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Tony Only

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Posts posted by Tony Only

  1. For oxygen, try the mask. If I used mouthpiece I got 10% relief on whatever the flow rate. Using mask 100% relief.

    For me it was getting high-flow O2 to my pain side nostril. I have been told here and everywhere it does not work that way but for me it did and does.

    Currently aborting with Liquorice Root only like mentioned and have O2 ready. You need to clean up to use Liquorice Root as well. Lately I have been a bit worried because someone who knows a lot mentioned LR is nature's cortisone and thinking it might affect busting. Don't know how I would've made it through last week without it though.

  2. A bit off subject but several CH patients (myself included) who have had their eye pressures measured and being very abnormally high, especially during hits and especially if being high for long periods of time relate this to poor sight in other eye and other eye conditions. I believe extremely high eye pressure is CH related for some of us (if only in the same side eye where CH is) and that it may cause damage. Neither has been confirmed by any of our doctors though, they don't believe in it.

  3. Sorry you had to find us but glad you did.

    I always had the bloodshot eye, sometimes less sometimes more and it was more or less continuos when chronic. MM terminated my chronic state and brought me right on to PF living.

    Here are some options to consider meanwhile you research and read more about MM

    Oxygen is the best attack treatment (for attack abortion)

    http://www.clusterheadaches.com/O2/index.html

    Vitamin D regimen can be of great help (for breaking a cycle and for prevention)

    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

    And so does the Herbal Protocol (mostly for shadows and aborting attacks)

    https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

    RC seeds is the featherweight form of busting (for breaking a cycle and for prevention)

    https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289

    Ever since I broke my chronic CH with MM I have been staying PF with these options.

    I have chosen them because the medications not only did not work too well, had lots of dangerous side effects most dangerous one of them was extending my episodes year by year and in the end turning me chronic. Sadly, medications are made for other conditions and treat symptoms only where as in these alternatives affect the causes.

    Wishing you all the best

  4. Last night I had two wake up calls and the possible attacks had developed so far that I had my O2 ready and mask attached. This is the worst for me in over 3 years (so on the other hand, life's been really easy). Liquorice root was enough to turn both developing attacks back though.

    I have been thinking about this a lot. The connection between smoking and cluster headaches is obvious in my case, I have smoked regular cigarettes 4 times (1-2 days at a time) in the last 2 years and each time this kind of night has followed. (I know, how stupid can one be) I have been wondering why electronical cigarettes do not have the same effect. At the moment I am pretty much convinced that in my case the reason is acetaldehyde. I have been thinking about it for 3 years.

    It's effects also apply on my case to alcohol and different kinds of alcohol. There is also acetaldehyde in food we eat and sugar is a good (evil) friend of it. Different kind of medical or health conditions make some people to be more at risk, in my case playing a major role in cluster headaches.

    Although this is just my belief, it could explain well the smoking & alcohol connection but also why people who don't smoke or drink - or even never have - get cluster headaches. To me it explains a lot why oxygen works. Maybe I have learned my lesson from this 4th time.

    (I just copy/pasted my Facebook post here since not everyone is using Facebook)

    • Like 1
  5. I know nothing about LSD but terrified is not probably a good mind set. Others can advice better.

    Just some options to make it through until you get a hold of new batch of mushrooms:

    RC seeds that contain LSA, featherweight form of busting

    https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289

    Herbal protocol

    https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210

    Vitamin D regimen

    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

    I use all three and recommend them wholeheartedly.

  6. I have to say that ever since I first "met" John in the wonderful internet wonderland, I knew from the day one he was out there to help us all in every way he can and sometimes someone being so sincere and genuine makes the cynical ones think "what is he getting out of this". John has helped countless people totally unconditionally in Facebook, often related to Vitamin D. I have often wondered where does he get the strength to carry on since I can remember several times people questioning his motives, but this MAN just carries on, day by day, helps his fellow sufferers and gives his time to others. So THANK YOU John on behalf of our finnish group and from myself. Keep doing the great work that you do. And special Thanks to you being you ! One of a kind !

  7. The CB Badge in Facebook profile picture was a great idea ! And yes, it's very neat to see the support all over. Here are some the good CH groups in Facebook

    Cluster Headaches 2700+ members

    https://www.facebook.com/groups/17789934480/

    Cluster Headache Avoison Society 700+ members

    '>https://www.facebook.com/groups/2218144759/

    Cluster Headache Support 300+ members

    https://www.facebook.com/groups/24899173268/

    Clusterheads 300+ members

    https://www.facebook.com/groups/clusterheads/

    Cluster Headache - Natural Treatments 200+ members (two language group)

    https://www.facebook.com/groups/ch.naturals/

  8. Thanks for the update and welcome back :)

    Busting did not work on me while on medications, several of them, I was chronic back then. Very important stuff what diamondmaker posted.

    My clusters actually eased a bit when I got rid of the medications. One of the hardest things I have done in this life. After that, busting took care of my clusters. Pain free for over 3 years. Never going back.

    Wishing you all the best !

  9. The Facebook thing is insane. Without naming names, the only explanation in my mind that would even remotely explain that horrible behaviour is that someone is either directly getting a paycheck from Pharma or there is indirect financial involvement somehow. Like Jesse Ventura says, "follow the money", otherwise it would just be too twisted.

    It's really sad that when these people would be able to help other cluster headache patients, they are actually doing the vice versa but it is camouflaged as support which makes them pretty dangerous in my books. We'll just have to keep doing what we do.

  10. I passed the ketamine info on the first time, I guess it is hard to get in Finland. But thanks to everyone again. I also consulted a herbalist from whom I got these advices, they may be helpful for others reading this thread in similar situations

    "Well, in England they use liquorice root to lower cortisone dosages. Liquorice root up and cortisone down. The problem may be the raising blood pressure. I would add all kinds of building materials for the hormones: magnesium, chrome, zinc, B, C, D, iron (unless you have hemocromatosis), fatty fish 2x/week, protein, carbohydrates way down, a lot of vegetables to replace them. And I would fortify the adrenal glands in other ways as well: no stimulants (coffee, cola drinks), more nettle seeds, building funguses (Ganoderma etc.). This should make things at least easier."

  11. I will return to the original subject of the thread. I think we can say that Vitamin D did not help. Mika was able to get his Vitamin D level to 305 but still getting attacks just as much, day and night. The situation is pretty horrible, Mika has 3 very heavy medications which he is not able to detox from and it does not look like he could even lower them. My own guess is that the cortisone is keeping his condition up and it might have prevented the Vitamin D from working. Mika's adrenal gland does not produce cortisol anymore because of the years of external cortisone, so the doctors say he will die if he stops taking cortisone. When researching this, my own belief that cortisone is by far the most dangerous treatment for us has only become stronger, even when used as a short treatments. But I have also read some studies how people can affect directly to their HPA axis (psychotherapy is based on this) so the "power of thought" can do a great deal in cluster headache. I think that as long as the cortisone is involved, hypothalamus and the HPA axis will be in "full tilt".

    http://en.wikipedia.org/wiki/Adrenal_gland

    I am pretty clueless.

    Here is the last e-mail I got from his wife:

    "He can't be without cortisone because his body does not produce cortisol anymore, the doctors say he will die if he discontinues it, we have been trying to get down to 5-10mg per day which should equal the body's own production. He has been able to get down to 15mg but he is getting attacks constantly and his body does not seem to be able to move anywhere and his mental state is very very low. The doctors say it will be extremely difficult to lower the cortisone if he gets down to 10mg. I am hoping his own production will wake up and start producing cortisol again but there are no guarantees that will happen. But we must try to discontinue other medications, when he tried to stop the verpamil he got heart problems so he started it again and the attack treatment Relert also gives nasty heart symptoms when he is longer without it...it is very difficult here."

  12. There is a documentary about Cluster Headaches in the making in Finland, it should be released in December 2013. Also an international version will be released. I will keep you posted.

  13. My neurologists, several different ones, told me not to go to have massage or physiotherapy while in cycle - I was chronic then. I was stupid enough to listen to them for years. I finally did go to physiotherapy when chronic and it was a huge help. I was having 4-8 KIP 10's every day, the worst part of my CH career I have ever had. I had huge muscle locks everywhere in my back. My girlfriend at the time massaged these while I was having hits and we found certain points where massage, when done correctly, seemed even to make O2 work better or faster. We used a magic marker and my girlfriend drew circles around these points when I headed to my first physiotherapy. My physiotherapist had already read about CH and I had my O2 with me. He said almost all of them were trigger points. And I did not need O2 once. Physiotherapy did not even trigger a shadow (neurologists said it would trigger an attack), maybe because we were able to "target" it right from the start. If I would need to or was able to I would go get massaged right away I have nothing but good to say about it.

    IV Cortisone gave birth to some muscle deformations in my back, making already an awful situation worse. The same physiotherapist said he has never seen anything like it, could not tell what they were and he had been practising for decades. They disappeared when I got rid of that poison.

    I would recommend careful massage that aims to find the problem spots to any CH patient anytime.

    So cool you are into this MoxieGirl !  :)

  14. About 20 years ago a female neurologist (rarity back then here) told me about facial features of CH patients, the lion like appearance and showed me an english article in some neurology journal which had face shots of CH patients during an attack. I have forgot her name and don't know what magazine it was but seeing those faces struck me back then, like there was a similarity somehow. Later on I have stumbled to same subject on CH wrinkles on forehead etc. Interesting stuff, thank you for sharing.

  15. I will just add to this. Here in Finland other CH patients quite often judge the ones who choose to bust and use psychedelics to treat their cluster headaches. But here in Finland there is a community of people who use psychedelics recreationally like Libertas and they have been a great help for CH patients. Thank you and everyone else who knows about the subject and is helping us.

  16. Yes, I need to research the subject more too, with thought when my good ol' head works :)

    Abnormality in hypothalamus sounds pretty familiar, more closely HPA axis.

    "In addition, most people with PTSD also show a low secretion of cortisol and high secretion of catecholamines in urine,[60] with a norepinephrine/cortisol ratio consequently higher than comparable non-diagnosed individuals.[61] This is in contrast to the normative fight-or-flight response, in which both catecholamine and cortisol levels are elevated after exposure to a stressor.[62]

    Brain catecholamine levels are high,[63] and corticotropin-releasing factor (CRF) concentrations are high.[64][65] Together, these findings suggest abnormality in the hypothalamic-pituitary-adrenal (HPA) axis.

    The HPA axis is responsible for coordinating the hormonal response to stress.[28] Given the strong cortisol suppression to dexamethasone in PTSD, HPA axis abnormalities are likely predicated on strong negative feedback inhibition of cortisol, itself likely due to an increased sensitivity of glucocorticoid receptors.[66] Some researchers have associated the response to stress in PTSD with long-term exposure to high levels of norepinephrine and low levels of cortisol, a pattern associated with improved learning in animals.

    Translating this reaction to human conditions gives a pathophysiological explanation for PTSD by a maladaptive learning pathway to fear response through a hypersensitive, hyperreactive, and hyperresponsive HPA axis."

    The fight-or-flight response interests me because of what I have read about it, the chemical imbalanses in it seem to be pretty close to us when we are in cycle or in an attack... Les Genser wrote a lot of stuff about hypothalamic-pituitary-adrenal (HPA) axis in Liquorice root protocol. I think liquorice root "works" directly in here and busting may do similar things in similar places. I curse my bad english not being able to explain it better, the way I am thinking :)

    http://en.wikipedia.org/wiki/Ptsd

    http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

  17. Is there any information is PTSD somehow "connected" to cluster headaches ? Like someone wrote on another thread, some clusterheads probably have something that might be described as PTSD after surviving severe CH era. But I am thinking more in a way are there same mechanisms for cluster headache to be born? I finally got around reading about it and the Wikipedia page alone rings all kinds of bells. Any articles, theories, anything, I would be most interested.

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