Javier Posted September 10, 2012 Share Posted September 10, 2012 Hello from Spain Thanks for all this information! My cousin suffers CH from 11 years old. Now he is almost 15. Never well treated,at the beginning was one year and a half suffering attacks while facing the ignorance of doctors(confined for days in an isolated room, treated with cortisone) Now he has thyroid problems. Apparently he is episodic, suffering the CH from December to march. Verapamil provokes him heart problems and past CH period, towards the end, had a syncope. His parents are less than terrified, his dad falling in severe depressions each cycle reach the top, and reluctant to talk or research about CH. The cycle threw the whole family in a period of suffering and silence. They live in the south of Spain, in Almeria; now I am visiting them. Unexpectedly one week ago the child broke in tears saying he had shadows for a week. Now attacks started. He is not medicated now. Only for his thyroid. From Spanish forum I reached this one and read many of your posts about mushrooms. Do you know any case of a child treated with mushrooms? How to dose, etc? we can order from Netherlands some fresh mushroom truffles ( do you know this? should we prepare as mushrooms?) , and receive them in a week. If the CH is beginning its cycle maybe we could try... If anyone has an idea or advice... Thank you! Quote Link to comment Share on other sites More sharing options...
Salander Posted September 10, 2012 Share Posted September 10, 2012 How awful, for a child to have cluster headaches. I really feel for him. I hope this community can help. I do not like treating clusters with current medication, cortisone (the worst), verapamil (heart drug), epilepsy drugs and what not even on adults since they are all medication NOT made for clusters and 99% only treat symptoms and bring horrible side effects (at least on the long run) and in child's case it probably is even worse. Great that you are looking for alternatives. I don't know how dangerous it can be treating a child with mushrooms or seeds. But oxygen is safe. That will deal with the attacks. Then there is liquorice root protocol (can't be used with meds though), vitamin regimen (I assume it's way safer than prescriptives but don't quote me on this), energy drinks (with taurine, for the attacks) and melatonin. He is on my prayers. Wish you all strength to endure. Quote Link to comment Share on other sites More sharing options...
Salander Posted September 10, 2012 Share Posted September 10, 2012 I found a bit maybe a little relating so I quote our admin from our natural remedies for cluster headaches Facebook group: Memories from the nineties. On finnish TV channel 1 there was a documentary (1998-1999?) about cluster headaches (back then we had a different name for them here in Finland, forgotten by now) and it already back then described the changes in hypothalamus' size and temperature during a CH attack. What I still remember best about it is 2 details; the only group of people (except CH patients) who had these changes going on in their brain were cab drivers (!). The doctors in this documentary said it was because of the huge maps they had to memorize (way before navigators). The other thing was Mexico City, back then it was the only big city on the planet who had children before school age having these weird headaches treated with oxygen, which turned out to be CH attacks. Doctors said they were caused by pollution, Mexico City being the most polluted city on the planet back then. It would be really interesting to learn more about relationship between not-so-voluntary learning and air pollution and cluster headaches. I was trying to google the percentage of smokers among CH patients and stumbled into an article that says Cluster headache patients have "distinctive facial features" and even describes these features. It might sound like a lot of bull, but in the same (golden) nineties my neurologist gave me an article (and I have sweared countless times not finding it anymore) which had facial shots of CH patients during a CH attack side-by-side. Seeing all these peoples faces side-by-side really woke an weird feeling that there is "something in this", hard to describe. There even was an elderly woman who looked a LOT like me I have later thought by myself that pain attack leaves a certain "trace" to CH people's faces as wrinkles etc. but that we would have similar facial features is news to me. This might be nothing but check out the link below ! http://www.emedicinehealth.com/cluster_headache_faqs/page5_em.htm Quote Link to comment Share on other sites More sharing options...
spiny Posted September 10, 2012 Share Posted September 10, 2012 Javier, Can he get O2 prescribed for his CH? With a proper mask and proper breathing techniques the relief is miraculous. If energy drinks are out (taste,stomach issues), coffee works quite well too. Add all the cream and sugar you want. These two things will help a lot with shadowing, especially when used at the very beginning of the attack. In addition, many of the nasty drugs should be off limits due to his age. Many are not approved for use in patients under 18 and for good reason. As for alternative medicine used by many here, we will have to wait for them to post for you. My heart goes out to him and his family. Being a teen is bad enough without the beast in the middle. Wish I could be more helpful. spiny Quote Link to comment Share on other sites More sharing options...
Potter Posted September 10, 2012 Share Posted September 10, 2012 Hello from Spain Thanks for all this information! My cousin suffers CH from 11 years old. Now he is almost 15. Never well treated,at the beginning was one year and a half suffering attacks while facing the ignorance of doctors(confined for days in an isolated room, treated with cortisone) Now he has thyroid problems. Apparently he is episodic, suffering the CH from December to march. Verapamil provokes him heart problems and past CH period, towards the end, had a syncope. His parents are less than terrified, his dad falling in severe depressions each cycle reach the top, and reluctant to talk or research about CH. The cycle threw the whole family in a period of suffering and silence. They live in the south of Spain, in Almeria; now I am visiting them. Unexpectedly one week ago the child broke in tears saying he had shadows for a week. Now attacks started. He is not medicated now. Only for his thyroid. From Spanish forum I reached this one and read many of your posts about mushrooms. Do you know any case of a child treated with mushrooms? How to dose, etc? we can order from Netherlands some fresh mushroom truffles ( do you know this? should we prepare as mushrooms?) , and receive them in a week. If the CH is beginning its cycle maybe we could try... If anyone has an idea or advice... Thank you! If I knew you done this I would call child protective services. Potter Quote Link to comment Share on other sites More sharing options...
Javier Posted September 10, 2012 Author Share Posted September 10, 2012 Thank you, Salander and Spiny! He has tried the O2, but don´t know if correctly and with a good mask. I have read about the liquorice in this forum, I have it printed, maybe would the right option by now... Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 10, 2012 Share Posted September 10, 2012 If I had a 15-year-old suffering from CH, I would try RC with him or her without hesitation. Of course, I'd get the O2 set up properly and maybe try energy drinks (although I suspect that overall, energy drinks are more harmful than RC). And of course, I'd start at low doses with the RC (10 to begin with). I think it's very unlikely that this young man will have any psychedelic experience with a small dose, and so I view RC as "medicine," not a recreational drug. The thing about licorice root is that it increases blood pressure. Since this young man apparently had (or developed) low blood pressure, maybe raising it isn't a problem, but I'd be very careful with licorice root around a heart issue. I would guess that the D3 regimen might be more advisable than the licorice root -- but that's just a guess. As the parent of a young person (now older, but she was quite young when it started), I completely understand the father's depression. But he needs to step up and help find a way out -- because there is one. You can read about oxygen basics here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 D3 here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Quote Link to comment Share on other sites More sharing options...
alleyoop Posted September 10, 2012 Share Posted September 10, 2012 I agree CHf. Very good and thoughtful post. Quote Link to comment Share on other sites More sharing options...
Javier Posted September 10, 2012 Author Share Posted September 10, 2012 CHfather, alleypop, thanks, I will read about RC, just read all the log post about liquorice by Les Genser and am also reluctant cause the problems of heart this child has. But I am very grateful for your quick answers, sure Alex parents also will be when I tell. Thanks again! Quote Link to comment Share on other sites More sharing options...
blueballs Posted September 10, 2012 Share Posted September 10, 2012 I would think using alternative therapy with one so young would be a total last resort. 02 therapy should be the primary abortive, investigated and applied properly it is possible this could make alternatives unessasary. There are many other options for treatment that could provide relief before jumping into alternatives. I would not recommend anything considering the limited information provided here. I do know that many kids have experimented with psychodelics as young as 15. Some having no detrimental effects and some having serious problems during and after ingestion...It just doesnt seem the right thing to do until more traditional treatments have been exhasted. RC seeds have a lesser psychoactive effect, that would be the better alternative as stated by chfather. Thoughts and prayers are with you. READ THIS FIRST! TRYPTAMINES ARE NOT FOR EVERYONE Do not use tryptamines if you are pregnant; they can cause miscarriage. Do not use tryptamines if you suffer from or are prone to mental illness. Tryptamines may interact with other medications. Tryptamines have physiological effects. People diagnosed in the past or present with a psychotic disorder, or people with biological parents or siblings diagnosed with a psychotic disorder should not take tryptamines, including LSD, psilocybin, DMT and LSA. Psychotic disorders include schizophrenia, delusional disorder, affective (mood-related) psychosis and others. Tryptamines may exacerbate symptoms of psychosis or trigger psychosis in people who were psychotic in the past, or with immediate family members who were or are psychotic. Taking tryptamines during or immediately after a period of emotional upheaval, such as a relationship breakup the death of a loved one, may intensify negative emotions, even to a proportion that feels “out of control.” Tryptamines should only be taken when one feels confident and secure in his or her ability to handle a psychedelic experience and is confident in the stability of one’s mind set. Tryptamines should be taken only in a place where one feels secure and with people they can trust. Tryptamines and some of the chemicals found in natural substances containing tryptamines can cause miscarriage. Do not take tryptamines if you are pregnant or think you might be pregnant. Use of some tryptamines is known to increase heart rate and blood pressure, so consult with your doctor if you suffer any conditions that would be negatively affected by this. Reynaud’s syndrome (cold-triggered reduction or loss of circulation in fingers and toes) will be made worse by taking a vasoconstrictor, and tryptamines are vasoconstrictors. People taking lithium, whether for preventing cluster headaches or for some other reason, should not use tryptamines. Anecdotal reports suggest lithium can greatly increase the psychoactive effects of tryptamines and that it can produce very unpleasant feelings, or even symptoms similar to epileptic seizures. Tricyclic antidepressants, such as Trofanil (imipramine), Anafranil (clomipramine) and others, and MAOIs taken along with tryptamines, may greatly intensify the psychoactive effects. People with serious liver problems should avoid psilocybin mushrooms as some might have compounds that could affect the liver. http://clusterbusters.com/start Required reading before busting with anything. good luck bb Quote Link to comment Share on other sites More sharing options...
Javier Posted September 11, 2012 Author Share Posted September 11, 2012 Thanks, Blueballs, I have questioned about O2 masks to the mother and they used a current one, without the bag. Besides, they are going to check the boy heart, because it could be the worse problem facing the tryptam. therapy. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted September 12, 2012 Share Posted September 12, 2012 Has the child had an MRI? Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 12, 2012 Share Posted September 12, 2012 Javier, I'm afraid I don't understand this: >>I have questioned about O2 masks to the mother and they used a current one, without the bag<<  Because O2 can be crucial for this young man's wellbeing, can you please tell us more if you are able. What is the flow rate, in liters per minute (this should be marked on the regulator)? I don't know what "a current one, without the bag" means? Here is a link to a picture of the kind of mask that he probably should be using: the second photo, where it says "Non-Rebreather Mask." Does it look like this? http://www.sharinginhealth.ca/treatments/oxygen_administration.html I say "probably" there because he might have a system that doesn't require a bag (a "demand valve" system), but that seems unlikely. Does he get relief from oxygen? How long does it take? Does he breathe in any special way while inhaling the oxygen? As spiny says, the relief from O2 can be miraculous. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 12, 2012 Share Posted September 12, 2012 Whooli has a very good point. MRI and MRA are both very important tests to rule out other problems. While the MRI is very common it seems the MRA is not so common. I would be very concerned if these tests had not been performed as part of the diagnosis. In addition, a mask without a bag is not going to support the needed breathing technique for CH. He probably needs to hyperventilate at the beginning of the O2 therapy to get adequate relief. No bag does not normally support this unless he has an on-demand valve system. In short, the bag allows for hyperventilation. It fills with O2 and allows the patient to inhale deep and rapidly with the pain. Then, while exhaling it fills again, if the LPM is high enough. A flow of 15LPM or less will not support this type of breathing. For good O2 flow at the beginning, 25LPM or more is usually needed. This is very important for us. We need to inhale deeply and exhale fully to get the benefit. As the pain recedes, the flow is dialed back to match the breathing of the patient. If he cannot get a mask that will allow this, you can 'rig' a hillbilly set-up. Let me know. O2 saved my life last year, so I am very strongly opinionated on this subject. It is safe and cheap without the nasty $hit you get from meds!! Used properly it will make a world of difference for him, assuming that the diagnosis is thorough and correct. Prayers to the Powers above. spiny  Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted September 13, 2012 Share Posted September 13, 2012 Get the oxygen right! This is the quickest and most effective thing you can do for him. DON'T LEAVE HIM HANGING WITH NOTHING!!!!! That is how they get the name "suicide headaches". This needs to happen NOW! As for the alternative treatment... I understand being careful, especially where a child is concerned, BUT come on... at the doses we are recommending? I would say that with a 1/3 dose... 10-20 RC seeds, or 0.5g shrooms (or equivalent in truffles), he would still be getting more side effects from his thyroid meds. I would say stabilize him on oxygen, then let him learn about the alternative and decide for himself. 15 is not THAT young. Quote Link to comment Share on other sites More sharing options...
Potter Posted September 13, 2012 Share Posted September 13, 2012 Get the oxygen right! This is the quickest and most effective thing you can do for him. DON'T LEAVE HIM HANGING WITH NOTHING!!!!! That is how they get the name "suicide headaches". This needs to happen NOW! As for the alternative treatment... I understand being careful, especially where a child is concerned, BUT come on... at the doses we are recommending? I would say that with a 1/3 dose... 10-20 RC seeds, or 0.5g shrooms (or equivalent in truffles), he would still be getting more side effects from his thyroid meds. I would say stabilize him on oxygen, then let him learn about the alternative and decide for himself. 15 is not THAT young. We are certainly eager to offer advice to a child and fifteen is a child. Just what a kid needs is their brains bein swizzle sticked with psychedelics. I agree with the O2. Potter Quote Link to comment Share on other sites More sharing options...
Poli Posted September 15, 2012 Share Posted September 15, 2012 Hola Javier, are you still there?. Please check your PM (Mensajes Privados). Saludos Poli Quote Link to comment Share on other sites More sharing options...
Javier Posted September 18, 2012 Author Share Posted September 18, 2012 Hello, thanks a lot for your supporting!!! I´m already back from Almeria, and leave Alex family hopeful cause the relief of these last days. He is painfree almost 6 days ago. His father helped him, these last attaks, to breathe as they were lerned by a psicologue during the first cycle. It should be clare for them to look for a good mask, and all the rest.(CHfather, Spiny, I don´t know well, the mother doesn´t remember but she thinks there was not a bag) The case is that O2 was not a good experience for them, the only idea of oxigen tank is gloomy. in fact, Alex only has sufered two cycle, the first, 2008-2010, lasted one year and a half, cause of cortysone; afterwards were other year and a half of relief, and in december 2011, till march 2012 second cycle. They had the hope all will dissapear with puberty, but these two week of attaks have alarmed them. Now attaks have gone. I talk with the mother before live them, and as we have been sugested, she is looking for D3 regime and RC seeds. Father doesn´t know nothing yet, his bond with the child is so deep that maybe in this moment he cannot assume the attaks can go back. Maybe this kind of faith has helped him to abort the lasts ones. Whooligun, I don´t konw if the child has an MRI, but i will question the mother. why it is so important? Could you send me a link about it? thanks Diamondmaker, Potter, thanks, I think your opinion is also important, and would like the child never have to try mshr. or Rc. thanks Thank you all for supporting us Javier Quote Link to comment Share on other sites More sharing options...
spiny Posted September 18, 2012 Share Posted September 18, 2012 Javier, The MRI and MRA will tell the doctors if there is a structural problem causing his pain. They check arteries, which can be very important. These are standard tests for CH, with a good doctor. They rule out other nasty stuff. Perhaps let them know that an O2 tank sitting in the corner is insurance against the pain, not a sign of sickness. I don't like looking at mine either, but I sure am glad that it is there! All the best spiny Quote Link to comment Share on other sites More sharing options...
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