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  1. I don't like speaking ill of someone but I went to see Dr Shevel in 2013 and left the consultation in tears. After suffering with clusters for many years, I stumbled across Dr Shevel on my local radio talking about his surgery and hope sprang up inside of me. I contacted his clinic and waited a few weeks till he came to my city. When I went to see him, he asked me what was wrong and I told him about my history of clusters. He seemed tired and uninterested and his answer was that I needed surgery and that it would cost round about R70 000 in total (That is our local currency) which medical aid does not even cover. No tests, no checking me out, nothing. I told him that I wasn't on medical aid and my family couldn't afford that type of money and he said a plan could be made. I will be emailed a quote. As I was in a cycle at the time, I asked him for a script for the medication that my neurologist normally gives me and after I had told him, he said he needed to read up on Verapamil and will email the script to me. I saw him on the Friday and only received the scripts on the Monday. For someone that 'knows' the pain that we go through, there wasn't much urgency to get the script to me and I suffered with many beasts that weekend. (Still have the emails btw) Anyways, I received the quote which I declined and promptly received a call from the clinic offering a smaller surgery at a cheaper cost (About half the price). Apparently they really wanted to help me. I declined this and went to see my old neurologist. When I told him about the surgery, he said that I'm not the only person that has been fooled. Dr Shevel - Your procedure may or may not work but I will never forget the consultation that I had with you. Yes, you may help thousands of people but you didn't help me and your lack of empathy was soul crushing. I am so grateful to people on sites like this that look out for one another and can identify with the pain that we all suffer with. Verapamil has helped me keep my clusters in control and this past week I went for my Vitamin D3 blood test for the first time and my doctor found that my level is very low. Today I started the D3 regimen and that's all thanks to sites like this.
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  2. Siegfried, Because I suffer from both Migraines and CH it took 10 years for my doctor to diagnose me with CH. All my symptoms were migraine symptoms. It wan not intil I went to an appointment and my doctor noticed that I was sweating a little and he asked me what was wrong. I told him that I had a kidney stones. He asked me how I could drive and function with kidney stones and I told him that they are nothing compared to my headaches. He started treating me for CH and I went from headaches 3 to 5 days a week to 1 or 2 per week. My abort of choise has always been Zomig. My insurance at the time would give me 72 for a three month period. I would runout before the new prescription would renew. Long story short, my headaches were craving Zomig and if I did not take it I was in a consistent migraine cycle and wold get CH events also. I was at my wits end when I found Cluster Busters. I asked about busting, O2 and had to try something because I could not live like that any longer. I stopped taking Diltiazem Zomig and Percodan for 5 days and started the busting process. It saved my life! Now days I only take Zomig when I am somewhere that will not allow me to use O2 or if I am not having much luck with O2. life is good now! I can go a few days or even weeks pain free. I know most of my triggers and the ones I can avoid i do and the others I deal with. This site and its great people have helped me more than words can say.
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  3. Hey All, Thank the money grubbers at photobucket for the missing photos of the Redneck Reservoir Bag. Here they are courtesy of imgur. I used white electrician's tape to make the gas tight seals around the Coke bottle and oxygen tubing. You can see the Duck Tape that seals the open end of the kitchen trash bag. You can use a box cutter to cut the bottom off a plastic Coke bottle. This will become your mouthpiece. Remember to keep the bottle top. These things are amazing. I have a $500 oxygen demand valve and the Redneck Reservoir bag has zero resistance during inhale... Not so for the oxygen demand valve. You construct the Redneck Reservoir from a clean Kitchen Trash bag. Start by cutting the oxygen tubing from the mask end of an old disposable oxygen mask. Insert the cut end through the small hole cut in the corner of the closed end of the trash bag and tape with electrician's tape. Make sure the bottle cap is on the Coke bottle and screwed on to prevent any loss of oxygen. Insert the Coke bottle through the hole cut in the other corner from the inside of the back and tape with electrician's tape for a gas tight seal as illustrated in the photo. Put a strip of tape around the middle of the bottle. This becomes your handle. When the oxygen tubing and Coke bottle have been sealed, place the open end of the trash bag on the kitchen counter and use some masking tape at both ends of the opening to hold the open end straight. Fold the open end of the trash bag over at least an inch then seal with a strip of Duck tape for a gas tight seal. To prepare the Redneck Reservoir for use, connect the oxygen tubing to the barb fitting on your oxygen regulator and make sure the Coke bottle cap is on securely. Open the supply valve on the oxygen cylinder then set the flow rate for 5 to 7 liters/minute until the Redneck Reservoir bag in almost full, then turn off the cylinder supply valve. Check for leaks. You can patch them with the electrician's tape. Your Redneck Reservoir bag is ready to rock n roll... The procedure for use of the Redneck Reservoir bag is relatively simple... Edited to add... Drink an 8 oz glass of cold ice water before starting this procedure. It helps to drink it rapidly through a straw so you get a mini brain freeze. If there's no decrease in the pain intensity by the 4th to 5th complete hyperventilation cycle or 4 to 5 minutes, drink another 4 to 6 oz of water. When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below, unscrew the bottle cap as you wheeze for three seconds, then place the bottle to your lips and inhale oxygen from the reservoir bag rapidly until your lungs are full. Replace the bottle cap asap after inhaling while holding the lungful of oxygen for 30 seconds. When the 30 seconds is up, hyperventilate for another 30 second then repeat the procedure above. A kitchen trash bag should hold 35 to 40 liters of oxygen so there's more than enough to abort your CH if you use the procedure properly. Rose, meditation is good during oxygen therapy... and it is best done after hyperventilating with room air as fast as you can for 30 seconds then inhale a lungful of 100% oxygen and hold it for 30 seconds... This is where you meditate.... Yes... you might get a little dizzy... I do on occasion... usually after too many Rum & Cokes... That said, I've never passed out hyperventilating with room air or the oxygen demand valve even though I wished that would happen to escape the pain... It never did/does... At the end of the 30 seconds holding the lungful of oxygen, exhale with a crunch then do another 30 seconds of hyperventilating with room air. 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 abdominal crunch and chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply from the diaphragm as fast 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 content. 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. You may even feel a slight chill across your back after inhaling the lungful of oxygen and holding it as the capillaries in your skin constrict forcing the blood deeper and allowing your skin to cool. Guess what??? the same thing is happening to the capillaries in and around your trigeminal ganglia where the CH pain is originating... The vasoconstriction is part of the abort mechanism that stops the CH pain and ends the CH attack. Rose, if you sing the 'Hallelujah Chorus' from Handel's Messiah at Christmas, you have the breath control to use this method of oxygen therapy as there are several places where you need to inhale a lungful of air in less than a second in order to maintain the tempo... This procedure is not for Bo Peep, but rather for the Wolf who Huffs and Puffs to blow down the pig's house of sticks... In short you huff and puff like a big dog if you're doing this oxygen therapy procedure properly... The meditation comes while holding the lungful of oxygen for 30 seconds... If you're good at this and you will be with a little practice while pain free before your next hit, you'll feel the CH pain start to drain away on the 4th or 5th cycle... Why hyperventilate during oxygen therapy? The answer is simple once you understand a little about respiratory physiology... For starters, hyperventilation means ventilating the lungs more and faster than normal. What this does is blow off CO2 faster than your body generates it through normal metabolism. Once you've reduced the CO2 content of your blood, a few things happen... Less CO2 dissolved in the blood means less acid as CO2 dissolves in water to make carbonic acid... that also means the blood becomes more alkaline (the opposite of acid) and this elevates blood pH - a measure of acidity. The elevated pH and lack of CO2 are detected by chemical receptors in the aortic arch and brain. These chemical receptors in turn signal the lungs to slow the respiration rate, the heart to beat more slowly and capillaries throughout the body to constrict (narrow). All this happens to slow the flow of blood to the lungs in order to allow the CO2 level to rise back to normal... However, as we are intentionally hyperventilating, the lungs keep pumping out more CO2 and the pH goes even higher until we inhale the lungful of 100% oxygen. At this point the elevated pH causes blood hemoglobin to dump CO2 rapidly as it passes through the lungs. The elevated pH also cause blood hemoglobin to have a greater affinity for oxygen so the blood hemoglobin uploads more oxygen than normal creating a hyper-oxygenated blood flow to the brain. The low CO2 and elevated pH cause capillaries in and around the trigeminal ganglia to constrict. This vasoconstriction coupled with the hyper-oxygenated blood flow is the basic mechanism that aborts CH. If you follow this explanation this far you'll see that it is impossible to pass out while hyperventilating... Your squash (brain) is being loaded with more oxygen than normal and this will keep you wide awake... What happens after the CH abort? Simple... we start breathing normally and this allows the CO2 levels to rise and the oxygen levels to drop back to normal... All this happens within a minute or two after you stop hyperventilating... There's one more thing to remember... Oxygen therapy is only an abortive and not a preventative.... Accordingly, your next CH will usually hit right on schedule so you'll need to go though all this again. Some CHers complain when the pain free period ends and that this method of procedure isn't worth the effort... To that I say, balderdash! Seven minutes is the average abort time using this method of oxygen therapy. When you consider the average CH attack lasts anywhere from 30 to 90 minutes... 23 to 83 minutes of pain free time is a very good deal compared to the alternative... Rose, check you PM inbox. I've left you some additional information to discuss with your PCP or neurologist. You'll find my PM by clicking on the envelop icon in the blue border at the top right corner of this page. Hope all this helps. Take care and please keep us posted. V/R, Batch
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  4. No, NO, a thousand times NOOOOOO on this bozo. One quote says it ALL...."said he'd have to read up on verapamil" THAT is standard treatment.... for YEARS!!!....any competent headaches specialist (and many neuros or even GP's) would be all over that script. Sheesh...this pisses me off..........follow the money
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  5. It is very common for CH cycles and frequency to change. I have changed from chronic to episodic more than once, cycle length has changed many times. I'm chronic now and find it almost easier! My attacks seem easier to abort when chronic. Also, I can have a cocktail with no effect. When episodic that is not possible. Oxygen is my #1 abortive, I stop up to 97% of my hits with O2 only. Used it this morning. They posts above are giving you good information. Anything we use to stop an attack must be used as quick as possible. Waiting to see if it's a bad one can result in failure to abort . The fight is our own so we have to take charge of our own treatment.
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  6. After thought here Kris. Have you seen an Opthalomologist? I mean the real eye doctor, now the one who just fits glasses for you. It might be a good idea if your insurance will cover it. Since you have other issues with regard to your eyes, I would definitely suggest seeing one. I have Wet Macular Degeneration. It strikes the center of your visual field and blurs it out completely. Caused by an over growth of blood vessels in the macular. I have been seeing a Retinal Specialist for it for about two years now. Well, I went in one day with blurry spots at 10 and 12 on the clock in my CH eye. That eye had not suffered from WMD. He announced that that particular type of WMD comes with migraines!! Oh happy day. So, while it is billed as one thing, headaches can cause vision loss too. Sucks. So, I encourage you to see a specialist for you eye. You need it so badly!!! I would hate for that to get left by the wayside in your search. I had never heard of it until this summer. Hopefully you still have an eye specialist in your arsenal of doctors.
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  7. Kris, welcome you are in the right place for a wealth of information. 1st do not despair or give up. You made it this far. Tomorrow is a new day. This site can help you make an informed decision on some different approaches to different types of ways to teat your headaches. 1st. If you have not yet gotten a prescription for oxygen with a non-rebreather mask and regulated at 15 litres per min minimum. Another way is a Gentleman named Batch who has found that his D3 treatment (regimen) is a very effective way, And last alternative treatment. All ideas, are your choice. But have proven to be effective for many of us. Please read, read and read and then read some more. Don't hesitate to ask, a search bar is a valuable tool, as well as the main page, can guide you Pain-Free Wishes
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  8. Good points Jon... except I would take it a step further and make an anonymous call to the city health department and report the problem... Raw sewage fumes are a very real health hazard! V/R, Batch
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  9. I believe we are all equals here. No one is better or worse. If you have survived one attack, it's one too many. I don't think anyone's resume is better than anyone else's in my opinion. Chronic or episodic. We as survivors have all had some very low dark days where we didn't want to be here. This thread isn't about the dark days because no one usually wants to talk about that. Id like to start a positive post thread OR positive tips and thoughts on what got us through it. What got us through those dark days, why we chose to fight another day. I'm doing this thread in memory of those who lost their fight. I don't really want to emphasize on the bad. But the positive. Perhaps some of us out there are going through some really dark days, months and years right now and could use some encouraging words to uplift them and know that they can keep moving forward. Let me start....and let's keep this going....and PLEASE be respectful of those with faith or without. It is what helped that person so let's not be judgemental. Speak wiith love. ***************************************************************************************************************************************************************************************************************************** Tomorrow is a new day, always remain positive no matter how bad it is, you have survived this far ! You are a warrior, a survivor and you matter. You are important, Have value and I am so glad you are here ~Tom T~ *****************************************************************************************************************************************************************************************************************************
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  10. Episodic and have stayed on the D3 on maintenance dose based off my blood levels. Absolutely convinced it has also helped with my years of joint pain and arthritis. I have been able to reduce my intake of OTC anti inflammatory medication by 80-90%.
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  11. thank you....and I'm already seeing a difference
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  12. When I started the D3/Mag/Calcium last year, my restless leg syndrome has all but vanished while I have been off cycle... I am convinced the D3 regime is what has helped it.. Nothing worse than 3 CH's a night with restless leg syndrome it between arghhhh..
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  13. jaja, I have some experience with amitriptyline and naramig resulting in SS. SS wasn't funny at all I couldn't use my arms, muscles just dead. Or waking up in the morning in the middle of the living floor (I didn't made it to the bed the night before but there is no memory of what happen...) having gone to a doctor about this, this Ass told me YOU ARE NOT SICK you know? Do you know most people coming into my office really do not need any kind of meds... Stoping the one or the other med did immediately (one day or so) stop the SS syndrome but yes, this condition gave me fear. Seriously watch out and carefully check every new med taking.
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  14. Hi Mike...sorry you have to be here...but you'll be glad you are. Sounds like you need a new doc... a HEADACHE specialist...not just any neuro will do. I say this because that' a bad cocktail you're getting. Propanol is basically worthless for CH...it works somewhat for migraine. 80 mg/dy of verapamil is ridiculously low...so also worthless...most find the sweet spot to be 480 mg/dy taken in divided doses (immediate release is better for many vs extended release). Some go even higher...I used to take over 1000 mg/dy when in high cycle. Some have found success with Topomax...but the side effects are life altering and most stop. I couldn't function mentally at only 100 mg/dy...can't even imagine what 200 would be like. Caffeine containing energy drinks (minimum 100 mg caffeine AND 1000 mg taurine) taken at the onset of hit (preferably COLD and fast) is an effective abort for many. Any brand will do...I get mine at discount grocery stores for about $1/can...red Bull is the most famous but has a relatively low amount of caffeine/taurine and you are paying through the nose for their advertising. Eliminate all caffeine during the rest of the day....allows the energy drink to have a bigger punch as the body has not adjusted and therefor damped down the response. We all love us some O2...glad you got that going for you....Zomig NS (5 mg) is my abort of last resort when all else fails...effective 99% of the time for me....damned expensive tho and the insurance bastards make getting enough difficult. Look into the Vitamin D3 regimen (sorry I can't post the link...my wifi is wonky) but I'm sure someone else will post for you. Best Jon
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  15. Jerry, Many thanks... My second best birthday present came from my wife when she said "Go buy a new spinning reel" after looking at the reel I've taken to Alaska for the last 6 years... I've washed it daily with fresh water while fishing and kept it well oiled... but the elements and continued use have still taken their toll... so I ordered one of the best with a stainless steel body and internals. It will last a lot longer than me.... (I didn't tell her what it cost). My best birthday present came from my daughter on 22 August... Orrin Gustav... 7 lb 8 oz... Our 8th grandchild. My daughter has been taking the complete anti-inflammatory regimen with 10,000 IU/day vitamin D3 for five years, so Master Orrin, like his big sister, Fred (Winefred), was bathed in maternal vitamin D3 since conception... A flawless pregnancy, flawless delivery, a very happy healthy mother and a very healthy baby boy... It doesn't get any better... Take care and thanks again. V/R, Batch
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  16. Thank you, Spiny. My vocabulary is growing daily. I'll do some reading on "shadows". I'm definitely keeping my appointments. I want to figure this out. Thanks for the tip with the pupils. I'll give it a shot
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  17. My wife used to work at the clinic I go to about 4 years ago so we know a lot of people there, and I've known my doctor for probably 5 years. If I show him good information I think he will take the time to look at it. Getting an appointment is difficult because he is usually booked two weeks out. I wouldn't see anybody else at that office, it would be a waste of time.
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  18. Awicher...hiya and welcome...you're in the right place....and aint no such thing as a "rant" in clusterville...we all been there 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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  19. Thank you guys for the information. I really appreciate all the work everyone does here to help people figure this thing out. The shocking lack of public awareness to this condition is really pretty amazing. I was shopping neurologists this week looking for the right doctor and I would ask the schedulers who they had who specialized in treating cluster headache. And of course the response every time was "well all of of our doctors can treat headaches." And I then very politely told them that was not what I asked. Finally found my way to the recommended doctors list here and found a neurologist that had confirmed positive experience with this. Of course he can't see me until the end of October. I was originally going to go to my primary who diagnosed me 4 years ago and go back on verapamil which worked pretty well for me in past cycles, but in the last year or so I have become more wary of doctors and there obscene over reliance on prescription drugs and would like to avoid them if possible. Things like oxygen and vitamins sound like a far better way to go if they work. Should I see my primary and just bring him the information he needs to get me the right treatment. Seems ridiculous that people with CH literally have to educate their own doctors in order to get appropriate treatment. When I was diagnosed initially, there was no discussion about the various methods of treatment. It was verapamil and imitrex. End of story. I guess I was lucky that my GP was able to identify it at all since he had a patient that also had CH so he was at least a little familiar with it. I have a neurology appt on October 25th, but in the mean time I should probably see my Primary and do a test for vitamin D and try to get a script for oxygen, yes? If he will do it that is. I have heard people have had problems getting GPs to prescribe it. They look at everything through the "we have a drug for that" prism. Yea, I don't like doctors very much. This was kind of a rant, but thanks for listening.
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  20. I would say yes. Not as quickly of course. Try an Energy Shot, cold, and slam it down on your way to the O2. You can hyperventilate on the way - force out the CO2 with major exhale and add a crunch. Like doing a breathing test if you have ever had one. I'm nocturnal as well. I wake up, with that 'What?' feeling. Then it starts to ramp and I head out for the caffeine and O2. Takes oh about 15 seconds to decide!!! And I have not had my O2 fail me yet. Take longer? Yes.
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  21. Thank you guys for all of the information I am very hopeful that me and my care team can get these under control. First positive outlook I have had in a long time was meeting with my neurologist once he saw CH in my chart he immediately went to business with what we were going to do to try and manage mentioned several studies that have shown promise in treating. I can honestly say I'm glad I ended up with him because he seems very knowledgeable and on top of things he has even contacted me yesterday and today to see how the attacks have been since nerve block and since I have seen some improvement he squeezed me into his schedule to do two more of them 72 hours apart. I won't lie since this last cycle started I have lost my job due to the debilitating pain I am in daily am on the verge of losing my significant other i honestly had lost all hope and was ready to give up. I'm glad a family member found this forum and recommended it to me I'm starting to feel like there is hope that I may one day be pain free and get my life back. .... Update the beast is back and angrier than ever after two days relatively mild with both attacks and pain last night he reminded me that he will not go easily between the hours of 12-6 am I had a total of 4 occurrences of him showing his ugly face pain levels ranged from a 6-8.5 at the worst. Unfortunately o2 is not scheduled to be delivered until this afternoon. Thankfully my neuro already had me on schedule for this morning to do another nerve block so hopefully this one provides me more lasting relief
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  22. My daughter, a smoker, was terrified at first of having O2. Now, she smokes practically right next to her tank, as she's been doing for five years. Not while using it, of course, but the rest of the time. Not recommending that practice; just agreeing with spiny that if you don't do anything completely crazy your risk is minimal.
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  23. All the evidence I need is in my head ... or rather ISN'T anymore !! ... for now anyway. I do hope this is a step in the right direction. The thought of busting is scarier than the next attack to some people and that is if they can even acquire the medicine. Seeds may be the answer but even that is daunting for some folks. Seems we are programmed to look for the answer in an easy to swallow pill. That would be a dream but the cynic in me feels big pharma will find a way to make a cure tough. Anxious to read the study results
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  24. The psilocybin study currently underway at Yale Medical School, long lobbied for by ClusterBusters, is going to give us some kind of hard evidence.
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  25. Don't give up. Keep calling around for oxygen and have your doctors office call the most receptive oxygen supplier. If all else fails, get a welding tank. I was hesitant to bust but did and it has been amazing. Look into the seeds. Many of these things seem crazy to consider but desperate times call for desperate measures. I asked many doctors about "busting" and treatment alternatives and they all like to use the word "anecdotal" when describe the success rates. Until we get some serious funding and legal changes, everything result we have will be anecdotal but the fact remains, many people have had dramatic successful results. Stay strong. You will figure it out and it will get better. I was on the verge of the "ultimate solution" a few months ago. I was in tears daily. Folks here talked me off the cliff and I kept eating, learning and coping. Now I virtually pain free with minor occaisional hits and shadows. There is hope. Been your own best advocate but be sure you are 100% you are actually treating CH and that there is nothing else going on. Good luck.
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  26. Welcome Kris. Pile on the questions. What type of schedule do your hits come on? I mean, do you know when they will hit or is it more random? Have you O2 to abort with? Are you using a non-rebreather mask with your O2? What meds are a failure? Have you tried caffeine at the start of a hit? Many on this board have abandoned pharma for natural healing methods. Not that we don"t support those who find relief there, we do. Just so many of us have found that in the long run, they don't work. What makes you suspicious that you have something other than CH? It is possible of course. Just wondering why you suspect. A normal MRI is what is found in CH. No physical cause to be seen there. ATB
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  27. Hey Greeneyes, As you appear to be responding to this regimen, I would continue the accelerated Vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for another four to five days along with the rest of the anti-inflammatory regimen. This is a safe and effective way of elevating your serum 25(OH)D up near 80 ng/mL where at least 83% of CHers experience a significant drop in the frequency of their CH or a complete cessation of CH. Poping and chewing the 50,000 IU of vitamin D3 softgels between your back teeth and swirling the contents under your tongue for 5 minutes without swallowing will help in absorption... I do this frequently during my 25(OH)D burn down tests where I stop taking vitamin D3 until my CH return... I'm a chronic CHer and take an average of 15,000 to 20,000 IU/day vitamin D3 along with the rest of the anti-inflammatory regimen. I've also maintained an average 25(OH)D serum concentration around 140 ng/mL for the last three years. Yes, I know that is above 100 ng/nL.. I also know that the 25(OH)D lab test results are a very poor indicator of vitamin D3 intoxication/toxicity... If we were to equate a high serum concentration of 25(OH)D to vitamin D3 toxicity, there are several RCTs indicating the concentration would be well North of 200 ng/mL. My PCP is comfortable with my 25(OH)D being this high (It's been over 167 ng/mL) as he has a copy of the anti-inflammatory regimen treatment protocol so knows as long as my serum calcium stays within its normal reference range... and it has... there's no real issue with vitamin D3 toxicity. As the CH beast is still jumping ugly after a week of 50,000 IU/day vitamin D3, I would start a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg/day... If there's no joy at this dose and the CH beast is still jumping ugly, bump it to 50 mg/day. Take care and please keep us posted. V/R, Batch
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  28. I do seem to be having some positive response since starting the loading schedule over a week ago. I had to order the mature multi but have been taking everything else. My last really bad atttack was last Wednesday night (lasted about an hour). I still have had the pressure, stabbing pains, and burning off and on throughout the day(most only last a couple minutes....except today I have had it since last night very dull) but my last 3 attacks have not been as high on the pain level and have only lasted 10 min. I'll take what I can get. It's better than getting them everyday...multiple times a day... less than a week to go before I finally get in to see the neurologist.
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  29. Yup...smells can at least trigger a hit...not sure about cycle. Some folks where I worked thought I was NUTS because if I caught a whiff of welding on galvanized metal (zinc) I would bolt from the room like a crazed rabbit (with no explanation)...it was a sure hit odor for me. Re your work situation...wow...it sounds like the causal attitude is...yeah, there's this pit....and,oh, some sewage gas.....If they won't respond to your plight the only thing I can think of is you gotta organize your fellow workers (are you in a union?) and descend on HR for relief. That's the kind of thing that can be fixed....no one except Ed Norton should have to deal with that. Never mind the headaches...it's a quality of life deal and the definition of a "toxic" or "hostile" work environment............... Best Jon
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  30. Good thinking! That'll give you a reasonable test. You know what regulator and mask to get? Don't buy the regulator at Airgas -- about 3x as much $ and might not have the barbed fitting you need for the mask tubing.
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  31. Hi Mit12, From what i could read from your other posts in this forum I have exactly the same as you. With me migraine always start with an attack of mild intensity between 4 - 5 am. Always the same time. By the time I get up however, the headache is gone and I can function normal. But if around early afternoon I start to feel my right ear glowing and a slight pressure on my eye followed by slight dizziness and when the nausea and aversion for light start to kick in its time to go into a dark room in my bed and rest. But then the intensity is gradually increasing and increasing. The pain behind the eye and on the temple get so excruciating that it feels like someone is cutting with a glowing scalpel in these nerves around that area. The eye start to get red and I get a running nose. Stay in my bed has now become impossible and I get up and walking around very agitated. It happened a few time I passed out from the intensity of the pain. After an hour the pain goes away and in 50 % of the cases, the migraine also goes away but if it does not, such an attack can come again as long as the migraine takes (usually 48 hours). Now I always have used Zomig to abort the attacks and that has worked perfectly but I was taking Zomig too much for my liking and so I decided to visit a neurologist specialized in migraine in the University Hospital here in Belgium. After telling my story in all detail, he came back with an attestation that I was diagnosed with cluster headaches during migraine and the prescriptions for oxygen. I was very surprised because I have never considered CH. He told me that this is rare to have CH like this but that it is a known pathology. I have the two really linked together. In my case CH will never appear outside a migraine attack and on the other side, if I let my migraine untreated, cluster events will always appear. To my big surprise, the oxygen works like charm ! To be short, my Zomig use has gone from 4 pills a month on average to zero ! Oxygen seems to work best after the first morning attack has eased. If I can then take 15 min oxygen, its all gone. To compare both cluster headache and migraine, none of them is for the faint of heart. I fear cluster headache for its extreme pain which is very sharp and very concentrated on one point and extremely intense. Migraine is more a throbbing and pushing pain far less intense but migraine can one make so miserable and ill because the entire system is gradually shutting down and worse, if untreated, a migraine attack can take up to 72 hours without any relief in between.
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  32. Hey ClusterSpouse, Sorry for the delay in responding... Just got back from a 10-day fishing trip in Alaska... Great question and thank you for being a super CH supporter. The fastest and most effective way of elevating serum concentrations of vitamin D3 and its first metabolite 25(OH)D is by taking it sublingual (under the tongue) or buccal (inside the cheeks and lower lip). This is where Vitamin D3 sprays and liquid formulations are king as they bypass the GI tract passing directly into the bloodstream through the mucosal membranes in the mouth and this results in better absorption. You can find an excellent study on liquid and spray vitamin D3 at the following link. https://betteryou.com/health-matters/wp-content/uploads/2016/10/DLux-Cardiff-University-trial.pdf As the anti-inflammatory regimen is essentially "a way of life" for CHers that's taken daily year round, my only issue with the liquid and spray vitamin D3 formulations is cost. The most effective liquid/spray vitamin D3 are microemulsion preparations that cost considerably more than the liquid gel caps @ 6 cents/5000 IU. I've found that popping/chewing 25,000 to 50,000 IU of vitamin D3 liquid soft gel capsules and swirling the contents under my tongue and between my cheeks and gums without swallowing for 4 to 5 minutes works effectively to get my CH under control during my "25(OH)D burn down" tests to see how long it takes for my CH to return after stopping my vitamin D3 intake. Hope this helps. Take care and please keep us posted. V/R, Batch
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  33. Same test. Results get reported in different formats. The calculator here says it's 51.7 http://www.endmemo.com/medical/unitconvert/Vitamin__D.php Same here: http://www.vitamindservice.com/node/91 84 is the average level that Batch has found in his research for people who have become PF, so you could consider it a target, but you might need more (or less).
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  34. Mit', this is a question you might want to also post at the Facebook Cluster Headache group. More chance of reaching someone with the experience your interested in.
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  36. I suspect that this is a question you should ask Batch directly. First time I recall hearing of the spray, and I do read pretty much every post. Batch is great at answering PMs. Go to the envelope icon at the top right of the page, open it, and put Batch into the "To" line. Maybe there will be more discussion of this here, but if not, I'd sure appreciate it if you let us know what Batch says.
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  37. Thanks Bob. It makes a little more sense now. I thought that I was having some strange migraines because they hurt in the exact same place came at the same time of day but did not hurt as bad. Spiny, I have been on the D3 program for a while now and I tend to agree. Thanks for the replies.
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  38. Aside from one or two instances of extreme pain (which might or might not have been at CH-level severity), you have virtually no symptoms that would lead to a CH diagnosis. No runny, red, or puffy eye or drooping eyelid, no nasal congestion. Vertigo/dizziness are not symptoms related to a CH diagnosis, although a very small number of people with CH have them. (They are different things: vertigo is feeling like you or the room are spinning; dizziness is feeling woozy, lightheaded, etc.) Your attacks are not always at the same time of day. Advil doesn't alleviate CH pain; it has no effect on it at all. As we have discussed, virtually everyone with CH is too agitated during an attack to lay still or sit on the floor. It is highly unlikely that melatonin + vitamin D would account for the experience you just had. (Migraines, and other types of headaches, do sometimes wake people up at night. Some people with CH are not awakened during the night by attacks.) You seem to have something going on, but I can't see a sensible doctor diagnosing it as CH. I say all this because I worry that treating it as though it's CH as you are doing, with seeds, D, melatonin, energy drinks, etc., might somehow be making it worse if it's not CH. I know you're trying to get to see a doctor, but that really is your most crucial step right now.
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  40. Moderators and Admin (Thathurtsmyhead) are your fastest source. I can handle it and I am here almost every day. So, give me a shout out.
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  41. WOW... I thought it be a little better than that... the tank I rented last year (now out of business) was at least 4 ft high (or more) but I don't recall the cf of it.. mesquit thickets damn, all up hill I am sure yes, I know the rules about the welding tanks (read enough here to pick that up), I did boiler work for alot of years, so hopefully I got enough knowledge to squeeze by. I am 58 years old, but I will gladly drag it through any thickets.. I have had cycles with and without O2, I don't care how heavy it is lol
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  42. Ummmmm...YES!!!!!...there aint no damn rule says we gotta deal with KNOTHEADS...........................................................................
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  43. Hi green, we all experience the beast in different ways...but the nerve pathways are quite clear and unilateral...top of head....temple...eye...teeth. mine started in teeth.... and involved all of those eventually. my prince of a dentist not only REFUSED to pull what he described as perfectly good teeth...but researched and DIAGNOSED me with CH when multiple GP's couldn't. you are describing a variation on the theme...the "good" part is that you know what your "signs" are...and therefore can put into effect your well planned countermeasures! like O2, energy drinks, mayhaps verapamil, imitrex or better yet.... Zomig nasal spray, D3 regimen, trigger avoidance, busting, etc.......you'll find it all here....... best jon ps...drop the naproxen...the benefits are negligible...the dangers plenty
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  44. You should have no issue taking your nasal spray with you in your carry on I don't think. I would check with the airline before heading out though. If not, take your script with you. Many will take some energy shots in their carry on bag too, just in case. As urs said, hyperventilating can be a big help in slowing or stopping a hit at times. I would not use the bag though, as you want more O2 not the CO2 you exhaled. Just breath in deep and exhale with force. Repeat. It helps clear the CO2 out. If others are around, then do a long exhale instead of faster and with force. But inhale quickly and hold it for a few seconds. As for the Pred - I would start it the day before my flight. Then have a new taper pack for the return trip. Assuming that you will be there over a week of course. You normally would not want to take to taper packs back to back. But this might be a special case scenario. Not like you are going to be taking the stuff daily for your entire cycle. Sorry, that is all that I can think of at the moment.
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  45. It is mushroom season in coastal Mexico. You can get good quality medication OTC or other in Mexico. Most large pharmacies hire a doctor on staff to write prescriptions and the fees for that are nominal. My recommendation would be to drink TONS of water during your travels, and to keep your prednisone handy. Avoid all alcohol. Have fun!
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  46. This study has been opened to everyone in the US, not just residents of NY and CA.
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  47. I tried to book a room at the Embassy Suites today and the conference rate is not available for Friday the 15th only Monday 11- Thursday 14th and then for single days either the 16th or 17th. I spent 45 mins + talking with an employee there and ultimately booked at the Comfort Inn for $110/night
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  48. Spiny: Thanks my CH friend. I think I might have found the issue that "may" have triggered my CH after 13 years. I'm still a smoker (I know I need to stop) It dawned on me that I changed from Parliament Lights to Marboro "Red Label" about the time my CH started again (one week later) I decided I really need to stop outright. I had a serious case of Bronchitis about 2-3 years ago & my doctor gave me Predisone & it worked within hours! It's done the same for me with my CH (day 5 now) I'll ask for a couple of refills when I visit my neruo. in a couple of weeks. I'm hoping that I go dormant again. From what I gather Predisone isn't the best for your body in general, hence the tapper. But...I'll take it if it get's me out of pain. Be well Spiny.
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  49. Shay, thank you for being a supporter!!!! I would suggest that you (or he!) start a thread in one of the other forums here (Share Your Busting Stories is a good one, even though you probably don't have a busting story to tell). Let us know -- as specifically as possible -- what he's doing for his CH (meds with dosages; other treatments); what seems to help and what doesn't. There are likely to be a bunch of things he can do to make his situation better. Isolation is very common, with many underlying factors, but knowing that his CH is more manageable is definitely a very good way to start changing that.
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  50. I am going this year, saving account be damned. I have never in the 20 years i have had CH spoke directly to another person who also had it. Such a simple thing I believe will have a profound effect for me....I need to know that you all are real people.
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