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Everything posted by BoscoPiko
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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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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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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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Odd.... I seriously had this song in my mind seconds after my post!
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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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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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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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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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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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Building anti-inflammatory regimen from products available at iHerb ?
BoscoPiko replied to Tony Only's topic in General Board
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! -
Love it!
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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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I know!
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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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Also... Thank you Spiny!!
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I did talk to ××× and it turns out that it's not all gloom. I am taking vitamin k and all other Co factors I can't take benadryl as oddly enough I'm allergic to it... I am taking quercetin instead. My verapamil is the ER and I do often think of weenie off the toprimax as no one likes constantly double typing words etc...I need to get more labs done for calcium levels etc.. I'm going full keto and drinking tons of water to flush the extra D out for now ..
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Hi fern, Sorry you had a bad hit. Do you have anything to help you through an attack? 02? If you have been diagnosed with CH and sometimes even migraine, seems that you should be able to talk your Dr. into a script for oxygen. A little searching around on here about o2 and the proper mask types will prove helpful as well.
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Square one.
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Well shoot, Guess I am not resistant... Email from Grassroots... Dear Rachel, Your Vitamin D serum level based on your recent test with us is 100 ng/ml or higher. We do not currently have any data to support any additional health benefit of having a level of 100 ng/ml or above. The recommended serum level range, per our Scientists' Call to Action, is 40-60 ng/ml (100-150 nmol/L) for best overall health. It is important to note that vitamin D related toxicity has been observed at levels of 200 ng/ml (500 nmol/L) and higher per J. Hathcock, Am J. Clin Nutr. 2007;85:6-18. You may choose to consult with your health care provider to discuss your results. Thank you for your participation in the D*action project! Sunnily Yours, Carole A Baggerly, Director GrassrootsHealth A Public Health Promotion Organization Moving Research into Practice
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Building anti-inflammatory regimen from products available at iHerb ?
BoscoPiko replied to Tony Only's topic in General Board
Hi Tony, I don't know much about what you may, or may not have access to in Finland, but I suppose I got lucky and when I was first getting struck and reached out to a friend that knew an apothecary and she allowed me to use her account to access a site called Fullscript.com they have very high quality supplements for the most part, (you do have to be a pharmacist/apothecary to order from the site). Maybe you can reach out to her as well and see if she may accommodate you? Her website can be found by Googling Two Poppies Apothecary. She also makes all kinds of teas, ointments etc. Not sure if this will do any good but maybe? -
Thank you so much Batch! I'm on it! I should have my D3 results any day now from grass roots, they emailed me and said they were sent to the lab on the 7th and that it takes 10 days from then. I am somewhat on Keto but not that hard core so I'll step it up and yes the fire has been a bad issue. I'll print this out or copy and paste it and follow the protocol. Thank you so much for all the details!!