CHfather
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Posts posted by CHfather
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A good reminder. Thank you.
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@Baby Moth, your best bet for seeing posts here about GammaCore is to type gammacore into the search bar at the top right of the page. You'll get about 160 posts.
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If it's the sumatriptan injector (Imitrex) that you have, you can split your injections to use less and still get the same results. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
YES, get that oxygen. Changes everything. See the overview file linked to in the last sentence below for more info about getting and using O2.
Are you doing the whole D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/
Was the loratadine (Claritin) prescribed, or did you decide to take it? (It's a good idea; I'm just wondering.)
If you're not taking the full D3 regimen, you don't have a real preventive medication. That's what the Depakote would be for. I don't think Depakote is prescribed much anymore (side effects, I would guess), but it was fairly effective in small clinical trials. If you do the full D3 regimen, you'll get the prevention without the side effects. I take it you haven't tried Emgality or one of the newish CGRP medications?
Since you're new to this thing, you might get some thoughts from this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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2 hours ago, Dallas Denny said:
I can only recall one forum member from the NYC area and he hasn't been active here in several years!!
I think that might be the member Into Light. @TorontoCanada, you might try DMing him. (Click on the envelope icon at the top right.) He did not leave here under the happiest of circumstances, but he seemed like a good-enough guy to me.
I assume you have talked with your O2 supplier. Googling "oxygen tank rentals in New York City," I did see a few things, including this: https://www.cloudofgoods.com/new-york-city-ny/medical-rentals/oxygen-tank-127. It's a very small tank, maybe good for one abort. But maybe they'll be willing to tell you about bigger ones. Lots of listings for people renting concentrators . . . which might be better than nothing.
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@Mike OB, that is some combination of unpleasant meds you're taking! As a small suggestion, I would consider splitting your sumatriptan injections. Most people can get good relief with a third or half of what's in that injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
As a larger thought, the vitamin D3 regimen has worked very well as a preventive for hundreds of people, and might allow you to get off a couple of your current meds. https://clusterbusters.org/forums/topic/1308-d3-regimen/
And then there's busting, which of course is the primary reason this site exists. You can read about that by clicking on "New Users -- Please Read Here First" at the top of any page.
Lithium usually is only prescribed to people with chronic CH, because the rebounds from stopping it can be severe (and of course many people have unpleasant side effects).
I would imagine that if those meds are working okay for you, you might be very reluctant to experiment with alternatives. I'd only suggest that the absence of negative side effects from D3 and generally from busting would almost certainly be better for you in the long term.
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22 hours ago, MagicAces said:
Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point.
Great questions and comments from FunTimes. It's not clear to me whether that rotation you described helped. Can you tell which (if any) of them did make a difference? I'm particularly wondering about the triptans: what form were they in (pill, spray, injection) and did they help? Some of these things should have helped right away -- trudesha and triptans. The rest had no likelihood of helping if it was CH. I wouldn't be too quick to say that the Indomethacin eliminates hermicrania as a possibility: How much did you take, and for how long?
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Ah, that! Folks here grow theirs, or they locate a source. Can help you with the growing, but probably not with the sourcing.
Rivea corymbosa (RC) seeds are just as effective as psilocybin, and they are legal to buy and possess in most US states and many other locations. And there's no real trip involved. You might want to start there.
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If you mean info about how to use psilocybin, you should start by clicking on "New Users -- Please Read here First" within the blue banner at the top of every page. That's the basics. After that, it's asking questions.
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Here's an overview that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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The recommendation for CH is three doses, starting when a cycle begins. Two is for migraine.
This is from the Lilly/Emgality website (https://uspl.lilly.com/emgality/emgality.html#pi)
- Episodic cluster headache recommended dosage: 300 mg (administered as three consecutive injections of 100 mg each) at the onset of the cluster period, and then monthly until the end of the cluster period.
You still could get some relief, so it's worth trying, but it might not be a real test.Don't recall from your previous posts what you're doing for your CH. D3? Verapamil? Tried busting? Oxygen? Seems like prednisone would pretty surely get you some days of relief.-
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Generally, oxygen can be obtained in most major travel destinations. Check with your O2 provider because sometimes they can make arrangements. I guess the most common rental is a pretty unhelpful low-flow concentrator.
This site -- https://travelwithoxygen.com/travel-oxygen-portugal/ -- seems potentially helpful; and this one https://www.oxygenworldwide.com/en/where/countries/
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Nice!!!! This 2023 editorial in the journal of the International Headache Society seems relevant (and is an interesting short read): https://journals.sagepub.com/doi/full/10.1177/03331024231212451?utm_source=facebook&utm_medium=social&utm_campaign=ihead2024&utm_content=ap_23pupgtmxz&fbclid=IwAR2YiwAM_00DoSP7j_0PP_hP5zkFXsf5GMpQqLp_3842NNAa0Um0h0L45Dk#body-ref-bibr16-03331024231212451 Would it help with awareness if these "headaches" were actually described as what they are, deep brain disorders?
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There's info here that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
For your future reference -- the tooth extraction probably made things worse, because the anesthetic typically used for dental work (and other things), epinephrine, is a major CH trigger. You can see more about triggers in the file of that name in the ClusterBuster Files section (I think there's also a link to the Triggers file in the link I just gave you above).
Also for future reference, the search bar at the top of the page is a useful tool for information about some things. Seacrching capsaicin, for example, yields interesting results. (Search "oxygen" or "D3" would just be overwhelming.)
10 hours ago, Dany said:My definition of grateful sure has changed since the CH started.
Ain't that the truth!
10 hours ago, Dany said:I dream of remission, even for a month.
The D3 regimen, properly followed, just might do that for you. And there's also busting, of course.
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5 hours ago, Snowflake said:
I found that oxygen at 4litres per minute are aborting my attacks within 7 to 10 mins. If this is the case, does anyone out there think that those oxygen machines would or could help me? Instead of the tanks. Cos my breathing technique is that I wait for the bag to fill, then pull in the oxygen and hold it until the bag fills again. Then repeat. I find that's works great for me.
The thing about the oxygen machine (concentrator) is that they are not pure oxygen the way O2 from a tank is. Some room air gets mixed in, so you might not get the same results. As FunTimes says, probably no harm in trying.
I would suggest that if you are aborting in 7-10 minutes with the method you're using, you might be able to get a quicker abort with the more "standard" method using a higher flow rate of a deep inhale, holding it in your lungs for a couple of seconds, and then forcefully exhaling (rather than just holding the air as you wait for the bag to fill). But you've been at this for a while and maybe your method really is best for you.
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It does seem odd, but with CH, there's always a surprise.
Since you're new to this, you might get some benefit from reading this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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Wonderful news about the cessation!!!
We've discussed splitting your injections (if they're 6mg) at another thread.
Something to keep in mind at your Jefferson appointment is that there is a CH "lookalike" condition, hemicrania continua [HC], that is all-day head pain with occasional "exacerbations" into more severe pain. It doesn't seem highly likely that you have this (because I don't sense that your headaches are continuous), but maybe it's worth discussing, since there is actually a treatment for HC in taking the medication Indomethacin. HC is generally not fully responsive to oxygen or triptans. Some people have suggested that Indomethacin can also sometimes work for CH. It's a difficult medication for some people because the gastrointestinal side effects can be challenging. Of course, you are much better off if less harsh approaches, such as the D3 regimen, work for you.
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4 hours ago, Amholla3 said:
tried the oxymetazoline nasal spray with other abortive techniques (caffeine, 5 hour energy, chugging ice water, ice pack on head, ginger, etc) and have not had much success.
Is there a reason why you don't have oxygen or a triptan?
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Wish I could give you a good answer to the "why" part, and I suppose it's possible that your caffeine use was somehow keeping them at bay, but I don't think anyone knows the practical "whys" of how CH begins. I also don't know what to say about the pattern of your attacks, which is indeed unusual. As you say, your symptoms sound CHy, for sure, although 10-20 minutes is on the short side for attacks (but again, not completely unheard of).
Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period? Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)?
Since you're new to all this, you might take a look at this "overview" file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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There has been plenty of discussion of Dr. Shevel here, most of it quite harsh. For those who are new, here's a sample thread, with includes an extensive response from Dr. Shevel: https://clusterbusters.org/forums/topic/2898-dr-elliot-shevel/page/3/
Of course, Douglas Ward, you have no idea whether you have been "cured." We wish you well.
Even considering the resistance of conventional medicine to new ideas, it does seem quite surprising, doesn't it, that only one person in the world is practicing this "cure"?
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This is surely a dumb question . . . Do you mean the very top of your spine, at the back of your head, or the place at your shoulders where your neck begins? I ask because as I was imagining what you describe, I was thinking top of shoulders, in part because I was picturing this as another way to deal with all the muscle tightness around that area that CH creates.
Hot or cold just as good, eh?
I won't be able to try it, either, but I'm hoping someone does.
I'm sorry that I'm just coming to your threads (I was away for a while). It's an awful situation. I'm sorry. I'm not going to grill you about symptoms, but I do have to join with the others who have said it doesn't sound like CH, hardly at all (neither the symptoms you have mentioned nor the resistance to pharma nor even the diagnosis). Doesn't really sound like HC, either, but (again, you don't have to respond to this -- I'm sure you're tired of it) when you say in your other thread that you tried indomethacin, it is often true that indomethacin is not tried at high enough levels for long enough to really tell if it works.
I would consider trying busting, as others have suggested, if only to see if it might help, and also the vitamin D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/), which seems to help with many "headche" conditions, including CH.
The Basic Busting Process
1. Take a psychedelic substance every five days until attacks are stopped. This is sometimes called “dosing.” Typically, it will take roughly three doses five days apart to stop attacks, but it could take more or it could take less.
2. The typical substances used are mushrooms containing psilocybin, LSD, or seeds that contain the ingredient LSA. All of those substances are typically effective at treating CH, but people may experience different results with different substances.
Mushrooms - https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/
LSA Seeds - https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/
3. The basic idea is to take enough of the substance to effectively treat CH but make any “trip” experience as tolerable as possible. Some substances have less, or different, “trip” effects than others (seeds typically have virtually no trip associated with taking them), and people have different “trip” tolerances.
4. The right frame of mind is important for dosing. The issues in this regard are often referred to as “set and setting.”
5. No medication or other substance that might block the effectiveness of busting should be used for at least five days before any dose of psychedelics. The most typical “blocker” in this regard is triptans, such as Imitrex or Zomig, but there are others. Blockers are discussed in this file [https://clusterbusters.org/forums/topic/687-6-playing-well-together/
6. Dosing with psychedelics can cause what are called “slapbacks.” These are CH attacks that occur at different times than a person’s typical attacks, or are more severe, or both. Usually these occur on the first and second days after a dose. Not everyone gets them.
7. Many people bust to prevent future cycles (or a recurrence if they have chronic CH). That entails dosing at regular intervals when out of cycle. People use different dosing schedules for this, from once every couple of months to once every week or two; each person has to use trial and error to find the schedule that works best for them.
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I can only speak about the US here, but if you have an oxygen prescription, there many locations around the world where you can get oxygen using that same prescription (not needing a new prescription).
Depending on how long you are staying in a place, you could also probably set up a system there based on welding oxygen, bringing you mask and regulator with you.
If you are not doing the vitamin D3 regimen -- https://clusterbusters.org/forums/topic/1308-d3-regimen/ -- I would urge you to do that, because for many people it prevents attacks and/or cycles, and reduces the severity and duration of cycles.
Toward the end of this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- several things are listed that people use to stop or reduce the severity of attacks when they don't have oxygen.
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@Sbr, as far as I know, national Medicare has made O2 coverage optional for the regional Medicare offices. I don't know of a more recent policy statement (but maybe there is one). It has been my understanding that practically all of those regional offices are authorizing coverage. The legal language says, "[C]overage determinations will be made by the Medicare Administrative Contractors under section 1862(a)(1)(A) of the Social Security Act, as allowed and described in Chapter 1, Section 240.2 (Home Use of Oxygen), Subsection D, of Publication 100-03 of the NCD Manual." The Medicare Administrative Contractors [MACs] are listed here -- https://www.cms.gov/medicare/coding-billing/medicare-administrative-contractors-macs/who-are-macs -- and I suppose it might be feasible to call yours and ask.
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Prednisone Taper Protocol
in General Board
Posted
In the "Treatment of Cluster Headache" that document he created for the American Headache Society, Dr. Goadsby says "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach." That was a few years ago. The 2023 European Academy of Neurology treatment guidelines for CH, of which Goadsby was one of the authors, refer to "the use of at least 100 mg prednisone (or equivalent corticosteroid) given orally." (I can only see the abstract of this article so I don't know what the taper is.)
In a 2020 study, patients were given "100 mg oral prednisone for 5 days followed by tapering of 20 mg every 3 days," so that's 18 days. Another study in 2021 used that same protocol.
A comment on one of those studies mentioned "historical ambiguity about the optimal oral corticosteroid dosing regimen." But maybe the higher initial level and/or longer duration than a typical approach is what is being used now. As with many other treatments for CH (including busting), maybe the dosages creep up as people decide to throw more at this condition than they might otherwise have considered at first.
Sorry that busting isn't working for you this time!!!!! Have you considered switching substances (from MM to L or seeds, for example), which does seem to help many people?