Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation since 12/26/2024 in all areas

  1. Today marks four years since my first (and, so far, only) CH cycle. It lasted about seven weeks, with two daily headaches at 10 a.m. and 7:30 p.m., like clockwork. I had no idea what to expect and had basically been told to prepare for them to come back at least once a year. But here I am, four years later, still waiting for The Beast to show up again—and hoping it never does. My first episode was triggered during a flight descent while I had a mild sinus infection. I was pretty nervous the next time I got on a plane, but nothing happened. I was also on edge when the first anniversary rolled around, expecting it might make a comeback, but... nothing I’ve never flown with a sinus infection again—not on purpose, it just hasn’t happened—but I still think that had something to do with triggering that first episode. It’s one of those things I’ll probably never know for sure. This anniversary got me reflecting, though. I’m so grateful for finding ClusterBusters back when everything felt so grim after my diagnosis. It made me wonder—are there others out there who’ve only had one cluster, or who’ve gone years between episodes? As for “busting,” I’ve done it recreationally about once a year—sometimes just a little dose at a party, other times a bigger dose while chillaxing with my wife or friends. I do wonder if it’s kept The Beast away, but honestly, I was busting occasionally even before CH, so who knows if there’s a connection. Cluster headaches are such an unpredictable, personal experience. I hope I never have to learn more about mine firsthand. I feel so lucky to have had nearly four years without them, but I still think about them probably five times a week. My heart goes out to those who don’t get this kind of break and have to deal with The Beast regularly. You’re stronger than most people will ever know.
    4 points
  2. Here's something from 2019: https://pmc.ncbi.nlm.nih.gov/articles/PMC7802413/ "As previously mentioned, it is still unclear why oxygen exhibits such good efficacy in the treatment of CH. The vasoconstrictive theory was prevalent in the early 20th century until Wolff et al. found that ergotamine constricted external carotid arteries and simultaneously relieved migrainous headaches.20 Therefore, they proposed that headache is caused by vasodilation rather than vasoconstriction. The study was published in 1938 and overturned the past theory.20 In 1961, Horton7 proposed that histamine cephalalgia was caused by the vasodilatation of extracranial vessels, and that oxygen was a vasoconstriction factor. If the vasoconstrictive effect of oxygen exists, oxygen therapy should be effective for both migraine and CH. However, the oxygen treatment is only effective for CH. In the 1980s, some studies reported a decrease of cerebrospinal flui in patients after breathing 100% oxygen as compared to breathing room air.21 Since then, animal model studies have demonstrated the protective, anti-inflammatory role of hyperoxia in microcirculatory inflammation. In 2006, Schuh-Hofer et al.11 demonstrated that hyperoxia can inhibit dural plasma protein extravasation in rats. Recent studies have suggested that CH is associated with some brain structures, including the trigeminovascular system, the cranial autonomic system, and the hypothalamus. The activation of the trigeminovascular system is thought to play an important role in the pathophysiology of CH. Goadsby and Edvinsson22 attempted to demonstrate the associations between hyperoxia and neuropeptides, and the results indicated that a significant reduction of calcitonin gene related peptide concentration in the jugular vein after oxygen treatment occurred, which suggests a possible effect of hyperoxia on trigeminal afferents. However, animal experiments have shown that oxygen does not directly act on trigeminal afferents, but appears to play a key role at the parasympathetic pathways.23 At present, studies assume that oxygen may act as a terminating factor in CH attacks. More research is needed to clarify the specific mechanisms of oxygen treatment for CH. Table 1. The history of oxygen used for cluster headache Study Year Findings Alvarez et al.15 1940 First use of oxygen for headache at a flow rate between 6 and 8 L/min. Horton16 1952 First description of oxygen used for histamine cephalalgia. Horton17 1955 Oxygen treatment in 1176 patients with histamine cephalalgia. Horton7 1961 He raised the vasoconstrictive effect of oxygen in histamine cephalalgia. Kudrow et al.18 1981 First systematic study on oxygen used for cluster headache. Fogan et al.12 1985 Crossover study found that oxygen was more effective than room air. Cohen et al.19 2009 Oxygen at 12 L/min, as well as at 7 L/min, was effective. Open in a new tab Figure 1. Open in a new tab The possible mechanism of oxygen in cluster headache. Note: TCC: Trigeminal cervical complex.
    4 points
  3. ...if you are subject to drug testing it is wise to be EXTREMELY careful with CBD in any form. it is NOT FDA regulated and packaging labelling is notoriously incorrect in this area. ...not to say ineffective...i know not....just go in eyes wide open. even strictly regulated N/A beer has 0.5% alcohol in it...i would be surprised if many/most CBD products don't contain some amount of THC...
    3 points
  4. The specific cyclic nature of these (a month or so on, a month or so off), and the very long attacks ("hours" is not particularly unusual, but "days" certainly is), suggest to me that it's not CH that you have. When you say "Severity does change slightly during that period but it's very painful the entire time," it does make me think of a condition that is a kind of CH "look-alike," hemicrania. There are different forms of hemicrania (hemicrania continua (https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua) and paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment). Neither one is precisely what you have described, but you might be close to episodic hemicrania continua. Hemicrania typically (but not always) does not respond to sumatriptan injections, which you might have been prescribed for a migraine diagnosis. Hemicrania also typically (but not always) does not respond to oxygen, which would normally be a prescription for a cluster headache diagnosis. So if your attacks have responded to either/both of those, it would cast doubt (but not conclusively) on a hemicrania diagnosis. It's relatively easy to test for hemicranias, since they do respond to a drug called Indomethacin (when it is properly prescribed). Can you say something about what you have taken to treat your condition? You might want to consider starting on the vitamin D3 regimen, which has been an effective preventive for many severe headache conditions. https://clusterbusters.org/forums/topic/1308-d3-regimen/
    3 points
  5. Hate to break it to you, I've gone 10 years between my 1st and 2nd cycle. Didn't even know what it was the first time. Dr's never found anything and that was that. Some time later i learned about CH and wondered if that could've been it. In march 24 the beast visited again, and i knew right away. Although I got treatment pretty fast and the attacks stopped, I never stopped shadowing since. Headache all day, every day... I'm almost getting used to it
    2 points
  6. 4 years?! That is fantastique - congrats to you @Alvaro! I would guess there's a good chance here that the recreational sort of busting during these 4 years could be playing a major role in your remission.
    2 points
  7. Sorry, but you definitely won't find any sadness from myself over the butchers demise.....and his clinic closed after he was arrested for the murder of one of his patients and his license was revoked!!
    2 points
  8. I think venting when things go badly (in your case, really really badly ) is a good thing to be able to do here. It may be a bit much to hope for, but sometimes, some of us have been known to get a one-off rogue attack, with no new cycle starting up. I'm hoping against hope that this is what could have occurred with you today.
    2 points
  9. Came across an interesting fact that I've never seen mentioned in relation to cluster headaches - our apparent natural "biphasic" sleep pattern which was common up until the industrial revolution. It varied across populations but in this particular article is referred to as: "between 9 and 10pm, slept for 3 to 3 ½ hours during their “first sleep,” awakened after midnight for an hour or so, during which individuals did practically anything and everything imaginable before taking a “second sleep,” roughly until dawn." https://www.news-medical.net/news/20170517/History-of-sleep-what-was-normal.aspx This just so happens to coincide with the 1am wake cycle most CH suffers experience. When at the peak of my worst cycles I also commonly get 9-10pm and 6-7am attacks, which slot in nicely to the start and end of the bi-phasic sleep period. It appears through a study in the 1990s that this may be the most natural sleep/wake cycle for our brains (see https://en.wikipedia.org/wiki/Thomas_Wehr) I find it hard to believe that this is just a coincidence. Has anyone else come across this aspect of sleep behaviour in relation to CH? It may be a piece of the puzzle as it is very much governed by melatonin from what I've read so far.
    2 points
  10. I suppose "satisfactory" is the key word in what you wrote. Certainly there have been possible explanations offered, particularly with regard to REM sleep (Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review - PMC). According to one study (attached here), 2am is the most common time for attacks, but midnight, 1, and 3 are right up there. (Rather than a specific time, it's probably more accurate to say ~90 minutes after falling asleep.) (At least as far as I can tell, the attached study actually tells us almost nothing, since of course people get multiple attacks and they all are counted here.) However, as many as 25 percent of people with CH don't get nighttime attacks, and the number of reported attacks (in the study) at 2pm and 3pm (outside the time range of your theory) isn't all that much lower than the number at midnight or 1am. Well, but why would it want people to be awake and experiencing excruciating pain, or use excruciating pain to wake them? And why, if maybe we all, or most of us, have a biphasic instinct wired into our brains, are so few people afflicted with CH (or just generally, why do so few people wake up, with or without pain, at those early-morning hours, or ~90 minutes after falling asleep)? And why does a daytime nap so often bring on an attack? These questions are not to dismiss your idea, which I think could be part of the puzzle, but to say that there are surely more complex things going on and to agree with you that it would be nice if there were "a neurologist specialising in both sleep and cluster headaches out there who latches on to this." Of course, there are whole cultures that have a biphasic sleep pattern, though not exactly the kind you have been referring to. A siesta in the afternoon along with some nighttime sleep (usually less than 8 hours) is pretty common in many Latin American and European countries. I guess someone could look at CH incidence among those populations. Rozen - Cluster_Headache_in_USA-2.pdf
    2 points
  11. 1. Alcohol consumption increases adenosine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6826818/ 2. High-flow oxygen reduces adenosine. https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2020.00097/full 3. Caffeine blocks adenosine. https://pubmed.ncbi.nlm.nih.gov/20164566/ 4. Adenosine has been associated with cluster headaches. https://pubmed.ncbi.nlm.nih.gov/38127692/ Therefore, I think I'll try reducing adenosine. Coffee is not the only thing that is supposed to work for that. https://selfhacked.com/blog/adenosine-risks/
    2 points
  12. I see a pain specialist at CU Anschutz in Aurora for my migraines and cluster headaches. I see Rachael Rzasa Lynn. She is part of the Pain Clinic at University Hospital. I’ve seen her for about 10 years and she is great and listens to my concerns. She has no issue referring you to neurology or other departments if she feels it is needed.
    2 points
  13. Hi to everyone here im new to this site but i have suffered from chronic cluster headaches for the past 6 years.There has not been 1 day in the last 6 years where i have had a single day without having any where between 3 to 8 severe attacks per day.Ive had everything that medical science has had to offer,sumatriptan ,verapamill,botox injections imgality,nerve blockers,you name it and nothing work as most of those treatments were only proven to help people that had episonic clusters but not affective for chronic cluster headaches. It got to a point where i was that depressed that thinking about suicide was my only option to end my suffering and even went as far as paying $14000 dollars to buy a funeral plan before ending my life.Then after watching several videos of people claiming that taking magic mushrooms or lsd gave far better results in very small micro dosages of 0.4 grams every 3 to 4 days had far better results than any medications with no nasty side affects what so ever i started taking shrooms and to my suprise i was getting alot less attacks per day and not as severe.Then i started looking into something that no one really ever talks about and that is ECS short for Endocannabinoid system wich is something that we are all born with our bodies naturally produce endocannabinods however as we are all different so some of us dont produce enough of this compound in our body and funnilly enough i found that people that suffer from chronic migraine and cluster headaches were the ones that were lacking this enzyme.The reason we have cluster attacks as far as i know is due to vessels in our brain become inflammed and cause the vessels in our head to swell up and put pressure on the trigeminal nerve just above our ear and intern sends severe pain signals to the nerves behind your eye your nose your cheek bone and your jaw line and in my case even my neck.So i thought well if this theory is correct then how can i increase endcannabanoids in my system that my body could not do naturally.And thats where my life changed completely.I got onto a company who was liscenced to sell very pure high grade CBD oil which had no thc in it but had the cannabanoids CBD,CBG and CBN also particularly CBG which has a very powerfull inflammitory property bound to it but also helps greatly with dealing with chronic pain, so i thought well if its such a powerfull inflammitory then if it reduces the swelling in blood vessels in my head then it will not put pressure on the trigeminal nerve.Low and behold from the first day i took a very small dosage of 0.2mlg under my tongue twice a day it was instant.For the first time in 6 years i went a full day without a cluster attack it was almost to good to be true ,but 4 weeks have past since ive been taking this particular CBD oil and my clusters have dissapeared completely.Doctors say they just dont have a cure or know why people get cluster headaches well all i can say is they need to start looking into the endo cannabanoid .I urge any one here suffering from this debilitating illness to try it i mean what have you got to loose buy giving it a try .After having chronic clusters for 6 years without have not 1 day without at least 3 to 8 attacks per day to just stop completely from taking this CBD oil cannot be just a coincidence.I feel your pain and only want to give you another possible option that is drug free with absolutely no side affects that comes with traditional medication,and if you would like to talk to me personally about how to go about it im happy to leave a number if you would like to talk to me personally.
    2 points
  14. I was surprised to see that CHsince99 seems to be getting good results, even preventive effects, from "drowning myself in coffee, " because in the experiences that I know of, the approach that you describe -- limiting coffee only (or as much as possible) to times when it is needed as an abortive -- seems to have made the caffeine more effective for achieving or helping the abort. Very frequently there is new stuff posted here about so many things related to CH, contradicting or challenging what I thought I knew, and there are so darn many possible variables that I don't see a good way to sort them out, except by the kind of question you ask and seeing what the most common experience is.
    2 points
  15. Well, there isn't that, but the core principles are pretty straightforward: > Use the vitamin D3 regimen to prevent cycles or at least lessen the severity of attacks during cycles: https://clusterbusters.org/forums/topic/1308-d3-regimen/ > Yes, there are other preventives that work for some people at the right (usually high) doses, but D3 ought to be enough, and it has no (or far fewer) side effects > To end a cycle and potentially prevent one, busting is a choice that many make (click on "New Users - Please Read Here First" at the top of any page here) > To stop an attack, oxygen is the go-to for most people. (This is discussed, along with a lot of other things, here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/). Many people are finding DMT to be an effective abortive (DMT experiences and advice - Theory & Implementation - ClusterBusters). Triptans in various forms (injected or inhaled) will also stop attacks, but with side effects (see the "basic non-busting information" file above for more on this). > A course of prednisone, if properly prescribed, will typically hold off attacks during a cycle for some amount of time, and can sometimes (rarely, in the experiences that have been described here) end a cycle > There are lots of other strategies that can be used to supplement the above, or make some things more effective (caffeine, for example), and to treat the shadows that some people get. You can read about all that in the linked document from above (https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    2 points
  16. Very interesting line of thought, are you planning a trial of one of the supplements listed in the selfhacked article? Please keep us posted.
    2 points
  17. In what seems to be an almost grey area with 'suicide' viewed as something problematic, we in Canada have access to MAID (Medical Assistance in Death), something I have inquired about, so in a grey area, I do have a plan, but if you ask about MAID you do not get sent to psychiatric, but if you mention having a plan you do. In any case, I see it as my absolute last resort. I feel you @MoxieGirlI am chronic and have up to 8 hits a day, every day, no breaks, with some powerful sleeping pills, I can knock myself out for 30 hours after a day and a half up but those are the longest breaks. I am still trying with the alternate methods but have had some really bad months, death in the family and any hallucinegenic is not great if you go in with a bad headspace and the current crop I have tends to really edge towards disassociating me strongly which is a pretty unnerving experience. All said, we have all wished an end in some way, but you need to reach out, talk, try anything and everything. And talk, to anyone, find a good listener, it goes a very long way in keeping it together.
    2 points
  18. I have ulcerative colitis, and food allergies. As a result I have found many alternative ways to get my Vitamins. For example, I had a lot of trouble getting my D to increase. What worked for me was irradiated baby bella or button mushrooms. (I take store bought mushrooms, spread them on a plate & let them get direct sunlight for about 20 minutes. I just open the window and put the plate on a shelf on my sill. It increases the vitamin D.) To “activate” my body to actually use the Vitamin D, my neurologist recommended in addition to supplements, that I use a light box in winter and actually sit in the sun in the summer. It helps. My vitamin D is almost 80 For the magnesium: If I’m “D” I use a supplement that is a blend of different types of magnesium (life extension brand) if l’m “C” I use milk of magnesia. When in a flare I have to avoid the magnesium completely so I soak in epsom salt - it absorbs through the skin. But can be time consuming. To get the rest, I often use sublingual or liquid vitamins, I use the lowest doses I can to minimize gut irritation. I also don’t take the all every day. Vitamin A was one that used to irritate me, so I alternated it every 2 days, then, I found a meal replacement shake (Spirutein) that didn’t aggravate me, and started to get some of my vitamins that way. If the vitamins don’t work, try whole food sources to get your nutrients. Find a good health food store, it’s a great resource. You can try juicing fruits and veggies to get your nutrients too Finally, if you figure out the vitamin or supplement that is aggravating your condition, post it, and ask for help or ideas. Good luck, I wish you pain-free days and rest-filled nights.
    1 point
  19. I am very curious to look at your work, but because my daughter has CH, I try to avoid the more vivid reminders of what it's like. I wish you the best.
    1 point
  20. @CHfather Thank you! I'll look into it! And I'll share my work as I go along. In the meantime I'll just share this purely artistic rendition I did after my last major cycle. I know it doesn't have the signature droopy eye but I wanted to convey how much pain I get behind my eye. https://www.instagram.com/p/C1tI2uBN7R4/
    1 point
  21. Horrible, horrible, horrible. I am very sorry, and that interviewer should be fired, the bastard. I think it's obvious to us that even looking for work in your current situation is practically heroic. Gotta ask: Are you doing the D3 regimen -- that really makes a big, big difference for most people -- and have you managed to get oxygen? And is this common for you -- a remission period of maybe a couple of weeks and then the attacks come back? It's not clear to me what you mean when you say "The 5 day rule failed me." I remember that at one time you were taking relatively small doses. Am I right that you kept dosing during this remission time? If you want to say more about what you have done, maybe it'll help.
    1 point
  22. Hello, Megan. I hope this works out for you! The only existing graphical things I can think of are the things you can find with a straightforward Google image search. There are several large surveys of people with CH, one done around 2011 by Todd Rozen and others, and another from fiveish (??) years ago by Larry Schor and others. I think you'll be able to find these by googling. They have some graphics, but I'm thinking might be a lot of information in there that could be converted to the kinds of graphic formats you mention. ClusterBusters has led a recent large-scale study that I don't think has been published yet. I'm not sure how much that study is focused on the use of psychedelics to treat CH; the Rozen and Schor ones were most about demographics and how people experience CH. I'm sure you're also aware that there are several books at Amazon about understanding and treating CH. I don't know how much they use graphics (I feel pretty sure that they will have the usual ones -- a brain map showing the hypothalamus; a chart of differences between CH and migraine; some kind of symptom list), or how much you might find there that you could treat graphically. Finally, there is some amazing artwork illustrating the experience of having a CH attack or being a person with CH. I have seen that in various places, but can't say where you might find it (maybe it will also come up from a Google image search).
    1 point
  23. Thanks, Andrew. Would you please give me a recommendation on the CBD oil to try?
    1 point
  24. yeah i didnt mention oxygen theropy i just figured every one already new about it i use med oxygen alot but because im chronic and was having up to 8 attacks per day i was goin through the bottles like there was no tomorrow and its not covered by my insurance here so it was costing me a fortune.I ended up buying a large oxygen concentrator machine so i never have to worry about it running out or having to get the bottles replaced.
    1 point
  25. the anti-inflammatory vitamin D3 regimen has worked very well for people with chronic and episodic CH (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and "busting" (using psychedelics), when done properly (not with microdoses and generally five days apart, not three or four), has also benefitted many to prevent cycles/attacks and provide an end to episodic cycles or remission from chronic attacks. you don't mention oxygen in your posts, but it is a very effective abortive for chronic and episodic folks, and so is DMT. None of these things (D3, oxygen, or DMT) blocks busting, and there are other CH meds that don't block busting. again -- may you never need any of this information, and may your discovery benefit many others.
    1 point
  26. If the CBD ever lets you down and you start having attacks again, please check back in here. Some of what you say above is a little bit inaccurate, and people here will be able to give you some guidance about highly effective preventives and abortives that you can use while dosing with psychedelics (or on their own). But for now, may your CH-free life continue forever!!
    1 point
  27. I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.
    1 point
  28. when the blood vessels become inflammed and dialated they put pressure on the trigeminal nerve which then sends pain signals through the nerves in your face so pure medical oxygen reduces the inflamed blood vessels and return them back to normal and once they are no longer pressing on the trigeminal nerve the pain goes away quiet quickly.since i have started using cbd oil which is a powerful inflamitory i dont even use oxygen theropy any more they have compltely stopped
    1 point
  29. My heart breaks for you @devonrex. The most I’ve had in a day was 5, and that redefined my concept of Hell. You’ve gotta try everything. What I enjoyed about the mushroom process was that I controlled everything, end to end. I knew what I was taking because I grew it. Here in the UK, they just passed an assisted dying law. They have to work out the finer details, but I think it’s a good decision. I’m certainly not leaving things to someone else or even Fate if I can help it. I hope 2025 is a better year for you. Mox
    1 point
  30. Oxygen should not be hard to get because you're episodic. A doctor should prescribe it, and (if you're in the US) Medicare would most likely cover the cost. And it is the job of oxygen suppliers to do the part you mention -- bringing it up to your apartment. But even if you go with welding oxygen, unless you have to walk up a lot of steps to get to your apartment, it ain't that hard to lug some decent-sized O2 cylinders once in a while. There are rollers you can put them on, for example, or some decent sized ones fit in a rolling suitcase. If you are using the injectable triptans, be sure to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/
    1 point
  31. Carnivore Diet as a Preventative Treatment By way of introduction, I am a 51-year-old male who had been suffering from chronic cluster headaches for approximately 15 years. The severe cluster headaches occurred on average 2- 3 times a week. Throughout this time, I have been through various Cluster Headache treatments: - Neurologist prescribed treatments: Preventative Treatments: a range of off-label treatments including high dosage regimes of verapamil, lithium and eventually long-term prednisone. Abortive Treatments: Oxygen and triptans. - Psylocibin: Preventative: 5mg psilocybin sessions followed by micro-dosing. As the psylocibin started to become less effective, I eventually reverted to a long-term prednisone treatment. My wife had been researching cluster headaches and suggested that I try a diet that eliminated inflammation producing foods. This regime consisted of at least 3 months of following a carnivore diet. Once healed, maintenance included gradually introducing other foods (grains, pulses, vegetables etc.) being careful to omit all sugars and wheat- no bread no pasta. It should be noted that I had discontinued the long-term prednisone treatment due to the side-effects that I had developed (osteopenia and other long-term prednisone related side-effects). The results of the new diet regime were dramatic! Since the commencement of the 3- month carnivore diet in 2023 and the continued omission of foods containing wheat and sugar, I have only had an occasional mild onset of a cluster headache (once every two to three months), which I could easily abort with paracetamol and/ or oxygen therapy. Based on my experience with my diet regime, I would like to suggest the short-term carnivore diet to allow for the elimination of inflammation. Once the elimination, one could begin to introduce other foods slowly (and monitor how the body reacts to it) and continue with the omission of wheat and sugar from the diet. Please feel free to contact me should you have any questions on the diet regime as I have my own experience of how devasting cluster headaches could be and would be more than willing to assist where I can.
    1 point
  32. Thank you. I found that the carnivore diet almost created a "clean-slate" where the was no inflammatory food substances. Once the elimination was complete, the keto diet allowed the introduction of further food types, with a close-eye on any foods that may cause the cluster headaches to return.
    1 point
  33. During my wifes pregnancy, she began having hives constantly after eating anything. She had never really had allergies before, but it turns out when you get pregnant, your DNA is altered. So we got the allergy test done and it came back that she was allergic to like 600 things. So I asked Google what do (I picked 3 things off that list) have in common chemically. Quercetin. So then I looked up Quercetin to see what all that's in. It's in like 600 things. But the doctors are like naw that can't be it, as if the facts aren't staring them in the face. So to answer your question, #@%& yeah you can have a reaction to Quercetin, and i feel for you. Also, pineapple has quercetin in it.
    1 point
  34. this last week or so i've been calling my dogs to come and lay beside me while I grit my teeth and try and endure the attacks in silence. My poor catahoula gets alien snatched and snuggled while I brace for life when i feel a shadow come on. Sometimes i can "hide" the attack from my family because its under kip 6/7 and I have a relatively high pain tolerance. I still get restless kicking about,rocking back and forth to some degree, groaning and so on though. Our catahoula was an abused breeder rescue who is incredibly timid around men in general so shes usually really solitary expressing porch dog behaviour . She's always very timid but she's showed up at my side laying on me 3x now unsolicited within 10 minutes of an attack kicking off. This most recent one hit me so fast that I thought I was going to start puking. Our chihuahua seems to go into a licking frenzy on me up to half an hour or more before an attack unsolicited and has done this a handful of times this week almost consistently before an attack. Both of which have done their individual behaviours in tandem at least once and that was a MASSIVE attack that left me pretty much incapable of speaking because it was so intense. I've considered scent training one of them to help give myself an early alert but i'm wondering if that's even really necessary at this point. Neither of these incidents has been followed by a lack of attack within 30 minutes. Both have been 100% accurate So far. They don't always catch it but the ones they have "acted strangely" about have been considerable, just like the ones I called them to me about I'd like to train our Chihuahua because he would be much easier to take around with me but he needs behaviour training where sas our catahoula is exceptionally docile and well behaved but is terrified of vehicles and incredibly distracted by dogs. I don't have much in terms of remediation at the moment besides D and M which I Can't do publicly but early alert gives me at least a few moments to brace for impact. Does anyone here have pets or service animals that give off warnings, show compassion behaviours, or legitimately trained for alert? In my jurisdiction i'm "service dogs in training" "SDIT" are afforded all legal rights and protections as fully trained Sd's and from my extensive research documentation is unecessary and often times seen as compounding misunderstandings about responsible and legitimate sd/its and handlers. If I could have advanced notice on the migraines and clusters on the go in my day to day that would be huge for me especially as these attacks are becoming more violent and frequent. Christmas day our Chihuahua started frantically trying to lick me while I was driving right before we got to my family members house about 10 minutes later a hellacious attack hit me. If I were totally alone with him that would have provoked me to pull over to begin with. At the time my wife and I just thought he was acting out about going for s ride but in hindsight it was an immediate and abrupt change in his behaviour from calm and hanging out to frantically attempting to get my attention. i'm beginning to see a pattern with both dogs.
    1 point
  35. Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner. This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it.
    1 point
  36. I can't just reply to questions and be done with it (so you can skip my reply if you wish). I work in psychiatric ward and get sometimes called to help when there are patients who are suicidal and have CH. Very, very often when CH is managed to get under control, the suicide plans vanish and again, very, very often never return. But there are people who have more complex problems and conditions and need help beyond getting CH under control. Then you need to keep reaching for help - relentlessly as long as you need, or better yet - find a support person who helps you fight. And it's incredibly tough when the things that work for others do not work for you - these people would need a community of their own. People with torturous chronic pain - whatever the diagnosis or no diagnosis at all, who have not yet found help and those who have found something that helps mixed in one group. I hope you keep reaching out and find help.
    1 point
  37. I really just need to vent tonight Like a cruel joke i relapsed after 10 totally symptom free days. All the way from k0 to k7 in a matter of minutes mid interview. The 5 day rule failed me. Maybe my dose wasn't as dialed in as I thought maybe I need to dose sooner either way i relapsed into another cluster. I'm really sad. I was doing so well, so full of hope. Today was a series of insane issues on so many fronts that I can't even list them all. It was a miserable day. I think the cruelty of this disorder isn't in the intensity of how incomprehensibly painful it can get but just how broad the contrast of it all is.... Without any warning mid sentence it was like the devil himself was punching me in the face to collect my lunch money. . I guess I just needed to bitch and moan. Vent. Scream into the void. I just need a damn job... This last interviewer today told me "you're not 16 anymore, this part time job isn't going to support your family. I have half a mind to tell them not to hire you because I feel that this wouldn't be in your best interest to let you have the position. I would recommend you apply for the distribution centers" and honestly it pissed me off .how is that NOT discrimination? What does my age have to do with anything ? Why can an interviewer tell me what I should and should not be allowed to take pay wise or Take the only opportunity for gainful employment i've had in months and tell me i'm better off essentially unemployed and still searching while they possibly hire someone younger with less financial needs or tell me that I SHOULD be able to get better pay so I shouldn't be allowed to have lesser pay... At this point i'm getting desperate and it feels like the only way i'm going to stay a float or get ahead is doing something sketchy like mowing lawns off the books or something stupid and I really don't need the headache. At this point i've stopped openly throwing a fit. It doesn't do me any good. If anything I just end up hurting myself and damaging things. Tonight I tried distracting myself working on my computer and possibly caused even more damage in the process which is really saddening because I was really happy with how it was Today I locked myself in a dark room and just cried because I don't see any end in sight. Not to the pain, not to my balance and hearing issues, and not to my lack of employment. I feel worthless, useless, and broken beyond repair. I've tried playing good baptist but at this point i'm even questioning my already waivering faith. I'm sure SOMETHING good will come but at what cost and when? The house we're in is literally falling apart, we can't keep up with the bills, can barely keep food in the fridge. It's all a mess... And now I have to be reminded that Equal Opportunity is a true crock of shit and I feel foolish for even trying anymore.
    0 points
×
×
  • Create New...