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Understood. Something I'm interested in, and you might find interesting too, is ketamine infusions, which we don't currently have a lot of collective experience with like we do with busting, but some very early prelim reports about it appear encouraging. In a case like yours I would hope it wouldn't conflict with employment restrictions.

...OXYGEN, OXYGEN, OXYGEN................................

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/

Hi my name is Chris and was recently diagnosed with cluster headaches. Before NY doctors appointment I was convinced I had an aneurysm or tumor. So thank God it turned out to be CH, never thought I'd say that, and am trying to figure out my path. My GP said h3 thought it was CH but referred me to a neurologist. Neurologist asked a bunch of questions and agreed it was CH. I've tried D3, loratidine, caffeine, praying, and sumatriptan. I still take D3, loratidine, have an emergency caffeine drink of 200mg in my room at all times, and sumatriptan. The sumatriptan seems to be the one that works. It takes me frim a 10 to 0 in about 5 to 10 minutes. I plan on asking for high flow oxygen at my next appt in a couple weeks. The N also gave me Depakote but I feel weird about that. Mushrooms aren't for me because I'm a federal employee and work for DoD. Do have federal BCBS though. Anyway that's my story so far thanks for listening. Good luck to you all.

Hi there! I’m encountering the same problem for my trip May 6. I may have a lead for you, DM me!

To note, I was diagnosed years ago, so that is another.

Thanks all!

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.

@TorontoCanada I can only recall one forum member from the NYC area and he hasn't been active here in several years!! If you're on Facebook, I know there are several folks from NYC in the "Cluster Headaches (Trigeminal Autonomic Cephalalgia)" group who may be able to lend some advice! Dallas Denny

Hey all, I'm set to travel by plane to NYC from Toronto, Canada on Wednesday of next week (April 24) and I've got nothing but dead ends trying to get Oxygen tank rentals. I'm only going to be there for a few days so was hoping for 2x D tanks and 2x E tanks. I just need the tanks, I have a regulator and mask I can bring with me. ANY LEADS???

i know one

Was reading a study that linked autoimmune disorders as higher in adhd people and biological siblings, curious if there may be a link to clusters? How many here know they have adhd or are pretty sure?

Understood

Hi Larry, While Bob and others greatly appreciated overflowing support that came from everywhere when we shared the news, I think it's best to respect Bob's privacy. Enough people in the community had concerns about his wellbeing that it made sense to share the news, to celebrate and lay questions to rest. Thanks!

Wowee, details? The world needs some good news and this is fan tastic! Larry

@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.

Hello, I have been dealing with Clusters for about 11 years now. The longest I have ever had one is 4 hours. Now I have had multiples in one day and my cycle that I am currently in started in November. Currently I take Verapamil, Depakote, Balcofen, Lithium, and Emgality. I use a Sumitriptan auto injector when I get a really bad one. The mild ones if caught quick enought will usually be taken care with oxygen. Are you seeing a board certified headache specialist? If not I highly recommend it.

Good catch CHF!

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?

Is this a constant pain with no pain free time at all? This has been reported by others as well Were you using the proper non rebreather mask and flow rate up around 25lps? Has happened to just about everyone on this site, We are all here to help you out at any time of day or night! Great place to vent. A good test that works for most of us is drink a beer- get a attack. When in cycle for episodic and any time for chronic. Some are lucky and can drink with no effect but it is still a good test. I does not matter if you get one a month or 5 a day, it all sucks and everyone has the right to talk about it. Spill your guts here and we will help clean up the mess

Just wanted to say that my heart goes out to you. This is a long and sometimes lonely road. @BoscoPiko knows a lot! There is also a lot of resources on this site and in the community. I know it can be hard to read through sometimes, perhaps there is someone who can help you read and organize all the protocols and experiences. That was really helpful for me b/c reading and being on the computer was really hard sometimes. I have found that meditation and learning to deescalate my fear cycle has been really helpful. There are some good resources / apps such as Balance (free for a year) and Curable (also has a lot of free resources). Those were, and continue to be helpful for me.

Welcome to the community @SeanSydney! Unfortunately, the OP posted this thread on the day he joined and hasn't visited the board since that day! Tell us about yourself and treatments you've tried and perhaps we can give you some guidance! Dallas Denny

Hey, I’m in Sydney. 36 year old male. Had CH since I was 10 years old. Are you still in Sydney and have you found a solution that suits you?

Gosh MagicAces, your post wrenched my heart for you. CH can be so different for everyone and is known to change over time in various ways. Your description of the attacks does indeed sound like CH to me and the fact that you have tried the indomethicine rules out the CH lookalike (HC). My CH started out very predictable, 3 month's starting in August but the predictability has gotten up and walked out on me this last year to the point of getting terrible one day attacks with over a month in between the next, then at times a weeks worth of daily attacks that at times have lasted from 6 to even 8 hours each. The stabbing in your eye is a pretty common CH symptom, my attacks are similar with the exception of the fact that my stabs are in my rt temple. I do get really bad pressure in my rt eye but the stabs come in the temple. I have also had some good and some bad experience with 02, sometimes depending on the breathing technique I use, I am able to abort but the last time I used it, I felt like it escalated the attack to the every 30 to 40 second stabs but truthfully it was most likely an odd coincidence but I am still left with fear of trying again. I did not see mention of you trying the D3 reg? If you haven't, it really is worth a try. I'm sorry your going through this and hope it passes soon!