CHfather
-
Posts
6,522 -
Joined
-
Last visited
-
Days Won
383
Posts posted by CHfather
-
-
Do the energy shots have Taurine in them?
most of the common ones do. 5-hour energy, yes. 6-hour power -- looks to me like some varieties do, some don't. check the labels.
-
Tony Only just reported that he's had success aborting with licorice root. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1385746613/7#7 As he says, you gotta be kinda careful: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210
-
On this video --
-- starting at about 5:30, there's a potentially valuable suggestion about using the breathing tube with 25 lpm, and some suggestions for breathing strategies. A well-known CH expert also suggests looking toward your feet while you do the O2 (and some people say that helps). -
please read the article about oxygen that tony linked to (you can also find it under the MENU tab on the left side of this page) and get back to your doctor and insist on oxygen. you can also create your own oxygen system using welding oxygen. oxygen is essential for aborting CH attacks. (also, most people consider energy drinks more effective than just coffee for aborting.)
-
Not much to add to Tony's great post . . . just a few additional things:
(Here just reinforcing Tony). Your doctors should have prescribed oxygen. You should insist on it. It's treatment #1 for anyone with CH.
Drinking an energy drink (such as Monster or Redbull), energy shot (such as 5-Hour Energy), or a strong cup of coffee at the first sign of an attack can reduce the severity of an attack or sometimes even abort one.
Some people find that melatonin at bedtime helps. Many start at 9-12 mg. and work up, even as high as 20 mg or more.
The pharmaceutical medication called Imitrex in the US (injectable sumatriptan) helps a lot of people abort attacks. As Tony said, a lot of the prescription meds can have bad side effects with long-term use, but you're not in a position yet to be busting, so at least for now you might try some prescription stuff. Prednisone tapers work well for some people, and verapamil also works for some. (Don't know what you have already tried.)
When Tony describes RC seeds as the "featherweight" form of busting, I don't believe he's describing its effectiveness, but its psychedelic effects. RC seeds are a very effective way to bust cluster cycles -- but they can be taken with very little psychedelic effects. (I have a vague memory, however, that it might be illegal to import RC seeds into Australia. If you're interested, we can check.)
So sorry that you're dealing with this now . . . oxygen plus busting will help a lot in the long run; maybe some of these other things will help soon.
-
Sandy, it's generally believed the RC seeds will lose their potency, no matter how they are kept, after six months or at most a year. Maybe your experience will contradict that belief.
-
>>>I guess DHS will report to the courts and shit will hit the fan I don't think I could survive jail With CH's Maybe I'll be one of the first through the courts. <<<
b'up,
Don't be a hero, please. Job #1 for you is to be safe. If some handful of people don't learn about busting, that's okay; you being under some kind of legal or personal threat is not okay. For heaven's sake, check with a lawyer. I have checked with a bunch of lawyer friends of mine, and the consensus is that while theoretically you could be subject to prosecution under some circumstances, it is very very very unlikely that you will be. Prosecutors are swamped with cases that are actually important and that would not have as sympathetic a defendant as you, and that wouldn't pit family members against each other. They say that very few prosecutors would take on a case like this, and their guess is that even if one did, it'd be settled without jail time. I stress that this is just what I have heard -- you need to find out for yourself -- and don't do anything that might make you more vulnerable.
I tend to agree with Ricardo that maybe this thread ought to be deleted (and I also think that maybe you might want to remove your location from where it appears under your handle here -- I think that will remove it from all your posts).
-
This is terrific -- thanks to all!!!!
-
Maxalt is a triptan (rizatriptan). Triptans can help as abortives, though not as preventives. They work when they're injected; almost never work in oral form. Imitrex is the most common injectable form. (Triptans interfere with busting.)
It seems pretty clear that your neurologist doesn't know much about CH. Maybe you'll want to try a headache center?
Someone just posted at another thread here about how badly topiramate had messed him up. Thought of you -- but now I can't locate it. If busting works for you, it -- plus O2 (and D3 probably can't hurt) -- is the best way to go. No side effects, probably not even any "tripping," if you use RC.
Modified 11/14: Ah, here it is: >>. . . the 200mg of topirimate my neuro had me on daily that turned me into a useless almost drooling bag of bones. (I am down to 100mg daily at the moment) . . . << https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1376797890/2#2
-
Yes, read that O2 material and insist on getting a prescription from your doctor. It will make a big difference.
At the first sign of an attack, some people quickly drink an energy drink or strong cup of coffee. It can significantly lessen the severity of an attack.
Depending on the reliability of your shroom supply, you might consider rivea corymbosa (RC) seeds as an alternative. Legal to purchase and possess, and easy to order, they're quite effective for many people and they have less psychedelic effects than shrooms. I guess many or most people here would tell you that shrooms or LSD are the preferred treatments if you can get them, but as I say, seeds have worked very well for lots of people. If you're interested in this alternative, read this file -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 -- and then get back to us. (In general, you should read the numbered files in the "ClusterBuster Files" section of this board.)
Many people get a lot of preventive benefit from the vitamin D3 protocol, which you can read about here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
 HA! Most folks here would call BS on that (depending on what "a lot" means -- more than none, probably).my neurologist says a lot of folks handle Topirimate just fine
Funny, when I saw your handle I thought of the Anvil Chorus, which was right around 1848. Not a bad accompaniment to a CH documentary.working on my music scores -
Welcome, Anv. It's great that you're getting relief. Those anti-convulsants that you mention (or some of them, at least) are sometimes prescribed for CH, and they can be somewhat effective, although as you say, the side effects can be horrible. Since you're not really asking any questions here, and you're not certain that you have CH, I'll just (a) wonder a little why you might want to wait a few weeks to dose again (I can think of some possible reasons, but I can also think of reasons not to wait that long), and also (
wonder whether you have oxygen to abort your CH attacks. If you have CH and are still getting attacks, oxygen can be very helpful. If you're not familiar with O2 to treat CH attacks, you can read more at the oxygen page under the black and white MENU tab on the left side of the page.Please keep us informed of developments in your situation.
-
Hey, Keith -- good to hear from you, glad you're doing well.
-
I'm going to have him read this thread and make his own decision
Welcome, son! Your mom is a great and tireless advocate for you. That's one heck of a gift, for your birthday and beyond, and there are lots and lots of people here rooting for you and ready to help you.
-
From what I know (not much), CH has nothing to do with sleep apnea. There are many cases of CHers getting sleep apnea equipment and it changes nothing.
Well, there are some cases of CH patients treating sleep apnea and having symptoms reduced (see the citation in my previous post), but sleep apnea in itself can be a bad thing, and probably should be looked into for its own sake, even if treating it doesn't affect CH. In one study, 4 out of 5 people with CH (31 out of 39 randomly selected) were found to also have various degrees of sleep apnea (http://www.ncbi.nlm.nih.gov/pubmed/15186306). In the earlier paper, it says "The high incidence (80.64%) seen in this population suggests the cluster patient should receive a sleep evaluation and perhaps intervention with continuous positive airway pressure (CPAP) or an appropriate dental device." That's why I posted this in response to didgens' question.
-
sleep apnea is relatively common among people with CH.
-
thanks for the info, didg. i've been wondering how he was doing. sounds good.
-
Standard advice is to inject imitrex in the thigh or shoulder. It takes about one minute for all the blood to circulate through your body, so it's hard to see any likely difference in speed of action whether you inject it in your thigh or your shoulder (could be that blood from the leg gets to the brain a little bit faster).
-
yes, i'm sure he's very glad you're there while you two figure it out. most folks don't think with perfect clarity during an attack.
at 20-plus minutes per abort (at least while you figure it out), you'll run through the small tank in just a few attacks. you'll need the large one, i suspect. two of you should be able to carry it fine, i think -- three of you, for sure.
imitrex was near-poison for my daughter -- but as you know, it's very valuable for many people. i am hoping that in these early stages, the O2 will be good enough.
(i'm assuming you're not planning in busting now (??)). if i was his doc, i'd consider verapamil as a preventive. but i'm not -- and his actual doc is 100 times smarter and 1000 times more experienced than me.
maybe put that redbull by his bed, so he can try drinking it on the way to the O2?
-
ÂI fear a little his falling asleep with the mask on toohe shouldn't have the mask strapped on. cut the strap. he should hold the mask firmly to his face when inhaling, and remove it when exhaling. if there are open holes in the mask (a circle of small open holes on one or both sides), they should be blocked, with tape or with his thumb, so no room air gets in as he inhales. if there are one or two circular gaskets (almost always white or green, i think) that allow him to exhale through the mask but keep room air out when he is inhaling, then he might hold the mask on while exhaling, too.
sadly (as you say), but also happily, he will almost certainly come to see "that thing" as a very good friend.
how much O2 do you have? at least two cylinders, i hope.
Â
-
didg, if the oxygen helped him, that would strongly suggest to me that it's CH, not his tooth/teeth, causing the problem.
wholly, and strongly, agree with jeebs about where the O2 should be. (maybe he smokes and you're concerned about the O2 being in the same room? if so, we can discuss.)  not really so sure about having to breathe room air every five minutes. most (i think) stick with the pure O2 for as long as it takes to abort (maybe after 20 minutes at 15 lpm, some room air . . . but i'm betting that at 15 lpm, with good breathing strategy (which he will develop), he'll be knocking them out in about 10 minutes.) the main thing is to get as much O2 as possible into those lungs, and as much room air out, as quickly as possible. remember/remind him that he should tilt his head down as he breathes, as kudrow has advised.Â
as a parent, i tended to hover, wishing i could help, offering things (ice, neck rub . . . sympathy). eventually i was told that my own distress wasn't really helping things, so i waited to be asked (which came to mean that the attacks would most often get aborted quickly while i slept -- hard as that might be for you to imagine right now).Â
-
Finally set up and tested the demand valve I bought from the eBay site at the top of this thread. Worked great. I suppose that's no assurance that the other ones will -- there are still 6 available -- or that it will continue to do so, but I see that the seller has 100% satisfaction ratings at eBay. The mask is really comfortable, too.
-
didg -- Kudrow didn't put him on anything preventive???
-
Sweet,
The company that's providing you with the machine (a "concentrator") should also be able and willing to give you tanks and a regulator that will go to at least 15 lpm. It's hard to imagine why you wouldn't want tanks--the only two reasons I can think of are (1) maybe tanks would cost more and/or (2) tanks run out and have to be refilled, whereas the concentrator just keeps going. But even at 12 lpm (if your concentrator goes that high), you're not getting the same amount of O2 as you get from a tank, because the O2 from a tank is pretty much 100% O2, while the O2 made by the concentrator has some room air mixed in. Plus, concentrators are typically pretty loud, which can be an extra irritation when you're dealing with an attack. Not to mention that the concentrator is not portable. You can take a small tank in your car, to where you work, or other places. Â
In short -- heck, yes, you want a tank. Like Jeebs said, you'll abort stronger attacks more successfully (and other attacks considerably faster). You want multiple tanks, in fact--at least one big ("M") tank and one smaller ("E") tank.Â
You want tanks, as Jeebs likes to say, "toot sweet," Sweet.
Have you tried an energy drink or energy shot (or at least a strong cup of coffee) to knock back an attack? Drink it at the first sign.
As for BOL, not quite sure what you're looking for. No clinical trials underway right now. We're told that maybe there might be some pretty soon (but we've been told that a lot). We're also told that if there aren't any within the next six months or so, there might not be any for a long time. The company with the BOL patent is Entheogen (www.entheogencorp.com). If you go there and sign up, you'll be informed (we are told) of any trials that get started (pay no attention to what it says on the home page about BOL "undergoing clinical trials"). Or if you just check back here regularly, I'm sure CB will be among the first to know if trials get started. If you were looking for info about past trials, there's a link on the "Exploration" page at the Entheogen website.
-
Some discussion of new approaches in treating migraine and CH, and possible new, faster delivery systems for meds, with fewer side effects.
A couple of pages from the article are here: http://link.springer.com/article/10.1007%2Fs40263-013-0090-x#page-1
The abstract says:
There remains a significant need for new medications and devices that can provide effective, rapid, and sustained pain relief without adverse effects or recurrence. Several new acute and preventive therapies for the treatment of migraine and cluster headaches have shown promise and are currently under investigation. This article covers innovative delivery mechanisms, calcitonin gene-related peptide receptor antagonists, antibodies to calcitonin gene-related peptide and its receptor, 5-HT1F receptor agonists, transient receptor potential vanilloid receptor modulators, orexin receptor antagonists, glial cell modulators, and neurostimulation.
There's some discussion of this over at ch.com (I'm sorry if there also has been here, and I have missed it): http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1373679109
Â
1st visit with Neuro
in General Board
Posted
Happy for you, Vickle! Hoping for great results.