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At least the doctor he likes isn't crazy: the prescriptions are sensible. During a cycle, many people need as much as 960mg of verapamil, and I think -- spiny, please correct me if I'm wrong -- that it's generally been observed that the short-acting verapamil is more effective than the extended release. Or it's the other way around! spiny or someone else will clarify. We get that he's doing what he can, and it is important to know that it's widely believed that extensive use of Imitrex will make subsequent hits worse and more frequent, and make cycles longer. Oxygen is the way to beat that -- abort with O2 and you need a lot less trex. But we also get the reluctance to get hopes up and then be disappointed. That's one of the cruelest things that CH does to many, many people. As spiny says, attending the conference could be a great thing for him (and you). Here's a final refrain that you might have read here. If O2, properly tried, doesn't work, then it's possible that he doesn't have CH. Really, "properly tried" is nothing fancy. If he had tanks, a regulator that goes up to 15lpm (or maybe even 12 lpm), and a non-rebreather mask, and there was nothing functionally wrong with the system, in my opinion he should have felt some relief from O2. So you do want, I think, to consider the possibility that he has a CH "lookalike," most likely some form of hemicrania. We've had a few people here who were diagnosed with CH who actually had hemicrania continua (HC). The good thing about that is that it's treatable with a medication called indomethacin. Maybe you might look into HC and it might be something to be suggested to his doctor.

Yo CHf...best to you brother... Re verapamil....I was ona the upper limit guys...sometimes over 1000 mg/dy (480 mg/dy seems to be the sweet spot for many) . Extended release...for ME...was worthless no matter the dose. Got it once by accident and the panic that ensued (IT DOESN'T WORK ANY MORE!!!!!) is still SEARED in my brain. At least experiment. I had some success TIMING the split doses to just prior to anticipated hit times! Re O2....mixed feelings. At one point I was poor and had crummy insurance. Had to buy O2 out of pocket...$10 per e tank...which was quite reasonable...but still. This gonna cause eyerolls and guffaws... but I used 4-5 LPM and successfully (aborted about 60-70%) because I had to conserve. Wrong mask...wrong technique... Later, found success with better technique, 15 LPM and the right mask...Other times 20-25 didna work. see O2 thread at ch.com for near everything ya need to know...AND get the right mask...available from the store there. My gut feel is that O2 is not 100% effective no matter what...BUT proper setup, mask, and technique are CRITICAL before giving up........... Never liked Imitrex....made me feel "ooky"...found my favorite rescue med to be Zomig 5 mg nasal spray (99% effective...no rebounds). Damned expensive and damn insurance companies always made obtaining a trial.... Best Jon

If possible, go to the Convention in Chicago!! They will stress O2 and teach him how to use it among many other things!!! It is in September for a weekend. You will learn a lot too. Many supporters attend with their CHer. Info is on one of the other boards on the main page. Also on the opening home page where you start when you sign in. It would be great for both of you.

CHFather, thank you--I always appreciate reading your responses on these boards. I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights. He's open to busting, and if I can get him to read the files I'd consider that a huge win. I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can. Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again. However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can. I appreciate this site and your support. It's really helping at this particular low time.

Ok, thanks for the suggestion Spiny, I really appreciate it. Hopefully the doctor can help me. He usually boosts my spirits. I don't think the topamax is doing much anymore, had two bad hits today already. Ugh, so tired...

Interesting perspective Jon, thanks. Agreed with Spiny on how common it is for episodics to fear they're going chronic, often when we're really not. Also, cycles can elongate for some of us episodics as the years with CH go by. Maybe it can ease the mind a little to know that this isn't so unusual, and doesn't necessarily indicate we're on the verge of going chronic.

My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable. Best Jon

Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual. I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not. Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?