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Tony Only

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  1. Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare. Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names. Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming. One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !
  2. I tend to be preachy about verapamil, it's a drug that creates lot of heart problems. Anyone who is on it, needs a checkup (heartfilm) every time dose changes by 80mg or more. This is the official guideline but many doctors skip it. 240mg is a normal dose for someone with heart issues. Since we do not, 240mg is a bit high. But clusterheads have survived from 1000mg daily or more, myself included, with a heart failure though. I personally would recommend to try alternative safer things first, not simultaneously with verapamil, but that's just me. Did you read this article already ? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people - there's a chart (labeled Update Jan 2017) that should be more simple. Some people who start vitamin D as en emergency only take Vitamin D (for an examply 10,000IU per day) and Vitamin K-2. Then they will do complete regimen when they have blood work done. It's important to check the Vitamin D levels with a blood test. The Psilocybin and LSD page I linked really covers the mushroom and seeds part. It's good to read completely over time, since you must not "just" take these substances but also learn what you are doing. Psilocybin mushroom is the kind we need or seeds that contain LSA (often called Rivea Corymbosa or RC seeds or ololiuqui seeds). Mushrooms is more of a "trip", seeds is more of a nausea. Here in Finland it depends a lot of the doctor what they think about Vitamin D although it should not really be a matter of opinion. Some recommend it, some forbid it. Doctors are unable to recommend psilocybin and I think many do not know about the subject at all unless they are linked to patient communities. There may be judgemental views too. I think the decisions made in the beginning will have a huge impact on the forecast what cluster headache will be later in life. Too few find all the options available to be able to make the best decisions. I wish you all the best and pain free life for your wife as soon as possible.
  3. CHfather has compiled an absolutely astonishing O2 article, it's on this site. Batch can help you best with Vitamin D. Even neurologists get very little education on clusters on their basic schooling so usually we are bringing more awareness and information from patient communities to them on each and every visit if they are the kind that listens. Best outcome is to find a way to prevent cycles and attacks happening altogether. Only known way that could happen by itself is old age and that group is tiny; who have their cycles disappear probably due to changes in hormonal activity. I would not count on that and I dislike doctors telling that to CH patients. We have no medication for clusters and that might not happen for a pretty long time. There is no prescription medication one could use year after year cycle after cycle that will keep on working or the side effects would remain tolerable. As personal opinion, many go from episodic to chronic (worse) due to too much medication and because at some point you have to abandon 1st and 2nd line of medications and turn to (usually less effective) 3rd and 4th line of medications. I am unable to recommend that route to anyone. Luckily nowadays we have self treatments coming from patient communities such as this one. Depending on the severity, on "lighter" cluster Anti-inflammatory regimen (Vit D) alone might lead to pain free life. Episodics who have transformed the condition into more severe may need something else too and especially chronics. The most effective treatment is busting, using tryptamines (hallucinogens) to prevent cycle from starting. People take them 1-4 times a year approx, they are not used all the time. Here is more about that https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/ For the outcome part, anyone who ever asks me that, I would advice to read this blog, completely - but it is in finnish and I don't know what kind of a job translators would do to it. It is a magnificient piece of work by a friend and clusterhead, Niklas Koponen: http://sarjoittainenpaansarky.blogspot.com/
  4. UK people can help you much more, I'll just say about triptans (sumatriptan): tablet form is useless for most of us. There is an injection and nasal spray that are used and work fast enough, injection is faster. Triptans are problematic too since one should only use very little of them (not too regularly/over use - doctors orders vary a lot what is safe) because they are able to keep cycle going and even make things worse. Oxygen is equally effective, it really is, and can be even more so. Oxygen is safe, it won't make CH worse. It takes some effort to get an oxygen treatment setup right. You need high flows (15-25lpm litres per minutes) and prescriptions usually have way too low flows to help us. Plus a good mask, cluster headache mask, non-rebreather mask. Please read the oxygen file on the site. Anti-inflammatory regimen (Vitamin D) helps many (at least 80% of us) and is safe compared to prescription medication we get. Other can guide you further. Did I say oxygen ? O2 will be a life saver !
  5. Reminded me of image I posted some years ago to Clusterheadaches facebook group
  6. I am looking for any input or ideas for female patient who does not write in english so I am posting on her behalf. I don't know much about the brain injury involvements in particular. Cluster headaches have begun and gone pretty severe in just few years. Here are some background details. Anything anyone can think of, to help or to try, it might help. Anything I can ask from her. Brain injury in 2013 which left some symptoms; headaches, fatigue, memory problems and trouble with balance. Cluster headache diagnosed in july 2017. Medication prescribed for it: steroid course, verpamil, imitrex when needed and medical oxygen. Only triptans and oxygen have worked. Diagnosed further as chronic in 2018. These have been tried: Gabapentin - not effective Topamax - too severe side effects Baclofen - too severe side effects Lioresen - not effective Diazepam - only makes sleepy, not effective Tramal (opioid) - increases amount of attacks Tried during hospital stays: Valproates Indomethacin Dexketoprofen ...these have only helped a little They might help with oxygen but do not prevent attacks from happening. Verapamil dosage has been 360mgx3 times a day (total 1080mg/day) and now it is lowered to 120mgx3 (total 360mg/day). In addition to others there is melatonin daily at 9mg dosage. Oxygen and triptan when needed. Occipital nerve block done last week, maybe it has only helped by decreasing a few attacks. Her blood level for Vitamin D is 175 nmol/L. She is waiting for SPG stimulator but due to delivery problems it will take a while. Needless to say probably, she is exhausted.
  7. I can totally relate to this. I have PTSD and pretty severe trauma background and for me, every "trip" for cluster treatment I won't be expecting anything good - so the set & setting is way off. I can't do mushrooms on the normal doses pretty much at all. For me who prefers not "to go there" but still needs to treat clusters, LSA is a good option. Or a bad option, since it's no "fun" - mostly nausea but there are almost no psychedelic effects. There's always kind of a pressure present in my life because of the need to prevent with something I am super uncomfortable with but if I don't, facing cycle is way worse. That's a tough spot you are on. BOL would be a life saver for guys like us.
  8. Thanks for the encouragement, so I finally did. It gives a lot of hope that there are doctors like McGeeney available for our community. I was thinking how great would it be for some ideas to get exchanged between US and finnish doctors. To me it has always seemed that doctors in here, especially in neurology, don't have any kind of source for information what is happening and has been happening in patient communities. For a long time. Cooperation would probably have a huge impact.
  9. I have been administering the finnish group now for 6 years, I would say steroids are the most potent to affect negatively on cluster headache cycle length and via that to status; most episodics that go chronics do way more steroids than anyone should (if you consult GPs) - if you are in that group that medication will transform your condition in the long run. On steroids it would mean annual use or several courses inside the same calendar year. Many self-medicate using it non stop. When the regular steroid response is gone, adrenal cortex might not be working anymore (which should be kept eye on anyway if on steroids) and the last option is IV steroids. In a large group it's fairly easy to do comparisons or questionnaires on cycle lengths among people who have never touched a cycle with steroids and those that do regularly and only one of those groups has extending cycles. Same deal with triptans (Imitrex) - they are not this dangerous to everybody but for some. But they usually bring additional attacks and intensify the ones happening. But since triptan molecule is around your receptor for days, it is doable to keep the cycle neverending with them as well. Verapamil probably affects least to the condition itself in a bad way. Yeah, I remember when it was thought to be one of the worst. Still many people account it for making them chronic. Patients descriptions about this phenomenon should be recorded somewhere. To me at least, it happening for some is equally destructive on quality of life than cluster headache itself. It doubles the misery. 'There's probably zero scientific data on this.
  10. This left me puzzled, what happened that made you go back to pharmaceuticals ? Tryptamines (MM) will abort this kind of situation but there's a detox from everything that is blocking, anything that might be even interfering and even then it can be hard with pharma background. Those who have had the certain drugs on a long term use may need additional tryptamine or cycling of tryptamines LSA-psilocybin-LSD but if this is done right, on a prescription medication body I can not imagine going back from that. I am just wondering why. If you do these with blockers in your system, you will still get the psychedelic effects but no response to cluster headaches. If you are able to detox to medication free, you can do subhallucinogenic doses if the effects are unpleasant. Again, in our finnish group there has never been such amount of busting not done right than in the last few years. Probably because many will not discuss what they are about to do (laws) to have others help if treatment response is not what it should be - which is absolutely terminating clusters. Tryptamines are not just an addition one can throw in, you absolutely must know what you are doing and how to have those receptors free for healing molecules. I am sorry I don't have the skill to write in encouraging way, I see a bad situation and jump right in being very solution orientated.
  11. To me, this sounds like a cluster that has been boosted into a whole new level with the help of prescription medication - steroids and triptans (Imitrex) being absolutely two of the worst. They are like fuel for the fire in the long run. For some it happens in few years and for some it takes a decade or more - regular use of either one, both together being the faster route. I have almost exactly similar personal experience and nowadays these kind of patients arrive to our finnish group almost weekly. For some of us, steroid&triptan combination is able to make oxygen work less efficiently at first and if the use is continued lead to oxygen not working at all. Triptans not touching a hit at all is very rare but it is doable with steroids but at this point you usually are receiving them intravenously or you have done too many high dose courses for one lifetime. At my IV time nothing touched my hits anymore. Depakote and verapamil obviously are not helping here, first being able to screw up your brain more and verapamil obviously useless since it's a preventative. Because this does not happen to all of us, not even all who regularly overmedicate with the two, it's not always though of and even questioned at. It's certainly a possibility to be considered when there's a pattern. What I personally don't get is how doctors systematically miss this; in my country the most usual way to neglect this is to say some cluster headaches transform this way - which is not the case. It should jump right out of those patient files reading 5 years back for an example. I hope this is not the case and it's just a really evil cycle. But if you see a pattern going steadily worse cycle after cycle this is probably it. Not many things one can do but to detox to a point that oxygen begins to work again. After detox anything you will do (Anti-inflammatory regimen) will be more effective than they would be when on prescriptions (when they are the cause for things going worse). I can't but wish you all the best and I hope you feel you are somehow able to detox and find better routes, busting, Vitamin D, Herbal protocol.
  12. Today we had a young girl arrive our finnish Facebook group, she has had some form of head pain most of her life but has associated it to hereditary condition she also has. Now she is beginning to think the head pain might be something else. I believe it will be very, very difficult to a) find a doctor that is able to spend the time required with her and sort out different things going on pain-wise and b) if such doctor is found to have possibility to go through the required tests. I'm thinking asking around in patient communities, in here for an example because cluster communities are so knowledgeful. We already found someone who has CH and EDS which is amazing. I did a Google translate on her message and will attach it below. The english is pretty bad but I hope you can understand the important parts. Any ideas are most welcome and if someone has thoughts where to ask diagnostic ideas online that would be great. I was thinking of asking about it from Brian McGeeney via Facebook but can't decide is it too intrusive. ---translated message begins--- Basics: My father has the joint hypermobility form of Ehlers-danlons syndrome, which is connective tissue disease. The disease is strongly hereditary and I have all the symptoms that meet the criteria of the disease. However, I have not been diagnosed because the illness is poorly known in Finland. That is why I also have no contact for doctor or treatment. However, my worst symptom is a chronic headache, which I have always thought to be linked to Ehlers-danlons, because it is a common symptom. (so I have a lot of other symptoms, but now I just focus on that headache) But I was thinking of trying a different approach if this is something else. My headache began irregular as a child and has increased with age. I am now 18 years old, my worst symptoms began when I was 9 but I have had symptoms before that as well. Now for 2 years I have had a 24/7 headache and no day has been without pain. The pain is, however, undulating (stronger / milder) and varies daily, but on a scale of 1 to 10, the pain is an average of 6. The sore focuses most on the forehead. But it also often feels strongly at the top of the backbone, which I also occasionally get electric-like pain or pain attacks. These electric-haired pains will also come to the forefront, ie they do not focus on one spot. And it seems like a feeling of pain is ready to make me unconscious / knock me out. I have no auras or light / smell / sound sensitivity. Clearly I attach a strong dizziness to my headache (dizziness is more rocking kind) and nausea, as well as fainting. In addition, it seems that the senses would get mixed / weakened, and my balance will deteriorate considerably. Also in heavy pain, there is a blurring of speech and the general difficulty of communicating. On my daily head pain there is also a severe ache on the face (cheekbone and jawbone). There is also a discomfort and pain behind the eyes and that pain feels like "sharp". My eyes may also drain or be very dry. Me feeling sensation is poorer on the right side of my face just as my body is weaker to sense on the right side. My limbs often get numb or feel numb and it is difficult to say whether it is a headache or whether it is caused by EDS. My vision is also weakened by the roughness (I have astigmatism, poor vision), which feels like a gauze in front of the eyes. Pain is usually worse when I am lying down and especially if I am sitting. There has been much research, but no explanatory reason for this has been found. All the possible blood tests, the liquid sample, the head and neck muscles MRI have been taken (it should be added that sometimes I asked about the possibility of chiara and then it was said that it was not.) But I just found out yesterday that the borderline diagnosis in Finland is 5mm, .), epilepsy is ruled out neurological examinations have not anything unusual and I have visited ear clinic examinations are not ache due for balance or structural defect. I have tried migraine blockers, meds for migraine attacks, antidepressants, painkillers to resist pain better, regular painkillers, painshots, intravenous analgesics and caffeine pills. None of these have been helpful and most of them actually only exacerbated the pain. At home I have tried everything possible, of course, what I have just been brought to my attention, which would facilitate the pain. I've tried to weed out all the stress and stimuli of life away. A year ago, I had to put an end to a day of high school and at the moment I'm in high school online, which does not in any way due to the pain go particularly well. I do not have any more hobbies, but in EDS it is a part of me. I would not be able to live alone at home, and I would not even dare to live alone because I need help from my boyfriend weekly. Often the appearance or meeting of friends requires a lot and the pain is usually worse after the stress the next day. This is no longer humane and I'm going to have the means to go down. Therefore, all information and assistance is now required. Would you recommend a physician specializing in headache? I would also like to especially hear the experience if some have tried botulinitoxin to treat headaches ... Thank you so much for having read my long text and wish you all good November!
  13. Me too, at any browser. Every time you should navigate you get the warning page.
  14. I have to comment on this part having gone through well over 20 meds myself. Lots of the "old timers" who have been around for decades and have gone through a bit more rough treatments for CH are ready for anything and are ready to pay any price named. But I don't think that's fair for the young folks. For verapamil the impact may be small - for many anything is small that includes surviving and staying alive - but what if even the little one is avoidable. We have a finnish patient group sized 1300 people at the moment and many people who are not even at their twenties yet arrive and join our group and have had to give up a sports hobby for an example due to verapamil. They learn of anti-inflammatory regimen and if they're lucky will avoid further heart issues, discontinue verapamil and seek safer options. That's also the reason why I am still writing in the internet; I hope that one day all patients would have all the options laid out for them and they could pick the most effective and least potential to cause any size of negative impact later on in life out of all these options. First. It's a long way until we're there though. In large sized groups that have gone on long enough, certain side effects are associated to the same drugs over, over, over and over again. What makes it difficult is that they won't happen to everyone but there are certainly things that should be avoided (if there is another option to something).
  15. Every time your dose is altered by 80mg to one way or the other you must get a heart film. I would not recommend verapamil to anyone in a world where we have anti-inflammatory regimen (vitamin D), herbal protocol (liquorice root) and busting (MM, lsd, lsa). It's not used for it's regular uses (heart/blood pressure) not that much anymore because there are better/safer options . IMO 480mg per day is just about maximum for any kind of safe use for majority and even on those doses there usually eventually arises either a heart problem or problem with the response. I've been well over a thousand myself. Verapamil will have an impact for the rest of your life, no matter the dose. I agree with CHfather, do the D3 regimen instead. Good luck !
  16. For some reason this reminded me of Trauma Releasing Exercises (TRE). There is probably a connection with myofascial trigger points and fight and flight reflex. I think it would be nice if someone would look more through research into this kind of approach as well. It could be included in discussion about how hypothalamus dysfunction is born.
  17. I copied/pasted the text in the Facebook post, inserted that and the link to Facebook post here in the "Submit Reply" box. This forum automatically changed the link to somekind of Facebook preview and when I tried to reply I got this.
  18. It was announced on Clusterbusters facebook page that BOL-148 is back on track. I would have posted the update here or even the link but this forum does not let me do it. So go to Facebook, search "Clusterbusters" and scroll down to Denver posts, it's there.
  19. There's a wide variety of exercise people use to even "turn back" an approaching hits or treat that shadowy feeling. Does not work for everybody, for some it makes things worse. Would it be possible for you to look into O2 again ? How you use it makes a big difference how well it works. You could get a tank to your work maybe ? O2 is at least as efficient as triptans BUT does not contain the risks that triptans do creating additional more severe attacks and lengthening the pain cycle. I personally would never take a triptan for an attack, only O2. If you go to work after a hit and are still in pain, that might be the "shadow pain" in between the attacks. Taurine (energy drinks) might be good option for that as well as Liquorice Root tincture (there's Herbal Protocol here in the board somewhere, this can't be used with triptans or several other prescriptives but can be used with busting).
  20. I wish you a celebration of the day of your birth ! Users of this board can probably relate to this little quote. "The struggle ends when gratitude begins." -Neale Donald Walsch Feeling very grateful for the help I and so many have received. Have a good one !
  21. For anyone looking into the subject of trying to have an impact to cluster headaches via personal diet, I can give my highest recommendations for the book Brain Chemistry Diet by Michael Lesser. As a personal opinion as many diets might help us as a patient group, after all we are individuals and each cluster headache is a little bit different. A custom made diet for cluster headaches would be rather interesting, one of targets probably being an effort to be able to affect our ("faulty"?) brain chemistry. Someone in the orthomolecular field came first to my mind. Many have found personal diets already that help them with cluster headaches. Here's the book on Amazon (I think some have a way to get a preview of the book there?) https://www.amazon.com/Brain-Chemistry-Diet-Michael-Lesser/dp/0399147446
  22. I think it was late 2006 when I heard for the first time about an american patient group that were pursuing after effective treatments for cluster headache. I really dug their name. They were called Clusterbusters. Here in Finland there was a lot of badmouthing about them, bunch of patients who only want to "get high" even from such people who really should have known better or should have had more wisdom to look at the whole condition and treatments objectively. I didn't care much about that. It is amazing to where Clusterbusters has come since then and what Bob Wold and everyone at Clusterbusters has achieved for us, do we know or understand it today in 2017 or not. Thank you Sir and everyone involved.
  23. Hell, I'm not even sure what my display name has been in 2010 when joined. I browsed through My Account but could only find "current e-mail address", could not find what it was back in 2010 or what the ID was.
  24. So, are the administrators able to directly fix any issues after the update ? I don't have a clue with what e-mail I have signed up with (if I can't check it now from anywhere on my account?), it's possible it's an e-mail account I don't have access anymore to. Should it be the case are you able to fix things for those who contact via e-mail for an example after the update ?
  25. Don't forget to have another blood test, then you can also calculate how the amounts you have been using have affected on your levels, on your personal case. If you can get oxygen that will eliminate most of the panic in life because though you still get hit, you can abort every hit quickly. Easier to weight your options with calmer mind. In Lithuania this company should deliver sufficient O2 equipment, at least they do in Finland http://www.linde-healthcare.lt/en/products_services_ren/products_services_care_area/homecare/cluster_headache/index.html Any questions about oxygen, just ask. Wishing you all the best Please keep us updated.
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