CHfather
-
Posts
6,515 -
Joined
-
Last visited
-
Days Won
381
Posts posted by CHfather
-
-
 Here's some info about that. I assume that if our good friend Dr. McGeeney is excited about it, it's because it might work for CH too. http://migraine.com/pro/calcitonin-gene-related-peptide-cgrp-prevention-migraine-positive-phase-ii-results-two-new-studies/Dr. McGeeney says the potential new treatment for CH he's most excited about is the anti-CGRP antibodies that pharma is racing to develop.Since these are both Stage II trials, it might be helpful to have a sense of the trial process. That is described here: http://www.pfizer.com/research/clinical_trials/phases_of_development (I know there are also subsets within the stages (IIa, IIb, etc.).) I am totally just guessing here based on a little experience, and I know others will correct me, but I am estimating that the time from where those drugs are now to the time they come to market (assuming that the tests continue to show effectiveness and safety) would be 18 months - two years. I suppose people with CH would not be eligible to participate in the trials (only people with only migraines).
Looking forward to learning more. Thanks, Jeebs!
-
Formby, there's a lot to deal with there, and a lot of our members are attending our annual conference right now, so you might not get as much of a reply as you otherwise would.
As Fab says, it's sad but true that your husband's story is like a compilation of most stories of people with CH. And yours as a supporter, too (I'm a supporter myself). So many people here have been through all that he's been through, and are much, much better off today than they once were. That is . . . There is hope!
Are you saying that he's currently taking all those meds (neurontin, baclofen, topirimate, +, +, +)? That seems nuts. And, as Fabac wisely observed, no injectable Imitrex??? Now, it might be that on your trip to SHANDS a doctor might at least sort that out. I don't know what to say about all those meds -- I feel kind of flabbergasted, and if he's taking all that crap (and even that doesn't seem to be working), it's hard to know what to recommend.
It seems to me that the first thing you want to do is try to get his oxygen working well again. Because it worked before, I'm assuming that he has a standard system -- a flow rate of 15 liters per minute and a non-rebreather mask. Is that correct? Do they not give him oxygen at the ER? (I'm just wondering whether it works better there, if they do.) There are two (or maybe three) things he might try right away for his oxygen system:
(1) try drinking an energy shot (like 5 Hour Energy) or an energy drink (like Monster or RedBull) at the first sign of an attack, just before getting on the O2. Frankly, I'm even a little nervous about recommending this caffeine jolt because of all the meds he's on, but it does help a lot of people.
(2) Remove the bag from his mask and replace it with a turkey roasting bag or an unscented kitchen garbage bag. That will allow him to breathe more deeply and quickly without having to wait for the standard bag to fill.
(3) Consider trying different breathing strategies. For example, hold the air in the lungs for a couple of seconds before exhaling; look down toward the feet while doing O2; consider hyperventilating.
You/he should read the ClusterBusters Oxygen Page under the black and white MENU tab on the left side of the page.
It's premature to talk about "busting" -- using substances like "magic mushrooms" to treat CH. He would have to be off many of his medications for at least five days before doing any busting, and that doesn't seem very feasible right now. So I will just say two things about busting: (1) There's is practically no one here who likes using psychedelics. They do it for the same reason your husband would -- because it often works and it's better than CH pain and the side effects of standard CH drugs; (2) There are busting substances he could try that would be very unlikely to cause him any kind of serious "trip" (or any trip at all), but that still work very well. So this might all be worth considering when he's ready, and when he's able to get off the drugs. (Yes, people do that, even people in situations similar to his. But having effective oxygen is critical for that.)
Two more things: (1) To learn more about busting, go to the numbered files in the ClusterBuster Files section of this board; (2) You might want to also visit the site www.clusterheadaches.com. That site is populated with a lot of very helpful people who typically use standard CH meds rather than busting. You might find some valuable thoughts there.
We're here and happy to help as much as we can. Like I say, folks here have been where he is or where you are. There is hope.
-
Rozen's 2011 study found that 55% of people with CH have considered suicide. 2% of the people in his study had attempted it. http://www.researchgate.net/publication/51792884_Cluster_headache_in_the_United_States_of_America_demographics_clinical_characteristics_triggers_suicidality_and_personal_burden The national suicide rate (not attempts; actual suicides) in 2011 was about .01% https://www.afsp.org/news-events/in-the-news/new-data-issued-by-the-cdc-releases-2011-suicide-statistics-showing-continued-rise-in-suicide-rate
-
Funny post, Fab (and sad -- and happy, the PF part!). A while ago, ClusterBusters put together a brochure, "20 Facts About CH," that can be pretty helpful -- IF you can get people to set aside their preconceptions just for a few moments, and IF you can get people to actually sit down and take the 6 minutes it might take to read it. I don't know where this is available, but I have a copy here, so I'm attaching it.
I think there's another product that ClusterBusters has been working on, called "Living with Cluster Headaches," that I think might be ready for the conference this week. It has 28 first-person accounts of what it's like to live with CH, or to have a loved one with CH.
-
Welcome, Luigi. Your English is excellent indeed.
You can read about the method that we call "busting" by going to the ClusterBuster Files section of the board and reading the files there that begin with numbers. Here's a link to that section: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files You would particularly want to read files #1 and #3, but many of the others will be valuable, too.
Of course, you should ask questions and check back with us. There's even a doctor from Italy who is often here with very good advice!
8 sumatriptan injections a day is not good!!! (I'm sure you know that.) At least, you might want to use smaller doses. You can read here about how to do that: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 You might be able to continue taking verapamil if you decide to bust, but you probably will not be successful if you continue using the sumatriptan injections. Having a better oxygen system might help you stay off the sumatriptan. You might be able to get better results from your oxygen if you change your system. Please read the "Oxygen Page" under the black and white MENU tab at the left side of the page. Also . . . have you tried drinking an "energy drink" or "energy shot" at the first sign of an attack (in the US, those have names like 5 Hour Energy, RedBull, and Monster). That helps a lot of people.
The vitamin D3 approach also has helped a lot of people. You can read about that here. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
-
Melody, just to have terms clear, what we mean here by a "blocker" is something that prevents busting from being effective (not something that "blocks" cluster headaches from occurring). So it isn't just that if you take a blocker along with a psychedelic you wouldn't know which was working -- you could be pretty sure that the psychedelic isn't working, because it's being blocked.
To add a little to what Denny said about lithium, here's what is written in the file, "Playing Well Together," that he suggests you should look at. It could be that more is known now about the interaction between lithium and busting, but from this it sounds like something to be wary of.
>>>Lithium
People taking lithium, whether it is for preventing cluster headaches or for some other reason (it is often prescribed for people with bipolar affective disorder - see below for more on bipolar disorder). Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects.
The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches. <<<
-
timmyy,
There are quite a few people here who have had success with mushrooms while still taking verapamil. How much are you taking? If it's a lot, you might have better success with busting if you can cut back.
Lithium you have to withdraw from gradually, and you should do that with a doctor's supervision.
No one really knows the minimum time to be off medicines before taking mushrooms. Some have tried and been successful after four days. I don't think anyone would recommend less than four days. Most would say that it's much better to wait the standard five days.
-
There are currently a few other people trialing it . . .Â
Lt2, since it's legal to buy and possess 5-MeO-DALT, I don't feel uncomfortable asking this, though you might not feel comfortable answering it.
par says s/he bought the stuff here: https://www.brc-finechemicals.com/5-meo-dalt.html But that site seems only to ship within Europe. Are you willing/able to say where the testers you mention got theirs?
-
It's very late for me to putting in this two-cents-worth, but I wonder whether there would be any way to create some kind of organized discussion about obtaining SSI Disability status. Maybe there's not much to say, and maybe there's not much interest, but it is a topic we've discussed here at the board from time to time, and I'm curious about stories of success (and non-success) in getting disability.
-
-
didg, to save you the trouble of doing this googling yourself . . .
http://www.ncbi.nlm.nih.gov/pubmed/15658944
http://www.electrocoremedical.com/clinical-trial-shows-electrocores-non-invasive-vagus-nerve-stimulation-therapy-is-effective-in-reducing-cluster-headaches (these foks were at the last CB conference and will be at this one, too)
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&ved=0CEUQFjAE&url=http%3A%2F%2Fwww.thejournalofheadacheandpain.com%2Fcontent%2Fpdf%2F1129-2377-14-S1-P231.pdf&ei=3_cAVL-ZMciBygS1iIDwBg&usg=AFQjCNFg6-DZochCQO0OksSuughRumrrSA&sig2=8kDvfEjZ69-QrRMxZ9l02g&bvm=bv.74115972,d.aWw (an earlier paper related to the previous one)
I'd be surprised if the GERD tree itself is worth barkin' up (too many people with CH don't report GERD as something common to them; way too many people with GERD don't have CH), but your wise brain might just find something!! (And if I were you, I guess I'd have your son see a doctor about his reflux, because it sounds like it's too darn frequent, which could either indicate that something else is wrong, or can eventually lead to something he would very much want to avoid, like http://www.webmd.com/heartburn-gerd/guide/barretts-esophagus-symptoms-causes-and-treatments.
-
That would be September 2, I'm pretty sure.
-
Just a note about melatonin, with apologies for maybe overcomplicating this topic. It's not very "bio-available" (doesn't get into your system very quickly or very thoroughly). Some have had good success with a chewable brand (available at Trader Joe's, among other places) that comes in very small dosages (like .5 mg); I think others will say the time-release version is also good. So there are a lot of variables in kind and dosage.
Also -- While some people have good results with melatonin (which, as you say, stands to reason given melatonin depletion observed in CH patients), a few others have found that it seems to make their CH worse. (I'd say -- though I could be very wrong about this -- that for a lot of people there's no difference. But they might not be pushing the levels as high as might help.) These things are so tricky to get specific about because there are so many other factors. Just sayin' -- if you feel like things get worse, it could be the melatonin.
-
What are thoughts on the Neurostimulators and hope of relief of cluster headaches? Any real life success?
ClusterBuster founder Bob Wold says the folks who developed this device will be at this year's conference.
-
Fab',
How much melatonin are you taking? What form (chewable, under-the-tongue, plain ol' pill . . .)?
Did you get your oxygen?
-
gg, it's my understanding that lots of people stay on the 10,000IU of D3 all the time. Have you had a blood test for your D level?
Do you ever try an energy drink or energy shot to about your attacks? Seems like at your level, that might work for you.
-
Or should I start back up on the Verapamil? I've been off of it since the end of April. Been on D3 5000ui per day.
I think we're increasingly seeing that verapamil is not the full blocker of busting that it was once thought to be. So (my opinion only here) if you think verap will help you, and your dosage is low or moderate, you might be able to resume it while continuing busting. Not the ideal course, probably, but not crazy if you feel that maybe busting is losing its effectiveness.
5,000IU/day of D3 is probably not enough. I'd suggest stepping up to the recommended 10,000IU -- and you should get a blood test to see what your D level is. Are you doing all elements of the D3 protocol: Omega-3s, acidic juices (lime, etc.), other vitamins? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (maybe the regimen has been updated over at ch.com since this was posted; this is my latest info).
as Jeebs says, you might try switching to a different busting agent. LSD is indeed often hard to find, but LSA/seeds are easy to get.
-
when O2 doesn't work in the middle of my cycle
g'gal, have you tried higher-flow oxygen with the mask specially designed for CH? Those things can make a big difference. See the CB Oxygen Page under the black and white MENU tab for more information and other suggestions.
-
Got it! Thanks, FG, for this and all the other things you do. See you there.
-
This is useful, didg -- thanks.
Here's some additional information, including a chart on the second page, comparing CH (first column) to Charlin's Syndrome. Unfortunately, the whole chart can't be seen.
It's clearly not impossible that given all the sloppy diagnosing going on out there, some people think they have CH when they have Charlin's. I guess the "nasociliary block" test would help determine it, as well as a well-read MRI.
-
-
FWIW, still no rooms as of 3:55 Eastern Time.
-
I've read one or two accounts of people who were labeled as "cholicy" but who now think they probably were suffering CH attacks. I think that's true of my daughter, who cried hysterically from time to time as a baby.
-
So sorry you won't be there. You're always a great contributor.
Home After 4 Hits and Almost being Killed
in General Board
Posted
You guys are just making me feel worse and worse about missing the conference! Michael, I'm thrilled that you're here. Thank you so much for all you have already done, and thank you in advance for the support you will be to future visitors to this board. I hope maybe we can continue to help and support you, too.