BoscoPiko
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Posts posted by BoscoPiko
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My experience worked out that time without my head acting up. I made a point to take some treatments prior which I believe made the difference.
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NO! THOUGHTS OF IT YES.. SUFFICED? Wade in the muck often? Want help? Still here....
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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!
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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.
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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!
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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..
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I remember the segment! You did great. It was of course shared here on the site. I can't say that any of my experiences have included anything with the nasal passage but it does remind me of a recent post on here about another condition called Charlin Syndrome?
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Glad to be of any sort of help! Kick the bunny in the teeth twice..., once for you and once for me!!! A third kick would be ok 2
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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
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
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You stay strong! No matter what we are all here with you!
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Hi Billie,
So sorry to hear that your going through what throughly sounds like a terrible cycle
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!!!
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Pretty accurate...
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13 hours ago, stellaGreece said:
should i start D3 regime while i am in this cycle?
A big fat YES!! Attached is the latest info from Batch.
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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...
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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!
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4 hours ago, Racer1_NC said:
Bob talks about the history of CB...
Gotta love that shirt!!
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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.
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Now that I think of it since it is his thread that should notify him to
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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!
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37 minutes ago, CHfather said:
I wouldn't be too quick to say that the Indomethacin eliminates hermicrania as a possibility: How much did you take, and for how long?
Good catch CHF!
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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!
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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!
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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.
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Antidepressants as preventative?
in General Board
Posted
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..