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Showing content with the highest reputation since 02/21/2019 in all areas

  1. 2 points


    Hi fellow cluster heads, i recieved a free gammacore through a free trial program my MD is in. The study’s show it doesn’t work that well for CCH and I would like to give it away. If some one out there gets good results but can’t afford one let me know. The divice has not been activated yet and is good for one month once it’s activated. I’ve been getting txt messages from them about programs they have now for people who’s insurance won’t cover it or you can’t afford it. You may want to look into it again if in the past that was a barrier to use. If no one with experience with them is interested I will open it up to anyone that wants to try one. It’s the newer second generation one. Not the original bulky one. It comes in original box with directions. It also works for migraines as well. So if I open it up to everyone all will be considered and I’ll have to figure out a raffle or essay thingy. Looking forward to hearing from y’all! Brian
  2. 2 points
    I will continue to chose my path of spirituality through God's gift of psilocybin.
  3. 2 points

    Hi! (First Post)

    Yes. Mine started out mild too. In 1972. They lasted 20 minutes and were not agony. Pain? Yes. Agony? Nope. Well, fast forward and they morphed. Ch is really good at that. I was days and went nocturnal. I was CCH and went to ECH. And into hell. I had a very nice break for 10 years. And was shocked when they returned in a different fashion. So, my advice is to see a Neuro. and get a relationship going. You will benefit if he/she is worth their salt. Anyone keeping you on Pred for extended periods is not paying attention. Sorry. I love Pred too!!!! I save my Dose Packs for special situations - travel, etc. That way I have a plan for emergencies and no side affects. And I stick to 4 a year. Some people get the pain mainly in the eye, others get the hot poker thru the temple. Not out of the ordinary. Don't let the dentist pull your teeth! The nerve to your entire face on that side covers a whole 1/4 of your head. So, that means your teeth and sinuses are afflicted with pain. But you don't need surgery. Many of us have had it to no avail. Many have lost teeth with no reduction in pain. Your lower level of symptoms and pain is not an indication it is not CH. Just that it is new CH I suppose you could call it. Some get slammed hard from the first and others take a different route. Who knows why. ATB
  4. 2 points
    big j

    Hi! (First Post)

    My advice would be to get your vitamin d checked. Mine was slightly low for normal 22 and since I started taking it and brought it up into the 70s I've been almost pain free. It's worked better than the drugs I've found that worked and no side effects. As many on here will tell you everyone is different so it's hard to have a %100 diagnosis. Since your pain and frequency seem low I'd advise to avoid imitrex, it made my situation worse imo. Most on here will tell you to start with o2 but I know it can be a pain to try and use on a job site. If there's torches on site try em, Ive just set up a garbage bag to fill with my torches.
  5. 1 point

    Psilocybin grows new brain cells

    Effects of Psilocybin on neurogenesis, a talk by Zeno Sanchez-Ramos. A little dry but good info. One of the more interesting things found in this study was that Psilocybin was growing new brain cells, but not from one dose. Not until they gave 3 doses--One dose a week for 3 weeks did they find this as a result. This may point to better clusterbusting relief if taken on this schedule (or maybe not...) Even if it did not up the effectiveness of the mushrooms, I would bet money that it WOULD help fight off depression. I found this extra interesting because I take my mushrooms once a week, for three weeks, then take a week or two off. http://www.youtube.com/watch?v=QRNSEG1DY2s&feature=youtube_gdata_player -Ricardo
  6. 1 point


    I found a person with ECH who has an old device that has gotten relief with it. The give away is over.
  7. 1 point

    Eye dominance & cluster headaches?

    I'm left handed. I get clusters on the left side only. It has always hurt real bad with the eye feeling like it's going to pop out. I have noticed that my left eye prescription is changing faster than the right. I have suffered from clusters for 21 years and I'm 47.
  8. 1 point

    2019 Patient Conference

    Hi everyone. I just wanted to give a heads up that registration is set to open this week. Please keep an eye out for an email and an announcement here.
  9. 1 point

    Hi! (First Post)

    Vitamin D is a good thing to check, also your testosterone levels. Low T can be a cause of headaches (I believe). From what you describe, it doesn't sound like a typical, by the book, cluster headache. But, I'd recommend seeing a neurologist for a formal diagnosis. A 'by the book' cluster headache will last between 1-3 hours, be 1 sided, usually be in or behind the eye, but not always, and the pain is beyond belief. It's not a case of stopping work for a bit to deal with it, but rather stopping work and slamming your head into the wall for an hour, or rolling on the ground holding your head, pacing across the room crying out in agony, level of pain. I've described it as having a gang of men break into your house, pin you down and saw off a leg without anaesthetic while using a dull, rusty saw - every day. It is that level of pain. There are other types of headaches that happen regularly as well as clusters, so worth getting checked out by a professional who understands headaches. MG
  10. 1 point

    Benadryl to bust imitrex rebound

    Hey Big J, Benadryl works best to block the histamin H1 receptor when it's vacant. If histamine molecules have already occupied available H1 receptors, usually characterized by a CH... the Diphenhydramine will be useless. Moreover, the histamine triggers the expression of CGRP and SP, both of which are responsible for neurogenic inflammation and the pain we know as CH. The only way around this is to take 25 mg Benadryl (Diphenhydramine HCL) every 4 hours during the day and hopefully during a CH pain free period. This allows the Diphenhydramine to pass through the blood brain barrier to block vacant histamine H1 receptors before the histamine arrives. You need to make a Redneck oxygen reservoir bag our of a clean kitchen trash bag, plastic Coke bottle with cap and the bottom cut off, some electrician's tape and some duck tape. Use the search tool at the top of this page and key in Redneck Reservoir to find the "How To" DIY instructions... Take care and please keep us posted. V/R, Batch
  11. 1 point

    CCH surgery

    I have not had this procedure but did have the trigiminal nerve cut down at the Mayo Clinic back in 1982. I was part of this study; https://www.ncbi.nlm.nih.gov/pubmed/12707445 There was 17 in the study. Lots of problems, they don't do it any longer. Stick with mm. I'm not sorry I had it done , it saved my life . Would not advise anyone have surgery . A true believer in busting.
  12. 1 point

    Big study (Schor and others)

    These are the first published results that I have seen from the big questionnaire-based study that Larry Schor and others carried out, which many people here contributed to. Nothing particularly shocking to us, but very important that it's out in the medical community. Thank you, Larry and others!!!! https://www.docguide.com/effectiveness-oxygen-and-other-acute-treatments-cluster-headache-results-cluster-headache-questionna?tsid=5
  13. 1 point

    Another CH "lookalike" (maybe)

    https://www.docguide.com/sphenopalatine-neuralgia-independent-neuralgia-entity-pooled-analysis-case-series-and-literature-rev?tsid=5 "The clinical characteristics of SN [sphenopalatine neuralgia] might mimic cluster headache with the exception of cluster pattern and treatment response to oxygen. The typical duration of pain episodes in SN was several hours to several days; and in some cases, pain was persistent."
  14. 1 point
    Her work specifically deals with the atlas and axis vertebrae, the area where the spine meets the brain. I had another appointment today and discussed this with her. She said that what she sees in all her patients with cluster headaches is a misalignment in this area 100% of the time. She said I am an average patient as far as my situation and that her success rate with patients finding relief is very high. I said 80% high and she said higher. She said not all patients with a misalignment will present with headaches, some may have vestibular problems, seizures, fibromyalgia, etc. just depends on what nerves and blood supply is being effected and how that is interpreted by the brain. She said most of her patients can recall a specific neck trauma in their past that may have caused a problem, car accident, fall. Some like myself cannot although I did play soccer thru college. I asked her why others refute that this technique works and she gave a multitude of reasons. The one I think is holistic practices are always at a disadvantage to prescription based treatments and also you may have to go to a few doctors before you find one that actually knows their stuff. Luckily I found one that does. Before my first appointment, I had to get very detailed xrays of my head and neck for her to review, then we went over my problem and she explained how she would correct it.
  15. 1 point
    I had suffered with episodic cluster headaches for about 15 years. Once a day, for 2 months out of the year. My major triggers were alcohol, marijuana, and weirdly not eating/getting hungry. Thought I would have to just live with these forever and just be happy I didn’t have them all year. One day when I had just started another cluster period I was fortunate enough to see an ad in a local paper that was for cluster headache treatment. It was an upper cervical chiropractor doctor claiming to be able to help by correcting issues in the upper neck. I jumped at the chance to get relief and went to her website and read some testimonials from other cluster headaches patients and other patients with different problems she also treated. I made an appointment first chance I got. After initial X-rays and consultation, I had my first neck vertebrae adjustment and had immediate improvement. After a few more visits, my headaches were gone. The last 2 years, as soon as the headaches reappear, I make an appointment and get right in for an adjustment. Headaches go away immediately. It is a miracle and I would encourage anyone with any headache problems to search for a qualified upper cervical chiropractor who treats cluster headache patients. Not a regular chiropractor, those didnt help me. It needs to be an upper cervical chiropractor. They are out there and one changed my life.
  16. 1 point
    I strongly disagree. This is the third time this method has helped me avoid a cluster period completely. I’m not a one time story and my cycle start times have not changed. Not saying it can help everyone but if it helps one other person find relief, then it’s worth it to me. I don’t find it a coincidence that I get woken up with an hour long cluster headache 2 nights in a row, go in immediately and get help, then the headaches magically vanish. Upper cervical care is much different than a regular chiropractor.
  17. 1 point

    strange changes to my clusters

    MoxieGirls' rule of thumb: No two cluster sufferers are the same, and as soon as you figure out your clusters, they change. Migraines suck too. Just saying.
  18. 1 point

    Autoimmune clusters

    Someone comes here, says they haven't been to a doctor, might not even have typical clusters, and your first advice is to take ketamine and cannabis because you theorize it might work? I use ketamine at work for animal euthanasia and surgeries, and have seen vet techs get hooked on the stuff, stealing it from the lab, lying about how much they use. I'll catch them passed out limp in the break room from time to time. I believe anything can have a medical use, but I'm very much into harm reduction, not anti drug at all. If OP came here and said "I have been to a doc, prescribed this, diagnosed with this, none of it works, please help." My reaction would be totally different. Trust me, I hate the establishment more than anyone. And I'm not angry at all, I think you have provided valuable insight and accurate info. My conservatism actually comes from experience, not propaganda. I have seen all manner of substance abuse ruin lives, hallucinogens and cannabis included. I have also seen them save lives.
  19. 1 point

    Neck muscle tension connection?

    Before I knew I had CH (when I thought I just had a curse), I used massage extensively for treatment. The massage therapist I saw at the time was pretty physiologically knowledgeable and said there's a muscle group that runs from behind your shoulder blade, up the side of your neck and across most of your face on the corresponding side and mine was tight as a drum on my right (cluster) side . He told me to lay on my back and roll a lacrosse or tennis ball under my back until it hit just between my spine and shoulder blade and lay the muscle on it then give a slow count of 30. It has helped me during clusters from time to time. This cycle, I was reading another post on these boards that identified a muscle between your jaw and ear that is taut during an attack and to push on this muscle until it releases. I have done this a couple times for attacks and shadows; it has helped quite a bit. I have even ended an attack early using this technique. Since my busts have shown success, I've continued to use it for shadows.
  20. 1 point
    J, I totally understand your predicament. You need to be head-zup teaching class and the CH beast makes that difficult to impossible depending how ugly it jumps. It's your call on what to take to get through classes. Do what you need to do... Having the CH return at progressively higher severity attacks as you taper off the prednisone tells us you're still fighting a significant inflammation. Adding a 1000 mg tablet of vitamin C along with the Benadryl (Diphenhydramine HCL) every 4 hours has worked nicely for CHers in similar situations... A 1000 mg/day of Turmeric (Curcumin) can also be helpful in keeping the CH beast in check as it's a natural anti-inflammatory agent as well. I would also bump the vitamin D3 dose to 40,000 IU/day for 5 days then drop back to 20,000 IU/day as a maintenance dose to see what happens. Doing this will likely elevate serum 25(OH)D by another 20 ng/mL. Again, that's no biggie... I've maintained my serum 25(OH)D at 140 ±50 ng/mL to stay CH pain free for the last few years and that includes jumping on the Benadryl (Diphenhydramine HC) for a week to 10 days during allergic reactions at least twice a year since spring of 2015. Make sure you're drinking 2.5 liters of water a day... In all the hassle and confusion of a CH flurry, with the CH beast tapping out a tarantella on your eye several times a day... the need to drink enough water falls in a crack... I keep my water in an empty 2.63 liter NON-GMO Simply Orange plastic bottle and drain it completely every 24 hours. If you do all this and the CH beast continues to jump ugly, we need to take a look at diet. No sugars of any kind and no artificial sweeteners including Stevia. No gluten, peanuts, corn, soy, pasta or any food from a can or jar unless it says "NON-GMO" and "No Sugar Added." I try to cook and eat whole foods from the "Organic" produce section along with free range/organic beef, lamb, chicken and eggs. I've a freezer full of wild caught, fresh frozen vacuum sealed salmon, cod and halibut fillets from my Alaska fishing trips. The NON-GMO food types are gaining in popularity. It's only been in the last year or two that governments in Europe have contemplated a ban on foods containing Glyphosate... the organophosphate herbicide and dessicant made by Monsanto under the label "Roundup". In October the EU banned Monsanto lobbyists from entering the European parliament during deliberations on a ban of all Glyphosate products. What Monsanto has done is diddle (genetically modify) the genes of selected crops to make them resistant to Glyphosate, giving them the title "Roundup Ready." This allows these crops to be sprayed with Roudup to kill the weeds and not the genetically modified crops. In theory, this sounds like a good idea... However, given the basic laws of diffusion, these plants take up the Glyphosate so it is present in all Monsanto GMO crops including: corn, wheat, oats, barley, beans, legumes, fruits some nuts and the list goes on... Monsanto has claimed these genetic modifications only affect plants and not mammalian genomes including the human genome. The Glyphosates in these crops pass through the body unchanged so do not affect mammalian physiological functions. While this is true, it fails to account for the human microbiome... large colonies of friendly (symbiotic) bacteria and biota living in our GI tracts. They are members of the plant kingdom... Accordingly, the microbiome is affected by Glyphosate... and it kills off these friendly colonies of bacteria and biota... As roughly 70% of the human immune system is centered around our GI tract and microbiome, Glyphosate can and will damage or destroy our immune system with continued exposure. Lab tests conducted by Anresco were done on 29 foods commonly found on grocery store shelves. According to the report, glyphosate residues were found in: General Mills' Cheerios at 1,125.3 parts per billion (ppb) Kashi soft-baked oatmeal dark chocolate cookies at 275.57 ppb Ritz Crackers at 270.24 ppb (Uh Oh). While parts per billion (ppb) might sound like a very minute quantity... researchers have found Roundup can cause liver and kidney damage in rats at only 0.05 ppb, and additional studies have found that levels as low as 10 ppb can have toxic effects on the livers of fish. The other, more insidious property of organophosphates like Glyphosate is they do not break down and will lay around for years until taken up by another GMO plant. That means the GMO Roundup ready crops used as feed will result in Glyphosate being concentrated in the animals eating that feed... butter, eggs, cheese, farmed (shrimp, prawns, tilapia, catfish, cod, and salmon), chicken, beef, lamb, pork, bacon and sausage... Oh No... Why all this discussion on Glyphosate... Simple, cluster headache has many triggers... No sense in adding more when they can be avoided for the most part. Sooo... I stick with wild caught fish and shrimp, free range critters, and NON-GMO organic crops. I even buy NON-GMO highfructos-free ketchup Take care and please keep us posted. V/R, Batch
  21. 1 point

    Low Histamine diet worked for me!

    I just passed through my third cluster without a headache by going on a low histamine diet during my regular cycle! Absolutely amazing. I’ve had regular spring/fall clusters for the past 14 years (with occasional smaller clusters in between). About 1 ½ years ago a naturopath suggested that I try a low histamine diet. I went on it about a month before I usually enter my spring cluster and stayed on it for the duration. Not one headache. I could definitely sense that things were going on and I had a few shadows but it never tipped over the edge. After that I went back to a normal diet until my normal fall cluster. Then I did the same thing with the same results. This spring I didn’t start the diet until I felt that I was about to enter a cluster and that worked OK. I was a little less strict this spring and did have to bust out the O2 once but I probably would have been OK without it. My level of understanding of the physiology of it isn’t that great but this is how I think about it. Our body makes histamines in response to allergens (and for other reasons). Foods contain them as well. If we avoid foods that contain lots of it we can lower our overall histamine levels. Then, when we’re in a cluster and our hypothalamus misfires and causes histamines to kick out and dilate our blood vessels and cause us horrendous pain, there’s simply not enough histamines to do the normal damage. I’m sure those of you more knowledgeable will tear that up. The overall histamine level is also why the traditional food-journal never helped me. There’s not one trigger. The orange you ate before you got a headache wasn’t necessarily the cause. The ham and Swiss you ate earlier was just as guilty. The food list is pretty long, and there are lots of variations of it out there. It’s a really annoying diet but totally worth it. Interestingly, I went to see the naturopath only after I had inadvertently put myself on a high-histamine diet. Typically my spring/fall clusters last 1-2 months but I was in one that had been going on for 4+ months and was worse than any I’d ever had. With my tools (O2, verapamil and imitrex) no longer being enough and me having a hard time getting an appointment with my neurologist I went to see a naturopath who I knew (who wasn’t familiar with cluster headaches but did some research and came up with an amazing shot in the dark). My inadvertent high-histamine diet was an anti-inflamatory, low-pH diet that I was trying. It turns out that my daily apple-cider vinegar tonics and pineapple/spinach smoothies were just about the worst things I could have done.
  22. 1 point
    I've been following this concept for a while. My personal opinion, for what it is worth, Is that there is merit. I have had personal positive results. Now cetainly my positive observation are clouded by many confounding factors. I currently use DALT every 5-7 days, toss in some low dose mm sporadically when I have 6 hours to spare, D3, verapamil and a beta blocker. The verapamil and beta blocker are ostensibly for hypertension but I chose them for my blood pressure hoping they would do double duty. At night I take 75-100 mg of benadryl which is a relatively new add. To my delight it seems to knock out any lingering shadows and I sleep better. Never was a dreamer but I've been having vivid dreams. This I attribute to the DALT but its only a guess. Following a diet would be a better physiologic test but my lifestyle and variable schedule would make this darn near impossible. To be a bit analytic about this I should start withdrawing some treatments but I am so happy to have relative control of the beast its not worth it. Same philosophy that makes all studies hard. Bottom line it is great folks are trying this and continue to report on their experience. Information is power and helps fill in the blanks while helping others. This forum is such a great place!
  23. 1 point
    I disagree. In my experience triptans will most definitely give me rebounds IF I take it numerous days in a row, but there have been plenty of times (and after close to 20 years of using triptans I can say PLENTY of times pretty confidently) that I have had a cluster, taken sumatriptan and did not have a rebound headache or increase in the severity of attacks. And yes, more than once I thought the same thing, stopped Sumatriptan for 6 months at a time and found no difference. Maybe this reaction is happening with you Denny, but I suspect it might be an individual sensitivity to triptans. Again, I disagree. I fully believe that taking opiates too many days in a row will give you rebounds, but I have had too many times where I ended up in the ER and the only thing that worked was opiates. The next day I did not get hit, and my attacks in general did not actually get worse in any way. I think this is important info because I think as a last ditch effort the opiates are very useful. If you end up in the ER, you are out of options and they offer you a shot of morphine should you turn it down because of the possibility of a rebound headache the next day? In my experience and opinion, as long as you have not been taking opiates much you will do yourself very little harm with an emergency shot of opiates. I would say that somewhere around 95% of the time that I take sumatriptan it gets rid of the cluster and does not in any way "rock me so bad" when it wears off. Sometimes the triptan does not work, I consider this to be a bad cluster and not sumatriptan rocking me. Triptans are not really released from any sort of receptor, they do trigger certain receptors to do certain things, but they are not actually released. The k receptor is a hallucinogenic opiate receptor and I have never heard of it being related to sumatripan or clusters. Do you have any info showing otherwise? In my experience this is not always true. I have taken sumatriptan, then less than 48 hours busted with psilocybin and it worked. I have done this more times than I can count. When I get to the point where I am taking sumatriptan for more than 2 or 3 days straight it seems to interfere with my bust and I need to make sure I get a good break from it. In my opinion, none of these statements are very helpful. You have your situation and other people have theirs. You can not guarantee any sort of reaction to anyone about anything. Telling people "stop triptans now" because they haven't worked well for you seems to assume that you know other peoples situation enough that you can tell them what meds they should just "Stop". That seems kinda arrogant to me. You can not say in any sort of surety that "triptans will set you up for disaster and a continuous headache cycle". Maybe you can say that about yourself, but there are a LOT of people that do not have this effect at all. It has been pointed out over and over on this site that we should all take as little sumatriptan as possible. That IS helpful. As far as "You are fooling yourself if you think they are helping" Again not very helpful and most definitely arrogant. You don't usually convince people of the merit of your ideas by calling them foolish. My bet is that if you do some serious research you are going to find very different ideas than the ones you have come up with. Maybe I am missing something though. I responded to that post earlier with a whole bunch of questions because I wasn't understanding what you were saying and I have to admit, after you answered me I was even more confused. Between the k receptors that are somehow receptors and molecules, the clusters being caused by clusters, the strange oxygen info, I could go on and on---it just doesn't seem to have much basis on any sort of factual evidence. The idea alone of K being a both a molecule and a receptor makes very little sense from what we know of biology, chemistry and science. Molecules bind to receptors because the molecule fits into the receptor just like a key in a lock. From everything we know, If the molecule and the receptor were the same it just wouldn't work--that would be like trying to fit a lock in a lock, instead of a key in a lock. I would research more about the receptors that get triggered by sumatripan and the receptors that are triggered by hallucinogens and look for correlations. -Ricardo
  24. 1 point
    I find this to be most interesting... "Ability to dissociate unpleasant emotional responses from stimuli that trigger those responses is facilitated by psilocybin" "This may explain, in part, the utility of psilocybin in the treatment of post-traumatic stress disorder and other conditions in which environmental cues trigger a need (eg drug-seeking) This seems spot on to me from my own personal experiences. I also do "chronic" dosing (once a week) to achieve the desired results. I have had a recent breakthrough in this area... will publish results in a new thread after I gather a little more data.
  25. 1 point

    Psilocybin grows new brain cells

    You are one intuitive SOB. Â [smiley=thumbup.gif]