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  1. MAPS notes Just finished attending the last lecture of the Multidisciplinary Association of Psychedelic Studies (MAPS). Coined Psychedelic Studies 2017 this was the largest (to date) gathering of professionals, academics, lay therapists and those with a life long interest in the benefits of psychedelic modalities. There were researchers, clinicians, advocates and enthusiasts sharing data, experience and advice. Among those at this robust and vigorous event was Bob Wold representing Cluster Busters at an informational table and Brendan Burns sharing his personal story and knowledge. Emmanuelle Schindler presented the clinical study design and rationale setting the stage for presenting solid data at future meetings. Our cause was well represented. Certainly our situation is a bit one off from the mainstream but it is important we don't let the avant garde of this exciting movement forget our interest as psychedelics rapidly reenter current therapeutic options. I attended many of the talks and wish to provide a high level summary of some of the talks that may be of interest to those considering alternative cluster treatments. The videos of specific presentations are going to be available on You Tube and searching MAPS with the presenters name should guide you to the source. The program should be on the MAPS sight. No claims are made of unerring accuracy, lack of bias in interpretation or completeness. My best is all I have to offer. Stanislav Grof opened the lectures and included his work on breathing techniques to produce a psychedelic state. He is a well loved researcher in LSD psychotherapy prior to making LSD illegal and developed these techniques in the void left by draconian legislation. Many workshops have evolved based on his techniques and components are reminiscent of what Batch has suggested. There was much about herbal roots from around the world I don't want to spell but since we have limited input on things other than LSD and psilocybin I leave their usefulness to inevitable discussions. MDMA got lots of attention but no data for us. Sounds like great stuff for the right application. These will eventually crop up in one form or another. I will also reserve judgement on the large number of folks bemoaning their migraine experiences to Bob. The guy suggesting a stem cell transplant fixed his clusters will go on the shelf for now, Heaven points for Bob. Psilocybin was discussed in a significant number of presentations. The context was in death and dying, addiction, PTSD and pharmacology but the message was loud, clear and repeatable. The use of psilocybin in these context is safe, effective and long lasting. This included measures of anxiety, mystical experiences, squashing suicidal ideation and overall improvement in sense of self. Trait measures of forgiveness, life meaning and faith maturity are amplified in a sustained way. Psilocybin was given in a safe set and setting and included psychotherapy and counseling. Look up work at Johns Hopkins and NYU. Neuroimaging studies report pretty consistent findings. There is the well known interconnection throughout the brain on psilocybin. Decreased blood flow is seen in the Cingular nucleus. This results in slowing or blocking the brains inhibition of data inflow allowing for freer communication. There is desynchronization of the posterior Cingular nucleus and decreased inhibition. Basically psilocybin is believed to inhibit the inhibitor and allow free flow of information. Interestingly the brains Default Mode Network (DMN) decreases with immediate dosing but in 24 hours and then increases in a sustained way for a long time. Similar changes are seen in experienced 1000+ hour meditators. Meditation showed similar findings to a dose of psilocybin 25 mg / 70 kg. The posterior hypothalamus is activated by psilocybin and this activity can be affected by hormones, genetics and inflammation. UW- Madison presented participants in a pharmacokinetic study looking at dose relationships and physiologic safety. It was a Phase I trial to establish safety parameters. It was very safe at all doses. There were 3 dose regimens given a month apart and dosing was based on body weight. 0.3-0.6 mg/kg body weight. So if you weigh 154 lbs your largest dose was 42 mg. That is equal to 6.7-8.4 grams dried shrooms. (4 grams dried is equal to 20-25 mg psilocybin). No adverse physiological events and the participants report sedate to wild experiences. They sought each other out after the study and remain bonded. The question of dosing by body weight or standardized dosing was addressed. Study's showed no difference in outcome measures related to body weight. The experiences where all over the place irrespective of dose and body weight. Seems you get what you need? Looking at bad experiences on meds (bad trip) demonstrated guidance through the event in a safe set and setting was effective. Most related the experience to be profound even if seemed negative to sitters while occurring. Good experiences and bad experiences were latter judged helpful. Look up the Zendo project on psychedelic harm reduction and study the tenants of safe place, talk through not down, sitting not guiding and difficult is not bad. The biggest impression was all the 70-80+ year old wandering around with extensive experience in psilocybin and LSD use. Of course these represent folks who see a profound benefit of these substances in their lives. They are healthy, intelligent productive folks with mind blowing exposure to these substances. A pretty good real life testament to safety.
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  2. Hello Jacob, most of the people on this site have been where you are now. In order to get the best advice/help please tell us about your back ground with treatment, a lot of people think they have tried 'everything' before coming here and that is not always the case. Do you have oxygen and know how to use it properly? if not please read up on it and check the files on this site. Are you currently taking any Dr. prescribed meds ? if so, please let us know what they are. Have you been diagnosed with cluster headaches by a doctor? There is nobody here that can 'cure' cluster headaches, but there are plenty of smart people who can teach you how to manage this awful disease and hopefully help get you some pain free time. I found this site about 4 years ago and it changed my life. Please tell us what you have tried, and what you are doing currently to try and manage the pain, and we will try and help you.
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  3. Welcome to the community Lewisjones! From some of your comments and the vernacular used, I'm guessing you're somewhere in the UK under NHS care? If so, Chf's advice regarding welding oxygen may not work for you.....however, under NHS guidelines, high flow oxygen is recognized as a front line treatment for clusters......contact OUCH-UK for help getting the HOOF form sorted out and whether your doc likes it or not, he's bound to supply you with O2. Dallas Denny
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  4. I knew it was a tincture...probably some or all of feverfew, butterbur, gingko biloba, kudzu...et al. Do you know that alcohol is a trigger for many clusterheads? There was a time when "3 drops" would have put me at kip 8 within minutes ...no such thing as a cure....if it works for you...great...I AM doubting it's general potential success...to put it freaking mildly. Do you understand cycle ends, have you considered placebo effect (doubtful for ch, but then......)...how often do you take unknown chemicals from unknown sources based on "I heard"? ...what's your history (episodic, chronic, cycle length and type, diagnosis, dosages of meds, attempts at modifying dosages, combinations, O2 experience (type of mask, flow rate, technique), experience with steroids (IV, taper, both?), caffeine taurine combo (energy drinks), cold and/ hot applications? Vitamin D3 regimen? Attempts on this forum or others to seek advice on these? There are folks here and ch.com will bend over backwards to help....all ya gotta do is sincerely ask. However, your very first post touts a wonder cure...you should have heard the eyerolls and guffaws...I did! Your offer does remind me of a 1975 Starsky and Hutch episode...."out of the good ness of my heart...my friend...the FIRST one is free". What are you charging for the second....hmmmmmmm?? I have no desire to argue with someone who has no credibility...so I won't...PFDAN.
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  5. Hi Blues! Well, I can identify with your frustration. Almost all of my hits are nocturnal. For me, they hit 15 minutes after falling asleep and run for 2.25 hours without O2 or an abortive. If you have a recliner, you can lie back in that to sleep if you keep your head above your heart. Also there is the pile some pillows on a table and sit in a chair with your head pillowed to sleep method. Taking Melatonin at 9mg up to about 20mg at bedtime can buy people some sleep. Trying those should buy you some rest. For many, a nap will set off a hit. Maintaining a steady sleep schedule is best. I understand being tired after a hit or ten. The idea of maintaining a sleep schedule seems impossible right now. What abortives do you have? O2? Imitrex? A bit of background can help. Have you tried slamming an energy drink at the first sign of a hit? It can be a big help. Please let us know what you take for your CH and if you have had a diagnosis and scans done. It will help us help you. I can tell you for starters that you need O2 and use the proper breathing method to abort those screamers!
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  6. Hi Shoog, Sorry I don't have much time for elaboration right now, I'll try to get to the point with my thoughts: Triptan spray: If you're tasting it you're probably "sniffing" while using it, a mistake most of us make unless instructed otherwise. I recommend researching the instructions for it. Last time I checked, it's just supposed to go up into your shnoz, with no sniffing, not used like an actual inhaler. Injections are widely known to work quicker, plus there's the major advantage of being able to use partial (but still very effective) doses, and stretch your supply / reduce your side effect risk dramatically 100% O2, as you'll be instructed on the use of here, aborts attacks well without side effect risk or blocking other treatments. Verapamil can work for some. More effective is "busting". It will sound crazy at first (well it did to me), but see the Harvard and (currently underway) Yale studies, etc., plus tremendous amounts of CH'ers who've found long lasting prevention relief with it, sometimes from a single dose, and you'll start seeing what a breakthrough it can be. There's a "D3 regimen" that some find relief from, and it shouldn't interfere with anything else you're throwing at the CH. You were discriminated against due to your gender, denied proper care, and left in unspeakable pain. That's horrible. Not that it was done intentionally, it was due to an old, stubbornly lingering misconception, but that kinda %&^$ has really gotta stop! -Jeebs (not female, but still outraged. My dear mama taught me about gender discrimination )
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  7. Interesting experience last night. As you know I was without o2 and freaking the heck out. I was terrified quite honestly. So at midnight I went to the Norton hospital ER in hopes they would send me home with a tank of o2. I explained to them I was not in serious pain, but would be throughout the night because I had run out of o2. Shockingly, the ER doctor understood exactly what I was facing and sent me on my way with a E tank to get me through the night. And I'm sure glad he did. So thankful. Worth the $200 bill I will get for the visit? Yep. Also, I want to clarify. I get my o2 from a medical supply and use your typical regulator for e tanks. Also want to clarify why this happened. A washer on my regulator was all worn and cracked and so when I got my early morning hit my tank was empty, so I had to endure a really bad one, then go into trying to get a replacement tank yesterday. Normally this would not have happened. Check your washers! Yes today I got 3 tanks and am all set. This will not happen again. Thanks again for the support. As for sleeping upright, etc. Doesn't seem to help me.
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  9. Several of us have been there...still are there at times. I wish I had some great advice for getting you through this. It is so difficult to explain the level of pain to those that have never experienced this. Do you have oxygen? Even when it doesn't help me much it can calm me down a bit. Hugs
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  10. What dose of Indomethacin did the ER doc prescribe? I have HC and and I had to slowly increase the dosing until I got to a point where it helped quite a bit, currently at 75mg 3 times daily. I still get pain but mostly not too bad. I take Ranitidine 75mg in the morning and tums during the day for indigestion if needed. Give the Indo some time to see if it works. At least this way you can determine if it is hemicrania or not.
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  11. The conference was definitely pretty awesome. I have to admit I missed a number of the talks because of an unrelenting migraine but did a lot of connecting with people that I had wanted to connect with. I'm really looking forward to working more with the Psymposia crew and I will probably be doing a couple podcast interviews with people I met at the conference. I'll let you guys know when I know more. I got a chance to talk to the guy Pebbles was referring to that said he got cured of his clusters from stem cell therapy. He was a nice guy that had obviously been through a lot but I am pretty confident he did not have cluster headache. He said that after some sort of nasal surgery he ended up with a cluster headache that would last 24-7. As most of us know, cluster headaches don't actually last that long so it had to be something else. It sounded to me like he damaged some of the same nerves that are involved in cluster headache, but essentially the case was more about nerve trauma. I doubt the success with the stem cell therapy for him says much for most cluster sufferers but who knows, maybe some of the people that end up here with a condition that mimics cluster headache (like that guy) could someday see this as a therapy for them. I know he got it done at some sort of pain clinic and it did not sound cheap. -Ricardo
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  12. Can you handle caffeine? If so, you might want to add in some guarana. it is a caffeine containing nut that is very popular in South America. For some reason guarana seems to protect against the gastric irritation that comes with Indomethacin. https://www.ncbi.nlm.nih.gov/pubmed/14669256 The caffeine might also help with whatever kind of headache you have and make the Indomethacin work a bit better. -Ricardo
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  13. I would suggest that you maybe get to a Headache Specialist for proper diagnosis. And ask your neurologist for the actual name, because 'Migraine on Steroids' doesn't tell you what it is. You need a full neurological work up, MRI, CT scan, all of that, because what you have may be entirely curable or, it could be something that needs immediate treatment. Please take care of yourself. Do the triptans help the headache at all? Is it only 1 headache that lasts for 3 days every 45 days?
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  14. Thanks both. Ah Pebbles , you got me wrong. I didnt mean such sites promoting snake oil or whatever, I really just meant regular boards on the same topic like this one here. Someone around the globe might have recently discovered something similar like MMs , D3 or whatever. Yes, this will make it onto here at some point if valid but it may take awhile. I am not interested in taking risks either and research is key as you say. Still and at least for additional theoretical input it may be there is new stuff around we haven't heard of (yet) due to a language barrier. As you say it is / will be bits and pieces but why not. Up to everyone themselves to consider if BS or an actual piece of the puzzle
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  15. As far as welding oxygen goes it's pretty straight forward. Purchase your own tank or rent from a welding supply company. The oxygen is produced in the same manner. When you purchase the oxygen you will need a "story", they won't knowingly sell you it for medical reasons. More liability reasons than anything. Tell them a buddy is teaching you welding, or glass blowing. You don't need any other equipment, just extra 02. Buy a regulator online or one at a tool supply store. Need one with a CGA 540 style regulator to fit a welding oxygen tank. Then purchase a non rebreather mask. This is a good one: http://www.clusterheadaches.com/ccp8/ Then check back and someone gave you best practices on how to use it. If your doctor can't give you a valid reason(respiratory conditions) for not using oxygen you should be fine.
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  16. Keyser, I think I get what you're asking more than others that haven't worked a remote job before. No worries. I worked from home for 8 years. Large portion was due to my CH. Here's a few things to think about that might help. Computer Docking station Monitor Internet (my employer paid for my high speed internet, $40 per month for maybe 4 years My employer had a budget and could have bought me a workstation desk for home, but I didn't need it. Make sure you get into a schedule of meeting with coworkers. Working away from coworkers and a supervisor 100% can create a disconnect in the workplace. Scheduling a weekly or monthly lunch or office visit would help a lot. Cheers, J
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  17. Well, here's the thing. It's not melatonin's effects as a sleep aid that lead to it being recommended. It's not to try to help you sleep through an attack. When people are in CH cycles, their melatonin levels are low. And melatonin is related to the regulation of the hypothalamus, which is considered by many to have a role in CH. And in some studies and many reports, melatonin reduces CH attacks. So it's the chain of logic about its possible physiological relationship to CH, supported by some actual research and experience, that's behind the recommendation of melatonin.
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  18. Junco, you have found a LOT of support here. While I am sorry that you do not see it that way, I see no basis for your being upset with people who have tried to help you. I hope that you find some relief and peace. No one wants to see their life slipping thru their fingers without really living. ATB
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  19. Hi Junco, I imagine it wouldn't be a bad idea to research a bit on the topic of schizo-affective and psychedelics, as last I checked (which was years back), even those who recognize the potentially therapeutic properties of psychedelics, recommend against them for anyone with a family history of schizophrenia (if that is related to schizo-affective..?). Also, CHfather isn't known for giving people a hard time, just the opposite in fact. He's well known for being non-judgmental, and for volunteering his time to help countless headbangers find their way to some relief, so when interpreting his words, I think that can be a good angle to come at them from.
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  20. Wow! Good for you (and that ER doc)! First time for that one. In my opinion, anyone with CH would be well advised to seriously consider the D3 regimen. It's basically good for you, and it affects attacks (weaker, less often, or eliminated) in positive ways for more than 85% of people who do it. End of advice.
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  21. Are you sure the tank was full? take the regulator off and just crack the valve on the tank for a second, should be high pressure escaping when you crack the valve...if not, the tank is empty.
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  22. Welcome Josh! Glad that you found us. There are a lot of things that you can do for CH. The first is to get a definite diagnosis from a Neurologist or Headache Specialist. They will likely order a scan - CT, MRI, or such. This is to rule out any other issues that could be causing your pain. Many of us have started out thinking that it was a sinus infection or dental problem. Some have had teeth pulled or sinus surgery before getting a proper diagnosis. Your PCP may or may not be familiar with CH. Most are not and you will need a referral. It sounds like CH. The main thing that you want is O2 with a non-rebreather mask and a flow of at least 15lpm. Preferably at 25lpm! You will find that it is your best friend when in cycle as it is the best abortive. The most commonly prescribed and effective medications are verapamil and Prednisone. The Pred is used short term until the Verap begins to work. Chers usually require high doses of Verap to get relief. Generally the short acting version is better than the Extended Release one. Likely you will start in the 240mg to 360mg per day range and work up from there. Imitrex is an abortive. It is available in pills, nasal spray, and injection. The pills are pretty useless for CH as they take too long to work. Injections work the fastest but you should not take more than 2 in a 24 hour period. Sprays are in the middle. In the meantime there are a few things that you can do for yourself. For many, an Energy Shot or any caffeine will hep a lot if downed at the first sign of a hit. Check the list of triggers that can be found in the Clusterbuster Files section. Alcohol is one of the main triggers and should be avoided. Sleeping can bring on a hit, but sleeping in a recliner with your head elevated above your heart can help with nocturnal hits. Many apply hot or cold to the painful area, whichever works for you. You can deep breath - emptying your lungs completely on exhale and inhaling deeply. This helps remove the Nitrogen from your lungs and get in more O2. Some put their feet into water as hot as they can stand it. Others swear by vigorous exercise. Keep a regular sleep schedule! Naps can often be a trigger. Read thru some of the Clusterbuster Files. They will give you a lot of info. The closed boards (Share your Busting Stories and Theory and Implementation) discuss alternative treatments. Ask questions! Others will chime in with suggestions for relief. Everyone here knows your pain. Know that you are not alone! We are here to help. ATB spiny
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  24. Coz, so sorry . . . That does happen, when shrooms stop working. It's not even all that rare. Sometimes they start working again, later in the cycle or in a future cycle. Of course, it's important to know that the shrooms you tried were not too old or otherwise compromised, and to be sure you are not using any medications that might block the effects of the shrooms. No idea what the situation in Cyprus is, but if shrooms stop working, many people find that a different busting agent will work for them. Seeds, paper, and others.
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  25. Hey I was there. Same story. You can get your life back there is hope. Read this whole site the answers are here the support is here. Read through the clusterbuster files and decide on a treatment you are comfortable with. People are here to help. Will they be cured probably not but you can find ways to get more of you life back.
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  26. G'mornin Nick! I've a good friend who's an Aussie clusterhead.....I'm sure he's in bed asleep right now buy I'll send him a message and see if he'll drop by and hook up with you. He's one of the admins of the Aussie facebook clusterhead support group so I'm sure he could put you in contact with other ch'ers from down under as well. Dallas Denny
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  27. Jacob, The 'breathing deeply' while you pace is likely the key to it helping. I do deep breathing as soon as I feel the hit. In deep and out with force and a crunch at the end. This has helped shorten O2 time and is really great if I am stuck in public with a hit. Lately I found out that I am not the only doing this and having it work. Our most esteemed Batch wrote about it recently. You are getting rid of the Nitrogen and that is what helps.
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  28. Finally! I have found way out! The medicine which helped! No more Cluster pain! I overcame the season which lasted for one year just in three pains! Sounds like a miracle but it is true. The cluster pains started in 2000. You know how it is. I have tried everything! The course of Prednisolone has damaged my health. Here in Post Soviet country lithium is also popular, I tried this too. Lithium just ruined my health, it limited my movements, I was handicapped and needed crutches, but the pain did not go away. Of course everyone knows the course of Verapamile, which I don’t even know why was invented . In any case for me it did nothing. I have tried breathing oxygen , it did not work. I have tried Sumatriptane and many others but nothing worked. I have given up and decided that this how I will live all my life. But then I heard about one medicine which is prepared only with natural ingredients. Of course I was skeptical at first, but I always try anything that can ease the pain! This are the nasal drops. A friend of mine recommended. I tried it and in one minute the pain was gone. I thought it was a coincidence that the pain was a false alarm. In two days pain came back. I again used 3 drops and in one minute the pain was gone again. I still could not believe. I have tried everything and have become very skeptical. I had to use it third time and it worked again. It’s been more than 2 years now without a pain! I gave this medicine to a friend who also suffers with cluster pains. He had to use it 5 times within a month, and he has not had the pain in seven months. There is a “Cluster Pain Center” in my country, which I am a member of, I know all other registered members who suffer from these pains. I was curious if this medicine really worked or it was a coincidence. I contacted all patients (there are 35 of us in the city). Only 27 replied. I offered all of them this medicine, 18 showed the interest. 12 people out of these 18 used the medicine and in all 12 cases it was successful. In my city there are 14 people including me and my friend who have overcome this pain. It is very simple – you need to use 3-4 drops on the side where you have pain, and the pain goes away in 1 or 2 minutes. I know what a wonderful feeling it is so I wanted to share. I have been on this Facebook Page for 5 years and now I can do something useful!!! I have bought this medicine in certain quantities (just to have some stash, I feel more confident this way). I have an offer – write me in private inbox and I will share it with as many people as possible, free of charge!!!. Try it and you will know that there is a relief. I just want everyone to know that there is a way out! Write me an address in the private inbox and I will send some from my stock, if it will help you as well as 14 people that I know, then there is a cure!!!!! So write me and I will send the medicine to as many people as I can just to try it out. Unfortunately, can’t promise more. I don’t have too much of it myself. I don’t need money – just try! It is made of natural herbs based on spirit. Try, you are not losing anything! If it works you will know there is a cure Email me: soundjadokar@gmail.com
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  29. Lewis', you are getting really bad advice from your doctor. He is responsible for the way you are suffering right now. For one thing, indomethacin works for hemicrania, but it never or practically never works for cluster headaches. So if it worked (or didn't work), there would be no confusion. And as I have said, sumatriptan tablets are useless for at least 85% of people with CH. Pizotifen (which I have not read of being prescribed to a CH patient before) is not even a first-line treatment for migraine (from Wikipedia, which is actually quite reliable regarding medical conditions: "it is usually not the first choice medicine for preventing migraines, instead being used as an alternative when other drugs have failed to be effective.") I don't know what to tell you, except that you need a decent doctor who gives a crap about your suffering. There are standard resources that every doctor has that tell him/her what effective prescriptions are for various conditions: If your doctor consulted that, you wouldn't be getting useless medicines. There is a list of recommended doctors as the second pinned post at the General Board. (The standard pharma prescription is oxygen to abort, injectable or nasal Imitrex for breakthrough attacks, and verapamil as a preventive. A doctor could also put you on a course of steroids such as prednisone, which often takes away the pain for a few days and serves as a "bridge" while the verapamil dosage is leveled up.) In the short run: Many people with cruel idiot doctors are forced to set up their own oxygen systems using welding oxygen. You could do that, particularly since O2 helped you in the ER. You should start the vitamin D3 regimen that's described in the ClusterBuster Files section. You could try melatonin at night, starting at 9mg and working up to the level that works for you. Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack: for many people, that will reduce the severity of the attack or even sometimes abort it. Some people find that putting their feet in very hot water in a bathtub during an attack helps them. Not having oxygen, some people find that sticking their head in the freezer or up against a full-blast air conditioning vent and breathing deeply can help. For the longer run, you should give busting some serious thought (read the numbered files in the ClusterBuster Files section). I hope some of the stopgaps help you, and I really hope you will find a better doctor.
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  30. 80mg x3 is a fairly standard starting dosage for Verap. The dosage goes up from there to as high as 900mg or so. Your GP did you a huge dis-service by reducing it for personal not medical reasons.. Adding the Trokendi XR is adding insult to injury. It is for Migraines of course. So, strike two for me. Yes, those side effects are awful. Don't think that I want glaucoma or blindness thank you. All of those symptoms should be reported to him!! They suck and can be dangerous. Especially the eye issues. It is an anti-convulsion medicine passed down to migrainers and then thrown at CH to see if it sticks!! I can't wait to read that you got a proper diagnosis and treatment with the Neuro! Just a few more days until you get some medical help I hope. Have you tried any of the suggestions given above? Please push for the O2 and take an advocate with you. Perhaps Mom, since she would have rescued you! Or someone who saw one of your attacks.
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  31. troller. making our site less than it should be. i vote delete this fool.
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  32. Sure does sound like CH. Everyone here will tell you that oxygen is essential for CH. For whatever reasons, many or even most neurologists don't prescribe it. I could go into the possible reasons, which include not knowing how to write the prescription, but you just have to be ready for that, and ready to insist as much as possible. Yes, bring an advocate with you. Here is the article from the Journal of the American Medical Association demonstrating the effectiveness of oxygen. Wouldn't hurt to bring it with you, or maybe even send it in advance to an assistant or PA. http://jamanetwork.com/journals/jama/fullarticle/185035 Yes, people with CH are remarkably strong (I'm not one of them; I'm just a supporter of a family member with CH). But the right strategies -- including serious consideration of busting -- will make it much more manageable for you. I don't think it could hurt you to start the D3 regimen right away.
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  33. Jacob, Sorry to hear you're in a bad place. It does get better. There are thousands of us now that can attest to that! As far as I'm concerned mm is magic at kicking our CH to the curb. Have you tried sleeping sitting up in recliner? That's magic for me at reducing the frequency and intensity of the night attacks. I started taking mm, and LSA (seeds) about (hmm maybe 8) years ago now and it's completely changed my life for the better. I'm curious, where in the states are you? PFW, J
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  34. Hi everyone, I'm posting this for Eileen (Cluster Busters, Communication and Education Director). This company is recruiting research subjects for a CH treatment. If interested, you can signup at the following link. https://www.science37.com/participants/neurology/cluster-headaches/?utm_source=ClusterBusters&utm_medium=Research PFW to all, J
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  35. In the "Study Details" part, it says you have to live in California or New York to participate. I see that there's a Kudrow involved. That seems like a good sign, since that's a family that has been committed to CH treatment for a long time. But I wish they had satisfied my curiosity a little more about what's being studied (a device? a medication? . . .).
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  36. Have you looked into hemicrania continua? It seems like at least some aspects fit your symptoms (most importantly, the long-duration pain). Here's one description. http://www.webmd.com/migraines-headaches/guide/hemicrania-continua-symptoms-treatment There's something similar (I think), paroxysmal chronic hemicrania, but that might just be different names for what is essentially the same thing. To extent we trust any gender associations, these are said to be more common among women. The good thing is that if this is what you have, the drug indomethacin treats it quite effectively.
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  37. I agree with CHfather, the tablets don't help me quick enough at all. ive only just been prescribed some nasal sprays and used the first one last night and it did help in about half hour but it don't taste great. I'm going to ask about injections and I think you might find a quicker relief from either of them aswell. def find out about the oxygen, I'm going to do the same! I'm in the uk so I'm not sure how your insurance and stuff works. I know how you feel tho, ive been suffering and feeling so depressed...I bet most of the people on here have been through that but I just joined and its nice to have support from people who know exactly what its like. its awful but you can push through like all the other times :) I keep thinking about when they are gone and how I'm going to celebrate! keep strong!
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  38. This thread is about a year old but I figured I would drop in my own 2 cents. I've had CH since puberty. Occular migraines started when I was around 30 or so. As others have described I have angular prismatic pulsing blind spots that I can see with my eyes closed. These seem to be a problem with my vision (brain) rather than the eyes themselves. I have these rarely when in a cluster cycle but I'll usually experience a few leading up to a cycle. I just now had my first occular issue in over a year (which prompted me to check the forum here and made it a pain to register as I couldn't see half my screen). This means I'm probably set for another cluster cycle this spring. I'll start another thread on that to track this cycle. If it is any use to the OP, these seem to be harmless but I agree they are definitely scary. I've had to pull over when driving and wait them out because I couldn't see the road. Fortunately they tend to not last more than 20 minutes and spread slowly. Today's aura started in the lower left side of my vision and spread to take out most of the left side which then faded to just corners of my vision. 25 minutes and it is almost completely gone. When I'm in a full-blown CH cycle these often include the nausea and the restlessness I get from the headaches but today there was no pain or nausea. Lucky me... I only went legally blind for a half hour. As for causes or triggers I've noticed changes to my sleep patterns and stress seem to bring these on but the primary thing I notice is I get them at work when I've been staring at my monitor too hard for too long. I suspect I'm breathing too shallowly or even unconsciously holding my breath so there could be an oxygen connection. If I ever learn more I'll be sure to share it here.
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  39. Yeah I just use O2 and energy drinks any more but if a big O works ya who am I to judge. Imitrex makes it worse for me in the long run.
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  40. Usually oxygen isn't administered very effectively in emergency room, plus by the time you get there you've missed the time to get on it, which is at the first sign of an attack. With very few exceptions, a proper oxygen setup and technique will abort an attack in something like 10-15 minutes. An energy drink as you're starting the O2 can reduce the abort time. Roughly 15-20 percent of people with CH use welding O2, either because stupid or uncaring doctors don't/won't prescribe it, or just because over the long run it can be a lot cheaper. Check back with us if you decide to go that route. A neurologist who doesn't mention oxygen and prescribes sumatriptan pills is essentially treating you for migraines. What level of verapamil are you taking? During a cycle, many people find that they only get results from something in the 900mg range. Another big difference from migraine treatment. I'm not saying you have migraines, or even that your neurologist thinks you have migraines and not CH; I'm saying that CH, excruciatingly painful as it is, needs to be treated aggressively with the best possible methods, not with a casual "Let's see what happens" approach. The D3 regimen information is in the ClusterBuster Files. Lots and lots of people are certain that it has either prevented or significantly reduced the severity of their attacks.
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  41. Sumatriptan pills are nearly worthless. I'm glad they seem to be helping you, but you really want injections or at least the nasal spray. I know that's not good news with your current situation, but it's fact. You don't have oxygen!?! You need to demand oxygen, or you need to set up your own system using welding oxygen. Oxygen is ESSENTIAL. If you don't have a competent neurologist and won't be seeing one any time soon, you should really consider going the welding route. To repeat: oxygen is ESSENTIAL. You should have been prescribed a preventive medication, not just an "abortive." Verapamil is the most commonly prescribed preventive. Read about pharma options so you know what's available. Google [goadsby treatment of cluster headache] for a simple listing. Plenty of coupons on the internet. For example, www.goodrx.com. Start the vitamin D3 regimen, which you can read about in the ClusterBuster Files section. Try drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Try melatonin at night, starting at 9mg and working up as needed. Some people find that putting their feet in a tub with water as hot as they can stand helps calm an attack. Read the list of triggers in the ClusterBuster Files section to be sure you're not creating any unnecessary attacks for yourself. Consider busting (read the numbered files in that CB Files section).
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  42. One of the absolute worst cases of chronic CH I've known of, via a forum member here, "Bonkers", involved head injury induced CH where where the pain level would sky rocket so high, passing out from it was was actually routine. So my take on passing out from CH pain is it is very rare, but not unheard of, and there's no hard rule that it can't happen to some individuals.
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  43. I'll let others suggest. You don't list not doing intake interviews as one possible accommodation, and I assume that's because it's either impossible to have your assignments changed in that way, or not something you want to give up. But under ADA, "Reasonable accommodation is any change or adjustment to a job or work environment . . . . For example, reasonable accommodation may include . . . job restructuring . . ." And I'm sorry to take this in the direction you didn't want to go, in a way that I'm sure will irritate you, but "knowing about D3" and "understanding busting" are not the same as doing them, and ultimately, not having chronic CH is the only way you're going to restore your ability to do this work in the way you want to do it, and D3 and busting have shown themselves to be the best ways that I know of to accomplish that. Since you've made clear that none of this is what you are asking for, you don't need to reply. As I say, I hope others will make more of the kinds of suggestions you are looking for. Best wishes.
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  44. Hi and welcome kevlar! It seems that you have done a lot of reading on the board and learned a lot. Isn't it amazing that this site is miles ahead of most doctors? Oh course it is a rather rare disorder and most physicians would go broke if they only treated Chers! Kudu's for getting started on the D3 Regimen. For some it actually stops the hits and for many it will lower the intensity and ramp up time considerably. Either way, you win. A proper O2 set up will amaze you! You really need at least 15lpm with a non-rebreather mask. With the proper breathing technique, you can kill a hit in 10 minutes or less. Have you tried an energy shot or caffeine at the first sign of an attack? They can abort one for you. Drink it down fast. at the first sign of a hit. Yes, falling barometric pressure is a common trigger. Airplanes do not maintain the same pressure that you experience down here. And falling pressure due to weather fronts can be rough too. Triptans are famous for extending cycles. The pills take too long to really help much. Nasal spray or injection are preferred. As for Topa many of us call it Dopamax. Verapamil is often the first pharma prescribed. Good luck with your appt. and I really hope that you get the O2 you so desperately need.
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  45. Hi Bigtime, welcome. It seems you did very well until know. I'm super happy for you and thanks for contributing your story here on the board. one thing I like asking you: This time, did the beast change in format? Same side, apearing exactly the same way as it did in the past or do you notice any change? thAnks
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  46. The bad news is that for most people things don't get better on their own with age/time. For some they do -- maybe you'll be one of them. The good news is, holy cow, gosh, there are plenty of things that will help you. Most people would put oxygen #1 on that list, as an abortive for your attacks. Pharma meds such as verapamil as a preventive and injectable sumatriptan as a backup abortive are often effective. You really need to become familiar with oxygen and meds. In the ClusterBuster Files section of this board, you could look over "Bob's Big Pocket Guide . . ." Find the places that seem most relevant to you and start there. For strictly pharma stuff, google [Goadsby treatment of cluster headache] for a clear discussion. A list of recommended doctors appears as the first post at the top of this board ("General Board"). A good doctor makes a difference. Many docs won't/don't even prescribe oxygen, which is pretty close to malpractice given that all medical references list it as the #1 abortive. (You can set up your own oxygen system using welding oxygen, as about 20% of people with CH do, but an O2 prescription is a nice thing to have.) The vitamin D3 regimen that is described in that same ClusterBuster Files section has helped hundreds of people. Give it some very serious consideration. Busting is highly effective. Read the numbered files in the CB Files section to learn more about that. Try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. It can reduce the severity of attacks and sometimes even abort them. Strong cup of coffee might work, but the energy shots are generally better. Melatonin at night, starting at 9 mg and working up, helps many . . . CH still sucks, but you could be feeling a whole lot better.
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  47. MJ, My ex wife stabbed me in the back several times. She didn't use a fork though, she had a lawyer do it for her... ROFL. (ok, back to being serious.) Have you tried the methods primarily described on this site? MM, LSA seeds, 100% high flow Oxygen etc? They all work GREAT (and significantly less damaging than a fork. J
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  48. Some links I found. 35 year old woman with coronary artery disease has a heart attack after first dose of SQ sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/7783891 56-year-old female patient with migraine who experienced a myocardial infarction shortly after using sumatriptan, despite having had a normal cardiovascular evaluation. http://www.ncbi.nlm.nih.gov/pubmed/8682677 Risk of severe cardiovascular adverse events after the use of a triptan is estimated at 1:100,000 treated attacks http://www.ncbi.nlm.nih.gov/pubmed/20977405 42-year-old man with episodic cluster headache without history of coronary artery disease who was admitted to our coronary care unit for acute myocardial infarction after 3 h of subcutaneous injection of sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/16601942?dopt=Abstract If you keep looking there are more. Most cases, but not all involve people that already were experiencing some sort of heart condition. There are also a good amount of people reporting chest pain that turns out to most likely NOT involve any sort of heart problem. (There is something to also be said for the fact that just because you have not been diagnosed with a heart problem, that could still mean that you just have an UNDIAGNOSED heart problem) My take on everything I have read--if you have a pre-existing heart condition I would be pretty wary of taking sumatriptan. For the rest of us, be on the lookout for dangerous side effects but personally I am not too worried about it. There are a number of weird cases out there involving sumatriptan possibly having a negative cardiac event but with the unbelievably huge number of people that have at this point taken the drug with no problems, I'm not convinced it's something I should worry about enough to stop taking sumatriptan. I would however be very wary of mixing sumatriptan with certain meds (like verapamil). Anybody have any other cardiac info on sumatriptan, whether from research or anecdotal? -Ricardo
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  49. I want to expand on this to help CHrs make a better decision for themselves. The neurologist that I was seeing is on one of CH specialist list. He told me that the recommend dose is 2 per day but because clusters are so bad to inject every time I had one. He prescribed me Sumavel Dosepro 6 mg. Each injection cost $89. For 51 attacks that was $4539 in one week. It did give me cardiology problems for a couple of weeks. Not sure what the long term effects will be but sure I will have some. They know what the side effects are and do not care.
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  50. Smoking DMT was amazingly helpful for me but is a hard choice for me to recommend to people. Ayahuasca, while being a great experience for me, did not seem super helpful. What is always good to remember though, that "Ayahuasca" is a blanket term for a brew that contains both DMT and a MAO inhibitor to make the the DMT not get destroyed in our gut by the MAO enzyme. In other words, there are a lot of plants that you can use and I would imagine that each would be different. The one major thing that I wonder about with DMT is the fact that it is an endogenous brain chemical, we make it ourselves. This has led researchers to believe that it does not create "tolerance" because it needs to work all the time in your brain. If your brain did create a tolerance to it you would no longer be able to use the DMT in your brain that you need to and you would most likely not be functioning at all anymore. To me, this may be the crucial thing that separates the long lasting relief drugs (LSD, Psilocybin, etc..) from the short acting not long lasting relief drugs (like DMT) When you take mushrooms over and over again you KNOW that it is affecting your brain for months at a time because you take them again and don't have as pronounced of an effect. This may not be what is giving us relief, but I wonder if it is. -Ricardo
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