Archimedes

Thanks both. Ah Pebbles , you got me wrong. I didnt mean such sites promoting snake oil or whatever, I really just meant regular boards on the same topic like this one here. Someone around the globe might have recently discovered something similar like MMs , D3 or whatever. Yes, this will make it onto here at some point if valid but it may take awhile. I am not interested in taking risks either and research is key as you say. Still and at least for additional theoretical input it may be there is new stuff around we haven't heard of (yet) due to a language barrier. As you say it is / will be bits and pieces but why not. Up to everyone themselves to consider if BS or an actual piece of the puzzle

Hi guys, Sorry if this is a stupid question or done already. I would assume there are similar boards then this one here around the globe but posting is very likley not in English. I mean like new patient driven findings discussed in Mandarin, Russian, Indian you name it. We can't count on users from there popping up here (just like the other way around ) Like busting or D3, someone might have discovered something else recently and it may take time until it spreads as you sure agree. I remain on my theory that this whole condition isn't as rare as we think - we are just few who experience it more painfully due to some other condition-mix on top, but that could still mean there remains common ground earlier in the chain where some undiscussed (hopefully non pharmaceutical) treatment options could arise. Again apologies if this is done already by (multilingual) board members. I can help sharing German stuff but the main CH page is a pretty much dead board.

I think the initial question makes sense and I am currently somehow in the same situation questioning myself if it's really CH looking at the low pain severity since many weeks. I pass 3 months now being in cycle while I usually just had few weeks the recent years. (Yes it is CH very certain and I am properly diagnosed, but we all had these questioning phases I guess ) In terms of pain, since 3 weeks no night timers anymore, I am just stilll waked up at 6:50am each morning with an incoming attack. However as soon as I get up, 10 minutes later it's gone. Doesn't even pass a Kip 1 - from my perception. No o2 needed anymore either. But my" Kip 1 or 2 might be a 4 for others. Perception and pain tolerance differs from person to person I believe and I think is even different from the actual "type of pain". I.e some might experience a "stabbing" pain worse than a pounding pain or whatever. I mean like when I badly burn myself on the oven for example I don't mind much whilst my lady does cry from a similar injury. The other way around, at the dentist I require 2 shots of narcotics that could put a horse down where a normal person is usually completely numb from a single shot already (and sometimes I still feel pain from the drilling vs. my girlfriend can even have her teeth drilled without narcotics ...) I just take 240mg verap each day and 10k d3 with all cofactors. Also no sugar, wheat, cow diary products or meat since weeks. I had also started psychological treatment as well to lower my behaviour induced stress levels (breathing techniques, progressive muscle relaxation things like that . Taking some time each day focusing to breath deeply and calm down really feels good ) Unfortunately nothing of this breaks the cycle as it looks but I believe this is why attacks are not painful anymore and don't even require further treatment. My theory is, as stated by others here, that way more people suffer from CH but don't notice it due to very low or non existing pain levels as their body does still down regulate some of the components of a potential chain reaction triggering of a pain escalation. I.e they just sleep through it . I guess this never can be proven or ruled out as you would require a large randomized study across the population (which I don't think anyone would bother to get funding for)

Thanks J, It's new to me, that's why I wondered. Its my 4th cycle since it started 8 years ago and I never had that yet. This one however lasting close to 3 months already while the other years I just had to endure a few weeks. Probably something changed to the worse.

Hi all, I am experienced since some weeks that shortly before an attack goes away, the ear on my right side (affected side) pops. Ear pops - attack done. Happens anytime, with o2 or without o2 (I have some mild attacks that vanish in some minutes, so dont use o2 for them) I don't have ear pain during attacks or any feeling of ear swelling. Does anyone have the same ? I wonder if someone knows about any technique to "force" this Working your jaw , jawning or doing the divers trick as during an descending airplane flight doesn't do anything so far. I've googled that ear popping can be allergic reaction related (besides air pressure changes). Interesting.

As Pixie says, getting a diagnose first is absolute key. Depending on your access to a real specialist who really knows his stuff the best thing as with many other diseases is to be as good informed as possible to not get sent away with an unsatisfying answer. This is an obscure disease however with plenty good (and many of them harmless) options to ease the burden - if she has CH. Please correct me if this is a bad advice but from my personal experience and many others reporting similar, a diet change can already show some improvement. In case you need to wait too long for an appointment you might consider giving this a try already and see what happens. There should be limited risk as you just avoid what isn't good for most "normal" people anyways when consumed constantly. Some weeks ago I have removed a lot of things from my diet and feel overall way better and only have a single, very mild attack each morning at 7am coming from 3-8 attacks per night (I am now working on getting rid of the remaining attack as well of course) What I did: - no sugar, no meat, no cow diary products, no wheat, no alcohol, no glutamate, very reduced coffee consumption, no food with high histamine or purine levels.Smoking is very bad as well obviously, I can't stop though yet. Only eat self prepared food, so you know what's in it. Most of these things raise your PH level and / or are high in purine. There is clear evidence that many if not all of us have an imbalanced PH level (constantly too acidic) You will ask what's left to eat - there is plenty left actually to keep your calorie count positive and get all vital nutritions. - Most vegetables (avoid histamine rich ones like tomatoes), also check if your wife has pollen allergies. Some veggies share the same allergen as certain pollen so there is a chance for a cross allergy. ( example = Arlen pollen allergic person may be allergic to potatoes and carrots as well). Being allergic does not necessarily mean you have to have clear symptoms like hey fever / itchy eyes etc !! - Butter and goat cheese - Most berries (very rich in antioxidants), be careful with strawberries - many fruits but be careful with some like bananas or citrus - self baked bread, takes literally 5 minutes to prepare .Gluten free wheat, no yeast, baking powder, joghurt lactose free, some seeds, salt, water. Mix and bake for 40 minutes, done. -Fish (only salt water like Pacific salmon) - eggs are technically not great when it comes to purine but I seem to tolerate them - all native / cold pressed oils are very good and many like coconut oil have great anti inflammatory effects and provide with omega 3 fats and good calories. Hemp oil, olive oil, coconut etc, do some reading maybe. Now this is a pretty tough switch both from an organising perspective as well as a mental one (sugar withdrawal...) But it's doable. No cheating, or you can't assess if it helps. Took me a week or 2 until I saw the benefits but they are undeniable and I don't crave anything anymore. To be clear, I don't think this is neither cause nor cure for CH but it may drastically help. I am convinced though there is a link, there is more and more clear scientific evidence showing up the recent years that your gut is actually the root cause triggering off many bad things that have originally been thought of originating somewhere else. Parkinson, Alzheimer's, MS, even depression and many forms of cancer you name it are tracked back to an damaged gut system. Even if your Wife doesn't have CH, I recommend read up leaky gut syndrome or one of the pre stage causes namley Candida overgrowth. (Hello again sugary diet...) Again, this maybe isn't a good idea to do without a doctor monitoring if there are other conditions like diabetes or else but you can sure assess this on your own. I just type all of this because even if it's not CH, being more carefully on what we eat should only benefit us on many levels. (If not done too extreme of course Let us know what you think

Thanks for the warm welcome ! Such a great community here, literally in each post so much support and open discussion this is awesome. I did a lot of web research and reading already and feel pretty well informed, it comes more down to being completely lost in which direction to start looking to get a hold of what's needed for busting. I don't know anyone personally so probably need to look around the interwebs. Not sure thats the best approach though. Regarding D3, that was not a good experience for me personally. Kicking me from 1ch per evening into 8 severe atracks each hour per night. Same day I stopped the 7 day 50k loading I went back to 1 - 2 max. Yes I have spoken with batch on that one. Looking at the positive results and all biochemical links this makes a lot of sense to me but might just not work for me due to other underlying conditions. I heavily reaserach into that topic and see various specialists to separate things checked up.

Hi all, Long time lurker on this board, sorry haven't introduced myself yet but will do so soon along with my story and observations/theory (as teaser already - diet change has been a major improvement) -Before I do this, I would really appreciate if someone can already help me with guidance re: busting in western Europe. I am male and in my mid 30s, this is my 4th episode. It worries me majorly that this time it drags on since over 2 months and doesn't go away. Usually I just had a couple weeks and it was gone. Not this time. I am well equipped with a good neurologist, O2, verap, Zomig, magnesium etc. O2 works fine. D3 regimen -or any of the cofactors- did worsen the situation for me but again more on that in my full story later. Still, it took over my life at this point and I will consider busting now I have a couple of other physical problems and I just can't take this anymore on top of everything else. I am highly desperate and problem is I don't have any idea how to get started. Can someone from Western Europe please shoot me PM or guide me to a user you know of in my region I could contact with some questions ? that would be highly appreciated. Thanks so much in advance Archimedes