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CHfather

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Everything posted by CHfather

  1. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    Ginger is considered very good for shadows. A strong tea made from sliced raw ginger is good. You can buy commercial ginger teas (if you're careful that you're getting real ginger), use ginger beer (non-alcoholic), or chew on ginger candies (again -- real ginger). Ginger People is a company that makes strong ginger candies. Some people have found that energy shots also help with shadows. I'd have that coffee ready in advance, and I'd seriously consider the energy shots as an alternative. Small as they are, there's more caffeine in them than what you're brewing, and you can get then down real fast. Something I have wondered about but have no definitive position on -- I would think that two Benadryl at night might induce a pretty deep sleep, leading perhaps to not awakening until an attack is farther underway than it would be if you hadn't taken the Benadryl.
  2. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    JJ', Without oxygen and without the other standard pharmaceutical abortives (triptans, usually injectable but sometimes the nasal spray works), you might try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. (Since you're getting hit during the night, you probably are waking up with them, so "first sign of an attack" in this case just means ASAP.) That reduces the severity of attacks for most people, and sometimes aborts them. Many people think that the colder the energy shot is, the better. For some people, particularly in their early stages of CH, a strong cup of coffee will work. Caffeine is the most important element, but some people think that other elements in energy shots/drinks, such as taurine, also help. You can also try drinking ice water through a straw aimed at the side of the roof of your mouth where the CH is; the objective here is to create "brain freeze." Standing in a bathtub of water that is as hot as you can stand might help. You can also forcefully inhale and exhale very cold air, from an air conditioning vent or just outside if it's very cold. Some people find that very vigorous exercise helps, particularly vigorous exercise in cold outside air. Some people say that CBD oil has been an effective abortive for them, and apparently DMT is, too, for some people (two entirely different things, which I put together just because of the initializations and because I think they are cannabis derivatives). Since we're covering all the bases, I'll add that a few people have said that vigorous sexual activity, including masturbation, will stop their attacks. Those suggestions are presented in roughly descending order of possible effectiveness (in my view). Benadryl helps a lot of people as a preventive. 25mg three times a day and 50mg at bedtime. Or what you can tolerate. It will make you groggy. Do not delay about getting oxygen. A standard prescription might read something like "Oxygen therapy for cluster headache. 15-25 minutes at 15 liters per minute with non-rebreather mask." (Docs use some abbreviations in there.) Let us know when you have the prescription. Usually a doc will fax it to a provider. Sounds like you might request Apria as the provider. You might check possible triggers in the file of that name in the ClusterBuster Files section. Start on a loading dose of D3 ASAP, along with the other supplements. Most people do not think that chiropractic or other bodywork helps. Some people find that it does help them, so ask around among your peers. Acupuncture has been effective for some people. It is said that there is a medication coming to the market fairly soon that might be an effective CH preventive. If there's any way that you can count yourself as "lucky," it's in having received a fast diagnosis. The average time to a correct diagnosis is 3-5 years, during which time many people continue suffering as well as having unnecessary surgeries, tooth extractions, and many other useless treatments, or are treated as though they are crazy.
  3. CHfather

    Has melatonin made CH worse for anyone?

    A couple of other people have had the feeling that they got worse attacks on nights when they took melatonin. Melatonin is quite low in people during their CH cycles, and it has affects on regulating activity of the hypothalamus, so that's why it is recommended, and probably why for some people it works very well.
  4. CHfather

    Zolmitriptan spray - how fast does it work?

    missing . . . To repeat Jon's question: Do you have oxygen??
  5. CHfather

    My Face Hurts

    THMH, I agree that there are a lot of qualifiers in the article related to CH. And I'm not sure how they concluded that some people who were diagnosed with hemicranias had actually had CH. Guess I'd have to read some of the other articles they mention. Interestingly, here's the title of an article from 2010 that I found while looking for others: "The prevalence of headache may be related with the latitude: a possible role of Vitamin D insufficiency?"
  6. CHfather

    My Face Hurts

    This recently updated article (September 2018) contains interesting information about indomethacin and CH. http://www.medlink.com/article/indomethacin-responsive_headache_syndromes The authors conclude, "All patients with strictly unilateral headache should receive an indomethacin trial." Kind of makes sense (although they say that in cases when CH is responsive to indomethacin, larger doses for longer periods are required, so I'm not sure what the proper "indomethacin trial" would be.
  7. CHfather

    Happy Holidays and thank you

    Thanks, Jimmy. Best to you, too.
  8. CHfather

    My Face Hurts

    It's a NON-rebreather mask that you want, not a rebreather. I have no idea whether something bad builds up in a rebreather mask, but nothing builds up in a non-rebreather.
  9. CHfather

    Hello (First Post)

    This is from Todd Rozen's report in 2011, based on surveys filled out by more than 1100 people with CH, "Cluster Headache in the United States of America" (he reported there that more than 70% of people with CH had a history of smoking, a figure confirmed in other studies) Interestingly, a very low percentage had known cardiovascular disease (myocardial infarction 1%, bypass surgery 0.3%, and coronary stent placement 1%). Strokes were rare occurring in only 0.2%.A diagnosis of emphysema or chronic obstructive pulmonary disease (COPD) was noted in only 2%, while lung cancer occurred in only 3 patients or 0.3%. Peptic or duodenal ulcer disease was noted in only 5%, while diabetes occurred in 3%. Epilepsy was noted in only 1%.
  10. CHfather

    Amitriptyline... Anyone heard of it?

    Brain', Yes, you need some kind of a stand to hold the bigger tanks. There are stationary racks that hold them, and there are also carts (with wheels) that will stand in one place or can be moved. I am imagining that a competent O2 supplier will provide that if they give you large tanks. There are racks for the smaller tanks, too, and I assume one should also be provided to you if you get a smaller one or several smaller ones. For example: https://www.globalindustrial.com/p/medical-lab/medical-equipment/oxygen-therapy-and-supplies/economy-oxygen-rack-holds-6-e-d-or-c-cylinders?trackType=4&trackPrimKey=0&trackCatKey=0&webCatKey=0&presentType=98
  11. CHfather

    Amitriptyline... Anyone heard of it?

    Freaking barbaric. What is wrong with these people!?! If they're actual tanks, you can buy a regulator that will go up to 25lpm. But as you suggest, if they're small tanks, they won't last long. Eventually you might wear down the oxygen supplier, who will tire of constantly having to replace them. Or you can switch to using welding oxygen, as many people do. There was someone else on the board just today or yesterday who was prescribed amitriptyline. It is not a first- or even second-line preventive, at least as far as I know and have read. You know about the D3 regimen? Your best bet for long-tern prevention. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Meanwhile, I guess you know that you ought to be looking for a different doctor, preferably at a headache center. I just looked at the old recommended doctor list that posted here. Sadly, none in Iowa.
  12. CHfather

    Hello (First Post)

    The thing about the pacing, etc., is that it's true, as FunTimes said, that not everyone with CH does it, but almost all do. Things are a bit is different when there's a pretty reliable abortive like oxygen on hand, because that does calm some of the anxiety and distress (and pain) that are part of the reason behind the pacing. But everyone who has been here who has had migraines or other severe "headache" pain and also has CH says that there's no confusing those things with CH, because CH pain is so very much worse (the exception might be forms of hemicrania, which at their worst can be at stratospheric pain levels like CH). Yes, a very high percentage of people with CH smoke (and, FWIW, a very small percentage of people with CH develop lung cancer--the incidence of lung cancer would be expected to be much higher than it is among so many smokers, many of whom are pretty heavy smokers). People with CH who quit smoking don't get relief of their symptoms (a couple of people here have said they thought maybe their symptoms got a little lighter after they quit).
  13. CHfather

    Hello (First Post)

    Brian, I'm sorry to say that I have no insight. Too much going on here for me to perceive anything that might be helpful. I will tell you that people don't "grow into" CH from other "headache" conditions, which seems to be something you're worried about. Yes, people with other "headache" conditions do have or develop CH, but that's like a tenth of a percent of all people with those conditions. Our equivalent here to "take two aspirin and call me in the morning" is "you should probably try the D3 regimen." I have no reason to think it would help you, except that it seems to help with quite a few conditions, and it's essentially nonharmful. You can read about that here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Maybe others will have better insight. Wishing you the best.
  14. CHfather

    My Face Hurts

    Verapamil is standard preventive treatment for CH. Usually people start pretty low and increase dosage (with heart monitoring). It usually has no effect at first, which is why people are sometimes given a course of steroids to ease the pain while the verapamil (hopefully) kicks in. I know you said you think steroids made your condition worse, and I'm not doubting you, just saying that's the standard course. Many people here have had relief from verapamil at high doses (using the immediate-release kind, not extended release), and many people here feel that verapamil was harmful to them in other ways. Sometimes the dosage has to get up over 900mg/day before it becomes effective. Nortriptyline is a tricyclic antidepressant. It's sometimes prescribed for tension headaches, but is not any kind of standard therapy for CH. I hope you get your O2 sorted out and that it helps, and that you get some clarity and appropriate treatment on Tuesday.
  15. CHfather

    My Face Hurts

    Elrik', As ThatHurtsMyHead had suspected, this is the wrong mask. Non-rebreather, as you say, is what you want. Your oxygen supplier should have one. A basic one is about quite inexpensive at amazon. For example: https://www.amazon.com/Dealmed-Non-Rebreather-Oxygen-Mask-Adult/dp/B079HDP62H/ref=sr_1_3_a_it?ie=UTF8&qid=1544374018&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1 There is probably a way to adapt your current mask, but I'm not clever enough to know what it would be. This is a link to the mask made specifically for CH, which people have very good experiences with: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit With a tank and a regulator that goes to 15 as yours does, you should be able to get success with the right mask. I know there are Omega-3 pills made for vegetarians. It's possible that Batch has advice related to the most desirable EPA/DHA amounts and ratio. In his post, Batch is saying that the 5,000IU/day of D3 you are/were taking is not enough to get your D level high enough, and even 10,000IU/day will take a long time. He's encouraging you to do the 50,000IU/day "loading" regimen (and to be sure you take all the other ingredients). Jaw pain is not uncommon with CH. It's slightly troubling to me that a sumatriptan injection doesn't stop an attack for you. Maybe that happens with some people with CH, but I'm sure it's very rare. Important information for your neurologist appointment.
  16. CHfather

    Pounding Head, Broken Heart

    MG, you have been a blessing to all of us here for so many years, in so many ways. I hope our love for you is of some help at such a terrible time.
  17. CHfather

    Oxygen concentrators?

    Concentrator is not good. The O2 it creates contains too much room air; the liters per minute settings usually do not go high enough; and they're often noisy, which is one more thing you don't need during an attack. Your neurologist should not really be prescribing the delivery method. I'm concerned that s/he will also prescribe cannula instead of a non-rebreather mask (or fail to specify a non-rebreather mask). (When the supplier sees a concentrator prescribed, they are likely to think unless the prescription specifies it that you are a typical COPD-type patient, and they're likely to give you cannula instead of a non-rebreather mask.) The prescription should read something like: "Oxygen therapy for cluster headache: 15-20 minutes at 15lpm using non-rebreather mask." If you can get a prescription for 25 lpm, all the better. The oxygen provider should -- but just as likely won't -- know what equipment is appropriate for CH. You might have to educate them. What you want is at least one large tank (an M or H tank) for home and at least one smaller tank (E tank) for portability (car/office). Some people get by with a concentrator, at least in the early days of their CH, but it won't match the aborts you get with a cylinder.
  18. CHfather

    Energy shots question

    It's not likely to help you much to drink it before you go to sleep. Some folks have experimented with energy shots/caffeine as a preventive without much success. Although one or two have said it works as a preventive for them, it wasn't clear to me how much they were using, how often.
  19. CHfather

    Newbie help UK

    When people find an energy beverage that works, they tend to stick with it, so there are people who use energy drinks such as Monster and RedBull. The thing about energy shots such as 5-Hour Energy is that they actually contain considerably more caffeine than a RedBull and most Monster drinks, and caffeine is considered to be the primary agent, although other ingredients are also believed to help. Having more caffeine and being much easier to drink down quickly makes the shots preferable for some people to the drinks.
  20. CHfather

    Newbie help UK

    Hello Maria. So sorry for what you are going through. It's my understanding that indomethacin can take a couple of weeks to be effective. It might not help at all if you don't have some kind of hemicrania, but I wouldn't give up on it yet. Indomethacin can be quite hard on your digestive system -- painful or at least uncomfortable for many people, but not all. Often it is prescribed along with a medication like Nexium or Prilosec, to protect the stomach lining. (One reason I suspected a hemicrania is that your response to the CH meds has only been partial, and that's a pattern in hemicrania.) Couldn't the hospital write you a prescription for some form of sumatriptan? One thing that often helps people with CH is to quickly drink down an energy shot such as 5-Hour Energy as soon as an attack hits (or if you learn to feel one coming in in the moments before an attack begins). It will often make CH attacks less severe, and sometimes abort them. Some people find that taking melatonin at night, starting with about 9mg, helps with nighttime attacks. (I just remembered that melatonin is, or was, only available by prescription in the UK.) Aside from the possibility that indomethacin will help you, I don't think you are taking any CH preventive meds (I'd have to read back more carefully to be sure). Oxygen and triptans are abortives, meant to stop an attack, but preventives, such as verapamil, are meant to keep attacks from happening. Sometimes a course of steroids is used to stop the pain (or try to stop it, usually successfully) for a while, so that the preventive can get into your system enough to take effect. (I have no idea how any of this interacts with your thyroid condition.) The vitamin D3 regimen is also preventive. Doctors sometimes prescribe preventives other than verapamil, such as Topamax or gabapentin. All CH prescription meds, except oxygen, have side effects, and people have strong opinions about all of them. Most people here find that if they can, they strongly prefer to rely on treatments that don't seem to have significant side effects, such as D3, oxygen, and "busting" (ending cycles and potentially preventing them using psychedelic substances, sometimes at levels that have no psychedelic effects). There are also new migraine preventive meds on the market that show some promise of possibly helping people with CH. I guess my overall point is that there's a lot more than can be done to treat CH if that's what you have, and I'm hoping you get the best of advice and treatment at your December appointment. To get a straightforward sense of pharmaceutical treatment options, you could google [goadsby treatment of cluster headache] (without the brackets). Wishing you the best and optimistic about much better times to come. It's great that hubby is so much on your side.
  21. CHfather

    Newbie help UK

    So sorry, 'Hubby. I'm a supporter myself (my daughter). I know how terrible it is to see that suffering in someone you love. As others have said, though, it's going to get better. Such great perspectives you have now received from two of the greats, Freud and Tony Only! I'm troubled that her attack resumed, or she had a new attack, so soon after the sumatriptan injection, and by the number of attacks she is suffering every day. I hope your neurologist will look closely at all the diagnosis options. (From what I have read you to be saying, there is no reason that she should be diagnosed yet with chronic CH -- chronic means a year of essentially uninterrupted attacks). In our experience, you get better advice and treatment from a headache center than from a standard neurologist. I say this a lot, and I'm often wrong, but I would want to be sure that the neurologist considers hemicrania continua as a possible diagnosis. That's a condition that has many symptoms similar to CH (and similar to what your wife is experiencing), but unlike CH it is treatable with a single medication, called indomethacin. When they gave her the O2 in the hospital, was she breathing it through a mask (or just with those tubes that go into your nose)? Mask is essential. It's my understanding that Ouch(UK) has been quite helpful to people with CH, particularly regarding getting proper oxygen promptly. https://ouchuk.org/ I looked there for information about the Imigram/Imitrex shortage, but didn't find anything very current. I urge you to be persistent about this (while also considering the negatives about those injections that have already been mentioned). If she does go that route, be aware that the injectors can be opened so that she can give herself smaller doses, which are sufficient for most people with CH and not as damaging. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ The nasal sprays do help some people, so I'm hoping it turns out to be that way for her.
  22. CHfather

    Side Effects D3

    You can send a message directly to Batch by clicking on the envelope icon at the top right of the page and typing Batch into the To line. I don't love these "back-channel" communications because then we don't get to see the information that might be helpful to someone else in the future, but obviously that's my problem, and you should definitely send him a message.
  23. CHfather

    Nothing seems to work

    Among his thoughtful and excellent suggestions, F'T' made that one about ginger. I'd be surprised if people chew fresh ginger -- but maybe they do. I'd love to be corrected. I'm most familiar with suggestions for strong candies that are made from real ginger (The Ginger People make some), candied ginger (with a sugary coating), or ginger tea made from fresh ginger. Although these are typically more recommended for shadows, there are people who have gotten some abortive benefit from them for attacks.
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