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ClusterBusters
Since 05

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As a 10+ year sufferer it was great to find this site. Thanks to all for the large amounts of information. My background is - cycle begins following large stress events i.e. Hurricane Katrina. I have seen numerous docs and been treated as a "seeker" in emergency rooms. I am a smoker and Pepsi drinker. I tried oxygen and it didn't help. I just started the d3 regimine this week which is also when I learned of the Austin Covention (unfortunately a day late). I have tried every form of doctor prescribed meds and the only functional are verapamil 240 and sumavil injections. When I max out injections I wind up at the er for the dhe45 crap. After that series I go home and they ramp back up. Then multiple injections put me back at the er and dilaudid finnegan and Benadryl knock it out for a day or so. Does this sound familiar anyone? Currently I am in a pretty determined cycle of 2+ months and have nerves in the top of my head causing the strongest pain. This familiar to anyone? Now to the point - I am ready to try Busting. I am at the point of looking for a street level person to help with the MM to try to help with this current cycle. It has myself and my "AWESOME" wife wearing down. I will begin my own development after this cycle but desperately looking for help to get passed this one and get my mind back. I live in Louisiana. Any help or direction is greatly appreciated.

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Yup, sounds familiar and many share your experience. There are lots of good summaries on the board for nuances on treatment standards and not everyone responds the same way. Also the perception of effectiveness differs individually. Some folks feel anything but complete resolution is a fail while others are delighted with a decrease in duration, intensity or a lower threshold for things like oxygen or a lower dose of imitrex working. There is also a difference in treating while in cycle, busting a cycle or trying to prevent a cycle. Keep this in mind when browsing the repository of knowledge and experience here. Figure out your options, try them systematically and be flexible with what works. Educate yourself and direct your care as best able. Once you digest the info available in places like this you will be more familiar with option than most docs.

Anyway, to directly address your question. Growing is a bit art and a bit science stirred with lots of patience and perseverance. The best way to start is pfTek which uses canning jars and outlined in detail on this site. (I don't know how to link but it's relatively easy to find, the more senior members are very helpful with such shortcuts). The video "Let's Grow Mushrooms" is available online in several formats. Search the title plus roger rabbit and it should pop up. It takes more time than you would expect to get fruit but it you follow the directions success will come even if you get a fail once or twice.

I am sure better advice will follow this post but it's a starting point.

As an afterthought, It might be the barometric pressure changes not actual stress (Katrina) triggering you when I get to the southern coast and a front moves in I am toast in or out of cycle. Consider coming to Chicago next year. Just finished my first conference and it was extraordinary (coming from a cynical soul) plus it's beautiful in Chicago that time of year (mostly). Good luck

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Pebbles', I just want to say how much I appreciate your thoughtful and helpful posts. You are a great contributor here. (And your description of the conference brought a few tears to my eyes.) 

 

Since':  I'm just going to mention a few things for right now. (I would recommend rivea corymbosa seeds as an alternative to shrooms, but I think Louisiana is one of a handful of states where those seeds are illegal).

1. So many people come here saying "I tried oxygen and it didn't help."  In almost all of those cases, it was because there was something wrong with their oxygen setup or how they used it. If you're willing to give it another try -- it's the most important thing you can have on your side -- we can discuss it more.

2. You say that 240 Verapamil seems to be helping you.  You might get better relief at higher doses (if you're medically okay to do that). 960 is not an uncommon dose, so you may have room to increase, with your doctor's permission.

3. I hope your Sumavel is 4mg, not 6.  3mg and even 2mg are sufficient for most people with CH, but in order to get those levels you have to have a different delivery system (it usually involves taking apart the autoinjector, but some people can get their doctor to prescribe syringes and vials).  Obviously, the less triptan you use with each injection, the more you can use without running out or hitting the 12mg daily limit.  A lot of people feel that triptans extend cycles and cause rebound attacks (and there's some research evidence that that is true). Another reason why you need to get O2 working as your abortive.

4. An energy shot such as 5-Hour Energy, drunk at the first sign of an attack, can lessen the severity of an attack or even abort it.  Your Pepsis might be helping a little, since caffeine is the key, but the energy shots have more caffeine and they also have another ingredient, taurine, that seems to help.

5. Some people find that putting their feet in very hot water in a bathtub will stop an attack.

6. It's great that you have an awesome supporter!!

7. Roughly 80% of people with CH smoke. There doesn't seem to be any connection between smoking and getting CH attacks, in the sense that most people who stop smoking don't report any lessening of attacks.

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Pebbles and CHfather - I thank each of you for taking your valuable time to respond. I just learned today (after drilling the doctor) that sumatriptan is now available in 3mg dosage injections. Amen. You have given so much in just a couple of communications! I thank you and will follow the suggestions. Be blessed and be safe!

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Please see what you can get from your doc regarding re-trying oxygen.  All you need from the doc is a prescription saying something like "Oxygen therapy for cluster headache. 25 minutes at 15 lpm with non-rebreather mask."  When you tried it before, you might have had a concentrator and not cylinders, and/or you might have had a flow rate that was too low (15 liters per minute is pretty much the baseline for most people), and/or you might have had nasal cannula or some other device rather than a non-rebreather mask.  If you get the basics that are in that prescription, that might do it for you, or you might have to upgrade on your own to a regulator that allows a higher flow rate and/or the mask that is specially designed for people with CH. It is very rare for oxygen not to work when the system is set up and used properly.

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