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  1. 4 points
    The Beast is back. Have had 5 clusters in a week now, and they have been proper strong ones too, not my normal KIP 2-3. These have been in the 5-6 range, and lasting much longer than normal, e.g. 15 minutes instead of 1-5 minutes, but still! Was woken up in the middle of the night this past week, and that's extremely rare for me, even when in the full depths of Hell. So, just tracking things for now. Trying to get clear enough away from triptans so I can power up a fresh busting routine. Think I have enough meds on hand for 6-7 busts, at least. Time to dig my farming gloves out. Stay safe everyone. Mox
  2. 3 points
    holy crap! I just used oxygen for the first time (correctly) to abort an attack. At 20 lpm, for about 6 min, 10 lpm to follow slowly. Wow. Now, my tank only goes up to 5 lpm unfortunately, so I can probably not get many aborts per tank. I am having serious anxiety about this. I’m hoping my supplier Can give me more than one tank at a time. I’m calling tomorrow to ask. Just wanted to share some positivity. Kat
  3. 3 points
    Kat if your oxygen is being delivered to you you will want to be good friends with the delivery person. Most likely they do not know how many tanks you are supposed to have so when you place your order for 3 tanks and only leave 2 tanks out for the exchange 9 times out of 10 they will just take the 2 tanks and leave you 3. You can build your stash like this over time so you do not worry about running out over a long holiday weekend or anything. Just stay on top or your refills and build up your stock pile of tanks slowly. you will get the hang of how much O2 you will need per hit and be able to keep your supply well stocked for when things take a turn for the worst. A few extra tanks and regulators will save your ass one weekend and you will be so happy you were prepared. Your other option would to be just ask the supplier for more tanks but I have ever know that to work out very well. I am glad to hear you had success...
  4. 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).....
  5. 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!
  6. 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.
  7. 2 points
    A few people were interested in my comments on sleep and psilocybin. I first began looking at it because it linked in with PTSD/REM-behavior disorder and the hypothalmus, both of which are elements of the rare sleep disorders my son and I experience, and of course for many CH patients their attacks seem to have a relationship with REM sleep, let alone also originating in the same area of the brain. For your interest, here's a brief commentary from a neurology researcher on cluster and sleep
  8. 2 points
    Got it. Beer does the same for me! Missing my IPA’s right now. Thx for the reply.
  9. 2 points
    https://www.scientificamerican.com/article/the-power-of-psychedelics/ more positive news in a reputable publication
  10. 2 points
    For basics, click on the blue "New Users..." banner at the top of any page. Rivea corymbosa seeds (in most places) are "over the counter" in the sense that they are legal to purchase and possess, yet are very effective busting agents. To discuss any of this further, you'd want to start a thread at one of the more private boards ("Share Your Busting Stories" would work, or "Theory and Implementation").
  11. 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
  12. 1 point
    Hi and welcome Nagroms! Mine taper off somewhat. The normal 4 per night becomes three and so on. I do not trust that I am out of cycle for a week with no hits. I do not try the beer test for a few more weeks. Big trigger! ATB!
  13. 1 point
    If you can get the oxygen script from you doc and find a company to deliver it to you they will most likely not have the mask and regulator you will want to use. Just take what they give you and then go out and get your own supplies. You will want to ask for more then one tank and more then one size. M and M60 tanks are larger tanks that are good to keep at your home and hold a larger amount of O2, E tanks are smaller and good to keep in your can to take to and from work or just a day out on the road. You will want a regulator that has a flow rate up to 25 LPM and a cluster mask that has a large reservoir bag on it so you can get a deep lung full of only O2 and no outside air. I will attach links here so you can have a better idea of what people get. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  14. 1 point
    The pills barely work in any event. If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it. For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  15. 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.
  16. 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
  17. 1 point
    Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every night and getting through 2 big bottles of oxygen a week. I was a mess and CH had just taken over my life. Tried magic mushrooms which unfortunately was an awful experience as well. Finally went to see a CH specialist doc who turned things around for me, weaned me off the Imigran injections and sprays and put me on verapamil. His opinion is that there’s a dose for verapamil that will work for every CH patient, but of course some people can’t take a high enough dose due to health problems / blood pressure etc. Now whenever I feel a new cluster period coming on I start straight on with 560mg verapamil a day (taken in 4 doses over the day), and I’m allowed to up that to 960 if it’s not quite working. I also take 4000iu vitamin D throughout the year now as a matter of course (thanks Batch). Right now I’m nearly 3 months into this season’s bout and my days are completely pain free. At night I’m still being woken by 1 or 2 clusters, but they’re a 3 or 4 pain max and I just roll over to my oxygen, 10mins sucking on the o2 and I’m straight back to sleep. Now I always make sure to have my ammunition tucked away safely at home ready to grab whenever I feel a new season starting: 2 week big-dose Predinsolone steroid dose on a taper - these are to have while the verapamil starts to work as it can take up to 2 weeks. I think the steroids are actual magic as they work within 24 hours and give you a week pain free - you can even drink alcohol, but ideally I think people are only supposed to use once or twice a year due to long term effects. Lots of packs of verapamil stocked piled during my none-CH periods. 2 full Oxygen cylinders in the garage Fortunately I’m in the UK so verapamil prescription costs me £9 for 2 weeks worth and Oxygen tanks are just delivered for free whenever I call up and ask. Thank you NHS . It’s really empowering to feel like you’re winning the fight, and I’m sure I’ll have bad clusters again at some point, but right now I’ve got my defences all shored up and the enemy can’t get through. TLDR: - If you’ve not tried high dose (500mg +) verapamil and you’re in relatively good health, please speak to your doc about it. Remember it can take 2 weeks to feel the effects, and you’ll feel shitty, dizzy and a bit poorly for a few days. It will pass. - Oxygen is a basic necessity and every CH sufferer should have this. - Try and stay away from Sumatriptan if you can - it’s instant relief but with long time problems.
  18. 1 point
    Hi Mox Thanks for your message. That's good to know the RC seeds are available. Do you keep your Vitamin D levels up? Have you been doing it a long time? Does is stop CH for you? Sorry for the questions, I'm so keen for this to work. The swelling came on suddenly last Sunday, which is the day after I took the weekly 50k IU vitamin D tablet. It may be nothing to do with the regime and I'm just getting arthritis in my old age, but seems coincidental. I will swap back to the 10k IU a day gel caps I think as maybe that will be easier for my body to handle. Tess
  19. 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
  20. 1 point
    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!!!
  21. 1 point
    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.
  22. 1 point
    It sounds like you would benefit form another opinion regarding your diagnosis. There is no competent physician who would be offended if you sought out an opinion. You have had imaging and have had this for a long time so it's unlikely something like a tumor. Cluster headaches are a diagnosis of exclusion which basically means if the symptoms fit and nothing else is found; you have cluster headaches. Personally I believe if you have the classic symptoms and O2 used properly knocks out an attack: diagnosis is straightforward. The diagnosis and treatment of cluster headaches is pretty unique so a proper diagnosis is appropriate. There is a whole constellation of severe headache called trigeminal autonomic cephalgia (TAC) many of which have a nuance treatment unique to that type of headache. You are in an awkward spot if the O2 advise from @jon019 doesnt' abort an attack I would pursue another opinion.
  23. 1 point
    ...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan
  24. 1 point
    Hi, I am an engineer from Mexico. CH started when I was in high school, though they were fewer and a lot less painful then. CH got really bad in 2014, since then they have been coming every year and lasting from September - November. Before I share my last cycle experience. I want to make it clear that it was hell, pain would put me on my knees and make me lie down on the floor, I would hit the floor/walls with my fist, some times with my head, I cried, I screamed, I even ended a long term relationship because of it. It was a very dark time for me. She left on august, CH hit me the first week of September, it was bad. I'm not trying to be negative and bring you down, I just wanted to make clear that CH for me is as bad as it is for every one else, and since I kind of came up with a solution (I hope) I didn't want you guys to think that maybe it worked for me because my problem is not CH and may be a migraine or something else less severe than CH. I was diagnosed during university. Diagnose was confirmed by a neurologist back in 2013 when it become a problem because of the severity of pain. I could not attend early classes at graduate school because of CH. Since 2013 I've tried different drugs (medicine), oxygen, everything legal and prescribed by a neurologist. And the results were not very promising, you know how it is. Drugs kind of help, but the result (at least in my case) is far from solving the problem. 2017's cycle was 3-6 episodes a day, sometimes 8. And oxygen would only delay the 10 level pain (I rank it from 1-10, 10 being wanting to.. you know). As I said, it was hell. During 2017's cycle I noticed that doing pull-ups would abort almost immediately the pain, but the attack would come again later. So during work if I felt it was coming I went to do pull-ups and it worked 100%. The problem was that after 3-4 attack attempts I was exhausted and would just let the next one hit. Then I would use the oxygen. So the attacks were inevitable. The pull-ups (push-ups and running too) helped me to abort attacks but I had to face them at the end. The cycle was over and I became curious about the pull-ups, so I did a little research. I don't want to make this a long letter, so I will be straight and tell you some medical findings and facts. What is the mechanism that causes CH? *The pain from CH is caused by the dilation, or widening, of the blood vessels that supply blood to your brain and face. This dilation applies pressure to the trigeminal nerve, which transmits sensations from the face to the brain. It is unknown why this dilation occurs. Sugar *Glucose, a form of sugar, is the primary source of energy for every cell in the body. Because the brain is so rich in nerve cells, or neurons, it is the most energy-demanding organ, using one-half of all the sugar energy in the body. *Sugar may trigger hormonal changes, particularly in the hormones epinephrine and norepinephrine. These hormonal shifts change the way blood vessels in the brain behave, potentially triggering a headache. *Elevated blood glucose harms blood vessels Testosterone and serotonin levels on CH sufferers *It was found that testosterone levels are lower than they should during cycles. For some reason, our testosterone levels drop during cycles/episodes. *Serotonin releases get out of control during episodes. What did I do? So basically I tried to restore to normal whatever hormones were low, avoid sugar and processed foods because of all the chemicals they have which might act as neurotransmitters or get mine all jerky and bad. Sugar NO SUGAR: On January 1st 20018 I cut sugar 100% from my diet. I have not had a single snickers/milky way (oh how I loved those!) in a year. Now don't get confused, sugar is not fructose. I mean I kept eating fruits, but quit refined sugar. Testosterone and serotonin levels As I said, I tried to restore to normal hormones levels. Did you know that ketogenic diet has helped treat CH? Guess what diet helps you get testosterone levels up? A protein rich diet. Guess what's in the ketogenic diet: lots of protein. Guess what else helps you with testosterone? lifting weights. I had never been a gym guy, but this time it was worth a try so I bought some weights and was very disciplined about it. Thas it, it worked 100%. I will edit and continue the post telling you how I know it worked but It's almost 2 am so I'm going to bed. I hope this helps you and gives you hope. Best wishes for 2019! J. Pablo
  25. 1 point
    MG - Agreed that hormone levels has something to do with it, certainly in at least some people. This is an interesting set of research by Dr. Rozen - http://www.ncbi.nlm.nih.gov/pubmed/?term=clomiphene+and+rozen+and+%22cluster+headache%22 According to Wikipedia, Clomid does the following in men (off label of course): Clomifene citrate has been found very effective in the treatment of secondary male hypogonadism in many cases.[14] This has shown to be a much more attractive option than testosterone replacement therapy (TRT) in many cases because of the reduced cost and convenience of taking a pill as opposed to testosterone injections or gels.[15] Unlike traditional TRT it also does not shrink the testes and as a result can enhance fertility.[citation needed] Traditional TRT has the risk of inducing a chemical gonadectomy, although with monitoring and low-dose hCG as adjunct, this is usually preventable and reversible.[16] Because clomifene citrate has not been FDA approved for use in males it is prescribed off-label. Due to the fact that Clomifene is now a generic medication in most markets, it is unlikely that a drug company would pursue FDA approval for use in men now because of limited profit incentive, mostly due to the relatively small market potential.[17]However, the single isomer of clomifene, enclomiphene under the brand name Androxal, is currently under phase 3 trials for use in men.[18][19] So maybe this is something we should collectively be mentioning to our doctors.
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