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      Welcome   01/25/2017

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  1. Hi blueblueblue, So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018. I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now. Regards, Brian E McGeeney, MD, MPH, MBA Neurology Dept, Boston University School of Medicine and Boston Medical Center.
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  2. Hi littlecush...welcome...sorry you gotta be here...but tis the RIGHT place! For many years I was DESPERATE to "explain" to non clusterheads what it was like. Even best of friends, coworkers and family members would roll their eyes and "yup" me. There is even a marvelous letter penned by Simon explaining what the ailment is...quite thorough and touching...and I even gave up giving that to folks....it just didn't register. The ONLY person...other than other clusterheads and ONE neurologist..... who ever got it..... was a coworker who had a friend with CH he used to drive to the ER. Anymore I just don't give a damn....got more important things to concentrate on....nobody hears nothing but positive from me. Getting hit is a bitch....in between hits? life is wonderful. Mind game I guess............ Re work...I get it...used to worry obsessively about how I "appeared". This kind of depends on the type of work and the kind of folks you work with and their regard...or not.... for you...beyond your "ailment" ... YMMV. I just worked my ass off in between hits or inability to function: accepted extra work, extra hrs, extra responsibility, extra anything. I know this sounds glib....and it is the hardest thing to do and NOT always possible....but I figured I had no choice. Additionally, the stress of work was a preventative...until I got home...THEN got BLASTED..... What made the above...and life in general POSSIBLE was OXYGEN!!!!!! I carried an e-tank with me everywhere I went...with a clustermask purchased at ch.com (my favorite possession). I hit that baby with an energy drink appetizer at first sign of hit.....and back to work. I sure hope you got access to O2 ...and with proper technique you will be transformed.................................... Night time hits are particularly cruel...pain, sleeploss, aggravation, etc..... am quoting myself from another post below: When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep. Ya gotta work the mental aspect too. YMMV...this is what worked for me: Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out. Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat.... Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................ Best Jon
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  3. Welcome to the community Melissa....sorry you needed to join us! Your last post does indeed sound like classic clusters I'm sad to say! Your priorities should be getting a confirmed diagnosis.....with the diagnosis, if the doc is worth a crap, you should be able to get a script for high flow oxygen, and read up on the vitamin D3 regimen in the files. Dallas Denny
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  4. Hi Melissa, I'm sorry this is happening to you. are your headaches spread out over your head? Or are they concentrated in one area? Where are they? what does the pain feel like, specifically? Does your nose run or your eye tear up on the side of the pain? Do your headaches tend to happen at the same time of day? We are not doctors and cannot diagnose you with cluster headaches; however, there are some tell-tale signs to look for, which is why I asked you those questions. To get a diagnosis of cluster headaches, you will need to see a neurologist. Preferably one with a headache specialty. The ClusterBusters and ClusterHeadaches.com maintain a list of medical providers that are familiar with CH. In the meantime, we have some techniques we use around here that may help you with the pain: 1) keep a large glass of ice water on you at all times with a straw and buy some 5 hour energy drinks. When you feel a headache coming on, IMMEDIATELY, drink one 5 hour energy in one go, then suck the ice water into the back of your throat on the roof of your mouth on the same side as the headache. This can sometimes abort a cluster headache attack (but it is not a guarantee). Keep sucking on that water until the headache feeling passes. If it comes back, keep sucking on it. Watch your caffeine intake when using this method 2) there is a tendon under your ear lobe on your neck. Sometimes you can ease the pain by pressing on this tendon on the CH side hard (it will hurt), and holding the pressure for a slow count of 30. 3) my go-to in a CH attack is to run an extremely hot shower. I sit in the shower, in the dark, and run the piping hot water right on my face. This sometimes eases the pain for 45 seconds at a time. It's not a solution, but can help weather the storm. For a long attack, it gets old though. Some folks around here prefer ice. There are many other treatment options available: if you have cluster headaches, the standard medical practice is to use: 1) Imitrex to abort acute attacks. 2) Verapamil long term to disrupt your cycle. 3) Steroids short-term to give your body a jolt and hopefully shake up the cycle. A doctor can tell you more about them if you like. More than anything else, the use of oxygen to abort attacks is indicated by the medical literature. You can find more information about oxygen in the ClusterBuster Files section of the forum. While you are there, read up on the Vitamin D method as well. Last, there is the ClusterBuster method, which involves taking certain psychedelic substances to stop a cluster headache cycle and prevent future ones. There are many knowledgeable people around here who can answer your questions about that should you choose it. finally, start keeping a diary of your headaches. What time are they? How bad are they? Where are they on your head? How long did they last? What made them feel better? This is important to help you plan what to do about them. again, I'm sorry this is happening to you, and I hope you find some relief soon. People here will answer your questions and you have many treatment options available. Stay positive !!!!
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  5. I just stumbled upon this website in search for some sort of cure for my headaches. I just had to take many weeks off work to deal with a cluster after 2 year remission. I had my first headaches very young, around 14. At the time it was pretty much just "eat some Tylenol" situation. They slowed down in my early 20's. I think I know why now but it would have been nice to know during the intense regions of the pain. Relationships and friends lost over crushing my face into pillows and floundering around; I wouldn't have wanted to be around me, not surprised in the least I became a misfit. CH was diagnosis and it was pretty obvious, unilateral left side, unreasonably painful, to the point that I'm not even sure I can feel physical pain like I should be able to since the 6+ years of chronic headaches. I had hope that after a couple years of remission some miracle cure had come out and seeing an ER would fix me during this new bout. It looks like the same landscape as it was before. I know what makes them go away, I wish everyone did and it was accessible. Oxygen doesn't seem to work for me; I have huge lungs - different story but they are gigantic. Maybe if I increased the flow it could help. Calcium channel blockers did nothing, triptans do very little other than side effects and weird injection site pain. Anyway, just introducing myself. Looking for a new neurologist in Boston area that specializes in headaches, specifically CH. I am sick of being grouped in with "migraine sufferers". I am sure that is terrible but they are clearly wholly different in their origins and mitigation. Hope everyone is doing alright, stay strong etc.
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  6. As I sit here, at the tail end of my second attack of the day, I can't help but to think about how I have taken for granted every single day of my life before these headaches so suddenly appeared. How the little things, that used to get me going, the "woe is me" moments that I would bestow upon myself, or the days I would think to myself, "my life is so hard," seem so insignificant I cant wrap my head around it now. Although I have lived with these headaches for only a little over three weeks now, I feel that everything I see or do now seems to be in a different light, every second of my day that I don't have to go through the pain that I indure during these attacks to the right side of my brain, feel like a gift, like a blessing that I hadn't seen in the past, that I had been blind to for thirty years. Just wanted to get that off my chest, knowing for certain, that everyone who suffers here would understand this....like nobody else around me can. Thanks for listening.
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  7. As fella' said in his first post, there are some things you can try right now to stop an attack or at least make it so it's not so bad. Later (as soon as possible), a doctor can prescribe you some things that are will help more reliably, but for right now . . . 1. Drink down an energy shot such as 5-Hour Energy at the first sign of an attack. Don't wait -- just do it. Many people prefer them very cold. The ingredient in these that helps most is caffeine, but many people think the taurine and maybe the B vitamins also help. If you don't have an energy shot handy, try a very strong cup or more of coffee. (For a large proportion of people, taking this caffeine during the night doesn't keep them awake.) 2. Drink ice water through a straw aimed at the roof of your mouth. A lot of it. Your goal is to create "brain freeze." 3. Very hot water, however it helps you most. Some people find that standing in a tub with your feet in very hot water helps them. Some have said that alternating between the hot tub and some relatively cold room air helps. In addition . . . Some people find that it helps to deeply breathe cold air, from an air conditioner if you're inside or outside if the air is cold where you are. Some people find that vigorous exercise helps. Vigorous exercise outside in cold air can be beneficial for some. Melatonin taken at night can help. The body gets quite low in melatonin during cluster headache periods. Many start with about 9mg and some work up well into the 20-plus mg range. Some people find that their CH periods coincide with times of high pollen or other kinds of allergies. One expert recommends taking 25mg of Benadryl every 4 hours, and 50mg at night. If you do take this Benadryl dose at night, don't also take the melatonin. Two people here have said that they got benefit for stopping or reducing an attack from combining the juice of one or two limes with a teaspoon of baking powder in water, preferably bottled water. They both took this along with an energy shot. As fella' and Denny also said, the vitamin D3 regimen described in the ClusterBuster Files section of the board can help a lot, although it probably won't help immediately. See what you can do to get started with that. There are a lot of videos on youtube of people having CH attacks. Maybe your mom would be willing to watch some to see what this condition can do to people. All the things you are experiencing, from the willingness to harm yourself to make the pain go away, to the dread of when another attack will come, to the lack of understanding from people who should be more on your side, are things many people here have gone through. It's a terrible condition to have, but you can manage it so it doesn't wreck your life. You are at the worst of it now, but it will get much better. AND there are new medicines on the horizon with great promise. You have one very important thing going for you: You have what seems to be an accurate diagnosis. Most people go through years and years of misdiagnosis and mistreatment -- teeth pulled, sinus surgeries, medications that don't help, being told that there is something wrong with them mentally -- before they somehow get a correct CH diagnosis. You are on what seems like the right path to get needed treatments pretty quickly. Do read the numbered files in the ClusterBuster Files section to understand about another option, "busting," that has helped many.
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  8. I agree with Denny; definitely sounds like clusters and definitely need to see a doctor with information about CH as soon as possible. High flow oxygen will help you abort attacks and control your pain and then you can start worrying about what to do long term. I understand how you feel with your mom. I used to tell people I'd jab a syringe full of heroin in my eye if I thought it would help. That brings up an important point: opiates do not help cluster headaches. Many well-meaning doctors and people will offer them to you but I would advise you to turn them down. They aren't worth a damn for a cluster attack and you could get addicted (also, constipated). I can't tell you how many doctors whipped out the script pad and asked me if I wanted narcotics for my pain. If your mom is someone you can rely on, tell her "mom, this is kicking my ass and I need your help. I need you to: 1) help me schedule a doctor's appointment, preferably with a neurologist or neurology PA 2) help me when I have an attack to do things I need doing (like watching the baby) 3) understand that I can't control when this happens" And if your mom can't help, don't despair! Everyone here will always respond and help you. You can always improve your situation, and there are always things you can try.
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  9. Hi Peggy, Firstly, I would get thee to a neurologist (with a headache specialty) if you haven't been yet. What you describe could be cluster headaches, though I can tell you I've never been able to put on an ice pack and go to sleep when I'm having an attack. Normally, attacks are far too severe for that to work and necessitate rocking back and forth or pacing to cope with the pain. Bad attacks usually involve me intentionally scalding myself in the shower or banging my head on a wall/ doorknob. Thankfully, my condition has improved enough that that doesn't happen very often anymore but in order to treat yourself, you need to know exactly what you're dealing with first. As far as relief goes, Imitrex is the standard abortive medicine for both migraines and clusters. The generic form is called Sumatriptan. You can get it as an injectable (which is a necessity for most folks with CHs) or in nasal spray or pill form. I have it but only use it as an emergency because I have found it causes me to have rebound headaches. But for stopping a headache, it is miraculously effective. I gave my wife one (a pill) for a severe migraine she was having last week and she was absolutely blown away by how fast and how well it worked. The Vitamin D regimen was developed by a fella with CH who goes by the handle "Batch". Standard doses of Vit D on Batch's regime are 10,000 ius/ day. I personally take 20,000/ day. This is substantially more than even a heavy load recommended by doctors for, for example, multiple sclerosis. When you are taking Vitamin D in such large doses, you need to take magnesium and calcium supplements to help you absorb the vitamin D and to counteract any deficiencies arising from its use. Furthermore, you need to take it with food, preferably a large meal. Batch's Vitamin D3 write-up in the ClusterBuster Files can give you more detail; I'm giving the broad strokes here. Batch is insistent that you get a blood test to monitor your Vitamin D blood levels (details in the file) to insure you have reached the therapeutic level. After you've been diagnosed with CHs, standard medical procedure is to put you on Verapamil and steroids. Many folks find this helps them. Many folks don't. YMMV. when you say you've done oxygen: people with cluster headaches need at least 15lpm through a nonrebreather mask for effective aborts. And you need to be huffing on it pretty hard. It's a specific process. I hope this helps you and I'm sorry about your headaches.
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  10. No apology needed Angela. Working up the amount of Verap is common. Some go very high if they don't have side effects and it takes that much to keep the CH at bay. If you can, make sure that you are getting the 'short acting' version, not the 'extended release' type. For some reason, it works better for us. If your script says take twice a day, it is likely long acting. Also, keep an eye on your blood pressure as Verap will lower it. I hope that they gave you a non-rebreather mask. That is the kind with a bag attached and no outside air gets in, just pure O2. The D3 regimen is great!! It has helped many people actually become Pain Free. Just follow the directions and I suggest you do a loading dose for starters. It can provide relief in a couple of weeks if not sooner. And it is all good for you. Are you aware that 'Chronic' means that you do not have more than 2-4 weeks headache free in a year? Has it been that long for you? Have you tried caffeine at the first sign of a hit? It can abort one if taken at the very start. And it is great to drink one really fast on the way to your O2.Did you get any instructions on how to use your O2? That is really important. Welcome and we hope to see you pain free ASAP!!!!!
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  11. Hey Guys. I stopped smoking a while ago and start vaping, I never noticed any interaction with CH. This saturday I orderd liquid from another brand and BOOM 4 attacks a day ( I normaly suffer from 1 a 2 a day). So I checked the ingredients and the new liquid contains ethanol wich is alcohol. So if there are more vapers around here, avoid that. Greetz.
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  12. Hi Richard, as CHFather said, there's no way to tell if it gets worse or better in its own; it's different for everyone. The good news is, you have a diagnosis which means you are on the path to proper treatment! CHFather summed up all the various approaches perfectly. You ask what works for us, so, for myself, I have successfully "Busted" a normal 6 - 8 week headache cycle in three weeks. That means I took psychedelic substances using the ClusterBuster methods and my headaches went away. It is not like popping a Tylenol; there are specific rules to follow that play a significant role in how effective it is. Please read up or ask questions (or both!) before trying this method. Furthermore, I take the Vitamin D regimen per Batch's instructions as a preventative. The only difference is that I take a regular dose of 20,000 ius of Vitamin D a day (double Batch's recommendation). I'm about six and a half feet tall, so I need the extra boost to be on par with my size. I have an O2 tank I'm going to send back to the oxygen company soon, since my headaches have stopped. I also have oral and subcutaneous (shots) Imitrex. Imitrex works wonders on a headache when used properly, but I must caution you: I get rebound headaches when I use it and others have reported the same. I will only take Imitrex if it is a true emergency or if, for example, I'm in the middle of commuting home and can't pull over or last until I get home. I have also used the ice water/ 5 hour energy method referenced by CHFather. It's not a guarantee, but it has worked before. Finally, I'm big on keeping a headache diary. The collected data helps to figure out what works, what doesn't, and to keep a cool head (pun unintended) when things are at their worst. I'm sorry this is happening to you; it sucks. But there are people here to talk to, and many different strategies for dealing with this thing. Good luck!
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  13. Richard. The course of CH is unpredictable. Some people have long remissions, and some get "worse." However, with proper treatment, the "worse" can be managed so it's certainly not nearly as bad as what you've been going through -- and there is significant hope for effective preventives on the medical horizon. There are two categories of treatments, preventives and abortives. What works as an abortive is, first and foremost, oxygen. Effective; no side effects. You want a prescription for high-flow O2 (at least 15 liters per minute) with a non-rebreather mask. Oxygen in cylinders, not from a concentrator. Sumatriptan virtually always works as an abortive. If nasal spray didn't work for you, injections almost certainly will. Significant side effects, but it does stop an attack. As a preventive, I'm going to say that the vitamin D3 regimen is the best way to go. Good for you as well as being effective. Read about it in the ClusterBuster Files section. Verapamil can be effective, but many people need dosages that are higher than what most doctors know to prescribe: up to 960 mg/day. This level has to be gradually worked up to. There are a lot of other things that will help you, such as rapidly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Read around more (I know it's a pain, but you'll learn a lot) and you'll see other things that help (ice water, melatonin, Benadryl, ...). But from a doctor, what you want are an O2 prescription, verapamil, and sumatriptan/Imitrex. You might not use the verap and the trex (and the trex is frightfully expensive), but it's good to have the scripts. This site was founded by people who discovered that psychedelic substances, often taken at a sub-psychedelic level, will very often end cycles and might prevent future cycles. You can read more about that in the numbered files in the ClusterBuster Files section.
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  14. Wow Melissa...we really are sorry you need to be here...but you sure found the right place. Been doing this dance for over 35 yrs and the series of replies you got were as BRILLIANT as I've ever seen...starting with an awesome post from "fella"...................MY OH MY! My salvation was a forum like this (talkin to folks who KNOW...and will not tell you it's all in your head (even tho ironically it IS....sorry ch humor)), OXYGEN OXYGEN OXYGEN, verapamil on occasion, energy drinks, Zomig nasal spray (5 mg) for the breakthroughs)...which probably are contraindicated for a nursing mother...but keep in mind for later.....much less weird side effects (for me) than imitrex, AND the D3 regimen which Batch has developed and is cheap, easy, no script required, beneficial to overall health, and highly successful for a number of folks. Best Jon
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  15. Hey Melissa, We know what you're gong through... and if it is cluster headache (CH)... the good news is it doesn't need to be that way. You're likely vitamin D3 and magnesium deficient and these deficiencies are contributing to the frequency, severity and duration of your headaches. See your PCP for lab test of your serum 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. Data from the online survey of 215 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate they had a mean baseline 25(OH)D serum concentration before start of regimen of 23 ng/mL. As a CHer, we need our 25(OH)D serum concentration in a range between 80 and 120 ng/mL in order to remain CH pain free. Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following VitaminDWiki link and take a copy with you when you see your PCP for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
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  16. It can be frustrating to try to get a CH diagnosis, as I've said. Most doctors just aren't familiar with CH. If your doctor insists on treating you for migraines, that isn't completely bad news. Two standard treatments for migraine are also treatments for CH. One is a preventive, verapamil. It probably won't help you much in the beginning, unfortunately, because it has to be started at low levels and monitored for its effects on your heart. But it might help. An abortive often prescribed for migraine is sumatriptan (Imitrex/Imigram). This also works to stop CH attacks. BUT the most helpful kind for CH is injectable sumatriptan. That's what you want. At the very least, you want the sumatriptan nasal spray, which helps most people with CH. Pills will probably not help you. I just don't know whether a steroid taper is a migraine prescription. With CH, people often go on a steroid taper of about ten days or two weeks at the beginning of their treatment, at the same time as they start verapamil. Usually the steroids eliminate or reduce the pain while they are being taken -- and that gives more time for the verapamil to take effect as a preventive. Your doctor might typically prescribe other things for migraine. If you can, you should try to get those migraine meds I just mentioned prescribed if your doctor insists on a migraine diagnosis. The bad thing about being treated for migraines instead of CH is that oxygen, which is a very effective abortive for CH attacks and has the added benefit of not having the side effects associated with the other medications I have mentioned, is not prescribed for migraine. You should come as close as you can to begging for an oxygen (O2) prescription because it's the thing you want most. Your doctor has probably never written a prescription for O2 for a "headache" condition. I can tell you that the prescription should read something like this: "Oxygen therapy for cluster headache. 12-15 lpm for 15 minutes. Non-rebreather mask." (A doctor might use abbreviations for some of things.)
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  17. Nothing to add to fella's great post, except two questions: How long do your attacks last; and are you able to sit or lay still during them, or do you feel agitated and have to move around (or rock back and forth)? Mostly, I wanted you to know that there are many of us here ready to do our best to help you.
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  18. Now there's a name from the past. I'm sure I met Ben at a CH meeting in either Birmingham or London, but years ago. I hope he's well.
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  19. I’m glad you are feeling some relief but don’t let your guard down. Everyone reacts differently and maybe you found something for you and that’s awesome but I went full paleo for 5 years and it changed everything but my CH. I lost 100 lbs, skin cleared up, slept better (out of cycle), etc. when cycle was in, CH was there no matter what. That being said, being afflicted with CH is bad enough. Eating healthy may at least avoid other health risks. I hope you found something that works for you. Just be ready no matter what. Good luck.
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  20. Hey if you haven't tried it hydrive energy water is 180 mg of caffeine and the black cherry tastes pretty good and 0 calories. Just saying to my fellow caffeine junkies here.
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  21. Before I knew I had CH (when I thought I just had a curse), I used massage extensively for treatment. The massage therapist I saw at the time was pretty physiologically knowledgeable and said there's a muscle group that runs from behind your shoulder blade, up the side of your neck and across most of your face on the corresponding side and mine was tight as a drum on my right (cluster) side . He told me to lay on my back and roll a lacrosse or tennis ball under my back until it hit just between my spine and shoulder blade and lay the muscle on it then give a slow count of 30. It has helped me during clusters from time to time. This cycle, I was reading another post on these boards that identified a muscle between your jaw and ear that is taut during an attack and to push on this muscle until it releases. I have done this a couple times for attacks and shadows; it has helped quite a bit. I have even ended an attack early using this technique. Since my busts have shown success, I've continued to use it for shadows.
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  22. Merry Christmas and a happy new year to all my cluster buddys and their families. May we all have some pain free time with our loved ones.
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  23. This is an interesting description of CH. My CH always started in the same ways as described above. I'd get struck during the night. My first thoughts would be "No - no way! "This can't be happening out of the blue like this... again". And then I'd have to come out of denial and deal with the attack. My attacks always began with an uncomfortable feeling behind my right eye that I just felt I needed to get rid of. But I could do nothing to stop and and it would rapidly get worse. Normally, within ten minutes the attack would be excruciating. Back before I knew what my headaches were, I'd neck some pain killers and ride it out. They'd normally be at their worst for 30-60 minutes but they wouldn't end suddenly, as some people would describe. They'd begin to ease and gradually fade away over the space of say 30 mins. During my first few bouts I don't remember having any pain between attacks but I would get shadows and I'd often wake with a nagging ache behind my eye that'd make me jump out of bed. Like Fella says, I'd avoid lie-ins and I'd try to sleep quite propped up. Nobody's ever explained to me why it hurts more to lie flat when you're in cycle? My bouts of episodic CH would last 2-3 weeks, except my bout in '99 that lasted about 6 weeks. My remissions began to lengthen too. My bouts are different now and I question whether i still even have CH. I began to have bouts of shadows about 18 years ago. These would be episodes where I'd have shadows and constant pains and sensations in the CH part of my head. I was convinced my attacks were coming but they mostly didn't. Only on one occasion during these bouts of shadows has a real CH attack broken through, and that was after a heavy night of partying. It was also 14 years ago now. In 2002 and 2003, bouts of "normal" CH began in the "normal" way, i.e. a sudden attack during the night without warning. These went away fairly quickly, possibly because I used verapamil but my "real" bouts were always short. Since my last full CH attack, I've had bouts of shadows in 2004, 2006. 2010 and the current one that has been ongoing since June 2017 (yes - I had a blissful 7+ years of full remission). Shadow bouts vary in length. The shortest was a few days. The longest was over a year (they called me Chronic, in spite of me not having full attacks). The interesting thing as far as Peggy is concerned is that I am in almost constant pain. Today, for example, I have a burning, piercing pain in my nose and eye that feels like a hot screwdriver is being pushed up my nose. Some days this is more of an electric buzzing feeling. Other days is is a burning/piercing or a squeezing and twisting feeling. My right nostril also blocks repeatedly throughout the day and can become severely painful. I also get "shadow attacks" that begin to build like a real CH attack but they then level off at about a 2 -4 and can sit there for 4+ hours. I wake in the night with a piercing feeling in my eye but no CH attack. I woke this morning with the old nagging ache that used to be a warning that an attack might come, but it didn't. I generally sleep well and get pain free nights. In November I had a good 2-week period after a holiday where it felt like I might be back in remission but it didn't last. So, over the past 6 1/2 months I have had virtually no pain-free days whatsoever. I have a supply of O2 that I have tried just once. I have several Sumartriptan injections and nasal sprays to hand that remain untouched and I've very recently started verapamil to see if it'll knock this out. Sorry - it's a long post but the detail might help Peggy and I'm always on the look out for somebody that might recognise my symptoms. My current neuro seems pretty confused!
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  24. Hi and welcome! Sorry you need to be here...glad you found us..... To add to spiny's excellent comments: generally reported sweet spot for verapamil dosage is 480 mg/dy...divided doses...try timing doses just prior to expected hit times. Some folks...like me.... had to go to over 1000 mg/dy....a regular MD will freak at that number...an EXPERIENCED headache specialist will NOT. Typically a prednisone or methylprednisolone IV or tablet taper is undertaken when starting verapamil...frequently (but not always) will break a cycle and give the verapamil time to kick in (10 dys to 2 weeks typically). Clusterheads tend to call Topamax: Dopey Max ....as the side effects are life altering and unpleasant...... Look for the cheapest energy drinks that contain at least 100 mg caffeine and 1000 mg taurine...they are synergistic. Red Bull is the most famous but is WAY expensive and lower in these components than you need. Drink as cold and as fast as possible as soon as a hit seems imminent...carbonated versions seem to work better as absorption time is decreased..... Tell us about how you intend to use O2...the proper way will leave you in tears of joy and disbelief! Best Jon
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  25. Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness. I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away? If you do have CH, strong pain-killers (such as Toradol) are not going to help. The strongest analgesics/opiods don't work. As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time. If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine). You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.
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  26. "Expert Opinion: Coverage Gaps Leave Cluster Headache Undertreated" http://www.neurologyadvisor.com/migraine-and-headache/cluster-headache-oxygen-therapy-coverage/article/700033/ Promising that this is getting coverage within the medical community.
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  27. I've never indulged myself but after being around many, many cluster people I've heard a range of comments....it doesn't help and it doesn't hurt being far and away the most common. I've also heard a few swear it helps....and a few swear it's a trigger. Damifino. I do know when I was a tobacco user even the thought of lighting up during an attack would make me worse....but then the first thing I wanted after the pain was gone was a smoke.
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  28. I had a Cat scan, MRI and MRA. Laying down makes my head hurt worse . I am agitated . They come on randomly. If I wake up in the middle of the night I sneeze and then the headache. This isn't a normal sneeze. It is different then my normal sneeze . It is a very forceful sneeze.I don't sleep much. The neurologist said the nausea, sneeze and headache are all connected , and seems to think it's clusters. I have a weepy eye, and runny nose. He said you can't treat one because it's all one thing. He has another patient with the sneeze.
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  29. Vitamin D level is usually included in standard blood panel. If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think). Virtually everyone can get by with less than 6 mg. For some, 2mg is sufficient; 3 works for pretty much everyone. The Facebook group that the doctor mentions is "Cluster headaches." I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.
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  30. Welcome to the community blue...sorry ya need to be here! You have a most excellent neurologist in Boston who is also a longtime member here in Dr Brian McGeeney!! He has been attending our annual clusterbusters patient conference for several years and is a really great guy! Let his office know you're a clusterhead and I'm sure he'll work you in asap!! Dallas Denny
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  31. Hey Blue X 3, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way. You've got two effective options... Busting and Vitamin D3. The busting experts will be along shortly so I'll cover the vitamin D as you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Download the anti-inflammatory CH preventative treatment protocol from the following VitaminDWiki link and take it to your PCP. When you get there, discuss starting this regimen and ask for the lab test of your serum 25(OH)D. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd If you’re still in doubt about starting this regimen, please read through the following posts by other CHers who started this regimen. I have hundreds more just like them. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 Please feel free to ask questions... Most CHers have them when starting this regimen... I'm here to help. Take care and please keep us posted, V/R, Batch
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  32. Melissa, A CHer with active CH nursing a 7 month old baby... BINGO!!! You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors. If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3. Yes... I can hear the wheels turning... Who is Batch and what are is qualifications for saying this? Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time student of vitamin D3 since October of 2010. That's when I discovered that 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors prevented my chronic CH... I've been CH pain free ever since. This regimen is so important for good health and among other benefits, it builds a T-Rex immune system, that I have my entire family taking it and none of them have CH. Of particular interest to you are my daughter and niece. Both have been taking this regimen for years. My daughter gave birth to her second child in July. This baby and his sister, now 3 years, were both bathed in maternal vitamin D3 at a dose of 10,000 IU/day since conception. Both pregnancies and deliveries were flawless. Moreover their neuromotor, physical and learning development while breastfeeding at this maternal vitamin D3 dose are nothing short of phenomenal. My niece took this same regimen through her pregnancy and is still taking it like my daughter while breastfeeding. Orrin, 5 months and Fred, a.k.a., Winefred, 3 years... Yes, I'm a doting old grandfather... but I've never seen more healthy babies... and Fred speaks English and Hochdeutch... I credit their excellent health and rapid development to their mother taking 10,000 IU/day through pregnancy and while breastfeeding... Fred also takes vitamin D3 at a dose of 50 IU per pound of body weight a day... She's a 40 pounder so that works out to a vitamin D3 dose of 2000 IU/day... and not the 600 IU/day recommended by bureaucrats at the National Academy of Medicine, formerly called the Institute of Medicine (IOM). Now to the experts with the sheepskins in the appropriate fields and years of professional experience with vitamin D3 studies who suggest 10,000 IU/day during pregnancy and while breastfeeding... Bruce W. Hollis, PhD, Professor of Pediatrics, Biochemistry and Molecular Biology, and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC. The Institute of Medicine has set the “upper limit” of recommended intake at 4000 IU. Is it safe for an adult to take 6400 IU? "The IOM setting a limit of 4,000 IU per day was subjective and not based on any trials. The Endocrine Society guidelines state that 10,000 IU per day is safe. In my own experience with our trial and several other trials in which I have been involved (involving tens of thousands of patients), not a SINGLE adverse event has been observed due to vitamin D intake. I personally take 6,000 IU per day and have for years, and my daughter just had a child and is taking 10,000 IU per day while lactating (going on a year now). Totally safe." Hmmm... How about that... A highly qualified PhD, Professor of Pediatrics, Biochemistry and Molecular Biology and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC recommends a maternal vitamin D3 dose of 10,000 IU/day... and that's what his daughter has been taking while breastfeeding... "Totally Safe." See the following link for more details: https://kellymom.com/nutrition/vitamins/vitamin-d-and-breastfeeding/ This was an interesting study where one group of 74 breastfeeding mothers took the "Old School" recommended prenatal vitamins and minerals with 400 IU/day vitamin D3 during pregnancy and while breast feeding... After 7 months of breastfeeding their mean serum 25(OH)D was only 79 nmol/L (36.6 ng/mL). 25(OH)D lab tests of their babies indicated 78% of them were vitamin D3 deficient until provided with 400 mg/day supplemental vitamin D3. The other group of 78 breastfeeding mothers took the same prenatal vitamins and minerals with 400 IU/day vitamin D3 PLUS another 6,000 IU/day vitamin D3. After 7 months of breastfeeding their mean serum 25(OH)D concentration was 151.2 nmol/L (60.5 ng/mL) and more importantly, their babies had a mean serum 25(OH)D concentration of 106.9 nmol/L (42.8 ng/mL) WITHOUT supplemental vitamin D3. Grassrootshealth recommends a maternal vitamin D3 intake during breastfeeding of 6400 IU/day... as a minimum... to ensure breast milk contains ≥ 400 IU/liter 25(OH)D. See the following link for more details. https://grassrootshealth.net/blog/vitamin-d-for-breastfeeding-mother/ Grassrootshealth.net also has a wonderful 25(OH)D home blood spot test kit for $70, no Rx needed and you'll get the results back in less than two weeks. I've used their DIY 25(OH)D test kits for years. See the following link for details. https://grassrootshealth.net/project/daction/ So there you have it... You can continue suffering from CH... or you can download the anti-inflammatory regimen, take a copy to your PCP, discuss it, then ask for the 25(OH)D lab test. When the results of that lab test come back indicating you're vitamin D3 deficient, start this regimen and follow it carefully. I'd go one step further and take your baby to the pediatrician and ask for the same 25(OH)D lab test. If you do this, your CH will become a thing of the past and your baby will be getting more than sufficient vitamin D3 while breastfeeding. Over the last seven years, at least 4 ladies with CH started this regimen and continued it through pregnancy and while breast feeding... Results... No standard CH medications with all the side effects, no CH and 4 very healthy babies. Take care and please keep us posted. V/R, Batch
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  33. To the best of my recollection, we have only had one other nursing mother here. She was permitted to use oxygen and verapamil. She was probably already using oxygen, which would have made it easier than trying to get a new oxygen prescription from a doctor who already doesn't know very much. I don't know what it was about verapamil that made it permissible to her doctor. The Facebook group "Cluster headaches" has quite an active membership (it was founded by some folks from here). You might be able to get some answers there about nursing mothers and meds. It's a closed group, so you have to ask to be accepted, but usually that doesn't take very long. Be sure you go to that group (there's a photo of three smiling people at the top of the page). There are several CH-related groups at FB, and some are a little fishy.
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  34. Douglas, What level of "trip" effects are you getting? I'm curious if you're getting a strong enough dose? Also what other meds are you taking? Some meds (especially imitrex) block the help mm gives us. Please post details and I'm sure someone will come along that can provide some better coaching on using mm more effectively. PFW, J
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  35. I haven't been in cycle since I've found it. So I really can't say. But I can chug it and it was only $1 a bottle and tasted pretty good. Just another tool for the arsenal. And the clincher for my older middle-aged dad body 0 calories.
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  36. Hey Leo, I call my grand daughter "Fred" a.k.a. Winefred... 3. She's been bathed in maternal vitamin D3 since conception as I encouraged my daughter to start the complete anti-inflammatory regimen in 2012. I'm also familiar with the lion bit... but not with a linkage to CH... My middle name is Lyon... Your 25(OH)D serum concentration at 343 nmol/L (137 ng/mL) is fine as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. Be sure to talk with your PCP about getting these two lab tests at the next opportunity. For reference, I'm a chronic type CHer and have maintained my 25(OH)D at an average of 140 ±50 ng/mL for the last 3 years. Be sure to start the vitamin K2 and I wouldn't worry about the vitamin A.. Just eat a few carrots a week and you'll be getting all the beta carotene you need. I'm not a fan of lithium... Minimal benefits and maximum side effects made it a bad choice with too much risk for me to even consider. If you haven't already done so, download a copy of the anti-inflammatory regimen at the following link and be sure to discuss it with your PCP when you go in for the additional lab tests. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care, have a Very Merry Christmas and Happy New Year free of CH. V/R, Batch
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  37. A) Haven't seen Ben Khan's name mentioned in a long time...tis unfortunate as he is a hero in my eyes as nearly a Father of clustermasks and CH abort with O2. Best to you Ben...I hope you are well and PF. B') Early in my use of O2 as an abort I would sometimes get "rebound" hits 20 minutes after the initial abort...twas frustrating, annoying, scary, and a waste of O2....but it passed. Batch has postulated that it has to do with either failure to: completely abort hit (not on O2 long enough) or lack of "toning" of the blood vessels involved in constriction and therefor relief from a CH hit...ya gotta train 'em to constrict....that's good enough for me. Best Jon
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  38. Did you know that there was a time, not so very long ago, when "leonine features" were considered to be a characteristic of people with CH? A doctor suggested that in 1972, but it was still being discussed in the literature in the 1990s (https://www.ncbi.nlm.nih.gov/pubmed/1468913?dopt=Abstract), and still appears in some CH-related information today. It seems ridiculous now (to me at least), along with other once-accepted "truths" such as that women don't get CH (they're just overreacting to migraines); that people with hazel eyes are predisposed to CH; and that people with CH tend to be substance abusers. I think these things were probably all well-intentioned efforts to get a better handle on CH, but of course they all also led to harm in terms of getting an accurate diagnosis.
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  39. Thank you, Merry Christmas and a happy new year to all of you. I've said it a couple times but important things bear repeating: these forums and the people in them have been a godsend this cycle. Thank you, all, for the advice and support. It means so much. -Chris
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  40. Well said. Best wishes to all.
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  41. Fella1234 please don't be worried about using oxygen. I can't begin to tell you how much less I fear the attacks if I have my tank. I've had just one attack go full blown in over 12 yrs and only recently because Ive no emergency tank in Australia like I do in uk. Like most people on here I've tried quite a few meds, most didnt help me, some gave me nasty side effects, so hadnt been using any since o2, with the recent exceptions of trying to break the start of this cycle and end the last one, only when I realised the little CH b@stard had changed anyway, despite me believing that we had a deal on cycle length. If you've not tried d3, I'd definitely give it a go. For me it's worked quicker than prednisone in stopping the attacks - PF nearly 3 weeks with only 1 breakthrough when I dropped dose. *if* o2 gives me rebounds and its not just a pattern change - i still take it anyway! The thought of enduring a full 3hr attack compared to relief within 15 min's! If i was rebounds it could be that my technique is poor. And it could just be what happens to me wouldn't happen to you. I'm an ECH with what I believe is a non standard pattern and response. Im sure others will share their support for oxygen, but if you're busting I assume O2 is one of your better abortives anyway? I'm sorry I've scared you, absolutely not my intention, please give the O2 a go.
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  42. I'd contact my supplier and ask it both the connections are controlled by the same valve. I must admit that it looks like that would be the case but one never knows.
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  43. Thank you for all this info. I'm not sure it's pertinent here, since your O2/rebound pattern is older than this and the D3 seems to have corrected any effects from lithium, but lithium is notorious for creating rebound attacks when its use is discontinued. Some medical literature suggests only prescribing it for chronic CH since the rebounds from getting off it are so bad (and the side effects in general are so typically noxious). I also had a hard time understanding Batch's hyperventilation instructions, but what I think is correct is that there are a series of very short, very deep inhale/exhale "cycles," each lasting just a few seconds, and that you do ten of those cycles with room air, in a total of about 30 seconds, before you start on the O2. I'm going to paste below what I think is his most recent writing about this. You might not have seen his "redneck reservoir bag" approach; these instructions are part of it (link to it is below). Yes, it could be that staying on the O2 longer after an abort will hold off some subsequent hits. I think "5-10 minutes" is the standard advice. This is the doggone thing that makes anecdotal evidence so challenging. My daughter (the person in my family with CH) never took any CH meds except, for a short while, gabapentin, for the first ten years she had CH. She didn't even have oxygen. But her cycles got longer and worse, pretty much year after year. Nice story about Ben Khan. I wonder how many people with CH are indebted to someone who reached out a hand to them. I know that as a family member, the kindness that Bob Wold extended to me about 8 years ago will never be forgotten (and still brings some tears of gratitude to my eyes). Somebody here might be in touch with Mr. Khan. Here's Batch on hyperventilating when using the "red neck" method. You can see the whole file, with details about using the redneck bag, here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below... [These are the procedures] The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion. Ten of these complete cycles in 30 seconds should start to push your body into respiratory alkalosis... (Remember the movie "The Andromeda Strain") On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing... This will squeeze out another half to full liter of exhaled breath that's highest in CO2. You'll know you're doing this procedure correctly when you feel a slight tingling or prickling on your face, lips, hands, lower legs and feet. This is called paresthesia.
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  44. I am guessing that Batch will show up soon to give the most reliable answer to your D3 question. If not, you can PM him (though I am curious to see his response, so I hope he replies here). Thank you very much for the lithium info. I will keep that in mind. Yesterday, on another thread, I suggested that rebound attacks after O2 aren't a real thing. Would you mind saying a little more about yours? In the most recent study of rebounds, the general conclusion was that at proper flow rates and with "better techniques in oxygen application," rebounds were pretty much a thing of the past (they were reported by Kudrow at the very beginning of O2 use, in 1981). But if you get them, you get them. Did you stop using O2, or have you just accepted the likelihood of rebounds? And did Ben Khan tell you about rebounds, or about O2? Thank you.
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  45. I don't think I'd ever call a CHFather reply unhelpful. I think what you've found is spot on. I've just never laid hands on the parts in question and as such I'm cautious about recommending something I've never had experience with.
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  47. Hey ya'll! This is a copy and paste of a thread that "Hollywood Dan" posted in a facebook group this morning. Let me say in advance that there are some naysayers regarding this subject due to the docs past legal issues, and I respect those folks reservations but we all have to decide for ourselves to what lengths we're willing to go to tame or slay the beast so wanted to make sure this info is available here as well. "Jesus shot update. So far, I believe 5 chronics and one episodic have tried the shot. It's a 3 minute process consisting of 2 steroids and vitamin B12. Dr Mike Lonergan in Weatherford Ok came up with this anti-inflammatory shot, and says Jesus inspired it; thus the name. I'm patient #1.... I had my shot on 5-11-16 and went from daily and nightly screamers to completely pain free immediately. I have not had a hit since. I had 3 nights of shadows mid November and got another shot 11-21-16. No noticeable side effects other than an increased appetite, which is great for me. Patient #2 RL. Ryan went from CCH to completely pain free, having one hit the day after his shot. His headaches returned after four and a half months. He got a "pimply rash" that the doctor said isn't that unusual for a young guy full of testosterone. Patient #3. DE. David is chronic. He had the shot twice with no results. He is the only complete failure, which breaks my heart. Patient #4 ET. Eric took the shot several months ago and didn't get complete remission, although he did get some relief. He scheduled a second shot, which the doctor DOESN'T charge for. By the time he got his second shot, he had become completely pain free, but went ahead and got his second shot. He is still completely pain free. No side effects that I know of. Patient #5. VR. Vale is episodic. She got the shot a few months ago. She is in her longest remission in her 13 years of ECH. No side effects reported. Patient #6. VA. Virginia got the shot a few months ago, and like Eric, didn't get immediate results. She got a second shot at no charge and is now 100% pain free. She is enjoying Prosecco for the first time in years, as alcohol is a sure trigger for her. Sorry I don't have exact dates, which I would really like to have. I'm posting this because I am completely pain free and want others to give this shot a try, if they find they are out of options. The shot costs $300 and is not covered by insurance. Dr Mike was convicted of money crimes and is x con. That concerns me less than a pimple on my ass. I will defend him, as he has helped me and the others in a huge way." Dallas Denny
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  49. Just registered. Hopefully it is still running... Thanks. John.
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  50. Hello all, I was diagnosed with Sunct in 2012. In 2013, a diagnosis of Local/Focal seizure syndrome was added. In February, I filed for SSDI. The caseworker had a difficult time finding Sunct in her system and ran my SSDI on epilepsy and Sleep apnea. I, of course, was denied because my 13 pages of medical evidence I brought with me to my appointment was directed at Sunct. I have been unable to drive for a few months now. The denial said, I was not severe enough to warrant disability. Last Friday, I went in to the hospital to do a brain map in the hopes of showing where in my brain activity is ignited. Good news! The seizures are aura related, along with the numbness in fingers and toes, facial paralysis, and confusion. I never knew what an aura was until last Friday. I was on 3000 mg of Keppra and the seizure specialist said I was suppose to lower the Keppra to 500 mg 2 times a day and get CBT therapy. I looked at her with confusion. I possess a BA in Psychology & a minor in Criminal Justice, as well as, an MBA. She said with CBT the aura symptoms will be improved, but, you still can not drive. Oh, you need to go see your neuro in two weeks and poof I am dismissed. Mind you, I am still experiencing everything I have been for the past 3 years. The Sunct is in remission THANK YOU JESUS! Question: Do you think I should hire an attorney to appeal the SSDI decision? I get so confused, I am not sure if I can do this myself. I need help! Thanks everyone! - Sheri :-[
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