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BoscoPiko

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Posts posted by BoscoPiko

  1. 7 hours ago, Cjmoe said:

    my doctor put me on high doses of vitamin D, oxygen for the attack,

    Hi @Cjmoe,

    Sounds like your Dr. is a keeper! Unfortunately what you describe with regard to the stabbing pain in the eye on one side, tearing and nasal congestion is pretty indicative of CH. The part where you mention daily headaches that feel like a looming migraine sounds like what is often referred to as shadows. Shadows can be daily for some of us and more of a pre-attack warning for others. I'm glad you started getting your D3 levels elevated and urge you to read about the D3 regimen on here as it includes various other supplements taken in conjunction with the D3 to prevent the cluster bunny from attacking and it's important to incorporate them to reach cecassion.  Lots of good stuff on this site. Happy you found this place but sorry you had to... 

    • Like 1
  2. Hey @devonrex,

    Sorry your feeling down. Sure is an easy thing to get sucked into when you have to deal with CH. The ptsd is a hard one for me as well, I remember asking on here "how often a cluster head thought about attacks" because I think of them embarrassingly often. I started meditating to for 10-15 minutes a day and just concentrating on trying to block out my worries. I'm not all that good at it, but when you are concentrating on something other than the fear of an attack, it gives less time for your mind to drift back to it. Nowadays they even have apps that walk you through the breathing and what not. For the anxt, I remind myself (probably 20 times a day) that when it happens, I will get through it and that I always do. I think the depression is somewhat natural as it not only hurts beyond explaining but makes one sad to feel excluded from the world which is DEPRESSING so I try and catch myself at the first sign of the gloom and doom mode and do something (anything) other than let myself get trapped in the walls of my own thought jail. I like to write when I am starting to feel a bit depressed because for some reason the writing always seems to come out way better when on the edge of gloom jail. I also agree with @Oaksthat little things like forcing yourself to take a quick walk or sitting in the sun make a difference. Hang in there!!

    • Like 3
  3. 7 hours ago, sam123 said:

    does anyone else have like episodic attacks but chronic shadows?

    Hi Sam and welcome.. To answer your above question-Yep... Good that you found the ginger. I use a mixture of turmeric, ginger and turmerones which helps a good deal.

     

    7 hours ago, sam123 said:

    And did it ever go away for anyone?

    It goes away sometimes and comes back sometimes<_<

     

    7 hours ago, sam123 said:

    has anyone had a similar experience with Emgality where it seems like its helping quite a lot but in some subtle ways

    I have never used it but have read a few similar things. Unfortunately most of what I have read has been on the not so helpful side. 

     

    7 hours ago, sam123 said:

    during this recent episode since April I feel like my left Eustachian tube is quite blocked/crackly,

    Maybe get an appointment with a ENT Doc. could be sinus related

     

    7 hours ago, sam123 said:

    haven’t done the high dose D3 or busting but am considering all the options at this time. I had little success with oxygen last time but I expect my set up wasn’t correct, and this time the attacks have been mild enough to bear without. I'm hoping the current cycle ends soon and ideally the shadows with it. 

    I would start with the D3 ASAP! It has helped so many of us! 

    • Like 2
  4. Hi Coverly,

    I have seen some back and forth on this subject with some reporting that they were indeed able to bust while using verap and others not. I think the dosage level has also been brought into this as well with some reporting that lowering the dose prior helped to successfully bust.  I'll look and see if I can find the threads pertaining to this subject when I get home from work if someone doesn't beat me to it.

  5. 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!

     

     

  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
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