BoscoPiko
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Posts posted by BoscoPiko
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41 minutes ago, Titan32 said:
@BoscoPikoyeah, I had seen an article recommending 5 lpm before bed to help prevent a CH during the night but I think I will up it to 15 tonight plus melatonin and hope it works.
Fingers crossed for ya!
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8 minutes ago, Titan32 said:
I tried 5 lpm of oxygen for 15 minutes before sleeping, but didn't find that it helped
Hi Titan,
Sorry you're still getting hit. I am assuming that the 02 you tried was just to try and see if it would help you sleep/stay asleep without waking to a hit? You would need at least 15lpm if trying to abort. I typically start trying to abort at 25 then go down to 15 when I can't keep up any longer. Have you tried taking melatonin prior to going to bed? It has helped some on here if I recall correctly.
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Awesome news Shaun! So glad she got through the surgery!!!
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1 hour ago, Shaun brearley said:
Daughter doing so much better . Off all sedation hoping she wakes soon . Still got this massive op on her pelvis and hip which is going ahead tomorrow . Thanks for all you love and prayers
Sounds like the road is still long but I am so happy to hear some improvement! And yea what Bejeeber said I said!
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17 minutes ago, jon019 said:
because it also provides a distraction
This made me think of all the goofball things I do when being hit lol. Walk circles in the garrage, swing hands rotating them at the wrist like im strumming a guitar, talk to it like "it" has a conscious "for f@c#'! Sake can you just stop... Of course none of this works but it does give the illusion to anyone within sight that I'm bat shit crazy and most likely not a good idea to approach.. oh and gives me a little cardio and DISTRACTION. I never have learned how to sit still through it, I suppose I have yet to find my inner zen of calm
@Titan32 I'm happy you got so much feedback on here and from some really great pain experienced/CH knowledgeable people and hope to hear some positive progress feedback from you soon. Take care!
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Well there ya go the most awesome @Bejeeber sent you what you need to start the D3. I would start it straight away..
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28 minutes ago, Titan32 said:
Should I only take one if absolutely needed
I think it's an individual thing (not everyone has a bad experience) you will have to monitor the personal effect it has on you and your cycle. I won't touch it due to it drawing out a past cycle of normally 3 months to just short of 5 months. The D3 regimen has made a huge difference in my ability to stay pain free for longer durations as well as tampering down the intensity when I do get hit. I'll have to find the link and send it to you If someone dosen't beat me to it. I'm passenger rt now headed to check on my mare but I'll check back here when I get back to make sure someone sends you the link.
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Well shoot.. Sorry your here but glad you found this site. There is some correlation to sleep, circadian rhythm, biological clock etc. I don't know enough about that but here is a copy and paste of a write up on it:
Discussion
Cluster headache attacks are believed to be modulated in the hypothalamus; moreover, the severe pain and typical autonomic cranial features associated with cluster headache are caused by abnormal activity of the trigeminal-autonomic reflex. The temporal pattern of cluster headache attacks suggests involvement of the biological clock, and the seasonal pattern is influenced by the number of daylight hours. Although sleep is often reported as a trigger for cluster headache attacks, to date no clear correlation has been established between these attacks and sleep stage.Conclusions
We hypothesize that light, sleep, and the biological clock can change the brain’s state, thereby lowering the threshold for activating the trigeminal-autonomic reflex, resulting in a cluster headache attack. Understanding the mechanisms that contribute to the daily and seasonal fluctuations in cluster headache attacks may provide new therapeutic targets.Anyhow were you doing anything to prevent CH when you were getting 3 years off? Are you on any preventative medication now? Many on here get nocturnal attacks and keep something like a red bull or 5 hour energy shot close by so they can down it and get straight to the o2 (for some reason the caffeine helps the o2 work faster) and most are able to get right back to sleep. I am thinking by the way you wrote "took" immitrex that you have it in pill form which can be somewhat slow acting verses injection. I am not suggesting that you use the immitrex that often as it has been known to cause extended cycles in some (myself included). I'm sorry you feel down and alone and I completely understand the feeling but do try and keep your chin up, surf the site as there is a plethora of good information on here that can help you. Hopefully some of the real experts will chime in here with better information soon.
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What a bummer! Sorry she is dealing with this. Has she had her blood pressure checked lately? I'm not sure where but I recall reading something about foods with high salt levels causing headaches for folks with high blood pressure. Also what Mitch said makes sense since the water would likely help dilute prior and after consumption.. Sorry I cant be of more help.
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Wow that's horrific. A parents worst nightmare. I'm so sorry this has happened and have been praying everyday for her and your family to get through this. I'll continue to pray. Stay strong and know all your cluster buddies are pulling for you and yours!
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1 hour ago, jon019 said:
..good catch @CHfather...i blew right by that....
Uff sorry u guys! Was a silly brain glitch..
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On a positive note I'm feeling pretty good since my last rip. It's hard sometimes to ascertain what's doing what as far as helping.. I had previously posted that I felt a banger was imitate and so I increased my levels of a few supplements listed in the "Full Monty" and dosed with some seeds, felt clear the next day then a few days later got hit pretty good. Then upped my level of seeds that evening of the hit and well I'm clear again and have been tying vines to the rafters in the greenhouse.. go figure..
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36 minutes ago, CHfather said:
You mean the floater seeds, right?
Indeed.. not sure how I wrote that backwards as we have always floated eggs since childhood to check viability/freshness. I think my brain is still a bit scramled
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35 minutes ago, CHfather said:
You mean the floater seeds, right?
Oops!
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On a side note... I did a little experiment with the sinker seeds and tried to germinate them. I soaked them in a wet paper towel over night and then stuck them in some little seed starter pellets. It's been well over a week and not a single one sprouted so I am assuming we can take away that they do not contain the needed substance.
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9 hours ago, Bejeeber said:
walloped the cluster bunny!
I'm sure hoping so! All that seed strangeness would be worth it if that's the case. I am unsure how to even explain what they made me feel like... It was somewhat like a mix of tipsy woozy mixed with anxt? A few other times that I have taken them (smaller dose) I have experienced a bit of restless sleep but that's really all except for the time I took them on a somewhat empty tummy and got a pretty upset stomach. Anyhow when I am in a cycle I've only ever gone two days without an attack so fingers and toe's crossed!
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1 hour ago, Bejeeber said:
With the usual tremendous amounts of cringing and bracing for it, I ask if there is any status update @BoscoPiko on the cluster bunny's recent unwelcome antics?
Honestly jeebs I had an oddly off experience with the seeds.. I groud up about 80 float tested seeds that attack evening and was so exhausted after a 4 in a half hour hit that I took the seeds and was asleep by 7:30. I then, according to my husband woke by 9pm and was out of it.. I had to take 3 super hot showers just to sleep and get back to normal.. I managed and am three days without a hit as of now so I'm not sure whats going on or what's working but something is.. ? I was and am so sad for Shaun that I haven't been able to think straight..odd how quickly the heart expands..
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1 minute ago, Shaun brearley said:
Don't won't any1 to think I've just vanished ,or forgot them
I won't be around for a bit could be for a long bit , my daughter has been involved in a accident and is on life support . I'm normally pretty active on this forum and I don't won't any of my buddy's, ie bej , spiny, Bosco or CHfather or Jono to think I've just disappeared. But back when I can .
Love to all , keep pain free
Oh man @Shaun brearley so sorry to hear about your daughter! Sending prayers for a full recovery!!
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2 minutes ago, Bejeeber said:
I wouldn't classify that as a long winded rant at all. I would definitely classify it as distressing to hear of an official beast revisit like that. I've seen the decreased intensity such as you're reporting attributed to both the D3 regimen and busting.
4 hours so far and still going - yikes you really get stuck with the longggg ones.
And yep I too would be inclined to blame the fact you had to wait to get on the O2 this time for the current O2/abort resistance.
Kind of a ripoff that you didn't get your usual warning sign - like broke neck - before the attack, but I know you've grown accustomed to how the cluster bunny is the ultimate ripoff artist, notorious for throwing these diabolical sort of curve balls.
Best of results to you with tonight's seeds bust - NO SLAP BACKS ALLOWED!! (there will be enough fireworks tomorrow!).
Lol thanks Jeeb. Even though I didn't get my usual warning I was somewhat expecting it so its ok ya know.. I have more to work with now than I ever have in the past so that's a super positive thing. Sure did kill my greenhouse tinkering fun for the day. Could be worse and all of us cluster heads know that! I'll get through this just like we all do.. won't be fun but at least I know I'm not alone!
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Well in about a week I would have been CH free for 9 months. That's a huge accomplishment for me seeings that I've been pretending it's Easter with visits from the cluster bunny every 4 or so months... I did not expect all this fun to go away for good so I am not disappointed. This one must have been really itching to get out and take hold because I am now 4 hours in and can't seem to get the o2 to work (went through one tank so far today) trying all sorts of breathing techniques. Anyhow I of course had to be 20 miles from home with no o2 in the truck when it hit so I had to wait to get on it and that may be why I can't get it to work this time. I got full on broke neck within an hour of the spike festivities which is diffrent as that usually happens for me a few days prior. On a positive note I am functioning and writing this through the hits meaning that even though this sucks some ugly ass it's been worse intensity wise in the past. I am assuming I owe this more mild version to the D3 regimen. I suppose I'll make this a seed night and see if I can bust it as I've only ever used it as a shadow killer... little scared of the slapbacks I have read about on here but I've got to see if I can make it work prior to this wedding I have to go 2. Anyhow if you read all this your a champ as this was a long winded rant!
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18 hours ago, SCiMMiA said:
describing what I feel but it is more like a constant pressure behind and around the eye
This part sounds to me like a tension headache but the duration is still off.. most tension headaches last around 2 hours or so. I have had some pretty lengthy CH attacks (longest I remember was almost 6/hrs.). The other part where you say you lay down and wiggle around until you can fall asleep is also a bit different as a lot of folks with CH can't handle laying down and most can never fall asleep exhausted or not. Instead we pace, kick out at each spike, curse a lot and of course rock back and forth. If the pressure you speak of is the sort that leads you to believe that at any moment you may be holding your left eyeball in the palm of your hand then you may be suffering a CH attack. I am not saying it's not CH and am most certainly not qualified to diagnose squat, but the way you describe it sounds a little different. Sounds like some nasty relative of CH though... The previous responses have pretty much all the info you need to start trying to get this issue under control and I most definitely second the D3 regimen as it can't really hurt to pump yourself full of good vitamins. The oxygen is also something worth trying and has been scripted to some with migraine (my sister had a bad eye that caused her terrible migraine and they gave her oxygen) eventually the eye had to be removed as it was so cataract ridden it couldn't be saved but she didn't have to be diagnosed with CH to get oxygen. I sure hope you get this sorted out! Wishing you some pain free days!
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30 minutes ago, Rod H said:
Listen to your body and mind.
Great advice!
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11 hours ago, Moona said:
as long as i follow a strict sleep schedule.
I have found the sleep schedule to be very important in managing my CH as well, like you said sometimes it is not always possible to hit the sack by 9 so other prevents like the D3 regimen are supper important. I have never tapered off the verapamil even though in reality I don't believe it has ever stopped a cycle for me, but has cut back the amount of attacks when in a cycle. I would think you would want to check your D levels prior to trying to taper off the verapamil. If you did not do a loading dose for the past week you may not have reached the level needed to keep the CH under control if you were deficient to begin with. I'm not sure about the tapering down but I was on propanol prior to the verapamil and had to taper off of the propanol for about 2 weeks prior to starting the verapamil.
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9 hours ago, Bejeeber said:
A rattler in the greenhouse!!??
Now THAT is one decidedly unwelcome visitor - wow, what a way to turn those good vibes bad in a jiffy. They'll be all the way back to good toot sweet though.
Seriously! Took the Zen rt out of the place... But we figured the only way it could have gotten in was through the sliding barn door because there are/were gaps under it and on the sides. We sealed it up and I'll be back to playing around in there today. Snakes gotta live somewhere 2 but I would prefer them not to shack up in my greenhouse... I upped my levels of the supplements listed by Batch last night before bed and downed some battery acid snot and this morning the shadows are almost gone so that somewhat tells me that my levels were 2 low and that I need to stick to the every 2-weeks of dosing while being so close to my normal cycle.. I think that because I have had shadows pretty much daily when out of cycle in the past that I have allowed myself to dismiss the warning of them unless they are really intense... So I learned something new... Anyhow I didn't mean to hijack this thread it just sorta morphed from a question to me whining
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Made it Here
in General Board
Posted
Well I made it here to the wedding location with minor spikes to the left (cluster side is the rt.) Spikes to the left mean a doozy is imminent. I'm 5 hours from home and have 02 with me as well as some nasal spray which I won't use as the spray is a triptan. I hate being here as it's my home town and the memories flood. Wish I could say better ones outweigh the bad but they don't. I am on the coast and this place is beautiful just wish my memories of being here matched...so much of my life started here ..