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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!

So I’ve been dealing with…whatever I have…since I was 12. I’m 39 now. I’ve read through these forums before, as has my wife, who is now pushing for me to trying a dosing protocol. I’m writing this now at the start of an episode. the problem is, as I read everything about cluster experiences on here, I question whether it’s even what I have. I’ve been diagnosed with Clusters, but over the years that diagnosis has changed multiple times, with it most recently landing on Cluster again. What is challenging for me is that it feels like I haven’t seen another experience quite like mine on here. So, I write this hoping someone on here looks at it and goes “yup, your dr was 100%…that’s cluster” - from 1996-2020, I’d have maybe 1-2 episodes a year. Extreme pain, always in my left eye. Out of all the experiences I’ve had, only once has it ever been in my right eye. A constant stabbing pain, maybe every 30-60 seconds - pain typically worst at night, would last 1-2 days max, and typical experience landed me in the ER where I’d receive dilaudid, toradol and zophran. It would usually abort. Nothing else worked. Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?) -eventually, this cocktail slowly stopped working for an immediate abort, and the pain would return resulting in a subsequent trip to the ER. Usually still would only last about 1-3 days. -Feb 6, 2020, everything changed. I still don’t see any reason to believe I had contracted Covid, but suddenly my headaches were lasting 4-7 days. Constant pain, though not as intense as they’d been through my life. Began taking Celebrex. Similar in the fact that it attacked my left eye. I’d get maybe 4-5 days of relief and right back it came. -in working with multiple specialists, I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration. Shortly after, I began a low dose of Lamotrigine. We slowly saw some longer periods of relief between attacks. - after several trials, I eventually hit 200mg of Lamotrigine and had gone 8 months without anything. When I did get an attack, days 1-2 were minimal pain, but constant. Ibuprofen, Tylenol and Triptans were used. Days 3-5 became more difficult and sleeping through the night was nearly impossible. Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point. It would then wind down days 6-7. Total time, about 1 week. - I eventually sought to see if scaling back on Lamotrigine would allow me to escape some of the side effects (difficulty maintaining a healthy weight, brain fog, reaching for words and coming up empty, tripping over words). I reduced to 150 under the guidance of my doctor and immediate popped one. We worked back to 200mg, but I began hitting them almost once every 2-3 weeks. - I’m now on 250mg lamotrigine. I just made it 9 weeks and am starting an attack … day 2 and I know my nights are going to get difficult. I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on. moreover, I don’t even know if it’s truly what I have…clusters. The way they gradually increase in intensity and remain completely constant throughout those days. Every 30-60 seconds a thud or a stab inside my eyeball. Constant, even pushing through various pain meds. Increasing every day to a crescendo, before finally tapering to freedom. The anxiety waiting for the next one. Will it be a week? Or a month? Or finally a year? i have no known triggers…even after all these years … except maybe stress. Possibly dehydration, though I do my best to stay on top of that. does this frequency, and change in duration/intensity over time feel like a typical cluster progression during a lifetime? I don’t want to be concerned about a misdiagnosis before I begin thinking about dosing. I assume if I do try dosing, that staying on daily Lamotrigine would be okay since it isn’t a blocker. im sad, lonely and confused. I’m sure it’s cluster, but I just feel like you all talk about your experience differently. I just need to know I’m not crazy. Any kind acknowledgment one way or the other would go a long way … and I appreciate what you all are doing to try to improve the QoL for the others in this community.

Who is joining us at Clusterbusters 2nd U.K./European Conference? We will be meeting in the vibrant city of Glasgow, Scotland for a weekend with speakers including neurologists, patients, and caregivers. There will be safe rooms, treatment workshops, demonstrations, and the opportunity to connect with the cluster community in person. We hope to see you there! Register today! https://cbglasgow2024.planningpod.com/

Thank you!

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.

Not how to use but how to get it?