Tony Only
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Posts posted by Tony Only
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Don't wait another hour to get the oxygen, don't wait for the next doctor's visit. Get it know, asap, every triptan (imitrex) used to abort is too much in your situation and will either keep it bad or make it worse. When you start aborting hits with oxygen you can take your next step. It may take a while for oxygen to build up efficiency, in other words when your body keeps on detoxing from triptans, oxygen will work better and better.
Oxybar might be fun but won't help in clusters. CH attack also has little to nothing to do with saturation how oxybar's sell their idea. To treat an attack you need high-flow oxygen like CHfather advised. Meaning a lot fo oxygen delivered into your body, fast. It's measured as litres per minute (lpm). Usually in clusters we need 15 lpm or more. Sufficient oxygen treatment at home will change your life.
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Welders oxygen or any kind of DIY O2 is not possible here so this is huge. So far if you are not able to get a prescription for it it has meant no O2.
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Humble Thank You for your kind words Bejeeber but it's not just me, over the years we've built a great community in here and I couldn't be able to do anything without help from others as well. Together we are strong
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Like everywhere, it has been and still is often way too difficult to get a prescription for oxygen treatment in Finland. Sounds silly, but often the underlying reason is that doctors don't know "how" to write this prescription, what they should fill in the text field. They don't want to reveal this so they simply have not written a prescription. We have been working to improve this in recent years by sharing our "oxygen prescription for dummies" documents with example text fields for prescriptions and even images of oxygen prescriptions available for doctors. I just received an e-mail today, now it is possible to get the oxygen treatment here even without prescription. Especially in long term use it's still wise to get a prescription for oxygen though, since by having it, finnish social insurance institution (Kela) will pay part (40%) of the costs. Now every cluster patient in here can finally get oxygen if financial situation allows (it's high priced). Maybe this will happen, or is already happening, in other countries as well.
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Suzz: treating attacks with oxygen is just as effective as treating them with injections. I would never ever advice to use both, when you get O2 start detoxing from injections. O2 will be more efficient alone and does not have risks for keeping the pain cycle on like injections do. Way too often people who have been on injections (or other form of triptans) for a long time try oxygen and give it up too fast (if triptans are "weakening" it's effectiveness). It's a project but in the end you are able to abort at least as efficiently if not more so than with injections. And how much better you will feel will make all the difference in the world.
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What a wonderful advice from CHfather, oxygen certainly is the best tool for you to start climbing from that evil hole. If your injectable is a triptan (Imitrex or similar) that may also be the cause or at least contributing factor for your 3 year suffering. While triptans still continue to work as an abortative, they have a nasty tendency of keeping the pain cycle ongoing, even causing additional attacks and/or intensifying the ones already happening. Lots of people contribute changing from episodic to chronic to continuous triptan use. And the O2 (oxygen) usually starts to work more efficiently when detoxing from triptans. Wishing you all the best.
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Right now feeling hopeful for year 2016. I think I have finally been able to start gathering up some pieces of my life that 20 years of uncontrolled clusters led to and the havoc that all did. I'm hopeful to start understanding and solving other related issues, mainly PTSD and depression. It's strange understanding there are these big parts of my life that I have not admitted so far or even begun to understand. Why I am hopeful and being able to do this is because I am still alive. And for being alive I thank Clusterbusters and this wonderful community. THANK YOU everyone.
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Happy holidays and wonderful new year to everyone reading the forums !
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Here is an additional file that can be shared to ayurvedic practitioner or doctor, since cluster headache is also a rare condition in Ayurveda and not all are familiar with it. This file contains treatments that can also be carried out at home by patients as self-treatments.
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Here it is. Ayurveda is an ancient indian medical science and health care tradition. We here in Finland were blessed to find an Ayurvedic practitioner Ossi Viljakainen who took interest in cluster headaches 2 years ago and now has compiled this work for us. Ayurveda does not see clusters as incurable. Also the first writings about cluster headaches in Ayurveda are dated back to 1500 BC (there may be even older ones).
Any and all research would be so valuable and to find patients to participate in this. Ossi did this work and put this together for us.
If there would be weaker response I would imagine that might be among medication resistant patients who have turned out that way due to heavy long term over use of prescription medications since ancient Ayurveda treatments naturally could not take attention of prescription drugs.
EDIT: File was too big for upload as an attachment so I have placed it here:
http://tonyonly.pp.fi/ch/AYURVEDIC-MEDICINE-for-Cluster-Headache.pdf
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I will deliver some additional information here when I get it. My knowledge about this subject is so minimal.
EDIT: A member of this forum sent me this link: http://www.ck-wissen.de/ckwiki/index.php?title=Bericht_Nalana
You can translate the page for an example with https://translate.google.com/
2nd EDIT: I sent the link to finnish Ayurveda practitioner, he said this is only the nasya treatment. This can be taken lot further. He wrote to me "If diet + one herb + nasya can do this, imagine what 21-28 days of ayurvedic treatment could achieve?"
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First of all, I have to say as far as I know, when treating illnesses, Ayurvedic approach does not aim to treatment, it aims to curing the condition. I had to make this post when I saw people making fun about Ayurveda in Facebook Cluster Headaches group. I think a great place for more serious discussion about this would be here in Clusterbusters forums. As a personal opinion, I think Ayurveda would have a lot to offer for CH patients and I have seen some of this potential myself. This is something we would seriously need to look into. I have heard wiser people than me say that Ayurveda might have a chance to "cure" CH, although I am doubtful, I am not ruling that one out. Here in Finland we were blessed to have a lecture put together for us by 2 Auyrvedic practitioners in finnish CH convention. Clusters were (at first) new to them and naturally Ayurveda new to us. It turned out that Ayurvedic medicine has known clusters pretty much longer than western medicine, which is not surprising at all (after all, our "system" and knowledge is based on these ancient ones). When practitioners started to look for clusters in old Ayurvedic texts (dated back thousands of years) guess what herb they have used to treat CH? Yup, liquorice root. Ayurveda is much about changing your life, getting to know your body type (and yourself), adjusting your diet - many of the the things that will definitively link to anyone's CHs. There is a possibility to arrange a study about this. Anytime. I can also deliver more information about this if there is interest to learn more. I truly wish some people would get into this. For me, Ayurveda is probably the healthiest way I have ever heard of with what anyone could treat their clusters.
I simply have to repeat; it's possible to arrange a study to see how Ayurveda actually could help in cluster headaches. How valuable would that be to the whole CH community? Based on what I know about clusters and the little I know about Ayurveda, I can't even imagine.
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Thanks CHfather, I hope you are doing well too. I'll try to write a bit in the general board. Been away for too long.
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It's the detox, being off triptans. We have (finnish) patient group in Facebook (around 400 members at the moment) that is hidden and for those CH patients only that either use busting as their main treatment or plan to do so. This is one of the most obvious things noticed in our group (and keep in mind, majority have no experience in busting when they arrive) for few years now. We have not observed the other though, O2 being somehow more efficient due to busting. It is so obvious to us that we tend to promise the hits will be much easier after detoxing from triptans. It's also troublesome, outside the hidden group, since an average CH patient demands some kind of research to back this up.
This is also one of the key pieces of such information (and there are several) that needs to be available to the patients. This is the problem (for us), that seems to grow as time passes; we have data from a patient community (such as this) that is consistent, year after year. This data is not accepted even for an evaluation in the "official" channels. And it is not allowed to share publicly without research or "official" backing up. -
I don't even know what this is about but sometimes we need a break to clear our heads ...
.. that said, sharing personal/private messages anywhere is not ok ... in my books
The kind of "protection" administrators provide for us members needs to be highly appreciated and can be a tough job. The bigger the crowd and attention CB gets the harder that gets.
So my both thumbs up for everyone running the board and contributing
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BOL-148 (2-bromo-lsd) is already familiar to so many healthcare folks so let's just hope there might be a some kind of fast forward with it.
In case you have not heard about 5-MeO-DALT you might like to read up on that, it's an interesting and very promising new option, now being introduced to doctors and researchers I think.
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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
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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 ?
PSILOCYBIN? Magic mushrooms? Do they work?
in General Board
Posted
In my last cycle last year I used energy drinks almost only as preventatives. I felt kind of stupid why I had not tried that ever before. I got the idea to try them out from migraine sites where lots of people aim to prevent their migraines with coffee. The other reason why I went at it was that my usual preventative, liquorice root tincture, was not responding well so I started thinking maybe dilation was a bigger issue for this particular cycle and for me. I would suggest just about anyone who can tolerate energy drinks (especially if they already work on hits but also if they don't) to try them as preventative as well for at least a week - if hits come like clockwork it should show it's response easily. But they took me a few days to reach the optimum prevention. I still don't understand how they worked so well though, I got shelter for hours. It can't be just taurine?
I can't recommend topiramate for clusters, for anyone, but that's just me. Lots of great news Suzz !
EDIT: At least on me when I used energy drinks as preventative, I didn't need to use the whole drink, or the same amount used to abort. For me 1/3 - 1/2 of the abort amount worked as a preventative, fine tuning that based on the strength of the shadows.