End-of-Cycle Anxiety

[Onglamesh]

So my pattern of pain has been strange lately... I get 1 or 2 days of nothing, then a day and/or night of rapid-fire cluster attacks (every hour, on the hour, thanking a God of which I'm not certain for DMT).  Pesky Beast wakes me up at least 4 times a night, rendering all my sleep unproductive and leading to a day of yawning and shadows (if not more full-blown attacks).  Then it repeats itself, and I get a break again for a few days.

I seem to remember my previous cycles going this way toward the end.  This is the only cycle during which I've had a good abortive drug, so it has occurred to me that it's the first time I haven't contemplated suicide.  Normally I end up getting my remission just before I'm ready to give up, and thankfully this time I've been quite okay with my hand of cards.  Now ending it doesn't seem like an option at all, as all I need to think about during an attack is "where's my medicine and how can I safely use it ASAP?" 

But now I am still anxious as my attacks become more frequent and severe (during the bad days).  It's currently been 3 days since any attacks, and I am stuck in the demilitarized zone between "don't leave home without the fractal dust," and "rejoice and feel like a normal person for a few months."  Maybe Schrodinger should put me in a box, then HE could try to calculate the likelihood of the Beast returning.  By his logic, I would simultaneously be in cycle AND out of cycle, which is pretty much how I feel right about meow

...

I just want it to be over, I'm always so hopeful at this point, but then another attack begins and I doubt my ability to sense my own body a little bit more.  So as the years go on and the cycles continue, I wonder if I will ever get over this sense of impatience, or maybe become aware enough of my senses that I will know for sure when the cycle is complete (rather than wishful thinking).  Unfortunately, even in between cycles, I still fear the return of the pain and can't seem to go a day without thinking about it.  I even tell myself, "it hasn't hurt for months and still you're obsessing over it, just begging the pain to come back with the power of suggestion."  I suppose this may be some form of the CH-related PTSD I've read about... I need to find a way to wrap my mind around the inner workings of my head, as my head probably won't change to suit my mind any time soon.

Anybody else familiar with this end-of-cycle anxiety?

[jon019]

Hiya Ong,

Sorry I can't be of more help than just to say: I hear you! Was episodic for 23 some yrs...6-8 weeks on/off...all  yr long. Tho I battled depression in general ...oddly it was MUCH worse OUT of cycle. When in cycle I could focus and just deal with it...without being all pissed off and sad! I think because I had a plan....dunno. Never ceased to puzzle me. Eventually became chronic....and most of the depression went away.....retired and nearly all the rest went too....no more stress. I highly recommend it....................................

Best

Jon

[Archimedes]

I have sort of the same thoughts this cycle. It behaves strange and I had the worst frequency with 8 attacks per night during March since ever. My last cycles just went on for some weeks and then one or 2 years remission - I didn't think about it much back then afterwards. Not this year. Due to the prior weeks of 8 attacks per night I find myself now being obsessed with the topic. Even if PF since 3 weeks, I can't think about anything else throughout the day. Obsessing what could trigger. Obsessing reading stuff about it. Coming across other bad desaeses I fear of getting, doing doctor marathons. Full kidney check ups, brain MRI etc. I feel I am not "here" like watching my life as a movie, forgot 3 times now where I parked my car and have trouble reading (seeing different words then are actually there)

This behaviour prevents partly the cycle to fully end, I feel somehow it's still not over even after close to 5 months. I am somewhat sure about it. That's bad. I am in psychological treatment already (coincidentally started seeing a psychologist 2 weeks prior to this year's cycle..)

It's not helpful yet and I see him since months. He tries to teach mindfulness , training not to focus on medical stuff and inevitable putting yourself in a victim role, letting your mind flow, things like that. Doesn't help. I really try, and I understand the concept and am open to it. It feels to me he doesn't know further currently as well and even if he is no advocate of them, suggesting anti depressants now. I have a prescription lying around but am not at the stage to go this route. There must be other options I haven't given up yet.

Long story short. This is a learned behaviour as we adopted to our painful nights / days,  eventually creating a constant sublimal fear, anxiety and stress even out of cycle. Sucks badly and has wider consequences then just for CH. I don't know what to do at this stage. Frankly shouldn't even check on this board  daily  (you are all great but you know what I mean)

I don't know, I keep searching and retraining my brain..

[Archimedes]

What I forgot - saw my Neurologist this week again and during our conversation he mentioned I come across severley anxious and tense to him (again, I am PF since a longer time) and that I urgently need to look into that. He said he has many cluster patients and confirms a pattern of people being extremely strong during an active phase and falling into a deep hole when it's over.(even if you don't directly feel you are "falling")

Yes, PTSD is real for CH sufferers and yes it's common. He is an internationally known expert and also supports the " alternative " m/l options we also discuss on this board. I mean with that I trust his statement.

Anyways - he was strongly suggesting to me to look into a book from Saki Santorelli, director of the Stress Reduction Clinic in Massachusetts. Check his work out on Google, it seems to be an essential reading for med school students.

It's basically about the mindfulness topic / power of mind when it comes to healing (or the other way around I guess....)

Haven't read it yet, but will look into it or check if a library has it on shelves. Can't hurt.

[urs Brasil]

@Onglamesh

I know this type of lets say depression during cycles. I never realize the heaviness but depressions are always strong as hell. I had sessions with doctors getting all the well known antidepressants. None of them did work but this is another story.

Depressions went slowly away when I started the vitamin L regime. Since this days I do micro/mini dosing of vitamin L and I feel definitely much better. My mind was able to wrench around cluster and dealing appropriately with the beast.

I just ask myself if you do have enough experience using vitamin L. I do not have much experience using vitamin M, eventually they do the same, working on the mindset.

Until today I was thinking my depressions came from abuse of Naramig but yes I may be completely wrong about this.

 

 

[Onglamesh]

Thank you all for your replies!  It's very comforting to know I'm not the only one who gets crazy over this, haha

Very happy to report no attacks for a week!  Last Friday afternoon was the last time I had to medicate (seldom in the weeks before that), and it was just one of those long-lasting mild ones that I didn't want to think about anymore.  Since then I've only had tiny shadows here and there, and I suspect those aren't cluster at all, probably just sinus pressure from the flu I've been enduring this week.

Anybody ever notice some kind of merciful synchronicity between the headaches and other kinds of pain?  For example: I had my wisdom tooth removed November 2015, had been in a cycle until the rotten tooth started to hurt nearly as bad as the Beast does.  Around that time, the headaches went away and I was left to focus instead on my tooth pain.  Got it removed (long process requiring multiple operations over several months), and during the tooth pain I remember there was no head pain but a constant fear that it might return, and feeling grateful that I only had one severe pain at that time.  And here I am again, just past the end of a cycle (so it seems), and I get the onslaught of flu symptoms.  I also have recurring pain in the muscles above my knees, but it also seems to back off and make way for the Beast when told to do so

Probably just coincidence, but I wonder if it means anything... I'm sure there must be plenty of folks who simultaneously suffer from CH plus another kind of strong pain, right?

[Onglamesh]

Or it's almost as if my body CRAVES pain!  Maybe the clusters just fill in that role when other sources of pain are not present, so the trigeminal nerve is like "Hey, I can give you some pain, since you appear to be lacking!  Do you feel alive yet?"

I mean my mind certainly doesn't want the pain, but it's like my body insists there must always be some available, just in case... lol

[Archimedes]

Yes its the same for me. When not in Cycle, one pain / injury follows the next. And that since a decade. Root chanel infection currently started right after. This goes on year around. Heavy neck pain gone after weeks not able to turn your head or even breath in without pain ? Fine, here you go with a varicocele (swollen vain in your scrotom). Treated ? Get your share of heavy flu not going away for months. One month after the other something else. 

No I am not waiting for it. I don't sit around saying what's next and so forth. But it still happens. This is a vicious cycle as your body and mind is conditioned towards pain and not enough time in between to recover. This creates a constant (even if sublimal) stress environment which in return opens the door for nasty stuff.

This sucks badly and is very dangerous. I am finally seeking psychological treatment and might consider starting Zoloft now which seems the go to stuff for migrane suffered with depression as well.

This constant pain spiral did a lot of damage so maybe the SSRI route helps. I always stayed away from that path but think it's worth a try now. Yes I know it can't be done when attempting to bust. Haven't finally decided yet 

I am convinced this is also for some people the reason why cluster started at all. Either too long constant stress or a severe traumata either physical or psychological before our very first ever atrack that keept lingering and finally kicked of a chain reaction. Not the only thing involved but it greatly added to it. 

[Archimedes]

@urs I strongly believe Vit L can treat your mind just like you say. What I still can not get my head around is why there isn't finally some more research put into this substance or even allowance to get a treatment supervised in a clinic. It doesn't have to be sold on prescription in drug stores so abuse can be ruled out and per my understanding doesn't even have real addiction potential. Heck even cocaine or methadone and what else not is administered in specialized clinics.

If it's true that the occurance of CH in the population is 1:1000, then it isn't that rare actually. Similar to MS, which has a lot of attention.

I also don't buy the theory of big pharma not interested, they could just sell according new options with an markup and make the same or more then on the triptan or ssri market.

Also don't understand why the very promising BOL-45 trial is years ago already and never heard again from.

[urs Brasil]

...I guess because there are people out there, sometimes having an agenda.

 

[CHfather]

Arch

21 hours ago, Archimedes said:

@urs I strongly believe Vit L can treat your mind just like you say. What I still can not get my head around is why there isn't finally some more research put into this substance or even allowance to get a treatment supervised in a clinic. It doesn't have to be sold on prescription in drug stores so abuse can be ruled out and per my understanding doesn't even have real addiction potential. Heck even cocaine or methadone and what else not is administered in specialized clinics.

If it's true that the occurance of CH in the population is 1:1000, then it isn't that rare actually. Similar to MS, which has a lot of attention.

I also don't buy the theory of big pharma not interested, they could just sell according new options with an markup and make the same or more then on the triptan or ssri market.

Also don't understand why the very promising BOL-45 trial is years ago already and never heard again from.

Arch', just some thoughts, which are not really disputing your main points.

There is a clinical trial of the effects of psilo on CH taking place now, at Yale Medical School (thanks to ClusterBusters).  https://clinicaltrials.gov/ct2/show/NCT02981173

There might be some errors in what I'm about to "report" about BOL after the initial trials, but it is basically accurate.  Around 2010, a US company, Entheogen, patented BOL for CH and purchased the temporary rights to it (it's owned by a university, Harvard I think, if I have the facts right) for a specified period of time (5 years?). Then Entheogen tried to raise the many millions of dollars it would need to do real clinical trials of BOL and bring it to market. I think their main strategy for trying to do that was to partner with a established pharma companies.  (The first trial of BOL -- also sponsored by ClusterBusters -- was very important, but it was far from being a true clinical trial of the type required to license a drug.)  We were often told that Entheogen was on the verge of raising the money, but it never happened, and then its license on BOL expired.  The cost of clinical trials is staggering in itself, and add to that the possibility that they might not be approved because of the LSD content of BOL.  So, technically, it's true that the pharma companies didn't see how they could ultimately profit enough from BOL to pursue it.  I guess it's important to remember the extent to which CH is "under the radar" in the medical world, because I suspect part of the issue would have been, even if BOL got accepted by the FDA, you'd then have to get doctors to correctly diagnose CH in the first place and then know to prescribe the BOL.  When you think of how few doctors even seem to know to prescribe oxygen, that seems like it could be a big issue requiring a very costly campaign to educate the doctors about a condition they very rarely see (plus, you would have, like it or not, the problem of doctors not wanting to prescribe something with LSD in it).  I feel like all the combined factors led pharma companies away from wanting to develop a treatment for CH.

I have a long-time friend, my golf buddy of 20 years, who developed a miraculous drug to combat depression.  It works when it is first administered, has no side effects, and treats even the worst depression.  It has been in clinical trials for more than six years now, at a cost of hundreds of millions of dollars.  And that is even after the FDA gave the drug "fast track" status because the early clinical trials were so impressive. My friend's company was bought by a very big pharma company, Allergan, for about 850 million dollars, and Allergan is now trying to bring the drug to market.  Expected to be available in 2021! (The drug is called rapastinel. You can look it up. Here's one recent quote about it from a news story: >>Saunders described Rapastinel, which is under development for the rapid onset action for the treatment of depression, as one of his "personal favorites." The company expects Rapastinel to launch in 2021 with $1 billion to $2 billion in peak sales.<< )  So it's a darn tough road to get a drug to market.  (Final thought about rapastinel: It works on the same receptors that ketamine works on, but without ketamine side effects.  I am vaguely hoping that since ketamine treats CH, maybe rapstinel will, too.)

[Freud]

*bump,update*

https://www.allergan.com/news/news/thomson-reuters/allergan-announces-phase-3-results-for-rapastinel