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Everything posted by CHfather

  1. CHfather

    Noob.. Just saying Hi

    That's pretty essential, the mask with the air bag (reservoir). Your mask will probably have a small circle of open holes on one side. Cover that with tape, or with your thumb, as you inhale (so you're inhaling only pure O2). Be sure you have a tight seal with the mask to your face. Cut off the strap (so if you fall asleep the mask will come off). Is your oxygen in tanks (not a machine that makes oxygen)? Also very important. And a regulator that goes up to at least 15 liters per minute. And good breathing strategy. You'll find your own strategy, but for many it's deep breaths and very forceful exhales at the beginning (almost doing a "crunch" to force air out of your lungs). Some people hyperventilate with room air for 30 seconds before their first O2 inhale. Hold the O2 in your lungs for a few beats. Look down toward your feet as you are doing it all. For many, a shot of caffeine while starting the O2 speeds the abort: could be some pre-made strong coffee; many use the 2 oz. energy shots or energy drinks. Many have found that going beyond the standard setup of the basic mask and 15 lpm makes a big difference, but let's see how it goes for you with what you have.
  2. CHfather

    Noob.. Just saying Hi

    wimp', it is good to read. As you would quickly see from your reading, the most significant thing you should have is oxygen. If you had it before and it didn't help you, you probably need to try it again, with a better system. You should almost certainly also start the vitamin D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 And, given your past experience, the numbered files in the ClusterBuster Files section might be of interest to you. Maybe look at the "Triggers" document when you're over there. There's lots more, of course, but I think those might be the current highlights for you. Ask anything, any time.
  3. CHfather

    Attachments ??????

    Okay, so this has been making me pretty nuts. I guess at this point I'm asking whether there's an admin who can help me out . . . I have an idea what's going on, but no way to correct it. I'm working an a PC (not phone or tablet). Using my standard Microsoft Edge browser, I see none of the things either of you (Pebbles and spiny) mention. Using Google Chrome, I DO see them. HOWEVER, I still get no attachment or paperclip option. So, trying everything I could think of, I clicked the down arrow next to my username at the very top right of the page. One of the items on the dropdown menu there is "Attachments"(!!) Things I have previously attached are there, going back to 2013 (nothing more recent than 2014), along with a message saying "You have used 569.07 kB of your 500 kB attachment limit." So I suppose that must be why I get no in-post attachment options today -- because I used all my attachment space up in 2013 and 2014. This seems bizarre, but I can't fix it, unless maybe I go back to those '13 and '14 posts and delete them.
  4. CHfather

    Attachments ??????

    Thank you! The only thing I see in the lower left here is the "Notify me of replies" checkbox. Gonna see what happens if I send this and then "edit" it. (Nope. Maybe it's my operating system or something.)
  5. CHfather


    You got it right, 'Mike. Looking forward to hearing more from you.
  6. CHfather

    Pathway CH-2 study

    THANK YOU! I was more interested in the other technologies, such as transcranial magnetic stimulation (TMS), that are discussed in the article. Now I can read it. TMS has a lot of fascinating applications.
  7. CHfather

    Pathway CH-2 study

    Pebbles', do you by any chance have access to this recent report: https://www.ncbi.nlm.nih.gov/pubmed/29601305? ("Noninvasive neuromodulation in migraine and cluster headache")
  8. CHfather

    They said I was nuts

    Are you splitting your injections? You can break open the autoinjector (see https://clusterbusters.org/forums/topic/2446-extending-imitrex/), and increasingly people are getting it in vials and establishing their own level. 2mg is plenty for most people (most autoinjectors have 6mg). There is a lot of evidence that triptans make attacks worse and extend cycles. No oxygen??????
  9. CHfather

    New member...new to CH

    Jen', these are the symptoms of CH. "Attacks of severe, strictly unilateral (one-sided) pain which is orbital (the area of your eye socket “behind your eye”), supraorbital (the area around your eye socket), temporal (area of your temple to the side of your eye) or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. Pain is maximal orbitally, supraorbitally, temporally or in any combination of these sites, but may spread to other regions of the head. Pain almost invariably recurs on the same side during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are usually unable to lie down and characteristically pace the floor. The attacks are associated with one or more of the following, all of which are ipsilateral (on the same side of the head as the headache pain): conjunctival injection (the mucous membrane that covers the front of the eye and lines the inside of the eyelids looks red/inflamed: “red eye”), lacrimation (the flow of tears), nasal congestion, rhinorrhea (nasal discharge/”runny nose”), forehead and facial sweating, miosis (excessive constriction/tightening of the eye’s pupil), ptosis (drooping of the upper eyelid), eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection). Most patients are restless or agitated during an attack." Typically, as you see, the eyes are involved, as the primary area of pain, and with visible symptoms on the side of the pain. Also nasal congestion and "runny nose." And a very typical thing is that agitation/inability to sit or lie still during an attack. And CH is typically one-sided, so if you are experiencing pain in both temples (even one at a time), it might not be CH. I'm asking some questions here, but you don't need to answer them, since I don't think we can really make a reliable diagnosis in this way. You are welcome to answer them, but of course you need a headache specialist for a real diagnosis. You idea of keeping a diary of your attacks is very good -- that usually helps a doctor with the diagnosis. You say that migraine meds don't help. Does that include a triptan (such as sumatriptan/Imitrex), or are you using mostly over-the-counter things for your migraines? Because CH is responsive to triptans, but not in pill form -- as injections or nasal spray. And you suggest that caffeine isn't helping. It often does help with CH, but sometimes it needs to be in a stronger form than a cup of coffee -- an "energy shot" such as 5-Hour Energy or an "energy drink" such as RedBull (for a variety or reasons, including that they have more caffeine), the shots are more effective. You say you wake up with a pounding headache. Do you mean that you wake up in the morning in that way, or you are awakened from sleep by it? People typically can't sleep through a whole CH attack, so if you are waking up at a "normal" time in the morning and then feeling the attack, it might not be CH. I feel uncomfortable recommending anything to you, since we're not sure you have CH. If you want to try drinking an energy shot at the first time as an attack, it might help. That's about the only short-term non-medical intervention I can think of right now. As big j says, you could try Benadryl (4x/day, with 25mg during the day and 50mg at night), since allergies make a lot of headaches worse. I just don't know how far you can reliably/safely go in any direction when we're not sure it's CH.
  10. Unfortunately, I can't access the full article, where the interesting stuff would be. So, FYI. https://www.ncbi.nlm.nih.gov/pubmed/29601305 EDIT: Here's a link to the full text, thanks to another member. https://clusterbusters.org/forums/applications/core/interface/file/attachment.php?id=1877 PURPOSE OF REVIEW: The purpose of this narrative review is to provide an overview of the currently available noninvasive neuromodulation devices for the treatment of migraine and cluster headache. RECENT FINDINGS: Over the last decade, several noninvasive devices have undergone development and clinical trials to evaluate efficacy and safety. Based on this body of work, single-pulse transcranial magnetic stimulation, transcutaneous supraorbital neurostimulation, and noninvasive vagal nerve stimulation devices have been cleared by the United States Food and Drug Administration and are available for clinical use for the treatment of primary headache disorders. SUMMARY: Overall, these novel noninvasive devices appear to be safe, well tolerated, and have demonstrated promising results in clinical trials in both migraine and cluster headache. This narrative review will provide a summary and update of the proposed mechanisms of action, evidence, safety, and future directions of various currently available modalities of noninvasive neuromodulation for the treatment of migraine and cluster headache.
  11. CHfather

    New CH member here, any ideas?

    Adding just a little to what Jon said. . . . Here's a link to learn more about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 In San Francisco, UCSF Medical Center Headache Center is led by one of the world's leading CH experts, Dr. Peter Goadsby: https://www.ucsfhealth.org/clinics/headache_center/ It's hard for me to imagine how fresh air helped you, but as Jon says, the highly-effective, no-side-effect standard abortive is oxygen. Lucky for you (compared to many people), I think you can count on seeing a doctor at Stanford or in SF who will prescribe O2. For some people, sipping ice water through a straw aimed at the roof of the mouth, in order to induce "brain freeze," will stop an attack. Any other method that gets that roof very cold (such as holding frozen juice concentrate against it) will accomplish the same purpose. I'm not mentioning drugs or druglike things such as melatonin and Benadryl, since you say you don't want that. If you change your mind, let us know. Since your hits come at night, you could try sleeping in a recliner or in some more upright position (e.g., at a table with your head on pillows on the table).
  12. CHfather

    new to verapimil

    'j, Lots of people believe, and there is some research evidence for it, that triptans make attacks worse and extend cycles. And trex is not good for you. You can split your trex injections, getting 3 or at least 2 from every injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  13. CHfather

    new to verapimil

    An attack that wakes you up and is already raging is harder to stop with O2, for sure. You don't say how long your attacks are, but I'd be willing to bet that O2 could still shorten them. spiny has mentioned putting a washcloth over the tip of a torch in her early days (I think). Is there a reason you can't bring your equipment into the house and give it a try? Ever tried an energy shot, such as 5-Hour Energy, to stop an attack? Works well for many (again, you can down one as soon as you wake up with an attack, as you start on the O2). For many, it doesn't keep them awake even if they drink it the during the night.
  14. CHfather

    new to verapimil

    'j, you haven't mentioned oxygen. you have it?
  15. CHfather

    Any news on BOL-148?

    When I briefly looked into this quite a few years ago, you had to have serious documentation as a researcher to get BOL from sites like that. University, registered research lab, etc.
  16. CHfather

    4 years and still going

    Very glad to hear of this progress, sontye! With oxygen, you'll stop attacks in less than 15 minutes, so please don't rely too much on what's working okay now, when you could have something even better.
  17. CHfather

    2.5 years off... but it always comes back!

    Haz', I remember you, of course. Sucks to see you again. :-) Regarding verap, there are folks who go up a lot higher in cycle (960mg/day or more), and many people say that ER verap is not as effective as non-ER. (It could be that your doc is just starting you lower and monitoring, as should be done.) As you probably know, some folks will get a prednisone taper to deal with the pain while the verap is being started up. Not much new that I can think of . . . Razor has been reporting excellent results with B vitamins. https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ I think maybe the addition by Batch of Benadryl to the D3 regimen might be new (25 mg four times a day and 50 mg at night).
  18. CHfather

    Patient Registry

    'Queen', Welcome! In another post, you say >>Melatonin has been my saviour.<< Please let us know about any other ways you're treating your CH!
  19. CHfather

    4 years and still going

    sontye, What spiny said, and . . . here's a link to the mask made for CH: http://www.clusterheadaches.com/ccp8/ You can also get a basic NON-REBREATHER mask for < $10 at the usual internet sites (amazon, ebay, etc.). You can buy an adapter so the tubing for a mask fits more easily onto the outlet from your welding regulator. I'm told they are sold in hardware stores: here's an example: https://www.amazon.com/Nipple-Nut-standard-D-I-S-S-concentrators-Each/dp/B000GHUNVS/ref=sr_1_1_a_it?ie=UTF8&qid=1519355238&sr=8-1&keywords=barbed+adapter+oxygen
  20. CHfather

    4 years and still going

    sontye, You can find all sides to the question of how pure welding O2 is compared to medical O2, from it's purer to it's the same stuff to it's not as pure. I only know that maybe 15 - 20 percent of people with CH use welding O2, and of the people we know of directly, none has reported having an issue. My daughter (the person in my family with CH) has used it for almost ten years now.
  21. CHfather

    4 years and still going

    An initial welding oxygen setup will cost you ~$250, depending on what size tank you get and what you are charged for it (prices vary a lot from place to place). You'll want to buy a mask (<$10 to about $30, depending on whether you get a standard non-breather mask or the mask that's made for CH) and a regulator (~$50), and you need a big adjustable wrench. You get the tank from any welding supply store (you can find the stores through google). We can walk you through more specifics (where to get a mask and regulator; what to say and not say when buying the tank). Let us know if you want more info. Prednisone for CH is usually prescribed as a taper, where you start with a fairly high dose (could be up to 60mg/day, but probably not that high in your case) and then take lower doses over the course of two or three weeks. That sounds to me like a lot of $ for verapamil + pred. O2 can add up.
  22. CHfather

    4 years and still going

    sontye, I gotta ask a few questions. Did you stop taking verapamil because it wasn't helping, or because of side effects? (Because it often doesn't help much until you get to considerably higher levels than most doctors prescribe, but it can help a lot when the levels are right.) Are you willing to try the vitamin D3 regimen that has helped very large numbers of people with CH? Helps prevent cycles, prevent attacks, and make attacks less severe. https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you're not willing to fight your insurance for O2 (federally funded insurance, such as Medicare and Medicaid won't fund it), are you able/willing to set up a system based on welding oxygen? Having O2 is such game-changer. Have you ever used injectable or nasal-spray sumatriptan? Have you looked at the materials on busting in the numbered files in the ClusterBuster Files section of this board? Not for everyone, but often makes a very big difference for shortening cycles? Here's some info about a bunch of things people do: Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. Some people take taurine pills along with caffeine pills. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks: https://www.campbells.com/v8/products/ There is a list here of the amount of caffeine in different beverages: https://www.caffeineinformer.com/the-caffeine-database “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Melatonin at bedtime. Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Not wise to take both melatonin and Benadryl at night (see Benadryl entry below). Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs. Help some people. Benadryl. Allergy-related conditions seem to flare up CH. Some people take Benadryl, 25 mg every 4 hours and 50 mg at night. As tolerated. Not at night if you are also using melatonin. Probably if you are trying Benadryl, you might skip the melatonin. Other anti-allergy medicines, such as Claritin, seem to help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.
  23. CHfather

    CH lasting longer than 3 hours- Are they Shadows?

    Hoping you'll find that O2 continues to work for you!
  24. CHfather

    CH lasting longer than 3 hours- Are they Shadows?

    'nurse, have you looked into hemicrania continua (or other hemicranias)? https://en.wikipedia.org/wiki/Hemicrania_continua
  25. CHfather

    Just got diagnosed

    Yes, some people use ginger beer.