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Brad
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So, I've busted two times with proper detox protocol and dosage, to a "T" and was still hit with the worst in my life the next night (last night) day. After 2 months of this I am truly struggling to go on. 35 years of this has ruined relationships and left me in financial ruin. Gotta tell if it weren't for my kids, I probably wouldn't be here typing this to you. I'm struggling hard to go on. I can't stand the anxiety anymore. I need help in so many ways. Such a horrible quality of life. My patience is just thin and feeling at the end of my rope.

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Posted (edited)

I just left a message with Cluster Head support group. I am hopefull I'll get a call back tomorrow. I've attempted to bust in 3 different cycles over years  and none of them worked. I feel so defeated to seeing others get relief, and the beast just continues to crush my skull, no matter what I throw at it. It's just not fair us to have to experience this level of pain and frequency. It's. Just. Not. Fair.

Edited by Brad
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I feel you Brad, busting is not working for me as well and I'm nearing day 100 on this cycle. Are you chronic or episodic? I'm hoping the end of this episode is close for us both! Hot soaks in the tub have been able to abort some of the attacks. Have you tried oxygen yet? Hang in there man, I'm trying to find some L to see if I can get a bust going. We both might need to look into D3.

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Brad, this might not be very comforting, but you have to consider that your terrible hit was a sign that the busting is working.  These kinds of unusually bad "slapbacks" are part of the process for many (or most) people, and they're the best indicator we have that the busting had an effect.  I really, really hope that's going to turn out to be true for you.  The standard wisdom here is that typically the slapbacks are less bad after the first couple of busts.

You seem like a person who would have diligently tried practically everything, but I have to ask along with xBoss about whether you have tried optimized oxygen (properly high flow rate, top-quality mask, best breathing technique) and whether you're doing the D3 regimen. (And some other possibilities, such as Benadryl or Quercetin, energy shots, etc.)

I know there are a lot of people here feeling your pain and wishing for better days for you.

 

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I’m usually on here looking for help and don’t consider myself qualified enough to give any advice out but I will say busting never worked for me either. It would kill a single headache but it would never end the cluster. The D3 regimen is the only thing that bought me A LOT of time (9 mo tops between without; 3+ years between after D3). Benadryl helps. Message Batch please, he is so helpful, smart, and kind. Wishing you the best 

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Posted (edited)

You are all so incredible. Thank you. I am out with my kids, rn, but will give a much lengthier response and touch base a little later. I can usually keep these thoughts and feelings held together, but I have finally been getting therapy for my previously stated PTSD. And while it's been absolutely necessary and positive for me, the beast just seemed to have caught in a week moment. I appreciate all of you and will answer your questions here very soon. 

Edited by Brad
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.....talk it out Brad...we're an understanding audience so ya don't have to explain stuff....but collecting and expressing your thoughts helps to focus the mind and relieve some stress...it's really good medicine....been there.

best

jonathan

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I'm in the same boat Brad. I think I need some help/guidance too. I'm also going on 2 months of this after only a month of remission. I fear I'm becoming chronic and getting to a dark place as well. I try to talk it out with others but I don't think they understand the severity of this. My only hope for now is waiting to dose on MM but I'm losing hope. I started the D3 regimen on May 22 and added benadryl, and am on the 2nd dose of busting with RC seeds but the attacks are still there and don't seem to be improving. I'm only 25 and it feels like my life is over before it even got started.

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Posted (edited)

Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it.  Yes I am a hot mess atm, but that's the life of a cluster head. lol  So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. 

Ok, let's get down to brass tacks. Xboss, I feel for you brother, 100 days is a rough stretch. My first introduction to trex shots turned me into a chronic going from a lifetime of about a two month cycle to two years. Then I forced myself to back off of using them every time, tapered down to nothing and the cycle broke a week later. Now I use them sparingly, especially to avoid rebounds. Now, I had requested and old script of 02 with my new doctor, only to be told that he couldnt do it (stricter rules these days, I guess) and referred me to a neuro, who I was kinda rude to back in 2014 because I refused her suggestions of carbamazapine and some anti seizure meds, I guess I was expecting a better answer than the one I got. However, I will discuss nerve blocks, emgality, 02, and botox with her when i see her next week; aaaand possibly an apology I guess. Although, Im sure shes used to cranky CH patients, by now. lol.

Ok, all of this is going on right as I am finally starting the career that I have been working towards for almost a decade, and I LITERALLY started my first day today, as a medical lab assistant here at our local hospital. Its my foot in the door, while I finish my radiography and imaging degree within the next year and a half. THIS lifelong torture demon we live with is my driving force to get into healthcare in the first place....and I finally made it!  NOW, I DONT WANT TO RUIN IT BECAUSE OF MY DISEASE! Like many other jobs in the past. My manager really likes me and has the low-down on my condition, and I promised to manage it the best I can until the cycle is gone. 

I had restarted the D3 regimen minus a few ingredients, and It seems to raise my BP (Oh yeah, Ive become hypertensive in the last year) which then triggers one every time. So I backed off. I detoxed 5 and 5 for mm, and will again in a few days, BUT, I think I may have found something of interest. I stumbled upon some studies conducted on B1 (thiamin) deficiency and CHs, and head tremendous pain relieving results, with high doses tapered up to 750mg a day to break the cycle, and back it down to 600mg a day for maintenance. (with NO DETOX! I took 100 mg last night and 200 this morning (with food). Going for 300mg tomorrow, and have only had one little shadow.  I will keep you all posted on my results. 

Thank you Vajenna, you are right, D3 really does work under the right conditions, because it has always done wonders for me in the past, until recently. But I plan to get back on a lighter regimen when this cycle is gone, along with properly spaced dosing of mm. 

Jon, I appreciate you!  That, was a comforting response, and I thank you. 

And je3wook, OMG I felt this!!!  Hang in there.  I have weak points quite often in every cycle actually, but something else has always seemed to keep me going, even before I had kids.  I wish you a painfree break soon no worries, we have some incredible and compassionate minds on the case. We will find a cure soon!!  Love you ALL!!!

Edited by Brad
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Brad, hoping that the B1 is going to continue giving you relief!  I looked up that case report that you mentioned and it is encouraging (https://www.hindawi.com/journals/crinm/2018/3901619/).  

Of course, you know that you could set up a welding O2 system in a couple of days.  Maybe your current relief will be long-lasting (or permanent), so you can wait to see what your neuro says after you make up with her next week.

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Brad....not sure your experience with OXYGEN...changed my life...do your best to get and use appropriately: min 15-25 lpm, non- rebreather mask/direct/demand valve, proper technique (hyperventilation most popular, also breath and hold, slow breath, combo)...

 

Edited by jon019
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On 6/22/2021 at 8:45 PM, ja3wook said:

...I'm only 25 and it feels like my life is over before it even got started.

NOPE! .... i was 26 when it started for me (most start around that age)....retired senior now.....life, job, career. it was OXYGEN (mostly), energy drinks, D3, verapamil for a while, zomig nasal spray as abort of last resort....maybe even age and chemo got me through. Busting remains in the tool belt if need be...

...find the right tools (we'll help) and note that they may change,  make a plan (scripts, meds, providers), and keep a good attitude (i always thought, screw it, aint gonna kill me, aint gonna quit)..............

best

jonsthan

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    I think thats' a great idea on the welders tanks. I think will just look into those as a regular option. Yeah, I did prefer having o2 to help knock it down enough to guarantee the trex shot would be effective, but rarely ever fully aborted it alone, I had to have a shot or redbull ready; and had a nasty rebounds, too. Although, I did not have the rebreather mask back then, either.

    Gotta tell ya tho, its not easy trying to afford all of these treatments and remedies with a disease that makes it difficult to hold down a job. We must keep swimming, tho,  just keep on swimmin.:lol:

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  • 2 weeks later...
Posted (edited)

Hehehe.....I've been meaning to respond, but....you know.....ADHD:rolleyes:

Ok, SOOOOOOOO I'm feeling great! Since the last post, I had nightly nasty kip 6 to 8 attacks, even up until independence day. Then from Monday till today, I only had a kip 1, which I suspect was my fault because I ran a test and had a hot dog for dinner last night, and was later greeted by the mini-malice.  But, also took a risk by only taking 400mg B1 that day(Im back to 500mg now).  However, I slammed a redbull, melatonin, and some ginger capsules and went to sleep. 

Now, I really feel the B1, and mm busting (4 times now), are truly working and not just falling out of cycle (due to hotdog experiment); because for the first time ever, I have been super diligent in only consuming foods with no added or naturally occurring nitrates or nitrites, or mononitrates. Takes forever to grocery shop now, that's for sure..  And I just started up the D3 regimen again.  Even with the stress of learning a new job of drawing blood all day as a lab phlebotomist, it has not awaken the beast. Although, I still tread lightly and remain hyperaware of keeping it tamed for as long as possible. WHEW.........That felt good to get out!

How'z yall doing?

Edited by Brad
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Brad, very glad to read this!

I'd like to consider adding B1 to our list of possibly-beneficial treatments, but I have a question.  

You first reported using the B1 on June 22, and it seems you started the B1 on 6/21.  In your most recent post, you say that you had bad attacks up to July 4 (~13 days).  In the case study you referred to, the patient had "decreasing frequency of attacks until they disappeared completely within 10 days."  Was your experience like this, with steadily decreasing something (frequency or severity)?  Sounds more like in your case it was more like same same same over.  If you credit the B1 in part for ending your cycle, is that maybe because you ramped up your dosage slowly?

(I would suggest that during your PF time (may it last forever, but just in case) you might want to work on getting an O2 system.)

Glad you can go back to the job you worked so hard to earn, and keep up your studies toward that next one!

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Posted (edited)

Well, I was going to respond yesterday morning, but had become busy and had to put it off, but I'm glad I did because after about 5 days of being mostly pain and shadow free, I was smacked with a kip 8 for about 2 hours with a terrible 2 to 3 level linger till I fell asleep. However, I want to mostly attribute that to a possible slapback after a wonderful bust the previous night....and I bumped the B1 back up to 750mg, just in case.  

Now, after thinking back, I would have to say that yes CHFather, because right after that big post on the 22nd, they came back at about one attack each evening.  I think it was slow-going because I cautiously increased the B1 dosage, and was mostly getting hit every evening still with kip5's to 7's, and one at work which really sucked. Trying to enter patient's data while quietly fighting off a kip4 for about 3 hours with no shots or and relief, was an awful challenge. But, once I reached 750mgs (which I think was on 6/25) I still got them every evening, BUT, they decreased very slightly in intensity and duration each night until the last mild kip 4 on 7/4.  But my head had been noticeably clear and even shadow free (aside from hotdog experiment) until last night.  I feel the B1 and mm are working hand in hand, and once I get my D3 serum to optimal levels, I think I will have finally reach busting nirvana. lol

Now, I kinda feel like a jerk, because I am going to have to call the O2 service people to go ahead and deliver the tank, because I got to cocky and told them to hold off last week.  I have great benefits through the hospital now, but still cant seem to get a smaller travel tank. So, I will prolly have to go the welders tank route for that one.  I hope this all helps and fills in any blanks.  PF wishes!

Edited by Brad
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On 7/9/2021 at 2:11 PM, kat_92 said:

@Bradhey!! So glad to hear you’re doing better. I HATE seeing posts about people struggling with this :( keep up the determination 

You are awesome!  I will be ok. While I never take it lightly, I get in these modes of depression, and this is the best place for me to vent and decompress.  It's also comforting to discover the the ever growing plethora of remedies, advice and other people's relatable stories.  Thank you for soooo much for caring enough to respond! It truly means so much to me<3

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8 minutes ago, jon019 said:

.....a full but DUSTY O2 tank being among the most beautiful sights ever..  I liked to keep one around.....ya never know...

 

At this point, I couldn't agree more:D

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