Leaderboard

For now ..... split your Imitrex injections. https://clusterbusters.org/forums/topic/2446-extending-imitrex/\ If I had to suggest one culprit for what's going on now, I'd look to the Imitrex, which famously makes attacks longer and more resistant to treatment, and lengthens cycles. Using less is better. Using none (eventually) is of course ideal. It's very common for pharma things that worked in the past to not work anymore. The "medical" solution is more: higher doses of verap up to 960 and even higher; longer and stronger pred tapers (a leading CH expert recommends 21 days with multiple days at 60mg). As you have said, this might have short-term results but long-term drawbacks. Oxygen doesn't go that way. It works and keeps on working. Same is true of the D3 regimen: https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/ Same is generally true of busting, with some adjustments required by some people. (Click on "New Users - Please Read Here First" in the blue banner near the top of each page.) A "certificate of medical necessity" from your doctor seems to help with insurance approvals. As you might know, many people with CH (probably at least one in five) use welding oxygen, which can be obtained without a prescription. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Try downing an energy shot (for example, 5-Hour Energy) at the first sign of an attack. You might get some aborts from that, which will reduce your Trex usage. (Strong cup of coffee works for some, other kinds of energy drinks, such as Red Bull or V-8 Energy, can also be effective. Despite their small size, energy shots pack the highest caffeine punch. Check your triggers. You never know. https://clusterbusters.org/forums/topic/4568-triggers/

You got that right @BoscoPiko, and it's also the real world experience of some CH'ers here, one of whom described it as something like a "reverse survival instinct" that gabapentin can spur. It is weird indeed, and can be experienced as not having any sort of "I want to kill myself because I can't take it anymore" component, but more like a calm and nonchalant "it would be very right to turn the lights off permanently right now" feeling, with no emotion. That said, I'm one of the few and far between whose CH has benefitted from the 'ol gabby, where it cut the number of attacks per day in a raging high cycle in half for me, which in turn made it possible for me to abort every single attack that did break through, and that was a really big deal. I'd advise anyone on the gab to watch out for the weird thoughts/feelings, be prepared to recognize them as the drug talking, and to fully ignore them.

Here is a copy and paste from a previous discussion about it on here. It includes all of the original regimen plus this: ***We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty. It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3. It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C. You can also add 500 mg.day NAC. I buy the bulk powdered vitamin C in 1Kg bags and stir two level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime. It tastes like unsweetened lemonade. You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free. I'd stay at 2 grams/day on the first four supplements for at least a month. Dealer's choice on tapering further.*****

I would only mention that misprescribing related to CH is very common -- verapamil usually too low to be very helpful; Imitrex much more than people need while triptan pills are almost always too little . . . . Your prednisone prescription (which I understand wasn't actually for CH) might not have been enough for CH. Some people do get relief from a standard pred "dosepak," but the recommendation from CH experts is more like 21 days with four days at the highest level (typically 60 mg).

Get the o2 and read every thread on this site. Ch changes and morphs for about everybody. But the tools are here as is the support.

Sometimes prednisone dosage is related to weight. The actual CH recommendation is 1 mg per 1 kg of body weight, to a maximum of 60mg. 60 kg = about 135 pounds, so you'd be fairly light not to get the full 60mg. One more quick "dosage" thing. If the Red Bull works, that's good. I note that many small energy shots, such as 5-Hour Energy, have a lot more caffeine in them than an 8-ounce Red Bull (roughly twice as much), and can be drunk down more quickly. On the other side of this "dosage" issue, some people get good results from a strong cup of cold coffee along with a taurine pill, and some people prefer energy drinks that are probably healthier than Red Bull or 5-Hour, such as V-8 energy drinks. Wishing you the best that this surgery turns out well!!!

I also include 1,000iu (500 am and 500 pm) of COQ10 which was mentioned by Batch at some point but I can't find the thread at the moment

Hi Luis, Sorry the cluster bunny is back. I don't have much info on gabby other than to say it did not work for me. All it did was make me super sleepy while the beast raged on. You never know though, what doesn't work for one may work for another... I do recall someone on here (I think it was @Bejeeber) mentioning a study that showed an increase in suicidal tendency's not that I think you would have an issue with that especially with just trying it out. By chance have you tried the "Full Monty" D3 reg? I had to switch over from the normal regimen a while back due to allergies and it has really helped.