Tony Only
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Posts posted by Tony Only
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This brick wall analog is pretty perfect to me and I feel more or less exactly the same most of the times.
I've had this dream to do volunteer work for animals somewhere far, far away - this for me would (most probably) mean the lack of trusty old O2 plus the other preventative/abortive treatments (busting) would be unavailable. During last months I have tried how would I cope with my current CH completely "naturally" without O2 and busting. It has not been easy and have not been doing well. I know what I want but at the moment it seems impossible to get there.
Also had to reply on the Yoga subject. I can't give up on Yoga, no matter what. On my CH I have noticed it's not the increased body temperature that's the major issue (although it plays a role) but it's the increased temperature in my head that gets the ball rolling. I changed Yoga groups to a one where the space the lesson is has much lower average temp than others plus I wear such clothes that it's almost chilling when we start - yes, even Yoga can be very physical even when the movements performed are not very physical, it just gets the whole body going.
It's a new skill for me which I probably will always be learning, how not to panic and try to (literally) keep calm using breathing and limiting what one does (what's bad/good for me) during these sessions.
Still occasionally there's kind of a panic when that hypo starts to boil. I give up on that lesson, go to abort and participate the next one again. We should have clusterhead Yoga classes !
Thank you for this wonderful post.
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Id' say this link is good, it has been online around 8 years
You can find other parts via that.
In US good supplier for Liquorice Root & Skullcap is Mountain Rose Herbs (I think), Les Genser recommended them.
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I can do the finnish one.
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Heh, Thanks Fabac, *cheers* for your banana drink ! And PF wishes & *hugs* your way
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Even if the assumption is dead wrong, in my case, everything that helps me to get more O2, then max out on "use efficacy" of O2 has always had positive impact on my clusters. Everything from breathing techniques to physical exercise. Certainly caught my attention
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Well I was just joking around in Facebook when someone (I think it was b.g.) referred to the importance of learning about your treatments before actually doing them as "do you eat a banana without peeling it first"... then I asked from Dr. Google.
Hmm. Dr. Google says banana peels have a LOT of good B vitamins plus magnesium for us clusterheads, but then again, rich in serotonin sounds like trouble. C'mon, do I really have to get me a blender and test this mother out 8-)
http://www.dailymail.co.uk/health/article-1325741/Eating-skin-fruit-vegetables-combat-cancer.html
http://www.livestrong.com/article/457082-what-are-the-benefits-of-eating-banana-peels/
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Both Chlorophyll supplements and Budwig protocol are news to me. Old timers probably know better ?
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I have to give big thumbs up for Tranceplants. We have around 25-30 patients (in Finland) using their product as main treatment regularly, some have for years already and the quality has not once let us down.
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I contacted him on Facebook asking for him to come here. He's had rough time overall and is using internet in library but I'm sure he will drop by and message you back
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I would suggest you to make an account to clusterheadaches.com and ask about this from Batch (creator of Vitamin D regimen) directly. We are blessed for a chance to be able to do that
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
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I do have a probably dumb question....because my timing is way off (as usual)..if there was someone I maybe knew that maybe had some connections to get me something that would provide a hallucinogenic effect....would that work?
If I understood the question correctly, I would not recommend just "getting something" that gives hallucinogenic effect hoping it will help CH. Stick with ones that patients have discovered, which have science backing up their mechanisms of action, LSA (RC seeds or HBWR seeds) probably the easiest (and most legal) first option. Psilocybin when you have a way to acquire it.
The hallucinogenic part probably has little to do with us getting relief from hallucinogens since most use them (especially when preventing) on sub-hallucinogenic doses.
Wishing you a pain free journey
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I have to add that when I was chronic the longest PF stretch I could achieve which official treatments was 4 days (IV steroids). Like you stated everything worked for some time but when chronic there was nothing. My first busting resulted in over 3 years of 100% pain free life. Although CH came back, it's under control now and so far busting has never failed me *knocking on wood*
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I will let others advice you, just wanted to say welcome and glad you found us.
I would imagine there's lots of fellow headbangers near your area here.
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UK patient I was trying to connect with others now has a profile here
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Male CH sufferer in UK Birmingham contacted me and is looking for other patients in UK who could help him with busting. He is in a bad place right now and is having trouble registering here in the message board. I have his e-mail so if you are in United Kingdom and would be kind enough to help, PM me and I will give his e-mail.
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I think we need something physical in the birth of CH pie chart as well, be it just a gene or for some reason funked up hypothalamus but in last few years I have started to think more and more that the emotional/mental part may have such a role that it's almost ridiculous how overlooked it is. Or little discussed. But totally loving this thread as well !
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Also good points. All three of those studies, and especially the 2nd and 3rd, identify activation/abnormalities in the hypothalamus DURING AN ATTACK, even in the third where they induced a "mild NTG headache" in episodics who were out of cycle. An attack is an attack. So in my opinion, saying there is unusual hypothalmic activity during an attack is like saying we experience lacrimation during an attack. Of course we do. Show me a measurable difference in the hypothalmi of CHers vs. non-CHers, and I'll start to believe that there is a physical cause. And then we can laser that sucker out and be done with it. Â
...or for other reasons hypothalamus just happens to be the affected part ("in the line of fire") and since it is our internal clock the pain manifestations happen scheduled by it. I am recalling Genser suggested something like this when describing the "inside out" and "outside in" triggering of our attacks in episodics vs. chronics
I wonder what would happen if we took a small sample of cluster headache patients and treated them solely for mental/emotional problems? If we addressed the root cause and also prescribed medications designed to repair the frazzled neural circuits in the brain, and not just suppress pain symptoms. It would be interesting to find out.ÂI have thought of this too. If there would be a chance for this kind of treatment to affect anyone's CH I think it might have to be really deep, similar to what we are doing right now, fast-forward-psychotherapy with psychedelics. But it would be super interesting.
Questionnaire to those fortunate old timers whose CH has disappeared at certain age would be interesting as well, some interviews in Gabor Maté kind of way to let the patients speak and maybe find something in their stories.
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Oh my, 3rd reply in a row, maybe I need to cut down on the coffee.
Anyhow, I was just a reader on different boards for years, trying to figure out why my CH was going worse. At this time I started to form an opinion that people who used no medication seemed to stay the same from year to year and from decade to decade and people who used prescription medication in growing amounts (bigger dosages or added meds, not replaced) seemed to go worse in a relatively short amount of time.
Even with all the information I had gathered, I could not detox completely myself and quite sadly witnessed everything I knew to come true. My 1st cycle was only 2 weeks and all the years I was not medicated it was always weeks, never more than 4 weeks. With prescription medication cycles started to grow immediately plus the severity of the hits grew; always when I thought there's no freakin' way it could get any worse it did. I believe it always can if doped enough. Just before turning chronic my cycle lasted 8 months (it had been 6+ months for years). When I was chronic I was more medicated than ever. Having more hits than ever (1hr of Pf yet shadows were present 24/7 was very, very rare luxury), harder hits than ever and even the classics (oxygen for an example) became ineffective. With enough meds in my system I could have hits for weeks which O2 did not even start to touch.
To cut a long story short, I had to be pushed to the point where there was either a slot 6 ft under or life and started the long, long road of detox (months for most meds, years for others) and was finally able to bust. I was almost ready to be satisfied with how things were after detox; hit frequency had come way down, O2 was working again, dozens of side effects fading and disappearing. But since had made up my mind about busting went ahead with it and received over 3 years of 100% PF life. Looking back now, that makes no sense, I had never had a 3 year break even when starting as episodic.
Now that CH has returned, during this year for an example, when I get hit at night I don't always bother to get up. I wait. If I need to get up, low flow O2 will deal with everything in few minutes. I even aborted with Liquorice Root only for long time. For me, this is an astonishing evolution from attacks which always lasted for hours during which time I was completely incapacitated (kips 9-10) to something that bothers a bit.
When I reached PF I became much more active in patient communities. I have spent and will spend majority of my time in our finnish groups and never have I been more sure about the effect of prescriptives on evolution of cluster headaches than I am now. Of course there are wildcards, people who differ from majority but my cautious estimate would be something like 90% are affected in a bad way by the prescriptives.
I am overjoyed seeing people have even more wonderful results than me just in the detox period. It's just a scary thought for most. We have countless stories of how the evolution have been able to change vice versa, from going worse to getting better. Shorter to non existent cycles. And I am of course talking about all the other treatments than the official, prescription medication treatments. Out of all the members in our groups, I do not know a single one who has had success with pharmaceuticals (without a cost). I'm talking about long periods of time about everything in this post, 10+ years.
I'd love to have the wit or even connections to start taking all these information up from people and getting something out of it all. Maybe some day (we have some projects thought up).
The only thing I can imagine that can be distorting the information available for me in recent years is the nature of our group, we are very solution centered and (can't think of a better word) filled with hope. So people who embrace their CH as their fate or feel there is nothing in this earth that can help them or at least will never try, would not come into our groups or if they do, they don't stick around.
This evolution "ability" or potential triggered by certain pharmaceuticals is in my opinion one of the most over-looked aspects of clusters. I love all and any discussion about this and sorry for this long preachy rant, last cup of coffee I swear.
Be well, ya'll
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Only now, stress isn't a lion chasing us for 60 seconds, it's a low-level but constant grind, present 24 hours a day. But we still have the equipment for the 60-second sprint. Everybody has a different response, but people with idiosomatic disorders (like CH) seem to respond negatively with physical symptoms. By this definition, early in life or late in life doesn't really matter, it just happens when our brain says, "OK, that's enough of this crap!"
If I imagine these "cavemen" and a sudden lifethreatening event, I'm thinking they reacted 10 out of 10 times - to everything. Those who didn't, died. What if we get lifethreatening events or anything that gets the same juices flowing in our brain, but we don't react at least in a way "nature intended" but we hide our reactions, because that's how it goes in more modern society. Our command center for fight or flight, the hypothalamus, gets all f**ked up in the aftermath and in the very end of the loop all the warning signs morphed into wrong or mixed signals manifest themselves as severe head attacks.
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I have NEVER ever had a "normal" sleep cycle. Cant shut down the mind enough to drift off...so I tend to do without until I am ready to drop, then sleep, but usually only for 4-5 hours.
I'd say this is the stress right here. I have to sing the same song as Lieutenant2 here, too often we associate stress as something we are aware of, or something we have "brought on to ourselves" meaning we can figure out where it comes from. There are many types of it, not just conscious one (when you "know" you are stressed). There's unconscious stress, subsconscious stress and the episodic stress is actually good, it's the chronic one that can cause stuff. Not having a normal sleep cycle for an example would fall into these categories.
I'm always thinking that I sound like a broken record when I urge clusterheads to read 'When Body Says No'. It was a real eye- and mind opener for me as well, concerning cluster headaches, even when it does not directly cover them at all. The ideas like stress is a measurable attribute, can be found in plants for an example, how it to some degree may even "draw our fate" (poor allegory with my poor english, sorry guys) was mindblowing for me. It just explained a lot of things I had never figured out or drawn the line from a to b. Everyone, get the book and read it. You can read the first chapter online on this page:
http://drgabormate.com/preview/when-the-body-says-no-chapter-one/
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I think when we are using something that affects our receptors (imitrex), overuse in long term can be quite harmful but our bodies & brain also has almost miraculous ability of healing over time. People who choose different alternative treatments routes and because of them are required to detox from triptans report a change after the 5 days, but 5 weeks or 5 months can make yet another difference.
I think majority of people on this board are from US (I'm from Finland) so I'm sure someone will help you with Oxygen questions in no time.
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Ha ! Very true Lieutenant2, we have had scaringly similar thoughts sometimes ! Always appreciate your cool input. The whole first chapter is some of my thoughts exactly... I have sometimes thought what if the result (pain) and the condition is being born might be something like we ought to REACT big time to the stress response, physically, emotionally - maybe scream, be violent, fight or escape, handle our feelings, traumas, get those chemicals flowing, whatever - different for everyone; when we don't "follow our instincts" it leads to repeating god-awful pain suffered in silent darkness.
Way before the internet and before ever connecting to another patient I spent time in libraries reading about similar symptoms and whole stress system (way before having name for my condition or seeing the first doctor). I always remember how one of my thoughts was that "Man, I've had some horrible things happened in my past, I have not dealt with them, could this pain be something forcing me to cry about all of it since I can't even cry nowadays".
Even when/if the hypothalamus is heavily involved, it seems that in the medical field there's always the danger to focus too much on one organ for an example and separate the emotional from the physical. I think it's really important to have this kind of discussion going on patient communities for that reason
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Melatonin may help you for those nights. I think the needed dosages are rather high, 9-24mg per day, I'm sure others know better. Melatonin does not help everyone though, I'm thinking it might be the ones who have decreased own production via hypothalamus who receive most benefits.
Couple of doctors/researchers who I think higher of than the rest say that absolute maximum in triptan use for cluster headaches is 2 doses per week for them not to affect the condition. We all know that does not do it for us when we are in cycle and we use them daily.
Herbal protocol covers some issues concerning those aftereffect headache symptoms you mentioned.
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Lately I have been thinking about the homeostasis in human body, the state of "equilibrium" which Les Genser for an example often mentioned. I have always thought that when dealing with clusters, sleep is absolutely The Treatment number one which we often do not remember to mention. Sleep is crucial for maintaining homeostasis. What if cluster headaches lead to homeostatic imbalance due to lack of proper sleep? (One might think what if they are result of a homeostatic imbalance in the first place) What if in different treatments that are effective the treating component is only partly responsive of the healing and the rest of the work is being performed by our own bodies? This might explain the reported record-breaking long stretches of PF after first busting for an example, and how clusters can "get better" after getting rid of lots of medications. And maybe lots of "official" medications also prevent the body ever reaching homeostasis (what your body IS trying to do every second of your life) and may lead the condition to get more severe and even turn chronic. Some of the big puzzles may be rather simple in the end. Any thoughts ?
A brick wall between me and life
in General Board
Posted
It's so much about the teacher; my 1st yoga teacher walked me inside. She showed me how yoga is more of a state of mind, anything you do in practice is secondary, peace of mind is essential. Now for me it's more meditation - a trip, really ! All the other teachers I have seen after her pale in comparison, for some it's just gymnastic exercises.
I often think nowadays if only I would've had this world when struggling with CH