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Everything posted by Bejeeber
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Yer not alone - I've become concerned about the absence of @jon019 as of late myself.
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Wow what a dramatic, positive response to the gabapentin, AKA neurontin. CONGRATS! Especially surprising/unusual is how it seems to have taken effect on the first day. Are you still only taking 600mg a day? My experience with gabapentin was it took a good many days to kick in, but when I got to a high dose, coinciding with a high ECH cycle, it cut the frequency of attacks in half. That in turn allowed me to abort all attacks as I rode the cycle out, so it was of real help (since that cycle, I have found vitamin L to have restored busting effectiveness for me, so no need to go back on the gabapentin). While you swear by it, some do swear at it. I get the impression it could be a drug that we find ourselves having especially widely varying individual responses to. When I was on it I could feel that I was on a drug, kind of buzzed-ish, but hard to describe. I kind of enjoyed it, but not like I wanted to stay on it forever. My appetite became unusually ravenous. According to sources including this from NIH (I've only skimmed it) "it is crucial to raise awareness of gabapentin as a potential cause of depression, aggressive behavior, and suicidal ideation" Suicidal ideation in bold print, because it is a bizarre potential side effect that others have noted here, sometimes referred to as a "reverse survival instinct", and can be experienced even without any co-occurring depression or other distress (!!!). I caution anyone on gabapentin to watch out for this, and to resolutely keep in mind it is the drug talking - set any such thoughts to a firm ignore!
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I'm going to credit the appendage crossings for your getting through the Red Bull Rehab toot sweet like that.
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When even Tylenol and ginger don't help, that's some strong withdrawal alright. I'd still hope you could recover relatively quickly following the upcoming cold turkey unpleasantries. All appendages crossed and knocking on wood.
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Count me as also sorry to hear of the dreaded high cycle @Rod H, but here's to your dog, and to that great, beastless retirement road trip.
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Clusterbusters 18th Annual Patient Conference
Bejeeber replied to eileenbunny's topic in Advocacy, Events and Conferences
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Hadn't seen this either til now. HIGHLY RECOMMENDED - thank you for bringing it to attention @Dallas Denny!
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Special in that I've allowed them to extract near all my $ via my incessant purchases.
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Here's an excerpt from a not-so-nice news email I had received from Amazon: http://g-ecx.images-amazon.com/images/G/01/e-mail/img14/kc/sp.gif Dear customer, In 2013, we launched AmazonSmile to make it easier for customers to support their favorite charities. However, after almost a decade, the program has not grown to create the impact that we had originally hoped. With so many eligible organizations—more than 1 million globally—our ability to have an impact was often spread too thin. We are writing to let you know that we plan to wind down AmazonSmile by February 20, 2023.
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I like it. That video link to Baba O'Riley isn't working for me (and maybe others in US), so here's one that might work better for those stateside:
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Eileen and Joe: Big appreciation for the advocacy for better psychedelic legislation, and the potential positive impact for those of us with this currently misleadingly named condition. @Tony Only, you'll definitely never catch me referring to a cluster attack as a 'headache'. Maybe we should consider adopting Finland's Horton thing over here. As long as it doesn't get confused with a popular and delightful Dr. Seuss character.
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1st Annual UK/EU Conference
Bejeeber replied to eileenbunny's topic in Advocacy, Events and Conferences
I think I heard a rumor that the US conference this fall could be held in Orlando, FL. Don't quote me on it though. That would still be a good maybe 4.5 - 5 hour nonstop trip for @BoscoPiko I imagine. -
1st Annual UK/EU Conference
Bejeeber replied to eileenbunny's topic in Advocacy, Events and Conferences
Ooh. @BoscoPiko and @kat_92 now that you're complete flight-a-holics, it should be safe to assume you'll be attending. Plus @kat_92 should have the deets for us all by now on best deals for cute luggage. -
Now look what you've done @BoscoPiko
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Escorting a dog with a leg cast outside in atmospheric river style flooding at 3am every night, and that's just for tip of iceberg starters? Wow, will you be overjoyed when the flooding clears and Abby heals - just hang on a bit longer! The best of results to you with tonight's seeds bust! I get random ear ringings year round, in or out of cycle, so, I got nuthin' to offer in that dept., sorry.
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Well this put a big, genuine smile on the big, genuine face this morning!
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I find this routine to be effective at times (I asked ChatGPT to spell out the details and it supplied this): The technique involves inhaling through your nose for a count of 4, holding your breath for a count of 7, and then exhaling through your mouth for a count of 8. This is repeated for several rounds, usually four to eight times, depending on your comfort level. The idea behind this technique is that by slowing down your breathing and focusing on your breath, you can reduce anxiety and promote relaxation. It has been popularized by Dr. Andrew Weil, a well-known integrative medicine physician. It's worth noting that while many people find this technique helpful, it may not work for everyone. If you have any medical conditions or concerns about your breathing, it's always a good idea to consult with your healthcare provider before trying any new relaxation techniques.
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You sure do! Large quantities of kudos to your GP!
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It sounds to me like your your cycle could be ending - unless you started on the verap recently enough that it might have only started kicking in 10 nights ago, in which case it is hard to tell, hard to know at this point. Sorry you've been hit with this, but glad at least you got diagnosed right away - that's rare! Typical. I do wish headache specialists would practice triage (maybe that isn't taught in headache specialist school? ), but from what I've seen, most or all do not. @Cindi you may have already noticed that if you hang about here some and read through stuff such as is found at the blue New Users - Read Here First banner above, there's a good chance you could prevent altogether any next cycle that might want to come a knockin'.
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“I have patients in our cohort and our clinic who say they go to neurologists with all the symptoms of cluster headache, and the neurologists say that ‘you can’t have cluster headache because you’re a woman,’ “Dr Belin said. The fact that this could still be occurring to this day is just so mind bogglingly far beyond negligent.
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I had the same 'shadows' thought as @CHfather, since what you're describing sounds like it might fit in that box. Saying that makes me feel like I'm a 'shadow boxer'. Wow that's such a groaner of a lowest-form-of-humor pun I hope the worldwide eye rolling it unleashes doesn't trigger any CH attacks.
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That was the sagest of advice as usual from @CHfather - certainly lots of us have armed ourselves with various combos of the above when in cycle and hitting the road. O2 E tanks have enjoyed some real popularity as vehicle companions. In a mid-shopping scenario like that, you might drop everything and down an energy shot while beelining it to the car with Sophie, where you'd be hitting the O2 ASAP. There was one clusterhead who was a patrol officer, driving in the car all day, who for many years had an E tank outfitted with a demand valve in the trunk at all times, and the way I remember it, he was consistently able to abort every single attack that tried to rear up whenever he was on duty.
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"all crossable extremities" - watch out, @BoscoPiko, that's another one of your contributions I'll likely be adopting use of.
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Rotate - that sounds fair! Best of results to you @BoscoPiko!