CHfather
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Posts posted by CHfather
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Jilly wrote: >>Seeing the doc on Thursday & pushing (harder) for a script<<
Jilly, I wrote you a long message a while earlier, and then my ISP messed up and I lost it. So I'll give you the shorter version here. This is based on the arduous experience my daughter and I had trying to get a proper O2 setup. Just some things to consider.
1. Maybe have someone come with you to the doc? We all have had those times when we really didn't get satisfactory service from a physician and later regretted it. Especially if you're already feeling crummy, someone with you as an advocate can help a lot. (My daughter was in the middle of a severe CH attack at the very time of her appointment, throwing up into the doc's wastebasket and crying from the pain. Doc still treated her like she had a hangnail and she (the doc) had more important patients to see.)
2. We found that handing my daughter's doc those articles about O2 that I linked to in your earlier thread seemed to make a difference. The doc became a little huffy when I pushed them at her, but I think it showed her that we were serious and knew what we were talking about, and she (the doc) wasn't going to get away with half-assing this.
3. It turned out that we basically ended up dictating the prescription to the doc. So it's good if you know exactly what you want: several big tanks, maybe a smaller one or two for travel/office (as I mentioned in an earlier post); at least 15 lpm regulator, non-rebreather mask. OTHERS WITH MORE EXPERTISE, please help here with a full precise list of what Jilly should be demanding. I know many feel you should get longer tubing so you can pace if you want to and a "bubbler" (humidifier?) to make the O2 less harsh as you inhale it. My daughter doesn't have either of those things, so some are more optional than others.
4. For my daughter -- who as I mentioned, is about your age -- a "standard" non-rebreather mask was too big, leaving spaces where room air got in. Her face is fairly small. Honestly, I don't know whether masks come in different sizes, because a C'buster hero had given me a different kind of apparatus to try (more of a tube than a mask) and it turned out that worked great (and was preferable to the mask for my daughter because it's less confining). But you should check on this with someone who knows, presumably at your O2 supplier (I think many have respiratory therapists on staff).
5. We asked my daughter's doc to please fax in the prescription right away. She said she would. She didn't. We had a hard copy of the prescription that enabled us to call the O2 supplier, read the items, and get the ball started anyway. (Can you tell how very, very much I dislike my daughter's doctor? But (like you, I think) it was where she could get an appointment quickly.)
6. My daughter's O2 supplier, in a major metropolitan area, had practically none of the equipment my daughter needed. We had to push hard to get them to hunt it down and get it to her. I also faxed them the O2 articles, because they probably never had dealt with anyone with CH before, and we needed them to understand why this was urgent, and why she wasn't like their other patients, most of whom I imagine are folks with COPD.)
7. Don't assume that the regulator your father got you will fit on the tanks you get. There are two kinds of regulators. Just saying, insist that your supplier provide a regulator -- don't assume you already have one.
All this sounds -- and seems -- ridiculous. How can suppliers be so ill-prepared? But ours was in every way, which leads me to
8. They guy who finally delivered my daughter's equipment brought the tanks into her apartment, handed me the regulator in a plastic bag, and, after telling me that all I needed to do was thread the regulator on, he left. When I screwed the regulator on and tightened it by hand, air leaked out all over the place. When I called the supplier, I was told I needed a special wrench to fully tighten the regulator (just a big wrench, but one my daughter didn't have). The delivery guy was supposed to have given me one, but he hadn't. That required a trip to a hardware store before the O2 was really set up.
So, when they deliver your tanks, insist that they set them up, make sure they work, show you everything about using them, and let you try it. It's not complicated, but at least for me when I'm messing with equipment like that for the first time, I want to be sure I'm using it right. (And yet I still didn't insist that the delivery guy set it up and show me!)
I hope you don't mind all this, and I hope your experience is much smoother. (Thank goodness this is the "shorter" version, eh?)
Jerry
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Jilly, I believe the O2 is very likely to change things very substantially for you -- giving you relief and showing you that it can be done. Some "breathing room," so to speak.
I don't know all the technicalities of this, but it seems you will want a tank/regulator/mask for work in addition to whatever you're getting for home. Even if you have a typical nighttime pattern, you might find that shifting, and including some daytime incidents, as you bust or detox or whatever you decide to do. Others will please correct me if I'm wrong--I'm just speaking from my daughter's experience.
The other thing I will say about her experience is that after night after night of misery, she literally starting laughing like crazy the first time she used O2, because the effects were so amazing. (No, she wasn't taking shrooms at the same time--this was just laughter of relief and joy.)
It's all gonna get a lot better for you soon, I believe.
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Thanks, BobB and FG. I had been discouraged reading some of the ONS results posted here at the site, but maybe there's long-term hope with this procedure. I listened to Dr. Goadsby talking about this procedure a while back (at http://www.reachmd.com/xmsegment.aspx?sid=4280). I seem to remember that it was there, or somewhere else, that he was saying that it's not even necessary to place the stimulation very close to the nerve: the mechanism of relief is somewhat mysterious. I'd rather have BOL or its ilk available, but it seems to me that any promising treatment gives hope.
Jerry
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Would it make any sense to announce this at the general board? (Not telling you how to run this great site, of course -- just saying that if I hadn't already intended to make a donation I wouldn't have seen this, but there might be some folks who would donate, even if they hadn't been intending to, if they realized their money would be doubled.)
Jerry
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I'm pretty sure the ones I got from www.psychoactiveherbs.com worked.
Jerry
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What they said. Or, WHAT WHAT!!! You are amazing!
Jerry
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BTW, my daughter is just about the same age you are. My heart goes out to you.
Jerry
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Jilly, I was looking up headache specialists in Philly when I accidentally posted the above. Here's a place that lists three names: http://www.healthcentral.com/migraine/headache-specialists/pennsylvania.html
Might be a place to start. It says "Migraine and Headache Specialists," so I'd call to find out which have CH experience, and maybe even which will prescribe oxygen.
Jerry
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Jilly, you will get amazing help, support, and understanding here. I'm new, and it's my daughter who has the CH, but this place has changed both of our lives in a pretty short time.
Bejeeber said it so well: >>Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists<< Here are two articles about high-flow O2 from serious medical journals that you can print out and show to him/her, if that would create a response of helpfulness:
Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full.pdf+html
Headache journal: http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE
I've also heard very good things about Jefferson -- but unless you're lucky, it can take a while before they (or any headache clinic) can get you in, so maybe your current doc is the best place to start.
You'll find many experiences similar to yours, including my daughter's: docs who just don't get it. You'd think that in dealing with such a painful condition they'd care, maybe read a little, maybe extend themselves a little, but most don't. So you need to educate them and fight for yourself. It took weeks for my daughter and I to get through the seemingly-simple process of getting a proper O2 prescription (high flow, big tanks, non-rebreather mask) and then getting the O2 supplier to actually supply what was needed. (As has been noted here, once you get the tanks, you can buy the rest of what you need online, for example at eBay.)
Slamming RedBull has helped my kid when she catches an attack early (though it doesn't help everyone), and so far the oxygen is like a miracle.
She's busting with RC seeds (you should also read the "ClusterBuster files" at the "Forum Jump" at the lower right corner of this page), which also is working quite wonderfully. Because all the meds they gave her were so awful, she was just enduring her two-and-three-hour ordeals every night . . . the good part of that was that she didn't have to detox for the required five days before starting. Just saying . . . I have seen first-hand, night after night, how terrible a CH attack is, and I think detoxing can be worth it, despite the horror.
Also, here's a document from a Yale Medical School professor about the effectiveness of busting with seeds (he's talking about HBWR seeds, but the mechanism is the same for RC seeds, and they seem to be simpler to use): http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf
ASK your questions. You'll get answers. The people here are, as I keep saying, amazing.
Jerry
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Ron, it's Dr. Sewell's blog. I don't think he's posted much there in a while. www.clusterattack.com
Jerry
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I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings.
At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way?
(Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com Are they the right ones to contact with offers to help???)
At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero.
But if you donÂ’t care about cluster headache research, why should we?<<<
Of course, many here, including my daughter, have found relief, thank God. But there's so much more to do. I'm ready, willing, and kind of able.
Jerry
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Thanks, as always, to you all.
Takinit, I'm an old guy, too, and a sip of caffeine in the morning will keep me up all night, but actually, with my daughter, she falls asleep right after the RedBull/aborted attack! I suspect that's from being so wired while she waits for the demon to arrive, and so relieved when it's gone.
(I've posted more about her at the "Share Your Busting Stories" forum.)
Blessings to all,
Jerry
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So today we FINALLY get my daughter's oxygen hooked up!
Lately, she has been finding that if she stays up all night waiting for the CH beast to appear, she can pretty much abort an attack as soon as it starts with an 8 oz. RedBull.
Since that's often at something like 4 am, she'd like to be able to go to sleep at a more normal time with some confidence that if she wakes up with a more advanced CH she'll be able to knock it back.
So, my question, finally: Should she slam a RedBull immediately upon waking up and then hit the O2? Is there any danger in that (aside from the one-minute delay in getting to the O2)? I am SO afraid that for who-knows-what reason the oxygen might not work for her, and then she'll be left with a full-blown 2-or-3-hour thing that the RedBull might have cut back or even stopped.
If you're willing to read farther . . . She had her second RC dose on Monday. She's definitely not CH-free obviously, but is it possible that her busting is making the attacks more susceptible to things like RedBull and O2? (In which case, for example, maybe a RedBull will abort or diminish the severity of her attack even if she drinks it after the attack's underway.) (I'm going to post more, and more questions, about her busting experience later.)
As always, THANK YOU. Don't know what I -- and we -- would do without you all.
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My daughter and I are of different views about this. She likes her drink now and then, and she insists that white wine or scotch are not "triggers" because she doesn't get CH attacks immediately or soon after imbibing. I say that I notice a difference in the severity of her night-time attacks when she's had a drink or two in the evening or later. (And I have read in so many places that alcohol is just plan bad during your cycle.)
Can you inform me about this? I read the thread about triggers (alcohol, alcohol, alcohol), but by "trigger" do you mean that an attack follows more or less immediately, or just that it will catch up with you sometime? Since my daughter's attacks almost always occur at night, I'm figuring that alcohol just "triggers" them more severely then, but that it does affect her.
She's not a heavy drinker, but as I say she does like one or two (or, sometimes, three) a day, and she enjoys them and they help her relax. I hate to insist on her losing this pleasure if I'm wrong.
As always, thanks.
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I learned something else from that golf experience, which that only about one person in a hundred actually gives a crap about your (one's) pain experience. Sometimes my answer to the "Why so calm?" question goes more like "Well, there was a time in my life when, for about a year and a half, I couldn't walk more than very, very short distances or sit down at all. So I'm just happy to be out here walking in the sunshine . . ." You'd think that might be interesting to people, but by far the two most typical responses are (1) "Oh." and (2) "I once had a hangnail that really hurt." Of course, C'heads and those who love them already know all this, having heard the "Sometimes I get bad headaches too" or "My friend cures her migraines by eating geranium seeds"-type stories way too often. I actually think this is basically true of 99 percent of doctors, too -- they have no freakin' idea about real pain; it's just a business to them.
I think fairly often about how much better the world would be if everyone actually had to experience an episode of a variety of intense kinds of pain just once in their lives: a CH attack, some AVN, a little pancreatitis, a war wound . . .
But here . . . everyone understands, and that really changes everything.
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Hi Hopeful, I'm quite new here myself but I already consider it a home--and a godsend.
This week I've been sitting up much of the night with my daughter, in her thirties, as she endures some nasty CH assaults. I massage her back and her neck, hold the ice gently on or near her temple where the pain is worst, distract her when she's ready to try to think about something else besides the pain, pace with her . . . and of course it's agonizing for a parent, but thank heaven you are there for your son. We don't yet have a proper oxygen setup here, but we will soon, and I'm hoping that will work as well for her as it does for so many others. And we're doing other things recommended here. Hopeful is the right attitude, because you WILL find something that works. The good people here won't let you down or leave your side until you do.
Your son will reach daylight in terms of his own suffering, no question about it, one way or another. If it's not through things recommended here, it will be from another kind of medical breakthrough. Brain imaging is becoming more and more effective, for example, and the mechanism of this darn affliction will be found and made treatable. Or maybe it'll be botox, just authorized by the FDA for use on headaches and shown to be effective in some cluster sufferers. There WILL be something.
I'd like to add something that's just a personal observation. In my own life I have been through some very extended periods of very extreme pain. Now my daughter is going through worse pain, though not as constant or as seemingly unending as mine was. Neither of us would want this or volunteer for it, but there is no question it has made both of us better people, much more capable of empathy for others who are suffering in any way, physically or emotionally or both. You only have to read around this board to see that quality in practically everyone here. I know I cry with the people here who are suffering, and celebrate with those who are busting free. I would also say that both my daughter and I appreciate pain-free life (or even limited-pain life) more than most people do. I play golf now, after many years when I couldn't walk from the living room to the kitchen without stopping along the way to recover from the pain. I'll be out on the course with guys who are cursing and complaining and miserable because they hit a bad shot or two. They sometimes ask me why I'm so calm, and I answer something like "Because I am walking outside on a beautiful day, and I'm so grateful for that. What do I care what number I'm going to write down on a piece of paper after this hole is over?" My daughter frequently remarks to me about how much more she appreciates life's blessings now.
So again, I'm not looking for fake silver linings, but stating what I believe to be facts. First, that your son will get the help he needs to at least manage this thing, or to completely beat it. And second that he will be a better person for it in the end, in ways that will make every single day of the long rest of his life (his life expectancy now is well over a hundred years, thanks to medical science) richer and brighter and better. Forgive me for the speech, but it's what I think.
Jerry
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I have read here that at least sometimes after starting busting with LSA, people will get "post-dose hits" (which I think were also called "slapbacks" (?) in another thread), and these hits can be quite bad. Four questions:
1. Is this so common that it should be assumed that early in the LSA process things are very likely to get worse before they get better?
2. Does this same thing happen with psilo?
3. If you were early in an LSA-based busting process and then you were able to get psilo, would you switch from seeds to psilo?
4. If you did switch, would you have to wait five days after your last seed dosing before starting the psilo?
My own instinct would be to stick with the seeds to be sure they've had a fair test, since it seems some things work for some people and some for others. But maybe if psilo is so much better, and if there's no post-dose hit/slapback from psilo, it would make sense to just switch to psilo and come back to seeds later if the psilo doesn't help??????
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How wonderful to read this, Zed!!!
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weatherman, you wrote: >>Will have to go to the Boardwalk in Santa Cruz, CA (just over the hill from me) and get some chocolate covered bacon<<
I lived in Santa Cruz until about 18 months ago. I'm pretty sure I was the only person there who looked like he regularly ate chocolate-covered bacon. And of course you're right -- outside the boardwalk, probably the closest you could get in SC would be carob-covered tofu (organic, of course).
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Thanks, Takenit. Not better yet, but thanks to this site we have information, hope, and support. As I read your post about leaving that other site, I thought that, as far as my experience as another Newbie here goes, you've found the right place.
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Once again, thanks to all.
A'Oop, I was referring to this JAMA article from last year: http://www.salterlabs.com/store/downloads/107.pdf Together with what you sent me via FunGuy (Ah! Just got the joke on that one), it ought to convince anyone--even a neurologist!
(And, after the 02 guy asked if I had a license to buy the O2, I didn't have much choice but to try to prevail on his potential sympathy for a CH sufferer. He actually told me that they were not allowed, by law, to sell 12-15 lpm O2 (in Virginia, outside DC). But maybe he was just sick of me by then. Suggestions for an improved strategy are always welcome, though I guess for now we'll wait on the forthcoming appointment -- and move on tomorrow to phase 2 of RC busting.)
I've been sitting up with my kid as she endures this middle-of-the-night horror, and I think of all of you as she goes through it and then somehow manages to face the next day with hope and a smile.
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Thanks. She has considerable light sensitivity (also more typical of migraine than CH), but she also has all classic CH symptoms. Even though she lives in a major metro area, her diagnosis history is crap (like most people's), and so much depends on self-"diagnosis" with the help of folks like you.
She got an appointment today at a major headache center -- for March 22, 2011! Sees her regular neurologist on Monday, but I hold out little hope for that: We're still trying to get this neurologist to prescribe high-flow O2. She'll bring the JAMA article with her this time. (I tried to buy some O2 at a welding supply place today and was told that a license or a prescription was required.)
Jerry
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During this cycle, almost every night along with her attacks my daughter has serious vomiting. Years ago when she started having CH, she'd vomit a little because the pain made her nauseous, but now she says she's not nauseated -- it just feels like her body wants everything that's in it OUT immediately.
She's not doing any busting (yet), so it's not a reaction to seeds. Just wondering how common this is.
Thanks.
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New to this place, and already grateful beyond belief for so much generosity of information and spirit. Thanks to all.
Jerry
Vomiting
in General Board
Posted
Thanks, Rock and MJ. She's doing so much better since these early posts of mine -- thanks to all the heroes at Clusterbusters. And once she got the CH under control, the vomiting stopped. I think you really might be right, MJ, because the experience very definitely was that her body wanted everything OUT, NOW, and her last vomit tended to coincide with the abating of her HA.
Much appreciated -- and may she never have to deal with that again!
Jerry