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  1. 3 points
    .....thank you for the share.....it's delightful to hear when a clusterhead (so their family too!) finds success..... ....always breaks my heart when folks say "O2 doesn't work" when it might be, just might be, a matter of mask +/or flow +/or technique.....and some of them will miss the life changing miracle I know oxygen to be.....because they didn't pursue it..... ....good onya for keeping at it til ya found what works for you.....truly one of the problems with oxygen therapy is that there is no "right" way...beyond the basics, ya gotta find out some stuff on your own (incl right here).....
  2. 3 points
    I feel like I’ve finally mastered using oxygen and it’s made me less dependent on sumatriptan. I’ve learned everything from clusterbusters since my doctor was skeptical about oxygen. Here’s what works for me. Headache is usually bearable in under 5 minutes but I continue for 10-20 until I can’t really feel it at all. Breath in as deep as you can and out at deep as you can before you turn on your oxygen for 30 seconds or so (slow really deep breathing). Turn on your oxygen. I use the mouthpiece with no mask (Only breathing through mouth). If you use the mask you can breathe through your mouth and nose. The pressure only needs to be high enough to fill the bag in between each breath. If oxygen is blowing out the mouthpiece between breaths, you’re waisting oxygen and can turn down your regulator a bit. I highly recommend the actual “Cluster O2” kit. I messed around with a cheaper version that looks similar that didn’t work. Here’s a video that I stumbled upon. Sounds like he’s also a clusterbuster member but I don’t know his name. It’s a great tutorial: https://m.youtube.com/watch?v=PtFHRIQN17s Hope this helps. Stick with it! I’m glad I did. I almost gave up on oxygen many times but kept reading about it and trying different things. Good luck!
  3. 3 points
    A while back I posted about migraines kicking my butt and getting some CH hits, this caused me to hit the Zomig which led to migraines every day. I am a strange case as I never get a CH without having migraines for several days in a row and when I get the CH attacks the migraine stays after the CH attacks go away. I stopped the Zomig and stopped the D3 regiment as a reset so to speak. I went a month using nothing but 02 and Advil Pm with energy drinks, this seems to help if I do it the instant I feel a Migraine coming on. I started taking the D3 regiment again and I am glad to say that things have been doing well. The migraines are down to 2 or 3 a week and the CH have been dormant.
  4. 3 points
    G'afternoon @omarmosleh! Just curious if you've received any email responses yet? I've seen 2 comments on my Facebook thread so far...I've met one of them at our annual clusterbusters patient conference in 2015 and she said she'd be willing to speak to you....I also chatted with a young man from Alberta who I've been mentoring for the past couple of years and he said he'd get in touch with you as well. I've also reached out to a Canadian doc that I've known for many years, and who has many years of busting experience but haven't heard back from him yet. Thanks for your interest in this project! Dallas Denny
  5. 3 points
    You will want to take the D3 a few hours away from your verapamil. I do Veap first thing in the morning when I wake up around 5AM, D3 at about 5PM and Verap again about 930pm.
  6. 2 points
    Hi Omar I am a Canadian in Montreal and newly diagnosed (formally this year). This cycle has come on strong and hard, multiple daily attacks, 8 weeks so far. I am early in my journey treating this but I am also a research scientist (Immunologist) and have reviewed the literature on psilocyban/LSD even before I became a CH patient. I am making plans as we speak to try a busting treatment. You are welcome to contact me if you are interested in discussing my experience. Julie
  7. 2 points
    Hi Kat, This will interests you... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756 Look for the entry from Batch (in its typical large bold font ) and he explains that breathing method in detail. For me that last crunch as deep as possible to get the last part of CO2 out of your lungs before inhaling again is the most important part of the technique All the best ! siegfried
  8. 2 points
    kat_', you might be making a wise and perfectly good decision about this. But do keep in mind that here and at other CH sites, people are there because things haven't worked for them. A few people have showed up here to say that Emgality, Aimovig, or some other medication of that type has helped them, but for the most part, people who find relief from something are not likely to be here, so the comments are skewed toward the negative, which might not represent the whole picture.
  9. 2 points
    What you are doing with the O2 - inhale, hold, and exhale with a crunch seems to work best for most of us. Not being able to get enough O2 per breath sucks. You need the cadence that works for you and plenty of O2 to maintain that rhythm that is most effective for you. It is often the case that a 25lpm regulator is needed. So, I am not surprised that the tank with the 25lpm works better for you. If you can outrun it, you need a higher flow rate. If you still have a shadow when you quit the O2, the hit will return for most if not all of us. And when you are PF, do your post breathing as well.I have walked away from my tank with a 'minor' shadow, only to have it ramp right back up and I do a bat turn back to the O2. It needs to be completely gone for me and then 5 minutes of post to remain PF for a some number of hours. And heading to a new locale can begin a cycle sometimes. So, I suggest that you keep the Benadryl in the mix. Maybe only at night when you are traveling, but once there, go back to taking the ones during the day if possible. The different pollen can be a big problem. ATB and Welcome to the site!!!
  10. 2 points
    hello, yes ! I've had a number of people reach out to you, you've been tremendously helpful Mr. Denny. Never underestimate the power of the internet. Really appreciate your help with this. I'll be sure to post the article here when it goes online. Will either be this weekend or next. It explores a lot of interesting developments.
  11. 2 points
    Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet spot - one where I notice a significant reduction in pain. I will repeat that pattern for that hit. For me, it varies as to the time to find the 'spot' that is going to work with each hit. In short order, you will know what works for you. I use the tube as I cannot stand the mask on my face. If I see that the bag is filling too fast, I turn down the flow. I may go up or down a few times in a hit. Pain worsens, dial it back up and get to work. Pain lessens, begin to relax and go with the flow. I vary the flow from 25lpm to 5lpm. My post is at a rate that matches my relaxed breathing post hit. Often, if I am tired, it will be at 5LPM or lower. CHF will likely be along to direct you to a paper on how to use your O2. I haven't time atm to find it. But, the above will get you going. To conserve, adjust the flow on your regulator to match your breathing. That is all. To make you visit as short as possible, do the forceful exhale and deep inhale. If the bag is filling too fast, turn the dial down till you catch up. The focused technique is important to me. I usually get a good abort in about 5 minutes and then 5 minutes post. For a really bad one or one where I had to wait to hit the O2. that time can be doubled. If you can, grab some caffeine on your way and chug it. It often helps speed the abort. Not sure if you use can caffeine or not, but if you can, it helps. Which conserves your O2.
  12. 1 point
    Rebounds (Or Medication overuse headaches) are a cycle of increased frequency of headaches, or intensity of headaches, because of medication use or overuse. I can’t say definitely that I’ve experienced rebounds, but have found myself in seemingly repetitive use cycles where I wondered if my sumatriptan use was increasing the number of daily attacks. I haven’t found much proof of sumatriptan causing rebounds but have read many cautionary tales from other patients. Oxygen seems to be the accepted alternative and works just as well for me. It is however much less portable.
  13. 1 point
    ...boy that's an old one I haven't thought about for a long time...tried in the 80's to no effect.....relative of lsd so in theory effective...."supposed" to only be used in intractable cases (as a prevent) where other meds fail, as it has potential very bad side effects (note, with EXTENDED use).....requiring a periodic drug holiday.. ....having not seen any significant reported success with this over the years, I am initially inclined to be dismissive.....but it all depends on where you are on the spectrum that only you know....as Chfather recently pointed out....we are far more likely to see failure stories than success....still, it's a long shot....
  14. 1 point
    Might not be any detriment. But . . . According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze." https://www.nhs.uk/medicines/diphenhydramine/# Looks like maybe Tesco also sells it (??): https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html
  15. 1 point
    ...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies... ...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation.... ....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective.. best jonathan
  16. 1 point
    Hey Rudolf, Good questions. For starters, the following chart comes from the online survey of 313 CHers taking this regimen of which 257 (82%) experienced a favorable response in the first 30 days. The favorable response was a significant reduction in the frequency of their CH from 21 CH/week down to 3 to 4 CH/week as illustrated the normal distribution and cumulative probability curves for their 25(OH)D3 serum concentrations measured ≥30 days after start of regimen. As you can see, the mean 25(OH)D3 response is 80 ng/mL (200 nmol/L) with a min at 30 ng/mL (75 nmol/L) and max at 175 ng/mL (437 nmol/L). The blue S-shaped sigmoid cumulative probability plot illustrates the therapeutic response range as a probability. Ordinarily, I would shoot for a 25(OH)D3 serum concentration between 200 and 250 nmol/L (80 to 100 ng/mL) to ensure a higher probability of a favorable response. However, as you were unable to get a PTH lab, your serum calcium concentration is up against the normal reference range upper limit bump stop, you're not in a CH cycle and you're experiencing joint pain, I would hold off on any further loading doses and drop back to a vitamin D3 maintenance dose of 50,000 IU/week along with all the cofactors. After you've been on the vitamin D3 maintenance dose for a week to 10 days, do try to press your PCP/GP for a complete set of labs for your serum 25(OH)D3, calcium and PTH all at the same time. This is the only good way of assessing normal calcium homeostasis. Are you taking at least 400 mg/day magnesium and the vitamin K2 complex? The vitamin K2 complex menaquinones, MK4 and MK7 have the capacity to reduce calcium accumulation in soft tissues, joints and arteries while serving as a catalyst in building bone mineral density. If you're not taking the K2, I would start it as soon as you can get some. I take the LEF Super K with advanced K2 complex as it has both MK4 and MK7. If you haven't already done so, I would add Turmeric (Curcumin) at 1000 mg/day, 1000 to 2000 mg/day Omega-3 fish oil, and 3 grams/day liposomal vitamin C (1 gram every 3 hours). Curcumin and the Omega-3 fatty acids are anti-inflammatories so should help with the sore knuckle. Vitamin C is essential as the human genome lost the gene that expresses the enzyme needed to synthesize vitamin C from simple carbohydrates. Vitamin C is essential in synthesizing collagen needed by cells throughout the body including the cartilage in joints. It's also a potent antioxidant that supports hundreds of enzymatic reactions. Regarding the swollen knuckle, I've not seen this as a side effect from vitamin D3 therapy or taking the entire anti-inflammatory regimen in the 9+ years I've been tracking results reported by thousands of CHers taking this regimen. In most cases, vitamin D3 and Omega-3 fish oil would tend to reduce inflammation like this, hence the anti-inflammatory name I gave this regimen. That said, anything is possible. The Kirkland Adult 50+ Mature Multi is formulated with 220 mg of calcium here in the US. It may be different in formulations available in the UK and Europe. For reference, I'm a chronic CHer so have taken this regimen daily since I developed it in October of 2010. I've been essentially CH pain free the entire time and I keep my serum 25(OH)D3 above 100 ng/mL (250 nmol/L) all the time. My PCP is okay with this as long as my serum calcium remains within its normal reference range. I switched to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in 2018 and have been taking one D3-50/week since January of 2019. The 3-year chart of my labs for 25(OH)D3, calcium and PTH illustrates both the safety of vitamin D3 at higher doses as well as normal calcium homeostasis. That is illustrated by the inverse relationship between serum calcium and PTH. As the calcium serum concentration goes up, the PTH serum concentration drops. This keeps serum calcium within its normal reference range by pulling less calcium from the gut. Take care and please keep us posted. V/R, Batch
  17. 1 point
    Hi CHfather, thank you so much for replying. That sounds like I'm on the right track with the Vitamn D levels. Maybe I'll just maintain this level and see how it goes. I do have oxygen provided by the NHS fortunately and that is all I have been using for the headaches if I haven't managed to stop them with MM. My last two episodes were unrelenting though, especially at night time leaving me hardly able to function in the day. Having two kids to look after as well as work, CH is getting harder to cope with as I get older, although I'm fortunate to be episodic and I know many people have it a lot worse. I will try and contact Batch and will look into the RC seeds, thank you again.
  18. 1 point
    Hi Eggman, A TAC can come with many different autonomic symptoms. It is not always a red eye or tearing eye. It can also be a stuffed or running nose among many others. And the most important, following the ICHD-3 classification, it says: C. Either or both of the following: at least one of the following symptoms or signs, ipsilateral to the headache: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – miosis and/or ptosis a sense of restlessness or agitation So technically, the most important symptom is a sense of restlessness. And that is also how a probable TAC is defined these days... strictily unilateral sidelocked headache with a sense of restlessness. That is a red flag for a TAC. If you are restless, other autonomic symptoms are technically not required for the diagnoses. Apart from the above autonomic symptoms there are also alternative ones: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – forehead and facial flushing – sensation of fullness in the ear – miosis and/or ptosis I have myself very little eye tearing, quite some nasal congestion but the fullness in the ear is a big one for me ! I don't have CH but CPH but that doesn't matter... the autonomic symptoms are the same All the best ! siegfried
  19. 1 point
    I think everything is well covered here. As I understand it, Batch's recommendation from 2017 is different from what he recommended in the 2011 post linked to by Siegfried. The 2017 one (which seems like it would seriously save O2) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Here's what I understand him to be saying. (1) For 30 seconds, hyperventilate using room air. That's ten three-second deep inhale/full exhale events, deeply inhaling and forcibly exhaling during three seconds each time. He says, "On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing." (2) Then inhale a big lungful of O2 and hold it for 30 seconds, exhaling with a crunch. (3) Then do another 30 seconds of hyperventilating with room air, followed by another inhale of O2 that is held for 30 seconds and exhaled with a crunch. Although he's describing this in relationship to the "red neck bag," I assume there's no reason to think he wouldn't recommend it with an O2 tank and mask. You'd want your lpm setting to correlate with the one minute between inhales of O2, which I would think would mean that you could use a lower lpm setting. You should read fully what he says here and at the other post. I just found it a little difficult to figure out the basics, which is why I summarized them here. He says in the 2011 post that you should stand up while doing this, leaning against a wall. Doesn't say that here, so I don't know whether he still thinks it important or no longer does.
  20. 1 point
    @Rod H hey thanks for the words of encouragement. Confirming a chronic diagnosis has been a depressing pill to swallow. My next step is immediate release verapamil, if not I’ll bust with MM. I have a schedule all set up. I actually began the loading dose 3 days ago of the d3 regimen because I figured what the heck. Maybe something got out of wack. And low and behold, I’ve had only one mild attack last night and only shaddows today
  21. 1 point
    Hang in there kat I've been in cycle since April 22nd. If this was easy we wouldn't be here. You got this
  22. 1 point
    @omarmosleh I know several Canadian clusterheads who bust, with your permission I'll be happy to copy/paste your post and contact info to a Facebook support group for clusterheads where they are members. Dallas Denny
  23. 1 point
    I have had times when it seems like the oxygen is not helping abort the attack totally and only helping when I am using it. Like CHfather mentioned using the 5hr drinks can sometimes give you that bump to put it over the edge just enough to kill the attack off for a few more hours. I am not sure how long you have been taking the Benadryl but I try to only take it for a week and then stop for at least another week. I feel as if it somehow builds in my system and become less effective, I have no idea if that is true or not. I was on the Verapamil 240ER 3 times a day at one point, changed over to the standard or fast release and dropped down to only taking 120 twice a day. I don't know if that would be better for you or not but something you may want to look into. As fat as more hits more often that is something that people see happen over time. Cluster change and sometimes it is for the worst. You will just need to ride it out, adjust your treatments and hope for the best. We all have tried many different things like different breathing techniques, hot or cold towels pressed on your face or neck, hot water to put feet into, ginger tea, drink cold water with a straw to hit the roof of your mouth. I am sure we have 100's more here and you may have read them all but like myself they slip the mind when all the pressure builds and the fun begins. Good luck with your move, we will be here when you are all settled in and are willing to help.
  24. 1 point
    @EggMan welcome i don’t get autonomical symptoms either with my headaches. I get pain mostly behind my head and ear, also behind my eye. I was wondering if I had occipital neuralgia because an MRI of my neck a year ago showed an inflamed ligament at the base of my neck. I was told I needed physical therapy but I can’t afford that. Have you found occipital neuralgia treatments are helping? Kat
  25. 1 point
    Tony2, Please see the post right above yours for some verapamil-related info. Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect. You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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