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hello all, i want to introduce my dear friend @spikeinthehead. he just registered yesterday; i've sent him the url to the readme banner, ahem, @CHfather. i know he'll develop his own connections, but i want to specifically introduce @Brain on fire, @spiny @Freud @dmlonghorn @ThatHurtsMyHead. Also, @Batch, perhaps you could pm him with the link to the D-3 regimen. thank you all! lux

Hey Signals, Welcome to Clusterbusters. We know what you've been going through so you've come to the right place. Regarding travel and taking the vitamin D3 regimen, I pack a ziplock bag with enough vitamin D3 and cofactors to last the duration of my travels plus enough for a few more days in case of delays and keep it in my carry on bag. In the 8 + years since I developed this regimen, I've never had any problems with TSA or customs during international travel. I switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules. They make the loading schedule a snap at one capsule a day. I've been taking one D3-50 a week as my maintenance dose and this has been adequate to kept me CH pain free. At one D3-50 a week the daily cost is ~3 cents/day where the oil-based liquid softgels cost 6 cents per 5000 IU or 12 cents/day. Check your PM InBox, I've sent some additional info. Take care and please keep us posted. V/R, Batch

Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest. Hiya Signal...glad ya found us!...post away, sometimes just saying this stuff is better than any med...and we REALLY get it... .....I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition......Maybe I'm wrong, but it always felt like it was worth looking into. ...I think it's a valid concern....and not just for CH....we are all exposed to all kinds (and ever increasing) forms of electronic "waves"... and someday they may look back on us with derision and amusement at our cavalier ignorance...like we do for the Roman's drinking out of lead wine glasses. Worked for a company that used a 50k watt microwave to thaw fish blocks for processing...BEAUTIFUL stainless machine...30' long and very efficient. The company rep used to regale us with stories of microwave history....like that the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"...can you say cooked liver? He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. ...some folks can use the pills as a prevent if they know their cycle well and get the timing figured out....but they indeed be worthless to most as an abortive. A standard treatment would be a prednisone (or methylprednisolone IV) and/or pill taper to break a cycle while ramping up verapamil dosage (10-14 days). Sweet spot reported to be 480 mg/dy of immediate release type (lesser, but not zero, reported success with sustained release). Some go much higher...I was over 1000 mg/dy in high cycle. Heart issue side effects potential MUST be monitored. Know not the ramifications of mixing atenolol (Tenormin) and verap. One of the first meds I was ever prescribed for CH was atenolol...didn't do squat. Don't waste your time on Inderal (propranolol)..some success with migraine but not CH.... ...many find that the 6 mg suma injections are too big a hammer and 'hack" the injectors to get 2-3 mg injects instead... which works just fine with fewer side effects and a lesser chance of rebounds. vials of the drug are sometimes available (ask your pharmacist) where you can use exactly the amount that works (using insulin needles)... ...my abort of last resort is Zomig nasal spray (5 mg)....for me no side effects, no rebounds, and an 18 hr hit free window....added bonus of insurance would approve suma and Zomig scripts at same time (tho not enough of either)....caution to NEVER mix triptans within less than 24 hrs.... I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent. ...same hard earned aha moment for me....when I stopped screaming, cursing, thrashing, hitting myself and anything close, and working myself into a frenzy I was able to cope much better. pain was the same...my reaction to it made a HUGE difference...adrenaline at the WRONG time is not your friend..... I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. do whatever you need to do to try the D3 regimen...it may make everything else unnecessary! haven't heard of TSA concern with the necessary pills...but I used to carry all my scripts.... and photo copy of the vitamin bottles with pills shown would be a good idea.... I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. well...your doc sounds like he/she knows what they are doing so I am surprised they didn't INSIST on OXYGEN....tis the accepted standard of care first line abortive. O2 has saved many a clusterheads sanity, maybe life. not sure what you experienced at the O2 shop... but you do need a script...and if your insurance doesn't cover...you can offer to self pay. if that doesn't work welding oxygen (same as medical) is your next option... ....I used to travel in cycle...using Lincare travel service I was able to arrange for oxygen tanks at my hotel...same service, same price. you probably already know that the airlines won't allow you to board O2 tanks.... I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day. ...see previous comments re hacks and vials (i could get 15 injects out of the 5 vials)...it IS a powerful med not to be trifled with...especially as you age.... Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail. ...if your doc has an advocates heart (and a healthy disdain for insurance droids) have them write a 'letter of medical necessity" describing your "intractable' cluster headaches and the need for "X" number of vials/dose packs....denying you the scripts your doctor has prescribed without seeing and evaluating you is called practicing without a license....most docs I know are a little more than touchy about being questioned on diagnosis or treatment... So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. Stockpiling!!!..... best jonathan

Never heard of anyone in US having a problem getting a regulator. No prescription needed. Mixed experiences regarding demand valves from medical suppliers -- some seem to require a prescription; others don't seem to. I don't know why. In other venues, such as EBay, there seem to be no prescriptions required. Just a couple of comments on this. Demand valve is nice, but you don't need it to accomplish those purposes. And they're expensive, particularly since you have to have the regulators (with DISS fittings) in any event. If you have a high-flow regulator (25 or above), or any kind of welding regulator, you will almost certainly have no issue with waiting for the bag to fill, unless you have unusually high lung capacity. (As you have noted, you'll need a CGA870 for the smaller medical tanks and a CGA540 for the welding tanks.) And (I still could be corrected on this) I don't think a DV saves any significant oxygen, since each time you inhale using the DV, you are inhaling roughly the same amount you would have inhaled from a full bag.

This is interesting and valuable. Thank you. But I have three words for you. Oxygen, oxygen, oxygen. It's faster than your pills are working, better for you, less guesswork involved, and no need for the other strategies you describe. And a few more thoughts: D3 regimen. Energy shots. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's rare for "dark and quiet room" to be an option for someone experiencing a CH attack, so you are fortunate in that way.

I disagree. In my experience triptans will most definitely give me rebounds IF I take it numerous days in a row, but there have been plenty of times (and after close to 20 years of using triptans I can say PLENTY of times pretty confidently) that I have had a cluster, taken sumatriptan and did not have a rebound headache or increase in the severity of attacks. And yes, more than once I thought the same thing, stopped Sumatriptan for 6 months at a time and found no difference. Maybe this reaction is happening with you Denny, but I suspect it might be an individual sensitivity to triptans. Again, I disagree. I fully believe that taking opiates too many days in a row will give you rebounds, but I have had too many times where I ended up in the ER and the only thing that worked was opiates. The next day I did not get hit, and my attacks in general did not actually get worse in any way. I think this is important info because I think as a last ditch effort the opiates are very useful. If you end up in the ER, you are out of options and they offer you a shot of morphine should you turn it down because of the possibility of a rebound headache the next day? In my experience and opinion, as long as you have not been taking opiates much you will do yourself very little harm with an emergency shot of opiates. I would say that somewhere around 95% of the time that I take sumatriptan it gets rid of the cluster and does not in any way "rock me so bad" when it wears off. Sometimes the triptan does not work, I consider this to be a bad cluster and not sumatriptan rocking me. Triptans are not really released from any sort of receptor, they do trigger certain receptors to do certain things, but they are not actually released. The k receptor is a hallucinogenic opiate receptor and I have never heard of it being related to sumatripan or clusters. Do you have any info showing otherwise? In my experience this is not always true. I have taken sumatriptan, then less than 48 hours busted with psilocybin and it worked. I have done this more times than I can count. When I get to the point where I am taking sumatriptan for more than 2 or 3 days straight it seems to interfere with my bust and I need to make sure I get a good break from it. In my opinion, none of these statements are very helpful. You have your situation and other people have theirs. You can not guarantee any sort of reaction to anyone about anything. Telling people "stop triptans now" because they haven't worked well for you seems to assume that you know other peoples situation enough that you can tell them what meds they should just "Stop". That seems kinda arrogant to me. You can not say in any sort of surety that "triptans will set you up for disaster and a continuous headache cycle". Maybe you can say that about yourself, but there are a LOT of people that do not have this effect at all. It has been pointed out over and over on this site that we should all take as little sumatriptan as possible. That IS helpful. As far as "You are fooling yourself if you think they are helping" Again not very helpful and most definitely arrogant. You don't usually convince people of the merit of your ideas by calling them foolish. My bet is that if you do some serious research you are going to find very different ideas than the ones you have come up with. Maybe I am missing something though. I responded to that post earlier with a whole bunch of questions because I wasn't understanding what you were saying and I have to admit, after you answered me I was even more confused. Between the k receptors that are somehow receptors and molecules, the clusters being caused by clusters, the strange oxygen info, I could go on and on---it just doesn't seem to have much basis on any sort of factual evidence. The idea alone of K being a both a molecule and a receptor makes very little sense from what we know of biology, chemistry and science. Molecules bind to receptors because the molecule fits into the receptor just like a key in a lock. From everything we know, If the molecule and the receptor were the same it just wouldn't work--that would be like trying to fit a lock in a lock, instead of a key in a lock. I would research more about the receptors that get triggered by sumatripan and the receptors that are triggered by hallucinogens and look for correlations. -Ricardo