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CHfather

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  1. Like
    CHfather reacted to Pebblesthecorgi in Emgality Shot for Episodic Clusters   
    These new CRGP drugs may be very helpful in managing clusters.  There have been consistent positive reports of success with these drugs.  They have to be used in higher doses than for migraine patients and we still don't know if episodics need to take all the time or only when in cycle.  There are also "indication limitations" for competitive products like Amovig (indicated for chronic migraines).  The biggest concern is these medications are very new and we have zero long term safety data.  In contrast D3 seems safe and individual reports are encouraging.  Busting has an enormous amount of safety data from the recreational world and individual reports are generally positive.  Its all a work in progress and sometimes its better to dance with the devil you know.  If you are driving "between the lines" of life then O2 remains the most logical abortive assisted occasionally by imitrex like meds and the CGRP drugs may be the best prescription preventative we have available. 
  2. Like
    CHfather reacted to Ruairidh in Hi there. Y'all saved my life.   
    Jesus, this is true. I should say that the healing process was about a year, during which we did weekly professional therapy with a supportive therapist as well as weekly dosing. 
  3. Like
    CHfather reacted to Pebblesthecorgi in Hi there. Y'all saved my life.   
    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
  4. Like
    CHfather reacted to Ruairidh in 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. Like
    CHfather reacted to Into Light in Females and O2   
    according to my neurologist, who tried to prescribe the vials. and they are no l longer available. i get zembrace which is 3 mg subcutaneous. haven't  used it. 
  6. Like
    CHfather got a reaction from yme in Females and O2   
    yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.
  7. Like
    CHfather got a reaction from My Favourite Headache in Cluster headaches related to sinus infections?   
    CH is often misdiagnosed as sinus headache.  More than a few people with CH have had sinus surgery because that was thought to be their problem when it wasn't.  Evidence is growing that pollen/allergies have an effect on CH, and I would imagine also on sinus headaches, so there could be a false correlation there.  Do not fully rely on what an ENT says -- they can see things that aren't there.  I'm not saying you don't have sinus headaches or some other kind of headache or CH -- only to be careful about that diagnosis.  Try to get to a headache center if you can (most neurologists are pretty useless).
     
    Your symptoms are not all classic CH symptoms -- your attacks are a little or a lot too long to fit the "standard" definition, though some people do get long attacks; it's rare for a sequence of attacks to go on for only a few days; people do vomit from the pain but it's not common.  The pain around your eye is classic CH.  I don't think the numbness is a typical CH symptom, either, and I just don't know bout the popping. Others might have something to say about that.  Needless to say, these are some serious effects (including that heart rate drop), and I'm sure you'll look into them vigorously.
     
    Did you get anything at the ER that seemed to help? 
  8. Like
    CHfather got a reaction from yme in Females and O2   
    yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.
  9. Like
    CHfather reacted to Joshua in Emgality   
    @jimmys - I'm still here, and I'm cluster free after using Emgality for 2 consecutive months. I went from 5 hits a day, to about 2, to none over a few weeks, then totally pain free. I did not take it the 3rd month, and am still pain free a month in. I have also tapered off all Verapamil, etc.
    I did not have any side effects to speak of. Get in touch with me directly with any questions and good luck!
  10. Like
    CHfather got a reaction from signals61 in Does Advil working mean it’s not CH?   
    You really haven't said much in your posts here, at least as I remember them, about your symptoms.  You mentioned that you have an atypical pattern during attacks, which I think you said come in waves.  That and the Advil (and your now trying O2) is about all you have mentioned, at least as I remember.  What medicines or treatments have you tried?  Do you have these kinds of symptoms? 
    Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck One-sided pain Restlessness Excessive tearing Redness of your eye on the affected side Stuffy or runny nose on the affected side Forehead or facial sweating on the affected side Pale skin (pallor) or flushing on your face Swelling around your eye on the affected side Drooping eyelid on the affected side  
  11. Like
    CHfather got a reaction from Rod H in Emgality   
    jimmy', your best bet is to type Emgality into the search bar at the top right of the page.  You'll see more responses that way.  I think they have been mixed: little or no success for some, good results for others.  Important to keep in mind that people for whom it worked probably are no longer here or might never have been here.
  12. Like
    CHfather reacted to jon019 in introducing my friend who just registered for the board   
    ....personally, I'd crawl thru hell in a gasoline suit to get O2...saved my sanity, perhaps my life...and got me as close to a "regular" life as a clusterhead can get.....NOTHING to lose but pain.............
  13. Like
    CHfather got a reaction from jon019 in introducing my friend who just registered for the board   
    This is very unlikely.  Most general-practice docs don't prescribe oxygen, for unjustifiable reasons that we don't have to go into here.  Maybe he'll get lucky.  Ask the doctor to look up CH abortive treatments in whatever app s/he uses -- oxygen is listed #1. As spiny said, medical O2 without insurance is very expensive, and some medical oxygen suppliers won't give it to you without insurance, even with a prescription.  I know it's hard to appreciate how critical O2 is to his wellbeing and state of mind, but it can't be overstated.  Many, many people with CH describe it without much exaggeration as a lifesaver.  A welding O2-based system can be set up for under $200.  I won't push on this any more, but needed to say this.
  14. Like
    CHfather got a reaction from Pebblesthecorgi in C02 machine   
    No. It's a concentrator, and those are generally no good (the O2 is not pure enough), and 5 lpm is not nearly enough.  
  15. Like
    CHfather reacted to zgreek in More than 12 mg Imitrex in 24 hours   
    Hey Scott, I lived on Imitrex injections and verapamil for years. Routinely 2 to 4 inj. a day, as high as 6/day. During one particularly bad cycle I used over 100 in 5 weeks (that got the attention of my neuro). This was my only means to get thru work, and keep my sanity. I also knew I could not keep that regiment up.
    Since finding CB, my Trex use is minimal, maybe 1 to 6 times per cycle(desperate times require desperate measures), my cycles were about 16 weeks, now they are about 12 using O2, D3, and busting.
     
  16. Like
    CHfather reacted to Dallas Denny in Finding the way here   
    @CHfather. I found the old clustercluster.com site in 2007 by clicking  the "clusterbusters" in the old ch dot com navigation bar.....it was strictly a website then with all of the info that's in Tommy D's files and there was one of those password protected "Yahoo groups" for discussion......I know the vast majority of us who joined this forum when it went live came from DJ's board because the launch was announced there so have no idea how we would have found this place thru a search back then!!
    Bless you DJ!
     
    Dallas Denny 
  17. Like
    CHfather got a reaction from Racer1_NC in Oxygen usage   
    There isn't really a "too long."  20 minutes is fine, and so is longer on occasions when it might be necessary.  You want to be sure the attack is fully extinguished, or it will come back. The general advice here is to keep using the O2 for at least 5 minutes after the attack is fully gone. That seems to prevent the kind of recurrence you experienced.
  18. Like
    CHfather got a reaction from Racer1_NC in Oxygen usage   
    There isn't really a "too long."  20 minutes is fine, and so is longer on occasions when it might be necessary.  You want to be sure the attack is fully extinguished, or it will come back. The general advice here is to keep using the O2 for at least 5 minutes after the attack is fully gone. That seems to prevent the kind of recurrence you experienced.
  19. Like
    CHfather got a reaction from signals61 in New to the group - some observations   
    signals', you got most everything covered here by two great members. Here's a thread for the advice abut getting two or three jabs from each 6mg Imitrex autoinjector:  https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    I don't think there's much in here you won't know, but just in case . . . . https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    In case you decide to go the welding O2 route, we've got you covered: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
    Keep in mind that for busting, you can legally and reliably buy and possess a very effective agent, rivea corymbosa (RC) seeds, which cause no trip effects in most people and are as effective as the more hallucinogenic substances. It is unlawful to prepare and drink seeds.
  20. Like
    CHfather reacted to Pebblesthecorgi in Finding the way here   
    This is kinda random.  I "googled "cluster headaches" from inside the US and went through 6 pages of "hits" without finding clusterbusters or any of the sites that support cluster sufferers.  You end up with what I suspect are paid positions and a few articles from the popular press.  I think back all those years ago I was desperately seeking assistance and landed here.  I'm not sure if I were looking today I'd find this site.  Not sure if anything can be done about this.  Maybe its better the profile is low given the discussion topics but gee whiz these discussions are truly life saving.
  21. Like
    CHfather reacted to Batch in New to the group - some observations   
    Hey Signals,
    Welcome to Clusterbusters.  We know what you've been going through so you've come to the right place.  Regarding travel and taking the vitamin D3 regimen, I pack a ziplock bag with enough vitamin D3 and cofactors to last the duration of my travels plus enough for a few more days in case of delays and keep it in my carry on bag.  In the 8 + years since I developed this regimen, I've never had any problems with TSA or customs during international travel.
    I switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules.  They make the loading schedule a snap at one capsule a day. I've been taking one D3-50 a week as my maintenance dose and this has been adequate to kept me CH pain free.  At one D3-50 a week the daily cost is ~3 cents/day where the oil-based liquid softgels cost 6 cents per 5000 IU or 12 cents/day.
    Check your PM InBox, I've sent some additional info.
    Take care and please keep us posted.
    V/R, Batch
  22. Like
    CHfather reacted to jon019 in New to the group - some observations   
    Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest.
    Hiya Signal...glad ya found us!...post away, sometimes just saying this stuff is better than any med...and we REALLY get it...
    .....I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition......Maybe I'm wrong, but it always felt like it was worth looking into.  
    ...I think it's a valid concern....and not just for CH....we are all exposed to all kinds (and ever increasing) forms of electronic "waves"... and someday they may look back on us with derision and amusement at our cavalier ignorance...like we do for the Roman's drinking out of lead wine glasses. Worked for a company that used a 50k watt microwave to thaw fish blocks for processing...BEAUTIFUL stainless machine...30' long and very efficient. The company rep used to regale us with stories of microwave history....like that the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"...can you say cooked liver?
    He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. 
    ...some folks can use the pills as a prevent if they know their cycle well and get the timing figured out....but they indeed be worthless to most as an abortive. A standard treatment would be a prednisone (or methylprednisolone IV) and/or pill taper to break a cycle  while ramping up verapamil dosage (10-14 days). Sweet spot reported to be 480 mg/dy of immediate release type (lesser, but not zero, reported success with sustained release). Some go much higher...I was over 1000 mg/dy in high cycle. Heart issue side effects potential MUST be monitored. Know not the ramifications of mixing atenolol (Tenormin) and verap.  One of the first meds I was ever prescribed for CH was atenolol...didn't do squat. Don't waste your time on Inderal (propranolol)..some success with migraine but not CH....
    ...many find that the 6 mg suma injections are too big a hammer and 'hack" the injectors to get 2-3 mg injects instead... which works just fine with fewer side effects and a lesser chance of rebounds. vials of the drug are sometimes available (ask your pharmacist) where you can use exactly the amount that works (using insulin needles)...
    ...my abort of last resort is Zomig nasal spray (5 mg)....for me no side effects, no rebounds, and an 18 hr hit free window....added bonus of insurance would approve suma and Zomig scripts at same time (tho not enough of either)....caution to NEVER mix triptans within less than 24 hrs....
     I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent.
    ...same hard earned aha moment for me....when I stopped screaming, cursing, thrashing, hitting myself and anything close, and working myself into a frenzy I was able to cope much better. pain was the same...my reaction to it made a HUGE difference...adrenaline at the WRONG time is not your friend.....
    I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. 
    do whatever you need to do to try the D3 regimen...it may make everything else unnecessary! haven't heard of TSA concern with the necessary pills...but I used to carry all my scripts.... and photo copy of the vitamin bottles with pills shown would be a good idea....
    I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. 
    well...your doc sounds like he/she knows what they are doing so I am surprised they didn't INSIST on OXYGEN....tis the accepted standard of care first line abortive. O2 has saved many a clusterheads sanity, maybe life. not sure what you experienced at the O2 shop... but you do need a script...and if your insurance doesn't cover...you can offer to self pay. if that doesn't work welding oxygen (same as medical) is your next option...
    ....I used to travel in cycle...using Lincare travel service I was able to arrange for oxygen tanks at my hotel...same service, same price. you probably already know that the airlines won't allow you to board O2 tanks....
    I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day.
    ...see previous comments re hacks and vials (i could get 15 injects out of the 5 vials)...it IS a powerful med not to be trifled with...especially as you age....
    Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail.
    ...if your doc has an advocates heart (and a healthy disdain for insurance droids) have them write a 'letter of medical necessity" describing your "intractable' cluster headaches and the need for "X" number of vials/dose packs....denying you the scripts your doctor has prescribed without seeing and evaluating you is called practicing without a license....most docs I know are a little more than touchy about being questioned on diagnosis or treatment...
    So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. 
    Stockpiling!!!.....
    best
    jonathan
  23. Thanks
    CHfather got a reaction from Racer1_NC in Demand Valve O2   
    Never heard of anyone in US having a problem getting a regulator.  No prescription needed.  Mixed experiences regarding demand valves from medical suppliers -- some seem to require a prescription; others don't seem to.  I don't know why.  In other venues, such as EBay, there seem to be no prescriptions required.
    Just a couple of comments on this.  Demand valve is nice, but you don't need it to accomplish those purposes. And they're expensive, particularly since you have to have the regulators (with DISS fittings) in any event.
    If you have a high-flow regulator (25 or above), or any kind of welding regulator, you will almost certainly have no issue with waiting for the bag to fill, unless you have unusually high lung capacity. (As you have noted, you'll need a CGA870 for the smaller medical tanks and a CGA540 for the welding tanks.)  And (I still could be corrected on this) I don't think a DV saves any significant oxygen, since each time you inhale using the DV, you are inhaling roughly the same amount you would have inhaled from a full bag.
     
  24. Like
    CHfather got a reaction from spiny in Living with episodic CH.   
    This is interesting and valuable.  Thank you.
    But I have three words for you. Oxygen, oxygen, oxygen.  It's faster than your pills are working, better for you, less guesswork involved, and no need for the other strategies you describe.
    And a few more thoughts: D3 regimen. Energy shots. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    It's rare for "dark and quiet room" to be an option for someone experiencing a CH attack, so you are fortunate in that way.
  25. Like
    CHfather reacted to jon019 in Living with episodic CH.   
    Hi Desty...welcome...that's quite a ride you describe...since there are no questions, did you want us to comment or are you just reporting?
    best
    jonathan
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