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  1. 5 points
    Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches. The criteria are pretty straight forward but overlap some other conditions. Many headache conditions respond to imitrex, very few respond to O2 therapy used properly. i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers. It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions. The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches. The attachment is a bit large and may not be allowed to be updated. Maybe an administrator can help if it doesn't upload. You can PM me if you want and I'll email it if you wish. @CSA get a diagnosis. uptodateguidlines.pdf
  2. 5 points
    Freud

    Update

    Hi all I am alive and well. My PTSD ended up getting triggered in Dallas as I thought it might. Sorry for my long absence. Thanks to all that sent their love. I will be back on the boards and this thread w an update. Short version is I am now having 4-6 kip 7-9CH a day. My D peaked at 277 w no bump in Ca or PTH. (I was about 150ish before I was admitted unfairly by my psych thinking I was manic and not triggered and I knew it was going to happen so I loaded w 1.5 mil units before my admission. My D spiked to 277 w that and my CH were gone for a bit. But as it burned off they came back as expected. ). I’m going to get w @Batchtoday and go over numbers to figure out a more aggressive load and burn schedule. I am also dosing w vitamin L... happy trails folks love me
  3. 4 points
    jon019

    Trying to understand my experience

    hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit... ....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works... ....somewhat typical to get worse over time from initial onset...but that is NOT a given... .....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis.. best jonathan
  4. 4 points
    Ruairidh

    Hi there. Y'all saved my life.

    Hi. Name's pronounced 'Rori'. I battled unremittant chronic CH with upwards of a dozen distinct hits per day from mid 2011 through fall of 2017, and can happily say that I have had nothing but light shadows since my old hippy mother found the Busting method here and my somewhat sketchy connection came through for me. At the time of the attacks I had worked to convince myself that what I was experiencing was a mild form of the disease -- only after they faded from my life did I understand what I had simply grown accustomed to. No, wanting to trepan ones self to stop the pain is not a mild symptom. Loss of motor control and blackouts due to pain are not mild. The title says it all. For six years I was functionally disabled (though the medical establishment says otherwise), socially isolated, and completely controlled by the raft of CH triggers I experienced, which seemed to range everywhere from sleep to caffeine to spicy foods and dust and... just... I think that the whole world would be best described as one big trigger. I wasn't able to drive a vehicle or operate power tools safely, couldn't ride a bike or walk quickly, couldn't get around florescent lights or anything that produced a frequency, and my doctors... Propranolol gave me the blood pressure of a corpse. Amitriptyline made me forget my name and address. Imitrex and Topomax made it worse, if at all possible. After I refused to take the Topomax my Neurologist refused to see me. MRIs and CAT scans came back 'perfectly normal'. Then finally the stars aligned . . . I went to a liberal arts college (the CH started right after graduation) and friends had given me magic mushrooms in the past. I had been hoarding my single remaining baggy trying to make microdosing work. Nope. Not effective. And then I met a girl who drank too much, and needed a miracle of her own. Where my personal thoughts to myself were to Gut Up and Deal (see above re: mild case? I'm from a Navy Family...), I found that where I lacked the audacity to reach out to friends for my own sake, when I fell in love with a girl who drowned herself in minimum half a liter of vodka daily and knew she wanted out, I found that strength, at the moment when my network had a solid connection. Its amazing what you can do for others when your own strength is failing (again: Navy family). Several ounces of psychedelic and two years later, I am still cluster free, able to see, drive, hold down a job, and THINK, while the girl who is now my wife hasn't touched liquor in two years. Yeah. Y'all saved my life. Thank you. Keep fighting.
  5. 3 points
    spiny

    In-person support groups

    I think that there are too few of us to have a regular support meeting like AA. However, many have formed groups who live in the same general area and meet a few times a year to visit and exchange war stories. The big group is the Annual Clusterbuster Conference. In 2020 it will be held in Chicago in September. It is truly an amazing experience to meet a big group of people who have CH!!! Well worth the money and trip. You will learn a lot and be surrounded by people who 'get it'. ATB!
  6. 2 points
    CSA

    Trying to understand my experience

    Thank you both for the advice and for giving me a bit of perspective. I do not have a diagnosis. The oral sumatriptan was prescribed by a headache specialist just after my first cluster headache because of 'atypical migraines.' I was having daily headaches at the time. I did a trial of Topamax that didn't help and then an antidepressant that did for a month but then caused really bad insomnia which then triggered the headaches to start again. I moved out of state at that point and never followed up with another neuro because the headaches were manageable. The neuro never had anything to say about that first cluster headache. I realize I have it relatively mild compared to most. That's not lost on me but you are absolutely right that the peace of mind would be priceless. I live nearby a university headache center that includes psych providers in house so I'll try getting in there. This may sound dumb but I didn’t realize you could just have oxygen sitting around for years.
  7. 2 points
    The pharmacist's counsel was a) it doesn't really matter, but b) it's never bad to take new medications in the morning (ones that don't have a specific dosing time) in case there are side effects. Makes sense that we'd more likely notice any effects if we're awake to see/feel them. Thought that was good, and "doh!" (somewhat obvious) advice. So the injections were made this morning. Keeping fingers crossed that it helps break this torturous cycle!
  8. 2 points
    ......actually an excellent question...it CAN be VERY specific and important to the med in use ....best bet to ask your Pharmacist (or any pharm, seems they're in every grocery store). they get doctorates (about 8 yrs of school) these days.... and (unless it's Costco and they can't be bothered) are more capable than most docs providing just how much detail you want/need..... ...if you get your meds mail order, they have pharms on staff specifically for patient consult...besides a good practice...it's the law!
  9. 2 points
    Pebblesthecorgi

    New cocktail

    Steroids in high enough doses can quell a cycle but likely not break one. Then you have to deal with the potential side effects of steroids. They can be helpful but like most interventions its a two sided sword. Mobic is just a fancy non steroidal like indomethacin or motrin. It is a COX 2 inhibitor but a doubt very much it will help clusters. It has a role in treating acute post operative pain but not much of a track record in cluster headaches. Was the sumatriptan injection, nasal or oral? Oral is useless in acute attacks. A good test to see if this individual offered oxygen, discussed CGRP meds an has a stepwise plan. Anyone who understands cluster headaches from a treatment perspective should offer O2 up front to abort. If they don't their knowledge is suspect.
  10. 2 points
    spiny

    Cycle finally over

    Don't dread it - prepare for it. Beat it to the punch! Being prepared has been the biggest help for me in terms of 'dread'.
  11. 2 points
    jon019

    Cycle finally over

  12. 2 points
    dmlonghorn

    Update

    Freud!!! It's good to see you back in the mix !
  13. 2 points
    Rod H

    Update

    Glad you are back.
  14. 2 points
    Pebblesthecorgi

    Update

    Glad you are back in the saddle. It is good to hear from you. best wishes for taming the beast
  15. 2 points
    Hey Alikhan, Oxygen therapy with hyperventilation can be effective aborting both cluster and migraine headaches. If you haven't tried it, the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors has a proven track record preventing cluster and migraine headaches. You can download a copy of this treatment protocol at the following vitaminDwiki link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch
  16. 2 points
    Thank you for the testimonial. The substances in question help reset the brain to remove the craving. It still takes love and work to avoid the circumstances that enabled the craving. These molecules are not "magic pills" they are only tools to battle demons. Congratulations to you both
  17. 2 points
    rstucker1

    anyone else entering fall cycle?

    I'm back to this board after 2 years of complete relief. Two years ago I got slammed with chronic CH after a 10 year remission. Previously I'd always been eposodic with one a day max at the same time in the evening so when they came back chronic I was totally unprepared and this forum was a total life saver. I was suggested to start the D3 starting with 50K daily dosing along with the other vitamins. At about the same time my PC doc referred me to an excellent neurosurgeon who immediately started me on Verapamil 120 mg and made sure I had all the oxygen I needed along with a good stock of Imitrex. He also wrote me a script for a 12 lpm regulator but I got a 25 lpm from Amazon. I'm not sure if it was the D3 and vitamins or the Verapamil or the combo but within a day my attacks went from one every 1 - 2 hours 24 hours a day down to 3 a day and then to 1 a day and within about 5 days to none. Over the next few months my neurosurgeon gradually increased my Verapamil dosage to 480 daily which took care of all my shadow headaches and I haven't had any type of a headache since. Then, last week almost to the day when my chronic sessions flared up 2 years ago, my cardiologist took me off of Verapamil as he was concerned it may interact with some new meds he wanted me to take. I've missed taking my verapamil up to a few days at a time with no consequences so perhaps this was just my cycle firing up again. Within a day my CH's started up again chronic and quickly spiraled from 2 or 3 a day to one every 30 - 45 minutes. I immediately got with my Neurosurgeon and Cardiologist and restarted Verapamil but this time it didn't help. My neurologist also explained about Emgality and wrote a prescription for the CH 300 mg dosing but was out of samples. Unfortunately my Emgality RX has been caught up in insurance delays but today my neurologist he finally got ahold of some samples of Emgality at the initial Migrane dosing of 2 x 120 mg which I started today. I' m now a few hours without any headaches and even my wife commented that I look like I'm back. She claims that she can tell by looking at me whenever my cycle starts and that my facial expressions and other things change whenever I'm in one of my cycles. I'm hopeful that this time I'm done for a while. This site and the forum have been a real life saver for myself and so many others. I can't thank everyone enough for their care, and genuine concern. I am sincerely grateful.
  18. 1 point
    kat_92

    Cycle finally over

    hey all I’m hoping everyone is doing okay during the last few weeks I know the fall is a rough time for many of you with the cycle beginning around that time. I just wanted to report that I am 2 weeks pain free not even shaddows really. So it seems my cycle lasted from July-November. Sounds about right. Oddly enough I find myself more depressed and nervous while I am out of the cycle? Does anyone else experience this? I hope I’m not alone. I find myself dreading next summer and it sucks. Pain free wishes kat
  19. 1 point
    Psiloscribe

    A little help from my friends

    Group, I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet. Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible. Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters. We've been able to help thousands of people that for the most part, had exhausted all other options. My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge. We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment. We have the top headache specialists in the world attending our conferences. We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators. We've completed research that showed the efficacy of LSD analogs like BOL-148 We have done research on LSA We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters. We have research starting in the next month on the genetics of clusters headaches. Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place. When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first. I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members. Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE. We are an open source organization. We do not only help people that pay for the help. I write all of this for one reason. This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done. This message board is responsible for saving lives and for all the accomplishments that have come along the way. I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves. I have poured a large portion of my life into not only this board but what this board represents. I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away. This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision. I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support. We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes. All I ask is that everyone please respect the board, respect the administrators and respect each other. You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can. Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before. Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people. The administrators of this board have done more work over the years than anyone here could imagine. Please, respect the board, respect the administrators and most importantly respect each other. Bob
  20. 1 point
    kat_92

    Cycle finally over

    @spiny yes that’s definitely the way I’m trying to look at it. @Brain on fire I am religiously taking the vitamin d regimen, and I was going to begin dosing starting in January to give me a few months to be prepared. I also have my O2 script and a place to get tanks so I hope I’m good to go @jon019 glad to hear I’m not alone. I agree I think during the cycle I was just trying to get through every day I didn’t have time to be sad. Thanks for the info! Kat
  21. 1 point
    Brain on fire

    Cycle finally over

    Hey Kat, glad it ended. Are you doing anything to prevent your next cycle?
  22. 1 point
    Jlands

    Emgality for episodic

    I am episodic and started a new cycle about 5 weeks ago. Was prescribed the prednisone taper (which always works for me) and Emgality at 3 100mg injections per month as stated above. After i finished the prednisone (about 3 weeks ago) it was time to see if Emgality was working. I've had maybe 1-2 clusters that I would rank as above a 5/10 and a few days of just getting the feeling of a headache coming but never materializing. The rest has been PF. For reference, during a cycle i typically get 1 per day. I'm pretty optimistic that the Emgality is helping.
  23. 1 point
    eileenbunny

    2020 Conference

    Hi Rox, we do offer travel scholarships every year to help those who find it financially straining to attend. They aren't always full scholarships, but they can help offset travel/registration costs.
  24. 1 point
    ThatHurtsMyHead

    2020 Conference

    I think Florida (Tampa st pete) would be awesome.. :). Afternoon sail for the first 20 or so. cheers, j
  25. 1 point
    Batch

    Females and O2

    Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender. What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive. The other half involves blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis. In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis. I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates. Respiratory alkalosis does several things that help abort CH. The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH. What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen. This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. This super-oxygenated blood flow and low arterial pH does two things. It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration. These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate. They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict. All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels. While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect. I can hear the wheels turning... WTF are Forced Vital Capacity Tidal Volumes? The answer is simple once you understand the terms. Tidal Volume = The volume of air (or oxygen) inhaled and exhaled. The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out. Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it. Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content. If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound. Try it now and hold the squeeze until your breath makes a wheezing sound. Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration." Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes. We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008. Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same. Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks. This came to a total of 366 aborts with this method of oxygen therapy. 364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic. The average abort time for these 364 aborts was 7 minutes. One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute. As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute. We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH. This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine. For reference, I hold a patent on the oxygen demand valve method of aborting CH. I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight. Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes are equally effective in aborting CH. Hope this helps. Take care, V/R, Batch
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