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BoscoPiko

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Posts posted by BoscoPiko

  1. Hi Chris,

    I don't know of any specific to CH but I know there have been some posts on here with folks attempting to create one and I think one other that had successfully created one. In the very beginning of my joy ride when being told I had migraine, I used an app called migraine buddy which was good for tracking dates, medications and pain scale but I soon got tired of it and switched to a self created excel log which I also tired of at some point in my journey. I guess I just felt like looking back at all the bangers made me depressed which I was already really good at doing especially when in a cycle which seemed to be the time I was most apt to visit the log. Anyhow, tracking can be a good thing especially if you are trying to gauge your next doomsday and get in front of it..  Lastly you can use the search bar at the top of each forum page and plug in key words like App and a bunch of past discussions will come up for you to review. 

    • Like 1
  2. Suppose I'm special as all I did was stand up from the darn couch to let my Abby doo inside (best dog in the universe), turned the handle and Shazam! Shocked to my very core, nearly thought I somehow got an electric shock but yeah me.. no such luck. I'm sure there are many reasons one is afflicted with the fluker bunny and I sure would enjoy more methods  to rid ones self as apposed to why. At the same time I understand how the why plays into the rid as far as treatments go. That being said, I'm darn sure sending my list to Santa this year and hope he checks the flipin thing twice!! Keep on being the coolest kids in town!! Admiration to all of you CH survivors!

    • Like 2
  3. Hi there,

    In my experience with the D3 reg the magnesium has been the culprit for praying to the porcelain god from the wrong end.<_< You could try taking it at bed time after eating or start out with a lower dose of the mag and work your way up. You can also try switching the type of magnesium you are using (not sure what type you are currently taking) but typically magnesium glycinate is the easiest on the stomach.  

    • Like 1
  4. On 11/22/2024 at 4:29 PM, Bejeeber said:

    This part looks good:

    • Step 6: The body is returned to the family for burial or cremation and related ceremonies.

    ....because cremation is my one last chance for having a smoking hot body.

    OMG Jeeb!! Lord in Heaven please let my chrispified remains look better than Jeebs in his neon speedo! In your precious name amen!! LOL!!! Thanks to CHF your remains will most certainly have neon green specks of lycra mixed in with your ashes...!!! XO!

    • Haha 2
  5. 41 minutes ago, jon019 said:

    ...any news on son danny boy...anyone?

    He took a hike for now.. Suppose he got the drift of things at least I hope . @spiny worked him over pretty good so maybe that did the trick? It was pretty scary looking him up and seeing all the accolades! Sad that someone would want to capitalize on such a misfortune but nothing surprises me these days...

  6. On 11/10/2024 at 12:30 PM, aaw96 said:

    right side of my head, stemming down into my eye socket (feeling like it’s being pulled back into my head) and into my jaw. After I have an attack which is now at least 15 times a day and lasts at minimum an hour to 8 hours at a time, my head feels bruised. Brushing my hair causes a headache,

    CHF beat me to a similar response that I meant to send yesterday....The one sided (lateral pain) and eye pressure fit the mold for the most part. The jaw and scalp pain do sound a bit different and remind me  of something like Temporal arteritis or maybe Occipital neuralgia. With Temporal arteritis-(inflammation of the arteries in the head and neck) most experience symptoms like a severe headache on one side of the head, tenderness when touching the scalp, fatigue, jaw pain, and vision impairment. The above questions posed by CHF should be pondered and answered in an effort to narrow down the possible affliction (not that our opinions should be taken as a diagnosis). I completely second the recommendation of starting the D3 reg regardless!  I really hope you get some definitive answers and find some relief soon!!!  

    • Like 1
  7. Well trying to express my gratitude for those before me and those involved with starting this site would surely fall short! My words may 2, but trying won't kill me I suppose. Thank you 2 all of the pioneers that understood the need for a place like CB,  thank you for compiling experiences into a haven for folks like me, thank you for caring beyond monetary gain, thank you for having the insights to recognize the need!:wub:

    • Like 4
  8. Lol jeebs I'm super serious! Grind, soak gag and choak over here.. it is odd that so many of us are same timing it.. I have upped everything so much that my tummy hates me! Uff.. the porcelain God has manifested its self and seems to think i should pray from both ends:o This 2 shall pass. In the famous words of @Dallas Denny...ONWARD!!

    • Like 2
  9. 22 minutes ago, Shaun brearley said:

    Oh dear that's not good @BoscoPiko, hope you don't go into full cycle, I'm guessing you have everything needed to bust before the bunny clambers out from under his rock, I was stupid and let my arsenal go dry as wasn't expecting to get hit yet, 

    Already started trying.. I have all crossables crossed that you get out of cycle and I don't go in!!!

  10. Hey Matthew @Matthew Funk, people on here might be able to help a bit more if we knew your script. If you have some stigma with regard to revealing it that's ok 2. There are many migraine meds that get scripted to us cluster heads (typical) but not so helpful unfortunately.  I am also going through a rough patch with my CH and utilize a few different methods of preventatives. Have you done any research on the D3 protocol? Or the "Full Monty" D3 reg ?  Both have pretty good results. Did you ever speak to your Dr. about O2 as an abort? It's important that you do as it could really help. Lastly, please read the new users banner as that may help you immensely as well.  Feel free to ask and ask again if need be. I  hope you get through this relatively unscathed. Your not alone here.

    • Like 1
  11. On 9/20/2024 at 1:21 PM, Matthew Funk said:

    Without hesitation he prescribed me antidepressants. Is that a thing?

    Well....many antidepressants have been sister medications for migraine and Ch. You did not specify the medication/antidepressants scripted but most are not effective for CH. Your doc should have first and foremost scripted oxygen as an abortive then maybe verapamil.. which currently is the so called gold standard of treatments not that it means much in the way of CH. The D3 regimen should be looked into as it has helped many more than verapamil..

    • Like 1
  12. I sure hope no one else has a suicide plan! Life with CH can be immensely difficult at times, but life between the clusters is just 2 special to give up on. @lp3 to make sure I answer your question, no I don't have a suicide plan but in the beginning of my CH (prior to finding CB), I was definitely guilty of thinking about it. I know you have been on here for quite some time, but I don't think you post all that often (which is absolutely ok). It's just that I wonder, if none of the things you mentioned not wanting to hear about don't work at all for you if maybe you haven't been properly diagnosed?  Maybe try and see a different Doc or better yet a headache specialist. When is the last time you spoke to a Dr. about what you’re going through? I know you’re not looking for advice but that is pretty much what we do here (try and help). In a way I think maybe you are looking for help because how would it change anything for you to know someone else had a plan?  Please excuse the ramble, I just hate to see/hear of a fellow sufferer being in such a bad way. If you change your mind and do want to talk about possible methods that could help, we are here!

    • Like 3
  13. 3 hours ago, EllieM said:

    My 38 yo daughter gave birth 6 weeks ago. She has been having CH the past few weeks.

    No meds as she is nursing. May have to stop. Wondering if birth control pills may help. 
    Her on/ gyne referred her to a neurologist but there is a long wait.
     

    thanks. 

    Hi Ellie,

    Unfortunately I don't think BC will help. I was put on them in the very beginning when they misdiagnosed me with migraine and they did not help. I don't know if you can take supplements (vitamines) when breastfeeding but if you can a good start would be the D3 regimen.   

  14. I have to admit I was a bit confused as to what the ask of welding companies was 2. If you are bringing a tank to be filled with welding O2 and that is the ask, then the problem shouldn't exist. If bringing with the ask of medical grage O2 (virtually one in the same, medical tends to be slightly more pure at 99.5ish while welding is 93 to 95%) then I understand. So first question is what are you asking of the welding companies, medical grade or welding? If asking for medical, I suggest you just ask for regular welding O2. If in fact no welding companies will fill your tanks (seems unlikely) then it's time to start in on your Doc for a script!

    • Like 1
  15. Hi Erin,

    I think anyone that suffers with an extreme headache condition not only belongs here, but can and will benefit from being here. I have read many a post from those with both HC and PH. Some have benefited from CH methods of maintaining pain free time as well as experienced a community of folks that understand pain in a way that non sufferers just can't comprehend. Sometimes it helps just to know you're not alone in your pain..

    • Like 4
  16. Hey Jeeb! Yes indeed this is an old one and it's kinda cool in a way to see how clueless I was to the games of the bunny:lol: It sucks that you are getting spiked!! As the years went on I have definitely changed my view of the "spike out's". Initially I almost got convinced that I could ignore them and not dose with something, but not so much anymore. Now I have sort of shifted to ignoring shadows but scrabbling to dose, dose dose if spiked!   I would say it's time for some funny movies, snacks and possibly @Shaun brearley style neurotic house cleaning:D

    • Haha 1
  17. Hi Billie,

    So sorry to hear that your going through what throughly sounds like a terrible cycle:mellow: If it makes any difference it really does sound like CH to me. Anyhow I wanted to mention that you could always start the D3 reg in the meantime which has really worked well for many of us. The upside to the D3 reg is that all the supplements are easy to obtain and overall quite good for you and your immune system. I have attached the latest info on getting started for you. I hope you get some definitive information from your upcoming appointment.   Hang in there!!!

    Quick Start Guide - Sept 2023 (1).pdf

    • Like 1
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