Jump to content

BoscoPiko

Moderators
 View Profile  See their activity

  • Posts

    1,281

  • Joined

  • Last visited

  • Days Won

    68

 Content Type 

Posts posted by BoscoPiko

    Headache Treatment Protocol Update

    in General Board

    Posted

    8 hours ago, Violakid said:

    Hi @Violakidyou may have better results with regard to @xxx responding if you pm him or use the above method of mentioning him so that he at least receives a notification. I'm sorry you're having a rough time at the moment and if it were me I would increase my D3 during a hostile attack. I've had to stay at around 30,000 iu for a bit now to keep them at bay. prayres for you!

     

     

    Before I bust, is it even cluster?

    in General Board

    Posted

    Gosh MagicAces, your post wrenched my heart for you. CH can be so different for everyone and is known to change over time in various ways. Your description of the attacks does indeed sound like CH to me and the fact that you have tried the indomethicine rules out the CH lookalike (HC).  My CH started out very predictable, 3 month's starting in August but the predictability has gotten up and walked out on me this last year to the point of getting terrible one day attacks with over a month in between the next, then at times a weeks worth of daily attacks that at times have lasted from 6 to even 8 hours each. The stabbing in your eye is a pretty common CH symptom, my attacks are similar with the exception of the fact that my stabs are in my rt temple. I do get really bad pressure in my rt eye but the stabs come in the temple. I have also had some good and some bad experience with 02, sometimes depending on the breathing technique I use, I am able to abort but the last time I used it, I felt like it escalated the attack to the every 30 to 40 second stabs but truthfully it was most likely an odd coincidence but I am still left with fear of trying again. I did not see mention of you trying the D3 reg? If you haven't, it really is worth a try. I'm sorry your going through this and hope it passes soon!

    • Like 1

    Wouldn't it be nice...

    in General Board

    Posted

    Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this!

    • Like 2

    A few questions please.

    in General Board

    Posted

    On 3/7/2024 at 9:42 PM, Snowflake said:

    No I have been taking 50 000iu every single day

    Well.. I've never heard of death by D3 overdose but it would be a good idea to go get some labs done just to make sure your calcium levels are ok. I'm sorry your heart hurts and I know reliving the dreadful situation/reality is not exactly enticing or very palatable but it might really help to unload some of your inner turmoil/pain. Sending prayers your way.

    • Like 1

    capsaicin / apple cidar vinegar / breathing techniques

    in General Board

    Posted

    1 hour ago, Dany said:

    I've read that capsaicin cream can be helpful for CH, but I can't get it anywhere.

    Hi Dany,

    I have read on here of others that have used capsaicin (nasal spray) with an occasional positive report. I've never used it myself, but was able to find something similar on  iherb.com.

    1 hour ago, Dany said:

    I read that it can take 15-30 to get relief.

    You really should procure o2 as soon as possible as it is reported to be one of the best/cleanest ways to abort and attack. Many are able to abort is as little as 7 to 10 minutes. You will want to make sure that your setup includes a proper non-rebreather mask and regulator that allows for a minimum of 15LPM's. 

     

    1 hour ago, Dany said:

    I just started the vitamin program, though I'm only at 5,000 IUs of vitamin D daily (and the required combo of cal and mag) right now. 

    Glad to see that you started on the D3 reg. It sounds like you have been reading on here for a while so hopefully you are including all cofactors with the D3.  

    • Like 2

    A few questions please.

    in General Board

    Posted

    So sorry to hear of your loss. It seems to be common that folks do get hit directly after falling asleep when in a cycle. Not sure about getting hit due to being startled awake. 4LPM is very very low so if it's helping you to abort there is a possibility I suppose that an oxygenator may work for you. As for the D3 I am assuming you are taking one 50,000 IU per week? If that's the case you should be just fine. The stress of losing a loved one could be elevating your cortisol levels which might be playing into your recent attacks. I hope this passes for you sooner than later! 

    • Like 2

    Caffine ?

    in General Board

    Posted

    Hi CapeReef,

    It's sort of the opposite for most. Many of us use caffeine prior to jumping on o2 to help abort an attack. I think it might be a coincidence but you never know.. it could odly be a trigger for you. I hope you stay pain free!

    • Like 2

    Strange cluster symptoms

    in General Board

    Posted

    Unfortunately ever since my very first cycle back in 2020 I have had pretty bad shadows year round. Some days are much worse than others, especially if I forget to take the curcumin and turmeric. I mentioned the new users banner because there are many things you can try to not only deal with shadows but also possibly skip through a cycle. I can elaborate a bit more if you like but it will require your post to be moved to something like theory and implementation.. 

    • Like 2

    Strange cluster symptoms

    in General Board

    Posted

    3 hours ago, Redbeard said:

    When I say shadows I mean heavy shadows,

    Hey Readbeard,

    Yea I get really bad shadows pretty much all the time as well. At times I feel as if I have vertigo:blink: Some see them as a precursor to a full blown attack. For myself they are somewhat a part of my daily life. I do get a good deal of relief from taking a daily dose of curcumin mixed with turmeric and others have decent responses to ginger capsules. There are other methods of dealing with your CH that you may want to check out (some of them have helped me with my shadows as well) that can be found by clicking on the blue banner at the top of each forum page (new users please read here first). 

    • Like 2

    Cluster switching sides

    in General Board

    Posted

    Hi Elia,

    While it is somewhat rare to switch sides it does happen sometimes. I've never had the same pattern that you speak of but I have had occasional random spikes on the "wrong" (non cluster) side. I have also had cycles that start after having pain on the wrong side. The CH attack seems to always go back to my normal side when full blown though.  

     

    • Like 1

    Hello, new here

    in General Board

    Posted

    1 hour ago, M-Philly said:

    haven't gotten back to me because I'm not having "12 or more headaches a month".

    Sounds like they are treating you as if you have migraine:angry: If you have to say that you have 15 a month to get an appointment then I feel like that would be a justified fib!  

    • Like 2

    Denver Area and Emgality

    in General Board

    Posted

    Hi WU. Sorry for the abbreviated name (your handle is sorta long):) anyhow emgality has had very mixed reviews on here and I wouldent beat yourself up over not trying it sooner as the mixed consincious seems to air on ineffective. Anyhow I hope you find relief from it. It is considered a blocker (I'm pretty sure at least) so keep that in mind if you want to venture into busting. Shoot what's not a blocker these days... I use RC and the D3 Antihistamine reg. I still get hit but nothing like In my past . You found a good place  for questions and advocacy,!

    • Thanks 1

    D3 Regimen Dosing Frequency and Bloodwork Question

    in General Board

    Posted

    1 hour ago, Bejeeber said:

    Huh? Snippy, SHMIPPY, you've never appeared to have a snippy bone in your body, and I'll take this occasion to nominate you for the "Least likely To Ever Get All Snippy" award to be ceremoniously dished out at the next CB conference. :lol:

    Thanks Jeeb! I was feeling a bit guilty as I was just not 100% myself yesterday (mild attack that woke me at 2am when I thought this party was over) so I did think I just wasn't myself...( at least not 100%) I appreciate the reassurance!  

    • Like 1

    D3 Regimen Dosing Frequency and Bloodwork Question

    in General Board

    Posted

    Hi @LHeidkamp,

     I feel like my last comment came across a bit snippy and so I just wanted to come on here and apologize for that. After thinking about it for a minute I felt somewhat like a hypocrite because I was sort of a “toe dipper, “measure first” sort of person in the beginning of all this fun. I am sure some of the awesome people on here that helped me jump are shaking their heads (or they should be) because it took quite a bit of coaxing from many for me to start helping myself. I suppose I just get angry thinking about the unnecessary pain that I put myself through and that many endure when overthinking or trying to do things by the book. After re-reading your comment about labs etc. I see you did just jump and start the loading. I will be good to go in and get your labs when you are done just so you know where you’re at. Anyhow I am glad you are on here and seem to be finding your way through all of this! Wishing you pain free days ahead! 

    Phew...conscious clear;)

    D3 Regimen Dosing Frequency and Bloodwork Question

    in General Board

    Posted

    In my opinion (only), if you sit around and wait to be seen by a physician that knows less than you do about your situation you will be in pain much longer. I'm not saying that it's not important to get all the mentioned levels checked because it is. At the same time getting out of horrific pain is just as important. Anyone can look at the pool and wonder how cold it is or how deep it is. Some can stick a toe in and test the water, some can get a measuring stick and decide if they can navigate...some just jump too. Not trying to be harsh in the least just exuding my faith in homogeneous science..(citizens science.

    D3 Regimen Dosing Frequency and Bloodwork Question

    in General Board

    Posted

    2 hours ago, LHeidkamp said:

    WHEN in the day you should take these supplements.

    I don't think there is a particular recommended time as far as morning vs. evening but to answer your other question regarding with or without food, it is suggested to take with food to help with absorption. You are correct on the magnesium. I highly doubt that your insurance would cover supplements unless you are extremely deficient (in there book) at least...  

    • Like 1

    Episodic Cluster Headache

    in General Board

    Posted

    Hi Darryl,

    I am also a CA cluster sufferer. Welcome to CB! I've never been to Maryland so I have no clue as to the elements or seasons involved. True native unicorn lander here^_^ California is notorious for pollen's, pollutants and blatant discord for it's population. Anyhow, I also went through a late season cycle, October-December. Allergies are a real bugger for us cluster heads and yes I do believe it could be causing you some issues. I am so glad you discovered the D reg as it has really helped me.  Please do yourself a favor and look up the "Full Monty" D3 reg (incorporates antihistamines into the protocol)  or get in-touch with @xxx the curator of the regimen. You landed in a good place with lots of folks that will aid in pointing you in the proper direction. Lastly do check out the new users ribbon at the top of each forum page. ATB!

    • Like 1
×
×
  • Create New...