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Newly diagnosed with CH... what to expect?


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Hello everyone,

My name is Richard, I'm 25 years old and I have been having Cluster Headaches since summer of 2014. It is only recently however that I've had the official diagnostic. Before, my doc thought they were just really severe migraine episodes. During those 4 years, I've tried all sorts of meds including verapamil, rizatriptan, sumatriptan (nasal spray), cambia, inderal, and I've tried other approaches such as massage therapy, chiropractic, naturopathy and acupuncture.

As you can imagine, I've been reading a lot recently about CH and to be honest, I'm afraid. Just the fact that people refer to this condition as "Suicide Headaches" is scary in its own. When it first started, I would have 1 or 2 headache everyday for 2-3 weeks once a year. Now, I'm having 2-3 a day for 3-4 weeks once a year.

I'm going back to my doctor so I can get (hopefully) referred to a specialist, but until then, I'd like to know from you guys, what can I expect? Is this going to get worse? What did you try, and what works for you?

Thank you, I appreciate you taking the time to share!


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Richard.  The course of CH is unpredictable.  Some people have long remissions, and some get "worse."  However, with proper treatment, the "worse" can be managed so it's certainly not nearly as bad as what you've been going through -- and there is significant hope for effective preventives on the medical horizon.

There are two categories of treatments, preventives and abortives. What works as an abortive is, first and foremost, oxygen.  Effective; no side effects. You want a prescription for high-flow O2 (at least 15 liters per minute) with a non-rebreather mask.  Oxygen in cylinders, not from a concentrator.  Sumatriptan virtually always works as an abortive. If nasal spray didn't work for you, injections almost certainly will.  Significant side effects, but it does stop an attack.

As a preventive, I'm going to say that the vitamin D3 regimen is the best way to go. Good for you as well as being effective.  Read about it in the ClusterBuster Files section. Verapamil can be effective, but many people need dosages that are higher than what most doctors know to prescribe: up to 960 mg/day.  This level has to be gradually worked up to.

There are a lot of other things that will help you, such as rapidly drinking an energy shot such as 5-Hour Energy at the first sign of an attack.  Read around more (I know it's a pain, but you'll learn a lot) and you'll see other things that help (ice water, melatonin, Benadryl, ...).  But from a doctor, what you want are an O2 prescription, verapamil, and sumatriptan/Imitrex.  You might not use the verap and the trex (and the trex is frightfully expensive), but it's good to have the scripts.

This site was founded by people who discovered that psychedelic substances, often taken at a sub-psychedelic level, will very often end cycles and might prevent future cycles.  You can read more about that in the numbered files in the ClusterBuster Files section.

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Hi Richard,

as CHFather said, there's no way to tell if it gets worse or better in its own; it's different for everyone.  The good news is, you have a diagnosis which means you are on the path to proper treatment!

CHFather summed up all the various approaches perfectly.  

You ask what works for us, so, for myself, I have successfully "Busted" a normal 6 - 8 week headache cycle in three weeks.  That means I took psychedelic substances using the ClusterBuster methods and my headaches went away.  It is not like popping a Tylenol; there are specific rules to follow that play a significant role in how effective it is.  Please read up or ask questions (or both!) before trying this method.   

Furthermore, I take the Vitamin D regimen per Batch's instructions as a preventative. The only difference is that I take a regular dose of 20,000 ius of Vitamin D a day (double Batch's recommendation). I'm about six and a half feet tall, so I need the extra boost to be on par with my size.  

I have an O2 tank I'm going to send back to the oxygen company soon, since my headaches have stopped.  I also have oral and subcutaneous (shots) Imitrex.   Imitrex works wonders on a headache when used properly, but I must caution you: I get rebound headaches when I use it and others have reported the same.  I will only take Imitrex if it is a true emergency or if, for example, I'm in the middle of commuting home and can't pull over or last until I get home.  

I have also used the ice water/ 5 hour energy method referenced by CHFather.  It's not a guarantee, but it has worked before.  

Finally, I'm big on keeping a headache diary.  The collected data helps to figure out what works, what doesn't, and to keep a cool head (pun unintended) when things are at their worst.  

I'm sorry this is happening to you; it sucks.  But there are people here to talk to, and many different strategies for dealing with this thing. Good luck!

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