CHfather
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Posts posted by CHfather
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Whooli, I'm so glad you're getting relief. I remember when you first came here. I'm am so sorry that we didn't mention HC and indo back then!!!
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There are several folks here who use, or have used, ketamine. Their situation was similar to yours -- tried everything -- and their results, as I remember, have been similarly positive. I'm pretty sure one of them will respond. I'll just say what I "know." There was an excellent presentation about ket at the 2013 conference. Here are two things I remember, which I might be wrong about (but don't think I am): (1) the stuff gets kind of addictive, psychologically if not physically, and it can be hard to manage that; (2) a "holiday" from ket is strongly recommended (I don't remember how regularly--every six months, maybe?), and that period can be rough.
Of course, ket has shown very strong effectiveness as an anti-depressant, which doesn't hurt. (Brief article about that here -- http://www.webmd.com/depression/news/20140923/ketamine-depression. A new and very effective anti-depressant that will come onto the market in a year or two has the same anti-depressant mechanism as ket, without the side effects. Some of us hope this might also work for CH. Info about that, if you're interested, here: http://www.nimh.nih.gov/news/science-news/2013/ketamine-cousin-rapidly-lifts-depression-without-side-effects.shtml.)
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Fab, here's a link to the page: http://www.thesun.co.uk/sol/homepage/woman/health/health/6335377/Ten-illnesses-so-bad-they-scare-doctors.html However, I can't see it without joining (free for one month), so maybe you could copy it and paste it here. Or not.
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A topic we've discussed here from time to time. You see the part where they say that some CH is responsive to indomethacin, and also the warning at the end that responsiveness to indomethacin is not a great diagnostic criterion for what type of headache someone has. I suppose I'm cautioned to be a little more careful when this subject comes up.
http://link.springer.com/article/10.1007%2Fs11910-014-0516-y
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No spinal tap history for me.Â
Any experience with spontaneously combusting drummers?
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BACKGROUND AND PURPOSE Cluster headache (CH) is a primary headache disorder characterized by severe attacks of unilateral pain following a chronobiological pattern. There is a close connection with sleep as most attacks occur during sleep. Hypothalamic involvement and a particular association with rapid eye movement (REM) sleep have been suggested. Sleep in a large, well-characterized population of CH patients was investigated.
METHODS Polysomnography (PSG) was performed on two nights in 40 CH patients during active bout and one night in 25 age, sex and body mass index matched controls in hospital. Macrostructure and other features of sleep were analyzed and related to phenotype. Clinical headache characterization was obtained by semi-structured interview.
RESULTS Ninety-nine nights of PSG were analyzed. Findings included a reduced percentage of REM sleep (17.3% vs. 23.0%, P = 0.0037), longer REM latency (2.0 vs. 1.2 h, P = 0.0012) and fewer arousals (7.34 vs. 14.1, P = 0.003) in CH patients. There was no difference in prevalence of sleep apnea between patients (38%) and matched controls (32%, P = 0.64) although the apnea index in patients was numerically higher (mean apnea-hypopnea index 10.75 vs. 4.93). No temporal association between nocturnal attacks (n = 45) and particular sleep stages was observed.
CONCLUSIONS To date, this is the largest study of sleep in CH. It is demonstrated that REM sleep is affected which is in line with our current understanding of CH and hypothalamic involvement in the regulation of this sleep stage. Further, fewer arousals were found in CH patients but no association between apnea events or specific sleep stages. The findings support a central role of the hypothalamus and arousal systems in CH.
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Bob,
Google Translate does an adequate job of translating into most languages. It certainly would be understandable, or at least would only require minor modifications (so no one has to sit there translating the whole thing).
We have had some people here who speak Spanish. If no one volunteers, I could use my rudimentary Spanish skills along with Google Translate to create what I'm pretty sure would be a workable translation.
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John has been a tireless advocate. If you've been to a conference, you've met him. He's a regular at Headache on the Hill. He used to post a lot here, but he's more involved at Facebook now, and dealing with a lot of challenges. You can endorse him for a WEGO Award here: https://awards.wegohealth.com/nominees/1441
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I have no idea what prolactin might have to do with CH, but I remembered this study, in which prolactin was one of three things studied in relation to CH. http://www.docguide.com/hypothalamic-dopaminergic-stimulation-cluster-headache?tsid=5 Maybe it might have some relevance to your neuro.
There's also this information, from a thread that I also do not understand: >>cluster headache has been a documented SYMPTOM of prolactinoma<< https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1392933260/1 Note that the poster is not right about bromocriptine being the same as BOL-148.
This "information" might all be useless. If so, I apologize for wasting your time.
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It's also not in his professional interest to talk about having a potentially debilitating condition, as opposed to saying that with verap or whatever he's taking he's "just fine." Tough to get hired for a demanding movie schedule if people are afraid there will be times/days when you can't show up or won't be at your best.
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Gosh, I'm sorry to read that. I've reached the limit of my puny O2 expertise. Maybe someone with more wisdom and experience will have a suggestion. I know that some people drink an energy shot or energy drink after they've aborted an attack with O2, and say that helps keep the next ones from coming on. (Many, or most, do the energy shot/drink at the beginning of using the oxygen, to speed up the abort, but, as I say, some do it at the end for preventive purposes.)
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You're far from the first person who has faced this problem, nss'. I don't know whether anyone here has successfully dealt with it. If there's anything useful to tell you, someone here will do so, but you might also ask over at www.clusterheadaches.com, where there are a whole lot more sumatriptan users.Â
Just two additional thoughts: There's no reason at all for you doctor to think after a month and a half that you're going from episodic to chronic -- and that happening would bear no relationship to not having trex injections. That's just crazy talk. (If anything, there are more than a few people who attribute becoming chronic to over-reliance on trex.)
For future reference, many people extend the life of their injections using the method described here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077.
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So glad you're past that dark point now.
Would you mind telling us more about your oxygen setup? Rebound headaches are very rare from O2. You want a non-rebreather mask and a flow rate of at least 15 lpm. For most people, if they stay on the O2 for a while after knocking out the present attack, it also tends to prevent subsequent ones. O2 is such a good friend of so many with CH, it would be good if you could find a way to make it work for you.
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you want to talk to "Batch," the guy who knows this stuff inside-out. check your PMs (top left of the page, where it says "you have X new messages.") i'm sending you his email address. if he doesn't reply quickly -- which he almost certainly will -- let us know.
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From Batch: >>CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL.<< That's a pretty big range, and it appears that you're very near the top of it. This calculator says you're right that 350=140: https://chronicillnessrecovery.org/calc/index.php
So, I'd go with spiny's advice to drop it back to 5kIU, but stay on top of it.
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Fascinating! Would it be cool or what if this explained things!
BTW, didg, congratulations on having achieved God Member status!
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Not ignoring your question, cn, just not fully sure what you're asking. Twinges of pain in the eye for someone who doesn't have CH? In general, I think we all get twinges all the time that we notice but don't worry about unless we have some reason to fear that they have more meaning . . . so most twinges, I'd say, are meaningless in terms of indicating a deeper problem. I guess it's partly a matter of how often/how severe, etc. This probably isn't answering you very well -- sorry.
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Your mom was a very big help to me when I first came here, so please thank her for me. I remember her posts as being pretty short, but always to the point and valuable. She's got some OCD in her, too, if I'm remembering right.My mother is actually a member of this site. I think she goes by raquelinkansas, and goes by Rock. -
Well . . . In Rozen's big CH study, 3% of the people who had CH also had mothers with CH (6% of people with CH had fathers with CH). There's actually a lot of data showing some family connection, and when you first read those things it can sound a little scary: 14 times more likely to get CH, or even higher, and things like that. But, though I'm no statistician, I assume that would mean 14 times whatever the percent is in the population as a whole, which would mean at most (I think) 14 x .1, or 1.4%. So the actual likelihood that you're going to get CH, while maybe bigger than you'd like it to be, is still very small.
(In general, these kind of data can be scary. You read something that says "people who do x have a 20% higher risk of [some awful thing]," and you have to take a moment to realize that if the general risk is .1%, your risk is .12%).
Migraine, on the other hand, is definitely familial. I've read that as many as 4 out of 5 people with migraines have a family history of that condition.
My father died at 46 from a heart attack, which creates a family risk condition. My two brothers and I all celebrated when we reached 47. We're all going reasonably strong -- my older brother is 79, and last year he moved to Cambodia, full time, because he thought he might enjoy living there for a while.
So, cn, I'm very confident that you'll be happily CH free for many years to come, probably for your whole lifetime.
Regarding your mom, please start a thread with as much information as you can give us about her (what she's doing now for her CH, whether she's episodic or chronic -- those kinds of things). You'll get lots of ideas for her.
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 GREAT to hear this!we actually are getting continued good news on the hubby front,, chemo continues to shrink his tumors
  This, too!My sons CH's have been quiet. -
Interesting, didg, and thank you. I worry that there's not a happy explanation for your recent absence, but I hope I'm wrong.
From 2005: >>A device that sends pressurized carbon dioxide up one nostril and out the other -- without being inhaled -- appears to rapidly abort migraine pain, researchers reported. In controlled studies, nearly 30% of patients suffering from migraine attacks were pain-free within two hours of initial treatment with the CO2 device.<<Â
This doesn't seem like a particularly good result, does it??? "Rapidly?" I don't think so. http://www.medpagetoday.com/Neurology/Migraines/1817
The company that's proposing to test this for CH, Capnia, had to cancel its migraine clinical trial because of "low enrollment and lack of funding for study." https://clinicaltrials.gov/ct2/show/NCT01253915 The CH clinical trial, in which some folks will get a placebo while others get the "real thing," doesn't seem to have been scheduled yet. I was amazed that there were people courageous and public-spirited enough to do that maybe-getting-the-placebo thing with that vagus never stimulator clinical trial; seems like it might be even harder to get folks to sign up for this one.
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probably....wait until some super rich and famous person gets diagnosed with CHs.... then we'll have a spokesperson! (or do we?)
A lot of us had hoped that when Daniel Radcliffe (Harry Potter) was diagnosed with CH, he might become a spokesperson of some sort. Hasn't happened yet. From time to time, we think of other possible famous spokespeople, but not much comes of it. In the non-famous category, some of the greatest folks possible are out there advocating for CH awareness -- Bob Wold, for example, and others who I won't cite by name but who are advocating their butts off every single day, including at Headache on the Hill. And we do have a matinee idol, Dan "hipshot" Ervin: http://channel.nationalgeographic.com/channel/drugs-inc/videos/magic-mushroom-medicine/
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Here's an interesting discussion of that. Can't see why what's true of cold outside air for runners wouldn't be basically true for inhaling O2 from a chilly tank kept in your car (still probably less cold than the outside air, I'd imagine). Of course, I could be wrong in making this equivalency, so please just consider it as some information until a smart person actually answers your question.'
http://www.fleetfeetcolumbus.com/training/mit-articles/got-a-burning-in-your-lungs-how-to-breath-in-the-cold-weather (In another thing I read on this topic, it emphasizes that breathing through the nose is a better way to be sure cold air becomes warmed than breathing through the mouth.)
>>>This time of year I know that many people become cautious and nervous about the cold air you breathe in while running outside, and that you are concerned your lungs were going to be exposed to very cold air and potentially damaged. Many express specific concern about the burning sensation that is sometimes felt in the lungs while running in the cold.
I want to reassure all of you that your lungs will be completely fine. The air you are breathing in when running outside this time of year, while very cold in the atmosphere, is not cold at all by the time it reaches your lungs. Let me explain what happens, and why you feel that burning sensation.
First, know that by the time breathed in air reaches the bottom of your trachea (i.e., your wind pipe) it is warmed to body temperature (98.6 degrees F) and is 100% humidified. This is true no mater what the ambient air temperature is, and no matter what the relative humidity is in the atmosphere. So there is never cold air that reaches your lungs.
The burning sensation some of you are experiencing is caused by the dehydration and subsequent irritation of the cells that line the trachea. As air is breathed in this time of year, the relative humidity of that air tends to be very low (especially when compared with the relative humidity of the air in the summer time). Remember that the air needs to be brought up to 100% humidification before it reaches your lungs.Â
Where does all that extra water (humidity) come from? The answer is the cells that line your trachea give up their water supply to humidify the air that is about to go into your lungs. This is not a problem if you are only outside for a short period of time in the cold weather. However, when you are outside working hard (e.g., running) and you are breathing a lot harder, those cells that line the trachea become severely dehydrated. Once dehydrated they become irritated, and you perceive this dehydration and irritation as "burning" in your throat and lungs. This sensation is not at all uncommon for those that are new to exercising outdoors in the cold weather.
There are at least two things you can do in order to minimize the feeling. First and foremost, you must stay hydrated this time of year. I know many of you might think that it is cold out, I am not really sweating all that much, so why do I need to drink for hydration this time of year. The answer is you are sweating more than you think, and if you stay well hydrated you will go a long way toward minimizing that sensation of "burning" in your trachea. The other helpful tip is to focus on deep breathing and not "panting" as much. Short quick breaths will irritate the trachea even faster.<<<
The worst pain known to medical science... really?
in General Board
Posted
Goadsby: “probably the worst pain that humans experience”
Goadsby, Peter. Interviewed on Health Report. Radio National. Transcript at http://www.abc.net.au/radionational/programs/healthreport/cluster-headaches/3568262#transcript
Also Goadsby, in a medical journal (with a co-author): "It is an excruciating syndrome and is probably one of the most painful conditions known to mankind." http://pn.bmj.com/content/1/1/42
Also Goadsby, also with a co-author, also in medical journal: "Few, if any, medical disorders are more painful than cluster headache." http://www.bmj.com/content/344/bmj.e2407