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Tony Only

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Everything posted by Tony Only

  1. 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!
  2. Me too, at any browser. Every time you should navigate you get the warning page.
  3. 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).
  4. 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 !
  5. 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.
  6. 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.
  7. 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.
  8. 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).
  9. 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 !
  10. 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
  11. 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.
  12. 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.
  13. 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 ?
  14. 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.
  15. Many of us have issues with our eyes and eye-sight, it can be and probably is cluster related but not related to blocking. If something is blocking the MM now and did not couple of years back, what's different ? Any prescriptions, vitamins, something in the diet ? Since Vitamin D is not obviously working at the moment, I would not hesitate to pause it and if you don't know your blood level, I would pause it today.
  16. Have you been using a lot of MM recreationally as well, not just to treat CH ? The most usual types of difficult clusters (that I know of) are the ones that start straight out chronic and do not respond well to any treatment (not your case) and ones that have transformed from episodic to chronic with too much (prescription) medication overuse (not your case). If one views alternative treatments as others, they can be overused as well (in my opinion) and lead to less response - not just psychedelics but others as well. My suggestion would be to tell your doctor the truth if that does not lead to any severe trouble with you, but caution is wise since I can relate to where lack of understanding can lead. And have that MRI. I am not a supporter of verpamil as treatment for clusters but it helps some so it can't be ruled out. Oxygen on the other hand I would recommend for everyone and if it does not help it's usually done wrong. Inadequate flows being the most usual thing and/or wrong kind of masks. High-flow oxygen with proper masks should be one of first priorities. Vitamin D is not safe either when used as big amounts for long periods of time. Have you had your blood levels tested concerning Vitamin D ? If not, please do that ASAP. Liquid Vitamin D's plus "sprays" are usually in very high concentrations. What's your product in IU's ? I know few who had a rough time with clusters when their blood levels were approaching toxic levels.
  17. Chance to get oxygen ? If not, chance to try it to treat an attack at this resistant cycle ? EDIT: I re-read your posts. What has been the response from Vitamin D ? I would not rule out LSA (seeds) if you have only tried them once. Potency varies from batch to batch like we've seen so many times in communities. I think I saw a pretty good LSA extraction file in Facebook somewhere.
  18. I think the amounts of MM mentioned in the beginning of this thread are quite large (3-4 grams). And you mentioned sometimes not having any effects. Is your MM coming from the same source all the time ? I would guess the busting material is faulty. Or if it is not, used by someone else for an example, my second guess would be something blocking. It does not have to be a prescriptive medication, it can be something else. Your CH certainly sounds very resistant so an MRI should be taken (sorry if this was already suggested) and maybe consult a neurologist if that is possible. He/she most likely will not agree with instructions given here. For some changing tryptamines does the trick when one stops working (momentarily) that has been effective in the past. I think LSA (RC seeds, HBWR seeds) is at least as good as psilocybin in MM. I would try that. Then there's LSD like you mentioned but if it's scary put a weight on that feeling as well. Then there is 5-MeO-DALT which did the trick for many of us but it's hard to find outside US. Have you thought about other options than busting, besides pharmaceuticals ? Adjusting you diet ? Anti-inflammatory regimen (Vitamin D + others) ? Herbal Protocol (Liquorice Root + Skull Cap) ? How has your CH reacted to taurine (energy drinks) or have you tried any ?
  19. Just stumbled into this thread, anyone at any point setting anything up in Europe, you can contact me. I think some finnish patients would definitively participate and I can pass on the word about it. We have had meet and greets for patients only so far in Finland. Things will hopefully change big time in future years to more conference like gatherings including doctors and medical field as well.
  20. Hey, where are the PICTURES ? They are everything to me, to be able to see all you fine folks and conferences in pictures afterwards since I am only able to be there in spirit
  21. To add to the above: On this particular cycle I had little to no success on breaking the cycle with tryptamines so I had not used them in a while when going at it with energy drinks, I don't know does this play some kind of part with my great response. I also had no chance to obtain (switching) tryptamines I believed might have worked better than what I had (psilocybin & LSA). I got the idea since I have a habit of listening to shadows, do I need to abort with O2 or not, and sipping energy drinks. I started to notice they might prevent hits completely on very small amounts. When I decided to try it out, I also made very sure not to use any vitamin B supplements (had been using strong vitamin B's every now and then) since I think these vitamins play a role in why energy drinks help (not just the taurine). I was also remembering some posts where people felt energy drinks don't work as well if you're using a lot of vitamin B. So all my vitamin B intake came from these drinks. Preventing with energy drinks worked so well for me that I was able pretty soon to only use half a drink, later even less. But I'm a lazy guy. So when I had a whole day ahead of me full of things to do and even if I hadn't been shadowing or expecting a hit I noticed myself drinking these as kind of extra shelter to last the whole day. The more I used them (on hectic weeks) the more I was worried they might lose their potential like everything in CH. But they didn't, they didn't fail me once. When the cycle was over I quit drinking them. Since then there has been a short activation lasting a week or so (during "sun storm" in Finland) and again they came to my rescue. I'm pessimistic as far as treatments and my personal case goes so I think they might not work this well every year. Then I plan on doing the switching, between liquorice root tincture and energy drinks.
  22. I've never heard of successfully preventing a hit with O2, many have tried. I think the mechanisms of action are very different on O2 and energy drinks. Vasoconstriction probably being connective mechanism on both though.
  23. For those who stumble into this thread later on, just opening their eyes and getting that first cup of coffee http://youtu.be/-bYAQ-ZZtEU
  24. I'm not participating much on english CH discussions at various sites any more and nowadays sometimes I run into trouble when I do (not here since ya all are so sensible!). I have followed our finnish CH group almost daily for around 4 years and there are some consistent observations made in this group that repeat on different patients year after year. Usually I don't take these observations outside the group (to english CH sites) especially when they are something "new" since my fan does not need any more s**t it's got plenty. This came up yesterday on Facebook so I thought I'd post it here as well. It was about steroids' ability to "create" conditions for CH to come over. Some people can kickstart a cycle completely unexpected with having a steroid course for some other ailment than clusters. It's not even usual but there are too many cases for me to think it's a risk for some. I have no idea would some kind of steroid response, or lack of it, play some role in this. But it's fairly logical IMO, we're dealing with a stress hormone here. That has a chance to rock the boat on some of us. One other thing I just have to mention here is preventative busting. The official recommendation is to prevent based on everyone's individual schedule. But it looks like that for some us doing a preventative busting just for schedule sake in a situation where there has not been even a slightest sign of a weak shadow for a long time might rock the boat as well. And at worse case, kickstart a cycle. Would be very interesting to hear observations of others about these, and other things as well.
  25. CH lump. Physio might be good for those on who neck shoulder area plays a role in their cycles. I think in lighter weight cases of CH preventing neck shoulder problems might even affect our condition in some positive way. But it's a consequence not a cause.
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