DJ Cluster
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Posts posted by DJ Cluster
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On 5/2/2022 at 5:33 PM, CHfather said:
What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!) You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad. You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries. But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).
The reason is I'm searching for the holy grail; a non-invasive & cost-free preventative! It's only anecdotal at this stage but I'm 95% sure I supressed my CH's & will do so again with better discipline.
Our Vitamin D levels are part of the problem but I'd suggest we just need the correct amount/intensity of light, at the right times, and our geographical locations definitely plays a part in our Vit D3 levels. [My regime includes getting as much sunlight as possible in the hours after I wake]
NOTE: I'm not here to dissuade anybody's regimen & I'm truly glad if people have helped themselves, but I'm looking into other ways to correct my VD levels.
Copy & pasted for example:
*Sunlight, in particular UVB between the wavelengths of 290 and 315 nm, is the main source for producing vitamin D in the skin and is the primary source of vitamin D for the body. It is estimated that 90% of the daily body requirements are met by sunlight exposure .
*One minimal erythemal dose (MED) of UVB exposure to 6% of the body surface area is equivalent to the ingestion of 600–1000 IU of vitamin D
*A recent Johns Hopkins Hospital study found 109 out of 134 CF adults in the clinic to be vitamin D deficient [serum 25(OH)D <30 ng/ml], and none of the 33 CF subjects who finished 1 200 000 IU of oral vitamin D2 over 4 months showed correction in their vitamin D status
*Despite 50 000 IU of ergocalciferol once a week for a total of 16 weeks in vitamin D-deficient CF patients, all of the patients remained vitamin D deficient
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/
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On 5/5/2022 at 9:17 PM, Shaun brearley said:
I also thought samitriptan was my life line but the trouble is when you are in full cycle and getting hit with up to 8 attacks a Day hitting kipp7 to kipp10 you can't use triptans to abort every attack that's why o2 should be your first line of defence . Plus over use of triptans can prolong your cycle and give you rebound attacks
Oh yes, Sumatriptan is only a temporary help and even then it only really takes ten minutes off an attack for me.
My cycle is 2/3 attacks per day all year round so I don't want to be taking medicine for the rest of my days!
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On 5/2/2022 at 6:04 PM, Sef said:
Some food for thought for me.
I'm female and I started having migraines, chronic migraines (15+ days a month), and finally, clusters in addition to the migraines when I turned 34. Literally, the migraines started after my birthday and about 2 years in, I started getting clusters.
My neurologist who I had been seeing for migraines was very reluctant to dX me as having clusters (female, migraine), but the clockwork 2x a day, 12 hrs apart, sharp icepick, and autonomic features plus the response to verapamil did it.
(Edit: I had been screened for hemiplegic, idiopathic, stroke, MS, and carotid artery dissection before finally being dX as clusters.)
Previously, I had had migraines before (that's what the doctor said, but when I think about it, he might have been wrong) which had started after a horrible ENT infection. I was 25, then, and I had it on a chronic basis before they just randomly disappeared after about a year.
In addition to having clusters, I also have mood disorder (bipolar type II, mostly depressive) and have been treated for excessive daytime sleepiness as well.
In both cases, my care team (neurologist, psychiatrist) have implicated circadian rhythm issues as a contributing factor for the headaches (pain and otherwise) and my neurologist implicated the hormonal changes in my body (perimenopause), weather changes (I'm a walking barometer, air quality analyst, and pollen predictor all in one), and histamine as three of the biggest causes for all of my headaches.
I can faithfully take any and all useful maintenance or abortive medication, do a low histamine diet, keep my D levels up, try my best to regulate my circadian rhythm... But the hormones.
The hormonal factor has made everything headache-related extremely resistant to treatment - triptans and CGRPs included, so yeah, I am and have been screwed.
Hello, thanks for your response. Sorry to hear you got it rough & your other problems might make it harder, but it's worth trying everything non invasive.
The experts are doing a Great job but they aren't trying to cure cluster headaches - it's not their job!
So I just tried to take it back to basics: I was having 2/3 CH's per day at very specific times, but these times could change if something triggered an attack or my sleeping habits changed. That suggested to me a disrupt-able cycle
There are only 24 hours in a day but daylight hours & intensity of light varies - Skin pigmentation also plays a part as people with darker skin produce less vitamin D than lighter skinned people
It might be possible to devise a schedule of rest/sleep / Light/dark that can disrupt or supress a cycle....it all depends on your environment & habits. Personally I feel sleeping in absolute darkness & my afternoon naps/rests were key to me being able to learn how to play chess after 15 months of hell & for a while felt good enough to forget I had the beast over my shoulder!
I got complacent!
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21 minutes ago, snugz365 said:
should be the other way around
Definitely! Oxygen is the best abortive and I'd advise against suma as a long-term medicine
But I'm trying to find a non-invasive preventative and a few nasal sprays will do when I mess things up
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On 5/2/2022 at 5:21 PM, CHfather said:
Some notes that might be pertinent to some of this discussion.
The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there
was no particular month the cycles would always begin."In that same study, 22% reported having just one attack per day.
Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836
In that same Rozen study, 6% of people reported having a father with CH.
Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.]
Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.
Sorry to hear your daughter has CH's. I'm really hoping we can all help each other out here. Thanks for the information & links
I think CH's are such a unique condition that it has to be dealt with individually. People have to be 100% sure of their cycle to truly say something helped with the CH's and it isn't just anecdotal evidence.
I tried to deal with my Clusters with common sense & logic before looking at any studies.
I thought about the main symptom & it's weird regularity: Extreme eyeball & optic nerve pain
The eye is connected to the optic nerve & the signal travels to the hypothalamus.
Some clusterheads get Photophobia before/during attacks but that's not the point - All will be receiving light & sending to the brain....
...People with certain types of blindness cannot get photophobia & thus do not feel the pain of photophobia!(This seems like a big clue to me!)
Then looking into the Circadian rhythm and the temperate decrease makes me think that adjusting your sleep schedule can disrupt the times of daily & weekly attacks, but it's your exposure to light that governs the overall cycle of your yearly Cluster cycle (Circannual)
I've seen studies that show that tiny standby lights can disrupt our sleep cycles. Our skin is an Endocrine Organ, so any amount of light that it's exposed to will cause hormones to be produced in the part of the brain we'd be wise not to poke!
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On 5/2/2022 at 5:18 PM, Shaun brearley said:
You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their
I'm glad you get peace of mind & pain relief from ol' tanky!
I'm certainly not discounting O2 for the future; I kinda see Sumatriptan as my parachute and the Oxygen as my reserve chute for when I'm about to hit the ground!
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On 5/4/2022 at 12:57 PM, Music said:
There in spirit
Thanks. I'll need spiritual guidance to dodge all that rush hour traffic!
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12 hours ago, Juss said:
There are some rules, not necessarily theories, I hear passed around with CH that I don't agree with.
1) Smoking: Listen, if this were the 90s, the Eastern Shore of VA, $10 carton days (when I was coming up) it would be dim lights, thick smoke, and loud music in this bitch. I'd be smoking like a choo-choo. There appears to be an alarming correlation between those with CH and former smoking habits. That stated, it never triggered (my) CH. If it does not cause your CH, who cares, smoke. Your gonna die at some point.
2) Drinking: This one is difficult. For some reason, beer causes massive headaches, but with moonshine I am okay. I make moonshine and drink accordingly. For some, it is wine or those wine benders. I seldom drink, the majority of the time I use the liquor as a trading offer for something else. Bottom line, I do say with alcohol to tread lightly and stay away if getting hit. I'm neither chronic nor episodic, and I don't know how to explain my headaches either, in my circumstances I wing it.
3) Sex: There can't be a God if you get your rocks off and have a massive migraine and/or CH. Honey, that ain't natural. I get myself in trouble here all the time, if that shit happens, we all have needs, and even at 90, that is why there is Viagra-I rest my case. Get some Narcs, and abort with opioid analgesics. I'm sorry that ain't right, and it's cruel. If in a drought, there is the champagne room and sites like Backpage. And since I dug this hole, I don't see why women even date men, as hot as women are. Lord have mercy, especially when hot to trot.
4) Drugs: Party on man. Again, I get in trouble, but if you can control it and it is not a trigger-go for it. Uppers, downers, and turnarounds put me in an 8-year intractable cycle of hell. Unlike most, however, I'm all for the coke and whiskey, fast women parties, and am not afraid to put that out there. The problem is that for most, most drugs appear to put you in a cycle you can't get out of. Getting off of Barbs, Benzos, Uppers, Downers took 1 year of shakes, convulsions, seizures, a few near-death experiences, and a grand mal seizure. And, I now have Tardive. Your choice. I'd do it all over again. What a fucking rush. Talk about kickstarting my heart, I made Ozzy Osbourne and Motley Crew Habits look like choir boys.
5) Abortive Medications: Oh hell no. Go ahead foment wicked rebound headaches. It's your choice, but I had every headache specialist admit off the record that you are best to avoid them. If Oxygen does not work, as in my case, I feel for you. Prophylaxis is paramount. Again, it's your choice, but that Fioricet at 180 counts, and banging 3 DHE a day does more harm than good. Oh, and shooting up Keterolac 1 or 2x per day.
I don't know, I admit to being on the outer fringes but, everything is case-by-case. The intention of this was don't live your life around CH: live your life and adapt to the bullshit that CH brings with it. It is not easy. I am convinced that you can determine your triggers, mitigate them, and then find prophylaxis. It's not easy, may take years, several doctors or nurse practitioners, even functional medicine. Most importantly, you need to be your doctor first: read, research, and find what works for you.
I don't think anything can be categorized or programmatic at times. Everything is subjective to the situation at hand, and the person experiencing the headaches. Good luck.
The only time I don't smoke Cannabis cigarettes is during an attack! Non-smokers getting CH's is all the proof I need.
I refused oxygen & the injectable form of Sumatriptan...Sometimes I don't bother with the suma and face the pain head on and say "Let's roll bitch, what you got"....I'm slowly learning I can't run away from this fight
Moonshine! You're on to something here! I looked into this a while back. All types & brands of alcohol have different levels of histamine, and Histamine cause vasodilation of the blood vessels and nasal congestion.
"Histamine assessment was done in 52 wines (red, white, and champagne) and in 17 beers by radioimmunoassay. Histamine levels ranged from 3-120 micrograms/l in white wines; 15-670 micrograms/l in champagnes; 60-3800 micrograms/l in red wines; and 21-305 micrograms/l in beers"
https://pubmed.ncbi.nlm.nih.gov/8005453/
I think gins & plain vodka has the lowest levels so people should stick to the hard stuff! I quit drinking 2 years ago but I'm very tempted to experiment on myself by getting pissed up!
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18 hours ago, Juss said:
Education has propensities to implement biases, dogmas, and, even pragmatic methods of thought that don't add up to a damn thing. I received a better education by reading books and turning wrenches as an auto mechanic, then HVACR Mechanic. Working in refrigeration and oil heat taught me more about physics than any college class did, the same with chemistry. Oh, and I learned more about polyphase and electrical theory by applying and designing control systems, than some fancy college education. The same can be said with applied calculus in the trades vs in college.
I'm sorry, a college education is an indoctrination to force compliance. It does not prepare you for the reality, most with a degree don't know their ass from their elbow. If you conjured that gumption about Cluster Headaches then you exhibit a higher level of faculty and intellectual capacity. I attended college out of necessity, after two multi-level spinal reconstructions. I hated it, and it was bromidic. I slept through my classes and had full scholarships.
The trades are substantially more challenging than any college course that I took.
Concerning neurological care, I find that neurologists-especially under the guise of Academic Headaches Specialist-make the headaches much worse. All they did was drug my ass to oblivion and cause a few heart attacks. I see a PMHNP for my cluster headaches, after 8 years of failed treatments: she fixed it on the first visit. Nurse Practitioners are always the best. I can prove it.
On that note, the exemption is for my movement disorder neurologist/neurophysiologist and my neurosurgeon with a specialization in complex spinal reconstruction. And the integrative anesthesiologist that does stem cells and platelet-rich plasma medicine, regenerative medicine. For some bullshit reason, I have to see a physiatrist just to have my muscles shot up with what those Alien Face women get, the fuck is it called? Oh, Botox! Movement disorders make your muscles tighter than a tick's ass. And, in our state, insurance requires that for coverage of any autoimmune diseases you see a rheumatologist. Thus, I am stuck with that.
I try to avoid doctors. They take a disease-based approach and are “it has been 15 minutes get your shit and get.” Doctors don't care, want that $500,000 paycheck, and have zero empathy. Most are not qualified. Nurses take a holistic approach, are lucky to make $125,000, and are not in it for the money. And, they study nutrition. Doctors are not even required to take a single course in nutrition: every nurse I have worked with has taken several courses in nutrition and orthomolecular medicine, with hundreds of hours in clinical nutrition. Honestly, I hate doctors.
Honestly, You are my new hero.
With all the shit you've been through in your life it takes serious balls to tell Cluster headaches to go fuck themselves and truly mean it
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Hi everyone, I'm hoping to take part in this years #CureforCluster 5K (3.1miles) run/walk
I'd like to run past (and take photos of!) popular landmarks in London like The Tower Of London, St Paul's Cathedral & Shakespeare's Globe, to try raise as much awareness as possible.
Here is my route but I can deviate if y'all have any suggestion! Maybe go visit the Queen at Buckingham Palace haha. Hope to see you on the day
Register Here: https://runsignup.com/Race/MI/StJoseph/DenverClusterHeadache5k
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Damn me for missing this - I'm not too far from Bow. Hope it went well
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17 hours ago, xBoss said:
I pray that my daughter will not have them. She is two years away from when mine started at age 27
So sorry you have these worries as well as this sh*tty condition, but CH's being a genetic condition might actually be our best hope of an absolute cure - Gene replacement therapy might be possible if the CH gene exists and is replaceable.
There is always hope in despair, stay strong & Godspeed the cure!
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11 hours ago, Juss said:
I recommend Mindfulness-Based Stress Reduction Therapy, MBSR, Deep Breathing, even some of the other cognitive based therapeutic treatments. They work so damn well that you can watch your pulse drop by as much as 50 BPM. Mine drops as low as a well-trained athlete, down into the 40s. Medications are useful adjuncts. Beta Blockers, and H1 Antihistamines are great. Sex works as well, to be direct about it: nothing like free-love man. Why be married when you can different women every night? I will put that out there.
Anyways, walking in nature, transcendentalism type stuff helps. Surfing on uppers is a fucking rush. It is true, every big wave surfer I knew, including myself, was hopped up. What a rush man. Dropping in on a 15-foot crank, Nor Easter, snowing out (true shit), what a rush. Yes, you piss in your 5/4 suit to get it warm: that is true. I hear fishing can relax you. Writing, fire a doobie, just something to take your mind off of everything.
Maybe I read it wrong, but it sounds like you need to drift away sometimes. Not high-anxiety, but as if you need an escape. We all do. My escape is reading. When not knocked out from (whatever is going on with my body) and when I can focus, I can get buried in books, sometimes for days on end without sleeping.
Last, music is the easiest medium for escape. I could go on for hours about that subject. I spend hours each day listening to Waylon, Keith, Mel Street, Vern Gosdin, and Clinton Gregory. It starts there, goes to Neotraditional and Honkytonk, to Southern Rock, and God knows where it ends up.
I hope that this helps. My entire point is I think you have a good chance of her being okay. It ain't common, mostly male, and I think some funny business is involved to get it. Don't want to explain.
Thank you so much for your comments Juss. They're hilarious, sad & informative all at the same time.
I'm not an educated person so I'm just trying to wrap my head around this Clusterf*ck of a condition, and I need to make clear that I'm extremely grateful for the Neurological care I've received thus far and I only discharged myself as I don't want to waste their time
I'm lucky in that I get free meds & don't need to work, but part of my stress is from knowing so many others also suffer with, and in many cases have it a lot worse that me. It just feels like we can possibly prevent or disrupt out cycles.
*Having a hot bath is a major trigger for me, so maybe temperature is a key component - Hot baths cause dilation of the blood vessels, which press on trigeminal nerve?
I'm slowly learning when my attacks are about to happen so I try to stop them in their tracks; Coughing, vomiting/dry heaving, blowing nose etc, which seems to help with the ophthalmic pressure. I always have a cold wet flannel to cool the back of my head and sit in the dark
I also feel that ice cream helps sometimes. The hypothalamus is located above the roof of the mouth....maybe that's just silly but it tastes good lol
Thanks again for your time and the music suggestions(Never head of those artists but I love Townes Van Zandt, so I might give ye ol' honkytonk a try!)
Good day Juss
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Light, Darkness, Sleep & Temperature
I was lucky to be diagnosed within a few months of my first attack in Jan 2020 and prescribed a nasal sumatriptan. My only period of remission came after I lost faith in my Neurological care & decided to look into the science of what is happening during an attack.
I believe Cluster Headaches are a genetic condition which reveals itself due to certain factors like hormonal changes during pregnancy/adulthood & illnesses which lower the immune system (I had a bad case of Cellulitis just before my 1st CH)
LIGHT could well be the main trigger to our overall cycles, but other things trigger our daily cycles: Alcohol, Stress, Temperature fluctuations, et cetera
The 'Circadian Rhythm' is our internal clock located in the Hypothalamus, and is a twice daily temperature shift which allows our bodies to know when 24 hours has passed. (Our Circannual Rhythm tells us a year has passed) (This fits with our twice daily attacks being like clockwork!)
Even the smallest amount of light that touches our skin is registered in the Hypothalamus, and causes cortisol to be produced (2-4 hours before you usually wake is a critical time & any light will negatively affect your natural hormonal balance)
/ Darkness produces Melatonin (Moonlight and a single candle is the only source of light that doesn't disrupt this process)
The average TV screen produces around 600 lux, compared to the Moon, which emits 1 lux of light(Same as a candle)...So go easy on the TV after dark!
COMPLETELY LIGHT-PROOF YOUR SLEEPING AREA!
.my thinking is that light bursting in thru your curtains while you're sleeping could trigger the attack as your brain should only be producing Melatonin at this time. Turn off all appliances & block out any light leaks
My attacks generally fall between 1-5 am & 1-5pm, so I take a break from the light in the early afternoon & I feel this has prevented many, many attacks..
Your location will also play a part in your cycles due to differences in Altitude, Latitude & Longitude - these things dictate how intense the Sunlight is & how many hours of light we're getting. (There is a seasonal aspect to our condition, so we must try to collate data so as to prevent that first attack of your cycle)
Your eyes are actually part of your brain so any light that hits them will send a signal to the Hypothalamus, which might wake up ol' Cluster! [You must reduce the amount & intensity of light you receive after sundown!]
Green & Red lights are better than blue & white light so experiment with Green/Red light bulbs & maybe buy some polarised eyewear that reduces blue light (I try not to let any lightbulbs be in my eyeline as this seems to trigger attacks for me)
imo PTSD is a part of our condition as they both stem directly from the same exact part of the brain(This could explain that 'someone's just died' feeling I get before, during & after attacks)
I'd be happy to answer any question or dig up some official studies to show that this kinda makes sense. Keep the faith my Clusterbuds!
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Hi Monica, I must say I'm somewhat inspired by your post, because tonight I took it upon myself to help myself, with the wider goal of helping the whole cluster community.
It can be stressful to convey our pain to people, but awareness is hard to raise otherwise! Projects like this can be cathartic, but also could literally save lives, so it's a win win situation!
*I've always wanted to be a filmmaker, but since my diagnosis in March 2020 I've felt this is no longer possible. However, tonight I also learned that sadly, the actor Daniel Radcliffe also has suffered with CH's for many years, and maybe it's a pipe dream but at least I'll have someone to send my screenplay to if I ever write one! (Fantasies are healthy, as they give you hope!)
Best wishes and thank you for your post,
David, London, England
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7 hours ago, JF_RegenicaBio said:
Hi All-
Wishing health and wellness to all of my clusterhead friends. I've assumed control of a pharma company with decent resources and a good management team. Please message, email, or call me if you know of any promising phase-I drugs that can be used to help clusterheads.
I'm still attached to this community and still holding out hope to develop a good addition to the standard of care.NOTE: If ANYONE can track down BOL-148 and the patents, please let me know, ASAP!
-J
I know Imperial College, London are conducting studies. Dr Robin Carhart-Harris, is the Head of the Centre for Psychedelic Research https://www.imperial.ac.uk/psychedelic-research-centre/research/
Psilocybin is not even allowed for research in the UK so I think for one study they sent people to Amsterdam, where it's available recreationally. https://qz.com/1918001/psychedelic-therapy-for-depression-is-on-sale-for-the-first-time/
If a slow release Psilocybin pill (or regular dose) was available a bunch of us Clusterheads/Migrainers could travel there, pop the pill and be home in time for dinner at little cost!...I plan on doing that anyway but really there needs to be a Worldwide online resource that diagnosed CH patients can record their treatments into, that other patients & doctors could access (AI will surely be of help if we had all the patient data)
-The Russian version of Sumatriptan's contain derivatives of DMT in them so that might be worth a look?
The UK Sumatriptan for (CH's) market is an endless money pit which doesn't help everyone & long term is no good. Alternatives are much needed.
Thanks for looking out for us, glad someone is trying to put it all together. Good day J!
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My theory of what causes CH's and how to (potentially) disrupt your cycle
in General Board
Posted
My quality of life has improved because of the way I've dealt with the attacks and focusing on the pain during an attack is only way I can deal with it. I feel attacks last longer if I don't.
I've never said O2 isn't proven science, just that I'm not using it at the moment.
Rant over & sorry if I put the Cat among the Pigeons!