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  1. I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering.
    9 points
  2. .....was exactly same.....in cycle only as an abort/O2 enhancer....between typical hit times was a trigger. but out of cycle no problems.. ....vasoactive substance that seems to turbo boost caffeine. some find supplements alone helpful... ...none of us do...its the dangdest thing but way common for clusterheads... ....me too...fast, portable, tsa compliant, more caffeine/taurine than many energy drinks w/o the ridiculous gross amount of sugar...
    6 points
  3. I am at the end of a 3 week cycle, so the attacks are shorter and more shadow like, but I had one that was lasting around 8 hours with no relief and read on here to try ginger. I made ginger tea and the pain finally started to let up! I have now had a cup of ginger tea right when I start to feel the pain come on, or tightness in my neck, which is an indicator for me, and for the past few days and attacks it has stopped the pain and the attack by the time I finish the cup of tea. Who knows how long it will last, or if it will continue to work for the lesser/shadow pains but every small bit of help to reduce or stop pain is worth it. I have been using the pure ginger tea from yogi tea. Hope this helps someone, even if just a little!
    4 points
  4. The thing about the oxygen machine (concentrator) is that they are not pure oxygen the way O2 from a tank is. Some room air gets mixed in, so you might not get the same results. As FunTimes says, probably no harm in trying. I would suggest that if you are aborting in 7-10 minutes with the method you're using, you might be able to get a quicker abort with the more "standard" method using a higher flow rate of a deep inhale, holding it in your lungs for a couple of seconds, and then forcefully exhaling (rather than just holding the air as you wait for the bag to fill). But you've been at this for a while and maybe your method really is best for you.
    4 points
  5. I was dealing with my brother-in law and cancer. I was doing a lot of driving to and from appointments and hospitals for him. During this time I did not have an increase in clusters, They were about the same as always. After his passing the shit hit the fan and I got crushed every day. I can only say that stress and clusters can and will react to each of us differently. I typically have less when stressed out and more during relaxed times. That also go along with getting hits as I fall asleep, lay down and fall asleep and my body relaxes about an hour into that sleep and I wake up with a hit. As far at the oxygen concentrator goes I would see if you could maybe rent one for a week and test it out. If it works that is awesome and go get one. Again everything works a little different for everyone so if it works for you stick with it!
    4 points
  6. Welcome to the community @Lymestoney! To my knowledge it's only available thru the clusterheadache dot com store I'm afraid! If you happen to have plans to attend our 2nd annual clusterbusters European patient conference in Glasgow in May you might be able to purchase one there!! I know that we did send a few to last years inaugural event. After having used one for 15 years I can tell you if I were to lose mine I would gladly pay $75 to replace it! They are just that good!! Dallas Denny
    4 points
  7. After his courageous 2 year battle, Clusterbusters is overjoyed to share that Bob Wold has beat cancer.
    4 points
  8. ...cool vibes for a cool cat...
    4 points
  9. I used my thigh, so far so good. Day 4 attack free.
    3 points
  10. Please join Clusterbusters at our 2nd U.K./European Conference! The cluster community will gather in person in Glasgow, Scotland for a weekend with speakers including neurologists, patients, and caregivers. The agenda will include safe rooms, treatment workshops, demonstrations, and the chance to share and learn from others' experiences living with cluster headache. We hope to see you there! Register today! https://cbglasgow2024.planningpod.com/
    3 points
  11. Hi all - I’m debating an upcoming trip to Lisbon, Portugal with family because I’m in cycle. You can’t fly with oxygen tanks so I can’t bring one with me. Anyone have any insight into how I can get one to have at my hotel room? I already emailed the hotel, waiting to hear back. I’ll bring my regulator and cluster mask. My cycle has been very very manageable (thank you RC seeds!!) and I pretty much just need Advil and ginger capsules to treat any CH activity I feel, however, I do have to hit to oxygen from time to time. And flying and time zone changes can really mess with CH! Appreciate any tips and advice!
    3 points
  12. This is a new addition to the headache center at Jefferson in Philly. We are excited to announce the launch of our new clinic dedicated to Cluster/ Trigeminal Autonomic Cephalgia (TAC). This clinic is specifically designed for patients like you who suffer from cluster headaches and other TACs, such as SUNCT and Paroxysmal Hemicrania. Our mission is to improve the lives of patients with Cluster/TAC headaches through research, advocacy, and effective treatments. We will provide comprehensive care to address both your physical and mental well-being. Since these conditions are not well understood, we're committed to raising awareness about Cluster/TAC headaches and educating the public. The cluster/TAC clinic is dedicated to providing exceptional clinical care with compassion. We're thrilled to have you join us on this journey. Please reply to this message or call us at 215-955-2243 if you're in cycle. Please reference the Cluster/TAC clinic in your call or message. Thank you, Your Care Team at the Jefferson Headache Center
    3 points
  13. YES IT WOULD!!!! I personally remain adamant about never, ever, referring to a cluster attack as a "headache". The naming of this deep brain disorder is soooo long overdue for a change, and the h word must be strictly prohibited from inclusion in the new name!
    3 points
  14. The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.
    3 points
  15. ...might not make any difference....when i self paid it was $14/e-tank....when insurance covered it was a $14 co-pay. they got us coming and going...
    3 points
  16. Good thinking, since in your case of course it sounds of critical importance that the calcium level be checked. Sometimes a different form of magnesium can be more compatible for a given individual (I know this because I respond better to magnesium citrate than glycinate, but my wife gets leg cramps from citrate).
    3 points
  17. Thanks for all the input. Great info in that basic non-busting post. I might try the licorice root since it's listed as a natural vasoconstriction. I will give the full vitamin protocol some time. Definitely considering the shrooms. Right now, I'm not living in my home city of Vancouver, Canada, but Canada plans to legalize it, and a few new labs there developing natural medical grade psilicybin and MDMA. (They got some press recently after getting FDA approval, and shipping their first batches to Australia.) Vancouver has already decriminalized them, like they did with marijuana in the early 2000s, before it was legalized nationally. My Chs didn't get worse after the tooth extraction, which was done six months after the C CH started. It had a teeny root and when I saw it (combined with the xray of showing such a shallow root, no abscess, etc) I thought, "No way this is the root cause." And before the extraction, based on the xray, the oral surgeon said that my described pain couldn't be due to the tooth. She said maybe TMJ or sinusitus, which I knew I didn't have. Though I have definitely developed jaw stiffness, facial pain, tenderness with C CH and I do find that some TMJ exercises provide a bit of help opening up the nasal passage and relaxing my facial muscles. Every day is a DIY clinical trial.
    3 points
  18. ...hey, if it works it works! more typical for nsaids to help with shadows. you may have nailed it with the allergies connection. anything that causes inflammation, histamine release, vitamin D3 depletion, hormone releases can be triggers for us. my first few yrs antihistamines were helpful....many find help with Benadryl prior to sleep or even daily during certain cycle parts (will make you sleepy). note that while the nasal congestion could be an allergy symptom.....it is also absolutely typical of cluster autonomic symptoms. i used Tiger Balm inhaling to clear sinuses....didn't affect the hit but cleared the awful congestion that makes a hit even more miserable...
    3 points
  19. When I am in a cycle, caffeine at unusual times will trigger a shadow for me. Like if I drink a soda at 10am rather than at lunch, I will definitely feel it. Same with an evening caffeinated beverage. I usually avoid caffeine out of cycle too since it keeps me awake at night. On the other hand... I am definitely team caffeine to abort! 5 Hour Energy is my go to since it's easy to drink. There is the added benefit of taurine but I'm not sure what role that plays in aborting the hit, I just remembered reading that it's helpful lol. Even at 4am or 8pm, I am able to fall asleep no problem after drinking a 5 Hour Energy and aborting the hit. Sometimes I've even had a 5 hour energy at 8pm and another at 4am and still slept fine once the pain ended. I don't understand it! Best of luck!
    3 points
  20. It does seem odd, but with CH, there's always a surprise. Since you're new to this, you might get some benefit from reading this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    3 points
  21. Here's an overview that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    2 points
  22. Thanks alot friend. Means alot to me. Seriously does. Wishing you a lovely day.
    2 points
  23. Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this!
    2 points
  24. I go off into the higher realms of consciousness during cycles. It's pretty easy to do when you are exhausted from no sleep and been tripping on stuff for weeks. During the worst attack in my life I heard dancing queen playing in my head note for note like it was really playing. That one was weird!
    2 points
  25. Hi there Chris. Thank you so much for taking the time to inspire me in ways to handle my situation. I truly appreciate it very much. I assume this is a safe place to spill my guts without being judged? Here we go: Just like you, my battle started when I was 16. But let's rewind a tad. Between the ages of 10 till I was 14, I had been sexually and violently abused by 3 people. Continously during this patch off my life, holidays, birthdays or any special occasions were taken away from me cos this when it was at its worse. These people are not my immediate family. Anyways, I hid this from everyone up till today as I'm sitting at 45 years old. When I was 19 I couldn't study cos we couldn't afford it. My dad was ill and my mom worked 2 jobs. So I went straight into the job life so to speak, making whatever money I could so we could put food on the table. Age 22 I managed to save up enough to study and achieve a diploma. Things started looking good for change. 2001. New years eve, I was on my way to work. Didn't have ea car as yet so I took a taxi. The taxi back wheel got loose at 140kmph and the entire vehicle rolled over about 3 or 4 times before landing on its roof. I managed to kick out the back glass and climbed out. Helped who ever I could. Cellphones where flung out of the taxi however I managed to find mine to call for help. But just felt so dizzy that I fell onto the road. I could hear something screaching only to find a truck tyre inches from my head. The drive jumped out and rush to me. My shirt was soaked with blood etc. So he just ripped it open to check for injuries. I still can believe that I never had a scratch. It was somebody else's blood. 2011. My 1st hip replacement. 2013. My second hip replacement while my wife was in the same hospital sorting out our second miscarriage. And I know what going through a miscarriage is being a male in a marriage. I have seen also what it does to the female. It's torturous. There aren't words actually and I tried to support from I was. We currently do not have kids and we don't want any. We just have a dog which we latch on to. And I can see that I (as much as I love my dog) am second to him. Which kinda sucks in a way. Moving on, I had been medically boarded from work due to the headaches and hip replacements even though I loved my job. They put it down to me in a very sly way using the fact that they refused to let me carry my O2 to work. I fought them since they 1st brought it up in 2014. But they got me out on 31.03.2021. So yeah my salary took a plunge and I'm left at home staring at the walls. I turned my hobby into a small business which is electronic repairs, however I stopped for a while now since my brother passed last year. Still dealing with my loss. I always wished it was me and still do. To be honest, I'm not sure if others feel this way, but I am not afraid of dying. Actually alot of people are not afraid either. I guess they fear of how they will die. I so welcome it. In fact I had 2 failed attempts at suicide. Yes I'm seeing a psychologist and psychiatrist which I also put on hold since last year. ... And now the CH season starts. I am sorry for the long read and if I said or mentioned anything that is not allowed on here. I am glad I did find this group because I did learn alot, especially the D3 Regamin and O2 treatment. Even though the damaged to my self has already been done. I may require bilateral knee replacements soon as well as the 15 year intervention regarding my hips. I am sure others have been through worse in their own way and path of life and this is not to undermind what you all are going through as well. Just know that I appreciate you all for the advice and direction in managing this condition atleast, even though I have no control over my past. I guess all that's left to say is Thank you all from the bottom of my heart and pain free wishes always.
    2 points
  26. Generally, oxygen can be obtained in most major travel destinations. Check with your O2 provider because sometimes they can make arrangements. I guess the most common rental is a pretty unhelpful low-flow concentrator. This site -- https://travelwithoxygen.com/travel-oxygen-portugal/ -- seems potentially helpful; and this one https://www.oxygenworldwide.com/en/where/countries/
    2 points
  27. Also ... 20 Facts brochure 8-24-13.pdf Living with CH - 8.5x11 - 9-15-14[2].pdf
    2 points
  28. @Snowflake There is an excellent book that was written and published several years ago by a good friend who is also a clusterhead!! Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man https://a.co/d/3kZwmXJ Dallas Denny
    2 points
  29. Ok so one night I was in pain and didn’t know what to do with myself, so I threw myself in the shower and stood under the water hot or cold and let the water beat at the top of my spine and within 5 to 10 minutes the pain had completely disappeared, so I tried again next time and it worked and so on and so on and almost every time I feel a pain coming if I’m at home I’ll jump in the shower quickly and let the water beat at the top of my spine. it’s not a fix to get rid of them completely but it helps with the pain at that time, I get them everyday and night every few hours for an hour ish each time and has been going on for over 2 years so the relief from pain when I’m home is so good and I feel perfect afterwards. Please try this on your next attack and let me know if it works for you, I really hope it does, patiently waiting for someone to say it helps them too. xxx
    2 points
  30. Nice!!!! This 2023 editorial in the journal of the International Headache Society seems relevant (and is an interesting short read): https://journals.sagepub.com/doi/full/10.1177/03331024231212451?utm_source=facebook&utm_medium=social&utm_campaign=ihead2024&utm_content=ap_23pupgtmxz&fbclid=IwAR2YiwAM_00DoSP7j_0PP_hP5zkFXsf5GMpQqLp_3842NNAa0Um0h0L45Dk#body-ref-bibr16-03331024231212451 Would it help with awareness if these "headaches" were actually described as what they are, deep brain disorders?
    2 points
  31. I'm in the Raleigh/Durham area in NC! Hi neighbor(s)!
    2 points
  32. So sorry you are going through all of this snowflake! Sending love your way!
    2 points
  33. There's info here that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ For your future reference -- the tooth extraction probably made things worse, because the anesthetic typically used for dental work (and other things), epinephrine, is a major CH trigger. You can see more about triggers in the file of that name in the ClusterBuster Files section (I think there's also a link to the Triggers file in the link I just gave you above). Also for future reference, the search bar at the top of the page is a useful tool for information about some things. Seacrching capsaicin, for example, yields interesting results. (Search "oxygen" or "D3" would just be overwhelming.) Ain't that the truth! The D3 regimen, properly followed, just might do that for you. And there's also busting, of course.
    2 points
  34. I did the capsaicin cream inside the nostril way the hell back in the early 1990's, before imitrex was even available in the US. It did abort one attack (which would have been an easier one to abort for me as it was during the initial ramping up phase of an episodic cycle). After that it was only effective at providing me with one spicy hot nostril! I believe it hasn't really caught on because it isn't particularly effective. Many years later I tried the capsaicin spray in the nostril, but didn't get effective results from it either.
    2 points
  35. Hi Dany, I have read on here of others that have used capsaicin (nasal spray) with an occasional positive report. I've never used it myself, but was able to find something similar on iherb.com. You really should procure o2 as soon as possible as it is reported to be one of the best/cleanest ways to abort and attack. Many are able to abort is as little as 7 to 10 minutes. You will want to make sure that your setup includes a proper non-rebreather mask and regulator that allows for a minimum of 15LPM's. Glad to see that you started on the D3 reg. It sounds like you have been reading on here for a while so hopefully you are including all cofactors with the D3.
    2 points
  36. So sorry to hear of your loss. It seems to be common that folks do get hit directly after falling asleep when in a cycle. Not sure about getting hit due to being startled awake. 4LPM is very very low so if it's helping you to abort there is a possibility I suppose that an oxygenator may work for you. As for the D3 I am assuming you are taking one 50,000 IU per week? If that's the case you should be just fine. The stress of losing a loved one could be elevating your cortisol levels which might be playing into your recent attacks. I hope this passes for you sooner than later!
    2 points
  37. Glad to hear I am not alone in letting hot water pretty much burn my scalp and neck. I always end up in the shower, sitting under the water. At first I came to it as a way to simply cope and try to calm myself down from the pain, but it does seem to help break the attack, or at least get me through the most painful peak. I have never tried hot and cold water, I will try it. Usually I just use as hot of water as I can tolerate.
    2 points
  38. I guess so. I can’t make it to the conference but maybe someone could buy a few to sell on. Now using an ultra flow demand valve and it’s great
    2 points
  39. It was £200 but it’s worth it. My GP has actually now prescribed one for me for free, in addition, so I’ll have a spare which will be useful
    2 points
  40. ....be sure to read dosage instructions for the nasal...some create an endless loop need if over used....
    2 points
  41. Team caffeine as well, I am on team chronic and go through so many monster 'zeroes' sugar free so not guzzling calories, taurine can act as an anti-inflammatory so I think that is why it helps in conjunction with caffeine. Caffeine has never been a trigger, strong smells (chlorine, bleach, pinesol etc) Alcohol, the rest just after exertion, fluorescent lights can trigger but tend to just ramp it a bit. O2, opioids (does not kill it but rounds off the sharp edges, even a 9 to an 8.5 is a huge jump for these.) been getting high dose lidocaine injections (nerve blocks) all around my eye, bridge of nose, forehead, cheekbone, temple once a week for the last couple months and they also seem to lower the overall pain, but no abort from it. (4% lidocaine in large doses, looks like I have been stung by bees). Everyone here is helpful and so much advise and simply support here. Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join.
    2 points
  42. A sixer?. Whoa, you gave the beast both middle fingers and threw in some middle toes to boot. Here's hoping he didn't respond with any 6x beast finger pressing right behind the eyeball!
    2 points
  43. ...probably tyramine found in fermented products and/or the 0.5% alcohol that is allowed. one of the few 10 hits i've had was after na wine...hurt so bad i forgot to breathe....
    2 points
  44. Hi CapeReef, It's sort of the opposite for most. Many of us use caffeine prior to jumping on o2 to help abort an attack. I think it might be a coincidence but you never know.. it could odly be a trigger for you. I hope you stay pain free!
    2 points
  45. That is awesome news!
    2 points
  46. Glad to hear it!! I hope the demand valve wasn't too expensive.
    1 point
  47. Following up on this.... I am still using the oxy nasal spray. Not sure if it helps in any capacity at this point, but it is part of my "emotional support CH response kit" that I have been bringing with me. I know I am getting to the end of my cycle as its not reacting to the usual tools. But I am still using them all just in case!
    1 point
  48. LOL Instantly had this flash in my mind
    1 point
  49. I’m very impressed, but hope to find something similar in the UK. My demand valve arrived today and is working well. I got the oxygen free on prescription but opted to buy a demand valve myself. I’m just delighted to have been taken seriously by my doctor at last
    1 point
  50. I like beers and do fine outside of a cycle. When the cycle is near I will get kip 5 pain about an hour after drinking some for about a week then it's full blown attacks if I drink a beer in cycle.
    1 point
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