CHfather
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Posts posted by CHfather
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SciMMiA, your English is excellent, but I'm not sure I completely understand everything you have written. As Bejeeber says, the long duration of your primary attacks does not sound like it is CH, but the fact that a triptan helps, and the eye/nose symptoms, suggest that it is at least in the same category as CH. Are you also saying that in addition to the six bad attacks per month, you also have some "small" pain every day, and that pain is mostly associated with your eye?
If you do have CH, then you should have oxygen, and you should probably have a triptan that is not a pill but is either an injection (called Imigrane in France, I think) or a nasal spray (which I think is called Zomig in France). These triptans will stop your attack much faster than a pill, and if you are only using them for attacks about six times a month, you should tolerate it okay. Oxygen will stop a CH attack pretty quickly and it is not as potentially harmful as triptans. Oxygen is inhaled through a mask, coming from a tank/cylinder/cannister. Oxygen and triptans are the recommended treatments in the European Union for stopping a CH attack. Verapamil is the recommended medicine for preventing attacks. You have to take it for several weeks before it becomes effective, so you don't really know yet. Your dosage is in the low range, so your doctor might be going to increase it. That is the way that verapamil is correctly prescribed, starting with a somewhat low dose, monitoring for side effects, and then increasing as needed. Some people need three or four times as much as you are taking before verapamil is fully effective. You could also try the CGRP drug Emgality.
As Bejeeber has said, the Vitamin D3 regimen and busting are often very helpful for a variety of conditions. They have fewer side effects than the medications I listed above.
There are some people here who have both migraine and CH, sometimes at the same time, or one directly following the other. This is a possibility. Another possibility is some kind of hemicrania (hemicrania continua (HC); paroxysmal hemicrania). These look a lot like CH, and HC includes a constant headache. But . . . usually they do not have such long-lasting attacks as yours, and usually they do not respond to triptans. Have you seen an eye doctor to rule out a headache associated with an eye condition?
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Any reason not to take some seeds right now, preventively?
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On 6/25/2022 at 1:11 PM, mokokom said:
Oxygen increases the number of attacks also.
Pretty sure most folks here would disagree with that.
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Haz', I remember you well, and I'm so glad for your long remission! You worked hard for that.
In general, people here have reported a wide range of results from propranolol (Inderal), which was actually prescribed for CH way back when and still is sometimes these days (it seems to help prevent migraines), from seeming to reduce their attacks to having no effect to seeming to make them worse. I think only one person thought it made them worse. You can see what people have said by putting propranolol into the search box at the top right of each page (if you're going to do this, do Inderal, too). It seems highly unlikely to me that it would set off a cycle.
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Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds? Has he prescribed oxygen? Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH?
What are you doing beyond pharma meds? D3 regimen? Busting?
Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system. A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds. And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive; the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.
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At the home page, there's a tab (upper left) called "Users Online." It says that right now there are 94 users online. I don't know how that number is arrived at, and I suspect it's not anywhere close to an actual reflection of how many people are actually making use of the site (as opposed to search engines finding it, or maybe multiple entries that reflect each time one person does a different thing), but maybe it does suggest that the information is being used, even if there are not many active discussions. (There's also an "activity" tab where you can see that there are people joining.)
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This sounds kind of nuts. You can't keep taking steroids -- once a year is the recommended maximum (although some of your courses have been relatively short, so it's not like you've done it three times). I don't know whether what's going on is making your cycle worse (sometimes they're just worse), but I think there are some things to do.
280mg/day of verapamil (if I'm reading you right) is still not a very substantial dose, so that could go considerably higher. But if you're going to get titrated slowly higher, that will take time . . . and verapamil can be bad for you, too. I think we would recommend that your first steps would be to start the Vitamin D3 regimen ASAP and make sure your oxygen system is optimized. The D3 regimen is described here http:// https://vitamindwiki.com/Cluster+headaches+virtually+eliminated+in+7%2C000+people+with+high-dose+vitamin+D+and+cofactors+-+Feb+2022, and you can get lots of help from folks here with understanding it and doing it right. Your O2 system should of course be from a tank/cylinder (not a concentrator), using a nonrebreather mask or, even better, the mask designed for people with CH. The flow rate of your regulator should be sufficient that you can inhale and exhale deeply and never have to wait for the bag on your mask to fill before you do your next inhale. And you should be sure that you are using a good breathing method and you probably should do as most people do and get some caffeine in you as you start the oxygen. There is info about all this (and a lot of other stuff) in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
Beyond those basics, I think we would urge you to consider busting (the essence of which is described at the end of the file I just gave you the link for). I would also think that in the short run, aborting with a triptan (Imitrex, Zolmitriptan...) is better for you than the steroids, particularly if you split the Imitrex doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
To me, the main thing is to get stabilized without steroids, and find the strategies that will be most reliable for you over the long run, with the least side effects.
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In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds. Most are variations on things that have already been listed in this thread, but maybe worth a read. In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks. (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.)
Since you are new to actually dealing with CH, you might want to look through that whole document. It also contains some tips about how to make it more likely that you get an O2 prescription.
Keep us informed . . . .
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This is good news, Jeff, particularly the part about you having no side effects. Thank you for letting us know.
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5 hours ago, spiny said:
I have found that the caffeine pill seems to work better . . . . The absolute fastest is to dump in the powder sans capsule and chase it with cold liquid.
Fascinating. I feel like this is the first time I've heard of doing it that way. What strength are the pills that you use? (You're doing this instead of the V8 Energy, or alternating them in some way???)
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Interesting . . . Thanks, Denny. I'd just note that it contains a lot of aspartame, which would concern some people, and another controversial sweetener, acesulfame potassium (and controversial food colorings), and it has about the same caffeine as 8 ounces of coffee. Coffee + a taurine pill might work just as well, in a similar cost range, with maybe less health risk.
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1 hour ago, DJ Cluster said:
The reason is I'm searching for the holy grail; a non-invasive & cost-free preventative! It's only anecdotal at this stage but I'm 95% sure I supressed my CH's & will do so again with better discipline.
Our Vitamin D levels are part of the problem but I'd suggest we just need the correct amount/intensity of light, at the right times, and our geographical locations definitely plays a part in our Vit D3 levels. [My regime includes getting as much sunlight as possible in the hours after I wake]
NOTE: I'm not here to dissuade anybody's regimen & I'm truly glad if people have helped themselves, but I'm looking into other ways to correct my VD levels.
Copy & pasted for example:
*Sunlight, in particular UVB between the wavelengths of 290 and 315 nm, is the main source for producing vitamin D in the skin and is the primary source of vitamin D for the body. It is estimated that 90% of the daily body requirements are met by sunlight exposure .
*One minimal erythemal dose (MED) of UVB exposure to 6% of the body surface area is equivalent to the ingestion of 600–1000 IU of vitamin D
*A recent Johns Hopkins Hospital study found 109 out of 134 CF adults in the clinic to be vitamin D deficient [serum 25(OH)D <30 ng/ml], and none of the 33 CF subjects who finished 1 200 000 IU of oral vitamin D2 over 4 months showed correction in their vitamin D status
*Despite 50 000 IU of ergocalciferol once a week for a total of 16 weeks in vitamin D-deficient CF patients, all of the patients remained vitamin D deficient
You do you. Bold experimentation got many people at this site to the better place where they are now, so no one is going to deny your privilege to do the same. If you reach the grail and share it, we all will benefit.
But I'd be careful about putting too much stock in the quotes you provide here, since they are from a study of people who don't absorb vitamin D or absorb it very poorly -- "patients with malabsorption syndromes" as the article's title says. So it stands to reason that they can cite the research you mention showing malabsorption in these patients, but it doesn't say anything at all about people with normal absorption. One reason I looked at the study is that the quotes you provide so are contradictory to what has been observed time and again with the D3 regimen, where D levels go up significantly as people take more D3 (and not D2, which is the stated product in one of the quotes).
The "minimal erythemal dose" mentioned in one quote means "the minimum amount of x-rays or other form of radiation sufficient to produce redness of the skin after application, regarded as the dose that is safe to give at one time." You would have to create a whole lot of redness, or mild sunburn, all over your body day after day, to get to a substantial daily dose of D. The increases reported in this study from using the sunlamps for eight weeks might be beneficial to the patients in the study, but they are trivial in relationship to getting D to a level where it makes a difference for CH. Plus, it appears that the tanning machine (not cost-free) couldn't sustain increases.
Maybe the first quote, about sunlight, is accurate. But there have been many people here who have believed that their pattern of daily activities, from working outside to a lot of daily outdoor recreation or gardening, would have given them a satisfactory D level -- and were surprised to find out that they were at or below even the minimum level, let alone the substantially higher level needed to combat CH. I don't know what they are considering the "daily body requirements" in that quote, but the level of D required to combat CH is substantially higher than what medicine considers to be the "daily body requirements."
Like I say, bless you in your search for a "non-invasive & cost-free preventative." Something is working for you now, which is great, and who knows what you might discover.
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The link at the top of this post will take you to a page updated by Batch (xxx) in February of this year, and the post and replies contain more information: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This should cover the basics, but, as I say there, I'm not confident that I am fully up-to-date on all of the current revisions.
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3 minutes ago, Shaun brearley said:23 minutes ago, DJ Cluster said:
I refused oxygen & the injectable form of Sumatriptan...Sometimes I don't bother with the suma and face the pain head on and say "Let's roll bitch, what you got"....I'm slowly learning I can't run away from this
You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their
What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!) You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad. You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries. But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).
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Some notes that might be pertinent to some of this discussion.
The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there
was no particular month the cycles would always begin."In that same study, 22% reported having just one attack per day.
Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836
On 4/30/2022 at 5:28 PM, xBoss said:I pray that my daughter will not have them. She is two years away from when mine started at age 27
In that same Rozen study, 6% of people reported having a father with CH.
Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.]
Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.
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Monica, I'm story #3 in that booklet, so my situation is different, and I'm probably not material for what you are thinking of writing. I wish you the best with it.
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Monica, this booklet doesn't do all of the valuable things you are aiming to do, but it does have brief Living with CH - 8.5x11 - 9-15-14.docxpersonal accounts from people with CH. This was created more as a way of educating family/friends/co-workers/etc. about CH than telling people with CH what they already know.
(I didn't think the link was going to get pasted right in the middle of that sentence, but it seems to work.)
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3 hours ago, devonrex said:
Edit: Also, I have been lied to, apparently I leveled up without the need of kittens, so my entire world view is shattered.
Like everything else here, the kitten hypothesis is just an idea that is being tested by the citizen scientists. Or maybe your image reads as a kitten's eyeball. Or maybe one eyeball = one kitten, but two kittens are more efficacious.
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Speaking of Shaun as we were, I have to say that I looked up your image, Jeebs, fascinated by the idea of kitten jelly. Turns out that this product is made in the UK and sold to customers in the US by a company that proudly declares: "British Essentials was founded so that more people around the world could enjoy the taste of British Food & Drink, without being restricted by where in the world they may live. Our core mission is to make British Food & Drink accessible to everyone around the world." I have often warned my wife that if she continues her spendthrift ways we will be reduced to eating catfood in our late(r) years. Now at least I know that we will be able to vary our diet with the finest of British Food & Drink.
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1 hour ago, jon019 said:
...in honor of the trend, i submit 2 pre-jon generations:
......the clue is "pockets"
OMG!
(a whole bunch of fuel cats)
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17 hours ago, Shaun brearley said:
Can I be a cool dog pleeease
You can be a hot dog!
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All cats all the time here -- Jeebs, B'P', me, and of course there's no cooler cats than jon019 and S'b'.
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On 4/17/2022 at 7:55 AM, Bejeeber said:
a member such as CHfather, who should have the highest of the high rankings
I had been trying an adorable profile pic to see if I could get more leaderboard likes that way, or at least raise my rank to be a little closer to yours, Shaun's, spiny's . . . and everyone else's. Apparently a Jigglypuff was not cute enough, or perhaps there is some hidden Pokemon animosity here. So now I'm all in! How can you not like this!
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Just my usual note that, contrary to what one might think, a small energy shot such as 5-Hour Energy has twice as much caffeine as a standard Red Bull or Monster -- and is a lot easier to get down fast. Also, as has been noted, coffee does the job for many, and some find benefit from taking a taurine pill along with the coffee. Finally, any caffeinated drink seems to work better if you have been off of caffeine for a while (e.g., before your cycle starts).
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Do I have CH ?
in General Board
Posted
This is where you can find the information about the D3 regimen. It might be a little hard for you to get through in English. There is a list/table there showing the basic ingredients. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people