeds and a fungus kit. Getting hit after more than 2 PF years, I'm ready to get aggressive about keeping this at bay.

Here's one question: I'm on Lisinopril/HCTZ for hypertension (Verapamil was a logical add-on for the clusters since the doctors claimed it "plays well" with Lisinopril). Does anyone have any experience or information on whether ACE Inhibitors and/or diuretics interfere with busting? Or should I break that question into a different thread? I tried the search function, but didn't find anything.

Thanks again for the warm welcome!

[Keith]

Hi En,

We have a lot in common; welcome!  This group is an amazing bunch of tough, compassionate individuals.

You're on the right track.

Keith

[Enitharmon]

Hi En,

We have a lot in common; welcome!  This group is an amazing bunch of tough, compassionate individuals.

You're on the right track.

Keith

Thanks, Keith! I've spent a lot of time here since finding the site on Friday, and your assessment is bang-on!

I'm really looking forward to becoming part of this community.

[Bejeeber]

Glad to see you're getting that O2 set up in place, then taking the next steps after it's working for you.

It also sounds like you have a good strategy, requesting an effective O2 prescription from the doc, but having a good back up plan when/if that doesn't work out as hoped.

The vast majority of neurologists are unaware of how O2 is effectively used for CH and refuse to prescribe it properly. So if you're losing that argument with the doc, just saying "OK I'll administer it at 10 LPM, gimme the prescription" while your eyes are rolling to the back of your head and your fingers are crossed, then proceeding straight to harbor freight and cranking your tank up to CH busting LPMs oughta work.  8-)

[Enitharmon]

Thanks, Bejeeber!

During the last cycle about 2 1/2 years ago, I asked the neuro for 02, but didn't know I needed a high-flow regulator or a non-rebreather mask. So she told me to try 1 L/min with the nasal cannula. Worthless. I cranked the regulator as high as it would go (8 L/min, IIRC), and still nothing. So I returned it when the cycle ended, and didn't think anything more about it. Until this week...

I gotta tell you, even after a couple of days of reading, I'm a little overwhelmed by the way everyone here has taken the time to tell their stories, share their experiences, and support each other through this crap.

[CHfather]

For your call tomorrow:

We found that bringing these two articles to my daughter's neuro helped her get the right prescription, since they're from respected journals and they're clear about the need for high-flow, non-rebreather delivery:

"High-Flow Oxygen for Treatment of Cluster Headache" Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full

"Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey" http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

[Enitharmon]

Thanks CHFather! Downloaded and ready to go!

[Bonkers]

Hi E'mon,

It's great to see how aggressively you're taking the bull (many here call it the "beast") by the horns and you're being given awesome advise by those who have responded so far. The proper use of high-volume, oxygen hyperventilation has proven to be by far the best abortive anybody's come up with and probably the best place for you to start. HWBR seeds are very difficult to work with, almost impossible to judge the dose size of and are capable of producing such frightening hallucinations that you might be better off starting with RC seeds. Many here have had amazing results with them. Shrooms and LSD are the biggest guns we've got. They're very effective for about 3/4 of the CH population. They're also illegal. LSD is very hard to come by; shrooms not so much. Before investing the time and money in a mushroom garden, you might first see if you can find some to be sure they'll work for you. There's a lot of information here. The ClusterBuster Files probably contain as much, or more, information about treating CH with psychedelics, in one place, as any medical library in the country. Everyone here is anxious to help you so don't hesitate to ask questions about anything you're uncertain of. Welcome to the forum and good luck. Here's a video that might interest you:

It's a talk given by our fearless leader and founder, Bob Wold.

Ron

[Enitharmon]

Thanks, Ron!

Getting hit after almost 2 1/2 years PF, I'm ready to do battle. The more I read here, the more it seems RC seeds are easier to work with, so I may go that route.

As far as shrooms go, I'm not afraid of a little expense in terms of cash or time if it means beating the beast back into submission. I like the challenge of a little DIY project, as well.

So far, the info here has been just short of overwhelming, and the people have been amazing!

[clustermom13]

You will actually find that farming is quite inexpensive.  There is a series of 4 videos on you tube "Let's Grow Mushrooms", where they explain the process and show how easy it can be.

Regarding your dose timing with seeds and work:  my son likes to dose at bedtime (with seeds) on an empty stomach, it allows him to sleep through the minor effects.  Usually his post dose hits don't start for about 24 hours after the dose-if he gets them, so that first 24 hrs is pretty benign.  Once you see how that first dose goes, you may find that you could dose on a Thursday night, work Friday, and then fight the expected elevated activity over the weekend.

[Enitharmon]

Thanks for the suggestions, Clustermom! I'm looking at dosing this weekend, since I have a few days off next week. If I dose on Friday, then again five days later on Wednesday, I *should* be in good shape for an all-day training I have at work on Thursday.

I took a look at the youtube videos last night. The process seems pretty straightforward, and I already have a few of the jars they used for the cakes.

I called the neuro this morning, and actually talked to a live triage nurse rather than leave a message (a first!). I told her I needed a large tank, a high-flow regulator at least 25 LPM, and a non-rebreather mask. She said she'd send an IM to the doc and get back to me once she had something. It's only been an hour, so I remain cautiously optimistic.

[Bonkers]

Damn, Dude! You don't like to waste time, do ya? You'll have your bull (beast) on the ground in no time. Good on you! Ron

[Enitharmon]

After two-plus years of PF days, I'm in no mood to jack around this time!

[tingeling]

Hi

Welcome

No need to waste time no. Good luck!!

Tingeling

[Enitharmon]

Thanks, Ting!