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  1. 2 points
    Hey Spiny and Pebbles, Thanks for the plug with kind words about the D3 Regimen efficacy. After reading the article on galcanezumab-gnlm (Emgality) results when treating episodic CHers... all I can say is bless my long gray whiskers, the author of this article and the folks at Lilly who paid for this RCT must have been thinking pure thoughts. Here's my analysis of the results. BTW, I've read the results from all the anti-CGRP monoclonal antibody RCTs for episodic migraine and episodic cluster headache... The published results of these RCTs tend to sugar coat the absolute efficacy of these mAbs with clever wording and relatively new measures of effectiveness like "Patient Global Impression of Improvement scale." In short, the results of these RCTs are at best fair with respect to prophylactic effect (headache prevention)... but not great... as a rating of great would be a complete cessation of headache symptoms... To get the absolute efficacy of a cluster or migraine prophylactic intervention in an RCT you subtract the mean measure of improvement from the Placebo Control Group from the mean measure of improvement from Test Group taking in this case taking Emgality. In this RCT, the primary measurable endpoint was the reduction in CH frequency as indicated in the following quotes from the article/RCT... "In this study there were 106 participants with episodic cluster headache who had an average of 17.5 cluster headache attacks per week at baseline." Note: There's no discussion of how these 106 episodic CHers were divided between the Placebo Control arm and the Treatment arm... The article when on to say "Across weeks 1 to 3 of the 2-month study period, the group treated with 300-mg galcanezumab reported a statistically significant difference in the reduction of weekly cluster headache attacks compared to placebo (-8.7 reduction for galcanezumab vs. -5.2 reduction for placebo; P = .036). Note: There's no mention of efficacy at the end of the 2-month study period... If you do the math, the placebo control arm of this RCT experienced decrease in average weekly CH from 17.5/week down to 12.3 CH/week (17.5 CH/week minus 5.2 CH/week). That also works out to 5.2/17.6 = 0.297 or a 29.7% reduction in CH weekly frequency Doing the same math on the treatment arm, Episodic CHers receiving 300-mg galcanezumab had a reduction in average weekly CH from 17.5 CH/week down to an average of 8.8 CH/week... and that works out to 8.7/17.5 = 0.497 or a 49.7% reduction in average CH/week. Now lets look at the absolute efficacy by subtracting 29.7% for the placebo control arm from 49.7% for the Emgality treatment arm and to get an absolute average reduction in weekly CH of 20%. By the way you get the same 20% by subtracting 5.2 from 8.7 you get 3.5 and dividing by 17.5. A better measure of efficacy is the number needed to treat (NNT) to achieve the stated improvement... in this case 3.5 fewer (20%) CH/week in one CHer. To get the NNT we divide 1 by the % improvement or 1/0.20 and we get 5. That means neurologists need to treat 5 episodic CHers to get on CHer to respond to this regimen... for an estimated $550 per treatment plus the neurology consult and labor of administering the Emgality injection and the bill per treatment comes to ~$750... assuming three months per treatment for an episodic CH cycle... Now let's look at the efficacy of the anti-inflammatory regimen. Data from the online survey of 293 CHers taking this regimen since the survey started in Jan of 2011. This data indicates 80% of CHers who start this regimen experience an average 80% reduction in the frequency of their CH in the first 30 days and 50% of the CHers who start this regimen experience a complete and lasting cessation of of CH symptoms in the first 30 days These are combined figures for both episodic and chronic CHers... There was no placebo control arm in this study, but we can use figures provided by a study run by a team of neurologists expert in treating CHers. They found the highest reported placebo response in CH of 14% to 43%. The lowest value was reported using the strict endpoint; cessation of headache attacks. Using these figures to come up with the absolute efficacy we subtract 43% from 80% for a 37% reduction in CH frequency for 80% of CHers, we multiply 0.37 times the 0.8 we get 0.296. Dividing that into 1 we get 3.37 so round up to the next whole person for an NNT of 4 CHer taking this regimen to get one of them to have a favorable response. Using the same math to get the absolute efficacy for a complete cessation of CH we subtract 14% from 50% for 36% or 0.36 and dividing that into one to get the NNT we get 2.77. Rounding up to the next whole CHer we have an NNT of 3 CHers treated with the anti-inflammatory regimen to get one CH to experience a CH pain free response. Using the same 3-month treatment period as the Emgality RCT, at 55 cents a day, the cost of this regimen for 3 months is $49.50. Accordingly comparing efficacy of Emgality with an NNT of 5 for a 20% reduction in average weekly CH frequency for a cost $750 with the anti-inflammatory regimen at an NNT of 4 for one CHer to experience an 37% reduction in CH in average weekly frequency at a cost of $49.50 and an NNT of 3 to get one CHer a pain free response for $49.50... I think the nod goes to the anti-inflammatory regimen based on bang for the buck... BTW this doesn't count the Emgality adverse side effects... Vitamin D3 has essentially none... Take care, V/R, Batch
  2. 1 point
    MoxieGirl

    Doctor vs Patient

    This popped up on my Facebook feed today, and I thought it apt. MG
  3. 1 point
    Feel free to share this image on anywhere in the social media: http://tonyonly.pp.fi/ch/shy_mainos_englanti.jpg http://tonyonly.pp.fi/ch/shy_mainos_englanti_rc.jpg with round corners Image can also be linked from Facebook source https://www.facebook.com/Horton-Association-Finland-268218244071529/ You can also participate on our virtual Facebook event https://www.facebook.com/events/327047598016318/
  4. 1 point
    Ricardo

    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
  5. 1 point
    Hey Dana, The answer is Yuppers! This diet works great to prevent all kinds of migraine and cluster headache... It also gets rid of jiggles in places that shouldn't jiggle and turns people into hard body good lookers. It works great on my 74 year old frame... I lost so much around my middle I had to switch to braces to keep my drawers up. My wife isn't complaining either... Take care and please keep us posted. V/R, Batch
  6. 1 point
    For episodic cluster headache folks there have been promising results with this class of medication. Certainly better than GammaCore. The concern remains long term effects of such an injection and cost. This costs roughly 1200.00 a month and no one is sure if you need to take it year round , in anticipation of a cycle or at the onset. neurologists dont know either but most are suggesting using it year round. If you have access, are willing to deal with unknown consequences and other things don't work it is worth a try. My concern is invariably when a new class of drug is released all sorts of unanticipated effects start to appear within a few years and enthusiasm tapers. In the end it needs to be an individual choice. Remember that MM have a long track record of safety when used properly. Few others things can claim the same. Then again MM are illegal, can be misused, hard to find unless you self provide and difficult to standardize the dose. D3 is another consideration with favorable experience worth considering.
  7. 1 point
    I think that I will stick to the D3 Regimen. It is also directed to CGRP as well and has been proven to help many patients become pain free with vitamins only. Over the counter and good for you stuff. No CH beats a 'reduction' in CH any day of the week. And vitamins are cheap. This biologic will not be. Also I have found that if there is a side effect I likely will have it!! So, for me, no Pharma is best. ATB!
  8. 1 point
    Chronic2017

    Memantine / Namenda??

    I know this is an old thread but figured I'd share in the hopes that it helps someone. I've had CCH since July of 2017, went through the whole routine verapamil, O2 nothing worked well. In Spring 2018 was put on Memantine and it has noticeably helped. Side effects for me are actually positive as it greatly reduced anxiety at work, other than that no side effects. Currently 20mg a day.
  9. 1 point
    JohnCluster, I don't mean to be a downer, but it sounds like your cycle just came back, regardless of diet. I can say diet can make a positive impact to reducing the severity and frequency of attacks. (Staying away from any foods with tyramine in them). If you look at any common trigger list, you'll see the worst triggers are always the highest in tyramine. Tyramine being a trigger for individual attacks, but not a trigger for the core cause of our condition. It's good you had such a long time pain free. Diet can definitely make a positive difference. Our cycles change over time. I've gone 2 years without a single attack, then out of the blue I had 2 cycles in one year. It constantly changes. (as does our brain chemistry). PFW, J
  10. 1 point
    eileenbunny

    2020 Conference

    Hi everyone, Clusterbusters would like your help determining what locations work best for you for conferences. We have a very short, 4 question survey which will take about 2 minutes to complete. We'd really appreciate the feedback. Thanks. https://goo.gl/forms/0zPHwUC2Hll6JR8C3
  11. 1 point
    CHChris

    strange changes to my clusters

    Mark, Freud means that many people here are using psychedelic medicine to treat their cluster headaches. We call it "busting." There are many prescription drugs that interfere with the psychedelic drugs, and they must be avoided when treating with psychedelics. From what I have read, some people respond to lithium. The first line preventative is verapamil, and lithium is a second or third line treatment. Everyone is different, and lithium might work for you. It certainly is not out of left field, and it doesn't surprise me that your neuro wants to go to lithium if verapamil didn't work. However, I have never taken lithium and would leave discussion of that to people who know more about it. Whether you are busting or not, oxygen is your first line abortive. You indicated in your original post that it did not help much. There are some people who don't respond to oxygen, but the vast majority do. And it is a real life saver for a lot of people. There are CH sufferers out there that only use oxygen, no other abortives or preventives. Also, the best practices regarding oxygen have changed over the years. Most of those changes involve an increase in the flow rate. Oxygen should be used for 15 min. at onset of attack at a flow rate of AT LEAST 15LPM (25LPM is preferred) through a non-rebreather mask. If you have not had success with oxygen, and you have not used it with those flow rates or mask, you really should try it again. Many people who thought oxygen didn't work for them ended up finding out it did work, but they were given bad instructions by their doctors. This happened to me, and when I got it right, my whole life changed.
  12. 1 point
    CHfather

    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."
  13. 1 point
    Jimmy, Sadly CH doesn't go away. It can go into remission, but I've not heard of a single person that it went away forever. CH can go into remission for several years at a time on it's own. I myself had a two year remission for no reason at all. Others might take one of the busting substances and get years between CH episodes, due to preventative dosing. I know of two people that had approx 10 year remissions while taking a recreational substance (unknowingly preventative dosing). While others may take the ultimate route out. I've read over and over of doctors telling patients that they'll eventually outgrow their CH. That in most people, it goes away as we get older. That's pretty much been proven as Horse $#%&. People stop going to the doc because their was nothing the doc ever did to help them. That's why the doctors think it goes away.. IT does't go away, the patients do. (Sorry don't mean to be a downer. There's only a handful of doctors that I like Most others are useless or worse, counter productive to helping those of us with CH. The good news is, busting really works and has saved many, many lives (mine included). PFW, J
  14. 1 point
    LennyC

    Aimovig, new CGRP inhibitor

    If I can get my cycle to quit, I'll do whatever out-of-episode prophylaxis is available - I've burned through almost everything else. Over the past 20 years, I've been on Topamax, Depakote, Keppra, Verapamil, Lithium, Lamotrigine, Lacosamide, and Oxcarbazepine. I've done 1 g Depacon Infusions with Solumedrol. I did Botox every 3 months for 1.5 years. I've done occipital and temporal nerve blocks. The beast always returned. I recently has about a 2 year break - on zero drugs - after a MM bust and having a little left over for every 2 month boost x 4 rounds. Which brings us to now - I have excellent insurance, and the Aimovig Ally program will keep my costs down for at least a year - so if I don't see any adverse events from doing the monthly shots, I'll keep doing them until the HAs return, then re-evaluate. If my episode doesn't break from the dex, I'll be busting again. As to the mechanism of action of the CGRP inhibitor - it is supposed to reduce number of hits and intensity. CGRP is a "messenger" type neural chemical, whose message is typically "pain". It's one of three secondary chemicals that intensify migraine pain, after the activation of the serotonergic receptors at the outset of the headache. It's entirely possible that this mechanism will have more relevance to chronic cluster than episodic, but we'll see. As to the cost - nobody should be paying $7000/year for this or any drug. If you have any sort of commercial insurance, there is co-pay assistance through Amgen. If you don't have insurance, you should apply for full-on patient assistance programs. Paying full cash price for branded drugs can be avoided most of the time. Start with pparx.org if you need help. Lenny
  15. 1 point
    Batch

    New guy

    Hmmm... Lots of good questions so I'll start with the vitamin D3 cofactors... In simple terms, more CHers respond to this regimen if they take all the cofactors than CHers who take only vitamin D3. That some CHers experience a cessation of CH symptoms taking only vitamin D3 likely indicates they're likely eating a diet very rich in the needed vitamin D3 cofactors. To give you an idea of how much dietary sources of magnesium you would need to eat a day in order to satisfy the 400 mg/day requirement for magnesium, you would need to eat: 3/4 pound of dark chocolate or 13 ears of corn or 4 cups of broccoli or 8 cups of peas or 5 cups of Tofu or a cup and a half of Cashews or 13 bananas or 3 cups of black beans... (that could be dangerous) and the list goes on... My SWAG (Sophisticated Wild-Ass Guess) is it will be a lot easier and cheaper to take a 400 mg capsule of magnesium for 11 cents a day than go through the gastrointestinal stress... and expense of eating enough dietary sources of magnesium each day... What we've learned over the last 7 years about this regimen is Magnesium is a must as it is consumed rapidly in the enzymatic process that hydroxylates vitamin D3 to 35(OH)D and on to 1,25(OH)2D3 the genetically active metabolite. Without magnesium supplements, taking 10,000 IU/day or more vitamin D3 will deplete the body's magnesium reserves rapidly (a couple days) and this results in a magnesium - calcium imbalance. As muscle contraction requires calcium and muscle relaxation requires magnesium, a magnesium deficiency will result in muscle cramps. Finger and leg cramps are annoying at best... however when cardiac muscle starts cramping or not relaxing properly, THAT will get your attention with a fluttering feeling in your chest. Solution... take at least 400 mg/day magnesium. The other indication of insufficient magnesium is when CHers take only vitamin D3 they tend to have a favorable response or a pain free response within the first week... They enjoy 2 to 3 days of CH pain free bliss then the CH beast starts jumping ugly again... Why? Vitamin D3 has consumed available magnesium leaving none to support further vitamin D3 hydroxylation. Regarding the rest of the vitamin D3 cofactors... My research and that of experts in vitamin D3 therapy indicate each of the remaining cofactors plays a role in both the D3 pharmacokinetics (What the body does to vitamin D3) and vitamin D3 pharmacodynamics (What vitamin D3 does to the body). As CHers, we need to take this regimen daily as a way of life. Accordingly, I've tried to select the supplements with the best bang for the buck. 10,000 IU/day Vitamin D3 (Nature's Bounty) - 12 cents 400 mg/day magnesium (Nature Made) - 11 cents Kirkland 50+ Mature Multi - 4 cents (The Mature Multi contains nearly all the essential vitamin D3 cofactors. It doesn't have enough magnesium and it doesn't have any vitamin K2), Omega-3 Fish Oil (Nature Made) - 8 cents (The Omega-3 fatty acids act as a potent anti-inflammatory and also help in the absorption of vitamin D3). This brings the total cost per day for the anti-inflammatory regimen essential supplements to 36 cents. Adding the LEF Super K with advanced K2 complex (MK4 % MK7) - 20 cents This brings the total cost of basic anti-inflammatory regimen to 55 cents/day. When to take the anti-inflammatory regimen... For starters, its best to take this regimen with the largest meal of the day. There are two good reasons for doing this. 1. Absorption is highest when these supplements are taken with food high in fats. 2. Taking this regimen with food helps avoid GI tract distress. As an example, taking magnesium on an empty stomach increases the odds of osmotic diarrhea. It's also best to take all of these supplements at the same time each day. Rational... Vitamin D3 absorption starts when it reaches the small intestine and continues as it travels roughly 12 feet until it reaches the large bowel... roughly 12 hours after oral dose where it reaches maximum serum concentration (Cmax). Vitamin D3 (not 25(OH)D3) has a half-life of roughly 18 hours as a fraction of vitamin D3 it is hydroxylated to 25(OH) vitamin D3 each time serum vitamin D3 passes through the liver. What really counts for us as CHers is the hydroxylation of vitamin D3 at the cellular level in neurons and astrocytes within the trigeminal ganglia. Here it's likely hydroxylated at the same rate... and possibly much faster. As this is the site of the genetic expression that down-regulates the expression of CGRP that helps prevent our CH, and the reduction in CH frequency can be as short as 12 hours... hydroxylation to 1,25(OH)2D3 may be even shorter than 12 hours. Getting back to vitamin D3 pharmacokinetics... 10,000 IU of vitamin D3 = 250 mcg = 0.25 mg... That's not much when you consider nearly every cell in the body needs vitamin D3 and we're trying to get as much as possible into neurons and astrocytes within trigeminal ganglia where it's hydroxylated to 1,25(OH)2D3 to support the genetic expression of peptides that down-regulate the expression of CGRP and in doing so, helps prevent our CH... Hope this helps... Take care, V/R, Batch
  16. 1 point
    Ricardo

    Autoimmune clusters

    The reason that I put that out there is not to convince someone to try something on my theory, it is to remind people that there are more options than just the ones listed and that a couple of them a doctor can prescribe for their clusters. One neuro that prescribes both Ketamine and cannabis for migraine and clusters is actually a board member here at Clusterbusters. The experiences that he has reported from his patients do not really match the experiences you have seen in your office. Very little abuse and very few problems with it. Myself, over the past 7 years I have only gone down in frequency and amount. I was taking twice as much but my headaches got better and on my own I decided to cut it in half. I have also talked to numerous migraine and cluster headache sufferers who have also been taking it for years with no problems. And yet people seem hesitant to admit that they have it prescribed. Probably because every time it gets brought up people talk about it like it's some big debauchery thing instead of a legitimate medication for clusters. Before I gave a talk on Ketamine at the CB conference two years ago I thought I was the only one on it. Then I gave my talk and person after person came up to me to whisper that they too had it prescribed and that it was seriously helpful, sometimes lifesaving. But that they were going to tell no one but me. When we talk about substances as a "habit" or as "snorting k" it deligitamizes the very real info and experiences that have shown these things to be medicine. It also gets people to not want to mention the medicine for fear of judgment, making it so accurate info on the subject is hard to find. That's why it irks me when people talk about ketamine abusers and chronic pain patents as if they are the same group of people. Both have issues that they would love to run from but many of the chronic pain patients find ketamine has at least somewhat made their situation better. Not because they are bombed all the time but because the situation that they wanted to run from is now manageable. From what I have seen that's when the last thing people want to do is dissociate, instead they want quite the opposite--to get back to their lives. So far, the experiences of ketamine users for headache disorders have backed this up. To me the way to go is to put out all the options so people can decide for themselves. Truthfully I am not against pharmaceuticals. I think all drugs have their place but that with the huge differences in people and situations we need all options listed as often as possible. As far as substance abuse (especially cannabis) ruining lives... Are you really sure that's what's going on? Most research I have read points to the idea that substance abuse is a symptom of a bigger problem in someone's life, not the actual problem. -Ricardo
  17. 1 point
    Heavenly_Blue

    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.
  18. 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
  19. 1 point
    eagle

    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.
  20. 1 point
    Pixie-elf

    Low Histamine diet worked for me!

    I don't know if this shines a light on anything, and I don't think they've done more research on it, as, it probably wasn't that interesting to them... But Mast Cells play a large part in allergic reactions. (And in life itself...) They release histamine and, oh, about 500 other hormones. And they've found them all up in our faces in the areas we have Cluster Headaches. https://www.ncbi.nlm.nih.gov/pubmed/6733778 And https://www.ncbi.nlm.nih.gov/pubmed/2272091 Benadryl prevents mast cells from releasing histamine. Which is believed to also stop mast cell activation. The problem is, with mast cell disorders at least, generally if you take the same thing over and over again, you become immune.... Mast cells are jerks. I think I tried the low histamine diet for the mast cell problems before we knew it was mast cell disorder and therefore did me no good. (Because I react to what my body has ID'd as the enemy.) But not for CH. I'm guessing it's not my problem as I'm on a shit ton of antihistamines still (No Benadryl, allergic to that) and Anti-IGE therapy with Xolair and no joy.. But maybe once we calm enough mast cells down it'll get better.
  21. 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!
  22. 1 point
    Leonhart

    Low Histamine diet worked for me!

    Histamine Restricted Diet "the list" Allowed/Restricted Foods This diet excludes all: foods with naturally high levels of histamine fermented food artificial food coloring, especially tartrazine Benzoates including food sources of benzoates, benzoic acid and sodium benzoate Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT) Milk and Dairy Foods Allowed Plain milk Ricotta cheese Foods Restricted All prepared dairy products made with restricted ingredients All cheese All yogurt Buttermilk Breads and Cereals Foods Allowed All plain grains Plain oats and oatmeal Plain cream of wheat Puffed rice and wheat Foods Restricted Anise Artificial colors Artificial flavors Bleached flour Cheese Chocolate Cinnamon Cloves Cocoa Margarine Preservatives Restricted fruits Some jams, jellies Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT Commercial pie, pastry, and fillings Baking mixes Dry dessert mixes Vegetables Foods Allowed All pure fresh and frozen vegetables and juices except those listed Foods Restricted Pumpkin Sauerkraut Spinach Tomato and all tomato products All vegetables prepared with restricted ingredients Fruits Foods Allowed Fruits Apple Banana Cantaloupe (rock melon) Figs Grapefruit Grapes Honeydew Kiwi Lemon Lime Mango Pear Rhubarb Watermelon Fruit dishes made with allowed ingredients Foods Restricted Apricot Cherry Cranberry Currant Date Loganberry Nectarine Orange Papaya (pawpaw) Peach Pineapple Prunes Plums Raisins Raspberries Strawberries Fruit dishes, jams, juices made with restricted ingredients Meat, poultry and fish Foods Allowed All pure, freshly cooked meat or poultry Foods Restricted All fish and shellfish All processed meats All leftover cooked meats Eggs Foods Allowed All plain, cooked egg Foods Restricted All prepared with restricted ingredients Raw egg white (as in some eggnog, hollandaise sauce, milkshake) Legumes Foods Allowed All plain legumes except those listed Pure peanut butter Foods Restricted Soy beans Red beans Nuts and seeds Foods allowed All plain nuts and seedsFoods restricted All with restricted ingredients Fats and oils Foods allowed Pure butter Pure vegetable oil Homemade salad dressings with allowed ingredients Lard and meat drippings Homemade gravies Foods restricted All fats and oils with color and/or preservatives Hydrolyzed lecithin Margarine Prepared salad dressings with restricted ingredients Prepared gravies Spices and Herbs Foods allowed All fresh, frozen or dried herbs and spices except those listed Foods restricted Anise Cinnamon Cloves Curry powder Hot paprika Nutmeg Seasoning packets with restricted ingredients Foods labeled “with spices†Sweeteners Foods allowed Sugar Honey Molasses Maple syrup Corn syrup Icing sugar Pure jams, jellies, marmalades, conserves made with allowed ingredients Plain artificial sweeteners Homemade sweets with allowed ingredients Foods restricted Flavored syrups Prepared dessert fillings Prepared icings, frostings Spreads with restricted ingredients Cake decorations Confectionary Commercial candies Miscellaneous Food allowed Baking powder Baking soda Cream of tartar Plain gelatin Homemade relishes with allowed ingredients Foods restricted All chocolate and cocoa Flavored gelatin Mincemeat Prepared relishes and olives Soy sauce Miso Commercial ketchup Gherkin pickles Most commercial salad dressing Beverages Food allowed Plain milk Pure juices of allowed fruits and vegetables Plain and carbonated mineral water Coffee Alcohol: plain vodka, gin, white rum Foods restricted Flavored milks Fruit juices and cocktails made with restricted ingredients All other carbonated drinks All tea All drinks with “flavor†or “spices†Beer Wine Cider All other alcoholic beverages
  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
    Bejeeber

    Psilocybin grows new brain cells

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

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