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DJ Cluster

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  1. 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!
  2. 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/
  3. 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!
  4. 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!
  5. 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
  6. 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!
  7. 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!
  8. 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!
  9. 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
  10. 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
  11. Damn me for missing this - I'm not too far from Bow. Hope it went well
  12. 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!
  13. 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
  14. 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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