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      Welcome   01/25/2017

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  1. Hi Andrew As Ch father states busting or d3 may help but first a correct diagnosis is essential ,as you are in the Uk like myself can i ask a few questions that may help us help you 1.has a headache specialist /neurologist diagnosed you? 2.have you tried oxygen ? (its quite possible you now live in an area where the demand valve system is available on prescription ) 3.if no to the two above has your GP referred you to a headache specialist neurologist ? pm or answer here if you wish zany
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  2. Andrew, mm (and truffles), LSD and LSA definitely help. They've been the only thing that's given many of us our lives back. I was chronic and have been taking regular doses for over 7 years now. I've been pain free a significant amount of that time. I believe truffles are available where you live. Please read the files section on this message board. There's a specific process you need to follow. 1) detox from all triptamine type drugs (Imitrex, maxalt etc. etc). 2) Wait 5 days from he start of detox for your first dose. Take enough for a "threshold" dose. Meaning you get some trip out of it. Most of us find that the stronger the trip the better the medicine works on our CH. 3) You'll likely get what's called "slap backs" after your first dose. Don't worry, the attacks will go down after the 2nd and 3rd doses. Take each dose 5 days apart (not 4, not 6). For some reason 5 days is the sweet spot for something in our brain to reset. After the 2nd dose you should notice the attacks being milder and slightly further apart. After the 3rd dose most people are pain free, but a lot of people also need another dose. It all just depends on your body chemistry, and the strength of the mm. post questions. (but please read the busting files section). :) J
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  3. Welcome Andrew! With respect to oxygen, some folks in the UK experience problems sourcing O2 thru ya'lls NHS....however, unless there are underlying conditions that contraindicate its use, it is recognized as a viable treatment in the UK....if you have any problems of that nature, contact OUCH UK and they will provide assistance with the HOOF form. Where are you located in the UK? I know several clusterheads in England and Scotland....a friend in Scotland hosts a couple meet n greet events every year.....nothing like meeting someone who "gets it" and understands exactly what you deal with! Dallas Denny
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  4. Hi Andrew, I just want to wish you all the strength you need to go on. Try to find a positive spirit to go on. Rogier
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  5. Andrew, you are right to seriously consider busting, and THMH has given you what you need to know: read the numbered files in the Files section and follow the process he has described. If you have not done the "Vitamin D3" regimen you should start it. It has made a very big difference for many, many people. You can also read about that in the Files section. (I realize that people in your situation are inclined to eventually give up on treatments, and surely you might wonder how some vitamins will help you when powerful medicines have not helped. But many people in that very situation have achieved very good results with the D3 regimen. You have to follow it to the letter. We find often that when people say they have "tried everything," they have missed some core elements, most particularly oxygen. Have you used oxygen? If so, how was it delivered? Because often people who did not get relief from oxygen were using ineffective delivery systems -- the regulator did not provide a high-enough flow rate; the mask was shoddy or used wrong; the O2 came from a concentrator, not from a tank/cylinder/cannister. No matter what success you have with busting and D3, effective oxygen can be a life-changer. If you have actually used everything pharmaceutical that typically helps with CH (I would include sumatriptan/Imigran, corticosteroids, and verapamil at the top of that list) and none of it helps you, and not even ketamine helps you, I have to say that I would also test a different diagnosis, such as paroxysmal hemicrania or hemicrania continua. Those things look a lot like cluster headaches -- but they are effectively treated with a single medication, indomethacin. So if indomethacin is not on the list of things you have tried, it would be worth a shot.
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  6. Hi all Just a follow-up Last week I lived the literal week from hell. I have to go back 12 years to find a time when my headaches were as bad as they were this week. Took forever for the main pain to go away and the ghost hung on for hours. The only saving grace was the advice on the o2 therapy. All I can say is OMG. I'm still in shock over how quickly and effectively it works. I used it 4x over the weekend . Watched the clock when I started on the mask. Swear....3 minutes and the relief started. Stayed on for the perfunctory 10 - 15 minutes and suddenly life was beautiful. I actually scheduled an appointment with my doctor for tomorrow to discuss what could only be called crisis management, but with the o2, the crisis seems to be over. For anyone interested, $250 out the door to lease an full 80 cylinder for a year (with tank deposit ) , the regulator from Harbor Freight, and the non rebreather from Amazon. $18 for refills. Best money I ever spent. BTW I have a cutting torch setup, so the tank definitely won't go to waste even once this cycle is done. I just want to say thanks to everyone who offered their support and advice. I'll continue to keep all of you in my prayers.
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  7. I'm off to the Mobile World Congress in Barcelona to try to find funding for the app. Problem only is that ticket cost €799,- for the cheapest ones and platinum tickets will cost €5.000,- So no entry for me. But, i've decided to solve this problem in an easy way. I've made myself a sigh I can wear on the frond an on the back of my body and I'm going to try to get attention that way. Big sign saying "Patient-driven eHealth start-up looks for €250.000" with a QR code below it leading the visitor to my pdf presentation that contains a link to a paypal payment service. All my friend think I lost something somewhere on the way but I don't care, A "NO" I have already, lets see if we can get a "YES"
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  8. The improved efficacy of oxygen therapy in aborting CH is based on lowering the partial pressure of arterial CO2 (PaCO2) through hyperventilation either with 100% oxygen or with room air for at least 30 seconds followed by a lung full of 100% oxygen that's held for 30 seconds. Breathing 100% oxygen at 7 to 9 liters/minute will actually make cluster headache worse if the user is animated by the CH pain. The extra physical activity coupled with a restricted level of lung ventilation causes PaCO2 to rise and systemic pH to drop (more acidic). This stimulates vasodilation further aggravating CH. Blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating drives the cardiovascular system into respiratory alkalosis... (Remember the Andromeda Strain)? During respiratory alkalosis several things happen. As the PaCO2 levels drop, the blood becomes less acid so pH rises. This drop in PaCO2 and elevated pH are sensed by chemical receptors in the Aortic and Carotid bodies and the brain stem. They in turn signal the breathing center to slow the rate of respiration, the heart to beat slower and the circulatory system's arteries and capillaries to constrict. This response is part of what's called pH homeostasis, a feedback control mechanism the body uses that tries to maintain optimum levels of PaCO2 and PaO2. However as we are intentionally hyperventilating, this increases the vasoconstriction. The elevated pH (more alkaline) also causes blood hemoglobin to have a greater affinity for oxygen so each molecule of hemoglobin becomes capable of attracting and holding more molecules of oxygen... up to 12% more oxygen than during normal respiration. This results in a super-oxygenated flow of blood to the brain. When the increased level of vasoconstriction caused by a low PaCO2 and elevated pH is coupled with super-oxygenated blood flow, we experience rapid and reliable CH aborts. Bottom line... If you want fast and reliable CH aborts, ya gotta be huffing and puffing like a big bad wolf trying to blow down the pig's houses of straw and sticks... It's hard work... but well worth the extra effort. One word of caution. Do not hold the lungful of 100% oxygen longer than 30 seconds. The reason for this is simple. Our bodies are running like a car's engine producing exhaust... in our case, CO2. Although there's sufficient oxygen in the lungful of 100% oxygen to hold your breath for over a minute... the level of CO2 or PaCO2 starts climbing as soon as you stop hyperventilating and hold your breath. If you hold your breath for more than 30 seconds, the level of CO2 rises above normal and this triggers vasodilation... In the scheme of Good and Bad things... That's Bad for CHers as vasodilation increases CH pain and prolongs the abort process. Take care, V/R, Batch
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  9. OXYGEN!!!! It's not even a question. You must have it. The vitamin D3 regimen described in the ClusterBuster Files section has helped hundreds of people.
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  10. UPDATE, That was PFM Pure fucking Magic.... to think I have been using O2 wrong for like 19 years. That was amazing just zapped a CH in under 5 min. I feel ashamed I didn't read on this site before. Thank you batch and thank all of you for this info Sorry for all these posts, hope I am not clogging up the board. Also tried the 5 hour energy and i guess that helped...thank you Jon and CHF
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  11. Yo, Caffeine PLUS taurine seems to work better.... Sleep > ch hit is a classic cruelty trigger employed by the beast... Would advise not to mess with your verapamil dosage without your Docs knowledge and approval. It is typical and recommended that you get a ECG when upping dosage as verap can affect heart rhythm... My med of last resort (after O2, energy drink and verap didn't work) is Zomig nasal spray....99% effective in about 8-10 min timeframe.... Best Jon
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  12. jon019 wrote: >> Re energy drinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can. <<< I feel like I should have some pre-written text about energy shots vs energy drinks, because I don't have the "energy" to give a full statement about them each time I mention them. Those little 2-ounce shots, such as 5-Hour Energy, actually have more caffeine and taurine (total, not per ounce) than the most of the bigger energy drinks. Regular Strength 5-Hour has 200 mg of caffeine; Extra Strength has 230. By comparison, there are many sizes and types of Monster drinks, but even the 16-ounce ones have no more than 160 total mg of caffeine. So in my view the 5-Hour Energy, which can be chugged very fast, is considerably more likely to be helpful. An 8-ounce Red Bull has 80mg, so an Extra Strength 5-Hour is the same as three of those. I'm not advocating for 5-Hour in particular, just saying that many people are surprised by the relative caffeine levels of shots vs. drinks. jon' -- I copied and pasted your text up above, and it came out with that big line spacing you were mentioning. When I hit "delete" at the end of each line, it came out as it is above. So seems that somehow your system is adding carriage returns at the ends of lines.
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  13. Try all these wonderful suggestions. Some things work for others and some things don't work for others-Its seems to be that every body/brain finds different solutions. My Husband was able to break his 20 year cycle of very bad clusters with Seroquel- an antidepressant. If you try everything and they don't work please try a RX of seroquel (if Doctor approved for you) ..for a few weeks to see if you get a result. All the very best! Hugs!
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  14. hello trackle,just to let you know my dose of 480 mil twice daily" 960 daily" does not effect mm treatment, for me that is"! had a mm dose last night and my head is clear as a bell today!,i will repeat in five days! hope all goes well for you ,you are chatting to the right folks ! have faith in this site and you will be alright.!
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  15. CHF has given you some great advice. There is a lot of knowledge in the Clusterbuster Files. I hope you read several of them! Playing Well Together is also a good one you must read. There are some meds that will block your busting attempts and must be avoided for several days before dosing. I would recommend 1.0gm for starters if you are new to MM. Then work up a bit depending on your personal response. It is advisable to have a 'sitter' with you if possible, especially if it is something you are not accustomed to taking. Your will find help with preparation in the files too. Set and setting are important. Being in a good frame of mind in a comfortable setting are important. The D3 Regimen can lower the intensity and slow the ramp-up of your hits. Some even go pain free on it! And it is just good for you. Give it a try as it can help quickly. Take the full regimen!!! You could notice a pain reduction in very short order. There is a great file on how to use your O2 to best advantage in the CB Files too. Proper breathing of your O2 can speed your aborts and reduce the amount of O2 you need per hit. The way these medicines are used is pretty specific and based on a lot of CH heads out there. I'm sure that your friend means well, but the advice is not quite hitting the mark here. ATB
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  16. wish i could help, but just not expert. you could try typing [truffles] into the search bar at the top of the page. i know there's been a lot of discussion here about strains and quantities. wishing you the best -- you're a good one!
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  17. sounds like migraine,the reason i say that is the same as your reason!,this pain is on a scale i can not put into words how strong these things are!have you checked out any youtube vids of the attacks?i cant watch them they are horrid reminders but anyway mate lets just hope you do have bad migraines ,and hope you can find some answers on this site.also try mm treatment see if helps as i know any kind of headache is bad,especially migraine sufferers !.good luck
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  18. sorry id not get back earlier guys,the reason why i did continue to receive the blocks from my specialist is for many reasons,!the first one being any line of defence with this condition is another comfort.!for example ,when i blocked my receptors with mm last year it gave me some hope!,as i have not informed my specialist of my discovery of mm and lsd treatment !reason for this is i do not want to jeopardise my future treatment ! i have had to much of a bad experience with docs all my cluster life ,apart from my specialist who has been treating me for over 15 years !so i also do not question his results ! some might think why not say !but sure some do understand,! i will do my very best to get the results for us all ,i do not do web stuff,i am only on this site,"like my life private!" but will try my best to get these results, or you could probably get my specialist on the web," i would not know," "we are here for each other!"
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  19. Batch, Thanks for the information very informative. I just checked how long it takes for my O2 bag to fill using 8 Lpm. It takes 11 seconds. The huffing method works for me but it takes much longer. Is 11 seconds of holding the O2 in dangerous to me? I do not want to be giving bad advice.
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  20. Interesting that they're still using cocaine. That was the original substance used, but for quite a while it's been primarily lidocaine. Would very strongly urge your son to start now on the vitamin D3 regimen that has helped hundreds of people with CH. You can read about it in the ClusterBuster Files section of this board.
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  21. Hi My 18 year old son has had 2 episodic cluster periods ( march 2016 x 3 weeks and sept 2016 x 2 weeks ) He was treated with prednisone and verapamil at onset. Oxygen was helpful the first time and not the second. He is allergic to triptans. He had sphenopalatine ganglion (SPG) block with 4% cocaine drip intranasal 10 days into the last cluster period. The SPG block did cut in half the length ( 25-30 min down to 15-18 min) in each of the final four headaches of his cluster period . The intensity was unchanged but each headache was absolutely shorter (He had 9:30 AM and 9:30 PM headaches so we could clearly track the length). As I anticipate he will have a new cluster period start in the next 2-3 week we will begin SPG blocks on day one or two and assess. I will report back when we see if this plan is helpful.
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  22. I think if nerve blocks worked reliably there would be more published. Blocks are well compensated procedures. There little data to support and even if there was the injection is very operator dependent. Also its hard to imagine someone with enough cluster patients to claim "great results". Not to be negative but......
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  23. Hi, sorry for you hearing such a bad story... where the hell is your OXYGEN? Probably the main abortive and very efective tool for many of us. You may also go into imitrex instead of sumatriptan. As cold water is giving some relife to you, Ergotamin may be the better choise. Check it out. also I guess you do not take enough verapamil, people are used to take up to 1gr. per day which may be considered insane by your doc... I'm pretty shure you'll get a lot of feedback and support from this portal and a great volume of relief, as most of us do so. Give it a Try
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  24. In my point of view triptanes made my attack heavier. Aborting them fast but general intensity level of all attacks a lot stronger. I went through hell leaving the triptans and changing to oxygen only. Goodluck Ouelmath, hope you feel better soon.
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  25. i have been getting the nerve blocks for just over 4 years!i have not had positive results,but me and my specialist are convinced the negative results are due to me to being in full cluster at the time the,reason for that is when i go into cluster i have to organise appointment and flight,therefore i would be at least 2 weeks into full cluster! although my specialist informs me that he has had great results with other patients! good luck with your studies,just let me know if can help with anymore input!
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  26. Yes thank you very much for your advocacy! Also anyone else here that went! Don't know you all personally but very thankful to have dedicated folks speaking on our behalf.
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  27. Many people who come here really desperate find that "busting" (taking psychedelic substances, sometimes in doses small enough that they do not cause a "trip") is the answer to their prayers. You can read about busting in the numbered files in the "ClusterBuster Files" section. What might be the hard part for you is that you should stop taking triptans for five days before busting. We can discuss this more if you decide that you want to try busting. "Truffles" from the Netherlands have proven to be quite effective for busting. Busting has helped many people with migraines, too. Meanwhile . . . Do you have a preventive medication? Usually that's a calcium channel blocker called verapamil in the US -- and usually it has to be taken at higher levels than many doctors prescribe in order for it to be effective. Have you tried quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack? If you are able to get melatonin (it's available openly here, but I think only by prescription in Europe), 9 mg at night, or more, can be very helpful. Magnesium can help (that is mentioned in Bob's paper; I'm not sure of the dosage). Some people find that if they stay on the oxygen after an attack has been stopped, for about 10 minutes, it can hold off future attacks. Oxygen when used in conventional ways is most effective if the flow rate is at least 15 liters per minutes, and if you have a mask that is made for people with CH. You probably didn't have either of those things the last time you tried it. There is also another method for using oxygen that we can tell you about if you get that prescription. Finally, I would suggest that you look at the list of "triggers" in the ClusterBuster Files section. It is possible that you might notice something there that is making your situation worse.
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  28. :-) I wonder how many people here have actually tried Batch's method. I think you are the first to report on having done it. Thrilled that it worked so well (plus the energy shot).
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  29. Yup jtux, great question!! I think most folks know the story of Flash and Pink Shark Mark (I had the opportunity to chat with Flash on facebook recently which was pretty damned cool!), but I've never heard a story regarding LSA. I will say though that in my much younger recreational days, it was common knowledge that you could trip balls on HBWR....I took a heroic dose in the summer of 72 and went to see Black Oak Arkansas and Grand Funk Railroad at the Cotton Bowl!! I did receive a text back from brother Bob.....said it was a long story and he was between congressional meetings at Headache on the Hill and will get back to me later! DD
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  30. Hi Kyle, Sorry to see you are here. But better here than on any other (medical) website in my point of view. My pains stop pretty fast normally. A sign for me always is that I don't wake up with an attack. I have made an app to register your attacks and all you do to feel better. A simple tool that helps you keep track of what you do with the push of a button. It could help you get a clear view on what you have done. Maybe not now but after a first year of cycle you will know your rhythm and you will see better the results of all the things you will try to get rid of the attacks. You can download it for free on android or iPhone just by looking for "Register your Journey" If you have questions you can do it here or with a PM
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  31. Episodic suffer for 15 years - with each episode growing in intensity/# of attacks/last 2-3 years including periodic daytime attacks. During last episode read about benefits of LSD/LSA. New attacks began 1+ month ago and with approximately 3-5 headaches per night. Was able to order some RC seeds. 2 weeks ago took approximately 14 broken down through cold water extraction pus small amount of lemon juice. Week ago the same method was used, 17 seeds. Since the initial intake of the RC seeds I have been primarily headache free, with a few nights of a headache - but significantly less intense than during a episode. Question is, do I keep taking the same amount of RC seeds weekly over the next several weeks as the length of the cluster period would last - or cease consumption and evaluate how the headaches are over the next few days/weeks. Thanks for any response.
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  32. Wow so many responses I'm blown away thank you all , wasn't expecting any reply , on further investigation I have my mind set on mm therapy, when I was clueless to ch I took many unprescribed drugs and find it hard to get prescriptions from my doctor. I'm just trying to figure out what mm are best to use it keep hearing golden teacher is a good one , thanks again people can't believe their is so many of us , massive respect to all the survivors ✌
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  33. Welcome Michelle! You story has a lot a similarity to mine. I also agree with you that pain is relative and no has a right to compare to others. The human experience is truly unique. As far the 02 goes hope they got a good set up for you, it took me few tries to get a truly effective one. Sometimes doctors like to start out to low and not the best equipment. Also you should try the D3 regimen. It has been effective for many, even us episodics.
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  34. When I first began having clusters, I was in my 20's. I had no idea what was going on. They were very painful, but not the worst pain I'd ever experienced. I did run into the ER on multiple occasions, thinking I was having a stroke or an aneurysm... only to be given multiple diagnosis like sinus infections, TMJ, ear infections, etc. Usually, by the time I got to the ER and waited for my turn, my episode was almost near the end & I'd feel silly for being there. Finally, my doctor sent me to a neuro who ran tests and dx'd them as clusters and over the next years, I was a guinea pig for several different med's that were ineffective. As the years passed, the pain increased considerably from the episodes. Fortunately, I only get them in the fall and winter. I cannot even fathom how someone could stay alive as a chronic CH sufferer. My worst bout ever was 4.5 months straight of 1 per night, every night. I was darn near suicidal, myself. So, all of that to say... that regarding pain, the more years I experienced them... the worse the pain has become. I, too, would LOVE to pass out during an episode. I am too busy pacing and trying to run away from it to do so. I am now pushing 50 this year. My doctor just presribed me 02 for the first time in 25 years, after I made the request. I was set up with 2 tanks and instructions this afternoon & will see how that works. I also have read several posts on the board from people who have bad reactions to Prednisone. I don't like taking it, but it is the only thing that I have found that can actually end a cycle. Works especially well if I catch it very early on. 60 mg x 3 days, 40 mg x 3 days, 20 mg x 3 days & "usually" they are gone... cycle over. I have been pretty fortunate the past few years,, but have found that I cannot mess with the Prednisone and "under-dose" or the right dosage will not work & I get stuck in a cycle. That is where I am at now. So, pain is relative. We all have different pain tolerances, but if you have met the criteria... don't get hung up on the pain level! The day may come that you wish you could go back to your current levels. I know I sure do! In 25 years, I went from "This is awful, but tolerable" to "I'd rather have all 10 of my fingers sliced off, one at a time, than go through this every night!" BTW... Hi everyone! I am new to the board! Michelle
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  36. Courtesy of our friend dinmerced Chf...he's the one I mentioned that has used them....it definitely beats the hell out of what I paid between the doc visit and the charge for blood work! DD
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  37. Here ya go, go to this link and search for 25 hydroxy d blood test http://www.lifeextension.com All of the D3 regimen co factors can be ordered online at Pipingrock.com DD
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  38. There is a list here of recommended doctors for CH: https://clusterbusters.org/cluster-resources/ It's not updated or complete, but if you can find someone on this list, you will be better off. Many/most neurologists don't recognize CH, and when they do, many/most make terrible prescriptions (not prescribing oxygen, for example). Some of his symptoms sound like they might be hemicrania: "Hemicrania continua is characterized as a continuous, strictly unilateral headache of mild to moderate intensity with superimposed exacerbations of more severe pain. During these exacerbations, one or more autonomic symptoms (ptosis, conjunctival injection, lacrimation, and nasal congestion) occur ipsilateral to the pain. Many patients report a foreign body sensation, like an eyelash or a piece of sand, in the eye ipsilateral to the pain. This headache is defined by its absolute response to therapeutic doses of indomethacin." Here's something I'm absolutely not sure about. This is all speculative. I think you might be able to contact a local blood test provider and get a vitamin D test done. You could look up "blood test provider" on google and call one. They might not take insurance, but the cost might not be much more than the online D test, and the results would be considerably quicker (you're looking at at least a couple of weeks to get the online test, return it, and get the results) and more reliable. [EDIT: Looking back at Denny's post, I see that the process he's describing is potentially quicker than the one I was thinking of, where you order the kit online, it gets mailed to you, you put some blood on it, mail it back, and wait for results. But maybe what I'm suggesting would skip the middle man.] My daughter has CH. It is very difficult to deal with that as a parent. THANK YOU for doing what you are doing!!
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  39. G'mornin Meg and welcome to the community! Spot on advice from Amon! Agree with him that these don't sound like classic cluster symptoms, but I wouldn't rule them out....number one objective is getting him into a good neurologist, preferably one who is a headache specialist to rule out other nasty conditions that mimic clusters!! Diet changes have been reported to help by some folks....I know one longtime member here who eliminated gluten but I think that was to help his migraines. If, in fact, your boy gets a cluster dx, the vitamin D3 anti inflammatory regimen is an excellent preventative avenue, and, with that diagnosis, the neuro should give you a script for high flow oxygen to be used as an abortive measure! So sorry ya'll had the need to join us!! Sending pf thoughts and prayers! Dallas Denny
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  40. Shared a link above I will let someone else jump in on that. All I know is this has helped me.
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  41. Senstrom The link Chf listed for the harbor freight regulator is the one I've been using with my welding oxygen cylinder for several years....and I have the clusterO2 mask which works on that regulator as well. Dallas Denny
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  42. Hi John, The only correction I will make to this topic is that not all regulators that have a DISS connection bypass the LPM setting. There are many flavors out there. There are regulators that have two air ports and both may have DISS connections (see attached picture). There are also those that have one DISS connection but no LPM adjustment. If you have a two port model, the port beneath the pressure gauge will be the 50 PSI port. If your DISS is at the end near the LPM dial it is controlled by the dial and it probably will not work well with the demand valve. I posted this on the Facebook group. Its everything you need for a "E" tank, including the regulator, mask, hose, and demand valve. The seller told me he has several to sell and will relist when this one sells. I say this because I hate to see a couple of clusterheads get into a bidding war. Please note in the instructions about shipping. I was the first to buy from him and asked he throw everything in a medium flat rate box. I was the only bidder and got mine for $112 with shipping. EBAY Demand Valve listing
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  43. There seem to be people who disagree with me about this, but my answer is yes/no. Yes to the important parts -- a demand valve attached to a DISS fitting will bypass the lpm settings on your regulator, and most importantly, yes, you will get as much O2 as you need every time you need it just by inhaling. This second part is not relevant to the "yesses" I just stated, but it's of interest to me, and I will be happy to be corrected if I am wrong. I think lpm stops being meaningful when you are using a demand valve. Think of the typical mask with a reservoir bag. The lpm determines how fast the bag gets filled, but when you breathe in, you are not breathing the O2 in at the rate it came into the bag (the lpm that your regulator is set to), you're breathing it in at whatever rate your inhalation creates. With a demand valve, the O2 is always available, so there's no bag to fill, and therefore no relevance to flow rate in that regard. Similarly, as with a bag-based mask, when you breathe in, you are breathing in at whatever "flow rate" your inhalation creates. Doesn't matter what it is; the oxygen will always be there for you.
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  44. G'mornin Bob! I've been using welding oxygen for 7 years now with no ill effects! The O2 itself is the same as medical....the difference is that medical tanks are vacuumed prior to refill while welding tanks just get a sniff test. Just don't let them know that you intend to breathe it! Dallas Denny
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  45. If you live in S. California and have never met another clusterhead, this is your chance. This is a very informal meeting, but with a few planned topics. When: Feb. 25, 2017 10AM – 4 PM Where: 740 Sound, 12509 Beatrice Street Los Angeles, Ca. 90066 Hosts: Scott Ganary, Dave Nickerson Please RSVP to christine.clustersla@gmail.com message dlnmerced for more information
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  46. CH Hi! I do remember you from back in the day lol. I was Hedferst then. I actually did a maintenance dose every year for years...funny after 4 years PF I assumed they were gone...remember reading early on that eventually they peter out...at least back in the 90's that was the idea. So I assumed at 50 I was done with them (started at 19). I do know for sure the further south in the US I lived the (hate to even use this word with clusters) milder they were. Of course, after getting careless with preventative dosing...the bastard came back. Its been few weeks now and I am smacking it back..I can feel it loosing its fight...but it came back. One thing for certain...prior to MM, cluster was who I was...AFTER MM? Cluster is something i have...it no longer owns me. And while having them now is no laughing matter, knowing I have beat this so many many times over the past 20 years, I look at as a painful inconvenience....that will pass in a couple of weeks..unlike the 3 month cycles I endured for the first 20 years...In fact, it smacked back hard after the first dose, but has progressively decreased in severity and frequency over the past 2 weeks and if I don't so anything stupid like drink wine or a scotch (my tequila idea of being clear didn't work lol) I am getting by with a trusty ice pack to the neck and temple...energy shots and Bendryl...not bad...not too bad at all. Nice to see you are still here. Sad to see Andrew and Mark gone. I'll never be able to repay the debt.
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  47. Me, too. The Sewell poster on LSA. As you say, Geoff', may that wonderful man rest in peace. He answered every email question I sent him with kindness and compassion. Geoff' -- Did you do maintenance dosing to prevent cycles?
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  48. I think you should just send your wife instead. I have some stories I'd like to tell her ;-) Bob
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  50. I echo Echo. The presentation of diagnostic criteria is spot on. Pain is a perception and everyone experiences it and handles it in a very personal way. Sure there has to be scales to determine relative degrees of pain for treating acute situations like surgery but on an individual ongoing basis the pain scales may not help as much. Plus reporting pain is not a contest. It doesn't matter what others are experiencing or who has the worse pain. What matters is how the pain affects your ability to live, how you manage the pain and how you prevent it. If you meet the criteria for cluster headaches and you respond to treatments like oxygen almost certainly you have cluster headaches.
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