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Showing content with the highest reputation since 07/11/2020 in Posts

  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. 1 point
    @EggMan I myself haven’t had much luck with many treatments I’ve tried, except for oxygen. That works great for aborts. But preventatives are where you want to go because you need to get them under control. I was given emgality as well. But I never took it. I feel like for me, it will cause more harm that good with clusters. I’ve heard people with migraines respond very well to Emgality. But clusters and migraines are so different. If you are open to trying different treatments, I would go for it. I am apprehensive. Kat
  12. 1 point
    Hi Spiny, If your perception is that you dream 'early' in your sleep cycle and if you have any other symptoms suggesting dysregulated sleep or sleep deprivation, it may be worth getting sleep study. Rapid onset REM-stage sleep is a classic feature of Narcolepsy, or if you feel like you 'dream all night' it could a result of repeated arousals during REM sleep (like me, I have severe REM-stage sleep apnea). To be clear though, if you're getting restorative sleep and not having any other sleep-related issues, it's unlikely there's any significant problem. I'm new on cluster science but I've become quite expert on sleep disorders over the past 20 years. Several are mediated in the same area of the brain, involving the same signaling pathways, as are described for cluster patients. I'm not surprised at all that there is overlap and I think as the science progresses we'll find sleep disorder comorbidity is more common among CH patients than not. Julie
  13. 1 point
    kat', sooooo happy to read this. You want an M tank or an H tank (plus you want to keep your smaller tank for portability). Those are the big ones. The big tanks are heavy, so you might also want a stand, or particularly a rolling stand if you have to move them. Now that you know more about O2 working for you, you can consider using welding O2, too, if your supplier is not cooperative. Since they make more money when they provide you a larger tank (or tanks), and have less hassle from having to constantly replace the smaller tanks, you'd think they'd be interested. If you get a bigger tank, or any kind of welding tank, you'll need a different type of regulator. An O2 supplier will know this, but you'll need to know it if you go the welding route or if you decide to buy a higher-lpm regulator than the one the O2 supplier would give you. Keep us informed.
  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
    ...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....
  17. 1 point
    Hey Tess, Sounds like you're on the right track with all the supplements and your plan to switch back to the liquid softgel vitamin D3 formulation. If you add 50 mg/day zinc picolinate and 400 to 800 mg/day Quercetin, you'll have an immune boosting combination that should lower the incidence of viral infections as illustrated in the following photo of what I've been taking since January of this year. There's ample medical evidence of efficacy in reducing viral infections for vitamin D3, vitamin C, zinc, and Quercetin in the form of RCTs. There's an extensive list of vitamin D3 studies at vitaminDwik.com at the following link that provide additional proof of efficacy in treating or preventing 88 health problems. https://vitamindwiki.com/tiki-index.php?page_id=1336 I was on travel in February and went through Seattle when the COVID-19 Pandemic epicenter was there and I've also flown to Juneau, Alaska from Seattle in June so have I've been through two rounds of the COVID-19 Reverse Transcription - Polymerase Chain Reaction (RT-PCR) assay labs with negative results both times over the last two months. As a side note, I've not had the flu since I developed and started this vitamin D3 regimen in October of 2010. Same for my wife. Between us we've had less than a handful of colds since then as well. Carol Baggerly at the GrassrootsHealh Nutrient Research Institute has been all over the relationship between vitamin D3, vitamin C and zinc status as they relate to COVID-19 severity like a hawk on a June bug as illustrated in the following graphics. Please keep us posted. Take care, V/R, Batch
  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 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.
  20. 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.
  21. 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
  22. 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/
  23. 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
  24. 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.
  25. 1 point
    sooo .. (this is for my benefit .. sometimes I bounce the ball but don't follow it) Vitamin D increases the release of Dopamine ,, which restrains the release of Prolactin which at high levels can produce Cluster Headaches. aaaannddd since Psilocybin increases the dopamine levels this might fit..