ThatHurtsMyHead

They can spend billions of dollars to transport oil all over the world, but can't put a pipeline for life giving water from the central US to CA. I guess water doesn't make people as much $. (J - Scratching head)...

CF, O2 + magic truffles / mm and live will be right again. Please be careful with the water. Too much can actually kill you (as odd as that sounds). It causes the brain to swell if you dilute the salt from your blood too much. Welcome to the board. J

Ajax, Spot on brother! I did the same a few times. NEVER again. I'm PF with 1 dose every 2 months. Never again will I try to extend it longer. The beast gets crazy when he's away for so long and is allowed to come back... J

Mostly - over 5 years pain free. Accept a couple of times I didn't take my proper preventative dose. My CH came back and I had to go through the complete busting regimen to get my CH put back in the box. J

I was just looking for something and ran across this. I thought OUCH US was turned over to CB / Bob when they decided to disband? It seems someone else has taken the domain. http://www.ouch-us.org/ Is this right? (It feels wrong)... J

+++ Spiny's post. I'm no doctor, but you might have something else other than CH (there are several headache conditions that are one sided). I've never heard Kpin ever helping a CH attack. (otherwise we'd all be on kpin. ) J

Bobby, I don't mean to be a downer, but I just looked Rizatriptan up. There's warnings all over the place, that it's not to be used for treating CH. "Rizatriptan is used for: Treating migraine headaches with or without aura (eg, flashing lights, wavy lines, dark spots). It should not be used to prevent migraines or to treat cluster headaches." "Do NOT use rizatriptan if: you have certain types of migraine headache (hemiplegic, basilar)" "Before using rizatriptan: Some medical conditions may interact with rizatriptan. if you have a history of other types of headaches (eg, cluster headaches)" I don't doubt it's helping you, but I'd think they found something in the drug trails that it does something to 'us' with CH that's seriously bad, for them to have warnings all over the place not to use for CH. J

surgeonasim, Welcome to the board! Glad to hear you're getting some pain free time with the HBWR seeds Great medicine isn't it ! J

Potter, My friend you're using way too many words. Speaking of potter. Are you going to make it to the conference this year? Haven't seen ya since that wild time in Vegas. (I want to try that baby food jar trick one of these days) J

All, After chatting with Sheri, I'm re-posting her post from another thread. I know several on the board have SSDI and might be able to provide some suggestions. Thank you, J

Don't go TA, your input is valued. J

HazBaz, Isn't it so comforting how the docs want to cut on us... (said with extreme disdain). Glad to hear they have the O2 ready for you, you'll be self sufficient with your own medicine J

Thanks Cassidy and Bob, I've been PF for over 2 years (preventative dosing). My CH just came back 2 weeks ago also. I can say for certain my CH didn't come back because of anything other than something I did (I suspected I shouldn't have done >). I'm going to start a separate thread with the ole, who, what when, where, why and how (of my mess up)... Basically I 'unbusted' myself with a dr scripted drug... grrr (but 100% my own fault). Cassidy, I concur with your assessment that the medicine (mm) does loose potency. I've been preventative dosing with mm obtained fresh 3 years ago (every 60 days for the last 3 years). The MM was cracker dried, put in capsules, with desiccant and stored in a double Ziploc bag in the freezer. I'm pretty sure it's been loosing potency. Each dose seemed a little weaker than the one before. The last year I've been bumping up the dose a little each month. I can definitely tell it's weaker now, even with a 50% higher dose. Interesting note, I'm also getting more anxiety with the 'weak' doses. More on my mess later. Love all, J

Amphs, Sounds like what you're experiencing are what some call 'shadows'. There's a very wide range of descriptions. From a very dull headache, to an awkward feeling, to pain in odd places in, on or around your head. My shadows feel like a CH, but only in the decimal of pain level (like .5). J

Amphs, It seems to be a sadistic pain thing that sorta binds us CH'ers together. CH patterns can change day to day, week to week or even cycle to cycle. Sorry to tell ya that. We all can value a few days of being pain free though. On the sleep cycle thing. You might not be affected by sleep cycle changes, but the majority of us are. Particularly switching between day / night sleep. For those of us on a normal sleep pattern, something as simple as a short nap in the day is a serious no-no. You might want to play it by ear for a bit, but changing to a regular shift might be in your best interest at some point. PFW, J

Bob has links and some information 3 threads below this one titled "Breaking News-Clinical Study on Cluster Headaches". I see this is your first post. Welcome to the board. There's TONS of people with CH and supporters here. Tell us something about you (and your CH). J

Bob, Thanks for the info. As a side note and support for your request to get O2 covered. I can attest that the VA covers O2 for service connected vets that have CH. Sadly, suing the government seems to be about the only corrective course for gov programs running afoul of their intent. Dunno if someone needs to sue medicare / medicaid to get them to change their position? I cringe at saying those words, but I read nearly every day now that some gov entity is suing another gov entity to get something changed. J

Vickle, Not heard of that. But honestly. Anything the doc prescribes would scare me. Make sure you read all the warnings (as I'm sure there's a lot) on that Lyrica. PFW, J

Agreed here as well. No napping EVER... J

So sad to hear. I hope she can detox from the pharma garbage so her heart can heal. J

Mystina, ++++++++ Aetna is the worst...... They're the jerks that decided to stop covering my Oxygen a few years ago. Thankfully I had a backup. Glad to hear the hospital did your mom good. J

Mysti, So glad to hear from you. So sad everything you've been through :'( Sending you and your family well wishes. J

Moemfie, Sorry to hear of your surgery issues. I think the majority on the board here feel the same. Cutting on someone's face, muscle, nerves or brain don't appear to help many at all. So sorry to hear of the issues you've experienced. You seem to be new to the board. Have you tried mushrooms, or the seeds discussed? Sooooooo many here have had great success with either reducing or completely stopping their CH. Maybe start a new thread and Please tell us more about you? PFW, J

1 Yes, definitely 2 Yes, Always (I more often throw prescriptions in the garbage after researching side effects than those I keep and take). 3 No, Never ignore warnings I rarely ever take prescriptions any longer. The garbage the docs gave me over the years for my CH was a REAL wake-up call that doctors don't really know what they're doing. They just know how to write prescriptions with their hand out for money from you AND money from the drug companies. Sad state of affairs the pharmaceutical companies have turned our medical system into. EDIT: I have to make a small edit. Before I was properly diagnosed with CH I took Tylenol by the handful sometimes. I didn't care what it did to my body or killed me, I just wanted the pain to stop. I have no idea why the HUGE amount of acetaminophen didn't damage my liver / kidneys etc, but I guess I got lucky. J

Batch = Rock Star!