BoscoPiko
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Posts posted by BoscoPiko
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Hello all,
I'm not sure if I'm out of this everlasting gobstopper of a cycle (been getting one week off only) in between bangs. I am just curious if anyone else is constantly shadowing? I feel like I have constant pain on my rt temple (pressure, bulging veins, noticeable discomfort) even when I've had a 6 month break? Just wondering if anyone else deals with this?
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1 hour ago, BoscoPiko said:
Thank you so much! I tend to get sad when I can't seem to break away so I write. Would love to hear you sing!
You are spot on. I do best when in a tad bit of remission but am inspired by pain...
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21 minutes ago, jon019 said:
...i hear something like this or a Southern street fruit seller in your "lyrics"...
I love how you are able to relate most back to music cool skill. What you just posted on here is something I've (believe it or not) listened to with my pop. He is an old hippy with a mind like nothing else. He made me listen to Simon and Garfunkel, Dr. Hook, Fleetwood, Floyd, Darryl Hall and Oats, Mr. mercury and the list could go on for days. Yes I'll take all smiles. Your singing voice included...
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8 minutes ago, jon019 said:
....WOW...that is way cool...it's lyrical, i was singing it!
Thank you so much! I tend to get sad when I can't seem to break away so I write. Would love to hear you sing!
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Brain for sale
Just slightly used
Cash or best offer
Trade-ins welcome too
My cranium seems to hate me
But it may like you?
A Few malfunctions
That must be disclosed
It thunders and lightnings
Loves to impose
This brain that I have
Is a drain
It’s a drag
It keeps me from sleeping
Or enjoying life too
But hey, who knows it might just like you?
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53 minutes ago, CHfather said:
On the other hand . . . . this is from a 2010 study sponsored by ClusterBusters that collected data from more than 1100 people with CH. (Rozen and Fishman, "Cluster Headache in the United States of America.") The authors wrote, "The circadian periodicity of cluster headache is present but is not as common in the population as previously thought."
"Months of the year that cluster headache cycles would start.
In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin. By percentages, the months of October (26%), September (21%), April (21%), March (20%), and November (20%) were the most likely for cluster headache sufferers to start a cycle. The remainder of the months of the year were evenly distributed with 11-13% stating their headaches cycles would start during these particular months. The lowest percentage was noted for the month of June at 10%."
This was a very good bit of information. I've been trying to wrap my head around the "circadian" "diurnal" meaning as associated with CH. Uff you smart people.. I am still so confused! I get the basics but??
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16 minutes ago, jon019 said:
....demon theme...
Ok that was flippin funny.. I've been spiking all day and depressed because I thought I was done, (out of cycle) and that just made me laugh HARD..
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59 minutes ago, Cloudy said:
i just wanted to say thank you to everyone who participated in the conference i learned alot and it was nice to meet other clusterheads
one thing that i thought was very odd is that the 2 people that i met in a chat room and i all started our cluster cycles on June 24....summer start? pollution from the fires? i have no idea but a very weird coincidence
I don't think it's odd anymore. I couldn't see from your profile where you are located but I am in (don't dis me) CA. I have had ash reining on my truck for months from the Caldor fire and have been stuck in cycle for 2 and a half months with one week off only in between attacks. I am newly diagnosed with CH and have only been surviving them for a bit over 2 + years now but this is the longest I've ever been stuck in a cycle (I usually get around 4 months off) longest duration off was almost 6 months. I've got 4 air purifiers running day and night and again today I'm spiking out.. Exactly one week off and the smoke blew into the valley today. I can say though that the D3 has made them manageable enough that I've been able to not use any abortive medicine. To start a cycle on the exact same day of the month is somewhat interesting however...
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5 minutes ago, jon019 said:
...yup, gimme shelter!
Odd.... I seriously had this song in my mind seconds after my post!
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5 minutes ago, jon019 said:
...i get it...there were times when an attack/cycle seemed so malevolent, intentional, designed and implacable that the thought of the beast as "entity" was nearly overwhelming. didn't wanna go there, but it served as a convenient anger sponge. eventually learned to direct the anger toward collecting the knowledge, tools and strategies for battling "the beast".....
Love the term "anger sponge". I seriously need a stash of those!! I must admit that I have often thought of CH as some sort of cruel punishment for something I did wrong.. So I suppose the thought of possession is not far from that...Maybe our minds just want so badly to believe that somehow, someway it's something other than a neurological un-curable issue. I find that I prefer the worm in the nose theory I read on here while poking around...Who knows, maybe one day a cure will be just a shot away...
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I sure act like I'm possessed during an attack sometimes LOL..Curse words randomly flying out of my mouth, odd leg jerks etc. However, I'm fully aware of what's going on so I would have to say no. Wish I was then it would be simple, we could all go get an exorcism and call it good;)
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4 hours ago, spiny said:
Quercetin. Those names that they tack onto meds are insane!! I get sick of looking them up all the time. And stupid spell check has NO idea and always flags them as wrong! Glare.......
Yep spell check has no idea...LOL
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So a quick search on the term you used for your type of attack is more of a symptom of a type of terrible migraine (wouldent wish it on anyone)! Partial paralization on one side of the body or the other accompanied by pins and lovely needles.. ouch!!!! Again I'm not of much help but holy hell don't want you to think you are alone that's for sure! You can message me any time you like. I'm pretty good about checking in on here of late. (I kinda like it here).
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25 minutes ago, Bejeeber said:
I too salute Spiny's bible dispensation above! I'll just emphasize a couple tidbits
- Doubly avoid alcohol - it is a HUGE trigger for so many.
- Holding an ice cube against roof of mouth while breathing freezing air from that blasting car air conditioner vent , until a soothing in comparison "ice cream headache" develops and CH disappears, has been an abort technique that has helped some, sometimes - if caught at onset.
- Lots of CHers have ditched the medical RX O2 in favor of welding O2 (which is reputedly the same stuff), available without prescription.
Ice cube on the roof of the mouth while breathing freezing air. Added to the the tool box!
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Hi Gemma,
I have cluster as well and yes, it's no bueno. I have never had one in the way you described. I suppose it could be quite possible to feel as if you can't move (maybe pain sensory over load)? I've only been dealing with cluster for a few years so I do not know as much about medicine as others on here but I have received some really good advise from asking.. I do know all about the lonely feeling that can accompany a cycle. As long as you have found this site (and you have) you are not alone. You can do searches in the forums and just poke around, lots of great info on here! Try and keep your chin up!
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3 hours ago, spiny said:
Hi Fern and welcome. Glad that you found us! You will find a lot of info in the blue banner above that says New Members....
Avoid MSG, alcohol, fermented foods etc. Eat clean. Msg can bring on one right quick for some.
Caffeine: In an Energy drink or shot, V Energy, or coffee. If you can hack the Energy shots, some say the taurine in them is helpful. Otherwise, any strong caffeine. Most want them ice cold. Slam it down - drink quickly, at the very start of a hit.
You can hyperventilate too and exhale with a crunch to get rid of the CO2 in your lungs. Many will suck in the cold air from an AC vent in the car. There are proponents of ice packs too.
A really hot bath - shallow - helps some by opening the blood vessels in the legs. I have sat in many a screaming hot bath. I just kept adding more and put a cold cloth on my head. Well, cold water type cold. Not ice!
Benadryl can help a lot too. Take only at night if it makes you too sleepy. Also, there is Melatonin in the 20-25mg amount. Do not take both at once! Try one, then when you know how it affects your balance, etc. Then you can add the other. Add the Melatonin 10mg to start. Or less.
If you get hit at night, then sleep in a recliner with your head above your heart. It will enable you to get up and hitting the caffeine, cold air, hot bath, whatever works for you. We are all different. Some get great relief from an ice cube held against the roof of the mouth on the CH side.
How about your experience so far? Share a bit so we can help you better.
I'm supper sorry you are going through this.. Spiny just gave you the Bible. Can you give us some background? We all tell eachother what meds. Etc. But if you are the private type I get that as well.
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On 9/23/2021 at 3:27 PM, BoscoPiko said:
Love it!
One day down. (Off the toprimax). feel like I should be on a program for whatever abusers.. no nothing new to report. I'm happy swam in the pool and and got the 500.mg. quercertin today.. never know if I spell that correctly.. anyhow I'm trying..you folks are the best..!
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46 minutes ago, Tony Only said:
Thanks @BoscoPiko
Personally I find the whole concept of us being forced to acquire our medication by ourselves repulsive, if it's psychedelics or vitamins. It just bugs me way more when we need to worry about the right quality or the kind of our medication, possible safety issues and when it comes to psychedelics not being able to even discuss our care and medication with anyone.
I am doing rather ok now with iHerb products and shall try to approach finnish research doctors that have some kind of knowledge about high dose Vitamin D so one day it could be easier for the future generations. Currently I can not afford pharmacy grade products so should I encounter any additional problems I will visit some nice trails in humid finnish forests
I understand the frustration and do not blame you for it one bit! Neat that you have the knowledge to go out into the forest to find some of what you may need for yourself. The cost of supplements is outrageous!
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10 minutes ago, jon019 said:
...my favorite online clusterhead sayings:
..."take what ya need and leave the rest"...
...."if you're not sure if the med is working...it's NOT!"
...."fuckit".....
Love it!
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48 minutes ago, spiny said:
Ok. I have to ask, is Bosco an Abyssinian? Appears to be at least partly, if not full!! So pretty.
I lost my Tonkinese last September. Age 20!
If you can bring yourself to ditch the Dopamax, I think that you will feel better. One thing comes to mind: Is It stopping the hits? NO? Then perhaps it is not for you. Many of us come to that realization after suffering for too long with a medication we thought was helping.
I have tried some things for too long thinking 'Well, it is not as bad as it was.' But did I really know that? Nope. Verap worked for me, until I went off one summer due to prodding from my dentist. Guess what? It never worked again!! I could only take 240mg/day due to low BP. So, upping it was not a option for me. As angry as I was , I later figured out that it would have soon failed anyway. And I felt like garbage. I was truly better off in the end without it.
Well, we aren't 'putting up with you', we have all been there and understand you and where you are!! Not the average person you meet on the street in that one respect. CH family.
Hey Spiny Yes! Mr. Bosco is indeed an Abby. He says thank you for the compliment
You are so correct (again) I already know that the Topamax is not helping so I just need to stop it already. Just caught on to why you were spelling it that way LOL. Thank you for once again being awesome! (Sorry about your kitty passing)! 20 Wow!
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Yes indeed, I have received so much helpful advice and information on here. I feel bad for any cluster head that has not found this site...Thank you all for putting up with me
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44 minutes ago, Bejeeber said:
Glad to see you're at least getting some truly stellar advice @BoscoPiko, and I know a lot of us fully endorse this sentiment:
And this is about as chock full of irony as it gets
:
I know!
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1 hour ago, jon019 said:
...to second what Spiny said. ER verap was totally useless for me at any dosage. many report similar. the pharmacy subbed it in for SA one time and panic ensued as "it doesn't work any more!". my dosage needed for low cycle was 480, 960+ for high cycle. found that timing doses to expected hit times was somewhat helpful.
...Topamax was useless and just made me dumb......some folks have reported that taking before bed reduces side effects during day and side effects lessen over time.
Would make sense as I have no evidence that it has ever kept me from a cycle, I do however believe it has cut down the amount of bangers per cycle. No real proof just speculation at this point. I've been desperate a few times an upped the verapamil while in cycle and it has never helped so maybe I need to talk to my neurologist about switching. I have a bad habit of holding on to fear, hence I have not let the stupid Topamax go. I am sure many have noticed my double words (one of my worst side effects from it) even when I go back and try and catch them, they slip by me. I suppose it's time to ween off the dummy drug... Thanks John
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2 hours ago, spiny said:
Bosco, I didn't see where you are taking the Vit K. Am I missing something?
You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there.
My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle. So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred.
Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right? Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head.
I understand your reluctance to abandon the Dopamax, since you feel that it is helping.
This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.
Also... Thank you Spiny!!
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Always Shadowing?
in General Board
Posted
Wow cool to know. I heard about the ginger just never knew you could get it in capsules..