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ClusterBusters

Leonhart

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  1. 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
  2. Leonhart

    Beyond Medication

    Hi, I am new to this board but I thought it might be worthwhile to discuss whats we can do to manage CH beyond Meds. I have been a CH suffer since I was 6, I am now 34 and have a myriad of social and depressive issues with regards to CH. To begin, CH is rated as one of the most painful medical condition you can get my specialist told me that CH is considered a 10 on the pain scale while medication and management for the pain exists it's not without its side effects and issues. Depression is common, I have been managing this with regular exercise, I was offered "happy" meds by my doctor which I declined and chose a more proven route of combating depression which is 4 times a week at a local gym, exercise has show to be fantastic as counteracting depression as are hobbies/sports. Social Isolation, CH hurts we care about others and dont want to hurt them by seeing us hurt so we hide, Isolation has recently even been recognised as a symptom of CH as its mostly universal, I dont have a good strategy for this, I have recently been spending time in my local library to get used to people again. Employment: Big issue, CH is misunderstood and scorned (well in NZ currently) I have been told to "just take a few panadol" which may as well be tic tacs (a candy here) currently I am being paid to "Blog" write stories for company's websites from home. Right now I am having an issue with Heightened pain tolerance, which is both good and bad.. its good because it hurts less, it's bad because I can accidentally hurt myself and not notice, would love to hear other's issues and what they have found or need help with finding solutions for. We all suffer but we can suffer together.
  3. Leonhart

    New - From NZ

    That right there is important, Migraine suffers (from evidence I have seen) have great difficulty with TV and loud noises during an attack, Distraction during an attack as a coping mechanism is a Key bit of info. I had a feeling that Photosensitivity was caused by CH, not a symptom of /sigh another thing I can attribute to lack of management.
  4. Leonhart

    New - From NZ

    Eur J Paediatr Neurol. 2009 Nov;13(6):524-9. doi: 10.1016/j.ejpn.2008.11.002. Epub 2008 Dec 23. Cluster headache in children--experience from a specialist headache clinic. Majumdar A1, Ahmed MA, Benton S. Author information Abstract BACKGROUND:Cluster headache is a primary headache disorder with the distinct clinical features: unilaterality, extreme pain, cranial autonomic features and periodicity. The prevalence of the disorder is 0.1% in adults and with a male predominance. The age of onset is usually in the second and third decade of life but the onset in the first decade is recognised. We describe our experience of cluster headache in children and review the literature. We have attempted to define the clinical features of cluster headache in children as compared to adults, the role of clinical investigations, reliability of clinical diagnosis, effective treatment and management options. METHODS:A retrospective casenotes review was conducted on all children with suspected cluster headache seen in our centre from 2000 to 2005. Case ascertainment was conducted using International Headache Society guidelines, and by telephone interviews with the parents. RESULTS:Eleven children were identified, (seven male and four female). The median age of onset was 8.5 years (range 2-14). The median age at diagnosis was 11.5 years (range 7-17). Eight children had episodic and 3 children had chronic cluster headaches. The average attack duration was 72 min. The commonest reported bout frequency was one per day. Several children had circadian and circumannual periodicity and most displayed the other features of the disorder, such as agitated movement and cranial autonomic activation. Oxygen, methysergide, verapamil, zolmitriptan and dihydroergotamine were the drugs which were effective in terminating the headache. Paracetamol, ibuprofen and paracetamol/codeine combinations were not. CONCLUSION:We describe our experience with cluster headache in eleven children who all presented before the age of 16. Source : http://www.ncbi.nlm.nih.gov/pubmed/19109043
  5. Leonhart

    New - From NZ

    it does contain alcohol (2%) as it is an adaption to a period recipe, but theoretically it can be adapted if it was made like brewed ginger beer, you would need to boil the ginger to kill off any natural yeats or microbes but there's no reason why it wouldn't work. You would need to goto a brewing store to get the "brown malt" I can try adapting the recipe this weekend if its something you would be keen on? (my medieval recipes requires it to be left for 3 months (better after 1 year), but an unfermented version would be drinkable after hours and chilled) I can say it really helps (and is tasty) here is the unaltered recipe, question are you ok with ginger beer? (it's usually 1% which isn't considered alcoholic by most nations) and do you know if it's the sulphides? because there are ways around that if you make your own (eg, is brewed cider a trigger?) Malted Ginger Malted Ginger is my own creation, a mix of a strong ginger beer and Brewers malt (brown), has a very strong ginger taste, great on a hot day of for those travel sick. 16L of water 2kg's Dextrose 800 grams of fresh ginger 200 grams (again) of fresh ginger (this is used in bottling don't buy yet) 500 grams of brown brewers malt High fruit wine yeast Firstly take 1 Ltr of water and 800 grams of fresh ginger (sliced like rounds of a cucumber) and bring to the boil, boiling for 30min In your fermenter take the remaining 15L of water and mix in the 2kg's of dextrose and 500 grams of Brown brewers malt Add the boiled ginger (liquid and ginger) to the fermenter Check the temperature of the liquid in the fermenter is under 34 degrees celsius (its best to make sure it's 23 degrees or less if you can be patient) and sprinkle in the high fruit wine yeast Mix a little then seal your fermenter and set with your airlock then wait for 1 - 2 months depending on fermentation rate. after it stops fermenting rack/bottle fermented brew. Notes: Ages very well, But mine has never lasted long past 1 year, it is always consumed.
  6. Leonhart

    New - From NZ

    of course tonic, when I was 6 I got frequent headaches usually lasting an hour or more if I didn't find a quiet and dark place a corner would do in a pinch, they would happen in cycles but as I was younger they were far more manageable, my family has a history of untreatable Migraines that is not defined by gender (runs only in male or females lines in some families) but my older sister and younger brother don't get them. (my grandfather did, grandmother didn't) I would feel dizzy and irritable as part of the onset would come in what I now know to be "clusters" but I had difficulty describing the pain as a child, Burning was my preferred word but in those days headaches were scorned and migraines new to NZ, I was given panadol (1/2 a tablet) and told to "suck it up" I had remissions of years before another cycle would start again always increasing in severity as I aged. Tonic, management of them now may save your son from the pain I now deal with, now CH is more manageable and I have noticed a lessening of the escalation since I was diagnosed by a specialist when I was 20 but for the first 14 years the escalation increased rapidly due to no treatment, this severely impacted my schoolwork and has left me with lifelong issues I am dealing with today I would honestly say identification and diagnosis is critical. I remember vividly having to sit an end of year exam that set my ability to get university placement while having a CH attack, suffice to say I failed, but all's not lost management is much better now and new research is being presented all the time, after reading through documents here I can't believe that Oxygen isn't the goto treatment. does you son find his light sensitive? (no one asked me when I was a kid so I don't remember and am unsure if it's a symptom or was caused by CH (a good way to know is if he's out in sunlight does he sneeze?)
  7. Leonhart

    New - From NZ

    Hey CHfather, Absolutely, I was recommended them by my Doctor who specializes in geriatric medicine and has some experience with Migraines and CH they are used quite commonly here in NZ for Migraine suffer but also now recommended for CH suffers too (and are covered under our free healthcare here is prescribed by a doctor) basically there has been evidence that certain wavelengths of light can trigger Migraines and CH attacks (although the evidence for help with CH is currently inconclusive and more research needs to done) it could be that they help manager other symptoms Different colours block different spectrums but is also good for CH sufferers who suffer from Photosensitivity and a syndrome called Irlen Syndrome http://irlen.com/Amber helps me a ton its one of the techniques I have been using to control my CH and reduce triggers or buildup that triggers and attack. I use a sunglasses frame which does not press on my nose the frames just very gently rest (you may need to try many many frames that fit your face shape) But I have found wavelength blocking to be effective.
  8. Leonhart

    New - From NZ

    Hey Toni I am in dunedin but I know Tauranga well, As for O2 I am very lucky in this regard as we have a local BoC supplier (I am sure you do too) who provides O2 for OxYacetylene welding not med grade but is clean and pure, OxyA kits are cheap(ish) don't require special permits here (you can even get the tiny portable kits from Mitre 10 (if they stock them), I have a small Kit I use when welding and cutting for making armour, it's actually easier for us then other countries, I never thought of trying it for CH, but have rigged a mask from a respirator this morning to try for my next attack. for me support in NZ has been a long, long road so many people here think CH is just a bad headache that some panadol or nurofen + codeine (in dire times) will fix and they go pale when you tell them you are put onto IV morphine.. I have been misdiagnosed until I was 20 as CH was not known very well in the NZ medical system and is still badly treated, back in the day there were no approved treatments but nowadays you not treated as a lab rat anymore. The biggest issue i've had is employers now wanting to hire you and CH is very misunderstood in NZ, they dont realise its controllable once you find the right combination of meds and treatment or at least can be alleviated or delayed.
  9. Leonhart

    New - From NZ

    Hello, Very nice to find such a large amount of condensed information and many things I need to talk to my doctor about (strategies yet untried) but I was referred to this board by Bryce after he read my artical here: http://www.stuff.co.nz/stuff-nation/assignments/share-your-news-and-views/15312259/I-am-sick-not-unemployableabout the struggles of trying to from employment while Suffering from CH. I was diagnosed with CH 14 years ago after suffering from "headaches" since I was 6 yo's, later when I was 10 the diagnosis was upgraded to migraines but the cycles confused doctor's, CH wasn't a known condition in NZ 24 years ago and was later re-diagnosed as a CH sufferer when I was 20. My CH induces blindness as an effect due to pressure on the optic nerve as well as the usual effects. I have tried everything under the sun, available in NZ and now manageable CH for this cycle of 1 bad attack per week using dietary changes and light wavelength blocking (Orange glasses work for me) stress management through meditation (unknown if this is related but helps with depressions as a side effects of inability to find employment) and fitness, again may be unrelated but helps in other ways. I do have a question though and this may have been covered before inside s topic which I haven't had a chance to read through everything yet, Do you guys notice an increasing tolerance for pain, this cycle has lasted so far 8 years (3 per week for first 4 years, down to 1 per week on avg) I guess with the pain level CH induces tolerance is expect but I can accidently cut myself now and not notice, also I have a hobby as a medieval recreationalist in which we fight full contact in armour with Rattan (a very hard bamboo, unarmoured strikes would cause trauma, broken bones on joints) my pain tolerance has risen significantly this last cycle to the point that a hard blow is not felt and I need to rely on the vibration of the armour to indicate impact, I am worried that if this trend continues I will be able to break bones and not feel it. NZ is a weird place for CH, Oxygen is a mostly unknown treatment of all the times I have been hospitalised I can say Oxygen was only administered once which was recently (end 2015?) mostly I am pumped full of morphine so will be discussing with my doctor the treatments I have found here and showing her the research. I am very glad this forum exists, I read recently that Isolation is a symptom of CH now as the pain encourages us to withdraw from society, it's good to know we are not alone. PS, I have found that A stronger Ginger drink helps a lot as a attack triggers, if anyone is interested I can add my recipe for Alcoholic malted ginger (brewed) it works really well for anti nausea as well allowing you to avoid over the counter drugs that reacts with other drugs and far more palatable and more effective that ginger tea's (I have found, may not work for other, but works for me) think ginger beer on steroids its very strong.
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