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Year 23 here but life is better now. GL on your journey NRay, this is the best place to be!
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Welcome to the community Nick! Unfortunately, there aren't any answers to your questions that are set in stone! However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal. The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly! And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs! Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum! Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!! Read and ask questions! Be well! Dallas Denny
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Hello, my name is Nick. I started my first cycle June 13th 2020. The first cycle started in June and lasted 24 days the attacks came at 9pm every other day for the first week and then they came every day for the last seven days of the cycle. I have been dx with episodic intractable cluster headaches. I am pain free at this time but want to know if anyone has any information about the onset of their next cycle and was there a difference in the length and duration of the next cycles that come or could it be just one cycle and then stop forever or is this just the beginning of a life long journey. Any replies would be appreciated and I am ok with bad news so too speak there is no need for false hope is all I’m saying thanks again.
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2020 Patient Conference in Chicago/Rosemont Discount
igdc replied to eileenbunny's topic in Advocacy, Events and Conferences
How do I pay for a spot at the 2020 virtual conference? I registered back when you were asking about preferences... but I've never paid (I think?). When I try to re-register or find a payment option, it says that I'm already registered. Thanks. -
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Hey Siegfried, A vitamin D3 level of 85 ng/mL only helps a little over 50% of CHers prevent their CH. The rest need higher 25(OH)D3 serum concentrations up to 180 ng/mL as illustrated in the normal distribution chart of 25(OH)D3 labs reported by 257 CHers who reported a favorable response to vitamin D3 in the online survey. Granted, this data is from cluster headache sufferers not people diagnosed with hemicrania continua (HC). That said, there is ample evidence that HC shares most of the same pathophysiology as CH which means it should respond to the anti-inflammatory regimen with therapeutic doses of vitamin D3. I've worked with two HC sufferers who responded to the anti-inflammatory regimen. Both took the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 at one 50,000 IU capsule/day for at least two weeks before experiencing a significant and lasting reduction in the severity of their HC. They also took the Methyl Folate + vitamin B complex, which like the Bio-Tech D3-50 has a higher bioequivalence. As you've already noticed, indomethacin is hard on the stomach and GI tract due to bleeds. If you do continue taking it, experienced headache specialists familiar with indomethacin side effects suggest acid-suppression medicine due to this gastrointestinal side effect. Take care and please keep us posted. V/R, Batch
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It is an analogue of ketamine. As with everything new and especially off label, there are many variables and there is really know way to know. Getting it and having enough would be pretty significant hurdles. The packaging wants the person to be on an antidepressant as well. I think it would be hard to find a willing prescriber and an insurance company willing to go along
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igdc, this is a kind of guide to the treatment options we're most familiar with. Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. Do not underestimate the potential power of busting!!!!! It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of each page.
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igdc I keep a log book of every cluster I get with how long and what I did to abort each one. It does help me because things change and what is working today may not work for me next week. I can go back and see what I did to get out of a funk the last time. I am chronic so I do not have any cycles that give me any length of pain free days but I do have cycles that ramp up from time to time. Spring time usually beats me up followed by summer when it is hot out around here.
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Actually yes, it comes right on schedule on the Equinox. It helps me to prepare knowing that too.Kind of 'classic; isn't it? To cover all cycles, I should say the week of the Equinox.That covers them all.
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@spiny, Is it really that exact, to the day? I think my first was September 26th. A migraine (for which I'm also chronic) or jaw pain following a replaced filling, I thought. I traveled for work, did alright with headaches here and there... and by the middle of October, it was full-blown terrible. Do I need to keep a calendar to map patterns for future years? And yes, it does help me to know that I have a good doctor whose treatments seemed to help... but even then, it takes time. And I suppose there's no way to know if it would work again. Ack... scary. Thanks for the replies and wishing you both well.
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Yep, the fall is my time of year as well. Already been working on it.
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I definitely get the fear quotient. My cycle will begin on Sept. 21st. I make sure that I have my gear all lined up and ready to go. Plenty of O2 on hand! Also, I stay on the D3 Regimen. Are you doing that? It really does help many of us!! I up my D intake to 15,000 as opposed to the normal 10,000/day. In addition, I make sure that I follow a set sleep schedule. Get up the same time daily, no matter what. The better armed that I am, the less stress I have. If you bust, then do that in advance. Put that info on a closed board - Members Only - and you will get a lot of replies from those who rely on that. Then, just breath deep, decide you have done all that you can and move on with life. Good Luck!
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I just realized that fall is coming. Like air-sucked out of my chest bc a new cycle could be on the horizon. That's when my first cycle started (lasting about 4mos, if you don't count the one-offs that followed for a few mos). I have this sudden feeling of dread that this could begin at the end of September again. I have lots of painful ailments, but I don't tend to live in fear of the next one. (e.g., I know that I have other kidney stones w surgery in my future but meh, when it happens, it happens.) Realizing, though, that a new CH cycle could be weeks away just knocked me for a loop. How do you cope with the fear?
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fast acting nasal spray for suicidal people, just approved FDA, I hear its related to Ketamine, wonder if it would help CH.
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Hi meme All the best in these times, hope you dose went well and you can get back on track and be pain free again. Big hug, Geish
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I also have permanent miosis (pupil that does not come bigger when in the dark) on my right eye. I went to see an eye doctor several years ago because I was afraid I maybe have some tumor or something. What he did was drops of cocaine in the right eye. If everything is normal, the pupil should suddenly become very big.. what it did. So this took away my worries for something more serious. These autonomic symptoms are often weird.. like two days ago, I suddenly felt really unrest and my nose was running as I suddenly go a big cold... the typical symptoms when I am having attacks but absolutely no sign of a headache at all. After an hour or two everything came back to normal.
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meme, Sorry they're back, but glad to hear you already have a path to get pain free again. Do you have O2? Cheers on your dose today! PFW, J
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Hi memememe (nice nick) Here's how I explain the pain to people, might help clarify things with your partner. Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp. Then, have him double the pain level again. Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. Mox
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Good luck
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Good luck
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I don’t have much to add to the board except to say that after five nearly cluster-free blissful years (with a handful of smaller CH incidents here and there), the cycle is back on and last night had worst, most painful CH since 2015. First time that my partner saw me in full throes of pain and have found it hard to explain to him what I’m going through. Dosing has worked for me before and is what seemingly worked to keep me cluster-free for 5 years so I’m going to try again tomorrow and hope I’ll be back on track. Wish me luck.
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Hi jimmy's, Glad to hear your CH is mild. I don't think wellbutrin helps our CH, but I think quite a few of us take it for one thing or another. Tampa / St Pete here, Cheers, J
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I'm back. anybody live on the east coast of south florida. Also, I started taking wellbutrin as an aid to help me quit smoking but I found that this cycle has been very mild so far. Wonder if its just a mild cycle or is the wellbutrin helping? Anybody have any experience with this?
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Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick left in it? Not sure. Tonight I'm going to wait for the beast before medicating, just to see how fast it actually works. I probably won't update again unless something radical is noticed. I'll keep using it for the next couple weeks till its gone. Bottom line for me is, if insurance doesn't cover this it's a moot point. Sumatriptan is faster , cheaper and much more predictable, oxygen is a good backup. Considering the retail cost, I'm disappointed in my results so far.
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All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insurance doesn't cover it, at least partially, I won't be getting a refill. At that price point I can't justify the cost! If it accelerates my metabolism, I'm ok with that for the moment. I don't take verapamil as it did nothing for me and I already take atenolol (beta-blocker) for blood pressure. The beta-blocker increases weight gain, so an increased metabolism might offset that - it might also cause my BP to rise (I'll keep an eye on that). And that could explain the difficulty I had getting to sleep last night. I did ask my doctor about Emgality, the once a month injection. He didn't seem enthusiastic, but said he'd write it if this one didn't work out. (I suspect he had a sales guy in from BioHaven pushing Nurtec, but no one from Eli Lilly has been around to make such offers for Emgality. In any case, Emgality lists on GoodRx for $559 with a coupon. Still only going that route if insurance covers most of it.
