CHfather

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?

A good reminder. Thank you.

@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.

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/

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.

i know one

@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.

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?

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.

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.

Here's an overview that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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.

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/

Also ... 20 Facts brochure 8-24-13.pdf Living with CH - 8.5x11 - 9-15-14[2].pdf

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?