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BoscoPiko

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Posts posted by BoscoPiko

  1. So glad to hear this. Seems like the important part is the simple fact that you are doing better! I'm still really lacking the ability to think all that well..(went to get sweetener to put in my coffee this am and almost dumped some wet cat food in it instead)... my husband telling me that he already fed the cat was all that stopped me from dumping it in.. uff brain fog is serious sometimes! The cost of everything sucks rt now so my apologies to your wallet. I sure hope you get a break!

  2. 11 hours ago, muffin_man said:

    One question.  I'm still taking the methyl folate(vitamin b).  Should I still take that? 

    I missed the part about only taking it for 90 days so I have been taking it all along as well. Seems like it hasn't hurt anything as I've been taking it for over a year... 

    • Like 2
  3. I know everyone is busy and money is tighter these days than usual but every donation (even miniscule), will help! If any of you have ever received Spinys help on here,  then you've received something that a monetary value can't be placed upon. I hope that everyone will consider maybe skipping your daily Starbucks or Dutch Bros and donating that amount. Much love and appreciation to you all!

    • Like 3
  4. Hey Mit,

    Sorry to hear this is happening to you. It's always scary when pain changes. Not that cluster pain is ever something that we get used to, I think it's more that we come to know what to expect. I have had occasional spikes on the wrong side and it always scares the heck out of me. I have a bad habit of associating everything that has happened prior to an attack as being a pre-curser for the next but normally it's just  the bunny thumping about to shake things up I guess. I wonder if your lingering pain after a CH attack is sorta like severe shadows which I suppose could feel like a migraine? Are you on the D3 regimen? I'm sure you have read about it on here but if your not on on it you may want to give it a go and add some curcumin (ginger +turmeric) to help with the lingering pain. I know my response isn't much help but it's all I got on this one. I hope you get past this sooner than later!!

    • Like 1
  5. From a ladies perspective not sure which you are but suppose it matters not. I use just the breathing tube at work. No messing up the makeup and what not. No mask outlines on the face etc.. when I'm home I use the over the nose and mouth mask as it seems to help me abort quicker although I am still at the hit and miss phase of the 02. .. I've tried lots of methods but have still yet to hone it in. Nothing wrong with that I suspect.  Afterall it takes time and effort to get things rt. I'm really hoping you stick around a while because being here has helped me so much and I want that for others. You included..

    • Like 3
  6. Hi swtbite,

    It almost sounds like something is off in your back causing the pain to radiate up to the back of your head/neck.. The way you describe the pain sounds like a normal headache not a one off attack especially since you are getting some relief from ibuprofen.. I'm not big on chiropractic work but it might be worth a try in this instance..

    • Like 1
  7. I've seen your other posts on various threads and just wanted to follow-up on what @spinysaid with regard to micro dosing. First and foremost I'm so glad that you seem to be experiencing relief! That's so promising and makes me happy for you. Second I have to ask you to follow up on here as the general consensus has been that micro dosing just isn't enough. Most that have experienced success have taken 1 to 1.5 g. Per session which leads to a mild, maybe sometimes obvious trip with enhanced color and sensation maybe even visual distortions anyhoo .. I'm cheering for you! 

    • Like 3
  8. 10 minutes ago, Baby Moth said:

    but didn't give me the mask so I couldn't actually use it. This was really disappointing b/c I had attacks after it was delivered. I STILL don't have the mask. 

    Hi BM,

    That's frustrating but most likely they would not have provided you with the proper mask anyhow. You can order one on this site by going here  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit or on line just make sure it's a non re-breather mask. Be careful with the triptans, they are know to extend cycles as well and cause rebound attacks.  And just because it's helpful, here is a video to help you with breathing techniques. 

     

     

    • Like 1
    • Thanks 1
  9. On 8/21/2023 at 9:57 PM, Florin said:

    Hi! … thank you. It should be Brooklyn or Manhattan area. Maybe somebody knows a doctor to get the O2 prescription. I need to find the way.  … I know about welding O2 … but I will take it at last option. Better to find a prescription right? 

    No not really unless your insurance will foot the bill otherwise they are one in the same..

  10. 2 hours ago, Luis said:

    How do you guys deal with stomach pain after taking some many vitamins? That’s what I’ve dealt with before and had to stop. 

    Poop..early and often.. eat first even if it's just a yogurt..

  11. 15 minutes ago, Baby Moth said:

    revolve around will this get worse?

    Hi BM,

    CH can be really terrifying. As for will it get worse the answer is sometimes yes and sometimes no (not much help on that one)..

    17 minutes ago, Baby Moth said:

    Is there any way to know if it will still give me breaks? Or will it get more frequent?

    Sort of the same response as above..

    18 minutes ago, Baby Moth said:

    Can it go from episodic to chronic?

    Unfortunately yes.

     

    19 minutes ago, Baby Moth said:

    Is there anything I can look look into right now that is most helpful?

    Yep.. That little blue banner at the top of each forum page "new users please read here first". There is a bunch of things you can try to help you prevent them from happening and abort them when they happen. I am relieved to here that you received o2 it really can be a game changer. There is a plethora of information on this site from long time sufferers as well as those with family that have CH. You can even find videos on 02 breathing techniques, proper 02 mask types and flow levels along with all kinds of tips and tricks. I would start with the blue banner, then reading up on the D3 regimen (you will want to start this reg ASAP). Cruz this site in and out, you will find help here! My last post was about being scared my clusters were coming back so I really understand the fear as do all of us. CH is hard but It's going to be ok!! 

    • Like 4
  12. 1 hour ago, Bejeeber said:

    You got that right @BoscoPiko, and it's also the real world experience of some CH'ers here, one of whom described it as something like a "reverse survival instinct" that gabapentin can spur. It is weird indeed, and can be experienced as not having any sort of "I want to kill myself because I can't take it anymore" component, but more like a calm and nonchalant "it would be very right to turn the lights off permanently right now" feeling, with no emotion. :o

    That said, I'm one of the few and far between whose CH has benefitted from the 'ol gabby, where it cut the number of attacks per day in a raging high cycle in half for me, which in turn made it possible for me to abort every single attack that did break through, and that was a really big deal.

    I'd advise anyone on the gab to watch out for the weird thoughts/feelings, be prepared to recognize them as the drug talking, and to fully ignore them.

     

    Wow @Bejeeber great info!

  13. Here is a copy and paste from a previous discussion about it on here. It includes all of the original regimen plus this:

    ***We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty.  It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3.  It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C.  You can also add 500 mg.day NAC.

    I buy the bulk powdered vitamin C in 1Kg bags and stir two  level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime.  It tastes like unsweetened lemonade. 

    You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free.  I'd stay at 2 grams/day on the first four supplements for at least a month.  Dealer's choice on tapering further.*****

    • Like 3
  14. 4 minutes ago, Luis said:

    Any other info on gabapentin?

    Hi Luis,

    Sorry the cluster bunny is back. I don't have much info on gabby other than to say it did not work for me. All it did was make me super sleepy while the beast raged on. You never know though, what doesn't work for one may work for another... I do recall someone on here (I think it was @Bejeeber) mentioning a study that showed an increase in suicidal tendency's not that I think you would have an issue with that especially with just trying it out. By chance have you tried the "Full Monty" D3 reg? I had to switch over from the normal regimen a while back due to allergies and it has really helped.   

    • Like 1
  15. Hey there CE,

    The pain can certainly be isolating which can lend a helping hand to allow loneliness to creep in. Having supportive family like you do is so important (as you realize). Lot's of us on here to talk with so no need to allow yourself to feel so lonely prior to popping on here. Sometime just reading on here and talking to others that understand what your going through can really help keep the spirts lifted.

    1 hour ago, CursedEyeball said:

    sending them to google to find an exorcist

       I see by this comment that you have a wonderful sense of humor:D Trust me laughing at this sh*t show can be a saving grace of sorts. I hope you get your o2 and find your way out of this cycle sooner than later.

    • Like 5
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